‘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.”

 

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‘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.

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Ninety-eight days and counting…

Ninety-eight days have passed since my husband was admitted to memory care, first for a month’s respite then, sadly, as a permanent resident.

Ninety-eight days with ups and downs as stomach-twisting as a rickety rollercoaster ride.

Ninety-eight days of uncertainty, confusion, frustration, anxiety and sadness. And that’s just my list. For Peter, I’d add to those anger, fear, anguish and longing.

Since those first heart-breaking mid-April days — I remember them as very cold, though they were not — the succeeding weeks have glommed together like cheap paper towels. There’ve been bad days and good, more lows than highs, a few baby steps forward, but more giant steps back. Silly me, I thought when someone else took responsibility for my husband’s safety, feeding and care, I would be able to catch up with myself. Not so. But it’s not about me anyway.

Within hours of his admission Peter had a meltdown that prompted a call from the evening charge nurse. Would I talk to him on the phone to see if that would help? Yes, I would. When that didn’t work, would I come to try to calm him? Yes, I did. It took several hours, but he was laughing by the time I left. Oh, I’m no hero, but I generally know which buttons to push. The staff had yet to learn.

Within seventy-two hours he’d gotten out of the facility, even as his ankle bracelet screeched while he walked through the main door. A maintenance man found him behind the building near an area surrounded by woods.

By the third, maybe fourth, week he started to acclimate a tiny bit.

The food, though nutritious, does not appeal to my picky husband. And showering with a female aide hovering nearby is not gonna happen. Without me to nag him about changing his clothes, he doesn’t. Instead of putting his things in the laundry, he hides them in the waste baskets and they’re gone forever. His slippers, leather scuffs, have vanished several times. Once I found the left one in a wheelchair parked outside another resident’s door. A few days ago I found the right one under a table in the shower room. But the left one had disappeared again. Peter isn’t necessarily to blame. Residents in memory care units are notorious for “stealing” from other residents.

Houdini could be his middle name.

Peter advises the cat on how to escape.

No, I really can’t blame him for any of this. No one can know what it’s like to be so confused and disoriented all the time. During his first 12 days there, he’d had relative freedom. But he was quickly moved to the “lock-down” wing after he busted out a second time. He left for an outing with Mark in the morning, but returned to a different room that afternoon. He didn’t even realize he’d been moved. And a few weeks later when we were finally able to move our furniture in to replace the borrowed stuff, he never noticed the change.

So, he’s safe under lock and key…touchpad and code.

Except he isn’t. My husband is an escape artist. He snuck out in my care, and when he wants to get out, he continues to walk out right past the nurses. For years Peter took Nobby to visit the residents where he himself now lives. He knew the code to get into the locked areas and how to get out. Served him well when he was the one on the inside. Frankly, I laughed when I heard that he remembered the code. He can’t remember names or places or much of anything at all, but numbers? His engineer’s brain still computes with reasonable ease. Then, too, he can read. There’s a sign on each locked door that says: Press for 15 seconds and door will open—fire code requirement.

It’s all about control.

From the first days he looked for ways to maintain control. Leslie and I set up his first room and made it as homey as we could. It was a large attractive room with a pleasant outlook. He very quickly rearranged things to suit himself—he hid the family photos, stacked books and puzzles in a corner, and put his tooth and hairbrushes in the little refrigerator that was left behind by the previous occupant.

Less than two weeks after he was moved to the more secure area, he started conjuring more creative ways to dominate his surroundings. He folds his clothes and conceals them in pillow cases, then secures them with his belts or wrapped in his shirts. Lately he’s wrapped everything, gift-like, in towels or sheets. He stashes handkerchiefs in the travel toothbrush holder he requested, not for his toothbrush, but to conceal whatever he could stuff into that little green cylinder. He hid family photos underneath a framed picture of his dad.

In more recent weeks he started taking the screens out of his windows. Almost every evening he disconnects his television, but two days ago he hid it. From himself or from me? I found it and hooked it up again, even though I always say I won’t.

Days 94-98 have been more troublesome. No matter howfrustrated I get, I know Peter is a hundred times more frustrated—he isn’t to blame for his shenanigans. I tell myself that while I bang my head against a brick wall.

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Pick up sticks? Who me?

On this frigid April day I never dreamed I’d have reason to write a sequel to my most recent post, “Between the sticks.” I expected to be writing about what’s going to happen tomorrow.

This morning I took my husband for his annual check-up with the dermatologist. Right away, Dr. J asked Peter if he’d been alright, had anything to report?

“No, I don’t have anything, but I’ll be she does, ” Peter said, nodding at me.  The doctor and his nurse laughed, as they always do, at Peter’s quick humor.

Dr J looked to me for answers. I told him about the several spots on Peter’s head, ears and arm, and some on his back. He nodded and began checking methodically. It was so cold in the exam room that the nurse hadn’t given Peter a gown. “Too cold,” she said, “doctor will just pull your shirt up in back to examine you.”

Turns out, Peter had put two shirts on — another cause for chuckles — so pulling them up was a struggle. Dr. J took one look at his back, one spot in particular, did a double take and said, “That’s a tick!

“A TICK?” I yelped.

“Sure is,” he said, as he asked  the nurse to fetch tick-removing supplies. He numbed the area, pulled the little bugger out, then drowned it in alcohol. Then he wrote a ‘script for Doxycycline Hyclate. “Better to be proactive and start this right away, than to wait six weeks for the lab analysis to finish,” he explained.

Lyme Disease is the unwanted gift a tick bite brings to people and their pets after they’ve feasted on infected deer and mice. I felt foolish for having seen the spot but hadn’t realized it was a tick. At least it wasn’t engorged and, really, it looked like the other two spots I’d noticed. Thank goodness they weren’t ticks as well.

Peter and I don’t need anymore stumbling blocks right now, but try explaining a tick and what its bite can cause is like explaining why pigs don’t fly to a two-year-old.

“No more picking up sticks in the woods,” I told him.

“Why?” he asked. I explained ticks live in woodsy areas. I explained that we give Nobby tick medicine every month to keep him safe, and Nobby doesn’t even have access to the woods.

“But I don’t go in the woods,” Peter said. “I never do.”

I rolled my eyes and didn’t try to explain further. Too much information is as bad, in our case, as no information at all.

 

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The second worst day of my life so far.

A policeman stood at the door.”Afternoon, ma’m,” he said. “Does your husband walk a big white dog?” I nodded. “He’s had a fall. An ambulance is on the way.” I grabbed the door to hold myself up and he added quickly, “He’s all right, but they’ll take him to the hospital as a precaution.”

“Come in and lock the door behind you!” I yelled, while I ran to turn the stove off, grab my purse, and dash out the side door. “Your dog is OK, too,” he said as he followed me through the house. “He’s right beside your husband. Another policeman will bring him home.”

Peter had fallen — face-planted — into a shallow ditch less than a block from our house. It had rained all day, the ditch was running. I’d fastened his GPS watch around his wrist before he and Nobby left.  Minutes later, I saw that he’d taken the watch off, defying me as he does, and left it the kitchen. If a passer-by hadn’t seen him and called 911 I would have had no way to find him when he didn’t return. It could have been worse.

But “worse” was yet to come.

A second policeman — the same one, incidentally, who helped find Peter last summer when he got lost — took me to the ambulance. He was already on the gurney when I climbed in behind him. He turned his battered, muddy face toward me and said, “Uh oh, now I’m in trouble.” The EMTs laughed. He kept them entertained all the way to the hospital.

In the ER he kept up his joking to the amusement of the various people attending to him.  When two young female aides left the room, one said, “Oh, he’s so cute!”

Mm.

His right hand suffered the worst physical damage — a wide, deep gash required stitches to hold his tissue-like skin together. Numerous other bumps and abrasions punctuated his upper body and knees, including a goose egg and black eye that bloomed later. As I gathered up his bloodied, muddied clothes he said, “S’OK, those will come clean.” Nuh unh, I thought. Not enough Oxy-Clean in the world to get that out.

Peter’s hands and face had been cleaned up by the time the ER doc returned to stitch his hand. “Oh, you’re quite handsome under all that dirt,” she said.

He grinned. “I’ll have to do it again then.”

Turns out, those few hours in the ER were the easiest of the next two weeks. He was understandably confused that Sunday evening, but the next day he awoke a different person. In the next few days he aged ten years.

From the start he remembered nothing about his fall, not that he would, and his few previous memories were erased too. He insisted all along that he didn’t hurt anywhere, though he must have, but his gait was stiff, and he shuffled as if he’d suddenly developed Parkinson’s. He struggled mightily to get out of his chair, even with a cane. He refused my help angrily, viciously, so unlike the man I married. He became argumentative and unreasonable in ways that he’s never been. He had no appetite, strange for him, and he slept soundly twelve or more hours a night. “I’ve nothing else to do,” he said. The Olympics’ coverage saved us.

Help dressing or undressing? “NO, I don’t need you.” Yet it took him twenty minutes to pull one sock off, and forty minutes, with my unwanted assistance, to get up the stairs to bed.

A physical therapist will assess him soon, there’ll be additional lab work to rule out other issues — the urine-analysis showed no UTI so the “hope” that spurred is gone. I may hire additional help, or may go to a nursing home solution. In the meantime, our sons-in-law have made the downstairs more accessible. Moving a bed down is a possibility.

Peter went from being a whisker shy of his eightieth birthday 18 days ago, to looking and acting as if he were ninety.

Still, not all news is bad news. Between the time of my previous post and now, he turned a corner. His dogged determination and bloody stubbornness, that usually makes me tear my hair, has instead helped him rally. He’s not back to where he was before, and never will be, but he’s so much better. But then, anything would be an improvement from the blood, rain and mud drenched man the ambulance crew hauled out of that ditch on February 11.

Header photo: In the ambulance, Peter regaled the EMTs with his patter . From the back, he looks unscathed.

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Found: missing ho, ho, ho’s.

As the days get shorter, so does my husband’s ability to remember anything — anything — for longer than a few seconds. My ability to laugh through tears has faded with the waning year. Peter’s downward skid is out-of-control, a luge slider run amok.

Even though my journalistic conscience has prodded me to write a post, I’ve been too tired, exhausted really, to come up with anything that would fit my charter: to search out laughs to ease the dementia-clouded days.

Last week, finally, some blog-worthy chuckles presented themselves. I’d combined a trip to Roanoke for our annual  Christmas lunch with having my car serviced at the dealership. Turned out to be a very long day. We did a little shopping, had a lovely lunch at Montano’s and even shared a slice of carrot cake for dessert. Afterwards, we headed to the dealer for a recommended oil change and a quick tweak to my car’s “Eyesight” feature.

“Quick” it was not. What I thought would be an hour’s wait turned into more than three. It was a comfortable enough, pleasant room with free snacks and a TV. I’d taken a book. Peter huffed and wiggled and made endless cups of coffee.  After some time, he asked, “What are you here for?”

“Just service,” I said.

“When will they call you in?”

“What do you mean?”

“When will you see the doctor?” he asked, waving his arms at the other people waiting.

“I’m not waiting for a doctor,” I laughed, “my car is getting checked!”

“Well I didn’t know,” he mumbled, adding, “then why are we waiting?”

“Because we need the car to get home,” I said. “Long walk from here.”

He went back to the old magazine he’d looked at several times. Before long, he asked, “What are you here for?”

I laughed again, explained again, and then again.

Shave and a haircut.

The next day I ginned up a “therapeutic fib” to get my reluctant husband to a barber for a much needed beard trim and shave, plus attention to anything else that needed doing from his neck up. (The day before, I’d tried to lure him into a barber near Montano’s, but he dug in his heels at the door like a five-year-old going for his first haircut. He would not budge.)

This day I made an appointment.

I faked a note from Leslie to encourage Peter to cooperate and asked his Thursday helper, Mark, to give the card to Peter and say Leslie wanted him to get spruced up — he’ll do whatever she tells him to do. Mark endured the barber shop trip in my stead and took photos for me.

Pete spiffed

Afterwards Peter looked quite spiffy with his beard trimmed neatly, neck shaved, eyebrows tamed. I praised him lavishly, but he was confused. “What are you on about?” he asked, irritated.

“Your hair! Your beard! You look terrific,” I said.

He had no clue why I was gushing — he hates gushing. For all his grumbling, he’d dozed right off in the chair and awakened well groomed, without even knowing anything had happened.

 

 

Header: Peter sleeps in barber’s chair.

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Interludes: Laughs count.

Peter had just gotten out of bed when Bill arrived for their Wednesday morning nursing home outing with Nobby. Never one to be rushed, especially not in the morning, Peter sipped his coffee, nibbled at his toast, and wiped (and wiped and wiped) the kitchen countertop.

He will not be dissuaded from that task once he starts. Bill and I smiled at each other.

“‘Mrs. Clarke,'” I said, “are you about finished?”

Bill chuckled. “He’s a good little ‘housewife,’ isn’t he?”

Peter, his back to us, never missed a beat. “Well someone has to do it, don’t they?” He turned slightly to aim a dagger-like look in my direction. Bill chortled and slapped his knee.

If I hadn’t needed the laugh, any laugh at all, I would’ve been upset by what my husband implied. Humph, as if I wasn’t the one he’d tried to convince not to bother about keeping the house clean and tidy all these years.

* * *

Lunchtime at a favorite restaurant the same Wednesday. Peter tried his well worn joke on our waitress, a sweet young lady who’d been working at the Blue Apron for just a week. When she asked how our our meals were, he said, “Oh, terrible.”

“Oh, you’re a tease, aren’t you?” She caught on quickly. His face turned red as he laughed. I rolled my eyes at her and shook my head as if to say, “I can’t do anything with him.

Later, a waiter asked the same question. Peter took a deep breath and said loudly, forcefully, “Terrible, just terrible.” He even frowned.

The young man howled. “Y’know, my fiance told me she didn’t know how she’d be able to deal with me when I’m old and gray, because I’m just like you. I love to tease and laugh. I want to be just like you when I’m your age.”

I rolled my eyes again, but I couldn’t help but laugh.

* * *

Later that afternoon, completely tuckered out from shopping for a refrigerator, I put my arms around my husband, and lay my head on his shoulder. “I need a hug,” I said.

He’d been staring at a kitchen cupboard as he does when he’s trying to remember what he was looking for. He shrugged my arms off and said, “And I need some bread.”

That laugh wasn’t as good as a hug, but it helped nonetheless..

Peter tries to decide what to order.

 

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Love and loneliness sit together.

Maybe I shouldn’t have been so quick to write a post about Peter’s acceptance of his new wrist-hugging PALLess than two weeks after I introduced him, he rebelled:
He tries to take the “watch”off, by pulling, tugging, fiddling with the locked clasp. (I have the unlocking device.)
He purposely ignores and/or forgets — a bit of both, I think — the time I ask him to to return.
He gets mad when I pick him up after tracking him, way out of range, an hour later.
When I put a note on his watch to remind when to be home, he stuffs it in his pocket and forgets about it. As he would, of course.
He always insists he knows where he is when he’s out walking, but when I ask where, he says, “I don’t  know, but I know.” I actually understand what I think he’s trying to say.
When I pick him up after he and Nobby have been gone way too long, he doesn’t recognize me or my car. When I beckon to him, he waves politely, and keeps walking. Nobby knows and he’s tired. He drags Peter to the car.
Because my paper note didn’t work, I try to write on his hand. Angrily, belligerently, he jerks away. “The only option,” I say, “is that I walk with you.” I set the alarm on my phone for fifteen minutes and walk along. Though he’d insisted he would be back, when my alarm beeps, he says I didn’t tell him he was supposed to be home at a certain time.
“I will not be told when and where I can walk,” he says repeatedly. “You don’t tell me what I can and cannot do.” I try to make him understand that I want to make sure he’s safe. “We’ll see about that,” he mutters, stomping like a child.

Ah, I don’t blame him for any of it. He can’t help it, I know that. I’d hate it too. Everything, everything, about dementia — Alzheimer’s — sucks! I’d be way worse if I were in his shoes.

To anyone who has ever known my husband, these words don’t describe the lovable, affable Peter of their acquaintance, the man they worked with, laughed with, caroused with.

He isn’t the lovable, affable Peter any longer. He knows it. I know it. He hates it, I hate it. At least I still see brief glimpses, some sparkles and shy smiles of the man I fell in love with.

I created a piece that is a tribute to life and society. Love and loneliness are a part of society and The Lovers’ Bench combines them both. At one point or another in our lives, we all sit on this bench,” artist Lea Vivot says of the entranced couple and the lonely woman beside them.
Header: Lea Vivot’s “The Lover’s Bench,” Montreal’s Botannical Gardens, 2009.

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‘Who in the world am I?’ Alice asks.

“You’re not working a puzzle,” I said to Peter one day at lunch. “Have you finished already?” (He always does a Sudoku, Wordy Gurdy, or crossword; I always have my nose in a book.)

“A puzzle?” he asked. “Do you mean you?”

I laughed. “That’s good,” I said. “Haven’t heard that one before.”

Peter laughed too. “Neither have I.”

That little glimmer of the old Peter was a peak in an otherwise down day. Our laughs lately are a bit further between, but we milk the ones that come along.

This 500-piece “Alice in Wonderland” jigsaw puzzle was a family Christmas gift several years ago. Over the past weeks, Peter put it together again, with more than a little help from Samantha, Leslie and Martin. I’ve often thought Peter’s dementia…Alzheimer’s…must make his head feel jumbled like Alice’s: “I wonder if I’ve been changed in the night? Let me think. Was I the same when I got up this morning? I almost think I can remember feeling a little different. But if I’m not the same, the next question is, ‘Who in the world am I?’ Ah, that’s the great puzzle!”

Indeed.

 

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‘What do I want?’

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.

 

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