Briefly.

My husband was a cyclist in his day, not a pro, but darned good even into his late sixties, before Alzheimer’s commandeered his brain. Now 81, he hasn’t ridden in years, so when I got a text message from his Tuesday helper that he’d ridden half a mile at level two in the fitness center, I whooped.

YAY!

Later that same evening there was a second text to tell me that the day had been a good day: “He told me he knew he lived there now and the place was okay. He had a clear moment while we had tea outside the cafe.”

With tea came clarity.

I’d waited one year and four days to hear those words. Some caregivers never hear them, so I count myself lucky.

Peter has seemed more settled in recent weeks, and although I know he doesn’t remember that day or that brief bit of conversation, the thought is tucked in there somewhere amidst those damnable amyloid plaques and neurofibrillary tangles.

His good day made mine.

Header: My May flowers flourish thanks to April showers.

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

 

Always laugh when you can.

Thunder woke me this morning. A grim start to an anniversary, although this isn’t an anniversary to celebrate, no. A year ago today I had Peter admitted to memory care. Although he hasn’t been able to remember the day, the month or the year for a long time, I think, if he could remember April 18, 2018 and if he could express himself, he would say it was the worst day of his life.

I do remember and I shudder, but I don’t dwell there.  That’s both good and bad, I suppose.

I’m glad to say that Peter is doing well, better than most, I think. The problems he had those final months at home—falling, getting lost, increasing confusion, hallucinations, anger— are gone. But cured? Of course not. Living apart from the heightened tension and stress at home as I tried to cope with our situation helped both of us enormously.

Settled in now, the staff and residents love him and his silly pranks and goofiness. At last week’s Prom Peter was, as he always has been, the life of the party.  He thanks me and hugs me the way he used to do every time I visit.

My husband’s single-minded determination to problem-solve and his innate sense of humor have carried him through these very rough twelve months. It’s as if he grits his teeth mentally and reckons with how his life is now. He rarely asks when he can go home, but when he does I redirect as best I can, then watch as he turns inside himself, furrows his brow and deals with the knowledge.  After a couple minutes he shakes his head, smiles sadly, and says, “Oh well.” And that’s it. He’s dealt with it.

Peter thrives in care as much as anyone who has a dementia can thrive. Perhaps he thrives too much! His entire adult life he weighed 145 pounds. He loved to boast he could still wear clothes he had when he was twenty. He’s now a fraction under 150 and he’s popped the buttons on his trousers and shirts!  My formerly skinny husband has love handles!

Over the past year I’ve posted about the tough times, and there were lots, but if I were to count, I think there were more light-hearted posts than not. I want to believe that.

Neither of us would have gotten through the year so well without laughter. If laughs were available in a pill, they might be a cure for dementia. 

[Elaine Eshbaugh, PhD, Associate Professor of Family Services & Gerontology at the University of Northern Iowa, writes a hugely helpful blog. Her April 15, 2019 post, What I think caregivers… need to know…”, was exactly what I needed to read this week. Do follow her!]

Header photo: This dogwood lightened my mood as I walked Nobby this morning after the rain.

2016 National Society of Newspaper Columnists’ contest finalist. 

‘Can’t repeat the past? Why of course you can!’

My high school prom in 1957 — in June or was it May? — is a foggy memory. I don’t even remember who I went with. But April 10, 2019 is a prom date I’ll never forget. I was a bystander at a prom last Wednesday that was memorable for so many reasons. There was fantastic food, live music, corsages, boutonnieres, a big crowd. Kings and Queens were crowned. Many of the prom-goers were in wheelchairs, and most of them forgot the fun and laughter even before the music faded.

That evening, Sigma Kappa sorority and The German Club of Virginia Tech sponsored The Great Gatsby Prom for residents of the facility where Peter lives. When I heard about the event just a day earlier, I dug out the green velvet jacket Peter made for himself years before I knew him. I found his orange and purple bow tie too. Carolynn, here for the week, helped wrestle him into his finery. Typical theatrics ensued as we convinced him to participate: What is a prom? Why do I have to go? I’ll just stay here. We held hands as I coaxed him along the corridor.

Black, gold and white balloons and streamers festooned the dining room, the ladies wore their best attire fancied up with beads and glitter, and the men went along with everything, much like they probably did for their high school proms. The staff were all dressed in 1920’s attire to go along with the Great Gatsby theme.

Didn’t take long for Peter to get revved up and charm the ladies. In his element, he flirted, he danced, he caroused, he was his silly, wacky self. Old pals who remember the Peter of days gone by would have been shocked to see him drinking not one, but two Cokes. Yes!

Carolynn and I giggled hysterically as he entertained his admirers, many of them sorority girls younger than our granddaughter. He teased and made faces and beamed ear-to-ear. I’d figured we’d stay to escort him back to his room, but he was having such a good time we snuck out. The hours for this prom were 6:30-7:30, no all-night after-prom activities for this crowd. By the end, Peter was still cavorting. He didn’t need me nagging him to leave as I used to do. He didn’t even need me at all and I was glad to know that.

As I watched the evening unfold, I realized I’d made the right choice, heartrending as it was, when I moved him into memory care a year ago.

Title quote: The Great Gatsby by F. Scott Fitzgerald.

2016 National Society of Newspaper Columnists’ contest finalist. 

Mama’s happy when she cries the blues.

Peter’s eyes sparkled, his foot tapped and his lips smiled when he heard the tinkling sounds of Jelly Roll Morton jivin’ on the piano. He recognized the music instantly and that just made my day.

I don’t cry easily, but my husband lit up when he recognized ol’ Jelly Roll and that light-fingered style he had. And I sniffled, no, I cried. I’d finally taken his music player—his Christmas gift—back to him loaded with his longtime jazz favorites from the 1920s .

Ma Rainey did her “thang” and belted out “Black Bottom Blues,” then Al Hirt laid on “Bourbon Street” and Jelly Roll must’ve plumb wore his fingers out all the way from “Doctor Jazz” to “Grandpa’s Spells,” some 18 cuts later.

I asked him if he knew the lyrics or the titles, but he laughed and shook his head no. “I remember the music though,” he said, nodding to the beat. When Louie Armstrong started warbling “High Society,” he attempted to sing along. His imitation of “Satchmo” was still as off key as ever and he bumbled the words as he always did, but he was happy.

Funny, one of his favorite CDs is “Jazz the World Forgot.” My husband may not remember much these days, but he hasn’t forgotten his passion for the sounds of the raucous, roaring twenties.

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

Don’t deal him out.

When I left Peter one afternoon, I stopped to chat with the wife of another resident. We compared notes, as we’ve done before, and agreed that the year just past, for both of us and our spouses, had been terrible. She’s a woman who tries to look on the bright side too, so we’ve shared laughs over the months as well.

I told her I’d just reintroduced Peter to cribbage and that it had been more successful than I expected. “He remembered enough about the game to play fairly well,” I told her. “I never could play very well, so he’s at my skill level now.” 

“Well then, what did you think about our husbands’ poker game last week?” 

“Poker? Peter doesn’t even know how to play!” I was astonished. At Christmas the family poker players drag him to Leslie and Martin’s kitchen table and coach him.

She explained that our husbands and another resident had played one afternoon. “They had beer, chips and dip, laughed and carried on as if they’d been pals for years. They seemed to know what they were doing.”

“Could they hear each other?” 

She shook her head and laughed. “Didn’t matter, they had a terrific time.” 

“That’s wonderful! I hadn’t heard about it, but you just made my day!” I drove home with a big smile on my face.

Ol’ Poker Face Pete looks like he’s ready to ‘fold.’

2016 National Society of Newspaper Columnists’ contest finalist. 

 
 
 
 
Header photo: freepik

‘Orange juice for the ear.’

This observation about the late Oliver Sacks’ book Musicophillia (2007) struck just the right note when I read it:

… music can animate people with Parkinson’s disease who cannot otherwise move, give words to stroke patients who cannot otherwise speak, and calm and organize people whose memories are ravaged by Alzheimer’s or amnesia.”

Before Thanksgiving last year, I mentioned to our grandson Miah that I’d been searching for a very simple device that would enable his granddad to hear his favorite music. A few weeks later, he posted an article on Facebook that explained  the positive effect of music on the brains of people with dementia. Carolynn saw our Facebook exchange and within few minutes she forwarded a link to me. She was excited. “I think this would work for Poppy,” she wrote.

Fifteen minutes later I was in The Alzheimer’s Store and, yes, she’d found the perfect solution. The Simple Music Player is a reinforced, sturdy little thing with the retro charm of the radio that sat on my nightstand when I was a teenager. Lift the lid to start the music, push the big black button to change to another song, and shut the lid to turn it off. It comes loaded with familiar 1940s big band sounds and songs. Plus, a USB cable is included so that the caregiver can add favorite music. And, I should add, it’s Made in England.

Before I went to bed that night, I’d ordered the player. A few days later it was on my doorstep. Quite honestly, I wanted to keep it! The sound is outstanding, it is very easy to use and, best of all, neither I.D. nor password are required to use it. But I did put it under the Christmas tree for my husband.

Unfortunately, I have yet to download Peter’s favorite old albums, but I’ve got his extensive list at the ready: Jazz that the world forgot, 1920’s classics; The best of Jelly-Roll Morton; Ma Rainey’s Black Bottom; Louis Armstrong, The Hot Fives; Absolutely the Best of the Blues; Count Basie One O’Clock Jump; Bessie Smith; Cab Calloway Forever Gold; Armstrong and King Oliverto name just a fraction of the hundreds in his collection.

Christmas night, I managed to entice Peter to dance to one of the oh-so-danceable songs. It was the first time in years that we’d “tripped the light fantastic.” Our intent was good, but our feet were laughably clumsy.


Be sure to turn sound up.

Music can lift us out of depression or move us to tears—it is a remedy, a tonic, orange juice for the ear. But for many of my neurological patients, music is even more—it can provide access, even when no medication can, to movement, to speech, to life. For them, music is not a luxury, but a necessity.” Oliver Sacks (1933-2015)

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

 

 

 

Today was the day.

He knew he knew me but still, he didn’t really know who I was. He couldn’t say my name. He couldn’t say what our relationship was. I wasn’t as shocked as I expected to be when it actually happened. I knew the day would come sooner or later.

Today was sooner rather than later.

Peter hasn’t been able to say our family’s names for some time — Carolynn, Leslie, Samantha, Jeremiah, Martin, Bill — though he recognizes them when he sees them or gazes, as he often does, at their pictures.“How are things in England these days?” he asked. Uh oh, I thought.

What I should have done is explain some little thing about the Brexit crisis. He wouldn’t have understood, but he would have listened, interested. But I said, “I don’t live in England, Peter. I’ve never lived in England.” His eyebrows shot up, and he shook his head as if to clear the cobwebs. His thoughts looped as he asked over and over how things were in England. Finally, leaning close, I asked, “Do you know who I am?”

He bluffed. “Course I do. I could never forget you!

“Mm-m, do you know my name, what we are to each other?”

He gazed into the distance as if the answers might be written in the mist outside. I said his first wife’s name and asked if he thought I was her. He shook his head, but he did ask where she was. I said I only knew she’d moved back to England years ago. “The two of you came here, to Virginia, in 1968,”  I said.

“Well where were you then?”

“In Arizona, getting ready to move to Virginia.” He shook his head again. I was sure he knew he knew me, but he couldn’t say my name. I turned it into a game. “Am I your sister? Your niece? Your grannie? Your mum?” He laughed at my silliness and said no to each question. Then, inspired, I said, “Peter and…J-o-o-o-o-o…?”

He grinned. “JUDY!” His exaggerated wink tried to tell me he knew my name all along.

He hugged me tight and we laughed together.

[The “today” in this post is actually yesterday. I wrote this late last night, but refined it today. Changing all the todays to yesterdays only works in the song.]

Header: Scene outside my window today.

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.