JB: Great question. Was the support group helpful in that regard? How do you treat a nice person who is nevertheless more and more out of it?
ESR: Yes, the support group was very helpful and we made friends with whom we could socialize. Bernie and I had a very compatible, supportive and loving marriage ---lots of common interests while still maintaining our own separate interests, genuine admiration and respect for each other, agreement on child rearing and great pride in family, collaboration on family and professional projects, enjoyment of travel. We had times of needing to work things out, but we had those tools in hand, so were able to manage the rough spots.
So, now he is really getting annoying with his constant questions, my feeling his greater dependence on me and his no longer being the person I married. I had to take more and more responsibility and guide him. Having worked in a program for individuals with special needs, I had some strategies available for breaking tasks down and simplifying the environment more to his comfort level. But it was very taxing and at times I found myself getting very irritated and taking it out on him. Then, the guilt set in. He is not doing this on purpose. He has always been very thoughtful and helpful to me. Why am I yelling at him?
The support group helped a lot as we all shared similar feelings and consoled ourselves that we are only human.
An example will illustrate this: We continued to have lots of company as always. He had always been helpful in preparation and cleaning up. But now, if I said to him to make the salad (which he could do in times past), I had to put out one ingredient at a time and tell him exactly what to do. One day, I gave him the cucumbers to peel. He was fastidious about keeping a compost pile for his garden. So, the next thing I knew, the cucumbers were prepared and put in the compost. Another example: he wanted to know the guest list. I would tell him and then after the umpteenth time I would write it out. He refused to read the list and continued to ask.
I would try to remind myself that he could not help it.
Another example: We took many walks. When we came in and took off our coats, perhaps had a snack, he wanted to go for a walk. I tried setting up videos about baseball (which he used to enjoy) and he would last very briefly --maybe a little longer if I sat with him.
This raised a major problem for me as I was still trying to carry on some of my interests in addition to the responsibility of his care and the house.
Physically, he still had lots of energy and was in good shape.
JB: How did Bernie cope with all of this?
ESR: An example of what Bernie said on several occasions when he was asked to speak:
"In retirement, I had expected to extend my leadership in the general community, but I am coming to see that I am losing my capacity to continue as a role model, to provide leadership and to sustain the respect that I had. I'm not as efficient about returning calls and letters. Increasingly people tell me that I've told them things previously. I'm losing confidence in myself. I am skeptical about my ability to make a rational and effective speech." (4-25-02)
One morning, he woke up and told me that he felt like he was floating and he didn't know where he was going. He said he felt physically well, but he wanted ask a doctor if there was anything more to do about the Alzheimer's. He was shaking. I made contact with my son-in-law Steve (a neurologist) and he spoke with Bernie over the phone, reassuring him that he was doing well and was being taken care of. Bernie still was not satisfied and continued to be agitated even with reassurance about the appointment at the VA for the next week. I then paged our local neurologist who talked with him and assured him that he was fine.
It took a long time to console him. I offered to go with him to daycare and reminded him that he was going out with Tep after that. He could not pinpoint what was bothering him, but referred to the skin problem on his head. He had had to have a lesion removed. It seemed as though he connected that with the Alzheimer's. (4-24-06)
Bernie woke up feeling sad and asked me to sit with him. He said he needed help with his confusion. He needed to do something to fix things. He felt like a failure. We talked for a while, reviewing the past and his accomplishments. He wasn't able to verbalize a lot other than that he felt he needed to do something to make things better. I verbalized for him the frustration of memory loss and that it was tough for both of us. I assured him that we would continue to support each other and reminded him of the children and friends who still hold him in high esteem. He then asked me what he needed to do now and said he would shave and get up. (11-14-06)
On many occasions when speaking to groups or in conversation, he would say that Alzheimer's is like a baseball pitcher who has injured his arm. Then he would point to his head and say something about having been a professor using his brain and now that was injured.