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A delicate balance |
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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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A Delicate Balance: Living Life at the End of
Life
By John F. Tomczak
At the risk of stating the obvious we
do indeed live in changing times in the care of
those at the end of Life.
Well, that is just about as bad as,
“It was the best of times and the worst of times”.
But seriously we need to spend a bit of time
thinking of how far our culture has moved forward in
this part of our collective life.
It was Saint Elizabeth of Hungary who
introduced the concept of being responsible for the
well being of our fellow man. Her teachings led to
the concept of hospice palliate care as we know it
today.
The definition of hospice palliate
care could embrace just making a person comfortable
to total care which may include every kind of
assistance known to us at this time. We need to
understand how this concept has become a part of our
lives and talk about how the many disciplines work
together and are part and parcel of the care at the
end of life.
I was born at the end of the Spanish
Flu that almost devastated the western World at the
end of World War 1. I can remember my Mother telling
of that terrible time: how her Mother was seldom at
home because she cared for many ill people in the
church basement and they just died. The few Doctors
and Nurses had little resources except bed rest and
cooling cloths. There were no medicines and little
understanding of how it was passed from one person
to the next.
So I grew up in a time where the care
of the seriously ill depended solely on the Doctor
and the Nurse. Those were heroic times for those
pioneers in the health care. I hasten to mention I
grew up in Saskatoon Sask. the birthplace of our
Canada Health Care Act.
Today, some eighty six years later
the end of life care includes a never ending listing
of specialists who have wonderful machines and most
importantly the training and background to care for
our citizens. This knowledge includes doctors,
nurses and a list of others too long to mention. We
have this help simply we wanted it. The most obvious
examples are nurse practitioners and midwives.
Besides these few examples there is the field of
naturopaths and others. Not everyone agrees with the
choice of some treatments available but they are
part and parcel of the heath care scene and should
be respected.
Because I try to speak only from my
own experience I think it only proper to tell you
the story of my wife, Collette’s, illness and death.
Collette, as a child spent two years
in the sanitarium at Fort Qu’Appelle in Sask being
treated for T.B. Since that time she had regular
chest x-rays as part of our nation-wide statistics
on this illness. During one of these routine visits
to the chest clinic a tumor was found on one lung.
The tumor was removed but soon afterwards many
smaller tumors were found in both lungs.
Collette had been a heavy smoker all
of her adult life and her response to this terrible
news was, “it is my own damn fault”, and she never
smoked again.
We had some time together and we made
the most of it. As time went by we both knew that we
had the best help we ever could have imagined. We
had our children, friends, doctors whose compassion
is still very real to me. Nurses who appeared just
when we needed them. Hospice became a part of our
life and of course still is a part of the family
life and because I am a bereaved person. My wife,
Collette died in her own bed in 1987 after an
illness that consumed our lives for two and a half
years. It took me some time to understand that in
those two and a half years that we had lived through
the best and worst times of our life together.
The worst time was that we both knew
that our future hopes and fears were never to be.
The best part is the memories of a very happy and
fulfilling life together.
But what was the underlining gift
that all of the caregivers brought to help us? How
was the hospice doctor able to sit quietly with
Collette and gently explain that as a doctor she was
not very good at delivering babies but was very good
at controlling pain. And that wonderful nurse who
after massaging Collette’s feet had a good look at
that troubling nail on one big toe and said’ “well
I’ll fix that” while I stood there trying to work up
the courage to ask that she do that for Collette.
That was one of my little jobs most of our married
life but now I was worried that I would not be able
to do it properly!
It would be easy to say that those
who cared for Collette were just doing their job but
that would be unfair and out of keeping with their
training and expertise. Within an hour after
Collette’s death one of the counselors from hospice
arrived to help us. I can remember how this caring
person explained Collette’s death to our
grandchildren in such a gentle way that is
remembered to this day. When I had time to reflect
on the care that Collette received I began to
understand that there must have been some sort of
plan that while unknown to me was somehow guiding
the caregivers.
The phrase, “A Delicate Balance:
Living at the End of Life” is an apt phrase to
describe Collette’s last few days. It was a time of
peace, freedom of pain, being with her family and
reassuring us with her tiny little smile that
everything was just fine.
When I reflect on the seamless care
that Collette received I know that somehow there was
an unspoken plan that guided the caregivers. The
roles overlapped without seeming to do so. Nurses
gave us instruction on the use of “depends” just as
a matter of fact. Doctors spent time comforting and
reassuring us that while morphine is a powerful
opiate there is no fear of addiction when it is used
for pain control.
Care at the end of life can be best
described as palliative care. For a person who has
been ill for some time the transition from an
illness state to one that nothing but palliative
care is appropriate is sometimes a long and
difficult journey. It requires understanding,
gentleness and compassion. Usually there many
caregivers involved.
But the help given by caregivers of
many different disciplines in a palliative care
situation in our home demonstrated how easily people
can work together with but one goal in mind.
It is easy to take for granted the
way caregivers work together and even sometimes take
the role of others for a time. The way the nurses
talked to me in the last few day of Collette’s life
was, on reflection, a gentle form of bereavement
support. During the past eighteen years as a
volunteer at Victoria Hospice I have had hundreds of
people tell me that their bereavement journey
started with the nurse at the bedside of their loved
one. However nurses are not alone in this role.
There are doctors, social workers, clergy and
volunteers who somehow find the right words to say,
give the hugs at just the right time and all those
little things we humans need from one another.
However we humans are social beings
and I am no different. After four and a half years
of bachelorhood I met Claire and we have had some
fourteen of the most interesting years of my life
together. Her husband; whose name was also John by
the way, died in 1990. I frequently call Claire
Collette and she always answers, thank goodness.
Hard for her mix up our names I might add. We speak
of both Collette and John most days. They are a part
of our lives.
Claire and I work together at
Victoria Hospice with the walking group and
bereavement self-help social groups. We also work in
our faith community to bring an awareness of what
hospice palliate care can offer when needed. While
there is much help in the community sometimes when
folks need it the most it is hard to find. We just
heard that St Andrew’s Cathedral has recently hired
a nurse. A major step forward!
Well as usual in most folk’s lives I
had an epiphany or two that has caught my attention.
he first one was in Saskatoon during a lunch at a
palliative care conference. I had something stuck
about half way do and it was painful. I tried to
swallow but the pain just got worse. Thank God my
friend Lynn Cummings was at the same table. She knew
I was in difficulty and got me out of the dining
room. She then got some bread and had me take very
small bites and got me to swallow. Naturally I did
as Lynn said and gradually the pain went and we
relaxed. Just then Dr. Michael Downing came out and
asked if he could help. Lynn told him what she had
done. Michael asked where did she learn to do that.
Lynn said, “From my Grandmother”
That was my introduction to Shared
Knowledge.
The second epiphany was while I was
in the Jubilee Hospital the day before Doctor Dutton
fixed my heart. A man came by and introduced himself
as a hospital visitor from the First Open Heart
Society. We had a great chat and he talked about my
operation in the morning, showed me his scar on his
chest and on his right leg and put me at my ease.
That was my second introduction to
Shared Knowledge. Now I had the doctors explain the
operation and the risk and time of recovery and all
but this man had been there, done that and it was
different. I never saw him again.
Sometime later I read John Ralston
Saul’s book, “On Equilibrium” no easy task I assure
you but it then became very clear.
The only way we humans learn is from
the wisdom and experience of others. Through the
ages the only way to learn from others was by
observation. With the advent of the written and
printed word knowledge has been shared from
generation to generation. The health care system is
research driven to a large extent. In other words we
do share our knowledge sometimes without us knowing.
And that thought brings us back to
the caregivers at the time of Collette’s death. This
good people brought not only their own knowledge but
a willingness to share it with other caregivers.
What I was seeing was the results of long term
training and cooperation that is ingrained in
experienced health caregivers.
I have mentioned both Claire and I
have be very active volunteers for a long time.
Eighteen years in my case and fifteen in hers.
During that time we have met some four thousand
bereaved people. Through the years I have collected
and written many stories about bereavement. After
two long years of interviews my friends have allowed
me to write about their Bereavement at Victoria
Hospice. My book Shared Knowledge was published last
spring and I still have hopes of getting my money
back.
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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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