Chuck Josephson, right, is the sole caregiver to his wife, Joan, who has Alzheimer’s disease. Chuck spends each day with Joan, who is unable to carry on a conversation. Outings to friends’ homes give Chuck an opportunity to socialize.

 Mamta Popat / Arizona Daily Star

Part two of 12.

The meanings of words and phrases such as β€œI don’t want to,” β€œWhy?” and β€œNo” have changed dramatically as Joan’s disease has progressed. (Actually, meanings continue to change!) In the early stages, words meant just what they said, but as time passed, I’ve needed some imagination to figure out what my wife probably intends.

β€œI don’t want to” may mean exactly the opposite. One has to be ready to interpret. For example, β€œWould you change into your pajamas and get ready for bed?” generates the β€œI don’t want to” comment. Does this mean she doesn’t want to change clothes? No, she likes getting into her pajamas. What she is saying is either, β€œI don’t know how to do that” or β€œI’m actually pretty comfortable as I am.”

β€œNo” does not represent a negative, but is often just an automatic response to a yes or no question. β€œWould you like to go along to the store?” I ask. β€œNO,” Joan says. Yet, experience shows she wants to do just that. Why does she say no, then? My guess is that any kind of change requires an effort, and making any effort is hard to cope with. It is important to avoid yes or no questions as much as possible. Not β€œWould you like to come along?” but rather, β€œLet’s go!”

An unfortunate and, frankly, disturbing instance of this occurred when I was sending her to a respected adult day-care facility for a half day or a full day. They had activities for the clients β€” games and such. The ones in charge always reported, when I picked Joan up, that she behaved just fine.

Later, when I suggested that she might even participate in more active things, bus trips and so forth, they said her failure to get involved precluded them from wanting her to do more. I was incensed, for this meant she actually was not participating in the day care I was paying for. I pointed out that she loves to be around others, and asked if they believed her when she said β€œno” or β€œI don’t want to.” Sure enough. I told them to quit asking for a yes or no. They did, and the very next time she brought home some craft-like things she had done with the group. I was amazed at the ignorance of the employees.

β€œWhy?” is another response in need of interpretation. I have been at β€œcaregiver” meetings at which the facilitators made a point of telling us to be patient in explaining and answering β€œwhy.” Maybe in the early stages that is all right, but as time goes on, it’s wrong, even counterproductive. The disease affects Joan’s ability to understand even simple explanations. Going into any detail is simply confusing, even frightening to her β€” just as though she were being addressed in a foreign language.

An example makes the point. She fell at an auto-repair shop (not because of her condition) and knocked out four front teeth. Dentures are too much for her to handle, so implants were required. I told the dentist that it would almost certainly be necessary to have Joan anesthetized while the implant bases were being installed.

When the time came, he said the anesthetist was late and we’d have to wait a couple of hours. He had done work on Joan before, and felt she might get along with local pain deadening. Impatient, I said, β€œLet’s try.”

The pain-deadening shots went fine, and he started the surgical work. Joan started flinching and was getting disturbed. The dentist explained, as he would to anyone, what he was doing and why it was necessary.

I told him, β€œDon’t do that! It will just confuse her and make her more uncomfortable. Just tell her what you want her to do β€” open wider, bite down, and so on β€” and when she does what you want, compliment her and say she’s doing fine.”

Twenty-five minutes later the implants were installed, she was fine, and the dentist said, β€œThat went so easy. I never would have thought of talking to her that way; I’m so glad you were here to tell me.”

It is no longer appropriate to accept every word at face value, but it is terribly important to realize that Joan is saying something! What she means may require clever interpretation and judgment. Her remarks often mean β€œI am getting confused” and little more.

Tomorrow: Staying social.

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