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

Cork, blown!

Individually, the silly, almost daily things we blame on the dog — Nobby did it — aren’t really worth mention: a china tea cup in the butter compartment; tiny potatoes tied up in a green newspaper bag and tucked in with the bread; Peter’s three nights in a row sleeping on the couch because he forgot to come to bed; him not only mowing the grass two days in a row, but three times in one day. All quickly forgotten by him, but I’m buried in what feels like wet sand.

Most Alzheimer’s caregivers know that “going with the flow” is often the best way to handle such things. But sooner or later, even the most patient of them — us — will blow a cork, a lid, a fuse, a gasket.

I am not a patient caregiver.

I’d sorted the edges of the 252-piece puzzle Carolynn brought to me, and put about half the frame together on the kitchen counter. The rest, I’d organized by colors on paper plates. Peter enjoys jigsaws and he’d placed several pieces while waiting for dinner one evening.

Next morning, I came downstairs, turned the coffeemaker on, filled Nobby’s bowls, sorted our daily rations of pills, then noticed — WHAT? — the puzzle had been cleared away, all the pieces were back in the box. The paper plates were stacked neatly, empty.

My lid hit the ceiling. I needed a new fuse. My gasket wanted replacing.

In the previous several weeks I’d warned, if he didn’t stop moving my “stuff,” I would wreck his towers of coins, even knowing that his need to organize helped him control his out-of-control brain. So that morning, sputtering like a kettle on the boil, I stomped down to his desk, took a deep breath, and raked my hands through his stacks of quarters.

I was furious, childish beyond reason. How absolutely infantile of me! If Peter noticed at all, he never said, and I’m sure he was quite content to re-stack the coins and make order out of the chaos I’d caused. That evening, I sorted puzzle pieces once more and started putting it together again. To be safe, I wrote “LEAVE THIS ALONE” on a paper plate.Thursday,  we browsed through a local thrift shop. From a table laden with jigsaw puzzles, Peter picked up a brilliantly colored 1500-piece one that would measure 33″ x 24″ when assembled. He debated buying it — too intricate, he wondered? In the end, he paid the 53 cents and brought it home. In the days since he has done little else but sort. By last evening, he had more than half of the outside in place, the rest of the edge pieces set aside, waiting.

Will I box the pieces up and put them away like he did to me? No.

Will I try to work the puzzle with him like we used to do? No. Togetherness is more than he can handle.

Will I slot a few pieces in when he’s not around? Darn right, I will.

Pretty French scene reminds me of our trip to Nice 12 years ago. Peter doesn’t remember, but I do.

 

Header: Kim McFarland painting of perplexed Westie with a ladybug on his nose.

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

Sort and organize, part two.

Several days ago I posted a list of ideas that could help dementia patients feel as if they had some control in their lives. In the post, I used Peter’s adaptations as examples.

Today, I have a new item to add. This one aimed at those for whom reorganizing the silverware drawer or separating buttons by color aren’t challenging enough.

  • Wrangle grocery carts into types—large, small, ‘kiddy cars’—in the cart corral at the grocery store!

After our shopping trip the other day, Peter unloaded our groceries into the back of the car, then walked off to return the cart. I started the engine, adjusted the mirrors, lowered the radio’s volume, checked my hair, and waited and waited and waited. Where was he?  The cart corral was only three spaces away.

I reversed slowly out of my slot and, whoa, there he was, sorting carts and fitting them together as if they were the high school band waiting to parade.

I tapped the horn. He looked up and waved to let me know he knew I was waiting. Really, the only thing I could do was laugh.

This is Peter’s idea of Organization. Photo, Eroha trollies, 26/6/11

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

Header photo: Kroger’s on a Sunday morning

 

Right now is the right time.

My Peter, now more than ten years along dementia’s downward slope, is slipping faster. I try to ease the skid by finding activities to occupy him, to give him a sense of accomplishment. Many things he once did easily aren’t possible now. It has been a long time since he could cook anything, not even fried eggs or bubble and squeak. Sometimes he even forgets how to make a cup of tea.

I waited too long for the right time to introduce these “sort or organize” ideas I found online. But on his own, perhaps prompted by some brain tweak that Alzheimer’s patients experience, he’s been doing many of them for months, maybe years. I offer them here, for readers looking for in-home occupational therapy.


Sort or organize…

  • …nails, screws, and other hardware. Peter has long since sorted, by size and age, his collection of antique hammers and other old tools.
  • …nail polish and lipsticks, sorting by color, brand or on a scale of 1-10 by preference. Not bloody likely, he’d say to this one, but I might push him to tackle it.
  • …buttons, using muffin tins to sort by color, size or style. Not even the antique buttons my mother collected piqued his interest.
  • …coins, according to date, value or place of origin. Ah yes, he stacks coins, wraps others, and bands paper currency he brought home from our travels and his business trips to Europe and Japan.
  • …the pantry, arranging cans and jars by size, brand or contents. Unfortunately for me, he does this often. I want my pantry to be organized the way want it organized — tomato products together, vinegars and oils, all condiments, and so on. He likes everything lined up like soldiers, no matter their culinary purpose. (I’ve declared the pantry off limits, for all the good that does.)
  • …the silverware drawer, rearranging the order of the forks, spoons, and knives. Peter often reorganizes our two sets of everyday cutlery. He likes the two sets separate from each other, and I don’t give a hoot about that. I prefer all dinner forks in one compartment, all salad forks in another, likewise all soup spoons, all dessert spoons, and so on.
  • …playing cards into decks that match, or into suits within a deck, or by numbers. He’s been doing this for months, endlessly. He hates that my canasta decks are the same on the backs and tosses them aside because they don’t suit his orderly sensibilities.
  • M&Ms, using muffin tins to sort by color. Choose one color to eat. Haven’t tried this yet, but I have a feeling he’d eat all of them before they made it from bag to tin, all except the green ones, that is. “Green candy isn’t good,” he’d say.

Just a few years ago, Peter would’ve laughed at the thought of doing such silly activities. Now, they calm him, and give him a sense of purpose, in his increasingly purposeless world.

Header photo: Stacked coins in his closet.

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

Down the down staircase.

The downward path that any of the dementias take follows various routes, with stops and starts along the way. There are plateaus when it seems the diagnosis is a bad dream, when everything seems all right again. Normal.

Until the next minute or hour or day when the nightmare resumes.

Even though I often say — and truly believe — that my husband isn’t as bad off as most, that my caregiving tasks are easy compared to some, truth is, it’s a roller coaster ride that is not for sissies.

We’d been coasting along with mild ups and downs, a kiddie roller coaster, until one day three weeks ago. Peter and Nobby returned from a weekly nursing home outing with ever-faithful Bill. My husband came back so distressed and overwrought that it was as if had morphed into another person entirely. His mild-mannered self was gone, and in its place was a man I didn’t recognize. His face was different, his eyes were wild, his whole demeanor changed.

“That’s it. We’ll never go back there. Can’t go anymore,” he yelled as he paced. “They won’t let Nobby in any more.”

My worst fear came to mind. “Did Nobby knock someone down?” I asked. He’s a big dog, but as affable and lovable as a puppy. I envisioned him jumping on a frail old lady causing her to fall and break her hip.

“No, no, but they won’t want us anymore!” I continued questioning, but he couldn’t explain.

I contacted Bill to ask what had happened. He said Peter seemed “off,” very quiet, and he hadn’t wanted to go to their usual lunch. Nobby had been his usual friendly self,  no one was harmed, the visit had gone as well as it always does. Bill chuckled when I told him Peter thought he had gone to visit his mother. (Bill’s mother passed away twenty-some years ago.)

That day was a turning a point, a sharp turn in the steep, down staircase. I had hoped he’d magically snap back to the way he was, to the holding pattern he’d been in, but he hasn’t. This, then, is his new normal.

 

Nobby always watches Peter.

 

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

Play the cards you’re dealt.

My husband has taken to putting decks of cards in order, by suit, probably related to his need to control anything he can, however unimportant the activity seems to me. This latest obsession was especially noticeable when we visited Carolynn and Bill for a week.

Carolynn and I had put two decks of cards, a pad and pencil on the picnic table under a tree before lunch. The two of us were ready for an afternoon of canasta, part of our ritual weeklong championship.

screen-shot-2016-10-14-at-11-38-27-am
After we ate, Peter picked the cards up and began to lay them out, face up. He shook his head and frowned. “How do you know which deck to use?” he asked.

“We use both decks.”

“But they’re alike.”

“Doesn’t matter. Canasta is played with two decks, plus the four jokers.”

He continued sorting. When he finished, he knocked each deck sharply against the table and slid them neatly into their boxes. Even though Carolynn and I shuffled them over and over, the first hand we played after he’d organized them wasn’t well mixed. After she won that game too, we gave the cards back to Peter to organize all over again. He was happy.

screen-shot-2016-10-14-at-11-37-17-am

The joke is on me because later, when I Googled “organizing cards,” thinking I might learn another tidbit about dementia, I discovered instead that people around the world engage in contests to determine who can organize cards the fastest.  A young Canadian man set a record set a few years ago when he sorted a pack of cards in 00:22.60. There were no jokers in his deck though.

screen-shot-2016-10-14-at-11-37-17-am

 

The National Society of Newspaper Columnists contest winner, 2016 —
online, blog, & monthly under 100,000 unique visitors category.

Photos: Safari wallpaper

Left? Right. Left. Wrong!

We were having lunch at Lefty’s. As always, Peter looked at the menu, then at me and asked, “What do I usually have?”

imagesAs always, I said, “You can have something different.” It does absolutely no good to encourage him to try other things on Lefty’s or any other restaurant’s menu. I looked up at the large blackboard where daily specials are posted. “Oh, look, pork BBQ burger, yum! I’ll bet that’s good.”

Peter looked at the board. “No, I’ll have what I usually have…” His eyes asked the question again.

“A Lefty’s burger with fries then?” I’d already settled on a turkey reuben, my favorite, or I would have had the special myself. So much for branching out from “the usual.”

Later, while waiting for the check, Peter looked at the blackboard again. “Pork BBQ burger,” he said. “That sounds good. I should have ordered that.”

I sputtered. “I tried to get you to have it, but you wouldn’t.”

“Pfff, never saw the sign.”

I raised my left eyebrow at him. “It’s just like when we traveled in England,” I said. “You drove and I navigated. Every time we came to an intersection or a roundabout you’d ask which way. If I said ‘left,’ you’d turn ‘right.’ I’d insist, ‘left,’ and you’d say ‘wrong.'” Peter was confused. “In other words, no matter what direction I said, you thought I was wrong, so you’d turn the opposite way. I never did learn that I should have said ‘right’ when I mean ‘left.’ We’d have gotten where we were going a lot quicker, and with less fuss.”

A smile tempted his lips. He didn’t remember specifically the time lost on tiny English lanes, but down deep, he knew what I meant.

Continuing my argument, I said, “So my point is, an hour ago, if I’d looked at the list of specials and said, ‘Ew-w, yuck, pork BBQ burger’ sounds awful,’ you would have ordered it.

“No-o, I didn’t see it,” he insisted.

Ri-i-ight.
unknown-1

The National Society of Newspaper Columnists contest winner, 2016 —
online, blog, & monthly under 100,000 unique visitors category.

Prompt. Hint. Jog. Nag.

Bill, my husband’s kindly helper, arrived a bit early. We sat at the kitchen table chatting, while waiting for Peter and Nobby to get ready for their weekly therapy dog visit to a nursing home. Finally, Peter clomped through the kitchen.

“How ya’ doin’, Pete?” Bill asked.

Peter stopped, turned, and said, “You’ll have to ask her.” He nodded towards me. “She knows how I am.” He was laughing.

Bill laughed too. “Maybe you don’t want to know what she thinks,” he said.

Screen Shot 2016-06-15 at 11.56.06 AM

Peter carries Nobby’s leash.

“Oh, he knows what I think,” I said. “I tell him all the time.” I didn’t know what had prompted Peter’s remark, but perhaps it was because I’d had to remind him several times that he needed to put on a clean shirt and brush Nobby before Bill arrived.

There are lots of caregiver hints on-line. I’ve tried to lay out clothes for him to wear or attach a note to clean pants and shirt. I set the stove’s timer to remind him he needs to get ready. Nothing works. He will not wear what I’ve selected and he crumples my notes. When the timer goes, he calls to me saying something’s beeping in the kitchen.

Bill and I continued chatting, while Peter tried to put Nobby’s harness on. He doesn’t like me to help and yanks it away from me — his dog, he’ll do it!  Actually, Nobby is so smart I think he could buckle himself up better than Peter can these days. Not so long ago he tried to harness the tail end of the dog, and another time he fastened it in place without getting Nobby’s head through the apparatus.

All relatively little things, but frustrating to both of us —me for having to prompt, hint, jog, nag, and him for having to be…reminded.

Laugh, you just have to laugh.

It’s the little things.

It’s opening the silverware drawer this morning to get a knife and finding one that should be in the dishwasher. It’s crusty with toast crumbs and jam.

It’s finding the salt and pepper shakers in the fridge’s butter compartment.

It’s wondering what happened to the coffee mug I’d just been drinking from. Oh look, it’s in the cupboard with my coffee, still warm, inside.

It’s taking a pan out to cook broccoli and finding yesterday’s mashed potatoes remains.

It’s starting the Christmas baking and having my measuring cups and other utensils cleared away before I’ve used them, likewise the dishcloth I’ll need.

It’s him asking if the hiking boots he’s holding are mine. “Unh uh,” I say.

It’s yet another lost watch so that he’s started looking at the numbers on the cable box again as if it’s a digital clock.

It’s him standing outside the shower door yelling, “How do I stop that beeping?”

“What beeping?” I yell back.

“That…big thing.” I could see through the glass that he was drawing a box in the air.

“Smoke alarm?” He shook his head no. “I’ll be out in a minute.” The “big box” was the fridge, the beeping, the alarm that repeats annoyingly if the door has been open too long.

It’s him banging on the shower door again the next evening. “How do I turn off the squeaky thing in the basement?”

“Give me a minute,” I said. Invisible Fence control box, I figured. Peter spends most of his time downstairs, so the shrill squealing would pierce his ears. My hearing is so bad I can’t hear it unless I’m right beside it.

Unfortunately, I couldn’t reset it. Three days passed before someone could come. “When will it stop” he asked So. Many. Times.

It’s going out to eat, spur of the moment, and seeing his eyes light up when I steer him into our favorite hole-in-the-wall. “What do I have here?” he asks.

“Chicken kebabs,” I say, “but you decided you’d order my favorite next time.

“What do you have?”

“Suguk wrap.” I order for him.

It’s watching him eat something he’s never tried before. He loves it. “I could eat another,” he says, “but I won’t. Are we having dessert?”

“Two baklavas, please,” I say to the waitress. He remembers baklava as soon as he sees it.

“Balaclava,” he jokes, as I knew he would. “Yours is bigger than mine!”

I swap our plates.

It’s the little things that make him happy.