Sometimes smiles are upside down.

“Any news from upstate?” Peter asked, as he always does at dinner.

He was disappointed when I shook my head.  “But Carolynn and Robin are coming this weekend,” I said, in attempt to cheer him. “Sam will be home too.”

He perked up. “Ooo, anything I have to do?” If he had a tail he would’ve wagged it.

“You did what you had to do today.”

“What did I do?”

“Got your hair cut so you’ll look handsome.”

“I always look handsome,” he said.

I rolled my eyes. “More handsome,” I said.

“Really? That was today?” his face, scrunched in disbelief, resembled a cabbage patch doll.

I nodded. “Afterwards, we went to Our Daily Bread for coffee.”

“We did? What did I have?”

“Your usual…”

“What’s that?”

“Apple turnover and coffee.”

“Really? That was today?”

“Yup.”

“I’m getting worse, aren’t I?”

My smile turned upside down.

“But I know what to do when I’m doing it,” he said.  “That part of my brain is OK. I can talk to the people at the…the…places where we go…I forget where…with Nobby…I just can’t remember when I did it.”

“You, Nobby and Bill go every Tuesday afternoon, and every Wednesday morning,” I said.

He shook his head and stared out the window. “But I remember you! And Nobby! That’s good isn’t it?”

“Mmm-mm,” I said.

“Any news from upstate?”

Carolynn and Robin will be here by dinnertime today. Peter will be glad to see them and will do his jolly, welcoming thing, but he’ll say I didn’t tell him they were coming.

Header photo: Family beach vacation that Peter doesn’t remember. 2011.

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Domino effect.

“You know how to play dominoes, Pete?” Bill asked on Wednesday. That question was all it took to wind my husband up after four weeks of down.

Not only did Peter go on and on about the social aspects of an Englishman “going ’round t’pub” on a Saturday afternoon, leaving “the little woman at ‘ome,” he chattered about the game  of dominoes itself. Bill always wanted to learn how to play, he said.

Peter’s sudden change four weeks ago forced me to act. I’d reached the end of my rope, stressed, dithery, muddled, still trying to handle everything myself. Leslie and Carolynn got after me, good daughters that they are. As happened, Bill, who’s been helping Peter for almost six years, suddenly had more available hours per week.

Serendipitous!

Monday, I’d arranged to use more of Bill’s time and provided a list of ideas and hints to guide him. In spite of Peter’s usually cheery persona, he isn’t always an easy client. And there are a lot more things to be aware of these days. His confusion has amped up.

So Bill was primed about dominoes. He no sooner mentioned the game than I began to look for our set. “It’s really easy,” I said, “but Peter can keep track of which ones haven’t been played. I just play what matches.” He laughed.

The two were out longer than usual Wednesday, while three of my friends came here for a lunchtime meeting. We did have some business, but more importantly, we laughed…a lot! It was a good time.

That evening, Bill texted to ask how Peter had seemed when he came home. “He was great,” I texted back. “You struck a chord mentioning dominoes.  More like himself than he’s been since that time…four weeks ago.”

The rest of the week was mixed ups and downs, but that one big, bright UP on Wednesday made such a difference.

Today we played dominoes, Peter and I. No surprise…he won…best of three.


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2016 National Society of Newspaper Columnists’ contest finalist.

Salt and pepper to taste.

“What do I eat here?” Peter asked over and over. I told him his usual Cuban pork wasn’t on the menu any longer, but he could have fish and chips. He was happy.

When our meals were served, Peter doused his three separate times with enough salt and pepper to fill all the shakers in our house. He has always used way too much of each, but lately, his habit seems even more excessive. Dementia, I’ve learned, can destroy the sense of taste, hence so much salt and pepper. In addition to over-salting, Peter has developed a sweet tooth that could make him a poster boy for the American Dentists’ Association dire warnings about sugar.

After watching salt avalanche off his mountain of fish, I pointed to the malt vinegar. “What is that?” Peter asked. I told him. “What’s it for?” he wanted to know. I raised my left eyebrow. “This is what you’ve always used, not all that salt and pepper,” I said. Malt vinegar on fish and chips is what one does, he told me early on when he introduced me to the English staple!

A sudden seismic change in my husband’s behavior has made the past few weeks troubling. I called it his “new normal” in a recent post. Not recognizing malt vinegar, nor knowing what it was for, was further sign of the change I’d noticed.

When the waiter asked if we were ready for the bill, I surprised both him and Peter. “No. I’d like coconut cake, please, and coffee. Two coffees.”

“Well, I’m having dessert then,” Peter said. The dessert menu was all photographs so it didn’t take him long to zero in on a chocolate cream puff.

Our coffees came first, each with tiny cups of half-and-half. “What are these?” Peter asked.

“Coffee creamer…you stopped using it years ago.”

He pulled a lid off. “Can I drink it?”

“No-o, you’re not five-years-old.”

He grinned and pretended he was going to drink it, then started to pour it into his beer. “Aren’t you going to finish your beer?” I squealed. I could not believe he’d leave a couple swallows of beer, much less pour cream into it. In the end, he put it in his coffee rather than waste it.

When his cream puff came we laughed. It was cantaloupe sized. Even he couldn’t eat it all. I ate every last bite of my coconut cake.

This hint for my husband to fill the S&P shakers didn’t work.

Header photo: Shakers waiting for me to fill them.

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Down the down staircase.

The downward path that any of the dementias take follows various routes, with stops and starts along the way. There are plateaus when it seems the diagnosis is a bad dream, when everything seems all right again. Normal.

Until the next minute or hour or day when the nightmare resumes.

Even though I often say — and truly believe — that my husband isn’t as bad off as most, that my caregiving tasks are easy compared to some, truth is, it’s a roller coaster ride that is not for sissies.

We’d been coasting along with mild ups and downs, a kiddie roller coaster, until one day three weeks ago. Peter and Nobby returned from a weekly nursing home outing with ever-faithful Bill. My husband came back so distressed and overwrought that it was as if had morphed into another person entirely. His mild-mannered self was gone, and in its place was a man I didn’t recognize. His face was different, his eyes were wild, his whole demeanor changed.

“That’s it. We’ll never go back there. Can’t go anymore,” he yelled as he paced. “They won’t let Nobby in any more.”

My worst fear came to mind. “Did Nobby knock someone down?” I asked. He’s a big dog, but as affable and lovable as a puppy. I envisioned him jumping on a frail old lady causing her to fall and break her hip.

“No, no, but they won’t want us anymore!” I continued questioning, but he couldn’t explain.

I contacted Bill to ask what had happened. He said Peter seemed “off,” very quiet, and he hadn’t wanted to go to their usual lunch. Nobby had been his usual friendly self,  no one was harmed, the visit had gone as well as it always does. Bill chuckled when I told him Peter thought he had gone to visit his mother. (Bill’s mother passed away twenty-some years ago.)

That day was a turning a point, a sharp turn in the steep, down staircase. I had hoped he’d magically snap back to the way he was, to the holding pattern he’d been in, but he hasn’t. This, then, is his new normal.

 

Nobby always watches Peter.

 

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Better to laugh

They came into the house chortling like twelve-year-old schoolboys. Peter’s laugh lines were working overtime and Bill, his longtime companion, could barely talk he was chuckling so.

“Good grief, what’s going on?” I asked.

Peter tried to answer, but gave up. He said Bill would have to tell me. “Show her your elbow,” Bill said, pulling at Peter’s sweatered left sleeve.

“No, tell her first,” Peter said, “then I’ll show her.” I couldn’t imagine what was coming.

They’d gone to one of Peter’s favorite restaurants for lunch. At the time, our area was under warning for damaging wind and hail. Schools had closed. Just as Peter opened the door, the wind grabbed it and smashed it into him. His elbow, when I finally got a look at it, had born the brunt — skin peeled back like paint on an old house and blood, lots of blood. The restaurant’s management was upset, of course, and offered to cover any medical expenses and pay for a new shirt. The bright blue butterfly bandage Bill applied to stop the bleeding was the only treatment necessary. Mother Nature should get the bill for a new shirt!

When Bill said he figured I wouldn’t let him take Peter out anymore, we all started laughing. The previous Wednesday, when he took Peter and Nobby for their weekly nursing home visit, through no fault of Bill’s, a resident threw a cup of tomato juice on Peter, thus ending the life of another shirt. And the week before that, another episode occurred that…well, um…will be the subject of another post, another time.

Of course the story of the murderous door wasn’t funny — it could have been way worse — but we laughed and laughed.

After Bill left, I cleaned the fairly large wound, about 3″ x 3″, applied a large dollop of antibiotic cream and a fresh bandage. Peter asked what had happened to his elbow.

For all the laughter and hubbub minutes before, I was gobsmacked that he didn’t remember. “A door tried to take you out,” I said. Later on, I asked if his elbow hurt. “No, why do you ask?” he said.

Laughter is often the only answer.
unknownHeader quote: Erma Bombeck

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The tip of the iceberg didn’t sink the Titanic.

Who would ever think that something as inconsequential as a manicure would be the tip of an iceberg? Somedays I look at my hands — never my best feature — in despair. Nails chipped and split, cuticles like the pithy strips inside an orange.

Lately, I haven’t had time to indulge myself, because during the hours I have help for Peter I have to squeeze in shopping, errands, or all-important time to get together with friends. Yet, I make time to attend to his fingernails. He can’t, or won’t, do it anymore. His nails are strong enough to, well, pull nails, and they’re very difficult to trim. I have him soak his hands in warm soapy water to make it easier on both of us, but he complains and wiggles, although I think he secretly likes it.

And I drag him to get his hair cut and beard trimmed. I’ve tried to do both, but failed. I schedule our appointments back-to-back for my convenience. It’s one less trip, but it does take away from that bit of time for myself. Such a small thing, an iceberg’s tip, but underneath…!

images-1As dementia — Alzheimer’s — continues its march, I know more and bigger icebergs lurk. I already have a list of potential problems that lie ahead. The only thing this caregiver can do is lookout for laughs — lifesavers — and go full speed ahead.

2016 National Society of Newspaper Columnists’ contest, second place, blog category.

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Header: A “berger bit” iceberg in Alaska, September 2006.

Sweet talk.

Valentine’s Day crept on me, but I decided not to rush out to buy a card for my husband. Instead we’d go to our favorite spot for coffee. Oh, yes, I did cut a big heart out of newspaper and put it in his chair this morning and, yes, I did leave a message on his little white board. He didn’t notice either of them.

When I suggested we go to Our Daily Bread, his eyes lit up. We walked so I could justify one of their beautifully decorated heart-shaped sugar cookies. The place was bustling, as always, and even at 9:30 we were too late to get Valentine cookies. Peter eyed a strawberry-studded chocolate gateau, but in the end, we settled on our favorite apple turnovers.

After repeating his usual questions several times — “any news from upstate? ” and “how’s the big guy?” — he wanted to know what he could say that wasn’t the same old thing.

“How about ‘Happy Valentine’s Day?'” I said.

“When is it?”

“Today.”

“I didn’t know,” he said. He patted my hand and shook his head.

“Oh well, this is better than a card anyway. Two apple turnovers and two coffees for only eight dollars and forty-six cents.”

“Cheaper than a card,” he said.

“You’re a cheap date,” I told him.

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2016 National Society of Newspaper Columnists’ contest, second place, blog category.

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Could be a whole lot worse!

Most of January, I was mired in gloom worthy of Charles Dickens’ Bleak House, and for no good reason really. We are fortunate to have good long-term care insurance, I have companion help for Peter, and house-cleaning help for me. Best of all, Leslie is close by to bolster me, and Carolynn cheerleads from 596 miles away.

Could be a whole lot worse.

A well-timed phone call jerked me right back to my senses last week. Several times a year, our insurance company nurses call to ask routine questions: “Does Mr. Clarke need help bathing himself? Does he need help brushing his teeth? Has Mr. Clarke had any falls lately? Does he need help toileting? Is he incontinent? Does he have a problem falling asleep or staying asleep?” I always answer no. When they ask him directly how he’s doing, he charms them with a cheery “So far, so good.”

Before she rang off the nurse asked for more detail about his days. Peter is way more forgetful than the last time she checked, I told her, and more confused generally. And no, he can’t really converse except with me or other family members. We try to fill in the blanks and make sense of what we think he wants to say.

But, Peter copes better than most. He doesn’t need nursing care — yet — and he still “lets the dog walk him twice a day.” His sense of humor is intact, and although he often wears me out with his silly jokes and continuous corny patter, he takes care of me in the only way he can. He makes me laugh.

A recent morning for instance.

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If not now, when?

I’d been begging him to get rid of the moth-eaten, raggedy wool sweater he wears all the time. I dug into his drawerful of English cardigans —”cardis” he calls them — and found a marine blue double knit one. “Maybe you’d like to wear this for a change,” I said when I handed it to him. I thought sure he’d recognize it as one his mum had sent more than forty-five years ago, but he didn’t. He’s never worn it, but he’s always said he would when he was an old man. If not now, when? I thought.

Darned if he didn’t put it on right away. I wasn’t surprised how perfect it looked with the blue tattersall shirt he was wearing. I spread praise thickly.

He looked in the mirror, tucked his chin in, puffed his chest out, and said in a rumbling Churchillian voice, “Hrmp hrmp, erm, yes, jolly good, yes, I say, yes, mmm….”

When I burst out laughing, he wrapped me in a hug and I asked myself, what in the bloody heck do I have to feel depressed about?


2016 National Society of Newspaper Columnists’ contest, second place, blog category.
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‘…my brain was a jumbled mess and I couldn’t remember what number comes after potato!’

My husband is —was — a math whiz. Dementia overloaded his brain more than ten years ago, but every now and then, it reboots.

screen-shot-2017-02-06-at-11-47-05-amThis puzzle showed up on-line a few days ago.  If you can solve this, you are a genius, it read. I showed it to Peter. “I’ll bet you can do it,” I said, “and you know I can’t!” I added. He laughed. He knows how absolutely hopeless I am at math. I left him to it, pencil in hand.

Within minutes he was done. When he tried to explain how he’d arrived at the correct answer, he lost me, not only because numbers muddle my brain as if it’s being whirled in a blender, but also because he can barely put sentences together any more.

I’d copied the two possible ways to solve it, but I didn’t even understand how to apply either solution. Here’s what Peter did:

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You are a genius!

Interestingly, he keeps a scrap of paper by his chair that shows the way he figures out how old he is. I’m not smart enough to understand that either. First, he looks at the newspaper to see what year it is: next to 2017 he writes 17 and underneath, 62; to the left, 1938. Simple subtraction, 2017 minus 1938 should tell him he’ll be 79 this month. (Even I can manage that!) But then he adds 17 and 62 to get 79, too. See, I don’t get that at all, but he does and that’s all that matters.

There are probably several geniuses among my followers who can solve the “genius” problem. I am in awe of you. But I’m more in awe of my husband who did it so quickly, yet he can’t remember where the dog’s leash is kept, where the salt and pepper live, nor how old he is.

2016 National Society of Newspaper Columnists’ contest, second place, blog category.

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Headline quote: Tara Sivec, USA Today best-selling author, Seduction and Snacks.
Header photo: Performance  Brain Training

‘A good time to laugh is any time there is.’

“Any news from upstate?” Peter asks. It’s dinnertime and that’s the question he repeats over and over during our meals.

“No,” I say.

We listen to the evening news while we eat, me grumbling at the goings-on in Washington, Peter listening carefully to the weather report.

“Any news from upstate?” he asks again.

I start to shake my head, but instead, decide to try a different response. “No,” I tell him, “but Leslie and Martin spent the weekend at the river.”

“Really? In this…?” he asks. He nods his head towards the fog outside, the rain-streaked window. “What did they do?”

I laugh. “We were there, too,” I say. I’d hoped he might remember the two days, the cozy fires, the good food, log-wrangling with Martin, Leslie and me laughing hysterically over nothing at all.

He shakes his head disgustedly, but recovers with his usual line, “Oh, well, that was a long time ago. I can’t even remember what I had for breakfast.”

I nod, laugh, frown.

Laughter in the face of reality is one of the finest sounds there is. In fact, a good time to laugh is any time there is.”  Linda Ellerbee


2016 National Society of Newspaper Columnists’ contest, second place, blog category.

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