Two points for a pair.

Sir John Suckling invented cribbage in early 1600s England. The game, still popular in pubs, is played with one deck of cards, a cribbage board and colored pegs with which to keep score.

Cribbage is somewhat complicated, but even more than the game itself, the odd terms and conventions confuse beginners. This isn’t surprising considering that the country of origin gives its villages such whimsical names as Pucklechurch, Nether Wallop and Great Snoring. Cribbage terms—his Nob, box, the crib, right Jack and Muggins—confuse as well.  A Muggins, for example, is called when a player doesn’t calculate her score correctly— the difference in points is awarded to the opponent. Good thing for me we’ve never followed that rule.

Peter and I used to play a lot of cribbage. He teased relentlessly when I forgot whose turn it was to play after a “go” or whose turn to cut the cards or, for that matter, even to remember when to cut the cards. In my never ending attempt to keep him engaged now, I wondered if he would try to play again. He surprised me.

Without going further into the myriad details and quirks of the game—this isn’t meant to instruct after all—I’ll just say that Peter plays way better than I thought he would. He remembers to offer the dealer, me, a chance cut the deck and to cut for the “turn-up,” while I remember which direction to peg. He never remembers which color is his and often—on purpose I’m sure—moves my red peg ahead if he and his blue peg are behind.

At first he didn’t seem to remember that a hand with four ten-count cards, a five, and a five turned up was an “even ‘doz,” his words for 12 points. But when I used the phrase I saw the tiniest spark in his eyes that said, oh-h, yeseven ‘doz

Mickey M  kibitzes.

When I forget to add extra points for a hand that is all the same suit (four) or that also matches the turn up suit (five) Peter reminds me with a sly look. I never have been able to remember that when “his Nob” is turned up the dealer gets two points.

He’s remembered the custom to knock sharply on the table to signal either that he can’t play or doesn’t want to cut. Another niggly convention I seldom recall.

It has worked out that whenever we play one of us remembers what the other forgets. Peg two points for the pair we are!

One day I suggested we play Rummy for a change. Nearly every hand, Peter forgot he needed to lay down at least a run of three or three of a kind. It confuses him when I remind him that he can draw from the discard pile if he wants a certain card and is able to play it with something in his hand. I’d just discarded a queen when he asked, “Can I pick that Queen up?”

“Yes, but you have to play her with at least two other Queens, or the King and Jack of hearts.”

He studied his hand then, with a flourish, spread four Queens and three tens across the table.  “OUT!” he said.

I sputtered. “You fooled me again, you cheeky bugger.”

He loves to make me laugh and I love that he still tries.

Header: Peter and Nobby are featured on cards we use.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

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. 

 

How lovely are thy branches?

The Christmas morning clatter—save the boxes, keep the ribbon, recycle the tissue, read the directions, where’s the receipt, the vac is clogged—is a week in the past. As I write, the new year is just hours away.  I can’t say I’m sorry to see the old one out.

This dwindling year has been an annus horribilis, as Queen Elizabeth II defined her 1992. She referred to her children’s marital follies and questionable clandestine issues, as well as the costly fire in Windsor Castle, one of her favorites.

Even though this has been an awful year for the Clarke family, we’ve found bright spots to keep us laughing. The house didn’t burn down either.

One of Peter’s new helpers, fascinated by his natural affinity with children, observed him interacting with a little boy. They stood on the fringe of a crowd waiting to see the Nutcracker ballet. I wasn’t there but I’m sure my husband’s eyes twinkled while he made silly faces and crouched to the two-year-old’s eye level. More than once, the boy announced loudly to anyone else in range that this, pointing to Peter, was his New Best Friend.

When I heard the story I smiled in spite of myself and my fretting.

For months I’d wondered how, or if, I would cope, how Peter would do, how would we all manage during the holidays. But, miraculously, my husband had settled into his new “digs” and no longer asked, “Is this my room?” every time I led him inside.

With a lot of propping up from family and friends, I spun through Christmas with more good cheer than I’d thought I could muster. I dashed and twirled and muddled, but in many ways, the week was actually one of the best we’ve ever had. The eight of us kept him busy with meals and snacks, card games, walks, movies, billiards, and chatter. Not that Peter talked much, but he smiled, chuckling, as he listened. If he had been able to channel my dad, my husband might have said, “Well, someone has to listen.”

Header: In 2017, Peter lifted a dug-up pine to bring home with help from Leslie who wore red and white striped camouflage.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

The door doesn’t buzz for me.

This wasn’t a stick-of-butter-in-July-sun meltdown. No, it was more like a snowman-in-shade-at-34°F.  It had been lurking for several weeks. Things, little things, had begun to pile up when another snag with our long term insurance company turned me into a weepy, hand-wringing mess.

I don’t cry easily or often, but that day my eyes flooded as I stried to decipher the latest problem. As far as trying to deal with this particular issue, I’d bottomed out. I was doubly upset because I knew had to ask for help. For most people, I think, it is difficult to seek help from family or from anyone else for that matter, or even admit to needing it.

Leslie,  Martin and I were at their river place for the weekend. Les knew something was up and asked several times Friday evening if I wanted to talk. I stalled. “Nope, not yet, not now, not this evening, maybe tomorrow,” I said. But it was Sunday morning before I found my voice. I’d planned to leave by early afternoon to visit Peter, so if I were going to talk, it had to be then. “I’ve lost myself” I think I said, or maybe, more accurately, “I’m lost.”

“You. Are. Not. Getting. Alzheimer’s, Mom. You. Are. Fine.” Leslie reacted as she always does when I joke that I’ll probably have to move in with Peter soon.

“No-o, I know,” I said. “I am forgetful and addled a lot of the time these days, but this has been a really terrible year. The stress has finally gotten to me.”

“It has been terrible,” she agreed. And I thought, awful not just for me trying to bear up, or for Peter trying to understand, but for the rest of the family too, especially Leslie and Carolynn. They’re being brave for me. And strong.

I cringe when friends say how well I handle our situation, because a lot of the time I’m coming unwound. As always, utter panic grips me when I’m faced with bills to pay, numbers to compute, or when anything to do with financial matters smacks me upside the head. I’ve always fallen back on the excuse that I don’t do numbers. I do words.

I have no need to fret, but still I do. Luckily, we have good long term care insurance coverage, but unluckily, the company has penalized me for their own ineptitude more months than not for the seven years I’ve filed claims. Last summer, to deal with worsening, inexcusable treatment, I did what I do best: I wrote a letter and sent it to the company’s CEO. In detail and with exhibits, I described the hurdles I’d had to jump to get reimbursed. That letter got results and a phone call within hours. And within two days the nearly 12 thousand dollars owed were deposited to my account. For nearly six months there were no further hassles. Then it started again, and with other niggly things piled on too, the weight of a year’s worth of anguish bore down.

Slowly, but steadily, I began to melt

Leslie rolled her eyes, not at my fragile state, but because I hadn’t mentioned the issues sooner. “Mo-om, this is something I, we, can help you with. You don’t have to do this on your own. You’ve got enough on your plate!” She was right of course.

Well, now that I’ve exposed my distress here, I realize, once again, I shouldn’t not ask for help. Peter is doing as well as can be expected and I am fine as my daughter reminds everytime I buckle, 

When I left Peter yesterday and walked toward the door into the lobby, the alarm didn’t buzz. I punched in the code anyway. Nothing. I tried again then started to laugh at myself. The alarm didn’t go off because I have no ankle band to trigger it. I can just open the door and leave. Hm, not so funny after all.

Header: Snow storm Banff, British Columbia, August 29, 2010.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Better than a dozen roses.

The weekend was perfect for so many reasons. First, Leslie orchestrated a tea party Saturday on the porch at the end of the corridor where Peter lives. Grandson Miah was the surprise guest. What a treat all ’round.

Then, on Sunday, I organized a walk in a favorite park for Peter, Nobby and me. My husband actually remembered having been there, “Once,” he said. I told him we’d been there many times over the years.  “Many times?!” he asked with raised eyebrow. He shook his head. Nobby remembered too, romping as if he were still a puppy instead of an old fellow of ten.

As we meandered back to the car, Peter lagged behind. I kept glancing over my shoulder to make sure he was following — he has a history of getting lost or hiding to scare me. When he caught up, he held up a bouquet of maple leaves. “Would you like to have these?” he asked. His eyes twinkled and he had sweetest smile.

Would I ever!” Thank you,” I said and took his hand, something he usually hates. He actually leaned in to kiss me but knocked both of our caps askew. A laugh, a kiss and a bouquet on a beautiful orange and red afternoon. Better than a dozen roses any day.

I took the scenic route back. Peter laughed when I said I thought we were lost. “You never get lost,” he said, and indeed I don’t and I wasn’t lost then. Then I told him I was more worried about being low on gas. That really made him laugh because he remembered how much I hate to pump gas.

When I opened the door to his room he looked shocked. The space was unusually tidy and the bright potted mum in the window glowed in the sunshine. “Is this where I live now?” he asked. I nodded. “Good!” he said. He took his jacket off, tossed it on his bed, and gave me a hug.

I tuned his tv to a soccer match, parked him in his chair, and headed home to put my fanciful bouquet in water and reflect on the glorious autumn weekend.

Outside looking in, Nobby seems to approve my maple syrup “vase” and fetching bouquet.

 

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. 

Right or wrong? Left or right? Here or there?

Thoughts about my ability to live in this new world where I’m practicing to be a widow rattle around in my head like stray coins clanking in the clothes dryer.

When will I, or will I ever, sleep on the other side of the bed. When will I, or will I ever, stop walking around the bed on my middle-of-the night treks to the bathroom, when I could just roll out the left side?

Will I ever sit on the other side of the kitchen table where Peter always sat?

Will I ever be able to clear the cedar closet of the suits he wore to work (once he realized he had to wear a suit to work) or the Burberry all-weather coat he never ever wore, or the cowboy boots we spent hours shopping for in Santa Fe and that were too nice to wear?

And will I ever stop being his caregiver?

The answer to all the above is, probably not. Anyway, Peter isn’t gone, he’s just removed from the life we lived together.

It just wouldn’t be right to sleep on the left side of our bed, or to change my path to the bathroom, or to sit on the opposite side of the kitchen table. And now, even though he’s in a care facility with round-the-clock coverage, his care really is still in my hands. Anyone in care or in hospital needs an advocate because the carers, the nurses, the aides can’t be everywhere, every time, all the time.

But that’s neither here nor there.

I have no choice but to be Peter’s caregiver as long as he lives—or as long as I do—and I wouldn’t have it any other way. I know, if our positions were reversed, he’d take care of me. Oh, he wouldn’t bring me tea and he wouldn’t fluff my pillow, but he would make me laugh.

I’ve learned from my husband how to laugh at myself and life and him, always him.

 

2016 National Society of Newspaper Columnists’ contest finalist. 

‘Aha!’ she said.

Anyone who really knows my husband knows that he has a thing for Mickey Mouse. His obsession stemmed from an outburst nearly 50 years ago when he was a young engineer from England—the great European “brain drain” he said—hired to work for then almighty General Electric. He’d established his quirky personality early on, so he thought nothing of going to his first management meeting wearing an open shirt, no jacket, no tie. He was told in no uncertain terms that he would, hence forth, dress appropriately—necktie, jacket.

The legend is, he returned to his cubicle, slammed down his GE-issue leatherette binder and bellowed, “This is a bloody ‘Mickey Mouse’ outfit.” His colleagues, many of them young hires from Europe too, ran with that. Someone left a Mickey Mouse card on his desk the next morning before he arrived. Just. The. Beginning.

His collection grew to hoarder proportions, especially after we moved to this house which has a tiny room he claimed. At least I could shut the door to keep the big-eared rodents contained.

Last April, in order to make his new new residence more homey — “homelier” his English friends would say — I put  family photos and  English memorabilia around. Wrong. He hid most of the photos, tore some to bits and generally stripped his room of anything personal.

Lately he’s had a lot of way-down days. But during one visit two weeks ago I noticed several female residents had baby dolls to cuddle. Aha! Mickey Mouse could help. Yes!

A plush Mickey Mouse, about the size of a six-month-old infant, was in Peter’s collection. I snuck the little guy into his room when he wasn’t looking and tucked baby M under the bed covers. The following day I asked about the suspicious lump. Without a word, Peter adjusted the covers so I could see.

Every day since I’ve taken some small thing from the Mickey archives—a simple puzzle, a magnet, the new Life magazine’s celebration of Mr. M’s 90th birthday—and left them for Peter to find later.

During my Sunday visit I snuggled Mickey on my lap as if he were a “real” baby. Peter’s eyes twinkled. “He’ll be all grown up soon,” he said. shaking his head.

I played along. “Yes-s, he’ll go away to college, he’ll meet a girl….” What could we do but laugh at our own silliness?

Header: Mickey snug in Peter’s bed.

2016 National Society of Newspaper Columnists’ contest finalist. 

New broom sweeps even better.

Peter clears the litter from the porch.

A nurse sat at the end of the hall when I approached my husband’s room yesterday. “Peter’s outside,” she said as she walked toward me. “He’s had a bad morning…very out of sorts….”

I held up the new broom I’d brought. “He was so thrilled to be able to sweep up grass the other day,” I said, “but he complained he needed a bigger broom. This ought to do it.” She nodded her head and said he’d told everyone that he got to sweep.

She added that she’d just given him his morning beer. I suggested tactfully that a cup of tea usually works better when he’s upset. “Beer with his lunch would be a better idea,” I said. She went off to change the orders—PBR with lunch, Guinness after dinner.

Outside, I saw him at the far end of the garden. When I yelled his name he looked up and laughed. “What are you doing here?” he asked, trotting in my direction. I brandished the new broom. “What’s that?” he  asked.

“You said you needed a bigger broom.” He grinned as if it were the best present ever. “This space really needs to be swept,” I said, as I nudged him toward the porch where we often sit.

Well, that’s all it took! He went right to work sweeping leaves and twigs off the cement and even whisking the seat cushions clean. He also managed to polish off his beer and the coffee I’d brought, before he tracked along the sidewalk with that bright red broom. He was in a much happier mood when I left for my dentist appointment, and so was I.

This morning I learned that Peter’s down mood had returned in the afternoon. Again he asked over and over why he was there? When I got home from the dentist, probably about the same time he had the second meltdown, I looked around at the mess “Florence” had made and wondered how I’d cope on my own without my champion sweeper and all that autumn brings. But my thoughts are selfish compared to those my husband is trying to sort out in his fractured mind.

 

Header: Bittersweet is lush this year.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Old broom sweeps clean enough.

For several days last week Peter was in a real funk or “gray space” as Elaine Eshbaugh, PhD explains in “Sitting in the gray in dementialand.”  My husband would not be, did not want to be, soothed. Furthermore he didn’t want to be “there,” although he wasn’t sure where “there” was. “If you like it so much here you should move in and I’ll find someplace to go,” he snarled. The smiling granddad I wrote about here had vanished “into the gray.”

No caregiver who has made the heart-wrenching decision to put a loved one in a nursing home’s memory care unit ever wants to hear, I want to go home. All I could offer was, “I know you don’t want to be here. I don’t want you to be here either.” At his murderous glance I added,”But I can’t take care of you at home any more. This is the best place for you, the best place around.”

Then I made him a cup of his favorite Typhoo tea sent from England by a longtime friend.

Today was different.

When I tapped on his door about 10:30 this morning he had his winter jacket on. “I’m just leaving,” he said. When I asked where he was going, he admitted he didn’t know, but pointed out the window. “Just look at that,” he said. The sidewalk in the garden was grass-covered from recent mowing job.

“You want to sweep that up, don’t you?” I asked

He nodded. “I don’t have a broom though.”

Well, that I could fix. I asked a nurse if there was a broom I could use. She found one and out we went, Peter with the broom, me carrying his wastebasket. I fashioned a piece of cardboard into a make-do dustpan while he swept. He grumbled about needing a bigger broom and added that he should get paid. I laughed and he did too. Around the other side he pointed at the padlocked gate near the gazebo. He wanted to know if anyone used the gate. I don’t think so, I told him. As if he were a mischievous ten-year-oid, he swept a little pile of leaves and grass under the gate with a flourish. Maybe you had to be there, but we thought it was very funny.

Not so very long ago I complained about him sweeping our terrace constantly, even though I understood. He needed something to do, to be useful. Today I was overjoyed to see him so happy…doing something…being useful.

It’s the little things.

 

Elaine Eshbaugh, PhD is an associate professor of Gerontology and Family Studies at Iowa State University. Her blog, “Welcome to Dementialand, Living, Loving, and Laughing through Alzheimer’s and related Dementias” offers helpful advice laced with her own brand of humor.

Header photo: Lonely little petunia in a green tomato patch.

 

2016 National Society of Newspaper Columnists’ contest finalist.