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
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 . 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.
The three-week Tour de France raced to its thrilling conclusion Sunday in Paris. Over the years Peter and I have watched the always-exciting Tours, but this year’s race took the prize for nail-biting sprint finishes, new records set, dramatic crashes, more torturous mountain climbs, and global warming induced weather extremes. All good television as they say, but nothing more so than watching my cycle loving husband watch his sport.
I arrived at his door just before NBCSports began their coverage of the final ride into Paris. I’d dug out Peter’s faded yellow cycling cap, battered and worn though it is, and draped several of his medals around his neck. (Most of them were his badminton medals, but it’s the thot wot counts as his ol’ granny would’ve said.)
In his day, Peter biked a thousand or more miles per year evenings and weekends. He entered local races occasionally and always won his age category. Together we biked with tour groups and occasionally he deigned to ride with me while I “watched the grass grow,” his words for my speed.
Sunday he kept his eyes glued to the TV screen for the whole of the 108.4 km (67.3 mi) ride. Janey, one of the nurses, even brought his lunch in so he wouldn’t miss anything.
Better than any yellow jersey, any trophy, any medal was that Peter was the most present and the most content he’s been, in my presence at least, since before the pandemic. It was a far cry from the torturous months I’d just struggled through advocating for him. Sunday was a podium-worthy day. I smiled all the way home.
Header: Peter holds the trophy he won in the Tour du Utica (NY) in 1989—first place in the over-fifty category.
The stuff of my imaginings was the reunion and happy hug with Peter after the long, Covid-induced isolation more than three months ago. Less than five minutes after this picture was snapped, the glow was quashed.
I’d visited him isolated behind a large plexiglass shield a week or so earlier and I’d noticed then that he was wearing Crocs, no socks and his ankles looked swollen. His feet didn’t hurt, he said, but then he never has complained.
Carolynn, here the week of our reunion, was thrilled that she could visit her Poppy with me that day. She’s a registered nurse and I’d told her I wanted her look at his feet. We both gasped when I pulled his pant legs up. “This is bad, Mom.” There were oozing sores, one of them the size of a quarter, scattered across his badly swollen lower legs. The skin was red, scaly. Plus-4 pitting and weeping edema, which I’d never heard of, is what she observed. This hadn’t happened overnight. Obviously Peter wasn’t being assessed or treated and we wanted to know why not.
“He should be wearing compression stockings for the swelling, he should have an ultrasound to rule out heart issues, at the very least he should be on Lasix to reduce swelling, his meds need to be checked, and besides that,” she huffed, “his room is filthy!” She was in full charge nurse mode. I asked her take the lead when we talked to the duty nurse. I softened my daughter’s remarks a bit, adding that I knew Peter was responsible for some of the mess and clutter in his room but still, he was the resident in care and the “care” seemed to be missing.
Thus began what turned into more than three months of working through a scrim of excuses and blame. True, everyone, staff and residents alike, had been affected by Covid, but it was apparent that nursing basics had not been followed.
Dementia took Peter’s voice. I found mine.
Even though I detest confrontation, I went on the attack. My mantra became, my husband is not getting the care that more than 7500 dollars per month should ensure.
I contacted friends who had dealt with a loved one’s dementia-related issues and got their advice. The most pertinent—speak up.
I made phone calls and when that didn’t get the results I’d hoped for, I wrote to those who were in position to make changes.
I asked that compression stockings be ordered and when that wasn’t done, thanks to various lame excuses, I bought poor substitutes at CVS. Soon, the preferred brand were ordered.
I was told, incorrectly, that if I wanted my husband to see a cardiologist, I had to make the appointment. I got the required referral.
When I questioned some of his meds, particularly those to calm his combativeness, I complained about the zombie affect they caused. I suggested my time-tested calming techniques: a cup of tea and his tv tuned to sports.
There were other issues, but these were most significant and are being dealt with with varying degrees of efficiency.
Roadblocks and excuses every step of the way.
When I was told Covid has changed everything, I agreed. I complimented the good job the staff had done to keep residents safe during the long ordeal. I was sympathetic to their long work hours, short staff and uncertainties both at work and in their personal lives. When I heard, I’m not paid enough to do this, or We don’t have enough staff, I agreed. Easy for me to say, Hire more people, pay them more, offer incentives.
Peter’s legs are somewhat better, though still swollen. The most worrisome ulcer is healing slowly. He’s finally able to smile and joke a bit. That tells me he really did feel poorly, but couldn’t express himself. Who knows how long the condition had festered before my daughter and I let staff know that we knew something was grievously wrong?
I wish I could write a happy ending to this post, but in reality dementia is inherently unpredictable. And I wish I could say that there have been no further issues for me to deal with, but that isn’t the case. Frustrating senseless problems continue. They seem endemic.
The laughs that have helped us traverse this long path have been scarce these recent months. I cling to the tiniest chuckles: Peter was coming along the corridor one day when I walked in. He clutched at his trousers in a telltale way, so I headed him to the bathroom. “I don’t need to go in there,” he growled and pulled two small cans of Coke out of his pockets. I shook my head and laughed. He gave me a knowing look. “Gotcha!,” his smile seemed to say.
Header photo: Clematis hugs our lamp post. The plant symbolizes mental beauty and ingenuity. It climbs trellises and walls, sometimes in incomprehensible ways. Peter has attempted to climb walls too, and just two days ago I caught him stacking chairs in the gazebo! A means of escape? I wouldn’t put it past him.
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!
When you look at a the header photo above do you see despair? Frustration? Pain? Boredom?
Nope, what you see is my husband sound asleep during what was supposed to be our regular half-hour Wednesday afternoon FaceTime chat. He simply could not keep his eyes open nor say anything that day. When I threatened to sing he managed a weak smile. I prodded him virtually, but he didn’t stir. Short of being able to poke him in the ribs, I could do nothing at all.
The longer I watched, iPad propped in front of me, the more upset I became. This was not normal. He was sleeping so soundly that when his head dropped to the tabletop, he didn’t even startle. I used the time to do what I do when things need sorting: write. I sent an email to the staff person who had alerted me to Peter’s unruly behavior more than a month earlier. At the time, she’d told me he’d been prescribed something to calm his rages. Was he overmedicated perhaps?
“I am…FaceTiming with Peter right now,” I wrote. “He is dead asleep again as he has been most times I’ve attempted to talk to him in recent weeks. Is this a result of the calming med he’s been on for some time…? If so, [it seems] more a chemical restraint….[I hate] seeing him this way.”
Later I learned that Peter had indeed been up all night. Was he sleeping in the daytime because he’d been wake all night, or because he’d been given more medication thanks to a middle-of-night tear? I didn’t get an answer then, but recently I did. Yes, he’s still taking the med to calm his outbursts, but worse, a new one has been added, not to modify behavior, rather because of his alarming A1C level.
My husband, who always boasted that his weight had been a steady 10.4 stone in English-speak (145 pounds) since he was 18, has ballooned to 11.6 stone (155 pounds). He has a pot belly now, I’m told. The plan is to monitor his blood glucose daily, assuming he’ll cooperate. He’s never at his best first thing in the morning so I do not see him putting up with a jab before he’s had his coffee.
The good news is that his escalating A1C was discovered and is being treated—left untreated, eye, heart or kidney disease could occur. The bad news is the new med can cause increased appetite.
The nights Peter is awake, he eats whatever he can find. Snacks are available but they aren’t ideal for a diabetic: pudding, Jello, chips for instance. Because he’s always hungry—hunger born of boredom, I think—the dietician has started fixing him a heavier snack late in the day. She is to call me so that between the two of us we can come up with a plan. For a start, since he’s the only resident up in the wee hours, why are snacks even available! He’d likely welcome a cup of tea. Yesterday I delivered new trousers to replace the ones he’d quite literally, busted out of. I put a package of his favorite tea in the parcel. Once I might’ve put in a packet of cookies, but no more.
Since last March he’s been “locked in and locked down” like the rest of us in this pandemic restricted world, unable to walk outside with me or a caregiver or get any exercise at all. It’s no wonder my formerly skinny husband has packed on 0.71 stone?
When we FaceTimed this week it was against the background of a visiting musician playing his guitar and singing old favorites—”On the road again,” “Don’t sit under the apple tree,” “You are my sunshine.” We sang along and chuckled at our feeble efforts to remember the lyrics.
What to my wondering eyes did appear yesterday, but my smiling husband, a grin ear to ear. Like a child on Christmas morning, Peter was obviously tickled as Santa climbed up and down a red ladder, accompanied by carols. When Leslie bought the toy she knew Peter wouldn’t be able figure it out himself, but she also knew it would make him laugh. Activities director Hailey set it up for him and arranged our FaceTime call as she does every week. When I answered, he was grinning delightedly at the clever Santa Claus.
What a thrill to be able to post good news today, a dramatic change from my previous post which oozed gloom to rival Charles Dickens’ stories. Peter eyes twinkled and he looked more lively. A right jolly old elf. He’d had a shower, his hair was clean if badly in need of cutting, his nails had been trimmed, he wore clean clothes and his new slippers and socks. Joy to my world!
Cheers to whoever prodded my husband to bathe and endure a manicure. He’s a real bear when he doesn’t want to do something.
Unlike the previous few weeks’ calls, Peter was just more present. He was able to converse a bit and he laughed at my pathetic attempts to sing “Jingle Bells.” He even appreciated my sparkly green Christmas ball earrings and was surprised I had two of them. “I do have two ears you know,” I said.
When he asked what I’d been doing, I said I’d baked my annual whiskey cakes. “Remember them? You and your dad loved them,” I said. “Both of you complained I didn’t use enough whiskey.” He shook his head. “No? Oh well, I won’t bring you any then,” I said.
I switched topics and named some old pals from his days at “Generous” Electric. “Do you remember Gary…Dick…Jerry…Vince, Joe or Bill…?” I asked. He nodded. “Of course I remember them!”
“Hmpfh, you remember your old buddies but you don’t remember my whiskey cake! That’s it, I’ll eat it all myself,” I teased.
Quick as a wink, he came back. “I remember now. Never enough whiskey in it though.” His sly smile said he knew I would never eat it all and that he would get his share.
If I were to talk to him today a different scene might be in play. But I like to think that a combination of the clever Santa, a spruce-up and, yes, perhaps the change of meds, all played a part in Peter’s better yesterday. I know, it made my day!
Photos: For all his wild gray hair and beard, Peter looks like a child on Christmas day.
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.
During these endless agonizing months of pandemic-induced isolation, visiting with dementia patients has been even more difficult for everyone involved than it was during what was formerly known as “normal.” Prior to March, I saw Peter several times a week. Instead of chatting we did jigsaw puzzles, watched sports on television or played dominoes, always accompanied by a cup of tea.
Now, with FaceTime as the only means to visit, talking is the only thing we can do. Until very recently we were able to visit outside through the fence but now — Covid cases are spiking within the facility — even that is out. I struggle to come up with things to talk about during the FaceTime meetings that Hailey, the activities director, arranges.
Yesterday was a different story. When I answered the 11:30 call I didn’t expect to see my husband still in bed and covered with his mattress pad instead of this quilt.
“BWAHAHA!” I burst out. He startled awake and looked directly at my face framed on the laptop screen Hailey had propped near his bed. “How did you get in here?” he asked. I tried to explain that I wasn’t there, but I couldn’t talk for laughing.
I heard Hailey giggle. “Sorry I’m late, Judy,” she said. “We had a fire drill and a lot was going on. I didn’t know he was still asleep.”
“He’s always liked to sleep late,” I said, “but this is late even for him.” Peter was having a very hard time waking up.
“What time is it?” he grumbled.
“Almost noon. Did you have breakfast?”
“Don’t know, but I’m hungry.”
“You’d better get up or you’ll miss lunch!”
He peeked under the covers. “But I’m not dressed,” he said and closed his eyes.
He peeked under the covers. “I’m not dressed,” he said as he snugged the mattress pad over his shoulders and closed his eyes.
Photos clockwise from top left • Peter looked pleasantly surprised to see me when he woke up yesterday morning • Last year on Halloween he was discharged after two days in hospital • Peter’s companion Mark draped him in his bed sheet while waiting to leave • Last January we could still have tea together in his room • Hailey snapped this so I could see what Peter looked like when he was chatting with me via FaceTime.
He clutched a brilliant bouquet when he came to the fence. So bright and colorful I thought the flowers were artificial at first glance. But no, with Hailey’s help, he picked them from the raised garden that he helped plant months ago — glowing orange and hot pink geraniums, a pink begonia, a deep red celosia plume, pink polka dotted hypoestes.
And I’d brought along a surprise to show him. Pippa. I’d held off introducing her until I felt comfortable with the idea. Even though Leslie and Carolynn were convinced their dad had forgotten his Golden Doodle Nobby, I was convinced meeting Pippa might spur sad memories and upset him. It didn’t.
Peter did refer to her as “him,” and he called her Nobby several times. He tried pet her through the fence, but she would have none of it unless I would let her squirm her way under the gate towards him. I wouldn’t. But lively little Westie that she is, she “talked” constantly in her squeaky little voice. We didn’t understand a word, but she made us laugh anyway.
We talked for nearly an hour, mostly about Pippa. When I got ready to leave I thanked Peter again for the flowers. “What flowers?” he said.
“These!” I held them up.
“Where did they come from?”
“From you! From that raised bed over there that you helped plant up last spring.”