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Joanne Koenig Coste
concedes that she is a bit of a Pollyanna. "It helps with what I
do," said Ms. Coste, a consultant for institutions that treat
patients with dementia and the author of "Learning to Speak
Alzheimer's." Thirty years ago, when Ms.
Coste was pregnant with her fourth child, her husband, Charles Koenig,
then 44, began showing the symptoms of Alzheimer's disease. For four
years, until he died in 1976, Ms. Coste devoted herself full time to his
care. She had no medical
experience. But as his illness progressed, Ms. Coste found herself
inventing her own methods, a system she now calls habilitation. In that
approach, patients and those who care for them abandon any dreams of a
cure, instead devoting themselves to making life as comfortable and
pleasant as possible. Ms. Coste encourages
people who take care of Alzheimer's patients to enter their worlds and, to
some degree, to join the patients there. Homes, apartments, furnishings
and even menus are juggled and rearranged to meet special needs, said Ms.
Coste, who is 64 and has remarried. Habilitation has won
praise from health care professionals. The founding director of the
National Institute of Aging, Dr. Robert N. Butler, wrote the introduction
to Ms. Coste's book, and she estimates that at least 100 nursing homes and
assisted-living centers have adopted her methods. What was your life like when Alzheimer's disease first became part of
your vocabulary? I was 32 years old when
the first signs hit us. I was a full-time homemaker. My husband was a
writer. Originally, he'd been diagnosed with depression, but that didn't
seem right to me. Charles, who was such a
fastidious dresser, suddenly couldn't match up his clothes anymore. And he
was losing a sense of memory and reality. Once, when I was seven months
pregnant, a friend asked how I was feeling. I answered, "Pretty good,
considering the pregnancy." Charles said, "Why
didn't you tell me you were pregnant?" This wasn't depression! Then Charles had a massive
stroke. He'd been having these little strokes all along that were part of
the disease. But that hadn't been noticed. Afterward, the doctors finally
used the word dementia. They said it was neurological and progressive:
"Just go home and live this out. Either that or institutionalize
him." How did you respond to your husband's grim prognosis and the suggestion
that he be put in an institution? I wasn't going to
institutionalize him. I realized that Charles was no longer the person I'd
married. But when we'd married, I didn't promise, "I'll stay with you
just so long as you can recognize me." I said "forever." So I took Charles home.
And I tried to be with him, wherever he was. People talked about how sad
the situation was. I said: "This is a new person. Come on over and
get to know him." Nobody wanted to. Charles wasn't easy to care for.
There was no Alzheimer's Association then, with group meetings for
families of caregivers. So I was always inventing the wheel with him. A big moment came for me
one day when I saw him scraping the Teflon off my brand new frying pan. He
sat down with that pan for a couple of hours and scrapped every last bit
of Teflon off. When he was done, he held it up in triumph and said the
only word he could speak — "On!" This was a moment of
choice. I saw the feeling of accomplishment he was expressing and said,
"Thank you for scraping all the Teflon off the pan." In that
moment, I understood how to go with his situation. Support him in his new
state of mind, avoid conflict, praise him. Why did you call your system habilitation? Because it's not about
someone getting rehabilitated. Habilitation is about living in the
patient's world, making the patient's environment safe and nonthreatening,
focusing on his or her remaining skills and enriching the patient's life
as much as you can. Let me give you an example
of how it works. Charles once pruned rosebushes beautifully. He couldn't
do that anymore. But he could dig a hole in the front yard. I let him dig
holes all the way to The alternative was
disaster. It would have been anger, resentment, instead of pleasantries.
When he did something wrong, I'd laugh and make sure I had eye contact
while I did it. That would just start gales of laughter. He laughed
because I was. You are a big believer in the idea that caregivers need to redesign
their homes to accommodate the needs of Alzheimer's patients. Why? Because really small
changes can make things much easier. You have to put yourself in the
patient's place and figure out what they need. When Charles first started
to get incontinent, it was at the same time I was potty training Jason,
and I kept thinking, if only I can get Jason trained, then there'll only
be one set of diapers. Well, to do that, I had
this idea of painting the wall behind the toilet bright red, leaving the
door open and hoping that Jason might respond to that. Well, Charles saw
it and started to use the toilet again. His problem had been one of
perception, I realized. He didn't see the toilet anymore, and that's why
he'd become incontinent. But the red paint drew his attention. Well,
physicians now know that nobody with Alzheimer's needs to be incontinent.
You have to make things visible on their terms. There are a lot of other
areas where this also is true. For instance, if a patient has trouble
eating with utensils and is making a mess all over the place, you give
them finger foods. Lighting is another thing one can fix. My husband's
behavior tended to change when the sun went down. This is common with
Alzheimer's patients. So I bought lots of lights and kept turning them up.
I closed the curtains, so he couldn't see outside. That way, the sunlight
was inside rather than outside. That made a difference. How did habilitation become your profession? Charles died after four
years. Afterward, I went to live with my parents in Then, I started going to
meetings of the Alzheimer's Association in How did you meet your second husband, Edward Coste? On a blind date 15 years
ago. My hairdresser thought we'd be a good match. I didn't want to go on
any date, but my son Jason was about to leave for college, and he said:
"You're not going to have me to take care of you. Let's find someone
to take care of you." It was a lighthearted
thing. Well, my hairdresser was right. It was love at first sight. Teddy has diabetes. I sometimes tell him: "You take your insulin. If anything happens to you, I am going to be angry. I'm not 32 anymore, and I'm not doing this a second time." Copyright © 2004
Global Action on Aging |
