Living With Alzheimer's and Care for Alzheimer's Disease
Last Updated: April 2, 2013
Sisters Ethel P. and Matty B. have been the closest of friends
for over eighty years. So no one was surprised when, four years
ago, they decided to move together from New York City into an
independent living community in Westchester County, New York.
They quickly made friends with two other new arrivals, and the
foursome began enjoying dinner together virtually every night.
Recently, however, Matty has been finding it hard to muster the
energy to dress herself, put on makeup, and walk to the dining
"I try to give her a pep talk sometimes," Ethel says, "but she's
my older sister so she doesn't really listen to me, and the last
thing I want to be is a nag."
Matty's apathy is just one symptom of mild or A1 stage
Alzheimer's disease. Her other symptoms, including limited
concentration and impaired planning, are also typical in someone
living with Alzheimer's.
"Matty is such a perfectionist, and so sharp," Ethel recalls.
"She used to edit the newsletter for The National Council for
Jewish Women, a really big deal. In fact, Matty was honored just
three years ago at a New York City gala for her fifty years of
service! Now she won't work on our community newsletter because
she's positive she won't be satisfied with the end product."
Ethel sees changes in Matty's living patterns almost daily. A
generous and fastidious volunteer and benefactor to numerous
charities, Matty is overwhelmed by the deluge of mail asking her
for donations. The pile builds on her desk and, though she fully
intends to sort through the giving pleas and make educated
decisions, as she has always done, the volume stifles her
Matty remains very proud to live independently. Ethel checks in
each morning and, if everything seems okay, often won't communicate
with her sister again until they meet with their friends for
"All four of us share similar politics and intellectual pursuits
so the dinner conversation becomes quite lively!" laughs Ethel.
"Matty is usually in the thick of it, though she may ask the same
question or make the same point numerous times during the
Alzheimer's disease usually begins gradually, affecting 20% of
people over 80. (Matty is 88, Ethel 84.) The number increases to
50% by the time people reach 90 years old. The
Alzheimer's symptoms, primarily caused by the progressive
destruction of nerve cells in the brain, begin to increase rapidly
as well. First, short term memory fades, then planning and judgment
become impaired, followed by personality changes, and finally,
difficulties speaking and walking.
For primary caregivers like Ethel, the changes to someone living
with Alzheimer's can be dramatic.
"Matty loves chamber music so I bought us a subscription to a
concert series," Ethel says. "By the time the concert series
started a couple of months later, she couldn't muster the energy to
attend the evening performances. It saddens me to see her so tired
that she misses out on activities she loves.
"Still, I wouldn't have it any other way at this point. My
sister and I are very close, most of our children live far away, we
have always had each other and we still do."
Ethel's role as her sister's caregiver remains consistent. She
always accompanies Matty to her doctor's appointments for fear that
Matty may miss an important piece of information, such as a recent
change in her prescription. Ethel also insists that the doctor call
her as well as her sister when they need or deliver
"I insist that Matty schedule the courtesy van to take her to
the doctor. That way she remembers she has the appointment,"
Physical activity is considered an important element to slowing
the onset of the disease. Staying active can be challenging, as
fatigue from consistent frustrations of memory loss as well as
general lack of acuity often lead to depressive symptoms. It is
important, therefore, that the caregiver be active herself, both
physically and intellectually. And to exercise Matty's brain, Ethel
asks her to preview each day's schedule, keeping her mind active.
This type of mental exercise is commonly thought to offer one of
the best retardants to the onset of Alzheimer's disease.
In addition, patients with early stage dementia are often aware
of their short-term
memory loss, contributing to feelings of inadequacy and
frustration, which also contribute to depressive symptoms. This can
prove especially challenging for both those living with Alzheimer's
and those who care for Alzheimer's patients.
Like many independent living communities, Ethel and Matty's
residence offers a full itinerary of activities. There are buses
into Broadway, nightly movies, weekend dances, trips to galleries,
generally all the activities we might associate with college campus
life, except perhaps the nightly bridge club.
Matty participates in activities when she feels up to it, but
only if they occur during the day. She is too exhausted most
evenings. It helps that she has made close friends here. Each
friend is aware of Matty's situation, so they also try to keep her
active and aware whenever possible, and they are always patient
with her repeated questions and comments.
As we age, the obstacles to an active life increase. Aches and
pains provide ample excuse to skip the walk, and impaired
short-term memory can make the reading of that novel seem like a
waste of time. Yet these are exactly the kinds of activities that
help slow dementia. And, if we remove the communicative activities
of taking a walk or discussing a mystery from our daily lives, we
are in effect also removing ourselves from our social environment,
which can further accelerate the dementia.
"Matty decided not to attend dinner with my son and his family
when they visited two weeks ago," Ethel says. "She just wasn't up
for it. But I am sure being around her nephew and grandnephews
would have felt really good to her and been very positive for
"She remains a proud woman-it isn't about throwing on a robe for
her. She wants to look pretty, to wear a flattering dress and apply
her makeup. It takes a lot to prepare oneself even when you are
feeling fine, so when you're always tired getting ready can seem
like too much. That's what happened when my son's family was
Ethel makes it clear that she wouldn't choose any other task
than caring for her sister as she does: "My sister is a wonderful
person who has helped me through plenty of hard times. She is never
too demanding on me and always appreciative that I am looking out
for her. And she remains great company."
For Ethel, like many other caregivers during the A1 stage of
dementia, being her sister's primary caregiver may change suddenly.
It is often difficult even for the most loving family members to
cope with the care for Alzheimer's disease and other forms of dementia.
Mood swings increase, as do physical challenges including
incontinence and impaired mobility. Independent living is
eventually replaced by assisted living.
Presently Ethel and her nephew, who lives closest to the
sisters, provide a comprehensive team. Matty's son took over his
mother's finances two years ago after Matty's early symptoms became
consistent. He regularly attacks the pile of envelopes on Matty's
desk, "though he is hardly as judicious as his mother," notes
Ethel. He also has all bills directed to his house, alleviating a
major cause of anxiety even among those who can easily pay.
And Ethel is aware of her own needs. Since they live in separate
apartments, Ethel attends evening activities without "leaving" her
sister behind. She also rarely misses dinners with her friends,
though she will dine in with Matty in one of their apartments as
"I complete the shopping for both of us," Ethel says, "but my
sister still washes her own clothes and prepares her breakfast and
lunch. It is just as important to her, as it is to me, that she
maintains as much independence as possible. After all, this is
called independent living for a reason."
Thus far, Matty's speech and mobility are not affected by the
disease. One complication has occurred, however-her reaction to the
medicines designed to slow the progression of her symptoms. She has
said that when on the medications she feels as if her head is
floating above her body, a particularly disorienting feeling for
someone who has lead such an intellectually active life.
Three years after showing the first signs of dementia, Matty's
medication regimen remains unsettled. Recently her doctor removed
one prescription in hopes that Matty would regain some of her
energy. Because these drugs only slow the progression of symptoms
but cannot cure the dementia, frequent changes in medication are
not uncommon as doctors try to tailor the course of care for
Alzheimer's disease to each individual patient's needs.
Ethel believes that she and her sister have plenty more to look
forward to as the best friends experience their ninth decade
together. She knows that Matty will have other opportunities to
visit with her grandchildren and children. The family is aware of
Matty's condition, and making more of an effort to visit with
On days when no grandchildren visit however, Matty takes
tremendous comfort in knowing that her kid sister is always close
by, ready to discuss the latest Broadway craze or the upcoming
gubernatorial election, even if Ethel has to repeat the candidates'
names a few extra times.
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