Several weeks after he started, a reporter from the Boston Globe came to the patient group. Bernie asked me if it was OK to agree that they could publish his name and information. I told him that was up to him. He answered that he was concerned that his students then would know and have less respect for him. I assured him that they continue to respect him and that some of them have been aware that he was having memory problems.
He agreed to having his picture in the paper with the comments he had made in the group. However, he continued to to talk about the article for a long time after with a "Wow! That was really something! It was tough to think that I, a respected Brandeis professor, had this disease."
That really started what I call the pushback.
JB: What do you mean by pushback, Elaine?
ESR: With it now being public that he had the disease, things were ever so much easier for the family and for him. We no longer had to cover up. I pursued finding resources to aid our coping and signed up with the HOPE (Health Outreach Program for the Elderly) study at Boston University. Through HOPE, we were asked to participate in a variety of research projects. In addition, he was asked to introduce speakers for programs through the Alzheimer's Association and we both met with students in medical school classes to discuss the disease and our ways of coping with it. We testified before state and national committees about the needs for research and for training personnel to work with individuals with Alzheimer's. We made several videos, including one used for stimulating discussion about the cessation of driving. We became part of an advisory committee for the Alzheimer's Association. Each year members of our family participate in raising funds and walking in the Walk to End Alzheimer's.
Participating in these various ways helped us to feel that we were pushing back at the disease rather than just letting it push us around. Throughout coping with the disease, Bernie maintained his pleasant personality. That certainly made it easier on all of us, but made it harder for me when I lost patience with him. Why was I getting so irritated with someone who was so nice?
Bernie and Elaine with (from left) Sharon, Eric, Robin and Joel
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?