the happy couple, BA [Before Alzheimer's]
(image by Reisman family collection)
My guest today is Elaine S. Reisman. Welcome back to OpEdNews, Elaine. In 2011, we discussed your new interest, teaching drama to senior citizens.
Joan Brunwasser: Today, we're going to be discussing something very different. Over the last number of years, you've become immersed in the subject of Alzheimer's. Why?
Elaine S. Reisman: In May 1995, my husband, Bernie, went to a convention in Florida with some colleagues. I had been a bit concerned about his asking me the same questions over again and repeating some statements, but he still seemed to be functioning well. What alerted me that there was more to it was that he did not come home on the day he said he was to arrive home. I guessed that he had been confused and checked the hotel, verifying that he was still there. Since he was traveling with other people, I realized that he was OK and said nothing about it when he came home.
For about 30 years, he was a much revered professor and director of a graduate program at Brandeis University. When he decided to step down as director, he continued teaching and presenting workshops. Then, I began to learn from his secretaries that he was asking them to repeat tasks they had already done. That and the Florida incident made me quite certain that he was on the 'dementia' road. His father and several aunts and uncles had had Alzheimer's.
For the next four years, he continued to teach and I continued to hear from secretaries and colleagues of their concern about his functioning. At home, memory was an issue, although he was still able to tend to his daily needs, drive to where he was going and keep appointments.
JB: How did you react to his slipping behavior?
ESR: I found myself losing patience and sought help from the Alzheimer's Association. I joined a group which afforded me emotional support as well as practical information. I chose a group that also had a patient support group. Bernie was not ready at that time to go to the patient group as they were much further along than he.
After I had been going for a while, I had eye surgery and it was necessary for him to drive me to the group. By that time, he was further along in the disease, so when he came in with me, I introduced him to the others, including the leaders of the group for the patients. He was amenable to their invitation and began to attend the group.
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
The Reisman family, 1960
(image by Reisman family collection)