First, I am not an expert in Alzheimer treatment, but unfortunately, I have had a lot of personal experience in my immediate family. My grandmother Lord was the first in the immediate family to become one of its victims. She admitted herself to the Mount Lebanon Methodist Home which, for people of little means, was essentially a personal care home. For many years her mind was good and she functioned independently. She had a distant cousin who developed early onset Alzheimer’s and gave her family a real run for their money. They lived in Florida.
Grandma and my mother were so appalled that the relative would do things like undress and leave the house naked and other outrageous behavior. In the 1960’s, I’m not sure they even had Alzheimer’s facilities. The victim’s family had to try to deal with it the best they could. When my grandmother started showing signs, we would talk to her about “memory loss”, but we wouldn’t use the “A” word. There was really no reason to, because she wouldn’t understand and she was already in a facility which would take care of her till death.
My mother’s disease was much more insidious. In fact, we had a preview when she was in her 50’s. We came home one weekend and she related a story where she had walked to Deemer’s – the town pharmacy, and on the way home she couldn’t figure out where she was. Somehow, she got reoriented and made it home. She told the PCP and he placed her on a low dose of an antipsychotic medicine. I don’t know why he chose that, but she had another good fifteen years!
The real noticeable changes started about the time my father needed a leg amputation. We were trying to keep them in their home, so the weekly visit turned in to Dolly and I putting up signs for my dad’s leg care, reevaluating the situation, and starting to slowly take over handling the check book. Of course, in the background, my father was yelling at her because he didn’t/wouldn’t understand that she, too, had a medical condition. We avoided using the “A” word, because she would be inconsolable, thinking she would soon be running through the neighborhood naked.
I spent a lifetime refusing to withhold diagnoses and prognoses at the family’s request – unless the patient’s cognition was bad. It would be cruel to keep information from a cognitively intact patient. They knew things weren’t right, and what they imagined was often worse than the existing problem. That required much additional time with the family to get them on board with the treatment plan.
What kind of Alzheimer’s situations have you had to face? Did you feel you received adequate guidance and support from your PCP? There are some important strategies to arrange care, which we will talk about later.