Enjoying the world of dementia

My grandmother mostly had delusions when she was sick – except for a persistent delusion that she had been left out of her parents’ inheritance. Usually we was a pleasant lady, with a good sense of humor. For her, dementia meant nothing like I used to think it meant. She was neither a crazed ax murderer, nor a odd duck on the lines of Doctor Demento. You could enjoy being with her, and most of her guests did.

Some of my grandmother’s delusions were related to poor eyesight, if not poor memory. She didn’t remember seeing some things, so she thought they had disappeared. Case in point: her little dog. The fluffy thing slept in bed with her, but the bed was big enough, and her eyesight was poor enough, that she constantly asked about it. If we couldn’t tell her quickly and accurately where it was, she had been known to grab her cane and head down the back steps by herself (remember, she was almost blind as well as wobbly) to look for it. I eventually made a sign for the respite caregivers, which said in big letters (which she still couldn’t read), “WHERE’S THE DOG?” She was happier when she always knew.

But sometimes she asked more difficult questions, such as, “Where are the children?” or “Where’s Jay?” Jay was her son who had lived with her until his suicide ten years earlier, in her kitchen, while she was visiting friends.

How would you answer that question? Treating a person with Alzheimer’s with gentleness means not shocking them unnecessarily with facts they have forgotten. According to an article given to me by the local chapter of the Alzheimer’s Association, treating a person with Alzheimer’s with gentleness sometimes means entering into their world of delusions, even when you know it isn’t real. I had ethical problems with lying to my grandmother, so I found ways to tell her truth without saying enough to shock her.

In this case, I could usually answer the question, “Where is Jay?” with “You mean Ed?” Ed was her youngest son who, unlike Jay, was still alive and visited her two or three times a day. And she would usually reply, “Of course, of course, I mean where’s Ed?” And I would tell her, as much as I could guess his whereabouts. My youngest uncle was a regular fixture in the downtown bohemian scene, so at certain hours, he could be imprecisely predicted to be drinking tea and discussing philosophy with other bohemians – a delightful person. (But his name is not Ed. I don’t use any real names in this blog, to protect the privacy of my family.)

What about the times when she replied, “No, I mean Jay. I could have sworn I saw him somewhere.” At those times, I might reply, “No, I’m not sure where he is. Maybe he’s resting.”