Slow Dancing with Dementia

As I sat waiting to get my flu shot (for Mama’s protection more than mine) and my TDAP shot (so I will be allowed to hold my new grandbabe when she/he arrives), a woman a bit younger than I pushed her mother’s wheelchair into the waiting room. Her mother, slumped in her chair, spoke with the drawn out laborious speech and contorted face that typify a stroke victim. A wife walked with her husband, unmistakeably a veteran, as he pushed his walker slowly to the exam area door when his name was called. As I was leaving, both arms poked, another woman stood with her mother at the reception desk. The elderly woman said to her harried-looking daughter, “Why are we here?” Although  I accompany my mother to 15 health facility waiting rooms to my one, I was very aware that I was flying solo on Friday. I felt a little judged. How easy is my life that I just waltz into a clinic alone, get what I need, and breeze out?

Several things came my way this week that I put on my list of possibilities to explore in writing. My sister sent a couple of tidbits; I read some interesting things; I had some bizarre conversations with Mama. And then there was my guilt about being in the doctor’s office alone (after being with Mama at her heart doctor’s office on Wednesday for an hour and a half; another story). But it was just this morning that I read a compelling story that pulled everything together. It’s uncanny how often my weeks are thematic.

A tidbit my sister shared:
“The elderly complain about food not cooked to their liking or of the wrong brand because they’re unnerved by a world that feels too big for them to manage, and they want both the comfort of the familiar and the relief of making it someone else’s problem.”

Were the chocolate chip cookies Michelle made this week “not good” because she can’t cook or read a recipe or pay attention, as Mama contends of everything she makes; or was she just disappointed that they weren’t what her memory said they should look or taste like? (I thought they were delicious.) Were they really too sweet because Michelle doesn’t remember to put in less sugar than is called for, or because Mama’s taste buds reject all meant-to-be-sweet food as too sweet, even though the sweetness is what she craves and the reason she continues to buy or bake it? Michelle’s problem, not Mama’s.

The conversation over dinner:
Me: I see you and Michelle made soup today. What else did you do?
Mama: We walked at the mall. And stopped at Shop ‘n Kart.
Me: What did you get at Shop ‘n Kart?
Mama: Amy’s black bean soup.
Me: (puzzled) Oh! I thought you couldn’t eat whole black beans.
Mama: silence.
Me: Can you eat whole black beans?
Mama: silence.
Me: Are they softer in Amy’s soup than they are in other food?
Mama: silence.
Me: Are you going to answer my question? I’m just wondering about expanding my food repertoire, and you told me a long time ago you could only eat refried black beans, not whole ones. Did I misunderstand?
Mama: Refried beans are whole beans.
Me: No, they are smashed.
Mama: Yes they are whole! They have tough skins in them.
[Now that is just ridiculous. She has no trouble, i.e. no removal from the mouth, with refried black beans, ever; and we have them twice a week. They do not have tough skins in them.]
Me: Refried beans are, by definition, mashed up or pureed, not whole.
Mama: silence.
There was no point in continuing the conversation.

The tie-in
I follow a blog called “Watching the Lights Go Out,” written by a physician with early onset Alzheimer’s. In a recent post he quoted James Oliver, author of Contented Dementia:

“Imagine our context as a series of pictures in a scrapbook. If all the pictures are there, we respond out of ‘reality.’ The primary difference between the person with dementia and the person you used to know is a single disability: they can no longer store information [the pictures] efficiently and must often, therefore, respond based on the few pictures that remain. So as the person with Alzheimer’s tries to respond to the question, say, ‘What did you have for lunch?’ but can’t find the picture for today’s lunch, some other picture has to be chosen. And in that other picture lies the problem. But if the caregiver can discover the set of pictures from which the client is acting, problems can be avoided.

“Out of that understanding come three rules:

1. Don’t ask questions. Almost any question requires the client to retrieve new information. If they’re unable to do so, they can become anxious and fearful.
2. Learn from them as the experts on their disability. Assume that everything the client says or does has meaning within their world of limited memory and perception.
3. Always agree with everything clients say, never interrupting them. First, disagreeing requires them to access the pictures they no longer have, which can arouse significant anxiety. Second, it precludes our entering into their world, preventing us, the caregivers, from gathering information about their reality.”

The dance:
We believe that Mama has only mild dementia, a bit advanced from low-end continuum memory loss, but nowhere near high-end Alzheimer’s, or even moderate dementia. We could be mistaken, but it hardly matters. There is no cure, regardless; and there is no prize to the family who can deny the longest that their loved one has lost their ability to be reasonable. It’s not like we can argue her back into rational thinking. We want to believe that if we make her make sense, we are keeping her attached to our world—it’s in her best interest not to enable her craziness by playing along, right? And she believes that if she just did Sudoku puzzles or played word games like she and my dad did (well, not Sudoku, maybe; she couldn’t remember the “simple addition” game they played), her mind would stay sharp. (Yes, that came up this week, too). We are all dancing with denial.

On the other hand, I don’t want to dumb her down; she is very smart. But so am I. I can figure out when a question will work and when it will agitate her because she can’t find the answer. And explaining to me why she once told me she can’t eat whole black beans and now she can—or thinks she can or has forgotten she can’t—at least in Amy’s soup, is not possible. And that is why she was silent. Was her mind flipping through her photo album, searching for the missing picture? That just makes me sad, to think that I caused trauma when she discovered the page was blank. Perhaps her one response, her contention that refried beans are whole beans—evidenced by the imagined presence of skins—was her attempt to make sense of it.

New steps:
I think…yes…she is still able to answer simple questions that involve the present moment: “Do you want fish or chicken for dinner?” or even, some days: “What do you want for dinner?” But she can’t square something she said or did in the past with something she says or does in the present. Time for some new dance steps. And a chocolate chip cookie.