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Pre-bereavement |
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 John
F. Tomczak is the author of Shared Knowledge - Dealing With
Bereavement.
John's passion is to make all Canadians
aware of how hospice societies can help
them and their loved ones at a time
of need.
John
has been recognized for his many
exemplary contributions as a board
member of Victoria Hospice Society and
the Independent Living Housing Society
as well as a founding member of Canada's
first bereavement self help group.
John is
the owner of
bereavement.ca
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Pre-Bereavement
By John F. Tomczak
While “Pre-bereavement” is not a
common term it is used to define the time between
the diagnosis of a terminally ill condition and that
person’s death. The time before the death may be
short or it may be quite long. It is a time for
hope, for understanding the illness, a time to seek
out what is best for one’s loved one, a time for
prayer and reflection but it is a most difficult
time for the caregiver.
Our society has a difficult time
dealing with the death of a loved one. It is not a
subject that we enjoy talking about. The terrible
news of a sudden and tragic death leaves the
community in a state of shock, anger, resentment and
misunderstanding.
All of us have ample evidence that
all life is fragile at best and sometimes very
short. We all try to live our lives as best we can
with the expectation of experiencing all the good
that life can offer us. When illness strikes our
households we are suddenly confronted with the fact
that the life of our loved one could be shortened.
We may discover that we have neglected some of the
basic responsibilities in our relationships. We
somehow never got around to making our wills nor
providing for the future should the illness prove to
be serious. At this desperate time of our lives
caregivers must learn to understand the need to seek
assistance early in the stage of home care.
Pre-bereavement care can consist of
some very simple acts. A visit, offering to sit
with the ill person so the caregiver can have a few
hours for themselves, making a dish that only needs
to heated up, providing transportation to the
Doctor, but mostly it is simply being there to help
without being asked.
Sometimes this kind of help is not
readily available in the community. Hospice
Palliative Care is the only place that I know of
where the term pre-bereavement is used. I feel that
it is the responsibility of the community in which
we live to provide this service. Perhaps more
thought could be given to suggesting that our Faith
Communities provide nursing care as part of their
responsibilities. This has been done in a few parts
of Canada. We all know that our Faith Communities
are largely comprised of the older segment of our
population so it would be reasonable to include such
care as part and parcel of their services.
After the death of my wife, Collette,
I took part in the Walking Group Program at Victoria
Hospice. The following year I was one of the
founding members of the Bereavement Self Help Social
Group. In a very short time I met quite a few people
who had experienced the death of a loved one.
I can remember some of the first
walks and some of the interesting talks we had. I
became aware that I now knew some very caring people
who seemed to know how I felt without me going into
too many details of my own experience. e all had
the same problems of a house that was now too big
and what on earth were we going to do with all that
furniture. Then there was all the stuff the kids had
left in our garages and basements. Some very
creative suggestions cropped up such as politely
asking the children to retrieve their stuff and
working to a dead line. We gave that up however
because I suppose none of us really wanted to change
too much in our lives at the moment.
As we got know each other a little
better and became more trusting of our new
relationship; the talk turned to more personal
things. We grew more comfortable in discussing the
illness of our loved ones and the treatment they
received, what was good and what wasn’t quite what
we had expected.
After a time I noticed that
discussions about the illness and the treatments
fell into three quite separate situations. At first
I didn’t think too much about this but as time went
by it became clear to me that there was a definite
pattern of sorts about these stories. Of course
there were differences and I was surprised to hear
how intense people’s feelings were and how difficult
some folks found dealing with them. Thinking back
about my own experiences I should not have been
surprised.
About four years after Collette’s
death I started to keep track of what I had learned
and gradually found a way of recording these stories
and experiences. I made no attempt to ask for
information from my friends rather I just listened
without judgment or comment on my part.
This is in no way to be thought of as
some kind of a survey, rather I have tried to simply
relate what I have heard from individuals. The
frequency of the stories does not matter at all.
The intent here is to simply remind all of us that
every person may have had quite different
experiences and we must learn from these stories
that may be quite apart from our own.
This is what I have learned from the
caregivers from the time an illness became apparent
to the death of the loved one. I hope that by
relating what I have learned from my bereaved
friends will be of some help to those who have had
similar experiences.
Prior to knowing about the illness.
A feeling that something is wrong
because there has been a change in behavior. In the
case of a man perhaps the weekly golf game is put
off for some vague reason. A woman may prefer to
stay at home reading a book instead of teaching her
girl friends how to play bridge. The caregiver will
somehow get a signal that something has changed. The
signal many be very slight and may only be
recognized if repeated a few times. A spouse that
goes from a person that shared every single part of
their day has suddenly become reluctant to discuss
things in detail. There is a feeling of
secretiveness that was not there in the recent past.
Small changes in normal activities
are noted. Things that were easy to reach now need
a step to reach. From time to time a grimace may be
seen and no explanation given. When asked an
inappropriate answer will be given with
uncharacteristic abruptness.
Offers of help doing ordinary tasks
are refused. Vague remarks like, “it is nothing, I
just need a good night’s sleep”, are the usual
answers to offers of help.
The caregiver now has been given one
or more signals and being concerned suggests they
seek some medical advice. This is usually responded
to in quite different ways and I am sorry to say on
gender differences.
Some men, for reasons unknown to me,
are somewhat reluctant to seek medical advice. Note
I said, “Some men” and I have the feeling this is an
age bracket thing. I have noticed that younger men,
like my sons, have no difficulty in seeking Medical
advice. That being said you should remember that
most of the men I have met are roughly in the same
age bracket as myself. Women seem to be a little
more conscious of their health problems and have
less difficulty in asking for help from the Medical
Profession. Keep in mind I am just relating what I
have been told. As for myself I am known as the
wimp in the family and frankly the Canada Medical
Plan doesn’t owe me a thing.
I have identified three different
scenarios.
First situation
The ill person decides to see the
Medical Practitioner, alone.
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Insists on seeing the Doctor
alone.
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Instructs the Doctor to not
discuss the visit with anyone.
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When questioned about the visit
makes light of whatever is wrong and repeatedly
insists there is nothing to worry about.
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Questions about the visit to the
Doctor are answered in a vague way but phrasing
the answers so as not to worry the spouse or
partner.
Results during the illness
When it becomes apparent that the
spouse is indeed ill the caregiver is put into a
difficult position.
There is the terrible feeling of
being left out of something that they have every
right to share. I have heard cases where folks have
shared every moment of their lives together but when
a serious illness appears the relationship literally
falls apart.
The spouse feels they are not able to
help and in fact they may feel their help is not
required or needed.
Any information given to the spouse
is general if not downright sketchy.
If the Doctor has been instructed not
to discuss the illness with anyone it places the
spouse in an untenable position. This situation is
even more devastating if there are children.
Results after death
After the death of a loved under the
above circumstances the survivor is left with
feelings that are difficult to understand and to
live with.
The terrible feeling of them being
left out of the situation and not knowing why. They
were not able to help and in fact were prevented
from helping.
The information given to them was
minimal at best and was totally out of the
characteristics of the relationship.
When and if asked the doctor may
still feel bound by the wishes of the loved one and
will refuse to discuss the illness in any detail.
The spouse if left with the feeling
that more could have been done if only he or she had
been allowed to share information.
The spouse may have feelings of anger
because of being left out of the care given to the
loved one.
Anger at the medical profession is
quite common in such situations.
The spouse has to deal with second
guessing friends and relatives.
Some people feel guilty at not ever
having had permission to assist.
I have heard some heart rending
stories that fit the above in exact detail however
they are happily in the minority.
The second situation
The ill person goes to see the doctor
alone but shares all the information with the spouse
or partner.
Results during the illness
The couple attends the second visit
to the doctor and are both given the same
information. Some couples will have a list of
written questions for the doctor. They talk freely
about the illness and what the future holds for both
of them.
Information is freely shared with the
children, relatives and friends.
The couple has feelings of being able
to share the good and bad news freely. Plans for the
future are made in a spirit of openness.
The couple has confidence in the
medical profession because they are included in all
the decision making, together.
Results after the death
After the death of the loved one the
survivor is left with the good feeling of having
been part of everything that could have been done.
There was no second guessing about
the treatment or choice of doctor.
Third situation
Both attend at the first visit to the
doctor.
Results during the illness
Because both attend the first meeting
there is little chance for misinformation.
The doctor is then in a much better
position to discuss the illness and the options
available.
There is a spirit of openness with
the family and friends.
Results after the death
The spouse or partner, as in the
second situation, is left with the good feeling of
being part of the treatment and of knowing that
everything that could have been done was done.
Some comments I have heard
I am sorry to say that in some of the
stories I have heard the bereaved person never did
have the opportunity of talking to the loved one’s
Doctor at any stage of the illness. The feelings of
being left out are real and I suspect they may never
go away.
Many people blame the medical
profession for lack of information and other
options. The sad thing is that the patient, in most
of these cases, has prevented the doctor from
speaking to the spouse about the illness in the
first place.
Regardless of what has gone on
before; the family once Hospice had been chosen to
care for the patient the change is dramatic. One
hears comments like, “a great burden was taken off
our shoulders, and there is no doubt in my mind that
we made the right choice, our loved one died in
peace and pain free”.
Very few couples had made it a habit
of going to their Doctor together. They may have the
same Doctor but are seen separately.
Less than half of the bereaved were
able to talk to the doctor alone at some point in
the illness.
Many people, to this day, are angry
that they didn’t feel completely a part of the care
until they came to hospice.
Some people were not satisfied with
their general practitioner but had high praise for
the specialists and the medical staff at hospice.
Many felt the doctor’s discussions
hard to follow and indeed both spouses heard the
explanations differently. It seems one heard one
thing and the other heard something different.
Some bereaved people felt that they
were given only half of the information necessary to
make an informed decision. A few felt the doctor
talked down to them. Then one hears that no options
were talked about and in some cases treatment may
have been delayed.
When one considers that the medical
community has as the cornerstone of their
responsibilities the words “First, do no harm”; it
is a mystery some of them do not recognize that
being curt, offhand and half listening is in direct
contradiction of their oath, “to do no harm”. I
speak from bitter experience.
My comments
After reading over the experiences of
my friends I have to say that I have shared most, if
not all they have experienced in one form or
another.
Collette was a private person and it
was some time before I was allowed to talk to her
doctor. However I insisted in a private talk and
soon I was a part of the process. I made sure
Collette shared the responsibility of taking her
medicine on time with me.
We also heard things differently and
I resorted to asking one of our sons to be part of
the discussions with the doctors as the illness
progressed.
Collette had a major operation to
remove a tumor from her left lung. Unhappily the
operation was as at best a partial success. It was
thought that a further operation would help but at
the very last minute, in the Hospital, the surgeon
had to tell us there was nothing more to be done.
I will never forget the poor man
sitting close to my dear Collette on the bed and
with tears in his eyes telling her that he could do
nothing more for her. Collette after hearing the
very worst news a person can hear simply put her arm
around his shoulder and comforted this caring gentle
man.
There are some things in my life that
I will never forget.
Recently I had an experience
concerning pre-bereavement that touches on another
side, if you will, of this part of our lives.
A dear friend and neighbor of ours is
very ill and is at home recuperating after a very
serious operation. We have learned that her life
will be quite short but she has a strong spirit and
is trying to be as independent as possible.
Her husband asked me to stay with her
while he went to see his lawyer about their estate.
I came into the house and the husband was beside
himself because his wife flatly refused to have a
“baby sitter” in the home. He and I talked the
situation over and I agreed to sit outside the house
in case she needed me. I sat on a bench in the front
yard trying to make some sense of all this before my
friend returned home. It finally dawned on me just
what was going on.
This proud and courageous woman has
been left with very little control over her
life. Simple household tasks are now beyond her but
there were some things she can control and not
having me act like a “baby sitter” is one of
them. When my friend got back from his errand we
talked it over and he and I began to understand that
he, by asking me to be in the house without first
asking her permission, had taken one more bit of her
independence from her.
Of course he thought he was doing the
right thing but he forgot to ask his wife for
permission. He immediately go up went into the
bedroom apologized and received one of little smiles
that us husbands recognize as saying, “I forgive you
but don’t do it again”. He then wisely came back
outdoors and we continued our discussion.
We sat there and after agreeing that
us husbands are indeed a sorry lot; he told me a
story.
Their daughter had recently paid them
a visit. Because she is concerned about what her
mother can and can’t do, she took it upon herself to
rearrange things in the house and more particularly
in the kitchen in a way she thought would be helpful
for her mother.
The results were predicable and
immediate. The mother now had no idea where her
things are and lets every person know all about it.
My friend is now racking his brains to put
everything back as it was. Believe you me this is
not a man thing!
Another little lesson learned
It is so easy to do the wrong thing
for what one believes to be the right reason.
But life being what it is I have
learned that there is a bit of humor in just about
every situation A friend of mine wrote an article,
“Let caregivers define their breaks”, in which she
encouraged caregivers to take a “stolen moment” for
themselves now and then.
Here is my stolen moment.
Collette wakened at exactly seven in
the morning and was as hungry as a bear and some
days just as cranky. My job was quite simple. Hurry
down to the kitchen, make breakfast and get it up to
my starving wife as fast as I could. Then I would
prop her up in bed, make sure everything was as she
wished and keep her company while I managed to get a
cup of coffee for myself.
Then it was tidy up time, de-crumbing
the bed and so on. Time for her to rest and time for
me to finish my breakfast, tidy up the kitchen and
sack out on my favorite sofa. You have no idea how
much I looked forward to my stolen moment on that
sofa. I used to play a little game to see how fast I
could get my chores finished and get down on that
sofa.
What I remember most is how pleased
she was to have me caring for her.
Collette was ill for some two and a
half years. Most of that time was good for us and I
enjoyed looking after her. In many ways her illness
was a special time of our lives together and it was
our illness not just hers. I have had many men and
women tell me the same thing but of course in many
different ways.
When you are reading of Collette and
my journey you will have the sense that we were
blessed with not only the help of Victoria Hospice,
but that of our family and some of our closest
friends.
I wish it has been the same for all
of our friends but sadly that is not the case.
Because the faith community Claire and I belong to
has an aging population we are very conscious of the
need for pre-bereavement. Unfortunately the serious
illness of anyone, at times, is perceived as being
just bad news, as it were; instead of an opportunity
to help.
But it is not fair to judge people’s
thoughts by their actions in a situation when they
are unsure of how to help; rather we could ensure
they know how to help. Even making sure the
community is aware of a person’s serious illness is
difficult but it must be done if meaningful and
timely help can be given.
In the last twenty years Canada has
gone from almost no palliate care to speak of to now
where there is hospice palliative care in almost
every community of any size. In this brief time this
unprecedented growth is mostly due to the word of
mouth messages of the bereaved. We have to remember
that change only comes when people see the need for
change and act on their needs. I am sure that every
person in Canada wishes their loved one to have a
peaceful and pain free death, and this comes closer
to reality every year.
The next step is awareness for
pre-bereavement. Somehow we have to convince our
communities that the care of the serious ill is the
responsibility of all of us and not necessarily that
of the medical community alone.
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| Copyright John
F. Tomczak. All rights reserved |
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For more information on bereavement support, or to
purchase Shared Knowledge, click on the
book cover. |
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