The Giraffe in the Back Yard—Arguing with Dementia

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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?

  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: “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.
  5. 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.

Best Ever Granola

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The Story:

I had the great privilege during my sojourn with my mother to attend a master class at Hedgebrook women’s writing retreat center on Washington’s Whidbey Island. A week of living alone in a tiny cottage and being cooked for. None of the locally sourced healthy food was food Mama could have eaten, due to her digestive issues, and therefore food I did not prepare. It was pure heaven, and the granola was to die for. Seriously. I bought the Hedgebrook cookbook just for the granola recipe. From then on, there was a jar of it in my tiny kitchenette, along with yogurt and homemade applesauce that I warmed up. My daily breakfast. Now my Airbnb guests enjoy it during their stay!

The Recipe:

Makes about 8 cups.

4 c rolled oats
2 c flaked unsweetened coconut
2 c almonds, coarsely chopped
¾ c dried cranberries
¾ c raisins
¾ c canola oil
¾ c agave nectar (or honey, but it does taste different with honey)
1 tsp cinnamon
½ tsp cardamom (opt., not in original recipe)
A handful of pistachios! (also not in original recipe)

Preheat oven to 350 degrees.

In a large bowl, toss together oats, coconut, almonds, raisins, and cranberries (and pistachios, if using).

In a separate small bowl, combine oil, agave, cinnamon, and cardamom (if using). Stir well. Pour over dry ingredients and mix completely together until evenly coated.

Spread onto two 12×16 inch baking sheets lined with parchment paper. [I find it bakes best one sheet at a time.]

Bake stirring occasionally, until mixture is an even golden brown color, about 12-15 minutes. [I stir once after 7-9 minutes, then bake 4-5 more (times depending on the size of your baking sheet).] Don’t over bake, it hardens as it cools. Freezes well, and is lovely and crunchy eaten straight from the freezer.

The Unreliable Narrator

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Mama has cognitive dysfunction, or brain fog. As the years go on, gradually more of her brain succumbs to the fog, while other parts continue to fight it—and me—in every way it can. While dementia is advanced cognitive dysfunction, and Alzheimer’s a type of dementia, I still don’t believe she has those more debilitating diseases. But the synaptic failure she does have brings those of us who care for her to our knees in frustration.

Arguably, the most frustrating thing is her invention of facts to help herself over the fumbling for what is lost in her short term memory. The cognitive dissonance between what she has made up, erroneously perceived, misremembered, or pulled from distant memory, and what I am telling her is truth, stresses and agitates her. She fights to reconcile them and come out on top.

“I don’t think the nightgown I had on last night is mine. It didn’t feel right. I couldn’t sleep.”

“The one hanging here is yours.”

“Which one is it?”

“It’s pink, with bright flower fabric sewn on the bottom.”

“There’s a new night aide. She said it was bright purple. I don’t have a bright purple gown.”

“You do have a purple gown, two in fact.”

“It’s lavender. Maybe she’s colorblind.”

“Maybe.”

It’s impossible to know if this conversation even happened, let alone what was said. She tells many tales I know are not true, though, and her insistence that they are decreases her happiness quotient. It’s not possible to talk her into the truth. Add to that the stories that may or may not have happened and she’s a very unhappy camper. And it’s all because she is living in a place she doesn’t want to be. It happened when she lived at home too. She doesn’t remember that.

The food is swill, though she liked it when she arrived three months ago. Everything has gravy. She hates it. We were walking the halls the other day and passed her table mate just before lunch time. “See you at gravy time,” Mama said to her. In fact, at my request, she (supposedly) hasn’t been served gravy for the past three weeks unless she requests it. But I can’t know she’s not getting it unless I attend every meal with her; I can’t rely on her to tell me. She didn’t like the food at home, either. She doesn’t remember that. True, it had no gravy, but she wanted gravy then, or sauce of some kind.

“Lorrayne told me the dessert at lunch was pumpkin pie,” Mama tells me. “It tasted like gravy.”

“The menu says it was applesauce pie,” I say. (I’m quite sure her table mate didn’t tell her it was pumpkin.)

“It tasted like chocolate cake,” she says. I roll my eyes.

I don’t know how to fix this. I know she wants to come home, because life was perfect at home. Except there was her bratty daughter, she had no visitors, she couldn’t do anything except sit, her caregivers irritated her. And she didn’t get what she wanted to eat prepared the way she wanted it, which was based on her unreliable memory of the way it used to taste.

I feel sure people think I am a terrible person for not being able to keep my mother at home.