This post was originally published on my blog in May 2013, ten months after I moved in with my mother.
I know my sisters and I would be viewed with envy by those caring for a parent whose dementia caused a drastic personality change or who sees giraffes in the backyard. We know how lucky we are, and how lucky Mama is. In many ways she is more the person she has always been, both the maddening and the lovely.
Her dementia is insidious, though, and sometimes we don’t notice the subtle forgetting. We pass off the ridiculous things she says as the “say what?” way her mind has long worked. “Validation technique” is not useful. We can’t just ask her how many giraffes are in the back yard and say we hope they don’t eat all the leaves off the trees. Which arguably would be more fun (if also sad), and easier not to argue with.
She doesn’t remember the schedule. I have tried memory aids. First a large calendar with the dates made darker with her 20/20 pen. The calendar is right by the phone, but she schedules things on top of things anyway. She doesn’t look at the white board on the refrigerator, where I write in large block letters what is happening on the current day and the next day, so she is surprised when I tell her I’m going to yoga tomorrow, not today; or Rebecca is coming for dinner tonight, not tomorrow. I remind her to look at the board or her calendar and she says nothing.
She refuses to turn over control of scheduling her helpers. She forgets when they are coming, gets addled when they change the schedule, forgets that she has changed the schedule, overlaps them then complains each time that it’s confusing when they come at the same time. Last month she and M―without my knowledge or input―decided M would come four mornings a week rather than five, and chose my one day away for her to be off. Each time I offer to help, she says, “If I’m paying them, Gretchen, I will schedule them.” I roll my eyes and back off.
I want to be able to let her how-to instructions roll off of me. (How have I managed for forty years not to poison anyone by cutting vegetables on the same cutting board I cut raw chicken on without her guiding voice over my shoulder?) I want to be able not to argue when she tells me I should not have called the septic company I did because they have moved across town and they charge mileage. (It’s three miles across town.) I try to let go of her questioning of my ability to write checks for six bills in spite of the fact that I kept the financial records for a large church for eleven years.
It is stupid to argue with a person who has dementia. It’s hurtful and patronizing and harmful to their self-esteem. It takes a big person to take the abuse of no-confidence, and let it roll off without dispute. I’m not yet that big.
Her world makes sense to her. However inefficient, she is the CEO of her household. To imply I know how to do a task I have plenty of experience doing, or suggest there are other ways than the way she has been doing it for 75 years, is as belittling to her as her instructions are to me.
So how to cope?
- Center: focus on breathing, count to ten, go to an alpine meadow in your mind (and in reality whenever possible).
- Take a minute and move: don’t you suddenly need to use the toilet or feed the cat?
- Try to figure out what is behind the statement. “Getting sick from food poisoning is frightening to you, isn’t it? It is to me, too. I will be careful.”
- Disasterize: “What so you think would happen if we were late to your appointment?” Perhaps the anxiety can be dispelled when worst case scenari0 is explored.
- Find someone to talk to, start a public or a private blog, keep a journal.
Mama’s dementia is not about me. It’s not about her, either. She is not her dementia. I would hold her hand if she had cancer; her heart if it were hurting. I can hold her brain, too. I will not lose my mind. Not today anyway.