Sympathy, Empathy and Support- Voluntary Nursing in a Hospice

Sympathy, Empathy and Support- Voluntary Nursing in a Hospice

Magdolna Singer

PALLIATIVE VADEMECUM
Hungarian Hospice Foundation

FOREWORD TO THE SERIES

In your hands you are holding the first edition of a new series of books
published by the Hungarian Hospice Foundation. The’Palliative
Vademecum’ is an informative and educational series, which invites the
reader on a journey, to explore more deeply  how to cope with the
seriously and terminally ill.

People working in the health care system – doctors, nurses,
physiotherapists, social workers, psychologists, dieteticians and other
experts – are often faced with the physical and spiritual suffering of
terminally ill people. Their knowledge and experience is not always
adequate to meet the needs of such patients.

Their colleagues are not always able to help with these issues. Their
professional trainning does not prepare them to deal with the task of
comforting the bereaved or offering  emotional support as panacea to
the seriously ill.

It is often difficult for healthcare workers to cope with the task of
conveying  bad news, nor does their training  provide a methodological
basis for communication with a seriously or terminally ill person.
Historically, health care is concerned with  the physical state of the
patient, and satisfying spiritual and mental needs is not a traditional
part of the caring profession. Spending time with a terminally ill person
is unfamiliar and difficult for both health workers, family members and
the friends around them. Is it acceptable to talk candidly about their
real condition, about the ominous future, about their imminent
condition? If it is, then how? How can a seriously ill person’s life be
livable?  The holistic approach of the hospice movement considers
patients in all their complexity. They try to achieve the best possible
quality of life, with the best  and most up-to-date medical treatments,
and  with the help of  sensitive psychological, social and spiritual
support.

Palliative Vademecum literally means: Journey with us to the realm of
treating symptoms! The planned volumes for this series deals with the
alleviation of physical and  spiritual symptoms of seriously ill people and
they come from the pens of  the best Hungarian experts.

I trust that the volumes of Palliative Vademecum will be  useful for
those readers interested in the alleviation of the sufferings of the
terminally ill,  and that they will contribute to the preservation of the
human dignity of patients.

 

Dr  Katalin Muszbek

 

 

 

FOREWORD

Since 1991, the fellow workers of the Hungarian Hospice Foundation
have practiced home nursing for thousands of cancer patients.
Voluntary helpers offering their time and work, free of charge, have
played an important  role in it. They were there at the establishment of
the foundation,  and increasing numbers of  these volunteers are with
us today. In  the hospice team several areas of expertise are
represented, in accordance with our holistic approach, and traditionally
non-professional voluntary helpers also have an important role. They
are indispensable members of the hospice group offering provision for
the sick. Their presence makes the complex care of sufferers complete.

There is no hospice without voluntary helpers. Attentive, loving care,
which is the entire ethos of the hospice, is unimaginable  without them.
Voluntary helpers are not there primarily to offer any professional
expertise, but  to give of themselves. They give their time, attention,
kindness – those things  which we as professional staff are unable to
offer at the ideal maximum level, no matter how much we would like to,
because we are so busy with our professional tasks.

There is no hospice without voluntary helpers. Working year after year
with the terminally ill would be impossible without strength and faith,
and  nobody has more of those qualities than voluntary helpers . Who
would we get support from, if not from them? It is a very good feeling
to work with volunteers.

…….and last, but not least: there is no hospice without volunteers
because those sufferers who are saying farewell to their good-or-not-
so-good lives could  not possibly receive  a more heart-touching and
humane provision for their journey, than the concern and care of an
unknown person.

The author Magdolna Singer has been working as a volunteer in the
team of the Hungarian Hospice Foundation for ten years. With a
serious illness in her background, she has been working with
tremendous faith and  an imperturbable love of life, undertaking an
active part in training fellow hospice workers as well. The long-awaited
booklet you are holding in your hands is an exemplary  work, an
appetizer,  which nonetheless does not hesitate to address serious
issues. The tiny cameos of  individual lives are very clearly etched, and
reveal to us completely a few minutes of the lives of patients. We can
share the joys as well as the trials and errors of the volunteer.
Volunteers and professionals of  a hospice can equally be enriched by
it:  the art of listening, the small practical  suggestions which can make
nursing easier, the pain of illnesses and the pleasure of helping  others
permeate us as we read. This book is both for us and about us.
Cecília Keresztes
Provisions for the journey

Only those who share happiness, are able to have it.  Light only
becomes a blessing when it is shared. Because when we were
banished, the Allmighty said:

I leave  everyone in your charge, everyone, one by one, without
exception, help them, give them to eat,  clothe them, look after
everyone as you would look after yourself  and do not let them sink
into  darkness. Share all your gains,  all your achievements. The whole
world is yours. You are free from the stones to the ether. Get to know
it, conquer it, nobody forbids it, but woe to you if you keep it to
yourself. I release you, as well as all others: you are responsible for
everybody who lives with you and you have to account for every penny
you spend on yourself, for every pleasure you clutched to yourself and
for every happy moment you kept for yourself. And now, just go,
because the world is yours.

Béla Hamvas

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

STEPS TO BECOMING A VOLUNTARY HELPER, GENERAL
INFORMATION
To do good, we do not have to ponder over it.
(Goethe)

 

 



WHY DO I DO IT? CONFESSIONS OF VOLUNTARY HELPERS

Orsi
I have always had a vague desire to be involved with some
sort of charity work. I think  we all have: when we see a documentary
film about starving children, watch the flood victims on the news, read
an article about refugees, homeless people, we feel a desire to do
something. Then our lives take over, and most of the time we end up
doing nothing.
I had to become seriously ill before all that changed.
At the hospital, where I had a cervical cancer operation, a
young woman came over to me, who had undergone two major
operations but was nevertheless radiantly beautiful. She was the
embodiment of Hope. Or Promise. Just talking to her cheered me up. I
thought, if  I ever get cured, perhaps I could offer similar help. In the
same way that her conern helped me, maybe others could also benefit
from such care.  It was as simple as that. It was nothing more, just
helpfulness, which I think we all instinctively have inside  us. Other
things happened to me at the hospital as well: compassion for the
other patients was revived in me, and the especially surprising change
was that old people, to whom I had previously had an aversion,
became kind to me.
After I was  cured I had to wait for a year. To prove that my
sudden burst of enthusiasm was not a flash-in-the-pan, I presented
myself at the foundation. I enrolled on the hospice course they had
recommended, which really changed my preconceptions. Earlier I had
thought I would present myself as a living testimonial , as a
manifestation of the possibility of getting cured, but the hospice
touched me profoundly. I definitely wanted to work with incurable
patients. It is interesting that I had already read Elisabeth Kübbler
Ross
’s book, the works of Alain Polc, but I had not felt that I had
anything to do with the subject.
I started working with patients and from then on, my
motivations became even more complicated. First of all I had to change
all the verbs I was using in connection with nursing sick people. The
verbs ’I help’, ‘I give’, ‘I support’, ‘I offer’ ’ were substituted by ‘I

receive’ and the verbs ’I talk’, ‘I co
nsole’, ‘I cheer up’  were replaced
by ‘I listen to’, ‘I keep silent’ and perhaps ‘I ask’. I came to the
realisation that as a voluntary helper, it was I who was benefitting,
and  that near death situations were also profound learning
opportunities, and enriching experiences. It is good that it is like that,
the relationship becomes equal. Nobody is indebted to anybody.
When I bathe a patient,  I am also cleansed. If I listen to
someone’s problems, my own problems become diminished. If

somebody on the verge of leaving life manages to understand
something of life, I also get closer to understanding it.  I did not know
all this, I simply experienced it.
Then , after having taken  a break from the hospice work,
one day I went into the hospital. When I passed the doors with
the ’hospice ’notice on them, I suddenly stopped in my tracks, filled

with a curious sensation, an unknown excitement, attraction. From
then on I knew that working with incurable patients was a vocation for
me.
The texture of my motivations have become even more
colourful since then. I am certain that this is my true vocation, and one
in which I can realize my full potential, but I have also discovered  the
elements of a desire for recognition, ambition, challenge in myself. I am
glad if people like my chosen vocation, and I am proud of it, but I do
not like it if I am put on a pedestal. Everyone is aware of their own
value, but undeserved praise is embarrassing. A good nurse works day
after day, at tasks which I only undertake for a few hours each week.
Considering everything, if I ask myself  what gives me the strength  to
get going, once or twice a week,  it is perhaps the beauty of my own
transformation and development, which this service has fostered in me.
I have met my better self through my relationship with patients. I can
forget about my quarrelsome self which finds fault with trifles, my self
which finds it dificult to experience love, but which is  also a part of me.
When I see how my desire to dominate is diminished, when I am
learning modesty, even  humility and when my heart opens and  I
become open to love, this is the great gift which has been making me
get up  and set off for years.

Sarolta
Ever since I can remember, I have  been helping the weak,
those who have stumbled.  My children  make fun of me and call
me ‘mum, the guardian’. I saw an old woman in our street for example,
she was a bit dotty, and she was dribbling, she could hardly speak. I
took her arm, I took her to our flat and helped  sort out her business
affairs. It  transpired that she was known at the neurological clinic. This
is only an example, it may not even be appropriate here. I wanted
some permanent service, some work in connection with children. It has
not been realized, but the desire was still brewing in me. But it was
impossible when I was working 10-14 hours a day. I retired 2 years
ago, if it can be called  retirement, as I still work a lot. I did not even
know what a hospice was. One day an acquaintance asked me to go
along with her to a lecture on the hospice movement- she thought it
was just the thing for me. I thought, what on earth is a hospice, but
OK, I’ll come.
You know, even nowadays I still think that if it weren’t for
that lecture, I would never have been so grabbed by it. I heard an
amazing lecture. So here I am,  for two years now. It’s a fantastic
feeling when I can see that I really can make a difference. That
sometimes just a chat can reassure and lift the spirits of  a patient.
Kindness and care is visibly appreciated.  I always leave with a good
feeling, that I was able to help. But I have not given up the idea of
working with children. I am planning to go to a children’s hospital.

Edit
I never used to concern myself with questions like  why am I
living, what is my purpose  in  this world. Then I became unexpectedly
ill, with breast cancer, and that helped me to find my path. Now I say
that  the best thing that ever happened to me in my life – with the
exception of the birth of my children, of course- was that I got ill! I took
it very casually, everyone was amazed, and I loved it- never before had
I received so much praise, as during those few days. I was examined
and  told that it was a tumour. The next day, that it was a malignant
tumour, cancer, and that they had to operate. The third day, they
operated. I didn’t give a fig- I just proudly lapped up all the praise.
After the operation they said ‘let’s just see if there are any metastases.

Whoopsee….. that had never even occured to me. That was interesting
news which had never even occured to me.  I had been completely
confident that I would get well. There was no question about it,  I had
12 and 13 year old children, I had to live and I would. My self-
confidence was a bit shaken, but then I fought resolutely. I knew that I
wanted to bring up my children. I lost one of my breasts, and then had
chemotherapy. Luckily the cancer had not spread.
I did not consider the issue  closed. I thought I had better
look around and see what I could do to improve  my health. I read
books, medical books and I studied  different methods of natural
healing. I learned about several interesting, spiritual treatments and I
signed up for a lot of courses. I studied for years, everything was
about me, me, me. Then suddenly I started to think: ‘What do I mean
when I say that I want to live for my children? My children are 15-16
years old. What kind of a burden is it for children to think: ‘Mum lives
only because we live- only for us’. What a weight this is for children to
carry.  And once they fly the nest, what reason would there be to carry
on living? I started to think about my own life, my fate, the purpose of
my life. I went to an astrologer who said the following:
‘You have to subordinate your strong will to a will which is
weaker than yours.
I couldn’t make heads nor tails of it.. The astrologer
explained: I ought to deal with sick people, or with troubled teenagers
or babies. I thought: I have neither the strength nor the desire to deal
with teenagers.  I was glad to be surviving the teenage years of my
own children with relative ease. By no means did I want to deal with
teenagers. Babies? I love them. But it wouldn’t have been right for me-
babies need continuity and permanence, and I did not want to change
my job. Our income is already small enough,  but with such a salary we
would starve to death. It was around that time that I read about the
voluntary hospice organisation at the M. hospital.
I went to the hospital for an interview. It may sound strange,
but as soon as I stepped into the hospice’s sanatorium lounge, even
though I could not yet see anything and I had no idea what to expect,
I was overcome by the feeling: I have arrived, this is it, I have  found
my home. Six years have passed since then. I go on Sundays, because
I work during the weekdays. I love this ministration and I am glad if I
can give succour to the sick, and I can also see the ways in which I am
enriched by the experience. Sadly  I have parted with my husband. I
am in motion, changing, and I hope that this change brings
development. I am going on my path, while he is standing around
where we met 20 years ago, and he is looking on helplessly at the
passing train which he has missed. This  need not  be a problem, but
he would  like to draw me back with him.  I am no longer able to live my
earlier life: to focus on  housework as an adaptable, obedient wife,
unable to see that there is life in the wider world too, beyond the
endless routine of housekeeping.

Hédi
I have always wanted to work with people and in particular
in  a job where I could be of help somehow. I studied languages and I
found a job at the airport. I was able to be of service there,  I always
managed to find solutions to problems. After eight years I started to
get bored with the whole thing. I began to realize that this was not the
place where I was going to be in contact with the truly needy. My
mother was working at the Maltese Charity organisation at that time,
and she often talked to me about a woman who used to drop by, who
was doing hospice work. Mother always talked aobut her with wonder –
how  could anyone bear that sort of work? She thought it was a very
difficult and challenging thing to work with terminally ill  people. I
thought,  I would gladly give it a go.  I did not think it was such  an
impossible task.
I could not leave my job immediately at the airport, as I was
raising my son on my own, I had to consider very carefully my decision
because I had a relatively  good salary there. I started making
enquiries about courses and the caring professions. I found a social
services  course which seemed to suit me,  but  it was too expensive.
Because  I could not allow myself the expense, I began to worry. In the
end I left my job anyway, and since I was now  unemployed, I was able
to enrol on  a course. I told my ex-husband to look around   in the field
of hospice work. It was interesting that I found a job for him, and he
found a leaflet at his workplace where they  happened to be  recruiting
hospice volunteers. I have now been working with patients for a year
and in the meantime I am doing my training.

 

I hope to get  work as a
social worker where I am working. To be more precise, what I long to
do is to become a craft therapist. Terminally ill  patients can lead a
creative and joyful life even through the last phases  of their illness. As
I am good with my hands, I really feel that  I  could be of use in that
field. I have finished the hospice course but I am not  not finished yet. I
am always studying something new- at the moment, for example, it’s
reflexology.  I am aware that I have a lot of growing to do. People are
shocked at how I can bear this work. They would not be able to bear
the suffering of the dying- they would feel too sorry for them. I do not
agonise about the fact that Margaret  has to leave, instead I focus on
what I  can offer her, to help her in this situation.. When I see patients
open up and talk about their sorrows, fears and joys, it is really
wonderful. When I am leaving the hospital, it makes me glad to think
that they have had a good hour. There are situations which are very
upsetting, but  that is not the norm. Once, I wept with a patient who
had just been informed that he had cancer. I was the first he shared
his sorrow with. Overall, I consider death to be a fact of life, and I do
not grieve. Many people call me brave as a consequence, although for
me, it is not difficult. It would be much more difficult for me to get on in
a kindergarten for example. I find  the job of kindergarten teachers
much harder work.

LOOKING FOR MOTIVES
The desire to help, altruism, is an inner need which exists in
everybody. But besides that, volunteers feel an urge to do hospice
service for several other reasons. These motives do not necessarily
always help to nurture an ideal relationship with the patient. In fact
they can sometimes even be detrimental. The examination of the
motivation of volunteers is therefore of  fundamental importance. It
often happens that the candidate has performed some similar service
in their lives, possibly they have nursed, either on their own or with
other family members, a sick relative. The desire to help  people who
are in a similar crisis may be kindled in them. They would also like to
utulize  specialist knowledge which they may have gained. Some of
them have undergone similar trials themselves and in that way they
have become sensitive to other people’s sufferings. In both cases it is
important to be able to work through and resolve  their own losses.
The need to serve patients can also arise from the need for self-
realization and finally there are those who are interested purely
because they are  fully committed to the whole concept..
It is unfortunate, but not uncommon, that the aim might be
to exorcise one’s own losses, consciously or subconsciously. In this
case, a sense of guilt or the desire for self-justification can be a driving
force.

 

It is of vital importance to sift out candidates with pathological
personalities. In case of the so called ‘helper syndrome’, the motivation
can be the need for an extreme narcistic gratification, omnipotence or
the desire to exercise hidden aggression or hostility.
Who can truthfully declare that  they have no other motives,
besides purely the desire to help? Incentives such as the possibility for
self development, elements of ambition? We should not be put off  by
these. It is important to develop our self- knowledge and to be able to
recognize such motivations, to address them and admit them to
ourselves. But if, at the same time as we are extending ‘help’,  we have
conditions and provisos such as easing  our loneliness, or satisfying our
desire for power, becoming ‘important’ , then we cannot listen properly
to the patient,  we are not able to wholly hear them, we cannot
experience spontaneous contact and togetherness with another
human being.

HOW TO PROCEED?

With a quastionnaire and an interview and careful
consideration,   candidates whose motives do not seem appropriate for
hospice  work with the terminally ill,  can be sifted out.
Those who are found suitable at the interview, start their
hospital work alongside an experienced helper. Many volunteers are
immediately able to adapt themselves to the hospital routine and they
find the best way to approach patients instinctively, with all their heart.
Many people have such a high level of emotional intelligence that even
without any hospice training, they can almost immediately perform
excellent work, with their sensitivity and empathy. But it is precisely
these people who are most open to the advice of more experienced
helpers. They accept with pleasure the learning process and do
everything to deepen their knowledge. Naturally, there are a lot of us
who need time and practice before we can function with ease when
establishing contact with the patients, and throughout our  continuous
relationship with them.Whatever their background, helpers have to
attend a hospice training organized by the Health Authority and
Postgraduate Training Institutes (Egészségügyi Szakképző és
Továbbképző Intézet- ETI) and the Hungharian Hospice- Palliative
Association. The period before the course begins is a good time for
clarifying  for ourselves, whether we can, in practice,  actually realize
our vision.  It is often the case  that we have preconceived ideas of
something, perhaps romantic, idealised ones, which bear no relation to
reality.  It may turn out that a duty which appears  to be  noble when
seen from the outside – to nurse and console our sick fellow human
being – is not such an attractive job after all.

 

We may not be able to
bear the sight of suffering, disabled bodies, excrement, discharges and
offensive smells. We may simply get bored, not be able to strike the
right tone with the patient, so the service we offer  becomes an
uninspiring routine. All this is not a problem,   and there is no need to
be ashamed. But we should realize our mistake and seek an
alternative and less demanding field,  where  our altruism is rewarded
with personal satisfaction and enjoyment in our work. Service
performed with pleasure is the basis for quality work and long-term
commitment.
Experience shows that those volunteers who  are not stronly
enough motivated  will drop out sooner or later and only those who are
more committed, hold on for a longer period.
Working on  the principle of  gradual involvement, voluntary
helpers can take part in home nursing  after three months of hospital
service. In this case, there is more need for independence, since the
volunteer is working alone, and has no one to help supervise or  to
turn to for immediate help. They have to adapt themselves not only to
the patient but to the family as well.
As is the case with the other members of the team, the
opportunity for  constant professional development is provided for
volunteers as well. Besides hands-on practice, regular case
discussions, internal trainings, seminars, self-awareness groups,
national organizations  and conferences can all help in  continuous
development. The Hungarian Hospice Foundation organizes their
training courses at the Budapest Hospice House. They offer lectures,
courses and a wide range of self-awarenesse groups available for
volunteers who want to develop their full potential. The Bálint group
and supervision offers help in releasing the tensions of those who
work with the terminally ill.  They help work through the frustratuions
of helpers who are continually faced with loss.
Those who have university or high school degrees can
become Hospice counsellors, through a course organized by HIETE,
Ecumenic Association of clinical attendants and by the Hospice-
Palliative Association. Those interested can enrich their knowledge
about grief and mourning on a course organized by the Eclipse
Association and then, as trained grief counsellors, they can conduct
groups for mourning family members.
Voluntary helpers need not be merely passive recipients of
development programmes,  they can also contribute to their own
training and to the life of the community, with their own initiatives and
ideas.

VOLUNTEERS ARE  TEAM  PLAYERS
We are not alone. A voluntary helper never works in
isolation. They do not create a hermetically sealed unit  with the
patients and their families, but work as just one entity within the team
of carers for the terminally ill, toward a common goal and with a
common task. They  not only have the chance to share their questions
with the group, but they are also obliged to think, to cooperate as a
member of a group and to consider themselves as just one part of a
group.
They are obliged to write reports, to inform of  any sign of
change  in a patient, and whether or not  the  patient’s needs are
beyond the capabilities of the carer.  Participating in the weekly case
discussions is also part of the volunteer’s work.
Nursing a seriously ill person gives rise to several problems.
Being unable to work he may have additional financial burdens, the
loss of his mobility makes it impossible for him to sort out and organise
his affairs, and the life of the entire family may be turned upside down
by the problems of organizing his care. A serious change in a person’s
physical state  requires unified effort between the family and  the
hospice team.
This unity is  beautifully illustrated in the studies by György
Gyukits and Cecília Keresztes. The doctor establishes the optimum
method of pain killing, the social worker makes big efforts to sort out
the financial situation of the patient: he settles any tax debts and
applies for financial  aid, the nurse even helps by speeding up the
administrative processes and paper work, through her acquaintances.
The physiotherapist  succeeds in getting the patient from a wheelchair
to a walking frame, and then to a walking stick. The volunteer provides
emotional support and a warm human contact with  her  unflagging
visits. During this phase of improvement the presence of the hospice
team diminishes, but the regular visits from the nurse and the
volunteer remain in place. The patient gains insight into how, when the
need arises, the team’s concerted efforts are there for him, and this
can be reassuring  in case of later difficulties. (1)
The members of the hospice team naturally support one
another as well. The voluntary helper can feel that they are part of a
safe community. They are not left in isolation, whether in matters of a
professional nature,  the need to alleviate stress, or if they feel
emotionally insecure.

WHY ARE VOLUNTEERS NEEDED

The members of a hospice team are: a doctor, a nurse, a
physiotherapist, a psychologist, a social worker and a priest. Why, as
well as all these professionals, are volunteers necessary?  What does
a non-professional volunteer have to offer?

 
Volunteers have an extremely valuable commodity at their disposal,
which  nobody else has: they have time. This does not mean of course
that in their everyday lives outside the hospice they are bored
housewives or unemployed people looking for some kind of activity to
while away the time. Quoting an American advertisement: „Volunteers
do not have more time, but they have more commitment.”. But how can
we say that they have the most time at their disposal? Doctors, nurses,
and physiotherapists have many concrete and clearly defined tasks to
do concerning the patient. In the hospital or in homes there is always
another patient  waiting for them, they also have to deal with
administrative work as required  by the insurance and  professional
institutions, the organizational duties, the huge number of cases
requisite for a suitable salary, so they have to organize their time well.
No matter how humanely and kindly they perform their work,
they have their limitations. Compared to them,  voluntary helpers have
an easier job. Most often they  are only required to simply listen to the
patient with their full and undivided attention . It is the volunteer to
whom they  can complain – patients can tell them things which they are
unable to express sometimes even to their relatives.
It’s possible that the patient will complain about a family member who
is part of the nursing team, and the same relative, while seeing the
volunteer out,  complains about the difficulties of nursing the patient,
who is  troublesome or impatient,  due to the illness. Or the relative
needs to talk about the emotional sufferings and anguish, caused by
the approaching death.
The patient and the family do not want to „trouble” the
doctor or the nurse with their emotional  problems even if they were
available to listen. They generally  respect their time and are reluctant
to abuse it. They feel much safer unburdening  their difficulties on the
shoulders of the volunteer.

As soon as he sees me, Géza grabs  his coat  and makes a 
run for it. I think he must need some fresh air, although I don’t know
how he spends the short time while  I sit with  Panni. She recieves me
in a big flurry. You’re here at last! Oh my dear, I was so looking forward
to your visit! You know, nothing ever happens around here, it’s always
the same, always the same. Has my husband left? That’s great, thank
God. He’s really in need of a walk, or  maybe he’ll  even  allow himself a
game of chess in the park. He really deserves some fun, he has so
many problems with me. I’d love to join him, , but as you can see, I
can’t  even stand up. But at least you are here, at least I have a guest.
If you only  knew how much it means to me!

The volunteer brings the outside world in. Both the patient and the
entire family are glad when they arrive. Their physical and emotional
support means a lot during the illness or mourning period too. The
members of the family find some release from their continuous nursing .

The social value of a volunteers’ job cannot be neglected
either. It constitutes a significant contribution to society, from the
standpoint of economics also. Furthermore, it also strengthens social
cohesion and stability. Voluntary work helps the social integration of
those who have been driven to the periphery or who have been
excluded. It is an example of an efficient system of self-help and self-
organization, and it creates norms and  shapes social consciousness.

POSSIBLE DUTIES OF A VOLUNTARY HELPER

Never have I  regretted a kind act (Shakespeare)

Although we have focused mainly on the spiritual help which
a voluntary helper can offer, there are in fact a huge variety of ways in
which their services are useful and beneficial.
They are able to support the patient, the family and  the
entire organization.

TASKS IN NURSING AT HOME

The following list will illustrate the broad spectrum  of duties
which  a volunteer can perform, even though  they are not
professionals. They can begin by making a study of the overall
conditions and immediate environment of the patient,  they can care for
the patient by looking after them,  listening  to them, talking  to them,
reading  to them, and giving spiritual support. They can prepare food
and drink and cook and wash dishes for the patient. They can give
them baths,  treat their hands and feet with creams,  comb their hair
and shave them. Depending on advice from the physiotherapist, they
can manipulate  the patient’s hand or feet and take them for walks.
They can organize things like shopping, writing correspondence,
telephoning, filling in  applications, and dealing with  any official
matters. The volunteers can organize programmes when possible as
well, like visiting relatives, going to church or to the cemetery.

THE TASK OF A VOLUNTEER AT THE HOSPITAL

Despite her very poor physical condition, Gizi has a remarkably good
appetite, but feeding her still presents quite a challenge. After every
single bite, she has a long rest, panting all the while, as if she has got
to the first floor and is preparing herself for the next flight up. Despite
all this, she smiles at me, she is very kind. We talk a bit, not too much,
she needs her strength for eating. It is inconceivable to me how an
overburdened nurse would find the time for this everlasting feeding,
this intimate being together.

Hospital volunteers are there primarily to offer spiritual support, but it
cannot be denied that they may reduce the burdens of the nurses by
distributing lunch, feeding and other tasks which do not require
specialist  knowledge.
Some examples: making it more pleasant  for outpatients
while they are waiting by offering them tea, cookies,  food and  drink;
something to read for patients who are getting infusions, and if they
require, buying something for them from the buffet; talking to patients
in the wards,  listening to them, reading to them, combing their hair,
shaving, feeding, giving them something  to drink; telephoning,
arranging things, or taking them home; accompanying patients to the
toilet, helping them sit in the garden;  inviting them to the lounge,
organizing get togethers, supplying news and daily papers; involving
them in creative activities like making Christmas tree decorations,
Advent wreaths, or making postcards; listening to music, showing video
films in the living room, helping them use the library.

HELPING THE ORGANIZATION

First and foremost, only those people who are fully commited to the
whole concept of the hospice movement get involved in this aspect of
work within the organization. Those who feel that they can offer their
experience, their ability to organize, and can draw on their network of
connections. Some examples: finding sponsorship, support funds, PR
activity; following through the filling in and sending off of application
forms;  organizing programmes and  celebrations; recruiting volunteers.

VOLUNTEER SERVICE IN NURSING PATIENTS IN HOSPITALS AND AT HOME

Reflect on this, that whenever you meet someone, they should be
happier after, than before meeting you.
(Mother Theresa)

PREPARATION

Whether we are setting out for the hospital, or a patient’s
home, on each and every occasion we must first prepare ourselves.
What this means is that we must leave all our personal preoccupations
behind by the time we have arrived at the gate. Let’s  tune in to the
task awaiting us. At the hospital, before we enter the ward, let’s
compose our thoughts.

In the same way that we do not make an entrance in dirty
clothes and with unkempt hair, ‘inner cleanliness’  is also indispensable.
It is a simple technique , easy to learn. Let’s think of the patient, to
whom we are going, let’s try to call them to mind, and try to imagine
what condition they are in. They may be anxious or in pain, perhaps
they are unbearably lonely. They are not in their own homes, their
family members, the accustomed  objects, favourite pet, or the
neighbours  are missing. And it has been like that for days or maybe
even for weeks. Who knows when they will be able to go home, who
knows whether there is any hope at all. No matter how long they have
left,  it is a long and difficult journey ahead of them. Or let’s try to
imagine  a beloved relative or even ourselves in a similar situation. If
we succeed in tuning in towards the patient, then we will approach
them with a completely different frame of mind.
It is possible for anyone to learn how to do this. There are
simple exercises, and with practice they will become easier and easier.
When we are talking to the patient, we should devote all our attention
to them. After a few occasions, the mechanism of getting tuned in will
immediately be put into motion. Although this is a technique, a
contrived action, there is no comparison between this and an artificial
smile, as in this case we are endeavouring to be more intimate with the
patient.

‘When I enter the sanatorium, I do an exercise. I know that I
will be faced with  terrible pain, it will be there, staring me in the face. I
also know that even if I have worked  here for 6 years, the sight
always shocks me. I reflect on  and accept all this, as if it were all
written clearly on a tablet above the door as  a constant reminder. It is
very sobering and prepares me to enter. As I reflect on all this, I also
discover deep respect in myself for those who suffer so much  pain, in
this room, there is a basic respect for their dignity and humaity. These
people are the same as me, and their suffering serves as a reminder of
that.
Sometimes what I become aware of is  how much  I
appreciate them. I  not only respect them but also appreciate them for
what they are enduring  in there. I try to take this empowering feeling
into the ward with me. And all this needs only my acknowledging and
being aware of what is going on inside me,  the sanatorium and the
people living in there.
(2)

AWAKENING MERCY IN OURSELVES

One takes it for granted that voluntary helpers  have
compassion and sympathy, but all these qualities can sometimes
disappear, and we may find ourselves standing next to the patient with
complete indifference.

It is not easy to experience other people’s physical and
emotional pains, not even approximately. What can happen though is
that, when we are confronted with the same situation on a more
personal level, through the illness of an acquaintance or loved one, it is
then that we are able to see, feel and experience other people’s
suffering. Yes, now I understand what it must feel like for the poor
thing. But this empathising, if it is ever felt,  often comes too late. What
can we do so that we can get in touch with  the feelings of mercy  and
compassion at the appropriate time and place?
There are different methods for that, let’s look at some of
them.
– If we feel that there is not enough love in us, let’s recall the
person who loved us wholeheartedly, our mother or grandmother. Let’s
feel what we felt when we experienced their love. When we manage to
recall the feeling, let’s emit it and convey it to the patient.
– Let’s consider that other people are our equals. ‘After all –
says the Dalai Lama – all individuals are the same, they are made of
human flesh, bones and blood. We all want to be happy and avoid
suffering. And furthermore, human beings all have a right to be happy.
In other words, it is important to recognize that all human beings are
equal.’ (3)
– Let’s imagine ourselves in another person’s position. Let’s
imagine, as vividly as we can, that we are experiencing exactly  the
same feelings as the patient lying in front of us. We are unable to live
the life we had imagined for ourselves,  we are strongly bound and
fettered by the disease. We feel terrible and we are full of pains. Let’s
ask ourselves, what  would  be the most comforting thing anyone could
do for us.
– Let’s imagine that someone who is very dear to us is lying
in the bed, our mother or brother or sister or a dearest friend. Our
heart would tremble, but it is up to us whether to fulfil our tasks with
embarrassed indifference, or with sympathy.
These are just a few suggestions, and  everyone  can decide
for themselves how to go beyond their own limitations to open up their
hearts. Only we can  recognize for ourselves, what our limitations are
and to what degree we are able to extend ourselves to others.

APPEARANCE, BADGE
Our clothing should be simple and, naturally, clean. We also
communicate by means of our appearance. Extravagant, loud, glaring
clothes  and colours  may hurt the sensibility of the patient, as it may
remind them of  a world in which they can no longer participate. It is as
if someone were rudely reminding them of such possibilities, and
rubbing their noses in it.

In the same way, a skimpy skirt, provocatively tight or  sexy clothes,
jewels, or  too much make-up can have a similar effect. Clothes
inappropriate to the situation can disturb even the most seasoned
patients. But we do not have to wear black or put on a sack, and
discreet, pretty clothes can even cheer up a patient.

We got our yellow uniform today. I’s not in the least bit pretty. The cut
is definitely unbecoming. Bit I am  determined to wear it, and  I
dispense tea in it. The old man kindly says to me ‘You know, I have to
tell you, you were much prettier in your green skirt. It was my
favourite. It was a pleasure to look at you. This costume has deprived
me of  my pleasure!

We make things easier for the patients, the relatives and the hospital
staff if we wear a badge. If we have one on as we enter the ward, the
patiens can rest easy, knowing that  we are a member of staff, and
not invading  their room. Even if they do not know us, they recognize
that we belong to the hospital. While we are talking, they find out who
we are  and can call us by our names.

KNOCKING ON DOORS, ADDRESSING PEOPLE AND SITTING DOWN

A sick person looses their living space step by step, and after
a time there is nothing left for them, apart from their beds. They can
reach a point where other people have to see even to their most basic
needs, and they have to be fed and washed, and can only use a
bedpan and nappies. It is difficult for anyone to sail through all this.
While we cannot compensate them for most of these losses,  we can
still make use of  the  few means which are still at our disposal.
Respecting the space of the patient is one of them. Never enter the
ward without knocking on the door! When we enter, let’s of course
greet the patient, but it is also important to introduce ourselves. We
should approach them politely and carefully and  respect their
response: as for instance whether or not they would like to make
contact. If we feel that they would like our company, we can  enquire if
they would like us to sit down beside them.  If they say yes, we should
not sit on the bed, which is the last little island left for them, but next
to the bed, on a chair.

MAKING CONTACT

Whether we are caring for the terminally ill at home or in a hospital, the
most difficult task is to establish contact.
Even those patients who definitely want some company, will
often have an aversion to an unknown person coming up to their beds.
They are longing to be with someone, but when it comes down to it,
we are after all just strangers to them.
And for those who are wrapped up in their own despair, it is
even more difficult. But whatever the case, as we enter a patient’s
room, there are barriers to surmount, and obstacles to overcome. We
need to muster all our creativity, sensitivity and empathy. Let’s not  be
put off if at the beginning it is difficult to enter a ward or make an
appointment with a family. It is natural and not at all surprising  for
many of us to encounter this, even after many many years of service.
These first minutes are the most difficult ones.
The most simple way of making contact  is by asking
questions. We can always decide in each particular  situation which
questions  to ask. The bedside table, the bed, the posture and
expression of the patient can tell us a lot of things. We can make it
easier for ourselves if we offer tea and biscuits, and we can enquire
whether or not they need a magazine or something else to read or if
they need any other sort of help. If we are rejected, let’s not give up
immediately. It is possible that after overcoming the first refusal, some
kind of contact, or a chat, or  some opening up can still be established,
which might be of comfort and relief  to the patient. We have to be
careful however not to be pushy and not to go too far.  It is always
best to consult them first, about what they would like us to do. For
instance, if you notice that their pillows are crumpled, don’t immediatley
set about plumping them up, or start arranging their covers or tidying
their bedside table. No matter how unkempt they look, do not start
combing their hair and, most importantly, do not give them anything to
eat or drink, unless they have specifically asked for it. We can offer, but
they make the decisions. We must  not be pushy or force anything. If
they reply to our first question, then  cautiously continue to make
further enquiries. We can ask them how they are, when they arrived
at  the hospital, how long they will stay, how they occupy their time
during the day, and whether or not their family is able to come and visit
them. But don’t turn your enquiries into an interrogation, instead, be
kind and sincere.  Talking about their families  is  a good way to begin
the opening up process. Children are usually a good topic.  If they have
a good relationship with their children, then they will talk about them
with pleasure, and if it is not good, then this can be an opportunity for
them to air their problems and complaints. We can be sparing with our
words, but able to elicit some reaction, with which we can establish a
contact.
A picture will slowly begin to emerge, about the patient lying
on the bed before us. It will no longer  be just the impersonal outline of
a body, and the patient will begin to take on a personality.

We will learn about their thoughts, about what feelings there are
behind the unknown face. An invisible thread will begin to be spun
between the patient and the helper.

He arrived today. He is alone in the ward. He is lying on top of the
covers.  His bedside table is completely bare. Although he is already in
his pyjamas, he is still in transit, and not yet arrived. He has not arrived
yet. Through  him, I can feel so strongly the misgivings and total
inconsolabilty which the hospital represents for a patient.  He is an
army  officer. He has cancer of the testicles.
He is about to go to the buffet to get a snack and to buy
some daily papers, but he can’t rouse himself to move. He has nothing
to read, and is just quietly lying there. We talk, and he tells me about
himself. He begins to get a bit  more animated, he  smiles, his eyes and
his gestures  are becoming more lively.
As I am leaving, he quickly  gets up also,  and dashes to the
newsagent
’s.

A  little shift has taken place. In serving the terminally ill, we must value
and appreciate tiny  instances of pleasure. Let’s not expect big
changes, because we will be disappointed and frustrated. If we
manage to make a bedridden patient sit on a chair, if we can walk with
them out  into the spring sunshine, to the park benches, just for a
short time, if a silent, brooding patient manages to speak a few words,
if we can rouse their interest about just anything, and they ask for a
newspaper or listen to the radio, if we can groom them a bit, or if we
can just stroke and soothe them a little or share with them a few
intimate and quiet moments – these are, every one of them, of  value .
But we should expect nothing, not even such small things.
We can simply try again, if we do not succeed in making contact with
the patient the first time. During our two visits, the patient might have
time to reflect and get used to the idea of talking to a helpful, friendly
volunteer.

She does not have far to go, before she goes over to  the other side. 
When I get to her bed, she reaches  out her hand to me. Her old
hands find a home between mine, where they can hide. They are dry
skin and bones. We sit and she looks into my eyes.
My god, I am a complete stranger to her, but the moment I
entered the room she immediately reaches out her hands towards me.
She is longing for human contact. For reassurance? For love? For
support? Is she frightened? Is she alone? What is she feeling? Only her
eyes can speak. She is at peace now. But what happens if I leave?

Sometimes it is easy. They  are eager to communicate with us. The
behaviour of voluntary workers in hospitals reflects that they have
time, they have nothing else to do, other than to listen  patiently and
to be available to the patients, if necessary, without any time limits.

How much easier it is for a patient to turn to someone like us, and to
ask them to sit beside them to listen to them and to ask for help with
something.

Last time I spoke with Eva’s mother on the phone,  she seemed  quite
dismissive, so now I am dreading the next call, and  postponing
telephoning. I reach for the phone, then frightened by the possible
rejection, I withdraw my hand. At last I make a firm resolution to  call
the woman and tell her how I am feeling. And I really do it. I tell her
that I’m afraid of her, and that this makes me hesitate to call because I
lose courage. I think she just doesn’t like me, or that she is angry with
me and she would prefer it if I didn’t visit her.  She protests in a friendly
way, saying that she is just a grumbling old bear, but that is just her
manner and she is not in the least  angry with me.  She is very happy
about my visits and  asks when I  can come again next time, and
whether I am free on Thursday.

How simple it was to resolve the problem- just a bit of sincerety. Being
in touch with our vulnerability and timidity, and daring to express it, can
dissolve  difficulties.

I telephone the sick young woman who has just been discharged from
the hospital, and  I ask her when she would like me to visit her. I would
like to see her this week, if possible. I don’t know, she says, I was  just
about to go to the loo- I haven’t had a poo for a whole week, maybe I
will manage it this time, at last. Ring again and we can talk about it.
After this unusual reply, she immediately slams down the phone. I think
she doesn’t want me to visit, but I can’t imagine that her social diary is
so full  that she cannot fit me in to her busy schedule.
I hesitantly try ringing  again  in the evening and she is
ecstatic to hear me, and yes she really wants me to visit, and we fix a
date for next Tuesday morning.

The volunteer can experience lack of self-confidence, but she tries
again, hesitantly, and it works this time. Let’s remember that  rejection,
indifference and aggressive behaviour is not directed personally
against us. If we bear this in mind, and do not take  it on board as
something against us, it is easier to rise above it,  and we can focus on
the most important issues and be of real service.

Rozi  the young volunteer is  complaining – no matter how sweetly and
kindly  she offers her services, families refuse them, they turn her
away.
’How do you approach them? What do you tell them?’ ’I ask
them  whether or not they need me.’ ’I see. Why don’t you say: Good

morning, I am Rozália, the voluntary helper from the hospice
Foundation. I am delighted to say that I’ve managed to find some free
time, two mornings a week, when I would love to come visit you. Which
would be the most convenient for you,  Tuesday or  Friday?’

This method, succesfully applied in the  business world, often works  in
other types of communication as well. But we do not always have to
overcome the difficulties of establishing contacts on our own. If we are
intending to visit a family, ideally the nurse will inform the patient of our
visit, and come with us on the first one. As the patient already knows
the nurse well, and has confidence in her, he can extend that trust and
confidence to the person who is accompanying the nurse.

COMMUNICATION

Respect for life does not mean that we do not allow the
dying to die. Respect for life means that between birth and death we
treat one another so that it will be worth being alive in the world. It is
easy to smile at a newborn baby and to mourn  a dead person. But
between the two …..
… to ensure a humane and dignified existence and
fate for all human beings, that is difficult.(Péter Popper)

BASIC INFORMATION ON COMMUNICATION

It is impossible  to not  communicate. When we are working
with the patient, consciously or unconsciously we influence their way of
thinking and  feeling. Even if we do not use the most obvious means of
communication, language, we convey masses of information  by means
of our appearance, expression, body language and clothes.
Communication is  the keystone of a helping relationship. It is of
fundamental importance,  and the task of  all helpers is to learn the
principles of communication.
Communication is a spiritual need. Alll human beings have an
innate need for communicating. For the terminally ill, the need to
communicate and for expression, is even more urgent and insistent.

Listening… If only they  knew how incredibly  important it is 
for us to have someone who listens, I can cope with  living in an old
people’s home, it’s OK if you think of it positively. My daughter cannot

take any  more. She has three children and she works. She visits me
regularly. I understand her.

But most people here …..they need to tell the story of their lives. Can 
you understand? It’s the only valuable thing they have left, which they
have to offer. They want to hand it over, like a gift. One would think it
is understandable, what it means to us
… why it is important to talk
about our life histories.
So we listen to one another. Here people spend  most of
their time listening to each other’s stories. People who work
here think
that it’s just a way of  passing the time. If only they knew! If only they
also listened a bit!”
(4)

We  continuously communicate on two levels and on several channels.
One of the levels is the direct  communication which we constantly
listen to, and the other is metacommunication, which  continuously
accompanies and qualifies our expedient communications. These two
have to be in harmony ( to be congruent), in order for us to have
credibility. If for example we are unable to  give an honest answer to
the unexpected question of a patient, but we also cannot admit that
we do not know the answer and instead reply with clichés and
platitudes, then we are sending  metacommunicative messages
together with our verbal expression. Our embarrassed look, hesitating
hands and  fidgeting betrays the falseness of our reply.
The following are the communication channels: verbal,
spoken language; vocal channel, miming; pantomime; body language;
awareness of personal space; the autonomous channel.
The most important of them is the verbal channel, where
precise understanding is to be expected. This system of symbols is our
basic channel of speech, of language, and  is the foundation  of our
culture and society and which evolves during human development.
The vocal channel  is that of sound, including tone,
intonation, stress, rhythm, pauses. We are all aware that, as well as
the contents of our message, the tone in which we convey it is of equal
importance. If we speak in a warm tone, full of love, or conversely in an
icy cold manner, or a  commanding or blustering and aggressive one, it
is felt as keenly as the words we are speaking. There is a huge
difference  if we speak loudly, rudely, or softly, or if we jabber, or speak
quietly.
Miming and facial expressions are also very important
communication channels. While it is desirable that we turn to the
patient with a serene, warm expression,  it is also important that we
are aware of their moods and feelings,  and that we are able, like a
mirror, to reflect that back to them. For example, if they say that they
could not sleep at night because they had pains, we can show our
sympathy without words, with our expression. Eye contact has a
special importance in expression and miming. The expression  that the
eyes are the mirror of the soul, is no mere  accident.  While we can
learn a great deal just by  looking into the eyes of a patient,

let’s  not forget, they are also wonderfully adept at reading about the
processes going on inside us. They can recognize for example, lack of
attention, absent-mindedness or just the opposite, our devoted
attention.

Józsi has a kind greeting for me, and because it seems that
he is glad to see me, as if his apathy is beginnning to dissolve, I sit
down next to him on the chair, cheered by the change. But he soon
turns towards the wall. As I look at the thin, collapsed body, his legs
drawn up, his arms pressed close to his chest, I have no  doubt about
which message to believe, his serene greeting or the message of his
posture.

We convey a lot of information also by means of pantomime or body
language. Gestures, the movement of our hands and our head, our
posture and the style of movement (Kinetics) and touching are all part
of this channel. When we enter the patient’s room we can immediately
recognize their physical or mental state. For example, if we find them in
a tense, squatting posture, we can justifiably  think that they are not
well, but a relaxed, open posture means the opposite. Our body also
conveys to the patient  our real relationship to the situation.
Awareness and respect of personal space, proximity is a
specially important issue in case of a sick person. We all regulate it
according to our taste, but a sick, disabled, paralyzed person cannot
have any proper control over it. We can generate bad feelings and
anxiety in the patient if we do not decode properly his needs, if we
impinge on their space, by bending too close, or if we touch them
when they would rather not  be touched. At the same time, touching is
extremely important in the life of patients because of its relaxing and
love-conveying effect, therefore we will address the topic in a separate
chapter. Cultural signals are bits of information which are conveyed by
our clothing, accessories and general appearance. The last
communication channel is the autonomous channel. Physical reactions
which may emerge  during communication belong here, like sweating or
blushing.
These communication skills can be cultivated and developed.
As well as  knowing the principles and theories,  experience and
committed participation are the best ways of learning. After leaving the
patient our work finishes only when we have reflected on our time with
the patient, and drawn whatever lesson can be learned from it.

LISTENING TO THE PATIENT, UNDERSTANDING, ACCEPTING

Nurse Kinga takes me to a family, they badly need a voluntary helper. I
sit beside the patient for a while and we try to break down the barrier
between us.

It is not easy, the elderly  man is unresponsive and hostile.   I  falter, I
am hesitant, I chatter all kinds of things, embarrassed. I am relieved
when I can leave.
It comes as no surprise that they never contact me again.

There is no task more tailor-made for a volunteer, than
simply listening. This task is apparently very simple, one would think
that anybody is capable of listening! Of course we all know how to
listen, but most of the time we simply do not want to. Because time
passes quickly if we are chatting and it is so pleasant to talk about
ourselves, about our lives, about our different abilities, to tell
anecdotes and exercise  our sense of humour. Consoling and
comforting often come as ready made schemes. We often think we are
wiser than the person we are listening to and we are also ready to
give good advice. We have to realise that a voluntary helper is not
supposed to be an amusing partner, and their task is not to entertain.
Of course it may become that,  if the patient needs it. But
inexperienced helpers imagine that their role is to cheer up and
enliven, so that the patients  „forget about their hopeless situation for
a while”: Let’s be more sensitive and open, and let’s adapt to the
current state of mind, mood or situation of the patient. If they are sad,
we should not want to cheer them up. If they are angry, we should not
want to calm them down. What does an incurable patient need? Being
listened to with understanding. Let’s try to understand them. Let’s
imagine that one day we are the victims of an enormous injustice.  We
can hardly wait to tell our partner about it. What do we expect?
Understanding. Being with us. If he started to console us before fully
understanding our situation, it would be like pouring oil on a fire. But if
he genuinely understands our feelings and situation, and he says:
What’s happened to you is really dreadful, then we immediately feel
better. Even if we have not begun  looking for solutions yet,  just by his
understanding, we feel supported and we feel better. It is about
acknowledging feelings and accepting them. A sick person is sometimes
angry. He feels that what has happened to him is unjust. He is angry
with everybody who is still alive and  healthy – even with friends and
members of his own family. Why me? he asks. Let’s accept this anger,
let’s understand it. Of course he is angry or sad. Let’s imagine a mother
who has to leave her children here, but we tell them: Don’t worry, don’t
be angry! It is nonsense to take that approach. Do not be sad,
everything will be all right. These words of comfort sound empty. The
sick person becomes even more withdrawn, and isolated.
The  psychiatrist Elisabeth Kübbler-Ross distinguishes five
psychological stages, based on her studies of  dying people. Rejection,
anger, bargaining, depression and acceptance
.  But Kübbler-Ross lives
in America where patients are openly told about their diagnosis. In
central Europe patients are often not told about how  serious their
illness is, therefore, before the rejection phase, there is also ignorance
and uncertainty.(5)
(The Health Care Act published in 1997 sets down the
guidelines thus:„…to ensure  the rights of incurable patients and the
terminally ill  to entitle them to genuine, reliable and , complete
information about their condition, told with sympathy, and respecting
also the rights of  those who do not want to be informed.”) (6)
Why is it important to know about this, if  each  patient
responds to their illness individually and even if these phrases are
made public, it is not guaranteed  that they appear in their correct
order or even whether or not they are all included. Becoming familiar
with  the state of mind of patients gives us a guide to the  emotional
changes they may be experiencing. It helps us to accept and
understand the patient and we cannot emphasize strongly enough the
importance of these things. Cicely Saunders (the initiator of the British
hospice movement) has written  about this: „Once I asked a man who
knew that he was dying, what he would most appreciate  from those
who were nursing him. He said: that they should appear to be making
an effort to understand me. (7)
But we warn everybody against  indiscriminately applying the
same method  to every patient. If  the patient is angry for a very real
and practical reason, for example because his or her nappy has not
been changed for a long time even though they have asked repeatedly
to have it changed, or there is no one to feed them and they have
been staring at their food for hours as it gets colder and colder,
because no one has fed them, it would not be helpful to say: „ Ah yes,
I understand why he is angry. He is going through the anger and
denial phase of his illness. No problem, I will listen to him and
understand and accept his feelings”. In such a case this would be a
mistake.

It is impossible to stem the flow of Eszter’s despair:  she has
had enough of everything, she hates her bed, the room, her photo of a
beautiful  girl smiling at the camera, taken just a couple of months ago.
She hates not being able to live her life, not being able to go out and
be with her friends, although that’s the most important thing in her life.
She cannot do any homework, and cannot help her mother, she hates
being crippled, she is simply a cripple,she hates it  that she is
impatient, because it’s possible that one day she will be cured, but she
can hardly bear all this, she is incredibly strung out, and seems to be
ready to explode any minute. She has had enough, she has pains, she
cannot stand on one of her feet, at night she is often awake for a long
time, everything is terrible and horrible and she is continuously in this
mood, without a moment of peace.

I am forcibly  trying to drag her out of this dark pit, and
afterwards on reflection I think maybe I made a mistake. In contrast to
my usual gentle and mild  behaviour up to now, this time  I am
insistently demanding that she pull herself  out of this terrible state of
mind, even if only for a short time, and  that she must try to be more
calm and find pleasure in something, just anything, even if only for a
quarter of an hour, or jsut a few minutes,  she just has to make an
effort.

Maybe music would help take her out of  herself, there must be some
kind of  music which would  make her soul soar, and  then even for a
short time she would find release from this pressure. I begged her not
to be angry with me, and that I knew it was easy for me to talk.  I
really had no idea what to do, but listening to music was the first thing
that came to mind. If she wanted, I would give her some cassettes.
I also  I told her not to hate her bed, it was her kingdom at
the moment, and she should arrange it to suit herself,  and try to wring
what small pleasures she could from her situation. She should imagine
that her bed was her submarine or her own aeroplane. And she should
not hate her beautiful photograph either. Her illness and pain were
enough, so she should not create extra problems.  And she should not
grieve about the fact that she was unable to go out at the moment.
Such a wish was impractical at the moment, and she was just torturing
herself by going on about it. If someone has a minor illness, like a sore
throat, they stay at home and concentrate on getting better.
But I haven’t got a sore throat!  she screams and I am
terrified that she misunderstands me and I  might be adding to her
problems in a way I will not be able to put right or explain. I realise
anyway that I’ve been a bit pushy. I ask her whether she’s angry that
I’ve been hassling her so much.  No, no of course not,  she says and
both she and her mother start asking what sort of music she might
listen to. She is not just  thinking of cassettes, but videos, film music,
operettas, operas. She loves opera and she would be so grateful  if I
could get Bánk  Bán for her,  and  Madame Butterfly  with Veronica
Kincses, the opera  Sybill and just anything else. We have a bit of a
chat about music. They ask excitedly when I would be able to get them
the music  and I am really really happy, because I genuinely think that
listening to music would help Eszter a lot.
On the way home I am surprised at myself for forgetting
what I knew about a sick person’s state of mind and how it should be
handled. Acceptance of illness should not be hurried. We should not try
and force interior processes by telling someone not to be sad or angry
but we should  be serene and accepting instead. They have a right to
experience all their feelings, deeply, and for themselves.

We cannot hope never to make mistakes. We can always
learn by reflecting on what happened, especially our own behaviour,
after every meeting.

 

We can see if we were not fully alert and involved,
if we were carried away by our own mood., if we lacked understanding
and sympathy, if we were false or inconsistent in words, thoughts and
feelings, and if our behaviour did not reflect acceptance and love. Self-
reflection requires honesty and courage. It may not be easy to admit to
ourselves that we fell short of our best intentions.

The  river taught [Siddhartha] more than Vasudeva could
teach him. Above all he learned to listen to others with a quiet heart,
with a patient, open soul, without passions and without wishes,
judgements and opinions.”
[8]
A voluntary helper has to learn how to listen with empathy.
We need to recognize what is needed at each moment. We must be
there with our complete self, sensitive to the immediate requirements.
For this type of devoted attention we must put ourselves in the
background. We are not important at the moment. Service to terminally
ill patients trains us for humility.
Communication skills can be learned and developed but they
are largely a matter of intelligence, sensitivity and consideration for
others. We must be aware that while the incurable patient is
experiencing the most difficult phase of his or her  life, the final months,
days and hours are not just a period of awaiting death but valuable
time that still offers possibilities for development and fulfillment. A
person approaching death looks back on the course of his life and tries
to find meaning in it. The most useful thing we can do is help them in
this important task. We should not expect the terminally ill to open up
to us immediately.
We can help by stepping carefully. We should not be surprised if
nothing happens for several meetings, but neither should we be
surprised by the oppostie, when ill people jump at the opportunity to
speak to an unknown person who is a good listener. Most patients
spend a lot of the time absorbed in their thoughts, which often run in
circles repeating the same questions. All we need to do is listen
carefully, but we can listen in different ways. Everyone is familiar with
situations when a boring or talkative person goes on and on,  and out
of politeness we may look as if we are  listening,  while inwardly
indulging in our own thoughts.
When seeming to be listening to the patient we might be
thinking of other things: what to cook when we get home, a parent’s
meeting at school, a call to a business partner, why our sweetheart
has not called us, and so on. Sometimes we listen up to a point but
mainly form our own opinion while the other is speaking and prepare
an answer. This is called passive listening in communication theory. In
our relationship with an incurable patient, the desirable mode of
communication is the opposite-active listening.Our own thoughts, and
even those generated by the sick person must be put aside. We should
allow ourselves to be affected by the emotions generated in our talk,
listening devotedly and with as much sympathy as possible.
Metacommunicative features are easily recognized in both active and
passive listening. The lack of attention in passive listening are revealed
in restlessness and a faraway expression. When listening actively our
eyes show interest and our body language signifies close attention.
The patient will perceive whether we are actively or passively listening
and whether we will help or hinder him. If we show we are interested
in what he says, he will be more encouraged to share his thoughts
with us.

        I am teaching a group of medical students in the lounge.
There is also a patient in the room, a young man with cancer, whom I
have to keep in mind. I ask him what it is like to hear what is being
said. He finds it good and liberating. He is pleased to hear things being
discussed as part of the curriculum, things which make his family and
friends uncomfortable or isolate him from them. They are unwilling to
face the fact that he is ill and this annoys him. He does not talk to
anyone about his illness except his mother.

Patients not only have to cope with their illness, but also
with embarrassment and difficulties in communication. We wish to help
them but may not know how best to do so and sometimes make the
situation even worse. Our lack of understnading increases the suffering
of patients and any clumsiness on our behalf simply makes them
nervous. What we should do is listen with an open heart and allow the
right answers to emerge.

When I was about 12 my grandmother asked me to go with
her to the wardrobe. “My grandchild, look, this is the dress I wish to be
buried in.” “But granny, do not speak like that, it is such a long way
away!” I avoided the question and did not even look at the dress.

 

My grandmother died shortly after although she had not been very ill. She
was walking in the street when her heart stopped and she collapsed.
The family gathered, shocked, in my grandmother’s small kitchen. My
father started to speak but he was embarrassed: “Mum showed me
the dress she wanted to be buried in. I did not listen, I said it was so
far away. Now I do not know which one it was.” Then my mother
said: “Grandma showed me the dress but I did not listen.” My brother
said: “Grandma showed me the dress but I did not even look at it. I
told her she would live for 100 years. I was standing there
helplessly: “The same thing happened to me. She took me to the
wardrobe but I cannot remember. I do not remember which one she
showed.” We were silent and ashamed. Then a woman neighbour
came to our rescue. My granmother did not give up. She finally found
someone who would listen- the neighbour. Aunt Erzsi took the dress
whcih my grnadmother had chosen. We were surprised because it was
brown, not black. We believed it, and did not believe it. My granmother
lay on the bier, contrary to the custom of burial in her favourite brown
dress. All we could  hope was that her serene, almost smiling
expression reflected her satisfaction. Despite all the difficulties, she got
her wish.

        Is it just not done to speak about death? Is our reluctance
the way we try to escape from our own fears?

She is lying alone in the small, twin bedroom. She is thin, but
her abdomen is distended and she folds her hands on it. She does not
want any tea but I can see that she would like to talk- After the usual
questions of getting acquainted we immediately find ourselves in deep
water. She has colon cancer which has metastasised to other organs.
She shows me where she feels pain, in the whole of her abdomen.
Does the painkiller help? Unfortunately it does not. How are you
spiritually? Quite well, I have accepted it, I am just waiting for death.
But at the moment I am waiting for my partner. He promised to come at
11, he should have been here by now. Have you any children? No,
luckily not, that’s the last thing I’d need, you cannot count on children. I
have had a partner for the last 12 years, he is a good man, he adores
me, he looks after me, he does everything for me. I just want to
arrange my will because I do not wish to leave anything to my greedy
brother. He will be surprised. He is looking forward to my death. My
godchildren too, hope to inherit something, but they hope in vain. My
younger brother is a bastard. Have you never been on good terms? No,
never, that would be impossible with such a brother. So you are very
angry with him, probably for good reason, but would it not be better to
make peace with him? No, I don’t ever want to make peace with him!
When you first learned about your illness did you
immediately accept it? No, it was vague, the doctors said nothing. They
operated on me, I thought it was just another stomach operation as I’d
had several before. The physiotherapist came and made me do
exercises every day. I was happy, I was making an effort and
preparing to go home. My final hospital bulletin was on my bedside
table. I read it, two long pages. I saw that I had cancer and
metastases, so many things, good heavens! I burst into tears. The
physiotherapist came and I sent her away. She knew about me but
had not said a word. Then I resigned myself  to it, and accepted the
situation. No problem, it is all right. It is very  important that my partner
is with me. I do not know how I would manage if I were on my own.
I am afraid of pain. I do not know how it will be. I asked the
doctor and he said I would not suffer a lot. Well, I do not know. My
partner is a nice person, he does everything.
After the operation he even brought me the bedpan, now it is not
necessary because I am able to go to the toilet. I do not know how he
will bear it later on.
Thank you for talking, thank you for sitting beside me, thank
you very much.

        In many situations there may be little the carer can do. This
patient said she was resigned  to her fate. I wonder whether she will
have a reconciliation with her brother?

TOUCHING

Physical contact is a basic human need. The positive effects
of touching have been demonstrated by many studies of  which we will
mention two. In an experiment conducted in  a library, visitors who
were almost imperceptibly touched by a librarian were much more
positive about the quality of service than those who were not touched.
In another experiment made at a telephone booth, coins left there
were mainly given back to their owners by those people who were
imperceptibly touched by the experimenter who had returned for
the ‘forgotten’ cash.

Mothers know that touching and hugging reduce anxiety and
pain. Post-operative wounds heal more rapidly if they are regularly and
gently touched.
Touching incurable patients has even more significance.
Illness changes the appearance of most patients. Even those who
manage to accept their approaching death may find it dificult to come to
terms with the symptoms of the illness and the ways in which they
have changed from their usual selves. They may lose their hair, become
emaciated, and have wounds, ulcers, scars and deformations on their
body or face. These changes can generate self-disgust and associated
feelings, and  that others can no longer love or wish to touch them.
Physical contact plays a great part in reducing self-disgust and the
isolation that it often produces. A gentle touch from a carer is
invaluable: the sensation is immediately comforting and restores a
patient’s confidence that a changed appearance does not mean they
can no longer be loved.

I am talking to Ica while putting a compress on her feet. She
is worried by the prospect of many painful examinations. I do not want
to be in hospital. What for, tell me, what for? I am 70 years old, what is
the point? Three years ago my breast was removed and I have not
looked at it since. Who the hell wants to come here? But I had to, I got
sick and they took me in. Also, I was frightened because my stools
were black.  I wonder what will happen with these terible
examinations…..without them they will not know what is the matter
with me. It is terrible. I just want to go home.
When I was leaving I asked if I could kiss her. Yes, she said,
and her old, tired eyes lit up with happiness. I kissed her on both
cheeks. Do you love old people so much? You kiss us even when we
are ugly and unattractive. I used not to love them, but now I do. I did
not love them either, I have to confess. But now I am old and ugly. You
are so kind, loving us as we are.

        This was a rare candid conversation about the happines
which touching can bring. Usually the joy is only manifest  by a glowing,
smiling face.
I am still not very good at touching. The first time Joly
stretched out her hands towards me, awkwardly holding her paralysed
one in the other, I did no more than look at it. Minutes passed before I
realised she was inviting me to hold it. I think the boundary between
undue familiarity and how far you can go with touching and caressing
depends absolutely on the individual. Anyway, I am not in danger of
going too far as I often withold the touches they would welcome.

People differ greatly in how they like to touch and be
touched. There are no firm rules so we must rely on our own sensitivity.
Attitudes towards touching and ‘personal space’ vary between cultures
and individuals. Unsolicited touching is not always received favourably.
The desire to be touched and the amount of personal space required
can change for the same person. Violations of personal space cause
unease. We start learning when and how to behave while we are still
children, and we continue  the ‘school of touching’ as we accumulate
experience. We usually know how we can communicate with or touch
someone. Touch can range from patting somebody on the back in a
friendly, confidential way to overwhelming, vigorous hugging, from
insensitive squeezing to the genle touching of a hand or caressing of
someone’s hand or face. We can trust ourselves and our judgement if
we are in an empathetic frame of mind with a patient.

Emmi asks for assistance with  her lunch. I start helping with
my accustomed energy, saying to myself: Show me the mountain, and I
will move it: clumsily I knock the intravenous drip and jolt the needle in
her tormented arm. Emmi winces with pain. I feel ashamed and
aplogise, promising myself to be more careful in the future. Emmi
smiles, strokes my hand and tells me not to worry.

        It is easy to make mistakes in routine work. At the door of
the hospital ward we need to compose ourselves, and become calmer,
quieter, more serene. Then we won’t upset patients with rash, sudden
movements. If we are not calmly focused on our job, and intent on
good will and empathy, then our time with the patient will not have
been used to such good effect.

Her huge abdomen hangs down to her thighs like  a huge
burden.  Erzsike thinks there is too much water in it. That  may be so,
but there is certainly a lot of extra weight there as well. She is sitting
on her bed  in a  bad mood, her matted hair stands on end in utter
disarray. She is complaining volubly. She has been in hospital for seven
weeks, the doctors do not know what
’s the matter with her and yet
they still  want to send her home. What can they be thinking of, when
she is so very ill…..
I ask her what she thinks. Like the doctors, she also has no
idea. But what does she feel, she must have some notion of what the
trouble is. Yes, it may be cancer, it is possible. The plaster on her belly
is a painkiller. She has just changed it. This one may be stronger, but it
has a lot of side effects, there are sores on her lips and she has a
bitter taste in her mouth and she feels nauseous.
Would she like me to comb her har, I ask her. She jumps  at
the chance, and frantically starts looking for her comb. I carefully start
to comb her. My touch and the combing have affected her so strongly,
she asks me to keep doing it, just to go on with it. She bursts into
tears and says: Oh, everybody is so good to me,  my daughter as well,
when I was home last weekend I was surrounded by love, and it’s the
same now here at the hospital. She  nestles under my carefully fiddling
hand, like  a small child who is  hungry for love. She is not trying to hide
her emotions, but openly displays them, and she asks me to just keep
combing.
The few hairs she has left have long since been combed
neatly into place, but I keep combing her resolutely and she keeps
crying.
Then I stop and she lies down,  rolls onto her side and
instantly stretches out both of her hands  for me to hold them, and  I
enclose her hands in both of mine. She accepts touching in such an
open and unselfconscious way, without any inhibitions. She is
experiencing huge emotions, and does not want to stop crying.
When she is calm again, she starts  to tell me about her
family and everybody, with a great deal of love. She even remembers
her bastard of a son-in-law with fondness. This woman is incapable of
anger…..
We  stay together like this for a long time, her hands in my
hands, and now and then I ask her questions. It is not difficult to listen
to her. She has a colourful, rich outlook on  the world and the people in
it. We are very intimate in our togetherness, and no-one would imagine
that we have only just met.

There is nothing which can touch the emotions more quickly and deeply
as touching. Neither listening, nor saying soothing and comforting
things, nor offering a person whatever they would like,  has the same
sweeping effect. Touching can cause the emotions to burst forth like an
avalanche.

I have to drop in at Józsi’s home  to help out with his bath
time, even though we have never met before.  The nurse called me in
despair saying that she was unable visit them  there were so many
patients who were in desperate need of her.

 

       I contact them, and my
experience of several years prevents me from getting too nervous
about it, but still, I have my doubts. Since I am a complete stranger to
them, they may reject me.  Teréz who is herself also ill, recieves me
with open arms.  I am very touched and gladdened by her reception,
and enter the door with a dazzling smile.  Józsi immediately jumps up
from his armchair and  toddles with tiny footsteps  towards  the
bathroom. From what he says, having a bath is the highlight of his day.
I follow him, a bit embarrassed. They fill me in on the details of the
ritual, and I quickly adapt myself to the usual procedure.  Józsi gets
undressed, he steps into the bath and sits down on a small stool. My
job is to wash him with the shower nozzle. I am so touched by this
infinite trust that even my first touch is full of love. I spread the soap on
this old body with natural, straight-forward gestures, as if I did this
every day of my life,  and as if he was not an unknown old man to me,
but my grandad or my child. I don’t rush things, I would like this
tormented body and soul to have a few really happy moments. Even
long after I have soaped him and washed  off all the suds, I  let the
lovely warm water splash his chest and back for a long time. Józsi
relaxes and gives himself up entirely to the experience. These are
really the most beautiful moments of the day. But they are also the
most beautiful moments for me, somehow the roles get confused: the
one having the bath, and the one doing the bathing, the one who is
helped and the helper, we no longer know who is who, the shared
pleasure kneads us into a common pastry of love.

        For ten years Marie de Hennezel, the French psychologist,
has been working in the symptoms treatment  department of a hospital
in France. They know a lot about touching  there. Bathing for example
is not simply in order to get the patients clean, but is used as an
opportunity to extend to the poor suffering, crippled body gentle and
kind stroking and physical contact. The following quotation is from her
beautiful, moving book called „Intimacy with Death”, which is full of
useful lessons:
“It is possible to care for a body in such a way that you
forget entirely that it is crippled, and the human being is fully
enveloped in tenderness”.(9)

MEETINGS BY THE PATIENT’S BEDSIDE
Today,  Klári is suffering from alternating bouts of anxiety,
and relief. While we are talking it turns out that her malignant  tumour
has spread to other areas, and she is aware of her illness, and the
prognosis.  She is philosophical about her fate, but the journey ahead
is sitll a long one. Each day there are problems to overcome,  and
hardships to deal with.  She lives  alone, and she is used to looking
after herself. But  the  transportation to the  hospital, shopping, the
high cost of medicines, are all problematic.

The whole family moved to the same distrit and they live
close to one another.
She is going home today, and is just waitng for the final
hospital report. She is worried about getting it in time, becasue her
discharge depends on it. Her daughter-in-law could come to fetch her
between two breast feedings, but that would only be possible before
noon, and even then it would be difficult. That is another reason why
Klári is worried, becasue she doesn’t think it’s a good idea to leave the
baby. And there is a delay about the discharge papers.  I try to calm
her down, and tell her that I will be there until 1, she is bound to have
it  by then and I will take her home.
She is very happy,  she is on cloud nine. She is flitting about
down the corridor, telling her room-mate all about it.
Now she is waiting for the doctor. She waits  patiently. She
has nothing to worry about anymore, her problem has been solved.
There is no doctor and no discharge papers.
She begins to get anxious. She is more and more worried.
We find out that the doctor has gone to lunch, or else is in
the x-ray room opposite.
She is standing in the corridor, opposite the entrance, on the
lookout for the doctor.
She is getting more and more nervous. She won’t budge from
the doorway.
I will soon have to go too. I begin to get anxious too- I can’t
just leave her like that.
Finally I say, I have to dash out now, but I am coming back,
and I hope that by then you will have the discharge papers. She is
visibly  relieved.
When I get back I find her in her room. She is wearing a pretty dress,
her face brightens when she sees me: she has got the discharge. She
had just begun to worry whether or not I was coming.

        When we think about  terminally ill patients, our heart sinks-
they have to die, there is no  escape, and they will also have to endure
a great deal of suffering. But few of us  are also aware of the other
innumerable difficulties,  the overwhelming anxieties, and the countless
problems which the dying encounter along the way. The above episode
is just  a drop in the ocean of  the storms and battles which the
seriousoly ill patient, and their families have to endure on that journey.

She is a small, fragile woman. In her flattering summer dress
she looks like a  pretty girl. I compliment her and I add: I am sure that
she hears the same from a lot of people. She looks at me with wide-
open eyes: no, nobody has said that to her, to an elderly 70 year old,
who is seriously ill, no, no-one says that……
But goodness it makes her happy.
But really, why don’t people say that to her? After all she is
beautiful, and she is alive!

The chaos and confusion which surrounds the terminally ill patient
deprives him of the everyday touches and caresses which could easily
still be a part of his life.

 
They are deprived of a lot more things than those which are the direct
consequence of their illness.

I ask her what she does at home, how she spends her time.
I love being alone, I like to be in peace.  God loves me and I love him. I
have had it good, I have had a good life. I have always had everything.
I remind her that she lived through the second WW.
Oh well, I was just a little girl then, I don
’t remember (She was 40 at
that time).
I remember only the pleasant things. I have had a lovely life, I loved
and I was loved.
I wonder how death comes. This is the natural order of life. Everybody
has to die. (The clichés have me fooled for a while. So if one is old
enough, death is obvious. But the more she repeats it, the more
suspicious it becomes. She is trying to convince herself. In truth she is
not happy about it. Does a 95 year old still want to live? No. Not exactly
that.
Would you like to live longer?
Oh no, I am so tired, I have got tired. I can no longer do
anything, other people have to do everything. I am just longing for
peace. I no longer want to live. What God wants to, he will decide. He
knows. I will fall asleep peacefully.

        She  has given up the will to live, she has no more strength
for it, but dying is too big a step to take. Her thoughts and her dilemma
have been made manifest, and she was able to share them with the
voluntary helper.

Gizi is sitting alone at the table. She is obviously worried
about something. She catches my eye .
’Imagine, I could go home to
the pensioners’ home, but the ambulance costs three thousand forints,

who can afford that? What should she do? What is social secirity for, if
she can’t even go home from the hospital. She doesn’t have that much
money and she is unable to go on public transport, how could she? ’

Isn’t there anyone in the fmaily who could  help, or an

acquaintance? ’Yes, my son is already giving me more lifts
than he can,
but he lives far away, way out in the country plus he works and it’s not
always possible for him to get a day off because of me. I really can’t
understand it, and  I have been sitting here fuming, mulling it over for a
long time – it really is criminal! I am very angry, and I am so helpless,
exposed. It is so good my dear that you are here, at least I can get it
off my chest, I have been  seething to myself for an hour.

That she was able to let off steam in this way brought relief
and a release from the accumulated angst. We often try to escape from
such situations: ’Anyway how can I  help, what could I tell the poor
thing to calm her down?

If we could turn  the question around and instead of
saying „what could I say”, and try asking   „ how shall I listen to
them?”, then  we would not feel such helplessness at  „not being able
to help anyway”. The act of listening is what is most helpful.

A 93 year old woman. I am so tired, why am I still alive? I
take no more pleasure in anything. No pleasure at all.
Nothing?
Well, if the sun is shining and the birds are singing, that is a
pleasure. I like that.
And if someone smiles at me. At the pensioners
’ home I have my own
apartment, it is good to be there, everybody is very kind, people are
lovely there. They are really nice here as well. And if somebody smiles
at me, it feels so good. But I have become so tired. Why is life so long?
I have buried everybody. Everyone is  very kind , but they are all
strangers.
I used to be a nurse, I loved my job. „I was  a pair of

crutches  under the sweating armpits of tired people.”

Well, this sentence is so beautiful, that I memorise it right
away. I keep repeating it so that I won’t forget it. She laughs, and
suddenly she becomes cheerful: she says,  ‘Amazing, even I still have
something to give!’

        Can we remember back, the first sentence was: I have no
more pleasure at all…….

        Last Monday Kató was complaining  about her aching legs,
but she looked well  nevertheless.
In just one week her condition has really deteriorated. She
stares straight ahead  of her with inconsolable despair. Her left leg and
hand have become paralysed. With ultrascan they found a dark patch
in her skull, and the numbness  may be caused by that. She is
receiving  radiotherapy treatment, and  they are hopeful that  it will
sort out the problem.
If I don’t recover, I really don’t want to carry on living.  I will
jump out of the window. That is, if I can, and she bursts out laughing.
I just couldn’t bear to live like that. I can cope with the pain,
but the humiliating helplessness, to be so dependent on others for all
bodily functions, peeing, and pooing.
… and everything else that goes
with it. I just couldn’t bear it, I would  prefer death.
Does her family think the same, I ask her, or do they think
that she should stay alive, at whatever cost and unpleasantness.
Well, yes,that is what my family thinks, and she bursts out
laughing for  the second time, and her radiant happy  smile breaks
through her unhappiness. My grandchildren say, Granny, the moment
you can come home, we will collect you, we will give you injections, we
will look after you, just don’t worry!
Her grandchildren,  who are young women,  come alternately
every day.They give her an all over massage with ointments. All this,
despite the fact that they both  have small children, and masses to do.

She is telling me about her grandchildren and I sit and  listen.
Suddenly as  I look into her eyes, I have an overwhelming feeling of
loving warmth towards her.
She is extremely grateful because I sat down beside her for
a short time.

        I wonder why  she is feeling so grateful? Did she cure her?
Did she promise her something? Did she say she would get better? Did
the volunteer give her anything? Only a little time and attention.

An old lady with a kind face, her few thin grey hairs are in a
bun. Her eyes are blue and shrunken from old age, like herself, but
there is a vivid intelligence shining in them.
She is 84. She has a malignant tumour with metastases in
the most unusual places. It’s OK, she says, I am not complaiing,  I have
never been ill in all my life, I can be grateful to God. Now I am ill, I have
to bear it, what can I do? But I would not have chosen death myself
yet, I still have things to do, important things.
What?
I want to help my nation.
?
I am writing its  history, the reality. Because history has been
falsified by history writers.
I am writing down how it really was. My husband was
murdered. Some articles were published about it around the time of the
change-over.  I am still in the midle of writing it, and it’s not yet
finished.
My husband was a very good man. A tank man. He refused
the command of his superior officer, and  did not shoot among the
people

It is good to talk to someone sometimes. It’s  good to talk.
Thank you for listening to me.

It is good to talk sometimes. If there is someone to talk to…

Kati is very silent. I have been siting  beside her bed for two hours
without saying a word. Now and then but her replies are very brief. I
feel uncomfortable. Is there any point in my being here, am I not just a
further burden for her? I feel frustrated that I am unable to help her,
unable to give her anyhting. Maybe she is thinking, along with her
mother, how ridiculous I am, coming here twice a week, and doing
nothing. I am neither a nurse nor a doctor, and yet I imagine that I can
somehow help. I am thinking about  learning how  to give  massages,
so that when words run out, and it is not appropriate to stroke, then I
would have that up my sleeve, as  something to  offer the  patients.
And it would be a pretext for physical contact.  At the same time, I am
amused to recognize that the typical visitor of patients, which  I learned about on the
hospice course, wants to be useful, in any way possible – always
arranging the bedding, bossing,  fluffing around the patient, and
unable to just calmly sit and listen.
At the end of my visit I asked Kati when she would like  me to
come, if I should come and see her more often or would she rather that
I stopped coming altogether. She smiles  wanly and whispers  that she
would like me to be with her whenever I can, as much as possible.

        And it is good to be silent with someone, if there is
someone….

In room 5 there are 3 patients who are in  need of  support. I
am feeding a charming  90 year old woman who has  gentle eyes. I ask
her questions in the meantime. She lives alone, and  she enjoys  her
solitude. In  my experience those who have lived to a ripe old age all
feel well. (Obviously that is another reason they are not in a hurry to
leave the world.) She had one daughter who died when she was 50,
from cancer. Her husband died a very long time ago. Her grandchild
visits her. She has no  pains but she is very weak.
Next to here there is a middle-aged woman who is feeling
very sick. I give her a drink and try to untense her stiffened body,
which is in a distorted position.
The third old woman asks for her lunch but her mouth is so
sore, she gives  up after the first bite. There are indications
everywhere of  blood tests, infusions, dark lilac bruises. I stroke her
tousled hair.
All three start coming to life, and as I am leaving  the room,
they begin chatting to one another.

        Sometimes it is as if a breath of fresh air wafts into the room
with the volunteer: the apathetic tired patients perk up.

Marika is saying good-bye to me: tomorrow she is having a
major operation. She is going to another building , to the operating
wing. She bursts into tears: she is terrified. She has lost 6 kilos, it’s
not a good sign. She is as tiny as a bird. I have brought her a  present,
some snowdrops. How did you suddenly think of me? She asks. Oh,
you are constantly on my mind Marika! She asks me to take her some
wild cherry tea and not to forget that she is waiting for me at home too.

        We cannot altogether make the fear disappear, but we can
diminish the tension during the difficult hours of waiting.

She was a street sweeper all her life. No other patient has
ever held me so tightly. There is no sense of effort or battle in order to
be there, I  am just suddenly present. She has a clean look about her,
and I am trying to discover the secret of how she manages that. I go to
see her for the second time today. She keeps talking, she does not
beat around the bush.

She suddenly looks at me: And how are you? The question is so
unexpected, so straight-forward, so genuinely interested, that I feel
soft and warm current spread through my chest. I experience this for
the first time and realize that it is not just  a poetic expression, but a
real feeling. I am immediately aware of her effect on me. I am surprised
by my reaction. Is it possible that  I can be  so happy about someone
being interested in me? Me, who has been taught only to listen, me,
who avoids  dominating, me, who

Then she goes on. Her children are a burden to her. She
speaks about them quite cruelly, she has ousted them, she can be a
nasty piece of work! It does not matter, I love her exactly as she is. Of
course it’s easy for me, but if she were my mother… I come to  realize

how easy it is  just to accept: I am not bothered.

It is not easy to suppress our judgemental side, which is
always on the ready. However, being able to accept is the most basic
requirement of relationships with terminally ill people. They can be
themselves only in an atmosphere of  total acceptance and the
possibility of development can be fostered only in a non-judgemental
environment.

Stools, vomit, discharges. Bad smells, in fact, a real stink.
These are real trials. Can one get used to them?
I have got it  easy, none of those are my tasks. If a patient
calls me,  I can always go and find the nurse. But sometimes I don
’t. I
am feeding a man who is all skin and bones. He would like to say
something but he is unable to. I can’t understand why, because he is
quite capable, and  he is trying to, but it’s as if he can’t  find the
words.  In his expressive eyes, there is conscious understanding.
Edina and I fuss around him. We can’t  understand what he
wants , and we give up  and say goodbye.
In the living-room we discuss what we should do about him.
Shall we have a look at his nappy? We go back. Under the blanket
there is a flood. The sheet, the bedclothes, the nightgown, everything
is wet. We take the nappy off. A putrid smell, there is something else
here as well. This is the first time I have had to deal with such a
situation. What can I do, I start cleaning it up. Edina lifts the thin body,
I clean the messy sheets  with a wet cloth. I lift the testicles, the sticky
poo is thickly spread on them. With stoical courage  I bathe him. And I
have to hurry, he is heavy for Edina, and the situation is also
unpleasant for the patient. My stomach is turning over, and I am afraid
that I will retch loudly. But then it goes away. I feel that it is not
different from when I washed my children when they were small. The
same gentle care, the same effort. I love this  foreign body.

Difficulties in caring for the sick. Sometimes we dare to
oppose our fears and sometimes it turns out that we have nothing to
be afraid of.

I only  want to feed her, but she wants to feed  herself. She
would like to sit on the edge of her bed, but she can see that the
shame  around her lower body cannot be concealed any more: the
sheet is dirty with discharge and urine. We start tidying up. There is
quite a lot of faeces as well.
In human beings, when one is in such an intimate contact,
sympathy is automatically aroused.
Oh, I am so ashamed, it smells so awful.
I could say that mine has a scent like lily of the valley, but I’m
afaraid I would be lying to you.
She laughs light-heartedly: At last an honest word!
We both laugh, embarrassment and shame disappear.
My maternal instincts are aroused, the memory of changing
my children’s nappies, the defencelessness of my children. Is this why
sympathy is so quickly awakened? Or because it is sometimes difficult
to empathise with  pain, we may feel shame instead?
One day we may be in the same situation ourselves.
In the meanwhile we talk. Her husband is 13 years younger
than she is. He is a very good man. They have a 22 year old son, a
good boy, and  clever too,  studying law at University. We chat for a
long time. She is lively, almost in a good mood, but finally she starts
crying. I would have no problems, it’s just the medicine which has
destroyed me!

        What a lot of things in such a short meeting: just a small idea
of helping someone with their lunch, then shame and embarrassment,
followed by relief and laughter, sympathy aroused  on one side, candid
opening up on the other.

        I am feeding a very old woman.  I am not sure if she can
even see. When she is finished eating,  she beckons to me urgently.
Not in an offensive way, but like someone who is ill and would like to
get back into their bed.  I ask for her understanding, I have to go step
by step, before I can help her back into her bed. First I have to stack
the plates which are in front of her, then  remove the chair which
supported her back, turn the bedside table around. When I realize that
she cannot see, I can understand why she is impatient, she cannot
know about all the little tasks which first need to be done. With great
difficulty, and my help, she is able to get back into her place. With
loving kindness, I tuck her in, and I do not hurry away. I bend over her
and ask about how she lives, when she is not in a hospital. She tells
me about things with pleasure. She is 90 years old and she lives in a
pensioners
’ home. She has a separate room, and never leaves it and
nobody ever visits her there. Even so, she is content, she feels well,
she is never sad. I get on very well, I listen to the radio, TV, music, I
look back on my life, I feel very very well. I only ever think about the
good things, my mother who loved me so much, she always held my
hands when I was little,  and she looked after me when I was an adult
as well. It is too difficult for you my little girl, I will do it.


My husband was also a very nice man. A friend of mine said: ‘ your
husband, Erzsi,  looks at you with  eyes like a faithful dog’, she envied
me. My husband loved me very much, I did not love him so much, I fell
in love with someone else, and wanted to leave him,  but then my
mother got ill, and I  had to nurse her. She died of  stomach cancer.
Have you got children  Erzsike? I had one son, he died of cancer of the
larynx, when he was 38. It was horrible, but I remember only the good
things. But at the time, when I was informed about it, I wanted to jump
out of the window, but instead  I stayed with him until his death. My
husband died too, also from cancer, but he lived to a ripe old age. It’s
strange, but I remember only the nice things.
I’ll  come again  next Monday, we will meet if you are still
here. You are so kind, my dear, but I would rather not, I hope I won’t
be here, but at home, in my room.

        In books about the theory of communication questions which
help other people open up are called „door opening questions” A
sincere question, and the elderly woman opens her door immediately
and lets the mysteries of her soul emerge from  it. This soul is content –
she  remembers only the good things, she does not nurture
resentment towards people, nor does she rail against her fate. It’s not
just stressful and difficult  issues which we talk about. We can  share
all kinds of feelings with others.

A middle-aged blonde woman, touch of  make-up on her well-
preserved face. After just a few questions, she opens up and offers me
her whole life. She was operated on for a malignant colon tumour and
she is getting chemotherapy now. She does not know if it has spread,
but she has several months of chemotherapy ahead of her. Have you
asked the doctors whether or not the cancer has spread? No. Why?
Should I have asked? I smile. No, no, only if you are interested. If you
are not interested or you really don’t want to know the answer, then of
course that’s all right. Yes, yes, I want to know about it, I would like to,
yes.
She tells me that she is reconciled to bad news as well, what
else could she do, but it makes her angry,  because up there, things
were not invented all that well. Why is all this suffering necessary, I do
not agree with it. OK, I can accept that we all have to die, that is in the
natural order of things. But why do we have to suffer so terribly? Why?
If we could at least see some benefit from it. You know, I no longer
believe in the things  I used to when I was a child,  that God inflicts
suffering on those whom he loves. I do not believe in it. Although I
could be happy now, because I could see that God must truly love me,
because I have an abundance of pain. God is very generous to me
when it comes to suffering. You know, that includes a lot of mental
suffering as well
… My son died when he was 35, there was a problem
with his heart. My husband has also died, the first one as well,
he was an intelligent, very knowledgeable  man, but he went insane,
and finsihed up in a mental asylum. I remained loyal to him till the very
last, I looked after him and I did not let him be institutionalised, but in
the end there was no other way.  And what did  fate deal me? My
second husband, who was also a very wise man, he also died from
softening of the brain. I suffered tremendously because of the deaths
of my beloved son,  and of both my beloved husbands. Now I  am also
worried about who will look after me. My grandson who is 24 visits me,
but he works and has no time to care for me, it really  is a big problem,
what will happen to me?
She talked for a long time, while I just listened to her. I say
good-bye leaving her tortured questions unanswered. She cannot
thank me enough, she is so very grateful that I sat and listened to her.
She does not say: Are you kidding, are you leaving without giving me
any good answers?

Why is there immeasurable suffering on earth? Is there any
sense in any of it? At the end of life, as well as the questions which are
most difficult to answer, there is the similarly torturing question: who
will look after me?

A tiny little old woman – her  improbable blue eyes and  her
snow-white hair make her look like a fairy tale figure. She is charming,
we take her to our hearts, despite the fact that it soon turns out that
her life is not free from intrigues, malicious hypotheses, envy. In the old
people
’s home where she comes from, everybody else, except for her is
a wicked trouble-maker.
One listens to her and smiles: despite all her endeavours,
she does not manage to overshadow our first impression.
She is simply human and, well, my goodness, none of us is
perfect.
I visit her over a period of several months, this is a long
relationship. First on the ground floor, then on the first floor, in
the  ‘terminally ill’ section.
She is always radiant when I arrive. She often speaks about
death. She has reached a ripe old age, and she can be grateful to God,
there is not a long time left now. She will fall asleep peacefully, it would
be nice not to wake up in the morning.
But in reality, she is not thinking of leaving. She is just trying
to convince herself: what does a 96 year old still want, nobody lives
forever, but she is waiting for the  spring and watches the small  piece
of the world which is still allowed her through the window.
She  is scolding the nurses because they do not change her
nappy, they do not care for her.
One day I run up to her and ask her unexpectedly: when is it
your birthday, aunt Panni?
Today, she says.
Fall these months and I haven’t bothered to ask her, just
now, on her birhtday.
The nurses think she is senile, they just wave their hands  in
resignation, but then they see her case papers, and she is right: the
following day is her 96th birthday.

Next day I arrive with flowers and a home-made cake. The
doctors and nurses gather together, and we imrovise a little
celebration in the dining room.
Aunt Panni is so overjoyed, her tiny body is floating
somewhere several feet off  the ground, she is behaving like a prima
donna, graciously accepting the good wishes of her admirers.

        Was it by chance? Or special intuition? It is difficult to find an
explanation for it. But one thing is for certain, small miracles do happen.
In Aunt Panni’s life this small miracle was as momentous as travelling to
the moon. We may sometimes think, despondently, that  there is
nothing we can do for the incurable patient. And yet sometimes we can
offer them the whole universe.

A tall old gentleman in elegant pyjamas. I stay with him for
almost an hour, he tells me his whole life history.  If I had ten
daughters they could not be any nicer than my daughter-in-law is. She
looks after me, she does everything for me. They bring me in, take me
home. I come  every month for chemotherapy. My little daughter- in-
law brings me, but she does a lot more. She sleeps at my place for two
days on those occasions because I am very ill after the chemotherapy.
She calls me six times a day to ask me how I am. If I do not answer the
phone she comes over to check up on me. Although she is working, as
a chemical engineer.
They used to live with us, we had a huge flat, with separate
entrances. They lived with us for seven years, our little grandchild was
also born there.
My wife died 5 years ago within 3 days. I just couldn’t get
over it for two years, and then only very slowly did I begin to recover.
Fifty-four years together is a very long time. She went to get some
flowers because we were going to my son
’s for a birthday celebration.
She collapsed in the street and  was rushed off to hospital in an
ambulance. Brain embolia. I talked to her in the ambulance and in the
hospital, but she then lost consciousness and  died three days later.
My little daughter- in -law has been here recently just to say
that my son cannot come in the afternoon, he is in the countryside, I
should not expect him. She is so nice, she just came to tell me, so that
I need  not wait in vain. Of course we also gave them a lot of things.
My wife was very generous, although she had a very serious job, and
often had to travel abroad. But she was so good at keeping the family
together, she had such a lot to offer- everything…..
We often went abroad, we travelled all over Europe. We
went to Vienna  in a hovercraft  and when we travelled further, we
went by car or by aeroplane. What a lot of places we have been to,
and what a lot of beautiful things we have seen! I was an architectural
mechanical engineer, but I also dealt with sportspeople, mainly with
football players, we travelled with them as well. So many experiences,
so many interesting people, so many good friends!
I have had a good life, but only because of love – because
believe me, that is the most important thing!


Who can we tell our life’s history to? It is not just someone
who has time. A family member or a well-known visitor may sit  down
next to our bed in vain and they can spend hours visiting the patient in
vain. We cannot tell our life story to those who are a part of it. You
need a stranger for that. A stranger who knows nothing about us, who
is interested in us, who wants to get to know us and arouses our
desire to communicate. One of the  „advantages” of the volunteer is
that they are strangers.

I greet him as if we are old friends. The second meeting is so
much easir! I am more confident,  my questions are more specific. He is
sitting despondently near the table. He went  home at the weekend,
but there was not much joy in it. He could neither sleep nor sit, his
abdomen is full of water. OK, so he could watch the TV sometimes,
which he can’t do here, but mostly he was lying in bed, just like in the
hospital. But he managed to make all his final arrangements, and  he
even said good-bye to his flat. He knows that he will never return
home again, there is no way back from this illness, from this condition.
He is waiting for death, which he is reconciled to, but he is frightened,
very much afraid of the suffering which awaits him. What will it be like?
How will the end come?

These are questions which nobody can answer. We have to be
satisfied with what we can offer: our presence, listening,
understanding.

I am feeding Erzsike.’Are you from the Maltese 
Service’? ’Well, we do  love and we do serve, but we are called hospice

workers’ ’It is a great thing what you are doing. She keeps expressing

her gratitude without a smile, almost coldly. Oh, no it is not such a big
thing, I say modestly. ’But it is an enormous thing, it means a lot to me

that someone feeds me, turns me over, to me that is a big thing! She
keeps emphasising the word „for me” almost angrily.

        There are no  visible results, paralyzed feet cannot start
walking, wounds do not suddenly heal, the deterioration of the body
does not reverse, but neither  does it stay like that, thanks to our
diligent activity. Sometimes we manage to relieve the suffering,
sometimes there is a barely discernible, radiant smile on the face of the
patient, sometimes there are clear verbal messages of gratitude-signs
to indicate that our visit was not in vain. Sometimes there is no sign,
the patient keeps every thing to himself, and this makes us hesitate.
But we do need reassurance, and support, in order ot carry on. We
need faith in the belief that we are needed.

HUMOUR

She is showing me pictures of her family. In one photo her 9
year old granddaughter  is surrounded by  6 to 8 dolls.  She is holding
some of them, and two others are sitting in front of her in the push
chair. She has a big family, says Marika,  we have even applied for child
support. At the moment I pay her 500 HUF  per month for childcare
maintenance!

Humour is like inhaling fresh air when we are out of breath,
when we can rest after a strenuous walk, it is like  being able to put
down our heavy load, after carrying a burden for a long time. We will
have to continue carrying the load, we have to go on walking and we
will fight for our breath  again, but with renewed strength.

She is a small, thin woman with an exceptionally kind face,
wearing a blue nightgown, and sititing on the edge of her bed, smiling.
Laughingly she tells me:  I am unable to die, although I am
96! The ambulance brought  me here from the pensioners
’ home where
I am living, thinking that it was my last excursion and you see, I am
here, I have recovered, and how many times I have done so in the last
5-10 years! But I always recover, I am simply unable to die. What do
you say to that? She laughs kindly, a bit craftily.  She tells me  more
about her life  in a most charming and amusing way. She has 5
children, one of them died at the age of 60. Four of them are
daughters.  One of them is a lawyer, she is very proud of her. Do your
children visit you? She is the only one who does not, she does not
have the time. She is 70 years old and  travels a lot and writes about
her experiences. She has written several books already.  She does not
visit me, she is too busy. But the others do. And the grandchildren as
well, one of them  especially comes very frequently, although she has a
sick child. I love life, you know, I have read a lot up until now, but my
eyes have gone all funny, and  I cannot see without glasses. But really,
don’t you find it funny that I am not able to die? I shall return  to the

pensioners’ home l
aughing, what a shock I will give them! It makes me
chuckle just to think about it!

        It is very fortunate if we can amuse ourselves, but how much
better it is to share a good laugh with someone else. Recalling our lives
with a cheerful and happy outlook,  can be like a cheeky rebuff to
approaching death.

Julika’s daughter does everything  properly. It’s true that her
breath smells of alcohol, and she seems to be a little distracted, but
she treats her mother very well. She pets and strokes her, kisses her
face, her hair, her hands. She even jokes with her, which I especially
like to see. I watch  Julika’s reaction: even  with her imminent deah,
she is still able to smile at something funny, at her daughter’s humour.
I have seen family members, who visited their dying realative with
thesolemn demeanor of a  church-service and the obligatory  gloominess of

a mourner,  so as not to offend them with a smile or an unserious remark.

Gabi has accepted and has made her
mother accept  as well, that because of her illness, she  has reverted
to a dependent, child-like  state as a patient.  As a consequence, she
can expect the same sort of treatment as a child might receive – baby-
talk, and lots of cuddling and spoiling.  Gabi does not think it is
offensive to tell her paralysed mother: which romper suit to wear to
play in the sand-pit, and  what to choose for today, playing in the sand
or walking. Of course this may be a dangerous approach, because so
many patients suffer precisely because they are treated as if they are
no longer  compos mentis, and  they do not talk to them on equal
terms. But Gabi only jokes  occasionally, and she can be serious with
her mother and  talk to her as an adult, but she allows herself
playfulness, which her mother apparently accepts. Thinking about this,
I ask myself: is it possible that in a world where achievement is of
paramount importance, the only way we can accept ourselves,
as ‘idlers’, and as ‘good for nothing’, is when we were  sick  children –
ones who are allowed to do anything. Children are loved for
themselves.

        The patient’s daughter knows her mother, she knows exactly
where the limits are, how far she can go with her joking.
Communication with a sick person requires  sensitive awareness and
humour is an even more delicate area. But  that is not to say that
tension- releasing jokes and cheerfulness should be exluded from the
patient’s life. We should  be careful and  moderate, but let’s not think
that the patient expects a mournful expression and gloomy, tragic
messages.

Kálmán is a young  and cheerful man and his sense of
humour is his main weapon against his incurable illness. I am laughing
so hard there are tears running down my face, when I hear his
improvised monologue  about his own funeral. He laughs a lot too, and
is really pleased that he has such a good audience for  his jokes. I am
imagining that  we can talk openly about everything: so I set about
asking him a rude question: And what are you going to wear  on the
coffin? Jeans or a suit? I am going to be cremated, he answers with
profound sadness.
I turn crimson from shame, but he rouses himself with a
shake, winks at me, and he’s off again with his performance where he
left off.

It is a well known phenomenon that sometimes we go too far
in making fun of ourselves, and in our self-criticism, but at the same
time we are shocked  if our listener
even faintly agrees  with one of the details. Luckily humour can help us
through the embarrassment caused by our  mistakes, as the above
example illustrates.

She is always joking, and so am I.  A bantering, teasing
realtionship is created between us. She has cancer, she has been
battling with it for years, sometimes it gets better, sometimes it gets
worse. She is a regular hospital in-patient.
I might be moving in, upstairs, for the winter she says.  What
could I do at home? The flat is cold, there is no heating from either
side,  the Danube is my neighbour. I was sick this time as well, but I
was lucky because someone from the corridor could se me. I was lying
crosswise in my bed. They called the ambulance.
She remembers an old story:
My father was 70 years old. My daughter, give me some
medicine, for goodness sake. Medicine? OK here you are. I happened
to have some laxatives in my hand, because I needed them. Would you
like one more? Yes, why not?
After a few hours my father gave me a  good telling off. My
girl, what on earht  did you give me? It has given me the runs……..
Laxative?!  Damn it to hell why, when I had a headache? You
didn’t tell me that.
The old man chased me so much that I had to escape on my  bicycle. I
was an adult woman by then, not so young any more.
We laughed light-heartedly and I look at this naughty little
woman in a different light.

        Laughter in the hospital. Laughter with  a terminally ill elderly
patient.  We took some time out from the difficult march towards the
terminal. Disease, pain and death did not exist for a few minutes.

He has only half a  leg. I offer him some scones. He likes
them,  he jokes cheerfully, I should come the next day too, and he
winks. Later on he calls after me again down the corridor: I am waiting
for your visit  tomorrow, and bring a lot of these!. The others also cheer
up and  everybody smiles.

Humour is contageous, but it is not something which we should
immunise ourselves against.

Look, I’ve got two plasters on me, right here. You know, so
that my neighbour does not hear me shout. He winks, laughs
waggishly. I am smiling too, and the smile stays on my face the entire
time I am with him. Because he is telling stories in such a funny way,
with a really good sense of humour. He is pleased that I am enjoying
myself with him. Have you got a wife, a family? Oh, yes, of course. My
wife has just been here. She is so small,  smaller than me. I said to  her
50 years ago: Irén, I want to go and speak to your parents,  but I have
to confess that I am really scared of parents. I ran after girls,  I can’t
deny, but never had anyhting to do with parents before. My parents
were one thing, but someone else’s mum and dad? I was scared of
them. But somehow or other, I found myself on the train, with this tiny
girl. We rattled along for about 360  kilometres.

We travelled  all day, stopping at every single  station. I sometimes
asked her: Are we still in Hungary? Or have we crossed the border?
Finally we got off the train in Mátészalka. Opposite the railway station
there was a buffet for passengers. I said, I’ll wait for you here while
you go and meet your mother. Of course she did not leave me there.
We got to the gate, and her mother was standing there. The girl was
going in, while I  just stood at the gate. The mother says: OK, since
you have come all this way, why don’t you come in? So I went in. When
we were  alone, the mother says: listen to me, I have raised my
children with difficulty, all alone, do you take my daughter seriously? Of
course I do, I said, would I have come here to the back of beyond, on
the rickety old train to meet you if I weren’t serious about her? SoI
married her. That was 50 years ago. I was a mechanic, I earned well.
We lived there, with the mother. One day I hurried  home from work
and asked my wife to make me some bacon and eggs.  She said she
couldn’t until her mother came home from work. It turned out that
everything was kept locked up: the larder, the cupboard, the pantry,
everywhere there were locks. The mother had the keys. I took a
crowbar and  wrenched off all the locks. I had a good meal,  and made
a pile of the locks in the garden. In the evening I said to the old
woman: if you want a museum, you can find some locks  in the garden.
This is where the tumours are in my stomach, here and here.
He takes my hand and puts it to his stomach. Can you feel them? They
are there. I have been operated on, but it’s no good, it has spread to
my liver as well. So, there you are. I shall depart, other people will
come after me, they will close the door. I can’t understand it all.  Can
you understand? This is  symbolic is that clear? Not really. And if I say,
through the window, through the glass, can you understand?
Unfortunately not.  Oh you, you are so nice, you cannot understand
anything. He laughs heartily: You know, I  have studied psychology as
well. So have I, I answer, but not thoroughly enough, it seems. We both laugh.

        These anecdotes are simply the perusal of a life story.
Looking back, remembering, all laced with humour. The styles are
different. The essence is the same.

HELP WITH  GRIEVING

I dash to Békás, taking with me some things left by two
widows for the hospice volunteer. I had never met them before,
someone else had been their visitor. The first elderly lady gives me all
the goods, and then shows me a photo of her husband.  She detains
me and dashes off to fetch the photo albums. She showers  me with
masses of photos, and with the flood of her memories. She talks to me
about her family and her life with such pleasure that it is as if she has
forgotten even her despair. I arrive there, a comlete stranger who
could be anybody, a transport worker, taxi driver,
and in 3 minutes we are in the middle of her life. She laughs and cries
by turns, and is disappointed when I have to leave.
She sees me out. I give her a hesitant  kiss, when we say
good-bye, but she draws me closer, hugs  me tight.
The other elderly lady  is more moderate. Or is she just
sensing that I am in a hurry? (in truth I really do have to collect the
children from school soon). We concentrate on practical things, how to
collapse the wheelchair so that it can fit into my car, how will we also
get all her bags into the car? When I am leaving, I ask if I can give her
a kiss. Her reserved manner melts in an instant,  a huge smile spreads
across her face and she embraces me with tears in her eyes.

        Where is there someone who will listen to me? Where are a
watchfull pair of eyes? Where is a warm human body I can embrace
and nestle up to? A basic aspect of the hospice approach is to give
support throughout the mourning period. The relationship with the
patient’s family does not abruptly end with the invalid’s death. By
means of warm and caring phone calls and visits, which gradually
decrease with time, the intensity of the relationship is  slowly reduced.
It is advisable for volunteers to learn about the psychology of
mourning. Apart from information which is obtainable from specialist
literature, with the help of a training course for grief counsellors,
organized by the above mentioned Eclipse Association, volunteers  who
are interested  and have and aptitude for it,  can  organize groups and
help mourners to cope with their loss at regular weekly meetings.

 

 

 

 

 

ETHICAL ASPECTS OF  A SUPPORTIVE  RELATIONSHIP

The victory of truth is waiting for the gentle and the patient.
János Pilinszky

ETHICAL QUESTIONS OF  A HELPING RELATIONSHIP

The relationship between the volunteer and the patient is an
assymetrical one. The helpless patient can easily become the
subordinate one. The manner in which the help is offered is entirely up
to the hospice worker- how much help, when to offer it, and even
whether or not to withhold help completely.  Therefore, the volunteer
can have tremendous power over the patient.  In these sorts of
unequal relationships, it is of utmost importance that ethical principles
are strictly adhered to.

The task of ethical education or self-education is to develop features
leading to a behaviour which is respectful of ethical rules.
The volunteer makes the decisions about how and when
they can offer their services. Those decisions are for them to make. But
a volunteer cannot, on an appointed day,  change their minds just
because they do not feel like it. The fact that they are unpaid
volunteers does not mean that they can decide to go or not on a given
day. Of course there may  be genuine excuses, such as  an illness or a
family or workplace commitment which cannot be postponed, but in
such an eventuality they have to notify the hospital in advance. Apart
from the frequency of the service, they are also responsible for the
quality of it. The assistant is obliged to give their best to the patient, to
provide for their needs and to give them support and sympathy. They
cannot for example, leave a patient alone, before one of the family
members who will take over the nursing, comes back, if they have
agreed on that.
The volunteer has to be able to be clear about their
personal  boundaries. They have to be able to say no for their own
sake and for the sake of the patient.  The patient may need more visits
or the family might need more help. If we want to be obliging, and
meet these extra demands, then sooner or later, they will have to face
the consequences of undertaking too many tasks. By means of saying
small „no”s, we can avoid the big „NO” which would require a more
emphatic force,  and which may even mark the end of the relationship.
But being a being a hospice volunteer however, also  means
that, sometimes, apart from the regular work which is scheduled,  we
need to be flexible, and  prepared to be present for half, or even a
whole day during an agonising crisis period, and according to needs.

EXPERTISE BOUNDARIES

It is the doctor’s task to inform of  the diagnosis. This is his
field of expertise. He knows the illness and the  probable outcome. He
can give an expert’s answer to all the questions which might arise.
Today, even the Health Care Law  states that patients have  a legal
right to be informed of a diagnosis. But in Hungary it is still often the
case that a patient is left in the dark, or else a relative is told instead.
According to the hospice approach, honesty is of fundamental
importance.  Acceptance, reconciliation, putting one’s life in order and
making arrangements can only happen if the patient understands that
his illness is incurable.

The hospice volunteer knows exactly what the illness is and
they are also aware how harmful secrecy can be. They know how much
dishonest role-playing can divide the patient from his family members.
The non-verbalised  secret can create a real barrier between them, and
as a result, everyone is a loser: the patient who is left hopelessly
alone, and the relative as well, who recognizes in his severe grief,
what they have missed by not being open and honest with  each other.
The volunteer possesses important information, but they do
not have the right to  disclose it all to the patient and their family. So
what can they still do? They can gently help the relatives realize, or
they can encourage situations in which more open communication
becomes possible. It can sometimes happen that both the patient and
the family are able to talk sincerely to the volunteer, so often it is
enough to sit down together at the patient’s bedside, and in that
situation any inhibitions around communication can be dissipated.
But what should we do if the patient asks us directly? We
know that we cannot divulge the answer, but we also know that if we
tell a lie, we create a communication vacuum. We cannot have ready-
made answers to hand, which we can use if necessary. The most
important thing is that we do not run away from it,  physically, or give
an embarrassed, misleading answer.

„I would like to tell you about an  event which a young nurse
has recently experienced. The surprise, as we shall see, struck her in a
very personal way.  She was admitting a woman of her age into the
hospital, who had an inoperable tumour and who had been informed
about it. When she had  made herself comfortable in her bed, the
nurse sat down next to her. The young patient was touched by this
gesture of „accessibility” and established a spontaneous contact by

taking the nurse’s hand. She looked into her eyes and asked: „Tell me,

do you think, I will die?”

The nurse felt that she could not breathe. She was
completely undone, and had no idea what to say. So she remained
silent and unable to offer any advice,  but she stayed put. She did not
try  to escape, to evade the question, she did not want to suppress
the tears that came into her eyes. The situation required her to  „not to

tell the truth” but to remain honest, that is, in complete harmony with

her own feelings, to stay sincere with the feeling of total helplessness.
After a few painful seconds the young patient regained her voice: „I

understand. Thank you.  Let’
s talk about something else.” (10)


        Sometimes patients genuinely  want to know the truth.  They
are aware that there is something seriously wrong, and so they ask.
Other times they ask because they need reassurance, and they want
to be told that it is not true. Finding the right answer is a task for the
volunteer which is seemingly impossible to get right. On the one hand
we do not want to alienate the patient, but  on the other we must not
divulge information which it is not in our jurisdiction to offer. We could
reply, for instance, that we do not know everything, but since they
have a right to know,  we could encourage them to direct their
questions to the appropriate person. But first of all the most important
thing is to make them feel that the family and the hospice team will
never leave them isolated, and that they will receive all our loving
kindness and care. Because, to quote Simone Weil: „In the face of
death, we can trust  only love!”(11)

Marika says  there is a big problem, the section between my
womb and rectum has been torn.  She says that she is  in despair, but
she does not appear to be so, although she cries for a moment or two.
She is pottering  around her bed, arranging things.
’I know that there
is no way out, I am incurable. But it is so hard! It is not good at home
either, there is nobody to nurse me and I cannot stay here. My
daughter’s flat is small, and she has a small baby, so I cannot go there,

but I wouldn’t in any case. I need peace, children tire me out.
I don’t know how long this is going to take, it would be so
nice if at least I knew.
What do the doctors say?
They say not a thing in the world.
But have you asked them?
I keep asking them all the time,  but they say, they do not
know. I think they do, but they don’t want to tell me.
Marika, if someone really wants to know something, they can
make certian that they are listened to. Are you sure that you really
want to know? Do you want to hear that, let’s say, you have  two

months? Or if they said two days? Would you like to hear it, would it be
good for you?
Yes, I would like to know. If it is two days, I would like to
know that. And believe me, I really do know how to ask questions, but
they do not tell me.
I am surprised at how openly we are talking. Of course I am
very careful, but I feel that my relationship with Marika is sufficiently
open, and  that I can allow myself these frank questions.
She spices her sentences with real humour. First she cries,
then she laughs, up and down with the  flow of her emotions.

Would she really like to know it so much? Is it possible that
she does not get honest  answers to her  open quetions? Let’s let the
patients decide what they want. If it is really so important to her,
then she should  pursue it. It would be a big mistake to helpfully rush
of to talk to the doctor, and come back with the answer on a plate.

AUTONOMY
The principle of respecting autonomy means recognising that
everyone has the right to  make their own decisions about their own
affairs. All too often, this is forgotten when we are dealing with sick
people. In the case of  normal, mentally stable adults, there are strict
laws and ethical principles  which require that  respect for the
autonomy of a person is adhered to.  One has to strive to reduce the
helplessness, and increase the autonomy of a sick person. Possessing
information is a key factor of a patient’s complete right of self-
determination. Holding back information increases  the sense of
defencelessness while posessing information increases the chances of
the individual to direct their own fate. The obligation to tell the truth is
one of the aspects of this principle.  A sick person must never be
deceived or misled, even if they are well-intentioned lies.

THE PRINCIPLE OF „CAUSING NO  HARM”: OBLIGATION TO KEEP
SECRETS

This ancient ethical principle  comes naturally to all voluntary
helpers. But we have to be very clear about our intentions and to
realize that it is not always possible to achieve what we set out to do.
We can cause more harm through ignorance and thoughtlessness,
than if we did nothing at all. Moving a patient when they should not be
moved,  giving a massage, stroking oedemas, or administering
medicines in the wrong order, can all be dangerous. We need to
emphasize that the volunteer worker is the member of a hospice team,
where everyone has their own role. The volunteer must consult the
doctor, nurse, and physiotherapist before starting any new „activity”
with the patient. How can we decide what sort of help we can safely
offer  the patient? In general we can say  that any task which a family
member would be able to perform at home, safely, is what we can do
as hospice volunteers. It is also important to remember that we only
carry through with our intention to help, if the patient wishes it.
The oligation to keep secrets is also a most important tenet
of the principle of “doing no harm”. It is indispensable for the formation
of trust towards the helper. A volunteer may be the recipient of
innumerable confidential information. It is forbidden to abuse this
confidence, and to disclose such information to others. The obligation
to keep secrets, also applies to
the relatives of the patient. Whether it is the family member who
discloses private information to the volunteer when the patient is
absent, or the patient shares with us something about a family
member or himself,  we are obliged to treat it confidentially in both
cases. If we feel that we need to discuss an issue concerning the
patient with  someone else, or that it might be helpful to seek
professional input,  then let’s ask for his permission first.

THE PRINCIPLE OF CHARITY

In the case of  volunteers, the principle of charity  requires
that  we act entirely in the interest of the patient,  relegating our own
interests to the background. It is often difficult to judge where the
boundaries are, or whether or not what seems to be to the benefit of
the patient at the moment, may not  in fact be harmful in the long run.
Volunteers are entitled to help with supervision, which in these
situations  would be helpful. Self -development, the continuous pursuit
of professional knowledge, and the preservation of mental health are
essential for the volunteer in order to practice the principle of
beneficence.

THE PRINCIPLE OF FAIRNESS

Volunteers must strive to rigourously avoid  applying unfair
discrimination.
There is no room for the disadvantageous discrimination
against a patient on the basis of their gender, race, political, religious
or ideological convictions. The volunteer has to try to put aside their
personal prejudices,  and antipathy, ethical judgement, or aversion
should not influence their level of assistance. In case the volunteer is
not able to overcome their  strong feelings of antipathy, they can ask
another volunteer to take over their role.

ACEPTING REMUNERATION

The mother of  seriously ill Anna offers me a slice of cherry
cake. Last time we had  talked about how difficult it was for her to get
used to her colostomy. For years she kept shying away from people
and she had acquaintances who would never accept food from her,
they were probably disgusted. So now I can reassure her that not
everyone feels like that, and I graciously accept a piece, and enjoy
every morsel.

When the mother sees me out, she gives me a lily bulb,
which is  breathtakingly beautiful when it is in bloom in the  spring. I am
going to plant it with my daughter and watch for its arrival every May.

Volunteers are strictly forbidden to accept money or any
other present. Fortunately patients and their relatives are aware that
the hospice service is free of charge so we do not have to battle in
order to return their “gratitude gift”. But it does happen that  they are
so thankful for the help, they try with all their heart to offer a token of
their appreciation – to return  our care in some way, or express their
gratitude. It is very difficult to refuse such presents whcih come straight
from the heart. There is a simple procedure for preventing this. The
family usually asks about the activity of the hospice team, about the
essence of volunteer work and gratuity. It is worth saying on these
occasions that volunteers are strictly forbidden to accept anything. In
this way, you can avoid any embarrassing situations which might arise
later on.
But you do not need to carry this rule to extremes and refuse
a  slice of cake, or a flower collected from a garden, and hurt the
feelings of  a person who would love to give us something with all their
heart.

IT IS NOT IMPORTANT TO BE ALWAYS RIGHT

She used to be a teacher when she worked. She asks me if I
have children and where they go to school. I tell her that my daughter
is an especially sensitive soul, so we have found a special school for
her. She responds almost angrily that you do not need a special school
just because of that,  every teacher does their work with all their heart,
why would they become teachers otherwise?
Do you also have to pay school fees?
Yes, 5000 HUF per month, but that includes all the books and
materials  as well.
And if someone cannot afford to pay, what  happens to those
poor children?Do they just go to blazes? How do you feel about that?
(I cannot find an  answer, and it’s not her argument which
dumbfounds me, but  the fact that she is taking  it out on me,  that
there are such social inequalities. Yes, I can afford 5000 HUF monthly
fees for the school, and it is a ridiculous sum compared to  other
nursery schools  or school prices, but I can also afford to buy fruit,
while other  families  cannot. Should I therefore not give any fruit to my
children? And yes, there are people who take their children to more
expensive sports or other activities, while others cannot afford to, so
what should they do?

Furthermore, since there is starvation in the world, how dare we eat?
In case of my older children, the only question which came up was
which school they belong to. And had we also gone there? (And in
those days I couldn’t afford private school fees, nor buying fresh fruit
either.) Today, parents who do not investigate which type of school
would  best meet the needs of their children, is considered
irresponsible.)
And what does this school have to offer, which is so
superior? Don’t tell me that it’s any better than other schools – they are
just after your money! Teachers are the same in every school, they
approach their jobs with responsibility and they are dedicted to helping
students make progress.
We almost begin to quarrel. I have to make enormous
compromises, saying yes, teachers are usually good, students
remember them all their lives and are grateful to them, but when they
humiliate children  and  destroy their self-confidence, and in that way
cause permanent damage, then it is a different story. In this school
teachers have to follow definite principles, there are no bad marks,
black points, there is tolerance and individual development, they deal
with the pupils according to their own abilities. They are joyous about
their  progress according to their individual capabilities,  and they do
not evaluate them according to a fixed yardstick.
Oh really now! That’s all airy-fairy nonsense. There is need
for discipline, appraisal, and keeping up with the ranks. What shall I
do? I am fighting for the beloved teachers of our beloved school, for
their method. But I am polite, careful, I yield to a large degree, but I
keep fighting. Why? Why is it so important for me to be in the right?
Here is this poor old woman, who is very ill and sad. Why can’t I let her
go with something of her own to hold on to from this world?

Truth is a fundamental issue for all of us. We live in constant
readiness to defend and fight for the truth, as we see it,  at any time.
It is painful if someone questions what is important to us, things which
we believe in.  But it is possible to learn to be more tolerant and
understanding of  opinions which may seem very alien to us,  without
necessarily relinquishing our own views. This is a good attitude to
adopt under any circumstance, but when we are dealing with the
terminally ill, then it becomes an obligatory requirement.

Vilma is the sort  of volunteer  whom I call an alternative
loony. Today a lot of us are like that, even me to some extent. We are
looking for the right path, and trying to compensate for the  shortages
we had before the change of regime.  There is a flood of alternative
literature, all kinds of New Age stuff. In that field, there is a type who
has an answer for everything, and  who possesses total faith  in
knowledge gained from books.
They know everything about this world, and about the next one too,
and about all our actions.
They approach simple everyday problems with a serious demeanor,
and the comment that, “Oh, obviously it’s your Karma….” . For some of
them , the  first question is: what is your astrological sign?, and then
they nod meaningfully:  Aha, they understand why the person is like
that. I watch Vilma with astonishment. The reason she comes week
after week, is in order to develop her spiritual side. She offers new-age
answers to the 90 year old woman
’s questions  and hasn’t a clue how
to give her attention, and simply listen to the patient.
In the common lounge she starts quarrelling with a patient:
She tackles the issue as if it were a question of life and death. The
elderly woman, talking about her daughter,  mentions that when her
daughter moved away, she said to her: think it over carefully, because
if you leave, you cannot come back here ever again, you have to bear
the consequences of your decision. Our Vilma needs no more to get her
going, she starts arguing, and she is very heroic, without yielding an
inch. It might be noted that the elderly patient is at a disadvantage,
being weak  and ill while she is in her full strength. How disgraceful
that a parent can  reject her daughter, not allow her back indeed, what
an attitude!. The elderly  woman tries to defend herself for a while, but
eventually gives it up. She is close to tears, but she just listens. Vilma
is  once again the reigning champion.

        A basic tenet of Carl Rogers, the most significant exponent of
humanistic psychology, is to allow ourselves  to understand another
person. When we listen to someone, our first reaction as we process
what we are hearing, is to evaluate and judge. We qualify his message
internally, how he feels about things, his way of relating to
things:  ‘That’s ridiculous!’  ‘Yes, truly, that’s exactly right.’ ‘Well
observed!.  ‘That’s ghastly.’  Rogers chose the word ”allow” because
he thought that in reality we are frightened of understanding, we fear
that someohow we will be changed by  another person’s opinions.
(12)  Along this line of thinking, we recognize the desirability of  “the
mature helper personality” with  the required strength and courage.
The stronger a person is internally, within themselves, the more they
are able to bend with gentlenes and mildness.

She is like an endless tape, repeating the same things over
and over again. She  scolds and accuses the doctors. Her mother
comes in and tells her to stop going on about it, to forget it, stop
thinking about it so much and stop torturing herself.  Then she starts
up again, with the same vehemence and damning accusations:
„I
simply cannot understand, accept and forget and forgive doctor Sz. for
the way he treated Eszter.”

All this terrible mental anguish is because they feel that
Eszter was neglected, both physically and emotionally, and was simply
writen off as an incurable.
Doctor Sz. did not look after her, he never visited her room, or try to do
anything at all for her. Visit after visit, I sit and listen to their
accusations against the hospital, against the doctors. At first I try
cautiously to defend the doctors who I know, and whom  I like. They
are recognized for the goodness of their hearts,  their
conscientiousness, but I soon realize that this is no use to Eszter and
her mother. It is not the truth they need. They just need someone to
tell it to over and over agian, someone who listens to them with
sympathy  and shares their horror at the terrible events. I do not turn
a hair hearing such obvious naive recounting, that it was the catheter
which drained away Eszter’s body fluids, and 
becasue of that she
became dehydrated, and  her weakened condition had  caused all the
problems. It is an unusual experience for me, that I can  understand
them so well, and still not agree with them  concerning the reasons for
their intense emotions, and at the same time, I do not feel that my
sympathy is false.

        It is not enough to know what  exemplary behaviour is and
to behave accordingly. Inner acceptance is also needed in order to
behave consistently. We cannot act or mime a seemingly correct
reaction. If our thoughts and behaviour are not in harmony, it is
reflected in our entire demeanour and it may block the flow of
confidence.

 

TWO CASE HISTORIES, AND WHAT WE CAN LEARN FROM THEM

In your togetherness, leave space for ech other.
Khalil Gibran

Eszter
There was a very good atmosphere at today’s meeting.
Although Eszter has lost even more weight, she weighs no more than
35 kg,  she still does not seem to be mortally ill. There is not a sign of
pain. She talks to me and her mother cheerfully. They are once again
scolding the hospital and her doctor alternately, saying that he has not
once checked in on her during her whole stay at the hospital. He
discharged her without saying a word about the future.
They tell me about Eszter’s  condition.  She has no more
problems with passing stools, but unforrunately they do not come out
where they should. Otherwise she is all right. She has a short walk in
the garden every day, although it is painful to get back to bed.
The mother starts telling me about the little house where she
grew up, and which her parents had built, and where Eszter was  born
too. She is talking  about how she renovated and decorated the house,
making it more and more comfortable all on her own as a divorced
woman, while raising her two children.

Eszter is remembering too, and  they grow visibly closer as they share
their memories.
They talk about the problems of every day life, and how
expensive everything is. They have enough  hardships anyway, but this
illness means an extra big burden for them.
Then the mother changes the subject, who knows how many
important things they have not talked about. She says that in the
garden there are tomatoes, green pepper, kholrabi and not much  else
and she proudly shows the pickled conserves for winter..
Mother and daughter chat away, stealing words out of each
other’s mouths, they are visibly enjoying the opportunity to unburden
their pent up feelings. As if with  the pleasure of speaking even ghastly
things become bearable.

        It is a lively, vivid meeting. Complaints about doctors, the
hospital, high cost of living.  Happily boasting about the single-handed
house improvements and about the home-made pickles. Reporting
about their daily life, because a visitor came who is interested in how
they are. There is someone who will listen to them.

Eszter is in a relatively  good mood, she and her mother are
enjoying talking today as well. They recall family stories. I get to learn a
lot  about them, and  I feel closer and closer to them. I am not just a
passive listener, and ask all sorts of quesitons about this and that. We
enter into a  special, intimate atmosphere, as we go back into the
family’s  past.

The members of a family cannot always remember the past
accurately. Sometimes an ominous silence settles down on them: the
silence of fear, hopelessness, the silence of secrets. The presence of
an outsider, of the volunteer helps the family members talk, loosen up,
get closer to each other. They have no need to talk about the minutae
of  their everyday life, since they are all familiar with it, but the interest
of a stranger is a good pretext to look back. Since the volunteer  does
not know anything about them, they have to inform them, get them
involved and  familiar with their world,  especially their past. A stranger
from the wider world, who is now no longer such a stranger, and whom
they have come to like. They gladly talk to them about their lives.

Listening to the relative

When Eszter’s mother sees me out, she pours her heart out. 
She is exhausted and she sometimes feels that her daughter orders
her around. She is an extremely difficult patient, and is often very upset
and makes her upset too. Then she gives her a piece of her mind,
which she later  regrets, but it’s dreadful, the burden on her.  They just
don’t know who will bring up the  granddaughter, if she also dies.
Otherwise, when she is well, Eszter is a wonderful
child. There are never any problems with her, but now that she is in
such pain, it is understandable, but still very difficult. The doctors have
just sent her home to die, but she still cannot accept it. There are lots
of instances of very ill people making a recovery, old people who would
rather die. Well then, she is just 30 years old!

        Family members who look after the sick and dying are under
enormous physical and emotional hardships. They are often on duty for
months, day and night, with the unbearable spiritual burden that no
matter how they hold on, they cannot help, their beloved will die. They
are tossed about between doubts and hopes. It is not rare, that the
patient is impatient, unfair, rude, when he is in pain. They have to bear
all this without a word, without showing signs of tiredness, and in the
face of approaching death, rather than expresing sadness, they must
try, if possible, to remain cheerful.
Their own lives are suspended, their earlier usual activities
narrowed down, they have almost no possibility for rest or  to re-
charge. They are often ashamed even to think about themselves, and
they cannot talk about it to anyone, unless perhaps to the volunteer…
The volunteer can encourage the family member to have
more rest and to to go out more. We can encourage them by saying
that they will be more fit to bear the difficult task of nursing the patient
devotedly, if they sometimes create the possibility of recreation for
themselves.

Volunteers are also people.

I am disappointed, my idea that music would help to relieve
some of Eszter’s tension and that  it could be used as a sort of
therapy, hasn’t worked.  She greets me with the informaiton that she
has seen Sybill, thank you , but she  immediately  starts packing it up
for me to take away. In vain I try to persuade her that this kind of
music can be heard over and over again. She says it is not interesting
the second time. She has not even seen the cassette called Opera hits,
and she does not want to, I can take it home. This is difficult  for me for
several reasons, first of all, because I cannot satisfy such an insatiable
need for cassettes- where could I get so many adventure film
cassettes from? I was hoping that she would hold on to them  and see
them several times. I am also disappointed because my good will got a
bit dented,  because of her different tastes. I recognize that  my
feelings  are not appropriate in a relationship between helper and
patient, and that does  help.  I can relate to Eszter with gentleness
again, as my bitterness begins to dissolve. I show the new video
cassettes with pleasure, they are musical pieces, but luckily all of them
are composed around a story. Eszter is overjoyed, and  I smile
serenely.

We are important to ourselves. Always, and in all circumstances. Even
when we are accompanying a terminally ill person on their difficult and
agonizing path, while we ourselves are bursting with  health. Our
feelings are hurt if a kindly-meant offering, such as a peach, is rejected.
We feel rejected if our advice is not  received with eternal gratitude,
and we are disappointed  if our ideas are not accepted and taken on
board. But people on the border of life and death,  of being and not
being, can teach us how to shed the deposited layers of  our fears,
envy, selfishness, and emotions .

Róza
Róza is 88 years old, intelligent, with a good sense of
humour, everybody cheers up when they hear  her name: Oh, aunt
Roza, she is so sweet they say.
Her lung has been operated on, but unfortunately they have not been
able to cure her. She is  paralyzed down one side, and it has left its
mark on her face as well. Her carefully combed short hair is chestnut
brown, as well as her eyes.
She was supposed to spend just one week in hospital, but
the following week I still find her there. I enter the ward a bit
hesitantly, one can never tell whether or not a visit is welcome. What
could  a stranger  possibly want? I am not a doctor, or a
physiotherapist, or a nurse. I am neither a relative nor an acquaintance.
The beginning of a relationship is always difficult. We have to
conquer our uncertainty, and that we are strangers. But I cautiously go
in nevertheless. Am I not disturbing you?  Are you not sleeping?
Oh no, just dozing, she says in a friendly way, ready to
recieve me. Reassured, I move a bit closer to her.
I spend nearly an hour by her bedside. It is a very simple
task to be a non-professional, voluntary helper. If you can listen to
someone  and remain  silent, if you can  learn how to calm down your
desire to communicate, to answer, to tell stories, to console, then you
are already suitable for the task.
I  just sit and listen. Róza is ready to die  any moment, she is
not afraid, she has a clear conscience. But she is unable to accept this
defenceless situation, this paralysis, this helplessness. That she needs
other people
’s help, when she used to be the support of the entire
family, she has raised two boys and a girl, all of them have gone on to
higher education, and have become very learned people, she has also
raised several grandchildren and they are also clever and talented.
She spent  a lot of time with especially one of them, she  practically
brought her up, since her  mother died very soon after the birth.  She
did everything, she solved all their problems. And she can’t complain,
because they love her and  they come to visit her every day, every day
somebody else, and on Sundays they all come, they work it out
someohow.They bring her delicious food,
because  the food at the hospital  is pretty awful.
Of course she could put up with the hospital food if
necessary –  food  is not all that  important, we are not alive simply in
order to eat, but we eat to live, and anyway a bed-ridden patient does
not need very much. She herself eats very little, but she misses tasy
things, and she really appreciates it if her daughter brings something
nice.  What a burden she is for them, she would like to go home, it is
different at home after all, but there is no one to look after her, her son
strained himself when he put her on the toilet. She has a crippled body,
it would be different if she could help, although she helps as much as
she can, but it is still difficult. Now her poor son is going for treatment
with his back and she is here in hospital. Luckily she can stay here as
long as she wants to, she has been promised that there is no problem
with that but it would be better at home, or finally just nowhere.
She is  sometimes tearful. No, she is not in pain, she says,
and usually she is all right. Her lungs were operated on in the spring
and she was fine until November but then it suddenly got worse and by
Christmas she was unable to stand. Oh I am just boring you, I have
not been able to tell you anything interesting, and she looks at me
anxiously, and apologetically.
But you have! It is not just me who has something to give on
my visits,  it is a give and take relationship, I get at least as much as I
give, if not more.
She looks up suddenly. Interest flashes in her eyes. Really?
she asks surprised and sceptical. Really? Was I able to give you
something too? But what?
Lots of things.  I can’t say exactly what just now, but I am
absolutely certain that it is a lot.
Oh is it really possible that I have given something? It would
be nice, you know, because I like giving.  All my life I have only given.

        Something unusual has happened to this patient, something
that she is going to think about, and which may give her pleasure
even  several days after the event. Her relationship to her visitors may
change. She may  come to realize  that  even in her helpless state, she
still has something to offer.

Abandoned by her family, Róza is still in the hospital. She is
becoming more and more quiet, and more and more sad. She tells me
about her sadness. She mourns the fact that this is how she is ending
her days – as a helpless old woman,  unable to look after herself, who
needs the help of her whole family as well as nurses. Whenever I go
and ask how she is, she gives me the same answer: I am not in any
physical pain, but the mental pains are much worse. I keep mulling over
the idea,  how is it  possible that someone  who is so intelligent and is
not afraid of death, someone who has lived a complete life and has
nothing to regret and wants for nothing,
who has been given a long life, someone who, although bed-ridden
and crippled,  and is getting closer and closer to death day by day, but
who is nevertheless so fortunate that she does not suffer any pains,
why is she so dissatisfied with the ending? Logically, there seems to be
no apparent  reason for it.   Well of course there are people who simply
fall asleep peacefully and die, while they are doing a cross-word
puzzle, with a pair of spectacles  on their nose, like my grandfather.
There are such cases as well, and we all dream about something like
that, but if we were able to bargain for an ending, Roza’s situation
would not seem such an unattractive option either. Why is she unable
to accept it? Why  this deep sadness? Perhap  because she  too  is
aware of  all this with her reason, but then our emotions do not always
coincide with our reasoning. It is still painful to leave, even if we have
had a long life. It is hard to leave those we love, even if we are not
afraid. We cannot take them with us. I have been thinking about aunt
Róza, but I do not really understand her.
She is sadder and sadder at every visit.
Later on her speech becomes garbled and confused. I think
the end is coming.
She is deteriorating rapidly.  She is frightened, and wants
someone with her, so she is very glad when she sees me. I stay with
her for 2 hours, and she talks only aobut how much she wants to go
home. I should start packing  immediately, trains are about to leave,
but if there are no trains, there will certainly be a bus to take her home.
These are really muddled sentences, since she has been
living in Pest, in Zugló, for 50 years. But her confused mind makes it
impossible for her to conceal her pain any longer. The care she has
taken to cast her family in a favourable light, is discarded. She reveals
the real reason for her sadness.
She says that initially she came to the hospital  for just one
week for a bit of time off- a good rest. She thought that  they were
going to sort her out a bit, and she  never thought that it would take
so long. She is longing to go home, she cannot bear to stay here any
longer. She also refers to the fact that when she was an active
grandmother, she was still  useful to her family (and she makes a long
list of all the ways in which she helped her sons, daughter,
grandchildren) but now they do not need her any more. At first she
thought that she was  in  the right place, her children are working
people, and they are not able to look after her, and it’s great that they
visit her every day.  But now she can no longer conceal the reason for
her sadness any more.

        It is not just that she is longing to be at home, in her  home
environment,  amongst the accustomed  and beloved objects, among
memories. It is that her whole life and past depend on it. Was she a
real living person,  or just a myth  which she has created  and coloured
in:  the mother who raised four children in peace and love, properly and
cleverly; who was a full-time wife and mother supporting her lawyer
husband;
who has successful educated adult children with diplomas, and  who
are loving and kind children at the same time. After the death of her
husband, on her own, she still lived for her family and grandchildren;
she was strong, determined, brave, she always helped where there
was a problem and devoted every minute of her time to the family and
as a return, she was the beloved, esteemed Granny. But this does not
fit the  image of hte abandoned hospital in-patient, and  that they
cannot take her home, and undertake  to look after her  there,  for the
brief remainder of her life. If  that is really the case, if it is true, her
whole life is questionable. The myth is unveiled,  and that is how she
has to die, with this surprise, at a loss, with  deep disappointment in
her soul.

Thank God, she was taken  home,  and round-the-clock
nursing, by her family, was organised. The relatives take it in  turns,
her sons, her daughter and her grandchildren.
On Friday I visit her flat in Zugló, full of  curiosity. It is  is quite
an unusual sight to see Róza in her  own bed instead of the hospital
ward. It is both sad making, but reassuring. Her physical state is much
worse, she is even smaller now, and her tiny body disappears even
more under the blanket. Her face is also thinner, and this is a positive
change, according to his son it is her real face. In hospital one of the
drugs caused her face to puff up.While I observe with saddened heart
that she has taken further steps towards another dimension, I also
notice that she is more peaceful, quiet. Her son sometimes manages to
get a few words from her,  and I am surprised to see that there is not
a single trace of her earlier confusion.

INTELLECTUAL HELP

Our fear of death disappears in direct proportion to the depth of our
love.
Gottfried Edel

TOTAL BEWILDERMENT

Oh it is so good that you have come, do  sit down beside me
my dear! You are also one of those angels, I can tell by your badge.
But you do not want to convert me do you? You are not here to preach
all sort sof religious stuff are you? Last time someone just went o and
on about their own nonsense, and  I really don’t want another episode
of that.  It is not that I am an atheist, but you know, it really is a
private matter for me.

A priest came up to my bed. I was interested to see what he
wanted. He started to jabber, I can hardly remember what he said, he
never  even looked  at me, and it was certainly  just a collection of
cliches. Things like :
„God’s ways are inscrutable”. In those days I was
confused about questions of faith, I had an  aversion to seeing a priest
who sat down on my bed without being asked. But I was longing for
human words, I listened to his soulless jabbering with hope, maybe
there will be something personal. I wanted to tell him to look at me, to
wave to him, hey, I am here too. I wanted to complain about all the
pains I have, how frightened I am of these tubes at my neck and on my
abdomen, and to ask what willhappen when they take them out? and I
wanted to signal to him  that I could hardly breathe, but there was
nobody to talk to, because this robot in priestly disguise sprinkled
some holy  water on me and  stepped over to the next bed , where he
jabbered exactly the same stuf,  then sprayed some more  and ran
over to the next patient. He ran around in the ward like a whirlwind,
then found the doorway and fled.

It is a problem for a lot of volunteers,  that they feel they
could give support and reassurance to the patient only through talking
tothem about  their own faith and convictions , and they try to
persuade the dying person to pray, to read the bible. Some of them do
actually do this,  and they are unaware in their well-intended zeal that
they are creating an aversion in  the patient. But  there are also those
volunteers who rigourously avoid trespassing on such sensitive
territory  precisely  in order to avoid these aversions. What is the right
attitude to adopt?
If we regarded the whole question of faith as one of a
private, intimate nature, then it would be much easier to find the
appropriate attitude. It is a personal question, for example, how the
patient relates to his own incurability, whether or not he is afraid of
death, what are  the components of his fear of death, what kind of
funeral would  he like. Conflicts between a married couple are also
private matters, and so is sexuality. There are several other examples.
We never ask blunt and direct questions concerning an intimate
subject. We do not want to offer our personal, albeit brilliant,
advice…… „I know a good undertaker, can I give you his address?” „I
overheard your wife having a go at you on the phone.  Are things
really that bad?  Can I help in any way? We do not pry into our best
friend’s sex life, by bursting into their room.
It is possible to talk about any and allof these things. There
are no taboo topics.  It is just a matter of finding the right mode, but
most importantly, only if the other person would really like to. We
should  not step over to the bed of the patient with a Bible, a small
picture of a saint

and  ready-made religious cliches. If we are able to listen to the
patient, we can make it possible for them to share even their deepest
feelings. We should always strive to be a connecting link for the
patient.  Let’s just get connected to the feelings,  the thoughts of the
patient and to the things they dare and want to tell us. If they ask us
for our views and opinions, then we can say what  we believe, that we
have learned this and that, but not as if ours is the one and only
truism. If we believe in the power of prayer, but there is no possibility
of  praying  together, we should not think that we have to abandon the
idea entirely. While we are silently together with the patient, we can
silently pray in ourselves, we can talk to God and ask for his help.

A week ago this elderly man was very indignant, and had no
idea bout the serious condition that he was in. He thought he would be
able to go home in one or two  days.
Now he is lying here absolutely unable to do anything. the
clumsy movements of his hands, his contracting facial muscles are a
sign that he has not much time left. He is trying to speak, but he
cannot form the words, he tries in vain.
I take his geticulating hands, but he pulls them away.
I sit beside his bed for a long time, I am talking mutely to the
departing soul, I try to give him courage,  and reassure  him about my
love. I recite a  Lord
’s Paryer.
The doctor’s round interrupts my sitting. After the visit I sit

down with him again and when his small, fragile wife  arrives, I leave
them alone. The old woman looks after me with tears and gratitude in
her eyes.

Marie de Hennezel refers to this as the spiritual approach to
dying.  Those who care for  the dying  see them not just as a body
which needs nursing, but  as a suffering being, who can still change
and develop spiritually through this suffering and who can  find
fulfillment even in the last hours of agony.
„In this sense, the spiritual approach to dying is nothing
more than just simply being totally there for  the other, listening to
them and  accepting  with confidence everything which emerges  from
them…”(13)

Gábor has had a car accident. He was taken to hospital with
serious lesions, but he was still conscious. The x-ray showed that his
spine had been broken. He felt terribly and was absolutely certain  that
he would die any minute. It was curious, he accepted the fact quite
easily, he accepted the inevitable. But it was inconceivable to him that
he should die alone.

Luckily the x-ray assistant was still in the room, Gábor thanked
providence that he had somebody to turn to for help. He asked the
assistant to go to him and be with him. What happened after that was
beyond belief to  Gábor: the woman not only refuse to do as he had
asked, but she had altogether left the room. Gábor trembled in his
loneliness, devastated.

        This is not how we would like to experience death. We have
to go over to the other side on our own, and no-one is able to assume
our fear and infinite loneliness. Whether it is complete  abandonment,
or half-hearted support,  the lack of understanding increases our
spiritual fears, while being together full of love can alleviate this
loneliness to a certain extent. The coldness of the nurse probably did
not come from heartlessness, but from fear and  helplessness. Szögjal
Rinpoche, the Tibetan spiritual  master writes about this helplessness,
when he advocates a worthy way of caring for the dying in the western
world. A doctor friend of his who had just graduated from  a famous
medical university, discovered in despair that he had not received any
guidance with regard to the spiritual support to be given to dying
people. Immediately on his first day on duty, four or five people died in
his department. In a ward an old man was lying, staring at the wall- He
was alone, nobody visited him and he would have liked to talk to
someone. He turned to the doctor and in a  trembling voice, with tears
in his eyes asked him: „Do you think that God will ever forgive my
sins? ”The doctor was speechless with astonishment, he had no idea
what to answer.
Later on he went to see Szögjal Rimpoche.

        ’In a troubled, agonised voice, he asked me what I would
have done. I said, I would have sat next to the patient’s bed, I would

have taken his hand and let him talk. I am continually surpried by the
fact that if you let people talk and if you are with them totally with your
complete attention and sympathy, they reveal  undreamed of  spiritual
depths even if they say they do not believe in such things. Everybody
has their own life’s wisdom to convey,  and when you let someone talk
to you, it is often revealed. I have often been moved by how much we
can help people help themselves, even just by revealing their own
truth, about which they never would have thought how rich, lovely and
deep it was. The sources of recovery and consciousness are deeply
hidden in all of us.
Your task is never to force your faith on other people, but to
enable them to find their own faith in themselves.”
(14)

OFFERING  HOPE AND FINDING FORGIVENESS

When a patient opens up, he often talks about the mistakes
made in his life, about lingering guilty feelings over an incident,  or
about something which he has neglected to do. It is not our task to
pass judgement on his actions,  and to decide whether he can really be
blamed for what he feels guilty about. We should not reply with  „well,
maybe it was not the most brilliant thing to do, but now you should just
forget all about it”. Neither should we try to comfort him by saying the
opposite: “Is this all that’s troubling you? But it’s nothing, we are all
guilty of such trifles, after all we are only human”.  Our task is to listen
to and  take notice of the things he reveals, and help him to be as
satisfied with his life as he can possibly be, and to focus on his virtues
and and not his faults.  In this manner, we can help him to come to the
end  of his life more peacefully. Another condition  for achieving spiritual
peace is that he does not harbour anger in his heart. Approaching
cautiously, let’s find a way, if possible, to call his attention to the fact
that forgiving is basically important also for his own sake. We can
encourage him to become reconciled with the person he is angry with,
either personally, or by writing a letter, or even just in his thoughts. No
matter how much we think however, that „we must do everything for
his spiritual salvation” in reality, this question is not our responsibility.
Anyway, there is only so much  one can do, and this fact does not
change even for those who are on the threshold of death. We get
nowhere by forcing the issue.

TASKS BESIDE AN UNCONSCIOUS PATIENT

Pisti, the new volunteer, and I are coming and going, busy
with our tasks. I see an old woman on a bed and I recognize the signs
of death-agony. According to the nurse she has been dying for two
days. We do not have  much to do  with her, we deal mostl with those
who are still communicative and require our help. After distributing
lunch I leave for home. At the gate I remember the old woman. Oh God,
what have I learned through  all these  years? How could I have just
ignored  her? Who else needs help and loving support, if not her? I
shoud sit down with her a bit, since she is totally alone! I turn back,
take off my coat and hurry back to the dying old woman. I sit down
next to her. I am in luck, because most of the beds in the large ward
are empty, the patients are out, so I have the courage to speak to the
unconscious patient. It is  difficult enough to speak to someone who is
uncoscious, but if ihave to do it  nin fornt of others, than I amquite
incapable . But now I say: I am here
I have come to be with you, I will  stay for a while and hold your hand,
be calm.  I  take her hands and immediatley bend all my thoughts and
attention towards her.
I do not want to think about anything other than just this
lonely soul, who is standing hesitantly before a big decision. Praying is
a good means of channelling our thoughts. I know only one prayer, the
Lord
’s prayer and I start murmuring it. I also talk to this mysterious
soul preparing to leave, I encourage her and as I know nothing
reassuring at all about “the other side”, with any certainty, I offer her
my love. I suddenly experience a light inside, which is like the flaring
flame of a match. Pleasant warmth permeates me but only for a
moment, then I do not know myself, whether it really happened.  The
old woman  gives a last sigh and dies. I am awestruck. She asked for
just 5 minutes of my life, 5 minutes were enough to make up her mind.
She has been lying like that because nobody had five minutes to
spare.  I bless the moment when I turned back at the hospital gate.
Tears come into my eyes, but I do not grieve for the old woman. I am
thinking  of  all the lonely dying people, all over the world, who people
pass by and overlook, just as I also did the whole of the  morning.

        This old woman managed to gather up her courage to depart
this wolrd,  through the presence of the volunteer. As if dying would be
a question which one could decide. It is moving to think that most
people when they leave the world, do not seem to get even this much
encouragement. We die alone and lonely nowadays, in a hospital, and
often abandoned by everybody. This soul was lucky because the
volunteer suddenly became aware of something and went back to her.
And the helper was no less lucky, because she had an uplifting
experience. It was as if she had been the one chosen to be present to
support the departure of a dying soul.

I sit down with a man with a very thin face, and he looks at
me with big beseeching eyes. He cannot talk or move. I can definitely
feel that he would like something. For a few moments I am helpless
and don’t know what to do, but then I see his dry lips and tongue with
the help of which he is trying to wet them. There is a cup of tea with a
straw on his bedside table. I try to give him a drink, although I do not
know whether he is able tomake the slightest effort. He slowly starts
sipping the tea.  After a few sips he lets the straw fall from his mouth.
He slowly makes  a sign  with his eyes, thanks. Then he  slowly raises
his hand as well, dismissing me. He closes his eyes and falls asleep.

        If the patient is not able to express their what they want or
need, we have to apply great attention and sensitivity, and sometimes
we have to try different things, in order to decide what they would like
from us. We are obliged to ease the unpleasant symptoms of a patient
who is unable to communicate or who is unconscious, we have to
quench their thirst or wet their lips, perhaps change their position or do
the tasks with permission form the nurse, which do not require
professional knowledge.

WHAT SHALL WE DO BESIDE A DYING PERSON?

If  it is possible, then we should strive to be present at the
time of death. It can be a great support for the patient and the familz,
and it could also be a momentous opportunity for the volunteer. If the
family memebrs are also present, we should modestly and discreetly
take a retiring position. If it is the case in our earlier contacts with a
patient, that we should not be intrusive and pushy, it is a hundred
times more so now. The departing person needs tranquility. We should
not feed them, or change their position or start re-arranging their bed
in a forceful manner, unless they have specifically asked us to. We must
strive up to the very last moment to reduce the agonising and painful
physical symptoms, so if we become aware of the patient’s
discomfiture, we can help the family to reconize it also, and to treat it.
Reducing pains, moistening parched lips with a damp cloth, drying the
sweat from a brow,  are  the sorts of activities which are appropriate at
this time. But  we should not  press forward to accomplish these tasks,
rather they should be left to a member of  the family to perform.
Let’s aim to radiate peace and calm. Let’s be alert. Wailing,
loudly lamenting  just makes the situation of the dying person even
more difficult, it holds them back. So let’s instead  try to soothe and
calm the despairing realtives.
When the moment of death arrives, relatives often feel
horror, they are at a loss what to do, how they should act  at such
occasions. The presence of a volunteer can be especially useful at such
times. Let’s be calm and quiet, our tranquillity may give a feeling of
safety for the family members.
In the past, when  technical progress in  hospitals did not yet
alienate the period of dying, specific  rites helped the family through
these difficult hours. They helped the departed soul find the right way
through praying, and keening. This belief can be found in almost every
religion – the idea that the soul  hesitates, and is perhaps horrified  and
it  does not even realize what has happened, since the soul does not
percieve death. It sees the weeping relatives, but  it cannot make
contact with them. It sees, feels shock or the lack of sympathy. The
researches based on reports of people who have had near death
experiences sseem to justify this.

„It was peculiar, but I recognized not only the words whcih
were being verbally expressed, but also the thoughts of the people
present at the scene of the accident and I could understand it in every
language.

For example a woman from Tessin, who was there with a little girl of
about 7 years old, was totally horrified when she saw my corpse. The
little girl wanted to run away immediately, but the woman held her
tight with her right hand and said The Lord’s Prayer  and an Ave Maria

to herself. She implored  God to forgive the sins of the young man who
had an accident here. I was deeply impressed by the generous prayers
of this woman and I was  grateful for her help. It made me very happy,
and it gave me strength. At the same time I also felt radiating love
coming form her to me.
She was the only person there who genuinely extended
spiritual help towards a dying perosn, and in that way was a gret help.
(15)

Volunteers can  also be a great help to the family with all the
neccessary things which  need to be done with the deceased. Tying up
the chin, closing the eyes with wet cotton wool, washing, dressing are
all folow-on tasks. The body must be straightened out, and arms have
to be placed next to the body or  folded together across the chest. The
death has to be announced to the GP.  It is not neccessary to rush
these things, and most importantly, there is no need to quickly remove
the body. Ideally, itwould be good to bring back It would be good to re-
instate something from the rites of the past and to give the body and
the soul that which is their due. We can light a candle, place a flower,
switch on the favourite music of the departed. These manifestations of
respect and love –  staying up close to the corpse, singing religious
songs, praying – are helpful not only to the deceased,  but to those
remaining here they can be beneficial in raising consiousness, and in
preparing for the period of mouring, and to work through the
debilitating loss.

WHAT  WE ARE LIKE, WHAT  WE COULD BE LIKE?

Only by loving, can we learn to love..
(Doris Murdock)

We are genuine people only to the degree to which we are able to
love.
Borisz L. Paszternak

HOW DO THE PATIENTS SEE US?

The confessions of a young man
-What are helpers like in general?
– There are several types: one of them is  full of action and  prescribes
millions of tasks for me. For example very hard physical exercises which
would make even a gladiator feel ashamed,
let alone a sick and weak person. This type does not believe in death,
it is the fate of the weak. They set  lots  of tasks and if the patient
doesn!t do them, well, he has only himself to blame, the helper has
done everything, and it was not his fault if the patient was not cured.
Another type is the  bigoted religious maniac, who tells me how good it
is  that I can soon be in the next world. At first he is nice, but when it
turns out that I am not a customer for his beliefs  he gets angry. The
esoteric loony is similar, she offers  consolation  by saying that I should
not be sad, my following life will certainly be very good,  because I took
on board such difficult Karma in this one,  I have earned credits in  my
next life!  Then there is the healer with a marketing approach,
I
„simply” have to follow his instructions, for which he will strictly call me
to account. I should have a note book, make a chart of my exact
schedule, write down my short, medium and long-term objectives.
Obviously  this sort would go fuirther and further if I let it. Then there
are those sorts of helpers who want tohelp, but simply collapse by my
bedside and so full of sorrrow  and sympathy, that I end up feeling
sorry for them, and in  the end  we just sit here next to one another
collapsed, sunk into ourselves, like two unlucky fellows.
        -What is your present helper like?
Sincere, natural. She does not want to save, or convert, or
cure me. She is very accepting, does not judge and criticize me. She
does not wallow in pity. And she is a very good listener.

– What is so good about this relationship?
Well, that there is someone I can  belong to. I have no family
who would look after me, nobody. Now I have someone who thinks of
me, who comes and we can  talk. I love it  that by talking with her, I
have ever newer insights, which are revealed simply because I am able
to express my feelings to her. This is a great thing. The other thing
which is good
– and  I do not abuse it – is the fact that if my condition,
both physical and spiritual,  deteriorates I have someone to call. It is
very good.
        And how long do you think this relationship will last?
For a long time, I hope, from several points of view. If it lasts
until my life does, then of course it would be good if the realationship is
long. But also because it means a lot to me. How long will it last? Well,
until we get on each other
’s nerves… or until death.

WHEN IT  DOES NOT WORK ANY MORE: THE PHENOMENON OF BURN OUT

If we would like to belong to the latter type of  volunteer, we
need to pay attention to ourselves. Not only do we have to examine
each meeting,

what we did well, and what kind of mistakes we have made, but  we
have to be aware of our feelings as well. We can ask  ourselves: Why
am I doing this work? What makes me happy? Am I still getting from
this difficult service what I got at the beginning , or what I now expect?
What secret motives have induced me to play this role as helper, and
what is keeping me here?
Would  I rather opt out of this role, but  lack the courage to
suffer the consequences, or I simply cannot face changing the image
which I have created about myself. Have I got any subconsious
physical, psychological symptoms?
The psychological phenomenon known as  „burn out” first
began to be  noticed among the volunteer sector in the early 70s. This
syndrome is the state of physical, emotional and mental exhaustion,
which is a consequence of  too great emotional burdens and stress,
and lasting for a longer period of time.
Its physical symptoms are fatigue, weakness,  apathy,
headache, sleeping and eating disturbances. Its emotional symptoms
are tension, depression, emotional exhaustion, feeling empty,
hopelessness,  feelings of incompetence, the loss of objectives and
ideals. The symptoms of mental exhaustion are a negative attitude
towards ones own personality, to work, or others, and a dehumanizing
attitude to the  person receiving our care.
The phenomenon of burn out is closelz connected to the
motivations of helpers. A mature helper performs his tasks from a
standpoint of free will, conviction, and the desire to help without any
external reward, since the inner pelaseure derived form the work, is in
itself sufficient recompense. „The person with a so called „ helper’s
syndrome” is characterized by an uncertain psychological balance. In
many cases they want to help others so that they do not have to pay
attention to their own feelings and needs, and the unresolved
questions of their own lives. Neglecting their own develpoment, they
expect to gain strength from the role of assisting.
Burn out can be prevented, and the process can be stopped.
When the volunteer experiences signs of burn out in themselves, it is
worth having a shorter or longer break in their work. It may be the
case that the helper does not feel the typical symptoms sufficiently or if
they do, then they might attribute it to some other cause. They strive
to find their earlier balance, but as tension increases, feelings of guil
also come into play. It is the shared responsibility of the nursing team
who care for the  seriously ill,  to pay attention to one another as well.
The recognition of  a colleague’s difficulties, who may be struggling with
the symptoms of burn out, and the provision of  adequate emotional
support may depend on the sensitivity of a support group. The
possibility of supervision, the participation in a self-development group,
taking over the person’s role, temporary release from work may offer a
solution to the one in crisis.

ENRICHMENT, INTERIOR DEVELOPMENT

The ministration which  we perform for the terminally ill, as
well as helping us to come to terms with our own  mortality, provides
us also with an opporutnity for the sort of  interior development which
cannot be achieved through any other means. According to some
spiritual masters, the quickest way for people todevelop spiritually, is
to care for those who are dying. The initial impulse for hospice
volunteers is simply to be of service. Later on, their motives are vastly
enriched when they realize that nowhere else is it possible to be in
contact with people who are so genuine,  who have abandoned all
artifice, daring to reveal their  true selves, than when they are together
with people close to death. Every helper states, that they get at least
as much from this service, which is deemed as extremely difficult by
most people,  as they give. That is, when  one manages to establish
some real connection with a sick person, even if it is merely a simple
gesture, such as changing  his uncomfortable position, giving  him
something to drink, or  an unhurried conversation, listening, a little
humour, a smile. When we can feel that something has changed and
tha we have made even a miniscule diference  when we stepped  up to
the suffering person, some change, during which we got closer to each
other. And we feel the sense of unity in this change. Every teaching
speaks about this unity, as the basic question of life. This is the goal.
When someone does not experience himself as a separate being, but
that he is ONE with everybody. When there is no prejudice, suspicion,
envy, anger. When the feeling of  being a stranger, which  creates a
distance, ceases. And no matter how surprising it is, when fear also
disappears. If we see a suffering person, if we meet an incurable
illness, fear arises:  maybe one day we will be in the same position too!
We cannot avoid our fate either, but when we step over the border of
alienness, fear ceases as well. In unity there is no fear. In unity there
are no bad moods, tension, nervousness, depression. In separation we
are cut off from pleasure, from all things natural, from  God and from
ourselves as well. The provision of hospice service is a way in  which
we can find the path back to the basic elements, from which we are
separated. We can find the way back to ourselves, to the better part of
ourselves. The service of helpers is a means by which we can
understand life more deeply and is also ameans for understanding
ourselves more deeply too.
In helping the terminally ill, it is desirable that warm-hearted,
sincere and genuine  people work. The aim is simply to be of service
but it is at the same time a means of  bettering ourselves. Every single
gesture of help is a small step on this road.

How dare I try  to nurse dying people, I am not Mother Teresa! I have
a loong way to go before I can even begin to think about it. I am often
a real hot-head, I hate the postman who rings the bell and wakes up
my child, I hate the drivers who spatter me with mud, the teacher who
gives a warning to my son, the cashier who cheats me, the people in
the queue in front of me, and in many cases even the sun that rises.
But I mostly hate myself for all this. Grandma? Well, poor thing, I have
been nursing her for years. No, it is not a burden, I sometimes get
tired, it is true, but I love her and basically all this nursing, I am glad
that I can help.

If we waited until we were perfect, to be worthy of such
service, the patients would be left entirely alone. But we can trust that
in the course of  years we can begin to approximate and get closer to,
an image corresponding to our own strict principles.
„We work on ourselves, so that we can help others,  and
helping others is a way to work on ourselves.” (16)

        In general, like most journeys, the path of a helper is not
smooth either. We may already think that we are possessed of enough
sympathy, and that more and more we are able to feel a sense of unity
with those who we help, and that we are  further along on the road of
inner enrichment. And then an ocasion arises, when nothing is as
expecte, patients seem alien and we do not understand why we are
doing the whole thing.  The cause could be that we are just having a
difficult day,  or it can be a patient who made us angry and we lost our
temper, swept away by our emotions. Any moment, we can be struck
by a feeling that we have learned nothing. And then  when we go on, it
turns out that we do not, after all,  have to start  all over again, with
bold determination.

„When we can recognize that helping is not a one-way road, it turns
out that those whom we help are constatnly giving signals  of how we
can be released from the prison of ourselves. The help comes not just
when they are telling us what we should or shouldn’t do for them,  in
practical sense,  to relieve them,  but  when they question the image
created about ourselves. It is as if they see through us, and beckon to
us.  What a blessing if we could  integrate all this! We may feel a bit
lacking, but it should be gratefully acknowledged.
The struggle of those whom we help reveals to  us the most
clearly possible life.  Suffering removes the veneer  and leaves only
truth and the essence. The deepest human values emerge: openness,
desire for goodness, patience, courage, forbearance, faith, humour…

living truth…

the living spirit. When these values touch and move you, we have no
other choice than to take notice and recognize again our own human
essence. Others notice when this happens. We can feel that they feel.
These moments remind us  most of what real service is.
”(17)

There is so much suffering today. Everybody is struggling, a
sick woman is choking, another has a pain in her leg a third on, all skin
and bones,  is fightingfor her life, she is very sick and sends me away
immediately. A young woman with  bone cancer, herimplanted tubes
relentlessly inflames, in terrible pains, high fever. Tears are streaming
from her eyes, she is shivering. She is taken to the intensive ward, she
is terrified of pain, it must be terrible, she is tapping at  her tube.
The old woman lying next to her is complaining as well, she
also has cancer, she does not know what will happen, how long it will
last.
She says she believes in God, but she cannot understand
why one has to die like that, why not normally, why one has to suffer
so much, so many people have cancer, it is terrible.
So much suffering! I go into the common room and start to
cry.
Death does not matter, but the route there.
As I am leaving the hospital, I look down at my feet- as I put
one foot down after the other, I am seized with happiness. I feel that it
is an infinitely huge gift that I can walk. I remember Marie de Hennezel,
she experienced something similar after meeting a dying person. But
anyway, these days I am more able to experience sympathy, being in
the here and now, more complete devotion,  more easily than ever
before.
I am experiencing that what I have been practicing has
appeared in my work today and that consciousness, being in the here
and now, and  a more complete life can really be learned. I experience
completeness more and more often, several times a day. While running
in the woods, stopping to watch, in wonder,  the diamond  sparkles of
snow, looking at the rain-soaked roof  through the window of the
study, looking into the eyes of my son. And the runner bean stew on
my spoon! Nature, the presence of God, cut up green beans, full of
nutritious substances, thickening,  wholemeal flour, health itself.
Feelings are deeper, seeing so much pain and suffering, I
end up by weeping. But unusually, there is also unexpected joy: how
many times are we happy about things which we take for granted?

        „The desire for reducing suffering is a basic element of our
human nature. We will unavoidably feel the acute pain and  despair
when despite all our efforts pains are not  reduced, and can even
become more serious and
spread threateningly. The suffering of the world torments and breaks
our heart, because we cannot keep it at bay any more. We have seen
too much. We devote ourelves more or less to service and we are
willing to pay the price of sympathy.
But the pleasure of heartfelt care goes with all this, the
privilege to be able to participate in a  process, in which one gets up
every day and does the best they can. Grace which is beyond
comparison, is another component of this , and that we are the means
of love, no matter in what form, or for what purpose.”(18)

ONE FOR THE ROAD

Physically, emotionally and  spiritually we derive the  deepest
and  most lasting pleasure from devoting our time, our abilities,  talents
and energy  to those activities  from which everybody benefits.
Eknath Easwaran

At the end of this study, I would like to tell you something on
a personal note, dear volunteer, who has got to this chapter in my
booklet.
I would like to give you something before you start on the
road of helpers, which as we know is not at all smooth and straight, or
to you, who has been travelling on it for a long time already, but you
would like some support.
What can I give you, which could offer  help and reassurance
through some of the  more traumatic periods?
First of all,  perhaps I should express my gratitude to you, in
the name of everybody who has receied  the blessings of your
assiduous work
. It is well known that health care cannot do without
the work of volunteers anywhere in the world. So you are needed, you
are important to us. Thank you, that the intention to help which is deep
inside  all of us is active sympathy in you.
Thank you, that you are  able to gather strength to set off every week
and follow what your heart says. Thank you for the hours of rest you
have sacrificed, Thank you for your family’s understanding, thank you
for your useful service.
We know that you are not expecting gratitude. It is enough
for you if patients return your care by joy, but you do not expect it. It is
good for you if the organization to whom you belong to, recognizes
your work, if the group respects you as an equal member, but you
would do your job without this as well. We still want express it, we are
grateful to you, because you exist.
We offer our thanks and gratitude with our love, as
provisions for the journey, hoping that you can  draw on  it any time,
any quantity, as often you feel you need to. Accept these gifts, and
leave bravely!

But no matter how much we give, we are sure that the most significant
and valuable gifts will be yours as a consequence of your time spent
with  the special purity, and deep humanity of people walking towards
death. We trust that as well as the  pain, the suffering,  and the
struggle which sometimes seems to be hopeless, you will also find the
joy whcih cannot be compared to anything, the sacred, which can be
felt and seen only  in the border-situations of life.
We state with certainty that the deep humanity shown by
seriously ill people does not pass you  by without any signs, but that it
will become a means of creating your own humanity.
We count on you, we are waiting for you with love!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 
BIBLIOGRAPHY

  1. Gyukits György–Keresztes Cecília: Szociális munka egy palliatív terápiában részesülő daganatos beteggel. Kharón, 2000/3. sz.

 

  1. Dass, Ram – Gorman, Paul: Hogyan segítsek? (How can I help?) Ursus Kft., 1999 (77. o.)

 

  1. Szögjal, Rinpocse. Tibeti könyv életről és halálról [A Tibetan book on life and death],

Magyar Könyvklub, Budapest, 1995. (223. o.)

 

  1. Dass, Ram – Gorman, Paul: Hogyan segítsek? (How can I help?) Ursus Kft., 1999

(127. o.)

 

  1. Pilling, János (ed.). A haldoklás és a gyász pszichológiája [The psychology of dying and

mourning], SOTE, Budapest, 1999. (III./4.)

 

  1. A terminális állapotú daganatos betegek palliatív ellátása, Szakmai irányelvek, 2. bővített kiadás. Magyar Hospice-Palliatív Egyesület, 2002. Szerkesztette: dr. Hegedűs Katalin és Szy Ildikó. (85. o.)

 

  1. Szögjal, Rinpocse. Tibeti könyv életről és halálról [A Tibetan book on life and death],

Magyar Könyvklub, Budapest, 1995. (47. o.)

 

  1. Hesse, Hermann: Sziddhárta, Dass, Ram – Gorman, Paul: Hogyan segítsek? (How can I

      help?) Ursus Kft., 1999 (126. o.)

 

  1. Hennezel, Marie de. A meghitt halál [Intimate death], Európa, Budapest, 1997. (19. o.)

 

  1. Marie de Hennezel: A meghitt távolság – Kharón Magyar Thanatológiai Alapítvány

1998/tavasz (9. o.)

 

  1. Jelenits-Tomcsányi: Lelki jelenségek és zavarok – Római Katolikus Szeretetszolgálat, 1988 (214. o.)

Bagdy Emőke: Határmezsgyén. A halál és a gyász

 

  1. Carl Rogers: Ilyen vagyok

Kultúrközi kommunikáció – Magyar Pszichológiai Társaság Munkaértekezlet,

Szeged,1984 (11. o. )

 

  1. Hennezel, Marie de and Leloup, Jean-Yves: A halál művészete [The art of dying],

Európa, Budapest, 1999. (15. o.)

 

  1. Szögjal, Rinpocse. Tibeti könyv életről és halálról [A Tibetan book on life and death],

Magyar Könyvklub, Budapest, 1995. (238. o.)

 

  1. Jankovits István: Túléltem a halálomat – Édesvíz Kiadó, 1992 (59. o.)

 

  1. Dass, Ram – Gorman, Paul: Hogyan segítsek? (How can I help?) Ursus Kft., 1999 (247.o.)

 

  1. Dass, Ram – Gorman, Paul: Hogyan segítsek? (How can I help?) Ursus Kft., 1999 (158.)

 

  1. Dass, Ram – Gorman, Paul: Hogyan segítsek? (How can I help?) Ursus Kft., 1999 (232.o.)

 

ABOUT THE HUNGARIAN HOSPICE FOUNDATION

Our Foundation has been created for the relief of  physical and spiritual
sufferings of  terminally ill cancer patients who can only be given
treatment for the symptoms. Our primary concern is for the
preservation of human dignity and the humane treatment of   incurably
ill patients. Our objective: by reducing the pains and symptoms of
patients, to achieve the best possible quality of life, to engage in
physical and intellectual activity, to help relatives bear the burdens of
illness and to support them throughout the period of mourning their
loss. In our country,  the conception of hospice care  appeared in 1991
when the Hungarian Hospice Foundation was created by Alaine Polcz.
Our foundation has been nursing patients in Budapest for 11 years,
following the guidelines of  the hospice approach. The past few years
have seen some fundamental changes in the way our organisation
operates. Our foundation won the „Civil Organization of the Year”
award in 2001, and in  the spring of 2002 we opened the first wing of
the Hospice House in Budapest which was a result of a wide-range
social joining of forces.

THE GENERAL PRINCIPLES OF HOSPICE CARE:
holistic, multi-faceted care
One of the most important characteristic of hospice care is that it has
set as an aim the improvement of the quality of life  of patients. In
accordance with this, care  not only includes the physical, but also the
psychological, social  and spritual requirements of  patients, and the
assistance to relatives, both throughout the duration of the illness and
throughout the period of mourning.

palliative treatment, relieving pain
Hospice care treats patients  are in the last phase of their illness.
Agonising and tortured pains and symptoms characterise this phase,
and the goal of the hospice is to alleviate these as far as is humanly
possible. The prevention of pain, thorugh the use of pain killers,  is
immediately put into effect,  thereby reducing the suffering to a
minimium, and in some cases stopping pain altogether.

emotional and psychological support of family members
Cancer is a huge psychological burden for both the patient and their
family, without respite. It is especially true throughout the last phase,
when the threat of impending death looms ever closer. Anxiety and
depression which are often experienced at this stage, must be treated
in any way possible. It is also important to prepare the family members
for their loss and to offer support to help them work through their grief.

right to life approach
Hospices consider death as a part of life and a natural process which
cannot be artificially extended or hastily shortened. The loving
treatment of a patient can fill this phase of their lives with reason, and
essence.
respect for human dignity
Hospice care respects the dignity of the patient  at all times. This
approach requires  a sincere regard  of the patient. They should be
treated as an equal throughout  their illness and  they should be
tactfully informed about their condition all the time, in a realistic
manner, but never giving up hope. Hospices respect the conviction and
integrity of every patient.

cooperation of the multidisciplinary team and the family
Patients are nursed by a team of specially trained experts. As the
basic objective is that the terminally ill person should spend the last
part of their lives in the family circle, during the course of the hospice
treatment, close co-operation with the family and involvement with and
continuous help to the family, centred  around the patient, are of
fundamental importance.

gratuity
Hospice care is free of charge for everybody, as a dignified death,
worthy of human beings, is a fundamental right of every individual.

developing the right attitude
Hospice is a special mentality, it is the fostering of opportunities for the
dying to be able to experience their spirituality, and to apply and enjoy
their physical and mental abilities. Our aim is to raise public awareness
of the problems of the dying,  and to encourage society  to cultivate a
more realistic and more accepting attitude towards death.

OUR MAIN ACTIVITIES
Home care
We provide home care, nursing for people suffering from malignant
tumours, to those who can no longer be given active therapy. Nursing
begins with a well established therapy for the symptoms.
The psychological, social and spiritual support of patients and relatives
are all parts of home care – i.e. apart from the visiting nurse, hospice
doctors, dieticians, social workers, physiotherapists volunteers, priests
and psychologists are also required.

Outpatient and Psychological sercives
The outpatient unit provides free counselling, treatment and
continuous medical control and is available to every cancer patient. The
relief of pain, gradually and preventatively,  is available continuously,
and by this means pains can be reduced to a minimum, or even
altogether stopped. Our psychologists offer  professional emotional
and psychological support, in the form of one-to-one or group therapy,
to patients, their relatives and mourners.
Day care sanatorium
The day care sanatorium of  the Budapest Hospice House
welcomes all cancer patients every Wednesday morning  to participate
in their creative and cultural programmes, which they can share with
fellow sufferers.

Educational and course Center
Our aim is to bring to the attention of  the public, the problems related
to the treatment of  seriously ill people, and that the right to decent
medical treatment, the humane treatment of symptoms  and home
nursing should be mandatory,  and enforceable. We have assumed  the
mantle of attitude-forming, information-distributing  duties, which are
connected to the propagation of hospice,  palliative, and therapeutic
education.

Grief counselling, therapy for mourners
We have regular, club-like activities and individual therapy for
mourners. Most of the participants are relatives of earlier patients we
cared for, but everybody in need is welcome.

Volunteer program
In our work voluntary helpers offering their time and work free of
charge, have an important role. They are indispensable members of the
hospice home care group, as the complex care of sufferers becomes
complete by their presence. They  are often the only people who
represent the outside world for patients, and thus they satisfy the
need for human contact and with their care, they may reduce suffering.

Mobil team
Hospice care has several different organizational forms around the
world. One of the transitional, but common forms, is the Hospital
consultation group, or the mobile hospice team.

Apart from counselling offered to the seriously ill,  and palliative
therapy, the members of our team provide emotional support and
guidance to the  personnel of institutions where workers  experience
loss,  and in the postgraduate training of care givers.

contact possibilities:
Hungarian Hospice Foundation
Budapest Hospice House
1032 Budapest, Kenyeres u. 18-22.
Telephone/fax: (00 36 1) 388-7369 or 250-5513,
e-mail: info@hospicehaz.hu  homepage: www.hospicehaz.hu

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