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

 

A man and his dog.

After several years together dog owners and their dogs begin to look alike, so they say. They begin to act alike too, in my opinion. Take Peter, 81, and Nobby, his golden doodle, nearly 12.  Both are mischievous and have the inherent ability to make people laugh at their antics. Both would fetch sticks for hours if their years hadn’t slowed them.

The final week of October was a week I’d like to forget and one Peter forgot as it was happening.

Monday, Nobby had surgery to remove a suspicious lump from his left front leg. While he was anesthetized, the vet cleaned his teeth, too. When I picked him up, he was wobbly, confused and so ashamed of the blue cone around his head. It interfered with his food and water consumption, his ability to walk through doors easily and, worst of all, he couldn’t find the right spot outside, um, to mark his spot.

Tuesday, just as I was leaving for my own teeth-cleaning appointment, the phone rang. Peter had had a bad turn at lunch. He was disoriented, more confused than usual, incontinent and his temperature was 101.2°.  Would I come? Of course I would. Hindsight tells me a trip to the dentist’s office would have been a piece of cake and Peter likely would have chosen a root canal over what followed.

His temperature had spiked by the time I got to his room. His face was so red it was almost incandescent. “Can someone take his temp please?” I called out. Whoa, it was 104°! I put cold washcloths on his forehead while waiting for the doctor to return my call. I requested Tylenol from a nurse. Nunh uh, without doctor’s orders not even Tylenol can be given to a resident.

As is always the case, Peter said he wasn’t sick. He tried to bluff his way past my concern. He was as dazed and unsteady as Nobby was on Monday. I urged him to drink water, then steered him toward the bathroom. Like Nobby the night before, Peter didn’t know why he was in there, but at least he didn’t have to go out into a dark, drizzly night.

We went to the emergency room where he was seen quickly enough, though it was a five-hour ordeal. He was hooked-up, jabbed, poked and questioned. He tugged at his IV, tangled the blood pressure tubing and tried his best to get the pulse oximeter off his finger. He bellowed and cursed during one particularly sensitive probing. Later he erupted like a child when a nurse gave him Tylenol tabs and a cup of water. “Tastes awful,” he yelled, even as I cautioned against chewing. This was not the behavior of the mild mannered man I married. This was dementia talking.

Like Peter, Nobby refuses to swallow pills, even wrapped in Pill Pockets. He spits them out with such force they fly across the room.

With a presumed diagnosis of prostatitis, Peter was finally admitted and in a room by 9:15. A steady procession of nurses, students and doctors paraded in and out. He couldn’t answer any of their questions, still insisted he wasn’t sick, still babbled as if drunk. When one asked his full name, he slurred his words. “Whydoyawannaknow?” he asked. Did he know the date or where he was? I cringed. Hadn’t she read his chart? Didn’t she see that he has dementia and lives in a memory care unit? Finally, gritting my teeth, I said that he hadn’t been able to answer those questions for years.

Meanwhile, Nobby had been home alone for hours. Leslie went to him after work. When I got home, the dog, way peppier than the day before, wanted to play. I went to bed.

Wednesday, the doctor definitely ruled out a UTI, flu, pneumonia and several other possibilities, but had ordered blood and urine cultures. Peter was to stay another night. Leslie and Martin brought dinner to me and afterwards, she went to the hospital. He was his goofy self, she texted. He walked her to the elevator so many times, she finally shut the door to his room and told him firmly to stay there.

Peter the ghost.

Always a trickster.

Thursday, Peter was back to his old tricks. He hid in doorways and yelled boo at passing nurses. He joked and teased and wouldn’t give anyone a straight answer. He’d pulled his IV out and was so energetic that they turned off the “fall alarm” on his bed. When yet another nurse arrived, Peter said he wouldn’t answer any more questions. Still she tried. “What hobbies have you enjoyed, Mr. Clarke?” she asked.

He had an devilish look on his face when he pointed to me and said, “Her.” She blushed, I laughed and Peter turned as red as he’d been two days earlier.

By the time I got home, Nobby had discovered he could lick his sutures through the cone, and later still he figured out how to bend the cone for unobstructed access to those pesky stitches.

Friday, Nobby’s doctor called with good news. “The lump was benign!” she said. “I’ve never heard of it, I can’t pronounce it, but it’s something particular to poodles.”  Good news indeed. That evening, Peter was seen eating popcorn while glued to “The Queen” with Helen Mirren. Such was the week that was.

Header photo: Nobby looks good in blue.

 

 

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. 

Moments shared.

A few months ago I muddled through a string of down days. Nothing specific was wrong, but nothing was right either. I sought help from family, friends, doctor, therapist. I grabbed myself by the scruff of the neck and gave myself a talking to as well. Then, I had an “aha!” moment.

Peter was watching tennis when I left him that day. He waved me off and stayed in front of the tv. He didn’t mind that I left. The next day, when I picked him up to go on a picnic with Leslie and Martin, I suddenly, aha, got it.

You see, when I collect him to go for coffee or to the car wash or lunch, I feel guilty because when I arrive the other residents are usually parked in front of the tv or tottering up and down the hall aimlessly. Many don’t seem to have visitors very often, if ever, although there are a lot of hours when I’m not there so I don’t really know.

Peter and I go out the locked door leaving them behind—it’s like picking one puppy over another, I think. Guilt swamps me because I can’t take them too, yet sometimes I can barely deal with my own husband, much less with someone else.

But Sunday when I walked in the residents—Peter included much to my surprise—were batting a balloon around and laughing hysterically. What could I do but laugh with them? Always the clown, Peter tried some of his practiced soccer maneuvers while sitting in a chair. Activities like this may happen often, but this was the first time I’d witnessed it. Aha, I thought.

No sooner had the balloon floated away than a man came in, pulled the piano to the center of the room and started playing and singing familiar old songs: You are my sunshine; Row, Row Row Your Boat; Daisy, Daisy, give me your answer, do; Shine on harvest  moon and on and on non-stop for nearly an hour. The nurses and aides clowned to the music, chair-danced with the residents, and everyone joined the singsong or tapped their feet. I even got Peter to dance with me. He remembered those moves too, although he said he wouldn’t try to “dip” me. Funny, he seemed to remember he’d dropped me once.

Two days earlier the activities personnel had organized a fall festival, complete with games and food, crafts and music, baby animals and even antique cars. Fun-filled late summer days! Moments to remember…

January to December, we’ll have moments to remember…

Excerpted lines from “Moments to Remember,” Al Stillman and Robert Allen, music and lyrics, 1955.

Header photo: Peter and Nobby walk in the mountains, 2015.

 

 

2016 National Society of Newspaper Columnists’ contest finalist. 

Laughs aside.

My husband is nothing if not inventive. Over the past year he has created multiple, novel ways to corral his belongings. He’s wrapped his shirts and trousers in the plastic wastebasket liners, he’s lodged his toothbrush in its plastic container along with six tightly folded handkerchiefs, he’s used the tie-backs on his curtains to bind books together.

Like many residents, Peter packs his belongings to go home, sometimes several times a week; sometimes his room is tidy. He’s stuffed underwear in his shoes, and recently he crammed all of his clothes into a pair of trousers. It looked like the bottom half of a scarecrow, I’m told. If I’d been there I would have taken a picture.

Small items regularly disappear — nail brush, wooden pencils, socks — only to be fished out of his pockets an hour, a day, a week later. One day I noticed he had no sheets or pillow cases on his bed. He’d slept on the mattress with the mattress pad as a cover the night before. Didn’t stop him from sleeping soundly, I’m sure.

Lately, I’ve noticed he often wears two, long-sleeved dress shirts. He isn’t cold, he’ll say, he just forgot he already had a shirt on when he got dressed. One day he was wearing two belts, the end of one fastened to the buckle of the other. “Something’s wrong here,” he said with a silly look on his face.

The clever ways he keeps from taking his medications are not funny, but he’s such an impish personality that he gets away with his tricks almost as often as not. The doctor just increased one medication significantly to curb his too-high A1C. Full blown diabetes is knocking on dementia’s door. That is not laughable at all.

Header photo: Peter enjoys the laughs he creates.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Bright spots in down days.

There have been upsets in the past few weeks that nearly brought me to my knees. I won’t dwell on the details here, now, because there were bright spots that made the period tolerable.

Weeding, usually a chore, gave Peter and me reason to smile. I looked out his window last week and noticed the flower beds had been invaded by tall, prickly weeds that were about to flower and overrun the space. “Let’s go out and tackle them,” I said. He was on his way before I finished my sentence. We worked for an hour and pulled a huge pile for someone else to pick up!

The next day I mentioned to Peter’s longtime helper Mark that Peter wanted to dig up the beds and plant something nice. That very afternoon, by the time I arrived, they’d shopped for flowers and planted them in a large red pot Mark brought from home. A mini-sunflower, blue balloon flowers, and fushia Million Bells now brighten Peter’s view.

Happy in a flower pot.

Another time one of the aides made me laugh when she said that my husband has “favorites” he pushes along the hall in their wheelchairs. The thought that my husband was pushing the “old dears” (a kindly English expression) absolutely astounded me!

Happy on wheels.

Another evening, as he walked me towards the exit, he stage-whispered, “Watch out for ‘im.” He nodded toward another resident who used a walker to toddle along. “‘E’s up to no good.” The other fellow watched Peter out of the corner of his eye, and when Peter drew abreast, they pointed their index fingers at each other and said, “Pow! Pow!”

Happy are six-year-olds playing cowboys.

Another of Peter’s carers was outside watering plants yesterday. “Look who’s out there,” Peter said. His smile was incandescent.

“I see,” I said, “do you want to go help her?”

“I’m going,” he said, and headed to the door. “Oops!” he said and stopped long enough to kiss me. “Bye, luv, see you next time.” He was gone.

Sometimes even “gone” can be happy.

Header photo: A neighbor’s sunny peonies make me smile.

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. 

How lovely are thy branches?

The Christmas morning clatter—save the boxes, keep the ribbon, recycle the tissue, read the directions, where’s the receipt, the vac is clogged—is a week in the past. As I write, the new year is just hours away.  I can’t say I’m sorry to see the old one out.

This dwindling year has been an annus horribilis, as Queen Elizabeth II defined her 1992. She referred to her children’s marital follies and questionable clandestine issues, as well as the costly fire in Windsor Castle, one of her favorites.

Even though this has been an awful year for the Clarke family, we’ve found bright spots to keep us laughing. The house didn’t burn down either.

One of Peter’s new helpers, fascinated by his natural affinity with children, observed him interacting with a little boy. They stood on the fringe of a crowd waiting to see the Nutcracker ballet. I wasn’t there but I’m sure my husband’s eyes twinkled while he made silly faces and crouched to the two-year-old’s eye level. More than once, the boy announced loudly to anyone else in range that this, pointing to Peter, was his New Best Friend.

When I heard the story I smiled in spite of myself and my fretting.

For months I’d wondered how, or if, I would cope, how Peter would do, how would we all manage during the holidays. But, miraculously, my husband had settled into his new “digs” and no longer asked, “Is this my room?” every time I led him inside.

With a lot of propping up from family and friends, I spun through Christmas with more good cheer than I’d thought I could muster. I dashed and twirled and muddled, but in many ways, the week was actually one of the best we’ve ever had. The eight of us kept him busy with meals and snacks, card games, walks, movies, billiards, and chatter. Not that Peter talked much, but he smiled, chuckling, as he listened. If he had been able to channel my dad, my husband might have said, “Well, someone has to listen.”

Header: In 2017, Peter lifted a dug-up pine to bring home with help from Leslie who wore red and white striped camouflage.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

‘To-mah-to!’ ‘To-may-to!’

Peter looked very guilty yesterday when I asked about the green tomatoes basking in the sun on his windowsill. My husband doesn’t like tomatoes, ripe or not, although he did eat some fried green ones accidentally one time.

“Tsk, you picked these from that raised garden outside, didn’t you?” I said. I pictured him skulking along next to the tomato plants that had languished all summer in a too-shady spot. Some resident—maybe several residents—had planted not only tomatoes, but cucumbers, squash, strawberries, and a petunia.

Peter looked like a naughty little boy. I could hardly keep a straight face. “Whoever planted them,” I added, “won’t get to eat them.” I threw in an extra “tsk” for good measure.

“Well! They can have them,” he said, shuddering, “I don’t even like to-mah-toes.”

 

2016 National Society of Newspaper Columnists’ contest finalist. 

‘Aha!’ she said.

Anyone who really knows my husband knows that he has a thing for Mickey Mouse. His obsession stemmed from an outburst nearly 50 years ago when he was a young engineer from England—the great European “brain drain” he said—hired to work for then almighty General Electric. He’d established his quirky personality early on, so he thought nothing of going to his first management meeting wearing an open shirt, no jacket, no tie. He was told in no uncertain terms that he would, hence forth, dress appropriately—necktie, jacket.

The legend is, he returned to his cubicle, slammed down his GE-issue leatherette binder and bellowed, “This is a bloody ‘Mickey Mouse’ outfit.” His colleagues, many of them young hires from Europe too, ran with that. Someone left a Mickey Mouse card on his desk the next morning before he arrived. Just. The. Beginning.

His collection grew to hoarder proportions, especially after we moved to this house which has a tiny room he claimed. At least I could shut the door to keep the big-eared rodents contained.

Last April, in order to make his new new residence more homey — “homelier” his English friends would say — I put  family photos and  English memorabilia around. Wrong. He hid most of the photos, tore some to bits and generally stripped his room of anything personal.

Lately he’s had a lot of way-down days. But during one visit two weeks ago I noticed several female residents had baby dolls to cuddle. Aha! Mickey Mouse could help. Yes!

A plush Mickey Mouse, about the size of a six-month-old infant, was in Peter’s collection. I snuck the little guy into his room when he wasn’t looking and tucked baby M under the bed covers. The following day I asked about the suspicious lump. Without a word, Peter adjusted the covers so I could see.

Every day since I’ve taken some small thing from the Mickey archives—a simple puzzle, a magnet, the new Life magazine’s celebration of Mr. M’s 90th birthday—and left them for Peter to find later.

During my Sunday visit I snuggled Mickey on my lap as if he were a “real” baby. Peter’s eyes twinkled. “He’ll be all grown up soon,” he said. shaking his head.

I played along. “Yes-s, he’ll go away to college, he’ll meet a girl….” What could we do but laugh at our own silliness?

Header: Mickey snug in Peter’s bed.

2016 National Society of Newspaper Columnists’ contest finalist.