Aside

‘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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‘Peaks and valleys,’ he said.

We were an instant couple, Peter and I, when we met forty-some years ago. At the time, I was a struggling single mom with two young daughters to raise. “Peaks and valleys,” Peter would counsel when I fretted, “life is all peaks and valleys.”

I’ve thought about his mantra recently and wondered, would he even understand the meaning of the words now. As his dementia worsens the valleys are deeper and wider, the peaks, fewer.

A week ago, we teetered on the edge of an abyss.


The day started beautifully, definitely a “peak.” Soft warm breezes encouraged me to garden and Leslie came for lunch and cards. Perfect. Peter used her visit as an excuse to take his lunch to the basement where he’d watch t.v. Two hours later, when I yelled to tell him tea was ready, the silence below screamed. The basement was dark.

I dashed upstairs calling his name. Gone.

Gone!

He’d sneaked out while Leslie and I sat just outside. I use “sneaked” advisedly because he’s done it a few times. He has a “stealth” mode that allows him to slip away. Nobby, usually at his side, wasn’t with him because for the previous four days he hadn’t walked at all. His woeful puppy eyes told us his old arthritic knees ached.

Leslie took charge immediately, while I, heart-hammering and generally useless, attempted to follow her orders. She called the police, family, friends, told me to send photos of Peter to her, posted Facebook messages. With three photos on her phone, she sped off to nearby businesses — grocery, restaurants, bakery, wine shop, hairdresser. I stayed home to answer phone calls and texts, to be there in case he came back on his own. I called friends to be on the lookout and soon, unbidden, Peter’s carers, Karen, Bill and Mark, showed up to offer help and support.


The power of Facebook startled me, a hesitant user. Re-posts popped up quickly. Granddaughter Samantha, who lives in Washington, DC, has a friend with a niece who’s interning with our local EMT squad. Some four hours after I discovered he was gone, the young woman, thanks to her aunt’s post, spotted Peter on the steps of a church on the northern edge of town.

Meanwhile, son-in-law Martin, directed by Sam 267 miles away, went to collect Peter. Sam was still on the phone with her dad when Peter got into his car. “Want to talk to him?” Martin asked Sam.

She said yes, even knowing her Dad-Dad hates phones. “How you doin’, Dad-Dad?”

He chuckled. “Well, Luv, I thought I was going to get away,” he said, “but they caught me.” Hours walking in the hot sun, no hat, badly sunburned, no water,  tired and confused, he was still ready with a joke. Just after seven Martin brought him home. “I’m in trouble, aren’t I?” he said.

He hugged me so tightly I feared for my ribs. “No, not in trouble, but Steps. Will. Be. Taken,” I said, raising my left eyebrow to high-threat-warning level. He shook his head and gazed at the roomful of people without seeing them.

“Why did I do that, where did I go,” he asked over and over.

“If you don’t know why, then no one does,” I said, “and where you were is a mystery to all of us.”

Steps have been taken. Leslie installed door alarms that screech when the doors are opened and I’ve chosen a bracelet-style gps that will help me keep track of him. He’ll hate it.

In the meantime, we walk Nobby together. Peter doesn’t like it because he wants to be out in the neighborhood on his own with his dog. I don’t like it either because the half hour they walked was thirty minutes to myself, to read, write, or do nothing at all.

In that one afternoon, our lives changed more dramatically than the day, years ago, when the doctor diagnosed “early dementia.”

From now on the peaks will be ever smaller, the valleys, broader and more difficult to traverse.

Header photo: Victoria Falls, Zambia, September, 2005.
Bottom photo: Alaska Range, Mt. KcKinley in the distance, 2006.

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‘What do I want?’

Peter and I spent the morning of June 6 at the Commemoration of the Normandy Invasion at the National D-Day Memorial in Bedford, Virginia. We’ve visited many times in the sixteen years since it opened. We go because we remember D-Day. Well, I do. Peter doesn’t remember much anymore, but I’d hoped the grandeur of the place would spark a memory.

A soft breeze wafted around us as we walked up the alleé and through the immense granite Overlord Arch. Above us, Allied flags flapped in the wind. As we gazed out at the awe-inspiring depiction of a Normandy beach, a soldier fighting to gain the cliff, another sprawled in the sea, Peter said, “We’ve never been here before, have we?”

* * *

After the ceremony we went to Roanoke for lunch. When I drove into Montano’s parking lot, his eyes lit up. “I know where I am now,” he said. We were seated quickly at one of Theresa’s tables. After so many Montano’s lunches, she knows us.

She patted Peter on the shoulder. “You remember, we don’t have Guinness on tap anymore,” she said, apologizing.

He shook his head, and finally settled on another choice. When she returned with his beer, she said, “Ready to order? Too many decisions, I know.”

He looked at me. “What do I want?”

“Fish and chips.”

“Yes, that’s what I want.”

When Theresa brought our food, he asked me about the contents of the three little cups on his plate.

“Tartar sauce. Horseradish sauce. Malt vinegar,” I said, pointing to each. “You use malt vinegar. It goes on the fish and chips.”

He dipped his spoon into the tartar sauce. “Oh, that’s good,” he said. Once upon a time, he wouldn’t even have tasted tartar sauce. “Too sweet,” he would’ve said. He dipped his spoon in again. “I could eat it all.”

He wrinkled his nose at the horseradish sauce, but then, he picked up the container of vinegar, put it to his lips…and…

NO-O! Don’t drink the vinegar!” I yelped. Too late.

He shuddered. His eyes watered. “Bl-l-l-ech! Wasn’t supposed to drink it, was I?”  He laughed and choked at the same time.

I couldn’t help but laugh at the look on his face. “You’re supposed to sprinkle it on the fish and chips.”

He did “sprinkle” the remaining vinegar, but then, to add to my shock, he plastered the fish with tartar sauce. By that point, I guess I wouldn’t have been surprised if he’d licked the container clean.

We’re reflected in the granite Overlord Arch in Bedford.

 

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Header: Monument at front of National D-Day Memorial, Bedford, Virginia

Nobby didn’t do it!

Peter went with me to get my springtime supply of potting soil. I had to ask a Lowe’s employee to help us get it off the stack and onto a flat cart. Together, we managed to heft it into the car ourselves, but at home Peter insisted he wrestle the monster bag to the backyard himself.

Then, Friday, with only a few more plants to pot, I set myself up under the maple tree with trowel, pots, scoop and…where the heck was the potting soil? I looked in the gardening cupboard, the shed, the basement. Arrgh-h, was it that bag that made the garbage bin so heavy that morning? It had been very difficult to roll to the street and Peter was concerned the weight would be too much for the lifting mechanism on the truck.

“Do you know where the potting soil is?” I asked Peter, knowing he wouldn’t know what I was talking about.

“Potting soil? What’s that?”

“Big green bag, heavy, you lugged it around back for me couple weeks ago. Come help me, I’m probably looking right at it and can’t see it.”

We went to the shed and looked under and behind things. Nope. Storage cupboard? Nope. Basement? Nope. “If it was as heavy as you say I don’t think I could’ve carried it down here,” he said.

I groaned, sure it had been put into the blue bin that had already been collected. Peter often sneaks things into the garbage. We really couldn’t blame that, even jokingly, on Nobby.

I plonked down on the terrace steps, frustrated. In order to finish, I’d have to go get another bag of the stuff. But oh, wait, something bright green beside the steps caught my eye. OH!

“Peter, I found it,” I yelled. I pointed to the bag leaning against the wall. I’d practically stepped on it when I began my search.

He laughed. He hooted. His face turned red.

“I’m sorry! It’s my fault, not yours!” I said, laughing almost as much as he was.

Leslie arrived just then. What’s going on, she wanted to know.  Peter, still laughing, pointed to the very big, very green bag. “Mum tried to blame me…said I threw that away…I can’t even lift it….”

She laughed too, as only she can. Later, she suggested the episode was a post waiting to be written. I, like Peter, always do what Leslie says.

At least Nobby didn’t get the blame.

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Header: Peter weeds the herb garden.

Wuz Goldilocks here?

In recent months, Peter has been much sleeping later in the mornings, sleeping downstairs occasionally, getting up in the night to go to the bathroom and then going to another bedroom to finish the night.

Oh yes, I’m aware when this happens — Leslie calls it “using my mommy ears” — though I’m not necessarily wide awake.

In the wee hours one night I woke up and realized Peter wasn’t in bed and hadn’t been. The sheet on his side was cool and still smooth. I didn’t look at the clock, but I knew from the hush on the street outside that it was about about four. Just then the floor creaked. Peter was tiptoeing along the hall trying not to wake me.

When he opened the door, I asked where he’d been…as if he’d remember. “I just went to the toilet,” he said, climbing into bed.

“Um, no, you haven’t been here at all,” I said, but he was already asleep.

After sunrise I got up and headed downstairs for coffee. Whoops, what did I just see, I asked myself as I reached the top of the stairs?

I backed up and looked in Carolynn’s room. The bed was slightly mussed and looked as if someone had been sitting on it.  Then I peeked into Leslie’s room where the bedcovers were turned back, the pillow squashed. Peter’s slippers were placed neatly beside the bed and his winter jacket was hanging on the bedpost. “Hm-m,” I said.

Leslie’s bed was just right.

The coffeemaker’s drips woke my brain and I soon solved the mystery. The pillows on the sofa were piled up in a way that told me my husband had tried to sleep there using the cushions and his jacket for warmth. Upstairs, he’d first tried the bed in Carolynn’s room and decided it was too hard, but in Leslie’s room the bed was just right and he no longer needed his jacket for warmth.

When he finally came down, he sat in his chair — just right — and I gave him his coffee. I was tempted to offer him a bowl of porridge, but I kept that thought to myself. He doesn’t have a sense of humor in the mornings.


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Header: Carolynn’s bed, too hard.

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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