Part II
Alzheimer's is an unpleasant illness both for the victim
and for those attending him. Tzivia, whose mother has
Alzheimer's, copes with the problems it poses every day,
twenty-four hours a day. Tzivia has three children and
directs a nursery in the mornings. Her mother has been living
with her for the past three years. Let's listen to
Tzivia.
When my mother was seventy, she became very absent-minded.
Sometimes, she would be unable to recall what she had done
moments ago. On other occasions, she would board the wrong
buses or forget where to get off. At that time, her behavior
was erratic, and she would be alert and active for a number
of months, and then become confused and forgetful for the
next few months.
Once, on her way to visit me, she got off the bus at the
wrong stop and began to wander down a relatively desolate
road. Fortunately, some good people noticed her disoriented
manner and asked her where she was headed. At that time, she
recalled my name and my approximate address and they were
able to locate me. That night, she slept at our house. The
following morning, I got up early and checked her room, but
she wasn't there. Frantically, I dialed her home number and,
Boruch Hashem, she answered.
When I asked her why she hadn't said goodbye, she replied
that she had been home the entire time.
After that incident, she returned to herself, and functioned
well for a number of months. But even during that period,
certain strange incidents occurred. Sometimes, she would
enter neighbors' homes without knocking and then forget to
leave. On other occasions, she would pour salt into her
coffee and sugar into her salad.
For a year and a half, we had no idea what was happening to
her. We tried to relate to her as usual, and hoped that her
strange behavior would pass. But in time, she began to
regress. I was after birth, then, and couldn't help my father
care for her. He is also elderly, but never complained about
the situation. As a result, we had no idea how he was
struggling.
Her situation worsened to the point that at times, she didn't
remember whether or not she had eaten. She also had a burning
passion for long strolls in nearby fields or parks. At a
later stage, she began to imagine that we were neglecting
her. But by then, we realized that these were symptoms of an
illness whose name we still hadn't determined.
As time progessed, Ima found it difficult to eat by herself,
and my father had to feed her. Soon, she also began to resist
being fed. My brother thought that she shouldn't be forced to
eat. But she lost so much weight as a result of these eating
strikes that she had to be hospitalized.
Realizing that my father and brother couldn't cope with her
by themselves, I invited her to live with us when she was
released from the hospital. At that point, I didn't think
that she would remain with us permanently. I only wanted to
help her regain her strength before she returned home.
Coping at Home
During the first weeks after her release, I served her
blended and mashed food because she was too weak to eat
solids. Within three weeks, she resumed her regular habits
and as a result, regained her strength.
But even after she had recovered from her depletion, she
required round-the-clock care, and still had to be fed,
dressed and supervised, lest she harm herself or others.
Since I had small children at home and ran a nursery, I
couldn't cope with so much work alone. Bituach Leumi
(National Insurance) promised to participate in the financial
aspect of her care and let us choose the type of plan we
preferred. One plan involved placing her in an old age home.
The other involved sending her to a golden-agers' club for
people with similar maladies. These clubs offered the golden-
agers half a day of recreational programs which included
lunch.
I felt that Ima needed the warm and loving care of a family.
Moreover, I recalled that when she had been healthy, she had
once said, "When I am elderly, don't throw me into an old age
home," and I couldn't betray her. As a result, I decided to
keep her in my home, without really knowing how I would cope.
My infant was half a year old then. Another child was two and
my oldest, three-and-a-half.
A neighbor who saw my mother suggested that she might have
Alzheimer's. Apparently, he knew what he was talking about,
because his father suffered from a similar syndrome which had
been diagnosed as Alzheimer's.
Although no one jumps for joy at hearing such a diagnosis,
the designation of the illness made me feel much better and
more capable of dealing with the situation.
Day by Day
Ima's daily schedule is in essence mine. It entails waking
her, dressing her, feeding her, and then bringing her to a
special club in the city where she remains until three. When
she returns home, I divide my attention between her and my
children.
Since I never know how much she ate in the club, I give her
dinner the moment she comes home. After that, I keep an eye
on her all afternoon, and in the evenings, bathe her and put
her to sleep.
On the surface, this may seem rather simple but in caring for
Alzheimer patients, every act is complex and arduous. Ima
doesn't always let me dress her, and sometimes runs away from
me in the middle of the process. And don't forget, she is an
adult, not a six-month-old squirming baby. Feeding her is
also a special project because she often forgets how to chew
and swallow, and keeps the food in her mouth. During dinner,
I plead with her to swallow her food, but she usually doesn't
react.
She also doesn't sleep the entire night and when she gets up,
she opens the faucets and slams doors, waking everyone. We
have to lock the rooms and keep the front door closed during
the day lest she wander outside and get lost. That happened a
few times in the beginning, when we weren't sufficiently
alert.
Her lack of comprehension is the most difficult problem of
all. I speak to her in her native language, Moroccan.
Sometimes she doesn't respond and at other times, she puts up
a fight and pushes me away.
Until half a year ago, she spoke a bit. But now she doesn't
say a word. Instead, she gestures to me with her hands and I
don't always understand her.
Sometimes I ask her, "Do you know who I am? I am your
daughter." She generally responds to this question with a
nod. But she doesn't recognize any of her grandchildren.
Although I talk to her a lot and tell her about family
simchas, my words have no effect on her.
There are brighter moments, however, such as when she smiles
at me, kisses me or strokes my cheek. These reactions
indicate that she is aware that I am taking care of her; she
is trying to express her gratitude. Such incidents give me
the strength to continue. But what fortifies me most of all
is the knowledge that I am constantly fulfilling mitzvas
kibbud eim -- perhaps not perfectly, but surely to the
best of my abilities.
My husband's attitude also encourages me. He always points to
the amazing siyata d'Shmaya which our family has
experienced since my mother came to live with us. He also
treats her with special respect and shares the burden of
caring for her. When he can, he helps out with the children,
enabling me to spend more time with my mother. If he is at
home during the evenings, he puts the children to bed.
My oldest daughter is still upset by the fact that I must
divide my attention between her and my mother. She is also
ashamed of her grandmother and doesn't want to bring friends
home.
I tell her that Savta was once a healthy, happy and dedicated
woman, but my daughter doesn't recall that period in my
mother's life and often asks why we don't place her in an old
age home. She asks many other questions, too. Although I try
my best to answer her, I don't always hit the mark. I am
currently seeking the help of a chareidi family
counselor regarding this problem.
Outside Help
Let's face it: we're only human and sometimes need outside
assistance. When I wasn't able to cope with my burden alone,
I asked Ezer MiZion to send someone to feed Ima in the
evenings while I gave my own children supper. In time, I
learned how to manage on my own, and would feed my children
and my mother at different times, which did not overlap.
Nonetheless, despite all my personal reprogramming, the
supper marathon in our home begins at 6:00 and ends at
9:30!
Bituach Leumi also sends me a cleaning lady once a week. Some
cleaning ladies know what is expected of them and remain on
the job for relatively long periods. Others leave after a few
weeks. Since everything is from Hashem, I also ask Him to
provide me with steady and reliable household assistance.
Caring for Ima is an integral part of my daily routine.
Everyone faces challenges and problems in life. Some have a
disabled child, others have different problems. But at the
end of the day, when I fall into bed, I know that I am
exhausted for a good reason.
I feel that my involvement in such a mitzva gives me
the strength to continue. I also know that I am not special
or outstanding and am not the only one in the world who cares
for an elderly parent. Bringing my ailing mother into my home
was the most natural and normal measure I could take, and my
trial in life perfectly suits my character and
personality.
When I am truly worn out, I take a break and don't feel
guilty at not having completed all of my household chores. "I
was busy today," I tell myself. "I enabled my husband to
study in Kollel, cared for my children and for my aged
mother. I spent a fulfilling day, laden with
mitzvos.
"Could anyone ask for more?"
To be continued with third episode
