After words.

My husband was the protagonist in “Dementia isn’t funny.” He was also the reason there were so many laughs throughout our near 40 year marriage; in fact, he taught me how to laugh.

During these now seven months since Peter’s passing, I’ve filed laughable moments in my mind to remember to tell him when I visit…

    …There was message from a medical equipment supplier four weeks after his death that a hospital bed would be delivered to his room that day…

  …In October, I found a package on the doorstep with the special shoes for diabetics that I’d ordered in July…

    …One day I had a call from the facility where he’d lived. A possible carer had been found at last. Did I want to interview her?

  If he were here and if I could tell him face to face, he would grumble, “Too little, too late.” Bittersweet, but we would’ve laughed nevertheless.

Peter would have loved the Celebration of Life we hosted. It was a spectacular late September day. Friends old and new gathered to raise a toast and share stories. Several of his General Electric colleagues mentioned pranks I’d certainly never heard before! We laughed through tears.

I’ve put off writing this final post while mulling over whether to start a new blog. A number of readers have prodded me to continue, but I question myself. Am I up for it mentally? Do I really have anything left to say? What’s my angle? My thoughts are erratic, as random as butterflies in a patch of goldenrod. Even though I haven’t yet answered my questions nor calmed those butterflies, I do intend to carry on.

Header photo: Sunset on the Sea of Cortez, Baja California, Mexico, 2006

 

The final chapter

On August 25, 2021, I began writing the post below. I edited, tweaked and revised 45 times over the next ten days! “The final chapter” was finally ready to post September 3. Only I never published it! I’m not sure why, but I think it had something to do with a combination of computer hiccups and my wobbly mind. I did email it to those followers whose addresses I knew. Today, I post it here—edited slightly from the original—to bring all readers up to date six months after the fact.

September 3, 2021 – On July 20 I published “Sunday was a yellow jersey day.” I was still on a high after enjoying the final afternoon of the Tour de France with Peter. He was the most present, most aware, the cheeriest he had been in a very long time. He smiled, he laughed, he frowned at my silly jokes and he grinned when I put his various medals around his neck and plopped his worn yellow cycling cap on his head.

That was the last good day.

Less than four weeks later he took a steep downward skid. In the wee hours of Sunday, August 15, my husband passed away.

The suddenness, the sharpness of his decline was stunning, not only to me and the family, but to the staff at the facility where he’d lived for three and a half years. 

Since then anytime, I try to do the simplest thing, I feel as if I’m spinning on an amusement park ride gone rogue. I sent a note to a friend but addressed it to myself. It came back to me several day later. One morning I took careful notes when the bank cashier called with a question. I found the information she requested, but forgot what I was supposed to do with it. When I called back she realized kindly talked me through the process.

In the week following Peter’s death, Leslie and Carolynn were my rocks, sons-in-law Martin and Bill the silent helpers. Our adult grandchildren, Samantha and Jeremiah, and their partners added a certain lightness to the days.

There have been a lot of find-the-funny moments in these few weeks; some bordered on hysteria. My practical, no-nonsense mother preached laughter and smiles instead of tears and scowls. To this day I seldom cry—sometimes I wish I could. 

I’m planning a Celebration of Life in Peter’s memory in September [2021]. That keeps me engaged, obsessively so. The venue is arranged as are the food and beer, lists made, the announcement, sent (not without technical hitches), photos sorted for display, I have an idea what I’ll say to get the exchange of memories started…I even know what I’ll wear.

But when the party ends, when everyone has gone, what then? A friend who has been through the same wringer suggested I may not be slammed with grief as severely as might be because the goodbye was truly long—Peter was diagnosed with possible Alzheimer’s disease in 2003. That changed to probable within the next couple of years. Soon there was no denying, though I did, that he was declining steadily. During is last years his memory was shot. He knew us, and smiled when he saw us, but he didn’t know our names. 

Me, I choose to remember the good times—there were so many—and I’ll laugh again at those memories.

Header photo: Our neighbors Judy and Jeff brought an armload of glorious sunflowers to cheer all of us.

 

One year, eleven days hug-to-hug!

On Wednesday March 24, 2021, my fifty-three week, five-day wait to hug my husband ended. The look on Peter’s face told me all I needed to know. Carolynn, here for a week’s visit, went with me. She’d been waiting for a hug from her Poppy for the same 376 days because she was with me last year, the day before the everything closed down due to Covid restrictions.

A lot has changed in Peter’s year. I won’t delve into all that in this post. The fact that visitors could come into the home and into residents’ rooms was reason to cheer. He’d had another haircut and beard trim, only his second in 12 months—he always looks decades younger once his hair is trimmed up. He was wearing clothes that fit after several months of shopping for him without really knowing what size my formerly “slim fit” husband was.

I took him a thermos of tea and a cookie, a treat I thought. The cookie went down quickly, but he wrinkled his nose at the tea. I made it the way he’s always liked it, strong and dark, splash of milk, no sugar. He didn’t drink it.

For the time being, visitors are allowed 30 minutes. Not long enough for us, but long enough for Peter. After about 15 minutes he curled up on his bed and went to sleep!

Laughs aren’t always funny.

Writing in the time of Covid has been tough. My mind is as scattered as the wintery mix that bounced on my windowsill all day. It has been so long since I posted here that I struggled to remember how to sign on!

The past several weeks were fraught. Calls from the facility where Peter lives rattled me. He’s become disruptive, combative, with staff and residents alike. This is not the man I married 39 years ago. No, this is a man who has lost his links to the outside world as have so many others imprisoned by both the Covid pandemic and the effects of dementia.

Prior to the March shutdown, Peter’s companion Mark took him for outings several times a week. I visited at least four afternoons. We’d play dominoes, watch sports on t.v. or walk outside. Sometimes we’d go for a drive or an easy hike and we celebrated holidays and birthdays with Leslie and Martin. Not so this year.

Is it any wonder Peter has not been the eccentric funnyman he was when he was admitted more than two years ago? He’s fed up with being locked in. Bored. All along I’ve told him about the pandemic and tried to explain why he’s even more confined than previously. He doesn’t remember what I’ve said. Well, that’s the problem, isn’t it? Remembering.

I had to laugh when I learned my husband had sneaked into a resident’s room and tried to put her clothes on. I laughed when I heard that he removed the laces from his shoes and tied them around his ankles for some reason. Not so funny is that he’d taken he laces out of other residents’ shoes. And not funny at all are other offenses that are totally out of character for my toe-the-line, proper English husband.

Combativeness is also unlike him. I’ve read that some dementia patients possess shocking physical strength. Peter is one of them. As a result he’s been prescribed a medication to calm him. It makes him so dopey—stoned, my daughters say—that he can barely talk. I realize his behavior could harm someone, but I wrote a letter to suggest alternative ways to redirect him. A cup of tea, favorite jazz on his “radio,” English football on his t.v.

Now it could be that during these nearly ten months since March that Peter has moved further along the dementia continuum, or it could be that the long isolation has had the debilitating effect that so many elderly residents suffer.

At last though, vaccinations for nursing home residents will begin soon in our area. With that, face-to-face visits might be permitted before too much longer. Maybe the “old” Peter will materialize, at least for a while, and we’ll be able to share genuine laughs once more.

Header photo: During a recent FaceTime chat, Peter wore a hat that he probably “borrowed” from someone’s closet.

Through the plexiglass darkly.

Who would have thought six months ago that this blasted redoubtable pandemic would still have the whole world in its grip come August? When I hugged Peter goodbye that March Friday, who knew my almost daily visits would be reduced to FaceTime, chats through the fence surrounding the facility or, lately, peering at each other through a plexiglass shield?

Now residents’ families can schedule twenty minute visits outside, weather permitting, with their loved one, a recent change. The meetings take place in a secure area, one visitor at a time with no touching, eating or drinking permitted. As should be, the visitor must complete a questionnaire, have their temperature taken and wear a mask.

Brandi had already taken Peter to the shielded area when I arrived yesterday. His eyes popped and he did his “Oh, it’s you,” routine when I walked up. Right away he wanted to know why I had “that thing” on my face. “Because I have jam on my mouth,” I joked. He thought that was pretty funny.

Like the gloomy day, Peter was foggy, a bit more so than usual. It was hard to hear his raspy voice through the plexiglass and his ever more rambling comments made the visit difficult. He brightened, interested, when I told him I’d heard from friends in England. He remembered them, their home where we’d visited many times, and he laughed at the name of the village where they now live—Oxshott. For just that brief bit of conversation he was present, in the moment. I felt better for the glimpse of the old Peter.

When my time was up, he tried to find a crack in the plexiglass to put his hand through. Since we couldn’t hug each other I showed him how to hug himself—arms crossed over his chest, hands gripping his shoulders—while I did the same. He made silly faces, but his eyes were sad. Then, just as I stood to leave, he really looked at me. “Do you have everything you need?” he asked. His concern was apparent.

That tiny shard of clarity—wondering about my circumstances — so surprised me that it brought tears to my eyes. “I’m fine,” I said. My eyes continued to mist over as I walked to my car. It would take more than one cup of tea to make me right.

Header:  Peter’s photo-perfect smile even shines through plexiglass.

 

 

 

2016 National Society of Newspaper Columnists’ contest finalist. 

‘Will I see you tomorrow or the day before?’ he asked.

These days Peter often wears two shirts because he doesn’t remember he already has a shirt on. Sometimes he wears two socks on one foot, sometimes no socks at all. The other day he fished around in his pocket and finally pulled out a cracked white plastic spoon, a mechanical pencil and a tan sock with red, white and orange stripes. He studied the sock, shrugged, then used it as a handkerchief. I couldn’t help it, I laughed and laughed and he did too.

Sometimes laughter is all you’ve got.

I knew his hankies were well past their use-by date, so I bought new ones. When I took them to him he was as thrilled as if they were woven with gold threads. A day or so after that, he pulled out all eight of the new handkerchiefs, still neatly folded. Maybe now he’ll put the socks on his feet, rather than in his pocket, but I wouldn’t bet on it.

As days go by my husband loses more and more words and his voice is fading, not that he was ever very loud or even very vocal. He’s long since forgotten my name, as well as family and friends’ names. That makes me sad, but it wasn’t unexpected. Now though he doesn’t know his dog’s name—Nobby. That’s very sad. Even more surprising, he can’t remember the name of his favorite Disney character either—Mickey Mouse!

Laughter can make sad things better…sometimes.

When I walked in Sunday Peter was sitting in the lounge holding a can of Pabst Blue Ribbon. I’d brought his favorite McVitties Chocolate Digestive biscuits to have with tea. “Do you want to finish your beer and wait awhile before I make tea?” I asked.

“I don’t have a beer,” he huffed.

“What’s that in your hand then?”  He doubled over laughing. I suggested he set the dominoes up while I fixed tea.

“OK, but I don’t know where my room is, do you?” He was surprised when I said yes. We only played three hands. Generally he plays well enough with a little prompting, but he was struggling.  He seemed tired.

“Let’s finish this game next time,” I said, gathering my things. “But remember, you’re ahead by thirty points,” I told him.

“Will I see you tomorrow or the day before?” he asked.

“Today is the day before,” I said. He smacked his forehead and laughed again.

“Good thing you don’t make calendars,” I said. He shook his head and waved me off.

Sometimes laughter really is all you’ve got.

Header photo: Peter holds his beer.

 

 

 

2016 National Society of Newspaper Columnists’ contest finalist. 

Shades of happy.

A neighbor drove by while I was walking the dog one morning. She stopped to say she missed seeing Peter out with Nobby. “I do too,” I said, “thanks.”

“How is he doing?”

“Better than most,” I told her. “We’re ‘lucky.'”

“Tell him Ron and I said ‘hello.'”

Another morning walk and another neighbor, Ann, stopped at the curb. “I’ve wanted to tell you how much I enjoy your blog,” she said. “I help someone who has Alzheimer’s. It’s tough all ’round…” she waved goodbye, then called out, “by the way, love your dog.”

Monday an email reminded me, as if I could forget, that my blog would be featured July 17—today— on the AlzAuthors’ website. Anyone who writes, who longs to be published, who doesn’t care if she ever earns a cent will understand what an absolute thrill this is.

Published!

When I took Nobby out yesterday I was still doing my happy dance from the previous day’s news. Yet another neighbor came along and, when Nobby bounced over for a cuddle, she remarked that her golden doodle was as happy as mine.

Any of my followers who are dealing with or affected by any of the dementias should look at AlzAuthors to read other writers who have advice, ideas or kind words on a subject that affects 500 thousand more people each year in the United States alone. You can learn more about AlzAuthors here https://www.facebook.com/AlzAuthors/  here  https://twitter.com/AlzAuthors and here https://www.instagram.com/alzauthors/

To be published on a national site and, more importantly, to be able to share, more broadly, our experiences, Peter’s and mine, well, it’s intoxicating! “Happy” doesn’t begin to describe my joy.

Header photo: Delicate old-fashioned hollyhock disappeared from my garden years ago. I spotted it recently, tucked among the branches of the Nashiki willow, in a different spot entirely, but still as pretty.

 

 

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. 

Channeling Henry VIII.

This bit of gallows humo(u)r is, well, an interlude in our own Shakespearean tragedy.

Sunday’s visit with my husband was difficult, especially since I’d gone to see him after a pleasant few hours’ brunch with my friend Karolyn. She and I had empathized and giggled over our similar lots in life. When I left I was in a good mood, but when I arrived at the facility where Peter lives and headed toward his room a nurse coming towards me shook her head. “Peter has done even more packing up this time,” she said.  And good morning to you too, I thought. I let that slide for the moment.

Peter was in the dining area, just finishing lunch. He did his usual surprise act when he saw me. “Oh, it’s you!” he said. “Where did you come from?”

“Out there.” I pointed to the entryway. “Are you finished? Have you had dessert?” There was still food on his plate, not surprising since he doesn’t like the meals.

“Oh, yes” someone said,”he had a scone with a beer in one hand and a cup of coffee in the other.”

“A scone and a beer? What would your old granny say?” I asked. He shrugged and gave me his exaggerated fake wink.

It was a pleasant day so we went outside to the gazebo. After a few minutes of idle chat, I took a deep breath and prepared to have another Talk with him. A month ago he’d asked if he would ever get out of “this place.” Since he’d  asked directly I answered as plainly as I could hating, hating, that I must do it. I explained again that because of his falls, plus his wandering and getting lost, I couldn’t take care of him at home anymore. “I can’t lift you when you fall,” I said, “and I couldn’t always find you when you got lost.”

“But I don’t fall,” he said, “and I’ve never gotten lost.” I raised my left eyebrow. “Well, I don’t remember if I did.”

“I know you don’t remember, but that’s part of the problem. But you can’t help it.” I put my head on his shoulder and patted his knee. “I know you don’t want to be here and I don’t want you to be here either. But this is the best answer to a bad situation.” He was quiet. Tea, I thought. A cuppa cure-all. “Let’s go in and I’ll make us a cup of tea,”

I was shocked when I opened the door to his room. The nurse was right. He’d created even more mayhem than usual. This was the day same he’d gone so far as to hide his tv set. I bit my tongue to keep from saying what was on my lips. “I’ll make tea after I tidy up,” I said.

“I’ll help! What shall I do?” he asked. I nodded towards the bed where he’d stacked every single thing that that would fit. “I’ll put these clothes away, shall I?”

“Good idea,” I said. He hung up his shirts neatly, making sure they were buttoned and straight, while I put everything else away. Forty minutes passed before I fixed tea.

Peter frowned while he sipped, lost in thought. “It’s funny,” he said finally, waving his arms around, “I’m healthy all over the rest of me body. It’s just me head. I can’t remember anything.”

“We could chop off your head!” I said.

As quick as ever in his best Cockney accent, he said, “Off wif ‘is ‘ead!” And with no hesitation, he began to belt out,

I’m ‘Enery the Eighth, I am,
‘Enery the Eighth I am, I am!
I got married to the widow next door,
She’s been married seven times before
And every one was an ‘Enery
She wouldn’t have a Willie nor a Sam
I’m her eighth old man named ‘Enery
‘Enery the Eighth, I am!

We laughed and laughed and, for the moment, nothing else mattered.

2016 National Society of Newspaper Columnists’ contest finalist.