Cork, blown!

Individually, the silly, almost daily things we blame on the dog — Nobby did it — aren’t really worth mention: a china tea cup in the butter compartment; tiny potatoes tied up in a green newspaper bag and tucked in with the bread; Peter’s three nights in a row sleeping on the couch because he forgot to come to bed; him not only mowing the grass two days in a row, but three times in one day. All quickly forgotten by him, but I’m buried in what feels like wet sand.

Most Alzheimer’s caregivers know that “going with the flow” is often the best way to handle such things. But sooner or later, even the most patient of them — us — will blow a cork, a lid, a fuse, a gasket.

I am not a patient caregiver.

I’d sorted the edges of the 252-piece puzzle Carolynn brought to me, and put about half the frame together on the kitchen counter. The rest, I’d organized by colors on paper plates. Peter enjoys jigsaws and he’d placed several pieces while waiting for dinner one evening.

Next morning, I came downstairs, turned the coffeemaker on, filled Nobby’s bowls, sorted our daily rations of pills, then noticed — WHAT? — the puzzle had been cleared away, all the pieces were back in the box. The paper plates were stacked neatly, empty.

My lid hit the ceiling. I needed a new fuse. My gasket wanted replacing.

In the previous several weeks I’d warned, if he didn’t stop moving my “stuff,” I would wreck his towers of coins, even knowing that his need to organize helped him control his out-of-control brain. So that morning, sputtering like a kettle on the boil, I stomped down to his desk, took a deep breath, and raked my hands through his stacks of quarters.

I was furious, childish beyond reason. How absolutely infantile of me! If Peter noticed at all, he never said, and I’m sure he was quite content to re-stack the coins and make order out of the chaos I’d caused. That evening, I sorted puzzle pieces once more and started putting it together again. To be safe, I wrote “LEAVE THIS ALONE” on a paper plate.Thursday,  we browsed through a local thrift shop. From a table laden with jigsaw puzzles, Peter picked up a brilliantly colored 1500-piece one that would measure 33″ x 24″ when assembled. He debated buying it — too intricate, he wondered? In the end, he paid the 53 cents and brought it home. In the days since he has done little else but sort. By last evening, he had more than half of the outside in place, the rest of the edge pieces set aside, waiting.

Will I box the pieces up and put them away like he did to me? No.

Will I try to work the puzzle with him like we used to do? No. Togetherness is more than he can handle.

Will I slot a few pieces in when he’s not around? Darn right, I will.

Pretty French scene reminds me of our trip to Nice 12 years ago. Peter doesn’t remember, but I do.

 

Header: Kim McFarland painting of perplexed Westie with a ladybug on his nose.

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Wrinkles in time, smoothed.

Peter has been sleeping much later in the mornings, sometimes until ten or after. On the one hand, that gives me time to write or go for my morning walk, but on the other hand, I wait for him to get up so I can do laundry, tidy the bedroom, or maybe run an errand. While I’m glad to have extra time to myself, I’m also testy with him because he sleeps undisturbed while I wait to get my chores done.

Ironing, for instance.

Peter wears long-sleeved dress shirts every day and they need, if not ironing, then at least touch-ups. True, I’m the one who nags him to put his shirts into the hamper, while he insists they’re clean even when they’re so stiff they could walk to the laundry room. If he hasn’t spilled soup on the front, he says they’re fine.

I seldom have time, or more correctly, seldom have the inclination, to iron his shirts, or anything else, anymore. Recently, when he asked if he could help me, as he does several times a day, I suggested he iron shirts. And he did! He does a better job than I do, although he thought eight shirts were too many to do in one afternoon. Humph.

The next time he asked if he could help, I again suggested he iron shirts. Those shirts still hang, wrinkled, in the guest room closet. He doesn’t want to do them and I’ve decided to go on strike. He can no longer do most things around the house, but he can still use an iron and, well, he’s the one who wears the shirts. If he chooses not to iron them, then wrinkled they’ll be.

It isn’t really about the ironing, of course, it’s about all the other tasks that pile up like unmated socks. Another iceberg lurking.

If it were possible to smooth the “wrinkles in time” to squeeze more hours into a day, I’d get the iron out…or ask my husband to do it.

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Aside

Sort and organize, part two.

Several days ago I posted a list of ideas that could help dementia patients feel as if they had some control in their lives. In the post, I used Peter’s adaptations as examples.

Today, I have a new item to add. This one aimed at those for whom reorganizing the silverware drawer or separating buttons by color aren’t challenging enough.

  • Wrangle grocery carts into types—large, small, ‘kiddy cars’—in the cart corral at the grocery store!

After our shopping trip the other day, Peter unloaded our groceries into the back of the car, then walked off to return the cart. I started the engine, adjusted the mirrors, lowered the radio’s volume, checked my hair, and waited and waited and waited. Where was he?  The cart corral was only three spaces away.

I reversed slowly out of my slot and, whoa, there he was, sorting carts and fitting them together as if they were the high school band waiting to parade.

I tapped the horn. He looked up and waved to let me know he knew I was waiting. Really, the only thing I could do was laugh.

This is Peter’s idea of Organization. Photo, Eroha trollies, 26/6/11

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Header photo: Kroger’s on a Sunday morning

 

Right now is the right time.

My Peter, now more than ten years along dementia’s downward slope, is slipping faster. I try to ease the skid by finding activities to occupy him, to give him a sense of accomplishment. Many things he once did easily aren’t possible now. It has been a long time since he could cook anything, not even fried eggs or bubble and squeak. Sometimes he even forgets how to make a cup of tea.

I waited too long for the right time to introduce these “sort or organize” ideas I found online. But on his own, perhaps prompted by some brain tweak that Alzheimer’s patients experience, he’s been doing many of them for months, maybe years. I offer them here, for readers looking for in-home occupational therapy.


Sort or organize…

  • …nails, screws, and other hardware. Peter has long since sorted, by size and age, his collection of antique hammers and other old tools.
  • …nail polish and lipsticks, sorting by color, brand or on a scale of 1-10 by preference. Not bloody likely, he’d say to this one, but I might push him to tackle it.
  • …buttons, using muffin tins to sort by color, size or style. Not even the antique buttons my mother collected piqued his interest.
  • …coins, according to date, value or place of origin. Ah yes, he stacks coins, wraps others, and bands paper currency he brought home from our travels and his business trips to Europe and Japan.
  • …the pantry, arranging cans and jars by size, brand or contents. Unfortunately for me, he does this often. I want my pantry to be organized the way want it organized — tomato products together, vinegars and oils, all condiments, and so on. He likes everything lined up like soldiers, no matter their culinary purpose. (I’ve declared the pantry off limits, for all the good that does.)
  • …the silverware drawer, rearranging the order of the forks, spoons, and knives. Peter often reorganizes our two sets of everyday cutlery. He likes the two sets separate from each other, and I don’t give a hoot about that. I prefer all dinner forks in one compartment, all salad forks in another, likewise all soup spoons, all dessert spoons, and so on.
  • …playing cards into decks that match, or into suits within a deck, or by numbers. He’s been doing this for months, endlessly. He hates that my canasta decks are the same on the backs and tosses them aside because they don’t suit his orderly sensibilities.
  • M&Ms, using muffin tins to sort by color. Choose one color to eat. Haven’t tried this yet, but I have a feeling he’d eat all of them before they made it from bag to tin, all except the green ones, that is. “Green candy isn’t good,” he’d say.

Just a few years ago, Peter would’ve laughed at the thought of doing such silly activities. Now, they calm him, and give him a sense of purpose, in his increasingly purposeless world.

Header photo: Stacked coins in his closet.

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‘This high’ with no caffeine.

This morning, Peter and I had our annual back-to-back wellness check-ups, fasting check-ups, no caffeine, nothing to eat. Our stomachs growled menacingly.

For the first time in his life my husband has a “spare tire.” He weighed in at 145.5 pounds, up from a low of 128 a few years ago. (I’d have my other knee replaced if I were guaranteed another miraculous thirty-pound loss like the one, post surgery, in 2013.)

When the nurse asked my height, I answered 5′8″, but I think I’ve shrunk to less than that. When she asked Peter, he put his hand on top of his head and said, “This high.” She laughed and so did I. Then she listed three words for him to remember — “apple, penny, watch” — but he forgot all of them. I only remembered two!

When Doctor T bustled in, he asked Peter, first thing, if he was still walking his dog. “Oh yes, he walks me, twice a day,” he said, as he always does. I explained that they still visit nursing homes once a week. “Good, that’s good,” the doctor said. “Those old fellows must love you.”

“The old ladies love Peter and Nobby,” I said. “They both get their share of hugs and pats.”

“See, if you’d known that years ago, Mr. Clarke, you’d have had women swooning at your feet.” Peter has always had women swooning at his feet.

After our labs were finished, Peter asked where we were going next. “Home,” I said, although I was already plotting where to go for coffee and pastries. He started nudging me to the left like a Border Collie herding sheep. “What are you doing?” I asked, pushing towards my car on the right.

He laughed. “Silly me! I looked at that one and thought it was yours.” He pointed to the sleek black car next to my boxy blue one. Its license plate read C-L-A-R-K, while my plate describes my stern personality.

Later, Peter sipped his coffee and stared at the scrawl on the door across the alley. “I’m trying to figure out what that says.”

“Good luck.”

“Good luck?”

“No, I mean ‘good luck’ figuring out what it says!”

If the doctor had written a prescription for laughs prn, it would’ve already been filled by eleven this morning.

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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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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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