The Struggle
Everybody knows Alzheimer’s is about forgetting. But only some people realize that Alzheimer’s is also about learning. It seems contradictory: Isn’t forgetting the opposite of learning? But it is true. There are two ways you can look at it. On the one hand, for the care giver Alzheimer’s is about learning–learning how to take care of the person with Alzheimer’s. On the other hand, for the person with Alzheimer’s is about learning how to deal with forgetting. How difficult the trip of Alzheimer’s is depends a lot on how well both the caregiver, and the suffer, learn to deal with the forgetting.
For the person with Alzheimer’s the learning how to deal with forgetting begins long before any outsider is aware of it. There are subtle–perhaps even unconscious at first–habits developed to cope with the first signs of forgetting. Then it grows worse, and becomes obvious–the Alzheimer’s victim stops old habits or changing his daily routine because something he used to do he can no longer remember to do. It is easily for the observer to simply think the person “forgot” and no longer remember that they used to do the particular activity. But in my experience caring for Grandpa how to do something is forgotten long before the memory that it was done is lost. The person who is learning well how to deal with their Alzheimer’s stops an activity because they realize they cannot do it. The person who is not learning how to deal with their Alzheimer’s as well will keep trying and trying–and always ending up in a disaster.
It is hard to learn how to deal with Alzheimer’s. It is hard for the care giver. But I have always found–in my times of frustration–that it is good to remember that learning how to deal with Alzheimer’s is even harder for the victim. I, at least, still have all of my mental facilities. Grandpa is in the un-enviable situation of trying to use his increasingly broken mental facilities to figure out how to deal with his broken mental facilities. Getting through everyday life is mentally exhausting. He looks it, too, when I put him to bed. He lays there, limp, sometimes nearly asleep as soon as his head hits the pillow. It is another day survived. Another day in the battle of learning how to forget.
Early on, Grandpa was more articulate in his attempts to “learn” how to deal with his forgetting. When he first began to have trouble making it to the bathroom during the night he let it be known that he need a “can” beside his bed so that he could use it when he couldn’t reach the bathroom. That was Grandpa thinking about the problem as best he could, and trying to come up with a solution. The problem with the solution was that in his muddle in the middle of the night making sense of the “can” or “commode” was generally no more successful that reaching the bathroom. Another solution Grandpa came up with was to stop drinking as much as possible, because, as he said, “It just goes right through me and I piss it out.” There was a certain logic to the solution, but of course it would have been dangerous to his health if he had been able to follow through with his vows. However, his natural thirst and great love for coffee meant his determination to solve his bathroom problems this way never lasted very long.
Other learning I had to help Grandpa through. It was a joint effort–I saw the direction things needed to go, and I had to coach Grandpa, and he had to accept my lead. This is where care giving often hits its worst straights. The care giver–in full control of their senses–realizes where things need to go and simply tries to impose the new reality on the patient. Friction (to put it mildly) is the result. The ideal solution is for the care giver to coach the patient (both verbally and physically) down the desired path, taking it slowly as the patient slowly learns the new routine. A patient that is more willing (or able) to learn to deal with their own forgetting will make this process much, much easier.
One example of this was Grandpa’s dentures. His nightly routine was to take out his teeth and wash them before putting them in water to soak for the night. As Grandpa’s condition deteriorated this routine would more and more often end up way off track and getting Grandpa to bed was becoming an increasing project. I realized that it was time to cut Grandpa cleaning his teeth out of the schedule, but Grandpa was very concerned about his teeth–he was always afraid someone might break them so he wasn’t willing to simply suddenly give up the care of his dentures. So I started by simply helping him at the sink. It was a natural place to start. Eventually I segued to bringing him to the bedroom without doing the teeth routine. At this point his memory was failing enough that he often forgot, until he was in bed, that he needed to do anything. Once he was in bed and realized he needed to take care of his teeth, I would say, “You just wait here. I’ll bring you the jar.” Then I would bring the container to him, and he would put his teeth in. This made him feel secure that they weren’t going to get “lost” or “broken.” Then I would promise to wash them for him, and we thus avoided a long drawn out “disaster” with Grandpa at the sink. We are now at the point where Grandpa trusts me with his teeth. When I set him down on his bed for the night I simply hold out my hand and say, “Teeth” and he spits them out for me. At least, when he remembers how to spit them out. Sometimes I have to go fishing for him. The point is, Grandpa didn’t simply “forget” how to take care of his teeth. It was a process of forgetting, but also of learning how to let someone else do it. We can become so fixated on the fact that the Alzheimer’s victim is “forgetting” that we fail to help them through the steps of learning how to deal with that forgetting.
Sometimes the learning is not precisely acceptance, but just resignation. You will hear stories (or perhaps have experienced yourself) the nightmare of trying to deal with the bathing or toilet needs of an Alzheimer’s victim who is absolutely recalcitrant. Sometimes this is the result of a care giver who is not sensitive to how the situation needs to be handled, but other times the Alzheimer’s patient can be completely incapable, but also completely unwilling to learn to deal with that new reality. They simply angrily, and sometimes violently, cling to the past.
In this case I have been very blessed. While Grandpa was (and as much as he can, still is) very modest, his resignation to his inability to bath himself and use the toilet has been, all things consider, fairly smooth. We have progressed in steps through me helping him with his bathing, and his toilet needs. He has never liked this, but has gone along without too much complaint. It’s not just that he has “forgotten” how it used to be–it is that some part of him has come to realize this is how it has to be. Sometimes he still complains that it “isn’t right” that he wets himself, or poops himself, but most of the time he just lets me clean him up and we both take it as the way it has to be.
The great struggle now is Grandpa learning how to deal with the fact that he cannot feed himself. Of all the things he has had to learn, this is perhaps the hardest, and there is little I can do to help except be there to help. With all of his being Grandpa wants to feed himself, but the cold facts of reality is that he is growing increasingly incapable. It is coming to the point where either I feed him, or he doesn’t eat.
It is painful to watch him struggle with this. It is painful to watch him struggle to figure out what contortions he might go through to get the spoon in his mouth. And it is painful to watch him fail in growing frustration and desperation as every spoonful fails to make it to his mouth–or reaches there empty. He curses and pounds at the table because he can no longer feed himself but he hasn’t yet learn to accept this forgetting. But we are getting there, more and more. He let’s me feed him more often, and more instinctively opens his mouth when I lift up the spoon and say, “Here, have a bite.” But it is hard to learn that you have forgotten everything.
The Little Things
And then, in the midst of all of the forgetting, and learning to forget, sometimes little things, new things, are simply learned. They are unimportant things, but they are reminders that Grandpa is still interacting with the world. One example is Life Cereal. Grandpa prefers his cereal sweetened, but doesn’t like the super-sweet cereals like Co-Co Puffs, or whatever. This meant that before I came his selection of cold cereal was basically bran flakes, corn flakes, cheerios, or Rice Crispies–all sprinkled with sugar. However, I realized that he got rather tired of his own selection (and also became unable to eat brain flakes) so I introduced him to Life Cereal. It is somewhat sweet, which meant I didn’t need to add any sugar, and was about the right consistency for Grandpa to eat. But offering him the cereal was a bit of a trick. Conversation went something like this:
Me: “Grandpa, would you like to try a new kind of cereal?”
Grandpa: “What is that?”
Me: “Life Cereal”
Grandpa: [blank look]
To someone with a failing memory the name “Life Cereal” is incomprehensible. Asking them if they would like some “Life Cereal” is like asking them if they’d like some “Warm Black” to eat. The juxtaposition of words has no meaning. I avoided this problem by simply giving it to him to try, and calling it the “other cereal” or “the square stuff.” Given Grandpa’s failing mind I doubted the new cereal would even stick in his mind, but he surprised me. I continued to give it to him intermittently, and then one night when I asked him what he would like for his bed night snack he said, “Oh, let’s have some of that Life Cereal.” Since I used that title with him rarely (if more than once or twice) this meant that (a) First Grandpa had read the title of the cereal on the box (b) recognized that he was eating that cereal (c) recalled it at a later date. Learning a new type of cereal is a pretty good feat for someone who is forgetting how to walk and talk.
Another small example is Grandpa learning to tuck his elbows in when I take his wheelchair through a doorway. When I first started taking Grandpa around the house in the wheelchair he would leave his arms jutting out over the side. If I was paying attention I would remember to tuck his arms in when we went through a doorway, but I forgot often enough that Grandpa would bang his elbows on the door frame. After several bangings I noticed that when we started wheeling down the hall toward the bedroom Grandpa would quickly tuck his elbows in. He had learned that if he left them out they would get banged. Of course he doesn’t always remember, but it is something he learned.