‘Who in the world am I?’ Alice asks.

“You’re not working a puzzle,” I said to Peter one day at lunch. “Have you finished already?” (He always does a Sudoku, Wordy Gurdy, or crossword; I always have my nose in a book.)

“A puzzle?” he asked. “Do you mean you?”

I laughed. “That’s good,” I said. “Haven’t heard that one before.”

Peter laughed too. “Neither have I.”

That little glimmer of the old Peter was a peak in an otherwise down day. Our laughs lately are a bit further between, but we milk the ones that come along.

This 500-piece “Alice in Wonderland” jigsaw puzzle was a family Christmas gift several years ago. Over the past weeks, Peter put it together again, with more than a little help from Samantha, Leslie and Martin. I’ve often thought Peter’s dementia…Alzheimer’s…must make his head feel jumbled like Alice’s: “I wonder if I’ve been changed in the night? Let me think. Was I the same when I got up this morning? I almost think I can remember feeling a little different. But if I’m not the same, the next question is, ‘Who in the world am I?’ Ah, that’s the great puzzle!”

Indeed.

 

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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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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.

‘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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Cure for common cold!

On New Year’s Eve, with no bubbly in sight, my husband started hiccuping, or hiccoughing as he would spell it. Uh oh, I thought, he’s getting a cold.

I dosed him with vitamin C in the form of Clementines, cups of sweet, hot tea, and homemade elderberry cough syrup. He grimaced and muttered at all my attempts, so I gave up and went to bed. Later, I was awakened from a sound sleep by a cacaphonus hiccup accompanied by an echoing, hacking cough. “Arrrrgh-h-h-h!” I groaned.

“Sorry,” he whispered. He always attempts to be very quiet so as not to wake me. He twisted and yanked at the covers and  finally settled onto his side. “HUH-HUHH-CK,” he said. “Sorry.”

He was asleep instantly, but the staccato sounds continued. I pulled my pillow over my head. “Try holding your breath.”

“Why?”

“To stop your hiccups,” I said, though from experience I knew it would not.

He didn’t even try. The bursts continued until I suggested that he might sleep better if he went into the other bedroom.

“Why would I sleep better there?”

“Because I won’t poke you all night!”

He clomped down the hall and I drifted to sleep. I knew I hadn’t handled that well, but, I rationalized, no one dies from hiccups.

Later still, Peter got up to use the bathroom, but forgot he was sleeping in the guest room. He returned to our bed, grabbed for the covers but instead got my arm which I’d flung across to his side. Both of us yelped. “What are you doing?” I said.

“Coming back to bed…I thought you were sleeping in the other room…”

“No, you were!” He plodded back down the hall.

Sunday morning, froggy-voiced, weepy-eyed, drippy-nosed, and still hiccuping, he croaked, “Good morning.” His voice was in the basement.

“How do you feel?” I asked. He patted himself all over and grinned. I rolled my eyes. That’s always his answer to my how-do-you-feel question.

His symptoms continue to this moment. He’s in the next room watching television, hacking and sniffling and still hiccuping endlessly. When I asked how his cold was this morning, he shook his head and said indignantly, “Cold? I don’t have a cold. Sneezing a bit, that’s all.” He coughed hard enough to untie his shoes and knock his socks off.

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And that, Readers, is how I discovered the cure for the common cold, at least at our house. Dementia, dementia,  that’s the cure. Peter insists he is not sick, does not have a cold or a cough or a hiccough. Since he doesn’t have a cold, there’s nothing for me to catch.

Knocks the achoo right out of the Kleenex™ factory, doesn’t it?

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

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Say a lot in few words.

When our friends Jerry and Shelia visited, Shelia took me aside to  ask, “Does Pete worry about anything?”

“No,” I said.

She smiled. “He doesn’t have to, you take care of everything. He has no worries.”

I nodded and she gave me a hug. There was nothing more to say, and for effervescent, talkative Shelia, that in itself was saying a lot.

 

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

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Remember? November.

Lately, my husband’s downhill run has gotten steeper, faster. When we used to bicycle together, we both preferred climbing hills to zooming down them. The  inherent thrill of a downhill scared both of us. That’s still true, though neither of us bikes anymore, and we don’t really talk about his descent. I can’t imagine how difficult it is for him although he still uses his “braking” mechanism: corny jokes and silly laughs.

We eked out a chuckle the other day. The doorbell rang. As usual Peter wouldn’t answer it though he made sure I’d heard it. A young man stood on the step holding a gorgeous bouquet. A bright beautiful cheery surprise after a trying few weeks.

img_4348Peter was working on the daily sudoku. I walked in holding the flowers. When he looked up his eyes popped, his mouth fell open, and the ruddy color drained from his cheeks. He glanced quickly at the date at the top of the newspaper page. “November,” he said. “That’s not you…is it?”

“Not me what? My birthday? No.”

“Are they for me?”

“No-o,” I laughed, “for me, from Carolynn and Robin. November is ‘Caregivers’ Month,'” I said. He didn’t question that. He doesn’t recognize that I’m his caregiver, and insists he doesn’t need one.

I put the flowers on the kitchen table. At dinner that evening he studied them. “Have those been there all along? You know, for months and months?”

“No, they came this morning.”

“Did I know that.”

I nodded.

Minutes later he asked again, then again, and again.

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

Another good thing.

Periodically, over several years writing this blog, I’ve posted about the occasional “good things” that are a part of our dementia journey, my husband’s and mine. Another became apparent two days ago.

In addition to being totally flattened by the outcome of the presidential election, I was steamrolled by an intestinal bug. As we sat at the dinner table Friday evening, Peter started making silly faces at me. Apparently I was lost, thinking dark thoughts while waiting for him to finish his pork barbecue and cole slaw. It hadn’t taken me long to eat half a baked potato.

When he finally got my attention he asked, “What’s wrong?”

I’m sure I sighed. “Just thinking about the election,” I said.

He nodded. “What will happen?” he asked.

“I dunno’.” Another sigh.

“Do you think he’ll win?”‘

screen-shot-2016-11-13-at-1-21-34-pmWhat? Wait! Really? Admittedly, my English husband never got his U.S. citizenship, has never voted here, but didn’t he understand the election was over?  He did not. All my ranting and carrying on in recent months, the enormous photo of the president-elect on the front page Wednesday morning, the endless news reports I’d watched, us watching Secretary Clinton’s concession speech together, none of that had soaked in?

But see, that’s a good thing. He doesn’t remember while I wish I couldn’t.

 

The National Society of Newspaper Columnists contest winner, 2016 —
online, blog, & monthly under 100,000 unique visitors category.

 

Apples and pears…stairs.

Peter looked at the lunch I was fixing for myself, my usual apple, chunk of Cheddar cheese, glass of milk. “Where did you get the apple?” he asked.

I pointed to the old wooden bowl that has always occupied our kitchen, that is always filled with fruit, and the occasional veg.

“Oh, I didn’t know that was there.” He picked out a piece of fruit, came back to the sink and turned on the water.

“That’s a pear,” I said as he washed it off.

Instantly, he collapsed laughing, his face as red as the apple’s cheeks, eyes twinkling. He hugged me. “I know it’s a pear, silly. I’m not that far gone.” I laughed with him and savored the hug.

That far gone, no, but he is more and more confused by the day, less and less able to find words or remember the simplest things. Still, I was grateful for the moment, the laugh, and the hug!

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Fruit with acorn squash.

The National Society of Newspaper Columnists contest winner, 2016 —
online, blog, & monthly under 100,000 unique visitors category.