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Sabina,
the caregiver:
I don't know how to manage that man.
He's really very difficult. I came to be a caregiver from the
Philippines. My sister and my aunt are also caregivers and they
found me this position. I thought I'd have to help an old man
walk, and go to the toilet; maybe feed him, and dress him, but
this man is not disabled physically. He's disabled mentally. That's
so much more difficult.
He accuses me all day long of trying
to harm him. He thinks I'm stealing his belongings. If he misplaces
his toothbrush or his socks, he says I stole them. It's not nice
to be accused all the time of stealing. In the Philippines we're
very moral people.
He also runs out of the house and
I have to quickly run after him, because he can get lost. He acts
queerly. He talks to the walls and the stove -- as if he's seeing
spirits. It's spooky.
I feel sorry for his wife. She's
really falling apart. She tells me he's been deteriorating like
this for the past year. Sometimes she's so distressed she cries
her heart out. I think it's good I'm there for her sake. Their
children are very nice; they sometimes give me a present, or some
extra money. I know they feel guilty that they're not there to
look after their father, so they pay me extra for doing their
job.
Beside the children, and sometimes
the doctor, nobody ever comes into that house. It's not like in
the Philippines where we have cousins and aunts and uncles and
neighbors all there to help out. It's really a very quiet and
sad household. If a salesman or mailman comes to the door, the
misses won't let her husband talk to them. She doesn't want anyone
to see him. She's ashamed of him and I think he feels that. He
feels squashed.
Sometimes Mr. David mixes up between
day and night, and then I don't get any sleep at all. The best
is when he goes to the daycare center. I accompany him. It's wonderful
there. All the people are like Mr. David -- they all forget. But
there nobody cares if your mind is clear or mixed up. They like
everyone just as they are, and Mr. David just blossoms under their
friendliness.
The group leaders talk very nicely
to the demented people. They give them activities to do at which
they can succeed. Mr. David has a good voice and remembers a lot
of songs, so they're always calling on him to sing for them. That
makes him proud. If someone gets upset they don't start to argue
with him; they try to take his mind off of what's disturbing them.
I've learned a lot about dealing with people with dementia. There
are other Filipino helpers there, and we have a great time together
while the old people are dancing or doing exercises.
Now when Mr. David can't go to the
center I sometimes do those dances or exercises with him at home.
His wife is very impressed. I try to talk to him like they do
at the center too. I don't get as upset anymore when he thinks
I've taken things from him, or when he gets agitated. I simply
take him to the window to watch the scene outside, or start to
sing with him.
But there are some problems with
Mr.
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| They're always asking
me to do things or not to do things -- and I'm always disappointing
them. |
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David that I haven't solved and I
don't know what to do if he talks back to the television set or
to himself in the mirror. The worst is when he turns violent and
starts to hit me. I know he's not responsible but that's too hard
to take. I really thought I'd leave him the first time he did
that, but I feel sorry for him and for his wife, and I know he
really doesn't know what he's doing. I've got another l0 months
before I take a vacation to the Philippines to see my family.
I'll try very hard to hold out until then. Meanwhile I'm learning
a lot.
Janet,
the daycare center director:
One can learn a lot from David, who
is one of our most problematic members. He's quite disoriented
and often agitated. I believe his wife is having a very hard time
managing him at home, even though they have a live-in helper.
Despite his advanced stage of Alzheimer's and the fact that many
of his mental functions are deteriorated, he reacts very positively
to stimuli like music and physical activity.
When David first started coming to
the center he was very reluctant to join in any activity and demanded
to be taken home. For a while I really didn't think we could absorb
him in the group. We gave him a lot of individual attention and
a feeling that he was wanted. We referred to him by name often,
asking his opinion and requesting his participation in group discussions.
Gradually we gained his confidence, and he began to flower in
the climate of acceptance that we maintain here.
When we learned that he had a talent
for singing, and remembered many songs, we found a field in which
he could distinguish himself and this enabled him to make a place
for himself in the group. His self-confidence and self-image have
improved wonderfully in the past few weeks and he is much easier
to work with as a result.
There are still periods of irritation
and disquiet, when he wanders around the room or gets aggressive.
We've learned to tune into his inner voice, and we try to find
out what's bothering him. Sometimes he simply needs to go to the
toilet; sometimes he's thirsty. Once he was anxious that he couldn't
find his coat, and a few times when he'd had tension at home with
his wife, he needed simply to talk to her on the telephone to
relax. It's not easy finding the right key for agitation in members
like David, but from experience we've learned some tricks of the
trade.
Our approach is a team approach,
and all members of the staff think together how to involve each
member more, how to give each one special attention and the opportunity
to shine in a group setting. Most of all, we put our heads together
to find the best programs for our members and at monthly meetings
with our supervisor and medical consultant, we try to find the
best approach to met each one's needs.
At one of these meetings we discussed
David's increasing paranoia. We've heard from the wife and the
caregiver that he often accuses them of taking his things or of
conspiring against him. In the center he's sometimes attacked
other members because he thought they were harming him. Our medical
consultant will try prescribing a mild drug for a short trial
period, and our social worker will meet with the family (the children
and the wife) to try to focus on which issues illicit the outbursts
of paranoia and how best to handle them.
I feel one of the main sources of
David's restlessness is his family situation. Therefore one of
our aims in the coming months is to work more closely with his
wife and children, helping them understand the nature of the illness
and its manifestations and helping her, especially, to roll with
the tide rather than fighting it. If the children are involved
more actively, that will also take some of the burden off of his
wife, and she could possibly benefit from one of our support groups.
There are also ways of adapting the physical home environment
to be more user-friendly for David.
It's certainly not easy coping with
a demented relative in the home and we appreciate the stress that
his wife is under. Because we share the common goal of making
life better for David, I think she'll be more prepared to hear
our views and adopt some of our methods. Already I've noticed
that the caregiver has started to model us, the way we talk to
our members or allow them more freedom, in a supervised framework,
and that's very good. The coordinated efforts between the center's
staff and the family will assure a more unified and effective
approach to David and will hopefully have a positive impact on
this lovely man with an unfortunate disease.
Bernard,
the son:
It took me a long time to get used
to the idea that dad is suffering from a disease. For months,
maybe even a year, I pretended that he was just a bit under the
weather, or even that he didn't have enough to do and was fishing
for attention. Once, I'm ashamed now to admit it, I even accused
him of putting on an act, trying to get mom's goat. Mom was taking
the changes in him very hard. Every time I'd go there she'd cry
and relate a whole series of "What He's Done Now."
Since I couldn't do anything to relieve
the situation, I found myself trying to get out of it. I'd stay
away for whatever excuse came along; I really didn't like being
in that home anymore. Mother must have caught on and she became
more reserved when I came over. My brother, Aaron, called me a
few times to "discuss the matter." He complained that
I wasn't doing my share and that mother needed us now. It's very
well for him to talk -- he's self employed and he has only two
children, both grown up. I have a boss to keep happy, and that's
very hard, I can tell you; and two of our children are still in
high school, with all the problems that teen-agers bring home
nowadays.
We had a real fight about it. It's
not pleasant to remember. He said we should try and get over there
more often, take turns spending the weekends with dad, stimulate
him, take the burden off of mom
. I told him to get off my
back; I'm already doing more than I can. I feel so frustrated
and pulled by different responsibilities as it is. My wife isn't
much help either. She's complaining just the opposite: that I
spend too much time with my parents, and worry more about their
welfare than hers and the kids'.
But when I feel sorry for myself,
I think of poor dad, and then I know I have nothing to complain
about. He's really off his walker -- he forgets everything. My
dad! Why he was such a champion checkers player. It's weird. He's
forgotten what to do in the game. He used to teach me tricks.
He was such a wonderful father. It's so painful to see him like
this, sitting passively, even fearful, trying to keep out of mom's
way. If I were a little boy again, I'd cry. But since I can't
do that, I fight with my brother and yell at my kids, and I'm
a mess.
After Aaron and I had that fight,
we got together and decided that things can't continue like this.
We investigated and hired a Filipino caregiver. It's costing us
an arm and a leg -- the parents never put away money for things
like that, but I think it's money well spent. Since the helper
has come to live with them, mom gets more sleep at night and she
can share the burden with someone beside us. Mind you when my
wife found out the price, she had a fit. What can I do? It's lucky
that her parents needed her to help them move recently and I could
play the injured spouse for a change.
I wonder if we should consider finding
a place for dad as well. He's become so dependent and unreliable
lately. Maybe the best solution would be putting him in a nursing
home. I think being under the care of professional people would
be a comfort for mom and for us. But placement in a good home
is even more expensive than paying for the live-in caregiver,
and besides, I think dad would be even more confused outside his
house, in a different setting. Aaron asked a doctor and that's
what he told him. It's very hard trying to decide what's best
for your own parents. I'm not used to making decisions for them
-- they always made decisions for us.
I have another worry, when I look
at my father these days. I worry that maybe dementia is hereditary
and just like I'm going bald the way he is, maybe one day I'll
also forget my wife's name and where I live. What a horrible thought!
I'd rather die than be in that state, at least that's what I think
right now. Mind you, he does have some quality of life. I know
he likes seeing me and the grandchildren, even if he doesn't know
our names. And at the daycare center he seems to shine under the
care there. He likes their parties and their activities. It's
a far cry from what he used to like doing, but it's clear he's
enjoying himself.
Now that I think about it, there
are a lot of things dad still enjoys. He likes sitting out in
the sunshine and eating an ice cream cone. He seems happy when
he's singing his head off in the shower and riding in the car
with the window open. He enjoys our garden, just wandering around,
doing nothing. You know, maybe instead of comparing him all the
time to what he was and what we'd like him to still be, we should
change our expectations. If he can't change, then at least we
can.
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