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. 

 

‘To-mah-to!’ ‘To-may-to!’

Peter looked very guilty yesterday when I asked about the green tomatoes basking in the sun on his windowsill. My husband doesn’t like tomatoes, ripe or not, although he did eat some fried green ones accidentally one time.

“Tsk, you picked these from that raised garden outside, didn’t you?” I said. I pictured him skulking along next to the tomato plants that had languished all summer in a too-shady spot. Some resident—maybe several residents—had planted not only tomatoes, but cucumbers, squash, strawberries, and a petunia.

Peter looked like a naughty little boy. I could hardly keep a straight face. “Whoever planted them,” I added, “won’t get to eat them.” I threw in an extra “tsk” for good measure.

“Well! They can have them,” he said, shuddering, “I don’t even like to-mah-toes.”

 

2016 National Society of Newspaper Columnists’ contest finalist. 

‘Between the sticks.’

I started section one below on February 9, the first day of the 2018 Olympics. Danged if Life didn’t cause an interrupt. I no longer remember where I was going with a soccer reference, but I do know where I’ve been. It’s nowhere I’d recommend.

2/9/18 – The nicest thing I do for my husband is circle the soccer matches on the sports page. I jot the channel numbers next to the listings, too. Peter loves his “football.” I did not do it yesterday when the Olympic events began.  The winter games only come along every four years and soccer took a back seat.

People say I’m such a good caregiver, so patient with my ever more confused husband, always able to laugh at our plight. But really, except for reminding him about football matches, No. I’m. Not.

As his condition worsens my stress heightens. No surprise there. Exhaustion envelopes me like shrink wrap on a carton of mushrooms. While Peter sleeps easily and long — 10-12 hours a night, plus mid-day naps — my sleep is a power nap now and then and seven or eight interrupted, restless hours at night.

As Peter becomes more oblivious to things, I become more aware of every thing that could go wrong with our lives, our health, our house, our country, our world. While he sinks into what could be likened to torpor, I become more frantic about what needs doing, fixing, cooking, washing, repairing, mending, replacing.

Any caregiver who is on duty 24/7 will understand. I’m lucky in comparison to some because I do have help with Peter several times a week, two daughters to advise me, cleaning help, and friends to console me. But still I fret.

4/14/18 – Where I’ve been is in the throes of indecision and upset unlike any I’ve experienced on this caregiving journey. In my most recent posts I’ve written a lot about the problems, the angstYet, as I write, I cringe. Whining doesn’t help.

Since February 11 and all the chaos that followed that event, our lives have changed. For one thing, my formerly cussedly independent husband is now very needy. He can no longer do even the simplest things — make his own tea or a sandwich, walk the dog, or even walk by himself without stumbling or falling. All these are markers for the escalating effects of Alzheimer’s.

He can no longer visit nursing homes with Nobby. Even eating out is problematic because he can’t make up his mind what he wants, yet doesn’t want anyone to choose for him. He’s satisfied watching Netflix at home these days rather than going out to a movie.

I’ve had to take further steps to ensure his safety inside the house — locks on the basement door, for instance, and no locks on bathroom doors. I took rugs up lest he trip, put covers over the stove’s gas burners, and I never leave the house without him, even for a quick dash to pharmacy. “I am OK on my own,” he yells when I insist he come with me.

These days we play endless games of dominoes, occasionally go for coffee or a drive. He even refuses to walk Nobby because he doesn’t want me to go along. “I can walk by myself,” he insists. But he can’t, not any more.

The one thing my husband still can do is pick up sticks in our yard and  little patch of woods. He was thrilled two weeks ago when he could clean up a big branch that broke off our maple in heavy snow. He spent the weekend snipping, breaking, and sawing branches into precise lengths for the town’s after-storm pick-up. Son-in-law Martin arrived with his chain saw to take care of the biggest section.

Other caregivers would understand why such a silly thing as watching my husband’s obsessive twig collecting nearly drove me ’round the bend. When I complained to Martin he said, “He’s having fun, he’s out of your hair, he’s happy.” I laughed. He was absolutely right.

4/15/18 – Where we’re going is a post yet to be written, a post I don’t want to write. In the meantime, on this stormy Sunday afternoon, Peter is in the woods picking up sticks.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

Play the cards you’re dealt.

My husband has taken to putting decks of cards in order, by suit, probably related to his need to control anything he can, however unimportant the activity seems to me. This latest obsession was especially noticeable when we visited Carolynn and Bill for a week.

Carolynn and I had put two decks of cards, a pad and pencil on the picnic table under a tree before lunch. The two of us were ready for an afternoon of canasta, part of our ritual weeklong championship.

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After we ate, Peter picked the cards up and began to lay them out, face up. He shook his head and frowned. “How do you know which deck to use?” he asked.

“We use both decks.”

“But they’re alike.”

“Doesn’t matter. Canasta is played with two decks, plus the four jokers.”

He continued sorting. When he finished, he knocked each deck sharply against the table and slid them neatly into their boxes. Even though Carolynn and I shuffled them over and over, the first hand we played after he’d organized them wasn’t well mixed. After she won that game too, we gave the cards back to Peter to organize all over again. He was happy.

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The joke is on me because later, when I Googled “organizing cards,” thinking I might learn another tidbit about dementia, I discovered instead that people around the world engage in contests to determine who can organize cards the fastest.  A young Canadian man set a record set a few years ago when he sorted a pack of cards in 00:22.60. There were no jokers in his deck though.

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Photos: Safari wallpaper

2016 National Society of Newspaper Columnists’ contest finalist. 

‘So far, so good.’

The insurance company nurse comes twice a year to assess my husband. One of her questions is, Can he bathe himself, brush his teeth, toilet himself? She asks Peter, but looks to me for answers.

I know he scoffs silently at the mere mention of the topic.  My answer is always an enthusiastic yes. On that point I am — we are — way luckier than many who live with any form of dementia.

Peter has been taking multiple showers a day for the past year or so. This wasn’t always the case. I used to have to remind him he needed a shower, but now, if he sweats even a tiny bit, he reacts as if he’s been dipped in pond scum. “I’m all sweaty,” he’ll say as he races through the house and up the stairs.

He almost never puts on clean clothes afterwards. I don’t understand, but I don’t question, glad that I don’t have to help him bathe nor wash piles of clothes…yet. For some reason, wearing a shirt that is damp and stinky doesn’t bother him. It’s the sweat itself that is his bugaboo.

The rest of the personal hygiene issues aren’t issues yet. From the articles I’ve read, I know what’s coming.

Peter always says, if asked how he is, “So far, so good.”

“It could be worse,” is what I say if anyone asks me.

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2016 National Society of Newspaper Columnists’ contest finalist. 

‘Blue skies, smilin’ at me, nothin’ but blue skies do I see…’

If only the lyrics from Irving Berlin’s “Blue skies” were true at our house. Phrases and actions cause repeats — I call them rePetes — in Peter’s brain. Picking up tiny sticks in the yard and endless sweeping on our brick terrace are two of them.

Lately, with November’s crisp weather bringing brilliant skies, Peter has become enamored of the beautiful blue. “Not a cloud in the sky,” he says over and over. “I’ve never seen such a blue sky.”
“Yes, it’s a beautiful day,” I agree.
“Look at that. There’s not a cloud in the sky. Have you ever seen such a blue sky?”
“Mm-mmm.”

I guess there are worse things to be stuck on than the beauty above us.

“Blue days, all of them gone,
Nothin’ but blue skies from now on

Bluebirds singin’ a song
Nothin’ but bluebirds all day long…”
Ah, if only.

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While trying to find the perfect blue sky photo to use above, I came across this lovely little poem and accompanying picture. Thus inspired I thought, why not go outside and take a photo of our “I’ve-never-seen-such-a-blue-sky” sky? So I did, and laughed at myself for taking so long to think of it.

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a bluebird’s wing
by Kathleen Everett
Gray morning fog lifts
revealing the November sky
cloudless
clear
color of a bluebird’s wing
an autumn aster
your eyes

 

 

Header photo: “Not a cloud in the sky” taken by me, 11/14/15.
“Blue Skies” lyrics, Irving Berlin
“a bluebird’s wing” Kathleen Everett, The Course of Our Seasons ©2011-2015
Feather ©Rakkla