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.
Going to support group helped a lot. When he started going, it was clear that he still was somewhat with it and he took on the role of greeting the other participants. Often, members of the caregivers group would tell me that Bernie helped their spouse to enter the group. One time, the director of a daycare came to speak with us and several of our members suggested that Bernie might be able to volunteer in a day care. The director was great, called Bernie and asked him to volunteer.