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Seven Stages of Caregiving |
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THE SEVEN STAGES OF
CAREGIVING
Judy
Cutler and Bill Gleberzon
Over two million Canadians provide informal care at
home to elders, according to a recent Statistics Canada study. I was one
of them.
I cared for my mother at home on a full-time basis
during the last two years of her life.
 My
role as an informal caregiver was painful, of course, but more than that,
it was personal, profound, even sacred. My mother and I really got to know
each other - unconditionally. There were no barriers between us as
individuals, and we went beyond defining each other by our relationship.
We were just two people trying to make it through a rough time together,
but in fact being totally isolated with individual suffering. The actual
details are a blur in many ways as I have tried to put them behind me and
get on with life. Still, to dig deep into it all feels important on many
levels: to really put closure to the trauma of the experience, to
hopefully benefit other informal caregivers, and in some way to pay
tribute to what my mother and I shared.
I have often been asked what those intense years as
an informal caregiver for my mother were like. This has led to a mission
to share my experience with others who might find themselves suddenly and
unexpectedly conscripted as an informal caregiver for a loved one. With an
aging population and increasing focus on home care, this will become more
likely for more people.
I spent a long time wondering how to put what
happened during my years of caregiving into words. My challenge was to do
this in a meaningful way. Then, suddenly, for some inexplicable reason,
Shakespeare's description of the seven ages of man flashed through my
mind. Where this inspiration came from was a mystery, really. My long
background in theatre? Or, some spiritual insight? Whatever it was, it
gave me the idea to explore the stages that I had gone through as I cared
for my mother. Without trying, I came up with the seven stages of
caregiving. Thank you Shakespeare!
The first stage was, of course, SHOCK & NUMBNESS. My
mind froze as I heard the doctor tell my mother that she had colon cancer
and that immediate surgery was essential. However, my body went into
action. I took care of the required planning with the hospital and called
my sister and my son - the rest of the family had to wait for a less numb
moment. And, of course, I could hear myself saying all the right things to
my mother. It felt like a dream - someone else's life. The truth was that
my mother's illness propelled me into unfamiliar territory and an
unforeseen occupation - and pre-occupation.
The second stage hit me quite quickly and I went into
a PRACTICAL MODE. With the surgery, we won the battle, but not the war.
Her cancer had already metastasized. I entered a process with my mother
that would last just over two years - every day and every night, through
the bad and the better times. It was stark reality with no escape, for
either of us. I put my career on hold, and threw myself totally and
completely into the task at hand. I became a caregiver - taking one step
at a time and one challenge at a time.
Today I look back and think that I probably qualified
for some kind of degree, if only honorary, because I became so proficient
in contributing to medical assessments and at times solutions - after all
I was well placed to see subtle signs. My advocacy skills became honed as
I fought for quick and effective responses to my mother's needs. I was an
integral part of the medical team right from the beginning - at home and
in the regular hospital stays. My duties included coordinating social
visits - not too many guests at a time, not too many gloom and doom faces
around the bed, and always enough food to create a festive atmosphere. I
also tried to maintain some semblance of normal living in the house - and
humour. My mother kept asking me what she would do without me. I dread to
think what those last years would have been like for her had I not been
there.
By the time I slid into the third stage, AUTOMATIC PILOT, I did not even
think about what came next. I just did it. Shopping. Cleaning. Planning
meals, but actually eating little - - I only eat when I'm happy. I
acquired the facility to do therapeutic procedures and learn the medical
jargon. The days and nights blended and I slept when I could, and most of
the time didn't. Eventually I slept beside my mother because it was easier
to roll over and check her out rather than move from one room to another.
Even when I did have a few hours away from the "scene" once in awhile when
my sister came over from Scotland, or my son took over, there were no
breaks from my emotional or practical preoccupation - and responsibility.
I remember going to a concert with my son. Sitting there, I remarked to
myself how amazing that everyone there was upright.
As my mother's health deteriorated, and we had to
endure regular and long waits in the emergency rooms until a bed was found
for her, I slipped into the double edged Stage of RESIGNATION to the
situation and BURN-OUT. It was harder and harder to relate to friends and
family, who were trying to distract me when all I wanted to do, and could
do, was to focus on the situation at hand. I was constantly in a fog of
exhaustion and emotional depletion - and besides, I had nothing to talk
about except medical shoptalk. In fact, my strength came from the health
care workers who had become "pals" with me -- and my mother. We turned to
their world to provide a structure and some objectivity in the situation -
as well as hugs, laughs and even tears from three or four doctors and
nurses who really became close to us. But, underneath was the constant
adrenaline rush, softened temporarily by little treats such as chocolate
cake, a bubble bath, a walk in the sunshine. My little comfort cushions.
Near the end, the emaciated body I was caring for (at
home and finally in the hospital) wasn't the person I knew. Only my
mother's voice remained poignantly familiar. My all-consuming exhaustion
and ultimate sense of helplessness, not to mention the long anticipation
of the inevitable took its toll. My resilience was beginning to wane. I
have to admit that my mother's death brought a momentary SENSE OF RELIEF
for me. This brief stage ended our tough, but very special passage
together.
Of course, the next stage kicked in immediately as
GRIEF took over with a deep sense of loss - and another change in my life.
Time heals all, it is said. It took me a year just to begin to recover
physically and mentally. I had lost a lot of weight and any real sense of
who I was. Although I had used up all my savings, it was impossible to
rush back to anything. I just didn't have the stamina. I mortgaged my
house and eventually sold it, living off the proceeds for as long as I
could.
In many ways, the hardest part of the healing
process, however, was the final stage of caregiving: RE-ENTRY. After so
many years secluded in a very private space, it was no small feat to face
society, the world -- the job market. I certainly wasn't the same the same
person I had been. And, I became aware that everything around me had
changed too. Three years is a long time. I remember the first job
interview I had. It felt like I had come from another planet. It became
clear to me that I had to reinvent myself, to redefine myself in order to
renew my inner strength.
I eventually got a job in a field different from the
one in which I had worked for over thirty-years before my mother's final
illness. It wasn't easy but I managed to successfully transfer the skills
that I had honed in my previous occupation to a new world. My executive
position with a national seniors' organization gave me the opportunity to
speak and intervene in practical ways on behalf of informal caregivers -
described as "the silent victims in a silent system" in a national study
on home care I helped to coordinate.
Knowing what I know now, would I do it again? Could I
do it again?
At the time there was never a question of whether or
not to care give for my mother. When the need arose, I just did what
seemed the natural thing to do.
The key lesson I learned from this experience is not
especially profound. Since I am here to tell the tale, I'm convinced that
what I learned works and I continue to be guided by it -- take one day at
a time and one challenge at a time. It's as simple and difficult as that.
How can I sum up those last years with my mother? Moving from
Shakespeare to Charles Dickens, "it was the best of times, it was the
worst of times . . . ."
Permission to reprint this story was granted by Canada's Association for
the Fifty Plus -
www.50plus.com
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