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[Please
note that the material on this page was current when
it was first posted. For up-to-date information on this
topic, visit the Alzheimer
Care section.]
10
Signs of Caregiver Stress Media Kit
Jan.
4, 1999
Caregiver
Profile #1
An
Alzheimer Caregiver's Search for Meaning
At
23 years old, fresh out of university with a BA in Geography
and a new husband, Linda Furlini Mulé of Montreal,
Quebec was thinking about pursuing a Master's degree
and then, who knows?
"I
got married in May, 1979," says Linda. "By
August, I was working as a teaching assistant. Then I
went to help my dad with his business a couple of days
a week. As time went on, I just assumed more and more
responsibility at his store. I saw him make a lot of
mistakes and react in strange ways. And slowly, everything
else got obliterated. I just took over the store and
I was running the whole thing."
At
23 years old, Linda had embarked on what has since become
a 19-year odyssey of Alzheimer caregiving. And not just
for her father who died in 1989, after a 10-year battle
with Alzheimer's disease. At the time of his diagnosis,
her mother had also begun showing subtle signs and symptoms
of Alzheimer's disease. "My sister and I knew something
was terribly wrong but outsiders couldn't see it." Her
symptoms evolved much more slowly and she was adept at
hiding them. It took five long years before an Alzheimer
diagnosis for Linda's mother would be confirmed. Throughout
the whole time, people said, "It can't be the same
as your father."
Today,
Linda's mother is in a nursing home. She doesn't speak.
She barely opens her eyes. She's on medication to calm
her spasms. And she's virtually confined to bed. Visiting
her is difficult.
"You
see this person whom you've known your entire life slowly
change. Even from the beginning of this disease, there's
a change. You lose them. You don't understand why. And
the losses just compound to the end. So you search for
meaning. You try to relate it to something in your religion
or something that you know about and you have a very
hard time making the connection."
Linda's
search for meaning has taken her back to McGill University,
Montreal, where she's in the final year of a Master's
degree program in Educational Psychology. Her major research
paper is an in-depth study of three daughters reflecting
on their Alzheimer caregiving experiences. The research
is fuelled by Linda's need to understand why. "Why
I had such trouble getting services and support. Why
this disease is so misunderstood. Why others cannot see
the seriousness of this disease." Linda believes
the answer has to do with a general lack of understanding
of what she calls "the dimensions of dementia." Alzheimer's disease is so pervasive and its consequences are so far-reaching
that it's difficult for outsiders and even family members
to relate to what caregivers tell them because it's so
far removed from anything they have experienced.
Alzheimer
caregiving has made Linda Furlini Mulé a more
reflective person. It has changed her outlook on life
and made her realize that what is important in life is
how you live day to day. She has learned to focus on
her own needs, moving from the city to the suburbs, taking
vacations with her husband and teenaged son and socializing
with her friends. She is also giving back to the Alzheimer
Society which handed her a lifeline during those early
caregiving years. "Of all the people I wrote to
about my dilemma, they were the only ones who responded.
And they didn't tell me, it can't be Alzheimer's disease. "
Today,
Linda is President of the Quebec Federation of Alzheimer
Societies and a board member of the Alzheimer Society
of Canada. She has held workshops on Alzheimer's disease
and caregiving. And she has organized support groups
for people in the early stages of Alzheimer's disease and
their caregivers, something she wishes had been around
for her parents.
Alzheimer
caregiving has consumed most of Linda's adult life. Yet
she remains dedicated to improving the situation for
others. Her caregiving, research, volunteer work and
future job aspirations all support her mission to communicate
what goes on with Alzheimer's disease and make it visible.
She encourages other caregivers to do the same. And she
asks family, friends and health professionals to listen
to what caregivers tell them and "don't deny the
caregiver's reality."
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