I know my sisters and I would be viewed with envy by those caring for a parent with severe dementia; 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. Her dementia is less obvious, and in many ways she is more the person she has always been, both the maddening and the lovely.
But her dementia is insidious. Like a stick insect blending with a tree limb, 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.
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 (when I can find where she put it). 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 say yoga and grocery shopping are tomorrow not today; or when she asks where I’m going and I say to yoga, like I do every Wednesday; or Rebecca is coming for dinner. I remind her to look at the board or her calendar and she says nothing.
Me: When is Michelle coming?
Me: It’s almost 10 now.
Mama: I thought Dan was coming at 9:30. But he just called and I think he said he wouldn’t be here until 10:30.
Me: Dan is coming at 10:30. [According to the board on the refrigerator! Which was copied from your calendar.]
Mama: Maybe Michelle is coming at 10:30.
10:00 am. Michelle arrives, right on schedule.
It would be so much easier on all of us if she would 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 or that they told her they needed to, overlaps them then complains each time that she can’t have them there at the same time and declares those days “confusing” when they finally end. Last month she and Michelle―without my knowledge or input―decided Michelle would come four days a week rather than five, and chose my one day away for her to be off. (With my encouragement they changed it to a different day. I am now cooking us breakfast and taking her on an outing every Thursday, and each week she says “I didn’t know about that tradition.”)
I want to be able to let her how-to instructions roll off of me (how have I managed for 40 years not to poison anyone by cutting raw chicken on the same cutting board I cut vegetables on―which I was not doing, but just in case―without her guiding voice over my shoulder?). I want to be able to let roll off her criticism of the plumber I called (the right one, but she hadn’t told me who to call so how did I know) because they have moved across [this very small] town and they charge mileage. 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 11 years. In my 10 months here, I have improved the roll off, but have definitely not mastered the art.
It is stupid to argue with a person who has dementia. Is it hurtful and patronizing and harmful to their self-esteem. It takes a big person to take the abuse of no-confidence, and a healthy one not to absorb it. I have to assume that, even when I manage not to say anything, she can read my body language. It may be true that when I turn my irritation into a joke, it’s not funny to her. She knows to look for cues.
I know I can’t fix her; I have to go to her, she can’t come to me. Her world makes sense to her. Her world, in some way, validates her. However inefficient, she is the CEO of her household. To imply I know how to do the task I have plenty of experience doing, or could do it better than she has been doing it for 75 years, is belittling to her just as her instructions are to me.
So how to cope?
1. Center: focus on breathing, count to ten, go to an alpine meadow in your mind (and in reality whenever possible).
2. Take a minute and move: don’t you suddenly need to use the toilet or feed the cat?
3. 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.”
4. Disasterize or use polarity: “Are you afraid we’ll be late to your appointment? What would be the worst thing that would happen if we were late?” Get to the story behind the anxiety. Then perhaps the fear can be dispelled.
5. And be sure to find someone to talk to; or write a blog.
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.