Category Archives: Remember

The final chapter

Posted on by under Alzheimer's, Caregiver, Family, Laughs lost, Laughter, tears, Remember

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.

 

Laughs aren’t always funny.

Posted on by under Childlike, Dementia, Laughs lost, Laughter, tears, Problems, Remember, tears

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.

Posted on by under eye of beholder, Laughter, tears, Remember

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. 

Who is that masked woman?

Posted on by under Remember, Thankful

I’ve only seen my husband in person four times since COVID-19 isolated us and those visits were through the fence that surrounds the facility where he lives. We can’t share a hug or hold hands, but at least I can see him, and he, me, although he pretends he doesn’t know me.

Leslie, Martin and I visited Peter recently, a visit arranged by a nurse who urged him outside. We chatted about 30 minutes until Les and Mart had to leave. I stayed longer and tried to answer his questions about the virus. He wants to know if it’s “fixed” yet.  Hard enough to explain the enormity of a pandemic to anyone at all, much less someone who has Alzheimer’s Disease. He repeats his questions over and over and I reply with the simplest explanations I can. That particular day he was clearly distressed. I tried to reassure him that he was safe where he was, while we on the outside of the fence must wear masks and be extra cautious because the virus is so contagious.

As I drove away he kept pace inside the fence with my car. I did the Queen Elizabeth wave to make him laugh, but I was fighting tears. Maybe he was too. It was my worst day since the day he was admitted more than two years ago. I don’t know why it was so difficult. Maybe it was seeing him so uncharacteristically sad.

When I visited the next week he seemed more his old self. I’d meant to take a photo of him during the other visits but stopped myself. Did I really want pictures of my husband behind bars? So this time I decided a “selfie” of the two of us would be fun. It wasn’t easy to stand six feet apart, factor in the length of my arm and still get both of us in the shot. He turned on his usual Peter smile—he’s such a ham—while I snapped several pictures.  When I showed him the results, again at distance, he wondered what “that thing” was on the side of the photo.

“That’s me silly,” I said. I tugged at the mask I’d had on the entire the time we’d been talking.

“Why are you wearing that?” he asked, laughing. I explained yet again.

Then he wanted to know why his head was so small in the picture. I didn’t try to explain perspective nor remind him of the six feet between us. When I pointed out that we’d been photo-bombed by the American flag, naturally that spurred questions about why the Union Jack wasn’t there too. “Because, the Fourth of July is coming up. That’s when we celebrate our independence from you lot,” I said. At least we were both laughing when I left that time.

 

Header photo: Peter’s happy “photo face” and my masked chin, neck and shoulder.

 

 

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Mama’s happy when she cries the blues.

Posted on by under Favorites, Remember, tears

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. 

 

 

Today was the day.

Posted on by under Be mine, Family, Remember

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.

Better than a dozen roses.

Posted on by under All sorts, eye of beholder, Family, Remember, Seasons

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.

A proper tea with tea pot and fresh baked cookies.
Peter, Miah and Martin.
Dad-Dad and Miah. I’m the silver-haired reflection in the mirror.
Leslie pours, milk first, then the tea.

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. 

Channeling Henry VIII.

Posted on by under Caregiver, Control, Laughter, tears, Remember

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. 

 

 

Lights out.

Posted on by under Alzheimer's, Caregiver, Control, Problems, Remember

Over the years since his dementia diagnosis, my husband has invented ways to control anything he can in his increasingly hazy life. I’ve written about his stacks of coins, never-ending twig collecting, his sweeping, folding, smoothing, polishing, wiping.

I. Want. To. Scream! And sometimes I do. Having said that, I’m sure he wants to scream too.

His latest attempt at control is not only baffling, it’s downright dangerous. I discovered it several weeks ago when I went down to the basement, a dungeon I try to avoid. Dark at mid-day, the windows are grimy and any light coming in is grayed.

I flipped the two switches several times. Nothing. I scrabbled around and finally discovered Peter had removed the bulbs from the six overhead fixtures. I don’t know why and I didn’t ask because I’m sure he wouldn’t have known either.

I put new LED bulbs in all the sockets. He took them out. I talked to him about the danger of going down the steps and walking around in the dark.

I put the bulbs in again. He took them out again.

Our basement is not a finished space. Hazards lurk — bicycles, tools, piles of newspapers and magazines, chairs, tables, workbenches. I thought I’d solved the problem with my little chat about dangers in the dark.

Today I realized I hadn’t. The bulbs were gone again. Why did I think he’d remember?

Laughs, I’m looking for laughs, but it’s dark in here. A bigger bulb maybe?

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

‘What do I want?’

Posted on by under Alzheimer's, Caregiver, Childlike, Favorites, Remember

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.

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

2016 National Society of Newspaper Columnists’ contest finalist.