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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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

Nobby didn’t do it!

Peter went with me to get my springtime supply of potting soil. I had to ask a Lowe’s employee to help us get it off the stack and onto a flat cart. Together, we managed to heft it into the car ourselves, but at home Peter insisted he wrestle the monster bag to the backyard himself.

Then, Friday, with only a few more plants to pot, I set myself up under the maple tree with trowel, pots, scoop and…where the heck was the potting soil? I looked in the gardening cupboard, the shed, the basement. Arrgh-h, was it that bag that made the garbage bin so heavy that morning? It had been very difficult to roll to the street and Peter was concerned the weight would be too much for the lifting mechanism on the truck.

“Do you know where the potting soil is?” I asked Peter, knowing he wouldn’t know what I was talking about.

“Potting soil? What’s that?”

“Big green bag, heavy, you lugged it around back for me couple weeks ago. Come help me, I’m probably looking right at it and can’t see it.”

We went to the shed and looked under and behind things. Nope. Storage cupboard? Nope. Basement? Nope. “If it was as heavy as you say I don’t think I could’ve carried it down here,” he said.

I groaned, sure it had been put into the blue bin that had already been collected. Peter often sneaks things into the garbage. We really couldn’t blame that, even jokingly, on Nobby.

I plonked down on the terrace steps, frustrated. In order to finish, I’d have to go get another bag of the stuff. But oh, wait, something bright green beside the steps caught my eye. OH!

“Peter, I found it,” I yelled. I pointed to the bag leaning against the wall. I’d practically stepped on it when I began my search.

He laughed. He hooted. His face turned red.

“I’m sorry! It’s my fault, not yours!” I said, laughing almost as much as he was.

Leslie arrived just then. What’s going on, she wanted to know.  Peter, still laughing, pointed to the very big, very green bag. “Mum tried to blame me…said I threw that away…I can’t even lift it….”

She laughed too, as only she can. Later, she suggested the episode was a post waiting to be written. I, like Peter, always do what Leslie says.

At least Nobby didn’t get the blame.

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

 

Header: Peter weeds the herb garden.

‘A good time to laugh is any time there is.’

“Any news from upstate?” Peter asks. It’s dinnertime and that’s the question he repeats over and over during our meals.

“No,” I say.

We listen to the evening news while we eat, me grumbling at the goings-on in Washington, Peter listening carefully to the weather report.

“Any news from upstate?” he asks again.

I start to shake my head, but instead, decide to try a different response. “No,” I tell him, “but Leslie and Martin spent the weekend at the river.”

“Really? In this…?” he asks. He nods his head towards the fog outside, the rain-streaked window. “What did they do?”

I laugh. “We were there, too,” I say. I’d hoped he might remember the two days, the cozy fires, the good food, log-wrangling with Martin, Leslie and me laughing hysterically over nothing at all.

He shakes his head disgustedly, but recovers with his usual line, “Oh, well, that was a long time ago. I can’t even remember what I had for breakfast.”

I nod, laugh, frown.

Laughter in the face of reality is one of the finest sounds there is. In fact, a good time to laugh is any time there is.”  Linda Ellerbee


2016 National Society of Newspaper Columnists’ contest, second place, blog category.

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Puzzling.

A lot of puzzling memory and behavior problems cluster under the dementia umbrella. So far, science knows too little about most of the variations and nothing that can cure any of them.

img_4436On a day-to-day living-with-it level, my husband’s memory issues are baffling to both of us. He’s always liked to do crosswords, and still brags about the time 50 years ago when he won the London Times Sunday crossword challenge. He does the daily crosswords still, but I’m not sure how well. He enjoys jigsaws too, and recently resurrected a 3D castle puzzle.

So I got out several Christmas puzzles we’ve worked many times over the years. Among them, a tiny one depicting a mouse dressed as Santa. I sorted the edge pieces from the rest. and laid out the one small section that was still stuck together. The whole thing is quite small. He got into it quickly. Ten minutes later I went back to see how he was doing. There were a lot more white background pieces than before.

img_4440“Where did these come from?” I asked. He shrugged his shoulders and muttered something about “needing more.” I picked up a piece that had green pine needles as part of the design. “Oh, these don’t go with this puzzle,” I said, “they go with this one.” I showed him the larger puzzle I’d set aside. It pictures wild birds on a feeder that hangs from a pine bough. It was partially put together in the box.

img_4437Peter doubled over laughing at himself. “Well, when I couldn’t find the pieces I needed, I thought they might be in that box,” he explained. He realized how silly that sounded.

“We’ll do that one separately,” I said. “Finish this little one first.”

“There aren’t enough pieces,” he said, grabbing for the bigger box again. He’d instantly forgotten we’d had that conversation, that he’d laughed at himself.

As often happens, I tried to make sense of how he can work on an intricate 3-D 620-piece jigsaw one minute and the next try to fit a 500-piece 12″ x 36″ puzzle into a 100-piece 7.5″ square frame.

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2016 National Society of Newspaper Columnists’ contest, second place, blog category.

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Apples and pears…stairs.

Peter looked at the lunch I was fixing for myself, my usual apple, chunk of Cheddar cheese, glass of milk. “Where did you get the apple?” he asked.

I pointed to the old wooden bowl that has always occupied our kitchen, that is always filled with fruit, and the occasional veg.

“Oh, I didn’t know that was there.” He picked out a piece of fruit, came back to the sink and turned on the water.

“That’s a pear,” I said as he washed it off.

Instantly, he collapsed laughing, his face as red as the apple’s cheeks, eyes twinkling. He hugged me. “I know it’s a pear, silly. I’m not that far gone.” I laughed with him and savored the hug.

That far gone, no, but he is more and more confused by the day, less and less able to find words or remember the simplest things. Still, I was grateful for the moment, the laugh, and the hug!

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Fruit with acorn squash.

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

Fish story.

A rank smell had permeated our basement for weeks. I couldn’t find the source so chalked it up to our muggy summer and a husband who refuses to let the dehumidifier run.

When we got back from ten days away, the odor, now thick as mud, impregnated my nose. I asked Peter to help track it down, but his sense of smell only extends to candles and perfume, both of which he dislikes intensely. I was on my own.

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“Welcome to Dementialand: Living, Loving and Laughing through Alzheimers and Related Dementias” is an informative blog by Elaine Eshbaugh, PhD. A gerontologist at University of Northern Iowa, her expertise centers on many things we caregivers need to know. She has written a series on how dementia changes the way individuals experience the world, one post about each of the five senses. “Smell” couldn’t have been more timely for me.

“Many people…notice that as they get older, they no longer detect smells like they [did] in the past. However, the change…for individuals with dementia is more severe and can even be dangerous.” Burning food and smoke, for example. “Smell has an important function for us,” she says. “…People with dementia may lose the ability to interpret certain smells as signs of danger.… Smoke alerts us to fire…that connection is eventually lost for people with dementia.”

Eshbaugh’s words reminded me that my husband’s grandfather, over ninety then, had nearly set his house on fire because he forgot he’d put the kettle on for tea. Not long after, Peter’s dad had to move the old fellow to a nursing  home, because of his own Parkinson’s. He could no longer look after his father. Peter burned up our electric kettle several months ago when he put it on the gas stove to boil. He didn’t smell it smoldering, and I, upstairs reading, didn’t either. The next morning when Peter picked up the kettle, chunks of plastic fell off the bottom. I realized what happened, but he didn’t. He had no memory of it and wondered why the kettle wouldn’t work.

“Smell also alerts us to spoiled food. … It doesn’t work that way for people as dementia progresses,”  Eshbaugh writes. “Keep in mind that our actions are based on how we experience the world. Dementia alters [that] by changing sensory perceptions. … And those experiences are based on what they do and do not taste, see, hear, touch, and smell.”

And that brings me back to our stinking basement.

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screen-shot-2016-10-05-at-12-19-25-pmThe mystery wasn’t solved by Friday evening and I was tired. I decided to fall back on a frozen pizza from the basement refrigerator. When I  opened the freezer a stench rolled out like a London fog, yet everything inside was solid. I opened the fridge door and gagged. Hm, something suspicious in the crisper drawer.

Ah-h, two formerly frozen packages of trout my friend John had brought us months ago. I’d planned to fix them one night, then changed my mind. I asked Peter to put them back in the freezer, but obviously, he’d put them in the fridge instead. I never thought to check, then or while I sleuthed.

Since he can’t smell anything, he got the task of triple-bagging the reeking fish, dousing them with baking soda, and trashing them.

Nancy Drew would have laughed at my noticeably lacking skills.


The National Society of Newspaper Columnists contest winner, 2016 —

online, blog, & monthly under 100,000 unique visitors category.

Caregivers’ resource: “Welcome to Dementialand: Living, Loving, and Laughing through Alzheimer’s and other Dementias,” Elaine Eshbaugh, Phd.

 

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.

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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.

‘Try to remember and if you remember then follow.’

Peter held up handful of baby carrots. “These are cold,” he said.

“You just took them out of the fridge.”

“Yes…but…feel them.”

Uh oh, the fridge was playing tricks again. Sometimes the crisper drawer turns its contents into veggie popsicles. “Here, I’ll put them in the sun on the windowsill,” I said.

Peter carried on making his lunch which never varies: beef or pastrami sandwich with splotches of Coleman’s mustard and margarine, plus a few carrots, a pile of crisps, and any fruit I sneak onto his plate. He reached into the bag of carrots. “These are cold,” he said.

“Yes, look, some are thawing.” I pointed to the cup sitting in the sun.

“What would I do without you to keep me straight?” he said, shaking his head and laughing.

“I guess you’d be eating a lot of frozen carrots,” I said.

As a learn-by-doing caregiver, I try to make my husband continue to do whatever he can. If I were to let him slide, his downward progression would be much faster I believe. Friends are amazed that he still walks the dog — “Nobby walks me twice a day,” he says — and that he  mows the grass, also twice a day sometimes. And he continue to pick up sticks and comb the rugs’ fringe with whatever implement he can find.

Yesterday I caught him using an antique silver meat fork for the job. Not only was it too hefty for the aging fringe, I didn’t like the idea of using a pretty old fork on a rug. I yelped. He stormed off. I immediately felt guilty. He was back within minutes to ask if I needed any help.

“Why don’t you walk Nobby?”

“He walks me twice a day.”

“I know. He’s ready to take you right now.” The dog flopped his tail hopefully.

“Oh, wait, you could get fish while you’re out,” I said. I’d written down what I wanted from the fish ladies.

“Where are they now?” he asked.

“Across from the rugby field…”

“Right, I remember. What do you want again?

“It’s on that paper. Take it with you.”

“Don’t worry, I will. Where are…?”

“Across from the rugby field.”

“Right.” Nobby led Peter out of the house. The door slammed.

I sat down in front of the computer. I had a few minutes to write! The door slammed again. I heard Peter behind me. “Across from the rugby field,” I said without waiting to hear the question. He chuckled. The door slammed.

Keeping my cool is nearly impossible sometimes, but when I think how frustrating it must be for him to try to remember simple instructions, I simmer down.

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Carrots thaw, Peter mows, and in his right hand, he holds a bunch of sticks.

 

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

‘So far, so good.’

The insurance company nurse comes twice a year to assess my husband. One of her questions is, Can he bathe himself, brush his teeth, toilet himself? She asks Peter, but looks to me for answers.

I know he scoffs silently at the mere mention of the topic.  My answer is always an enthusiastic yes. On that point I am — we are — way luckier than many who live with any form of dementia.

Peter has been taking multiple showers a day for the past year or so. This wasn’t always the case. I used to have to remind him he needed a shower, but now, if he sweats even a tiny bit, he reacts as if he’s been dipped in pond scum. “I’m all sweaty,” he’ll say as he races through the house and up the stairs.

He almost never puts on clean clothes afterwards. I don’t understand, but I don’t question, glad that I don’t have to help him bathe nor wash piles of clothes…yet. For some reason, wearing a shirt that is damp and stinky doesn’t bother him. It’s the sweat itself that is his bugaboo.

The rest of the personal hygiene issues aren’t issues yet. From the articles I’ve read, I know what’s coming.

Peter always says, if asked how he is, “So far, so good.”

“It could be worse,” is what I say if anyone asks me.

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National Society of Newspaper Columnists’ contest winner, 2016.