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[Please
note that the material on this page was current when
it was first posted. Please
see the Alzheimer's Disease Fact Sheet for up-to-date figures.]
[From
our January 1999 Alzheimer Awareness Campaign]
Me?
Stressed? Not really!
When
older caregivers finally get in touch with Barb Moffatt
they have usually been coping just by the seat of their
pants.
Moffatt,
a nurse, is Co-ordinator of the Community Alzheimer Respite
Enrichment (CARE) program in Kingston, Ontario. Her clients
are often desperately seeking relief from the stresses
of caring for someone with Alzheimer's disease.
Over
300,000 Canadians, or one in 13 people over the age of
65, have Alzheimer's disease or a related dementia. About
half of them live in the community, usually cared for
by a daughter or a spouse. By the year 2030, it is estimated
that over ¾ of a million Canadians will have Alzheimer's disease and related dementias.
Moffatt
says women caregivers in the 40-50 age range seek help
much sooner. "They go for everything they can get,
particularly if they are juggling the responsibilities
of caregiving with working and raising a family."
However
a considerable number of Alzheimer caregivers are seniors
looking after their spouses. For them, looking after
someone with Alzheimer's disease is a very private thing.
They've always managed on their own. And the prospect
of a stranger coming into the home often prevents them
from seeking help.
"Many
rely on family and friends," says Moffatt. "Others
just accept it as their lot in life and soldier on alone
for a long time, sometimes for the whole duration."
This
worries Dr. Julie Chandler of Yarmouth, Nova Scotia who
sees seniors with their own health problems struggling
to care for their spouses with Alzheimer's disease.
Dr.
Chandler is a medical director for three nursing homes
in her area; a consultant in the Department of Psychiatry
at Yarmouth Regional Hospital, assessing and diagnosing
people with Alzheimer symptoms; and an Alzheimer Society
volunteer and support group leader. She counsels family
caregivers through all stages of Alzheimer's disease and
knows just how insidious and compounding caregiver stress
can be.
She
has seen the fear and denial surrounding the diagnosis.
The anxiety and depression that comes from feeling overwhelmed
by caregiving responsibilities and withdrawing from enjoyable
social activities. The exhaustion and anger from trying
to do too much for too long. The inability to concentrate
on tasks. The lack of sleep. And the increase in health
problems.
"I
see people reaching the end of their rope, in terms of
their patience.Twenty four hours a day. Day after day
after day. That's an awful lot to expect from a caregiver."
Dr.
Chandler reminds caregivers that Alzheimer's disease is
a progressive illness. "Even with new medications
available, we have nothing that stops it. No matter what
you do, the person is going to get worse." And it's
not the caregiver's fault.
"I
tell caregivers, if you keep on at the rate you're going,
you're not going to be any good to yourself or the person
you're caring for."
This
strong medicine often jolts caregivers into seeking help
such as asking relatives to stop by so the caregiver
can take a break, arranging for home care visits, enrolling
the person with Alzheimer's disease in a day program, finding
out if short-term respite beds are available at local
nursing homes and getting a housekeeper to come in once
a week.
Barb
Moffatt advises caregivers to get all the information
they can on Alzheimer's disease and caregiving, share the
information with family and friends, develop a care plan
to identify their support system, whether it be family,
friends or formal support, and use that support system
in the best way possible. "Just having some measure
of control over the situation helps to reduce the caregiver's
stress level," says Moffatt.
The
Alzheimer Society runs support groups across the country
where caregivers can talk to each other, find out how
others are coping, or just ventilate. The Society also
provides information about community resources, as well
as pamphlets, books and videos about Alzheimer's disease
and caregiving,
Support
group leader Dr. Chandler says the support group is often
the one place where caregivers discover: Everybody feels
the way I do. It's not just me. I'm not such a terrible
person.
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