The worst weeks of my life so far.

I still remember how wrenching it was to drop eleven-year-old Carolynn at her first sleep-away camp. And I still remember taking Leslie to college, moving her in, and then watching her walk away from me without looking back. Those days still grip my heart.

If you’ve experienced similar days, similar pain, I can tell you they were nothing, nothing, compared to the day you deliver your spouse to a memory care unit for what is supposed to be a month’s respite for both of you.

My husband’s long, long journey from “mild dementia” to “can’t rule out Alzheimer’s” to “probably Parkinson’s, too, with Lewy Body disease” has lasted 15 years. Fourteen-and-a-half of them relatively easy, I now realise. My panicked uncertainty during the time since February when he had a bad fall, followed by weeks of rapid decline have been exhausting, wearing, and sad for me and the rest of the family.

Not so for Peter! The one good thing about dementia — any of the dementias, I suspect – is that the afflicted doesn’t remember anything from one minute, one second, to the next.

After those bleak early February days, I decided to try respite care because I could not carry on without a break from the constant crises. No matter how many times I explained to Peter that he’d be in respite care for a few weeks — a therapeutic lie meaning “at least a month” — he never grasped it. I based my explanation on the number of times he’d fallen since February. He had no memory of that, even with photos as proof, nor of any of his recent falls. “I can’t lift you,” I said, “can’t take care of you when you’re like this.”

Leslie and I had already checked local respite care. The best choice was obvious. Even so, Peter and I coasted along for another few weeks or maybe a month. Push came to shove in April. Peter fell again while we walked Nobby one evening. I’d convinced him to hold my hand and use his cane with his other hand when, suddenly, he smashed face first onto the street. He didn’t have the strength to get himself up and I didn’t have the strength to lift him. I’d been so diligent about keeping my cell phone with me, but we’d just come home from a nice dinner out, and my phone was still in my purse…on the kitchen counter.  Luckily, a young woman came by and helped lift him, then offered to get her car to take Peter home.

Not even seconds after it happened, nor at anytime since, did he remember falling. It was time.The hours, days, weeks, months whipped by so quickly since February while I struggled to keep things “normal.” Yet, the same period oozed too. Years could have passed while I was stuck in a molasses swamp.

I wouldn’t wish any of this on anyone.

The awful April day when Peter, Leslie and I met with the facilities’ director of nursing, the administrator and others is a blur. Though my husband didn’t understand what was going on, he did know he was the center of discussion and he hates that. He understood just enough to know he didn’t like what was happening. His Mt. Rushmore persona was apparent. I reached for his hand, but he pulled away angrily.

Between then and five days later when he was admitted, I prepared for his move as if I were taking him to college or to camp. I bought him new underwear, new socks, tubes of toothpaste, cheery yellow sheets, and bright blue towels. I packed favorite picture books about England, pictures to hang on the walls, photos to put in a drawer, his special tea and coffee mugs, jigsaw and crossword puzzles, pencils, pens and paper, Sudoko books. I washed and ironed his shirts and trousers and polished his shoes.

Leslie and Martin helped with the move-in. Stoney silence from Peter as Leslie and I gabbled and tried to lighten the mood. Martin took Peter to lunch while Leslie and I finished making the room as homey as possible. We added finishing touches the next day. Peter was almost jovial. He managed a few silly jokes and we breathed sighs of relief.

By the time all the paperwork was completed two more days had passed and the meter was running. A private room in the best facility around doesn’t come cheap. Thank goodness for long term care insurance. When I finally took my husband to be admitted, he was practically mellow. Whew.

Ah, but that was only day one. A Tuesday.

Header: Peter in the garden surrounding his new home-away-from-home. The fence, he has since explained with a twinkle in his eyes, is climbable!

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Do you hear what I hear?

Peter and I were getting ready for bed. “I’ve lost me wallet and me keys,” he said. He patted his pockets to confirm his fears.

Peter sleeps.

“You had them earlier,” I said. He loses them so often that I’m immune to his panics. “Let’s go to bed. They’ll show up in the morning.”  Uncharacteristically, he gave up his search. He was as tired as I was, even thought he’d slept most of the four hour drive to Ohio.

We were there for grandson Miah’s graduation from Hocking College. The night before, eleven of us had celebrated with an excellent and jubilant dinner, followed by the ceremony Saturday morning. We ate lunch at place I’d frequented during my years at Ohio University, followed by a campus tour where I recognized only the oldest parts of campus and, later, pizza and a movie. Way more goings-on than Peter and I have in a week, much less a weekend.

Sunday morning, as we rushed to get ready to meet the family for breakfast, Peter patted his pockets again. “I’ve lost me wallet and me keys.”

“Coffee first, then we’ll look.” The strange locale, unfamiliar lodging, and hectic pace had muddled my already muddled husband even more.

At breakfast I mentioned the “losses” to Martin. He was positive Peter had them the previous evening.

“I’ll help you find them after we say goodbye to Miah,” he said. Suddenly, simultaneously, we  said, ‘trackers.’ Didn’t you put one on Peter’s keychain?” Martin asked.

“Yes!”

“Do you remember the password?” Martin was doubtful.

“Ha! Yes.”

TrackR™

A TrackR™ is an inexpensive gadget I bought to supplement the very expensive GPS/watch, PAL, that Peter hates. PAL (protect and locate) helps me to find him if he decides to take another five-hour walk away from home or gets lost on a short walk. He refuses to wear it inside; so far though, he hasn’t taken it off outside. In fact, he shouldn’t be able to remove it at all. The locking mechanism — I have the “key” — is foolproof, supposedly. It is not, however, engineer proof. He can and does remove it when he gets back from walking Nobby, but often “loses” it in the house. Hence, two 50-cent-sized TrackRs, one attached to his keys, one to Nobby’s collar.

So, there we were after breakfast, Martin holding my phone, already paired with the TrackR app, as we listened for the shrill beep.

“I hear it!” Martin said.

“I hear it!” Peter said.

“Hear it, Judy?” Martin asked.

“No-o.” (The one drawback to TrackR is, I cannot hear the beep, although I can locate it with my phone.)

“Bathroom,” Martin yelled. We crowded into the tiny space, laughing because there was nothing there except tub, toilet, two wet towels…and us.

“No, out by the sink,” Martin said. Nope.

“The bed.” Peter pulled the covers up and shook them. Nothing.

“The sound is right here,” Martin said, “so close. Where is the darned thing?”

“Wait, what’re we looking for?” Peter asked.

Martin and I were dumbfounded. “Your keys. Your wallet.”

“These?” he said, holding his keys up.

We howled.

“Where’s your wallet then?” Martin asked.

“Here,” Peter said. He pulled it out of his pocket. We’d never thought to check his pockets again because…well…because. When and where he found them we don’t know. We do know why he didn’t remember he’d “lost” them: he simply can’t remember anything.

It felt good to laugh uncontrollably after two-months with nothing to laugh at. Side-splitting hilarity was the perfect end to a fun-filled, celebratory weekend.

Header: Family and friends,Samantha, Kenna, Lucas, Leslie, Miah, Caitlyn, Martin, me, Peter, Mason, and Tim.

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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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Knock, knock. Knock, knock. Knock, knock. Knock, knock.

Knock, knock. “Who’s there?” I yelled. Oh no, I thought. It was 10:30 and I was in the shower, rushing to get ready to run an errand before I met friends by 11:30 for lunch. 

“Where are the keys to my car?” Peter asked from outside the door. He hasn’t driven for years, but Bill had arrived to take him and Nobby for their weekly nursing home/ therapy dog visit.

“Black chair in the dining room,” I hollered. I didn’t think he’d remember that by the time he got downstairs and he didn’t. 

Knock, knock. “Where are the keys to the car?”

“Black chair. Dining room. Orange ribbon tied on the key.”

By the next knock knock I was toweling off. Peter cracked the door to ask, again, “Where are the keys to the car?”

“Peter-r! Black chair. Dining room. Orange ribbon…,” I said, “but wait!” I had a brilliant idea. I grabbed a pad of paper off the nightstand and wrote black chair, dining room, orange ribbon. “There you go,” I said.

Minutes later, he was back holding my keys in his outstretched hand. “These?” he asked.

Argh-h. “No! C’mon, I’ll go with you.” I wrapped my robe around me, ran downstairs to the black chair in the dining room and picked up the key with the orange ribbon. “Here,” I said as I handed them over.

“Oh-h, I didn’t look there,” he said.

By then, I didn’t have enough time to go order the new refrigerator I’d been researching for weeks and that we’d needed for months. Instead, I went directly to the restaurant and vented to my friends about my morning. Of course they laughed, but I could’t, not then. By the time lunch was over I’d convinced myself I could place the fridge order the next day. It would be fine.

Thursday I managed to get out of the house with just enough time to take care of the order before an appointment. But I was a day too late take delivery the next week. Now it’ll be the end of November. Santa Claus will be knocking on the door by then. 

These days the ho, ho, ho’s are harder to come by, but still I look…

Knock, knock.
Who’s there?
Doris.
Doris who?
Doris locked, that’s why I’m knocking.

He was polite.
Too polite.
He knocked before he opened the fridge door.

Knock, knock.
Who’s there?
Amanda.
Amanda who?
Amanda fix the refrigerator.

Groan.

 

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There were thirteen from our group of  twenty-seven at lunch last week. We usually cause quite a ruckus, chattering and laughing the way ladies who lunch do. Wednesday was no different.

At one end of the table, four of the six of us talked about dementia, more specifically the dreaded “A” word, Alzheimer’s Disease.  What I’m experiencing with my husband now is only one view of what others have experienced with their loved ones.

After I got home I tried to remember how many of the thirteen had been, or still are, on the same one-way road I’m on. Seven! Seven out of those thirteen women have cared for, suffered with, and lost or are losing mothers, sisters, aunts, brothers, husbands. Three more in our larger group are affected in one way or another, too.

There’s no laugh in this post today nor in any of the grim statistics that fall under the umbrella of dementia. But there are these thoughts about the importance of laughter from the Central California Chapter Alzheimer’s Association newsletter:

“There is nothing humorous about dementia. However, laughter can help dementia caregivers and improve the quality of life for those afflicted by the disease. Studies show that laughter boosts the immune system and triggers the release of pleasure-inducing neurochemicals in the brain. In terms of dementia-specific benefits, the greatest advantage of humor is that it provides sufferers with much needed mental stimulation. Humor challenges our loved ones to engage their minds as fully as possible [and] it’s also an effective tool for keeping social links active and reducing…paranoia and agitation that many […dementia patients struggle with.]

— Marcy Oswald, MFTI, Education & Care Specialist

 

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Laughs every day are harder to find.

Maybe it’s the shorter days, the longer nights, the unseasonable cold eight weeks ago, the unseasonable heat this month, or maybe the light at the end of the tunnel burned out, but I’ve really had to search for laughs to drag me, us, along recently.

One evening.

Leslie, Martin, Peter and I had a Friday night dinner and movie date, but there was a line out the door of the restaurant we’d chosen. We had little time to spare, so we ended up at the one place I’d said no to: Red Robin. Not that there’s anything wrong with it, but Peter had been there twice that week.

We’d no sooner ordered than another waitress came by and skidded to a stop beside our table. “You didn’t come say hello to me,” she said, grinning at Peter. “What’s up with that?”

Peter laughed. “I didn’t know I was coming here.”

“I’ll let you off,” she said, “I wasn’t supposed to be here tonight, but someone called in.” She looked at the rest of us. “He makes us laugh ordering ‘cish and fips’ when he comes for lunch.” Peter grinned. They make such a fuss over him at Red Robin. The bonhomie reminds him of an English pub.

Later that evening.

We were about one hour, thirty minutes into a one hour thirty-seven minute mildly entertaining movie. Peter fidgeted and twisted in his seat. Bored, I wondered? Hm, no. “Do you need the loo?” I whispered.

He was annoyed that I asked. But suddenly he got up, felt his way along the row, down the few steps, and he was gone. “He won’t know how to get back,” Leslie said, as if I didn’t know. I groped my way out and followed.

In the hallway Peter fumbled at a door marked with the international symbol for family restroom. “Can I go in here?” he asked. I nodded. He dashed inside.

Even though the movie was a bit of a ho-hummer, I wanted to see the ending. I paced outside the theater door, then noticed the sign above said “Blade Runner.” I looked around. None of the doors’ signs said “Home Again.” Ack! Was I lost? By the time Peter emerged, I’d realized our film only ran at 7:30. “Blade Runner” would be shown at 10:00 in the same theater.

Back inside, just before the closing credits, I told Leslie I’d gotten confused. Of course she laughed as she does, but I didn’t try to explain to Peter. He would’ve cracked up knowing I’d been lost…momentarily.

The next morning.

Peter was in the kitchen clattering around. I pictured dishes suffering new chips and silverware headed for the waste bin instead of the dishwasher. I went to check. Ah-h!

“Peter, those haven’t washed yet,” I yelped when I realized he’d taken dirty plates, glasses and silverware from the dishwasher and put them into cupboards and drawers. He growled and stomped away. I reclaimed the dirty unwashed.

That evening I took a couple salad bowls off the shelf. Both were encrusted with bits of tomato and lettuce. Ready made salad, right out of the cupboard! What a concept.

Peter had the last laugh, because his mistake was my fault. I hadn’t switched the color-coded sign I stick on the dishwasher from  yellow/clean  to pink/dirty. How was he supposed to know the things he’d removed were dirty?

 

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Saturday morning I circled the soccer matches — “football” to my English husband — in the sports pages and wrote the channel numbers beside each. I was determined to forge a better day than Friday had been.

When Peter finally got up, the first game — ManU at Liverpool — was about to end. “This one’s nearly over,” he said, noting the score was nil-nil with seconds to go.

“Yes, but look, Chelsea plays Crystal Palace at ten,” I said. “Then, Arsenal at Watford at half past twelve. They’re your teams, aren’t they? Should be good matches.”

He nodded. “Fulham! Arsenal! Chelsea! Crystal Palace and Watford don’t have a chance.”

“Funny, you forget all sorts of things, but you don’t forget your football teams.”

“I don’t forget anything,” he said.

Hmm, I thought. How I wish that were true.


Crystal Palace shocks the boots off Chelsea, 2-1

Watford kicks in the Arsenal, 2-1
No joy for the Chelsea and Arsenal fan in our house.

 

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Find Peter!

Nearly two months have passed since Peter took a five-hour walk away from home. That’s eight weeks of frustration for both of us, him because I had to follow along when he walked Nobby, and me because I had to follow along when he walked Nobby. I’d learned the hard way that I couldn’t let him go by himself any longer.

It was mid-July before I decided on and ordered Peter’s PAL (Protect and Locate) device sold under the umbrella of International Project Lifesaver.  Then, several more weeks passed and multiple shipping hiccups occurred before it arrived, just hours before we left for a ten day visit to Carolynn and Bill. Not that I had any warped ideas that I could set it up myself!

Leslie and Martin applied all their considerable technological know-how and stick-to-itiveness to get it working while we were gone. Even for them it was not easy — “You really could not have done it, Mom” Leslie said — but now, at last, Peter is “free” again.

Happily, and completely unexpectedly, he didn’t object to the clunky-looking “watch.” Yes, it is a digital watch, but more importantly, it’s a tracker too.

“With this,” I told him, “you’ll be be able to walk Nobby by yourself. Without it, you’ll be stuck with me going along every time.” With no hesitation he chose his new PAL over me tagging along. No doubt about where I am on the totem pole!

He had a lot of questions, but then he would. Tucked inside his blurring brain there is still DNA with “engineer” written on it. “How far can I walk?” was his first question.

“Not as far as you walked the last time you walked alone,” I said, my left eyebrow on high alert. His slight nod told me he remembers, if foggily, that he walked a long way the wrong way in hot sun. Rightly or wrongly, I continue to force him to remember what he’d like to forget.

His second question was, “Will it tell me when I’ve gone too far?”

The short answer was, No. Later, it occurred to me that I should have said, If you’d ever agreed to using a cell phone, then I could call you when the tracker shows you’ve gone too far, or you could call me for help. But that would’ve been thirty-eight wasted words.

Each time he repeated his two questions, I reminded, “All you have to do is walk. I have to be ‘tuned in’ for a possible alert, check my phone for texts, the computer for a map, and be ready to  jump in the car to pick you up.”

He shook his head. “How does ‘it’ know?”

“Smoke and mirrors and a satellite in the sky,” I said.

He shook his head again. So many technological advances have taken place since the last time he was curious enough show interest.

It took all Leslie’s considerable teaching skills to pound the multiple steps into my head. She already knew I had little capacity to absorb any more high-tech stuff. I wouldn’t be surprised if she had a lesson plan labeled, “Teaching Mom.”

Nobby is little miffed.

Header: Nobby anxiously watches for his master.

 

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Caregiver’s worst nightmare.

Five weeks have passed since Peter went for a walk without Nobby, without my knowing, and without realizing he was on his way to lost.

Five weeks that I’ve been on alert setting door alarms, walking with him when he takes the dog out, researching a tracking device he would tolerate.

Hounding, watching, nattering.

Five weeks trying to make him understand that he can no longer walk out with or without the dog. Five weeks of him slamming doors and stomping to the basement. No, he doesn’t want to be “locked in,” tracked, or told what to do. Who would?

Other caregivers have a much worse go than I do. Others aren’t as fortunate to have outside help and helpful daughters, plus the wherewithal to cover expenses. But that doesn’t stop me fuming over our situation, or trying to make things right when they can go so wrong, so quickly, with no warning.

My caregiving ways reflect my general “fly in the face of convention” attitude. I’ve never done things the easy way. “My way or no way,” Peter would say say. Oh, I do read articles, blogs, and books about dementia and I’ve learned. I’ve listened to advice from the doctor, our daughters, and friends, and I’ve acted upon much of it.

But, I do ignore some of the basic no-no’s for dementia caregivers including don’t argue, don’t ask if they remember this or that, and don’t point out that they’ve forgotten again.

Peter is “luckier” than many. Although his dementia is markedly worse than just a few months ago, he does understand what is happening to him, not because I’ve used the dreaded A-word, but because he just seems to “get it.” He’s an engineer, a problem-solver, who still has a determined stick-to-it-iveness that helps. I’m sure of it.

So, I do point out things that are arguable, I do ask if he remembers then tell him a story about the memory I’ve mentioned, and he does laugh with me and the family when we point out, jokingly, that he’s forgotten something.

Wrong? Perhaps, but for us, for him, it seems to work, seems to keep him in the moment, the now, however fleetingly.

A few days after his long walk, I drove him from our house along the route I think he took to end up five miles away. He was amazed. “Why’d I do that,” he kept asking. “How did I get there?” I did it to impress upon him, as much as possible, that his “escape” was daring and scary, for him and for all of us who searched.

Ignoring the wisdom, until a month ago I did let him walk the dog on his own, and I looked for tracking options only for future reference. Even having experienced that worst nightmare, I think I’d do the same again. He had his freedom as long as possible and now it isn’t possible anymore.

Would I recommend my approach to others? I would not. Every situation is different and what works for one likely wouldn’t work for another.

Oh, yes, it could have been a lot worse. The ending could have been tragic, but it wasn’t. Peter’s still here to growl at me every time I say he must wait to walk until I put my shoes on. He still has to listen while I explain why it’s necessary.

And he’s still here to make me laugh.

Header: Rainstorm over Alaskan waters, 9/7/06

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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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