ESR: Before Bernie was placed in 24 hour care, he was invited to testify before the US Senate Committee hearing advocating for more research and for higher standards of training for aides for Alzheimer's patients. As we sat there waiting for his chance to speak, I was apprehensive about whether he would be able to speak coherently. He astonished the audience who were well aware that he was an Alzheimer's patient when he stood up and addressed the packed room as though he were still a professor delivering a lecture.
Once Bernie was in 24 hour care, there were still instances of his being with it in spite of the dementia. We were all moved by his participation at our granddaughter, Lianna's pre-Bat Mitzvah.
Whenever he was with Lianna, she found a way to engage him: she would involve him in an exercise routine or some games. She said she did not want to be Bat Mitzvah without Bernie's presence and it was clear that he could not travel to Baltimore. So, a few months before the actual Bat Mitzvah, we arranged with the facility to use the living room for a pre-Bat Mitzvah ceremony, borrowing a Torah, and all 18 of the immediate family gathered for the service, which she and her family conducted. Although Bernie could not recognize a single one of us, his whole demeanor including the expression on his face nevertheless indicated that he clearly knew that this was an important event. At an appropriate point in the ceremony, he spontaneously stood up and spoke about the family with emotion and clarity, as though it were the old days, BA (Before Alzheimer's).
Lianna's pre-Bat Mitzvah
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Family was very much involved in all decisions and their support of whatever I did was helpful. It really makes a difference when a family can agree. In support group, we heard of the angst in families where there was disagreement about the care of the patient and often about related financial matters.
Fortunately, early on in support group, I had learned about getting involved at the VA. With that contact established early on in the disease, we knew that when he needed nursing care, he had a place to go.
Bernie thrived at the assisted living facility. However, after two years, his condition worsened. He became less steady on his feet and less able to engage in activities. He also caused major flooding damage when he turned on water in the laundry room and left it running. It was determined that he was now ready for more medical care. At that point, we moved him to the VA. Again, personnel at the Alzheimer's Association were most helpful, practically and emotionally, in the transition.
The personnel and the care at the VA were excellent, but it is not pleasant to visit any nursing home. Bernie maintained his pleasant appearance in spite of the dementia. He also still maintained a pleasant demeanor and the aides and nurses appreciated his expressions of appreciation although by now, it was mostly a smile or maybe a word or two. He was no longer able to walk and needed to be fed.
with Bernie at the VA, fall 2011: Robin, Sharon, Joel and Eric
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Robin, Sharon, Joel and Eric with Bernie
Local family visited him and the out-of-towners kept in touch by phone, although those were really just one-way conversations. They came in to see him as much as possible. Having another person present made the visit easier and we sometimes had family visits at the VA. We soon got to know family members of other patients and that was also a help.
By then, Bernie's responses were minimal but he did light up when the familiar aides came in. Sometimes we would sing to him or tell jokes among ourselves and occasionally talking about something familiar to him, he might repeat a word.
I just remembered another ceremony we had. When we first placed Bernie in 24 hour care, we put a mezuzah on the door of his room. Then, we went back home and had time together, our four kids and me. Joel had written a beautiful poem and we all reminisced. It helped a great deal with the transition. Sharon had also downloaded my emails to the family and put them in a notebook as a way of supporting the decision by verifying all that we had done to care for him, short of placement.
Something that threw me: the VA has a family picnic each year. We were sitting together where the dance band was playing and a few people were "dancing'. I looked at him and saw that he was crying--not just tears coming down--really crying. So I hugged him and tried to reassure him and then got an ice cream to feed him. My read on it was that the music reached him. We used to go dancing. Robin said that when she took him to one of the music sessions, he had the same reaction.
When they moved Bernie to a private room for the final hours, we arranged for the rabbi to come. Local family was there and we hooked up by speaker phone to those not able to come. We each spoke to Bernie, who by that time was totally out of it. This proved to be a very important part of the good-bye process.
Now, I look back at all of this with a feeling that we all did the best that we could and tried to maintain some quality of life for him and for our relationship with him as the illness progressed. In many ways, I feel very proud of myself for finding ways to cope and afford him as good a quality of life as I could, under the circumstances. I feel good about being helpful to others who are going through similar situations.