To bed, perchance to sleep.

The visiting nurse has always asked the same questions of Peter. I have to answer for him and I nearly always say the same things: Yes, his health is good, yes, his appetite is fine, no, no joint aches, no incontinence, and definitely no trouble sleeping. The man lays himself down and is asleep instantly.

In the past year though, I’ve modified my answer to that question because he started having nightmares. Sometimes he yells, sometimes he talks, but the worst times are when he swings his arms as if punching someone, or kicks with with bruising force.

Of course that disturbs his sleep, although it doesn’t seem to affect him the next morning and he certainly doesn’t remember his nighttime carrying on. He goes right back to sleep; me, not so much.

We’ve always been territorial about our pillows. In fact, Peter is so possessive of his that I put an old, colored case underneath the fresh ones each week, so our pillows don’t get mixed up accidentally. There’s not much chance I would do that anyway. His pillows could be bags of cement; mine could be flattened geese, they’re that lifeless.

About a year ago Peter decided he didn’t need two pillows any more. Each night he placed one pillow on the floor on his side of the bed. He did that for months until I decided to take one when I went to bed to use as a bolster against my back and, not incidentally, as a foil for the frequent nightly soccer goals he scores when he kicks viciously in my direction.

That worked for months.

Then one night I was awakened from a sound sleep when Peter came to bed. Usually he’s very quiet, but that time he yanked away  the pillow I’d pilfered months before. I grumbled but drifted off again. In the morning, his reclaimed pillow was on the floor, smoothed and neat, on his side of the bed.

Yesterday morning I slept late for me — 7:15 — but I lay dozing for a few minutes when, suddenly, Peter sat up, threw his arms in the air, yelled, and fell on the floor with a crash. Had he scored a goal for Fulham in his sleep? I ran to his side of the bed, sure he’d broken a bone or gashed his head. No such drama except for his colorful language.

He climbed into bed and went to sleep at once. Later, he didn’t remember falling nor if he’d been playing football in his dreams. I hadn’t noticed the cut above his elbow earlier, but when he complained of blood running down his arm, I showed him proof of his fall. He insisted I’d shoved him out of bed.

Laugh? Might as well.

 

2016 National Society of Newspaper Columnists’ contest finalist. screen-shot-2016-12-07-at-10-14-53-am

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.

 

2016 National Society of Newspaper Columnists’ contest finalist. screen-shot-2016-12-07-at-10-14-53-am

 

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

 

2016 National Society of Newspaper Columnists’ contest finalist. screen-shot-2016-12-07-at-10-14-53-am

 

 

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?

 

2016 National Society of Newspaper Columnists’ contest finalist. screen-shot-2016-12-07-at-10-14-53-am

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.

 

2016 National Society of Newspaper Columnists’ contest finalist. screen-shot-2016-12-07-at-10-14-53-am

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.

 

2016 National Society of Newspaper Columnists’ contest finalist. screen-shot-2016-12-07-at-10-14-53-am

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.

2016 National Society of Newspaper Columnists’ contest finalistscreen-shot-2016-12-07-at-10-14-53-am

Lights out.

Over the years since his dementia diagnosis, my husband has invented ways to control anything he can in his increasingly hazy life. I’ve written about his stacks of coins, never-ending twig collecting, his sweeping, folding, smoothing, polishing, wiping.

I. Want. To. Scream! And sometimes I do. Having said that, I’m sure he wants to scream too.

His latest attempt at control is not only baffling, it’s downright dangerous. I discovered it several weeks ago when I went down to the basement, a dungeon I try to avoid. Dark at mid-day, the windows are grimy and any light coming in is grayed.

I flipped the two switches several times. Nothing. I scrabbled around and finally discovered Peter had removed the bulbs from the six overhead fixtures. I don’t know why and I didn’t ask because I’m sure he wouldn’t have known either.

I put new LED bulbs in all the sockets. He took them out. I talked to him about the danger of going down the steps and walking around in the dark.

I put the bulbs in again. He took them out again.

Our basement is not a finished space. Hazards lurk — bicycles, tools, piles of newspapers and magazines, chairs, tables, workbenches. I thought I’d solved the problem with my little chat about dangers in the dark.

Today I realized I hadn’t. The bulbs were gone again. Why did I think he’d remember?

Laughs, I’m looking for laughs, but it’s dark in here. A bigger bulb maybe?

 

2016 National Society of Newspaper Columnists’ contest finalist. screen-shot-2016-12-07-at-10-14-53-am

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.

 

2016 National Society of Newspaper Columnists’ contest finalist. screen-shot-2016-12-07-at-10-14-53-am

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

2016 National Society of Newspaper Columnists’ contest finalist. screen-shot-2016-12-07-at-10-14-53-am