ESR: Our marriage relationship had always been very good for both of us. But now, it became difficult for me to be responsive. Romance is difficult to maintain when you have to get up in the middle of the night and walk through puddles of urine to check on your loved one who may be sleeping on the floor in the living room. Or, when you are doing the laundry and it is necessary to deal with soiled underpants. One way we kept a spark going was when we took walks together. We always held hands, even before the illness, but now this contact had a special quality to it. We walked along very close to each other, holding hands, and I would feel a sense of closeness. This was good and bad--it sometimes gave me false hope that we could return to the old days, even though I knew that was not to be.
I felt like I was being teased. He is here, but he isn't.
Then, came the letting go.
JB: What do you mean by that?
ESR: The children were after me to place him. I knew that was in the picture, but it was difficult to face. There is an element of "no one can care for him like I can". However, it was clear that I did not like having the help in the house--even though it was only for a few nights a week. Also, I had to fire one woman. She was too rigid and one morning I came down and Bernie was in tears. That did it. Although some of the aides were wonderful, I did not want anyone else taking care of him.
However, it became clear that the time had come and the children and I investigated places, finding one that was very convenient for visiting and seemed to be appropriate.
JB: How did that go?
ESR: It was a nightmare! Bernie still needed a lot of activity and was not about to just sit and watch TV. Although the facility we chose met all legal requirements, the supervision was inadequate to meet the needs of a more active resident. He urinated in the plants, wandered into rooms, and got into bed with others. Bernie still retained the image of himself as a facilitator.
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