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.
I still regret having been impatient, not being more forceful about the medication, and the poor choice of the first facility. And I'm grateful for family, friends and the Alzheimer's Association for their support.
JB: What about now, Elaine? What have you been doing with yourself? How do you keep busy?
Next Page 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9
(Note: You can view every article as one long page if you sign up as an Advocate Member, or higher).
