A Wife Learns to See With Alzheimer's Eyes
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.
Q. What was your life like when Alzheimer's disease first became part of your vocabulary?
A. 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.''
Q. How did you respond to your husband's grim prognosis and the suggestion that he be put in an institution?
A. 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.
Q. Why did you call your system habilitation?
A. 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 China.
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.
Q. You are a big believer in the idea that caregivers need to redesign their homes to accommodate the needs of Alzheimer's patients. Why?
A. 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.
Q. How did habilitation become your profession?
A. Charles died after four years. Afterward, I went to live with my parents in Wellesley. I took a job as a nurse's aide at a nursing home there. Caregiving was the one thing I knew how to do. Without support from outside authorities, the nursing home began incorporating habilitative methods with dementia patients.
Then, I started going to meetings of the Alzheimer's Association in Boston, which was really getting seriously started then, and sharing my ideas. The whole thing grew. I began consulting. It's what I do today. Right now, I am working with an architect and an interior designer on how to design houses that people with Alzheimer's can successfully live in.
Q. How did you meet your second husband, Edward Coste?
A. 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.''
Source: New York Times