A daughter, who has been caring for her mother in the daughter’s own home for over seven years, finally reached her wit’s end as her mother’s condition deteriorated. Mom needed help bathing, dressing, taking medications and even going to the bathroom by herself. The daughter was giving service above and beyond the call of duty to keep her mother out of a nursing home, but the stress level got so high that she made an appointment to see what outside help might be available before her own health deteriorated. Fortunately, we were able to inform her that with a little tweaking, she could get about $5,600 per month of home care.
In evaluating the mother’s needs, it was clear that mom had a fair degree of dementia. The effects of dementia often ebb and flow. One day the person makes no sense. And then all of a sudden there is a brief period of quite logical thinking and decent memory. One aspect of this “smart dementia” is that the parent does not forget how to push the buttons to get the caretaker child upset or feeling guilty. As the daughter said to me, “She can smell a cookie a mile away.”
Smart dementia gives the parent just enough mental capacity to partially mask the inability to do life daily functions. And it gives the parent just enough control over the child’s emotions, who is looking for any hope that mom or dad is not irretrievably slipping away, that the parent discourages the child from seeking outside help. For example, in that more lucid interval, the parent might say, “I don’t want anyone else coming into our house.” Or “Who are you to tell me what to do?” And the all time winning quote from the mother of one of my own staff members, who had emigrated from Eastern Europe, “The Communists would have treated me better.”
If you only spend a few minutes with a person with smart dementia, you can be tricked. The ten minute doctor’s examination, with questions seeking yes and no answers, may lead the doctor to think everything is fine. Let’s face it, few people want to admit they aren’t fine and that they need help, so they will say everything is fine, and unless the doctor questions carefully, the problems will be minimized.
The same can be true if out of town children come for a short visit of a few hours. All might seem well, but if the visiting child doesn’t see a full daily cycle, which includes breakfast through going to bed, the need for help might be missed. Some people do quite well in the early part of the day, but as the day goes on, “sundowning” takes over and the “smart” part of the dementia disappears.
The thrust of this article is to advise that those giving care to their loved ones, should be alert to the smart dementia situation, and not be lulled into putting off getting a little bit of outside care each day or week, in order to avoid building up caretaker stress. Better to be smart yourself, than driven crazy. And that keeps your loved one at home longer.