You don’t say.

Some have it, some don’t. Some can think on their feet, some can’t.  I don’t have it and I can’t do it.

My daughters have it, my mother did, so did her sister, and many of my friends do. I mean quick wit, the ability to lead conversation away from touchy subjects. That ability is a gift so important when dealing with someone who has dementia, or indeed for any illness for which the prognosis is dire.

To redirect is a thing in dementia care, a way to direct the loved one away from a topic that is sure to lead to increased stress, a meltdown, anger, tears. To redirect is a mechanism to avoid answering a question that the caregiver doesn’t want to answer and that the patient doesn’t really want to hear.

My corny  excuse to explain my total ineptitude with numbers is, I do words, I don’t do numbers. Likewise, I’m not much of a talker. I use pencil and paper and I listen. As my taciturn dad always said of himself, “Someone has to  listen.”  After the fact, I can always think of what would have been the smart thing, the right thing to say.

For people like me I recommend thinking up a list of things to say when needed. I’ve learned not to say to Peter, “I’m going home,” rather, “I have to leave now.”  I’ve learned not to say, “I’ll see you tomorrow,” rather “I’ll be back,” or “I’ll see you next time.” It’s a way to get around the truth which could well be, I need a day for myself tomorrow, but I’ll see you the next day. I don’t use the word “home” in case Peter were to say, “I want to go home too.” On the very few occasions when he has actually asked when he can leave, I rely on something glib like “when the ravens leave the Tower.” He laughs, I laugh, and his plea is soon forgotten. “Never” is way too harsh an answer even though it’s the truth.

Said euphemistically.

In professional caregiver circles* there’s a controversy about whether dementia patients should be lied to— euphemisms like therapeutic fibs, stepping into their reality, or brief reassurances are sometimes used.  I don’t want to lie, but I bite my tongue if to tell him the truth would make the in-the-moment problem worse.

I’ve read articles that advise talking about simple things, talking down, in other words, to the patient’s level. I  choose not to do that. The way I engage Peter is to tell him what’s going on in the world, the good and the bad. He listens with interest, nods his head or shakes it as punctuation and, at that instant, I truly think he understands. His grasp of my words is brief, but I always feel as if, in that short-lived span, I’ve reached him.

I have a mental file of funny stories to tell him about our two young adult grandkids. He grins as he listens. I share little snippets of gossip I’ve heard, even out of context, and he chuckles. News of our friends interests him, if only for the length of a smile.

As I’ve always done, I do it my way.

Photo memory.

Just yesterday, Peter looked at family photos on his bulletin board and, as he does, counted pictures of himself. He stopped suddenly and said, “There aren’t any pictures of me mum and me dad!  I really should go and see them…’aven’t see them for years, ‘ave I?”

What to say quickly? “Well, you had framed photos of your dad on the dresser,” I said, “but you hid them.”

He was shocked. “Why? Why would I do that?”

“I don’t know….” I gulped  but barged ahead with the truth, “…they both died years ago. Your mum, in 1974 — it’s 2019 now — and your dad, in 1999. He died two days after my dad! We got home from his funeral to find out your dad was gone.”

“No one ever told me! Why didn’t I know?”

“You did know. We got back from Ohio one day and a little more than 36 hours later we were on a plane to England.”

He plopped down to think about this news. While he thought I wrote on his message board:

Mable Doris Walsh Clarke b. April 1, 1908, d. March 30, 1975
John Abraham Clarke b.November 13, 1909, d. November 8, 1999.

When I showed him he said, “How did all that get there,” pointing at my words.

I showed him the green marker I’d used. “I wrote them,” I said.

He waved his hands. “But how did you know all that?”

“I remembered it,” I said. He shook his head. “Someone’s got to remember these things, and you can’t, so I do.” He laughed, as I’d hoped he would, and hugged me.

For once I used the right words.

*”The Memory House / The comforting fictions of dementia care,” Larissa MacForquhar, The New Yorker, October 8, 2018. MacFarquhar is a staff writer, author of “Strangers Drowning,” and an Emerson Fellow at New America.

Header: Peter with his afternoon cuppa.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

16 thoughts on “You don’t say.

  1. Caring for someone you love who has dementia is a “practice.” It’s like medical practice, nursing practice, legal practice in several ways. You get better at it with experience…as you practice. You learn what works best…as you practice over time. Most of all, practice develops as you work with a variety of people, everyone is different and what works well with one person may not work with the next. Peter changes who he is on you, he’s not the same person he was when he went to Warm Hearth, never mind who he was a year ago, or two years ago, or five. So you sort of have to make it up as you go, and sometimes what you do works and sometimes it doesn’t work as you would have liked it to. It sounds like you have found ways to be honest but thoughtful about not confronting Peter in a way that will be upsetting to him. So be gentle with yourself. Like all practice, it’s just that, an on going learning experience.😘

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  2. What you do Judith is give care.
    You give of yourself when you care for Poppy. And that, my dearest Mama, is why he is thriving. You have made a very difficult situation for Poppy (and you) so much better by giving care…and giving of yourself.
    Good nurses give care…
    💕❤️

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  3. We do the best we can.. some days we are right and other days we wonder what we were thinking ! Our best is good enough because we keep trying with love. That’s what you do like a rock star !
    ❤️ Amy

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  4. Having a spouse recently in care, I’m still getting twisted up inside when I don’t have an easy response to difficult questions – but am learning to just let the question hang in the air if I don’t quite know what to say. Vagueness helps, too. What seems to matter most is me being warm and affectionate, rather than anything I actually say or don’t say. So, when in doubt, hug. Seems to work.
    Thanks again for writing about these things – very very helpful.

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    • And thank you, J! There was a time when my husband refused hugs or any affection at all, but now he welcomes my “advances.” That’s one of the few good things about our present situation. As to vagueness, I often use the English person’s noncommittal “mmmm,” and let it go at that.

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