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?
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.