JB: I was wondering about that.
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.
So, he would often try to get the other residents to come to a "meeting'. He went from person to person and tried to get them up and out of their chairs so they could come with him. This was a safety issue for him and the others, who could have fallen and hurt themselves. Rather than distracting him by making a game out of this, the staff saw Bernie's actions as disruptive and were confrontational, which made things worse.
The staff viewed Bernie's behaviors as agitation and the consulting psychiatrist recommended a low dose of anti-psychotic medication, which actually made him worse. One time, according to their report, Bernie kicked an aide who was trying to get him ready in the morning. This was so not like him that I have to assume he was greatly frustrated. At times when I was in a room full of residents, staff was nowhere to be seen. In this incident, I assumed that the aide was rushing him to get dressed because of the pressure of her other responsibilities.
The nightmare got worse when we were told that we would have to hire a full-time companion or have Bernie evaluated. We chose the latter and he was placed at a local psychiatric hospital for evaluation. They continued to administer anti-psychotic medication which caused him to hallucinate and I wondered how they could evaluate him without trying to engage him. It looked to me as though they just stood around observing him as he undressed in the halls. They then put him into a one-piece garment he could not undo and continued to try different medications.
Visiting him was horrible!!! It was a ward with psychiatric patients exhibiting unpleasant behaviors. I took him out and - don't tell - I drove him around off campus. When it was finally agreed that he should move on, it was difficult to find an appropriate setting. They were crushing his pills, so that limited facilities to a nursing home. He was still in good enough shape that he needed activity more than medical care.
With the superb support of the Alzheimer's Association, we finally located an assisted living program for Alzheimer's Disease with a philosophy of trying behavioral and environmental accommodations for people with dementia. This proved to be a most satisfactory arrangement for about two years.
Here, Bernie also tried to organize "meetings'. But, there was more of an effort to redirect him as he tried to get people up and out of their chairs or wheelchairs. In thinking over this nightmare, I still carry some guilt. I feel as though I should have been more assertive about the medication. Since then, researchers and professionals in the field have questioned the use of anti-psychotic medication for dementia.
JB: Were there other situations where Bernie was still alert and tuned in, despite his dementia?