Bulletins from the Land of Dementia

It has been two months and six days since my brother settled my mother into a pleasant, small home-based care home near him in San Diego.

My mother likes the people who work in the home and she has made friends among the other residents. She likes the warmer weather in San Diego and never complains any more of being too cold. She says she sleeps well, which was one of the biggest problems with her living alone as she imagined all types of dangers and anxiety and cold often interfered with her sleep. She loves the food (simple, home cooking with fresh ingredients).

Yet despite all this she has made herself almost frantic at times with the absolute conviction that she MUST leave and go somewhere else. She is not sure where, she knows she can't care for herself, and knows there is no family members who can take over her full-time care. Like all dementia patients my mother has developed elaborate delusions utterly divorced from reality, that have convinced her that she cannot remain in this care home.

She cannot help this, it is a symptom of the disease that is destroying her mental abilities. There is no way to fight the delusions of a person with dementia; there is no reason, no evidence that can dissuade the person to let go of their delusions. Any attempts often serve to strengthen the obsessions rather than enlighten. It is extraordinarily frustrating to Charlie and myself to see her struggle with these totally imagined demons, and know that there really is nothing we can do. In fact, the best thing seems to be for us to take some steps back away from her, fewer and shorter visits by Charlie, fewer and shorter phone calls by me.

The thing that strikes me about my mother's delusions, however, is that they are woven from the habits and attitudes of her entire life time. My mother always was a control freak. She always had to know what was going on - not only with her children and family members, but with her friends and neighbors. Then not content merely to know, she had to solve everyone's  problems - frequently when such help was neither desired nor helpful.

She trained us children early to stop telling her our concerns, if we didn't want her to bulldoze into our lives with her ten point action plans for how to solve our problems. Since her life as a housewife gave her no experience or insight at all into the work and social lives of me and my brothers her action plans were generally worse than useless, they were highly judgemental and intrusively critical. Her obsessive controlling actually drove my youngest brother to completely abandon her and our entire family, disappearing from all our lives.

My mother's delusion is that she is responsible for what happens to everyone at the care home; she believes that she is responsible for all the other people's safety and health and welfare. She believes that she that she was brought to the home for a trial "job" of working at helping to run the home. But that she did not do a very good job of it, because as she told me today - it is a very, very hard job and she can't do it. It is because she can't do the job of running the care home that she says she must leave.

She also believes that as nice as the people who work there are, that they are not really competent (she's never thought anyone was competent in her whole life - certainly none of her children or neighbors or friends). Her evidence of this lack of competence is that they do not do anything about the dire situations that are total fabrications of her demented mind. She naps during the daytime (as most of the residents do) and often has vivid dreams that are completely real to her. She reports the most fantastical events to me when I call.

She reported to me Saturday that a man died sitting on a bench in front of the house and that the people in the house wouldn't do anything about it for hours and hours, and that they didn't take care of the problem properly at all. While deaths in elderly care homes do certainly occur, no one died on the bench in front of the care home on that day. It was entirely a fiction.

Charlie and I try to tell her that she does not need to work, that the people are there to care for her, and that cost of her food and lodging and care is already paid. None of these things change her view. She tells me that the people there are not competent to take care of her. Sometimes she says there is no money to pay for her care, sometimes she accuses Charlie of stealing it all. But she refuses to believe that she can relax and enjoy and just be there.

I am fascinated by both the distortion of thinking and reasoning that dementia produces, and by the continuity that there is between the patterns of personality and behavior from the past - the obsessive control freak, who has to solve others problems for them whether or not such assistance is desired. The sum of our lives, our attitudes and our actions do seem to matter even in dementia.