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.
Laughter has been as scarce as toilet paper and hand sanitizer these recent months. There are glimmers of good news now and then, but the bad far outweighs the good. March 14 the facility where Peter has lived for two years closed its doors until further notice due to COVID-19. “Further” has yet to be determined. Still, who am I to complain when tens of thousands of families will never see their loved ones again?
Oh, Peter and I have talked on the phone and FaceTimed. He always sounds quite jolly when we talk, but it isn’t difficult for me to get him going. I say something silly, he laughs and comes back with something sillier. We’ve been doing that for years. After we’ve talked, whoever facilitated the call—Haley, Brandi, Jordan—lets me know that he smiled the whole time. I appreciate them telling me. Smiles work wonders when reasons to laugh are so scarce.
Peter understands that there’s a serious health crisis, though it would be a stretch to think he understands what a pandemic is or the devastation it has wreaked around the world. His world is limited to the locked doors behind which he and 15 others live. He’s safe there.
When we FaceTimed last week, aided by Brandi, I happened to be sitting outside in the sun—sunlight destroys the virus, they say—and I didn’t have time to corral my flyaway hair. “Is that you?” Peter asked, frowning. He had her phone pressed close to his face the better to decide if the image on the screen was indeed the woman he married.
“I look different with all this white hair, don’t I?” I asked.
He hooted. “Oh, is that you?”
I nodded. “I look like my grandmother.”
“Well how old are you?” he wanted to know.
I sighed. “We’re both over the hill, Pete. I’m eighty-one, and you’re…”
“SIXTY!” he blurted.
“…Eighty-two.” My turn to laugh.
Thursday we visited through the garden fence, again with Brandi’s help. She made sure Peter was outside at one o’clock. He wasn’t quite sure about the masked woman standing near the gazebo. He walked toward me hesitantly. “It’s you!” he said finally.
Leslie and Martin arrived a bit later. We three stood in the sunshine, at distance from Peter, and chatted as if it were a normal day. Peter’s grasp of the virus’s severity is fleeting. “Is ‘it’ just here?” he asked circling his arms around. “How long will ‘it’ last?” he’d say every few seconds. Again and again we told him that the whole world is affected and that no one knows for how long. Each time he’d roll his eyes, shake his head and repeat, “‘Is it just here? How long will it last?”
He took some comfort when Martin told Peter he was safer inside than we were outside. Finally, I encouraged him to go see if there was a cup of tea in the dining room with his name on it. Certainly tea won’t cure this pandemic, but it can’t hurt.
Header photo: I forgot to take a photo of us at the fence, but Peter hasn’t changed much since this one was snapped two years ago when he was only 80.
2016 National Society of Newspaper Columnists’ contest finalist.
Experts in dementia circles advise that people afflicted with Alzheimer’s or other dementias shouldn’t be told about the virus that is ravaging the world.
As I often do, I went against advice.
The last time I was allowed to visit Peter, March 13, I gave him general information about coronavirus. He listened intently, the way he always did when he understood I had something important I wanted to talk about. He always gets the message—my evil eye does the trick—that I want him to listen and not make jokes. If he can get away with it, he’ll always joke. He asked questions that told me he understood, at least right then, in that moment.
Before I left him that day, not knowing then that I wouldn’t see him for weeks, I stuck a reminder message on his bathroom mirror: Wash your hands with soap and water. “Why do I have to do that? he asked.
“Because of the virus I told you about,” I said. “Soap and hot water are the best way to keep from getting infected.” He nodded as if he understood. Later I thought of several better ways I could have phrased that.
He probably peeled the message off the mirror within an hour or a day. I believe it was better for him to have heard something about the pandemic than to hear nothing at all.
[Dry erase sticky-back tape, by the way, is available in office supply stores and on Amazon. I’ve used it often since Peter has been in memory care. It’s my way to get a message right in front of his eyes. I don’t know if it’s as effective as I’d like, but it makes me feel better.]
He’d asked questions that day and I answered with words I thought would make sense to him. And when, a few days later, we FaceTimed, thanks to Mark, Peter asked where I was. I thought he was asking why I wasn’t there, with him. But, no, he wanted to know where I was physically. I happened to be walking along the street so I scanned my surroundings to show him. But that wasn’t the answer. “She’s walking in town,” Mark explained
That’s all he wanted to know.
During a phone call several days later, I told him that the sports channels were playing previous years’ best sporting events because no sports were actually being played now. “You can watch them if you haven’t disconnected your television,” I said.
On the one hand it’s too bad the tv in the lounge never seems to be tuned to sports programs. Peter is only one person out of 15 others, most of whom take naps in front of “Golden Girls” reruns. He does have his own television, as do some others, but he “turns his tv off” by unscrewing the cable connection and unplugging the power cord from the so-called locked outlet! If soccer, rugby, tennis or golf is on the tube, Peter will watch it. Shouldn’t he be able to watch sports instead of “Golden Girls” in the lounge, where the tv is always on, if everyone else is asleep?
I came across the photo below recently. The activities crew sprayed a table in the dining area with shaving cream and asked residents to make designs in it or just enjoy the feel of the slippery soap. There were a lot of laughs while they mucked about and it smelled fantastic. In a way I’m glad Peter didn’t participate, because I can imagine he might have started tossing blobs of suds! Hm, maybe this should be routine, a way to make sure residents wash their hands thoroughly.
A fun way to wash hands, and it smells delightful.
I was able to talk to Peter on the phone today. He understood without me saying so that I hadn’t been to visit because I wasn’t allowed in. He asked about “this thing,” meaning the virus and, among other things, I told him that Prince Charles and England’s Prime Minister both have the virus.”Charles is safe in a castle in Scotland,” I told him.
“And where’s the Queen?”
“Tucked away in Windsor Castle,” I said. Then I explained that most countries have closed all but the most essential businesses. “But, get this,” I said, “the English were so upset that pubs and fish and chips shops were closed, so they made an exception.”
He laughed. “Gotta have a nice pint, right? Chippies? Can’t close them, can they?”
Header photo: A week before the facility closed to visitors, I walked into Peter’s room to see him sprawled, snoring, on his bed, apparently quite comfortable.
2016 National Society of Newspaper Columnists’ contest finalist.
Last January I vowed to spruce up Peter’s dreary grubby room. When he was admitted to memory care ten months earlier I did the best I could at the time, but knew I could do a lot better when I was less stressed and he was more settled. The look of his room was the last thing on his mind during those first unsettling weeks…months. And really, just coping was all either of us could manage for a long time.
Last week, I finally “spruced” aided capably by housekeeping and maintenance personnel.
An efficient young woman had already mopped the floor—even behind the furniture, mind you—wiped down doors, cleaned splotches off walls and washed windows and screens by the time I arrived. All she had left to clean was the bathroom. She held up the grimy blue bathroom wastebasket. “Do you want to keep this?” she asked with a shudder.
“No, it was here when he moved in,” I said.
“It’s gone!” she said.
Then two cheerful maintenance men, Smothers Brothers types, arrived to shuffle the furniture around. They approved my plan and the new dashes of color. “Needed a woman’s touch in here,” one said. I chuckled. The old look was this woman’s touch too, though lacking any appeal whatsoever. When they finished, I tidied Peter’s things and cleared the clutter, so pleased to make good on what I’d pledged to do so many months ago.
What an enormous difference the bright comforter, new Mickey Mouse poster and change to the furniture arrangement made. The orange paisley comforter replaced one I’d bought nearly 40 years ago for eighteen-year-old Leslie. That faded blue relic was way past saving.
I didn’t expect—and didn’t get—a reaction from Peter to the room’s new look when he and Mark returned from lunch. He never was one to notice little things I did around the house—husbands usually don’t—but I felt better for having accomplished my January goal.Sad to say, another goal dating from September remains unmet. I’d thought my plan to revive the gardens outside the area where Peter and 15 others live was a done deal. Flowering shrubs, evergreens, scented plants and bulbs were proposed for planting this autumn to head-start growth and be ready for springtime bloom. Unfortunately, that project is on hold until the new year, not because I didn’t fight for it as much as I dared.
Next time I visit I’ll take the tulip bulbs saved since Peter’s February birthday, Leslie and Martin’s gift to him. We’ll plant them in a big pot to brighten the view outside his window come March. There’s more than one way to get a head start on spring.
Header photo: Bright new look to Peter’s room.
2016 National Society of Newspaper Columnists’ contest finalist.
It was more than a year after I placed my husband in memory care before I found a new normal. I’d skimmed across the days, weeks, months in a daze, I now know. Friends said I was doing well, but I knew I was barely hanging on.
But at last, mama’s got her mojo back. Carpe diem.
Almost from the start, I had concerns about certain aspects of Peter’s new life. Nearly 18 months later I realized that the route to change was for me to Do Something.
I made an appointment to talk with one person but ended up in the office of another, a nice young man who had the authority to affect change. When I sat down with him—I’ll call him Mr. L—I had two pages of notes ranging from serious matters like Peter’s refusal to take his meds or take supervised showers regularly to other, superficial items. He lay my top priorities to rest quickly. Weeks prior word had reached Mr. L’s desk that twice I’d found pills lying on my husband’s table. Steps were taken. Peter no longer gets away with his tricks to hide meds, although I’m sure he still tries.
My complaint that two showers a week aren’t enough for anyone, anywhere, anytime, much less my often “fragrant” spouse, was addressed. It’s still a battle for whoever has to convince him, but it’s happening. Who knows, maybe Peter will come to accept his new normal.
When I visited recently, an aide told me Peter had refused to shower that morning, as he had on Friday. “I’ll talk to him,” I said, thanking her for telling me. While we had our tea I told him how upset I was about his refusing showers. He looked like he’d been caught with his hand in the cookie jar, but he continued to insist he didn’t need to shower “all the time.”
I persisted. He held firm. Finally I suggested we play dominos and the best-of-seven winner would make the shower decision. Peter lost. He went to the shower room willingly. Afterwards, he came back to his room arms raised, hands clasped above his head. He looked good, he felt good and he he’d made me happy. “Domino effect” has taken on new meaning. I might have to show the aides how to play the game!
Peter always liked to garden.
Next on my list was the garden that surrounds the wing where Peter and as many as 15 others live. “The front of the facility is very nice, well maintained, welcoming,” I said to Mr L, “but that garden is pitiful. The raised bed is full of weeds and mint. The area is not inviting at all.” He agreed. I also suggested painting the ceiling of the gazebo blue. That struck a chord and Mr. L added that the porch ceilings needed paint too. Yes-s.
Then I mentioned my two occasional gardeners—they help me at home—and asked if it would be OK to contact them to see if they would be interested in a garden overhaul. Yes and yes. Before long they’ll start work on their plan that includes brilliant perennials with compelling scents—lavender, lilac, viburnum—and although fall hasn’t even started, I can’t wait until spring.
The tall black garden fence is meant to contain residents who try to escape, Peter among them! I proposed murals on some fence sections to make them less prison-like. Murals are on the radar with two potential artists lined up.
Peter ponders his next domino move.
When I asked about a table and chairs for the gazebo, snap, they appeared a few days later. I hope other residents and their families enjoy sitting there as much as we do.
How about enlisting student volunteers from local schools and the university to visit with residents or plan entertainment? I asked. Maybe youngsters could write notes to them? Would young children from day care facilities come to cheer the residents? I wondered. Worth trying, Mr. L thought, and before long he’d made some calls and ideas are flowing. Peter loves little children and I imagine other residents would enjoy little children and their antics, too.
My list grows, even as I sit here tweaking this post. At least now I’ve Done Something about things that can be remedied with the right sources and not too much money. I’ll probably make some enemies in this process, but it wouldn’t be the first time. I’m not called Mother Tough without reason!
Header photo: Peter asks if he can help when the garden rehab starts. “You can sweep up every day,” I offered. He nodded. “I’m good at that,” he said.
2016 National Society of Newspaper Columnists’ contest finalist.
How I pity the aides who try to get my husband to shower. His jovial personality disappears when he really Doesn’t. Want. To. Do. Something! And he really doesn’t want to be prodded towards the shower by a female aide, or for that matter, by a male aide. I’m reasonably sure he isn’t the only male resident who balks. It’s got to be embarrassing, humiliating, to be led off to the bath room as if they were little boys.
A year ago, early in Peter’s stay in the memory care unit—the best facility around I might add—I complained, rather loudly, that my husband needed a shower. “He stinks!” I announced. Another day I asked if I could try to get him to shower. The answer was yes and I was successful. He stayed a long time and all I had to do was be there. I didn’t help him wash, didn’t help him dress, but I did tell him how “fresh” he was afterwards. He grinned as if to say it was his idea in the first place.
Unfortunately, showers are only scheduled twice a week, for the men at least. Not often enough for anyone, and especially not enough for my pungent husband at any time and certainly not in the heat of summer. Oh I understand there could be staffing issues and I readily acknowledge my husband is stubborn. But good hygiene is absolutely necessary, in my book, clean clothes too.
Peter’s dug-in heels are contrary to the man who sometimes showered three times a day when he was working in the yard. He’d mow the grass, shower, put on clean clothes, go back out, do another task, come back inside…repeat…repeat….
I had quite a laugh last week when I heard that he had two showers on Tuesday—one in the morning overseen by one aide, the second in the afternoon with help from a different aide who didn’t realize he’d already washed and put on clean clothes. Two showers, two changes of clothes, one day! Woo hoo! Apparently, he didn’t object either time and, because he didn’t remember the first one, he didn’t fuss the second time. Blessing disguised.
Friday, the other shower day for the men, an aide convinced him to shower again. When I picked him up at five to go out to eat with Leslie, Martin and me, not only was he clean, but he was wearing clean trousers and the blue golf shirt Leslie gave him for Father’s Day. Win. Win. Win.
2016 National Society of Newspaper Columnists’ contest finalist.
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.
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.
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.”
Peter and Nobby are such hams.
Peter decorates his tiny tree for Christmas 2018.
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.
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.)
Dementia isn't funny. 