820-Lancaster Fanning, Saturday, November 14, 1998
Coping With Alzheimer’s Disease
PHILADELPHIA (Philadelphia,
Co.) - Approximately four million
Americans are living with a disease
that robs them of their memories
and their ability to take care of
themselves. It is Alzheimer's dis
ease, and there is no known cure.
According to a 1993 survey, 19
million Americans said they had a
family member with Alzheimer's
disease. These family members
must not only take care of their
loved one, who is no longer able to
care for himself or herself, but must
deal with the loss of the person they
once knew. In addition there are
financial strains placed on the fam
ily, and a series of hard decisions
and sacrifices that affect the entire
family.
More than 7 out of 10 people
with Alzheimer's disease live at
home. Almost 75% of the home care
is provided by family and friends,
the remainder is "paid" care costing
an average of $12,500 per year.
Families pay almost all of the out
of-pocket, because Medicare does
not cover the cost of chronic care.
Meanwhile, the average cost for an
Alzheimer's patient to live in a
nursing home is $42,000 per year,
but can exceed $70,000 per year in
some areas of the country.
One of the biggest problems fac
ing Alzheimer's families is what
they feel they must face this trial
alone. Many feel it is a private fam
ily matter that the family must deal
with. Others feel they cannot afford
the many services that are avail
able to help Alzheimer's families
such as respite care, adult day care,
or in-home care. November is
National Alzheimer's Awareness
Month, supported by the
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Alzheimer's Association of
Southeastern Pennsylvania. The
Alzheimer's Association of
Southeastern Pennsylvania is here
to help local families who are facing
these difficult decisions, and are
unsure of where to turn. One
woman who has enlisted the help of
the Alzheimer's Association of
Southeastern Pennsylvania is
Miriam Burnett.
By 1983, Miriam knew that
there was something wrong with
her mother, Mildred Harris.
Mildred was no longer able to func
tion as the clerk at her church. She
had difficulty organizing and keep
ing track of the cookie sale for her
Girl Scout Troop. Mildred's fiends
from church called Miriam to tell
her that they worried about
Mildred's driving ability. Suddenly
one day, her employers suggest to
her that she retire that day. Miriam
decided it was time to take her 72-
year old mother to the doctor. Like
one out of every 10 persons over the
age of 65, Mildred Harris has
Alzheimer's disease.
For ten years, Miriam and her
family were the primary caregivers
for Mildred. They faced some diffi
cult problems. Mildred was often
frustrated by her inability to
remember things, by her confirsion.
She often lashed out at her husband
and began to beat him. Her hus
band was also elderly and frail and
could not handle these bouts of frus
tration alone. Often Miriam had to
travel at a moment's notice from
her home in West Philadelphia to
her mother's house in North
Philadelphia to help calm her moth
er down. The disease progressed so
quickly that for two years Miriam
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was living with her mother while
trying to maintain her own house
hold as well.
But Mildred and Miriam were
not alone during this time. Miriam
notes that she contacted the
Alzheimer's Association of
Southeastern Pennsylvania less
than a year after her mother's diag
nosis.
"After calling the Alzheimer's
Association back in 1984,1 became
aware of all the resources available
to families caring for an Alzheimer's
patient, particularly respite and
day care. Those are the types of
things that many folks do not real
ize are available," Miriam notes.
The Alzheimer's Association of
Southeastern Pennsylvania and
Miriam began a partnership back
in 1984 that is still going strong to
this day.
As Mildred progressed through
the stages of Alzheimer's, more help
was needed to insure her safely and
comfort. For Miriam this meant uti
lizing respite care, day care and in
home care for her mother. She
admits that she was very hesitant
in making the decision to let others
care for her mother, but relied on
the Alzheimer's Association of
Southern Pennsylvania to help her
through this difficult time.
"I was very concerned, because I
wouldn't know what was happen
ing while I was not with my moth
er. I wanted to insure that the care
givers were living up to my stan
dards of care. The Alzheimer's
Association helped me get in touch
with veiy qualified people," Miriam
said. Miriam continued to care for
her mother at home until 1993,
when Mildred entered an
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Alzheimer's facility full-time.
With this step came more wor
ries than Miriam had counted on.
"Having my mother in a facility did
not relieve the stress as much,
because I still had serious concerns,
but little control over my mother's
care."
She enlisted the help of the
Alzheimer's Association of
Southeastern Pennsylvania sup
port group she had been a part of for
so long to help her vent her fears
and frustrations. After a few years,
Miriam became the co-fadliator of
her support group. And her work
with the Alzheimer's Association of
Southeastern Pennsylvania, the
people who helped her when she
needed it most, did not end there.
Since she began calling the
Alzheimer's Association of
Southeastern Pennsylvania for help
and information, Miriam has
worked on the chapter's Helpline,
its minority outreach program, and
also has sat on the board of direc
tors and acted as president of the
chapter. She notes that she has
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seen a lot of changes in the organi
zation, mostly in regards to the
growth of the chapter. "But the
Alzheimer's Association of
Southeastern Pennsylvania is still
dedicated to bringing help and hope
to area families coping with
Alzheimer's, just as it was back in
1984 when I first called."
Miriam counted on the
Alzheimer's Association of
Southeastern Pennsylvania to help
her through a potentially devesting
time for her and her family. The
Alzheimer's Association of
Southeastern Pennsylvania real
izes the huge impact Alzheimer's
has not only on the patients, but
their families and caregivers as
well. If you would like more infor
mation about Alzheimer's
Awareness Month, The Alzheimer's
Association of Southeastern
Pennsylvania's programs, including
the Helpline, caregiver Education
programs, Safe Return program, or
the Support Group network, call
the chapter office at (215) 925-3220
or (800) 559-0404.
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