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

The tip of the iceberg didn’t sink the Titanic.

Who would ever think that something as inconsequential as a manicure would be the tip of an iceberg? Somedays I look at my hands — never my best feature — in despair. Nails chipped and split, cuticles like the pithy strips inside an orange.

Lately, I haven’t had time to indulge myself, because during the hours I have help for Peter I have to squeeze in shopping, errands, or all-important time to get together with friends. Yet, I make time to attend to his fingernails. He can’t, or won’t, do it anymore. His nails are strong enough to, well, pull nails, and they’re very difficult to trim. I have him soak his hands in warm soapy water to make it easier on both of us, but he complains and wiggles, although I think he secretly likes it.

And I drag him to get his hair cut and beard trimmed. I’ve tried to do both, but failed. I schedule our appointments back-to-back for my convenience. It’s one less trip, but it does take away from that bit of time for myself. Such a small thing, an iceberg’s tip, but underneath…!

images-1As dementia — Alzheimer’s — continues its march, I know more and bigger icebergs lurk. I already have a list of potential problems that lie ahead. The only thing this caregiver can do is lookout for laughs — lifesavers — and go full speed ahead.

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

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Header: A “berger bit” iceberg in Alaska, September 2006.

Could be a whole lot worse!

Most of January, I was mired in gloom worthy of Charles Dickens’ Bleak House, and for no good reason really. We are fortunate to have good long-term care insurance, I have companion help for Peter, and house-cleaning help for me. Best of all, Leslie is close by to bolster me, and Carolynn cheerleads from 596 miles away.

Could be a whole lot worse.

A well-timed phone call jerked me right back to my senses last week. Several times a year, our insurance company nurses call to ask routine questions: “Does Mr. Clarke need help bathing himself? Does he need help brushing his teeth? Has Mr. Clarke had any falls lately? Does he need help toileting? Is he incontinent? Does he have a problem falling asleep or staying asleep?” I always answer no. When they ask him directly how he’s doing, he charms them with a cheery “So far, so good.”

Before she rang off the nurse asked for more detail about his days. Peter is way more forgetful than the last time she checked, I told her, and more confused generally. And no, he can’t really converse except with me or other family members. We try to fill in the blanks and make sense of what we think he wants to say.

But, Peter copes better than most. He doesn’t need nursing care — yet — and he still “lets the dog walk him twice a day.” His sense of humor is intact, and although he often wears me out with his silly jokes and continuous corny patter, he takes care of me in the only way he can. He makes me laugh.

A recent morning for instance.

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If not now, when?

I’d been begging him to get rid of the moth-eaten, raggedy wool sweater he wears all the time. I dug into his drawerful of English cardigans —”cardis” he calls them — and found a marine blue double knit one. “Maybe you’d like to wear this for a change,” I said when I handed it to him. I thought sure he’d recognize it as one his mum had sent more than forty-five years ago, but he didn’t. He’s never worn it, but he’s always said he would when he was an old man. If not now, when? I thought.

Darned if he didn’t put it on right away. I wasn’t surprised how perfect it looked with the blue tattersall shirt he was wearing. I spread praise thickly.

He looked in the mirror, tucked his chin in, puffed his chest out, and said in a rumbling Churchillian voice, “Hrmp hrmp, erm, yes, jolly good, yes, I say, yes, mmm….”

When I burst out laughing, he wrapped me in a hug and I asked myself, what in the bloody heck do I have to feel depressed about?


2016 National Society of Newspaper Columnists’ contest, second place, blog category.
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‘…my brain was a jumbled mess and I couldn’t remember what number comes after potato!’

My husband is —was — a math whiz. Dementia overloaded his brain more than ten years ago, but every now and then, it reboots.

screen-shot-2017-02-06-at-11-47-05-amThis puzzle showed up on-line a few days ago.  If you can solve this, you are a genius, it read. I showed it to Peter. “I’ll bet you can do it,” I said, “and you know I can’t!” I added. He laughed. He knows how absolutely hopeless I am at math. I left him to it, pencil in hand.

Within minutes he was done. When he tried to explain how he’d arrived at the correct answer, he lost me, not only because numbers muddle my brain as if it’s being whirled in a blender, but also because he can barely put sentences together any more.

I’d copied the two possible ways to solve it, but I didn’t even understand how to apply either solution. Here’s what Peter did:

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You are a genius!

Interestingly, he keeps a scrap of paper by his chair that shows the way he figures out how old he is. I’m not smart enough to understand that either. First, he looks at the newspaper to see what year it is: next to 2017 he writes 17 and underneath, 62; to the left, 1938. Simple subtraction, 2017 minus 1938 should tell him he’ll be 79 this month. (Even I can manage that!) But then he adds 17 and 62 to get 79, too. See, I don’t get that at all, but he does and that’s all that matters.

There are probably several geniuses among my followers who can solve the “genius” problem. I am in awe of you. But I’m more in awe of my husband who did it so quickly, yet he can’t remember where the dog’s leash is kept, where the salt and pepper live, nor how old he is.

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

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Headline quote: Tara Sivec, USA Today best-selling author, Seduction and Snacks.
Header photo: Performance  Brain Training

Nobby did it.

Finding everyday things in strange places has become a daily occurrence at our house. I’ve found a milk carton in the bread drawer, Peter’s green coffee mug in the fridge’s butter keeper. Salt and pepper shakers and Coleman’s mustard are often in there too — that little compartment can hold a lot. One morning there was a plastic baggie filled with potatoes beside his chair in the family room, and the electric kettle was sitting next to the burner of our gas stove. The latter, a disaster waiting to happen.

Lately Peter insists it’s my fault that he’s never known he should put liquid soap into the sink to wash things that don’t go in the dishwasher. Likewise, it’s my fault I never told him where to put the teaspoons after I finally found all of them wrapped neatly inside a place mat. And after I’d searched all over the kitchen for the box of tea I knew I’d bought a few days before, Peter was as surprised as I was when he pulled the box out of the little table beside his chair.

“Ah ha!” I said.

“How did this get in here?” he asked.

I rolled my eyes and raised my left eyebrow, but I was smiling. “Nobby did it,” I said.

This morning around 11:30, I reminded Peter he still hadn’t taken the dog for his early walk. “I know, we’re going now,” he said. He fumbled with Nobby’s harness — he can hardly manage it anymore, but gets angry if I try to help — and started out the door wearing only a light sweater over his shirt.

“You’ll need your jacket and a hat,” I said

“But it looks like summer outside,” he said. “Looks like the sun is going to come up.”

“Peter, it’s nearly noon, the leaves are all gone, and it’s gray and cloudy and cold.”

“Oh-h, well…yes-s…,” he said as he went to get his jacket.

I sat down to write this post. Minutes later, my husband, zipped into his jacket, came up behind me. He held the dog’s leash and collar in his hand, but Nobby wasn’t attached. “Do you think Nobby wants to go for a walk? Is it too cold for him?”

“No, he’s got his fur coat on,” I said. “Go, go.” 

“OK, we’ll  back soon,” he said.

“Thanks for the warning,” I said, using one of his well-worn sayings. He laughed.

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

 

On canyon’s edge!

Three years ago I published my first post, “We’ve arrived, and to prove it we’re here,” on my new blog, “Wherever you go, there you are.”  A year later, August 6, 2014, I published my first post for this, my second blog.

I often think about how the subject matter of this blog has affected what I intended to write about in “Wherever you go, there you are.” As my husband’s dementia has worsened, traveling anywhere, even to the mall, can be a problem. His wardrobe needs to be replenished but he won’t go willingly to look for new shirts,pants, or shoes. If I try to buy things and take them to him, he won’t wear them. He didn’t even like the socks I bought.

I knew our last big trip in 2011 was our final trip — Peter got lost, at night, at Bryce Canyon, Utah. He wanted to hear a talk in the main lodge, within sight of our room. It was daylight when he left, and would be daylight when he returned. He went by himself.

Dusk fell. He wasn’t back. I raced to the main lodge, panicked because I’d let him, urged him, to go alone. 

When I got to the desk, terrified and gasping, I could hardly speak. The staff jumped to action. Grounds crew sped out in golf carts, while I stayed behind and paced. It wasn’t long before the desk clerk beckoned. Peter had called! My husband, who never uses a phone, had the presence of mind to go into a dorm, knock on someone’s door and ask to use their phone.

“Stay right there, we’re coming,” I said. I hopped in with a groundskeeper and we rocketed through the dark.

Peter was inside a lighted entryway. He grabbed me and apologized over and over for getting lost. He was shaking. He’d never go off on his own again, he promised. “But it was my fault,” I said. “I should’ve gone with you.”

Neither of us slept well thinking what could have happened. I knew that trip was our last. No way could I cope with the escalating need to keep closer tabs on Peter, and keep track of travel details too. When we got home I tucked our luggage away and made a photo book of our travels to remind us where we’d been.

Now, the smallest outing is an event. We don’t go far, but we have mini-adventures. “Others deal with far worse,” my mother would’ve said, and I know it’s true. Besides, in the end, there’s no place like home.

Header: Queen’s Garden, Bryce Canyon, Utah (2011)

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

 

The little things are getting bigger.

It’s him asking over and over “why they’re digging up our driveway?” It’s not understanding that the plumber’s crew aren’t “looking for” anything. They’re replacing our sewer line, collapsed and choked by roots, after 60 years.

It’s knowing that telling him something will make no impression, as if I never said anything at all. It’s knowing that he won’t even see my note, underlined in red, that I’ve left to remind  him of an event, a date, a task.

It’s putting a shovel in the ground exactly where I want a hole dug for the azalea that was yanked out last week, knowing the shovel will be put away before the task is even started. It’s knowing he’ll ask why the azalea, jammed in a big flower pot, was sitting next to the shovel.

It’s me YELLING because once again he managed to confuse our so-called “smart” tv by pushing the wrong buttons on the remote. I’m not smart enough to know what’s wrong, so I can’t fix it.

IMG_3266I thought I’d come up with a brilliant way to avoid telling him things he’d forget, or writing notes he wouldn’t understand: I suggested he write a note to himself about how to turn the tv on and off, for example. He liked that and labored over the words. His own message worked for 24 hours. We’re lost without the tv, Peter because he watches anything, anytime, and me because he’s content and calm when it’s on.

It’s me begging him not to move the plumber’s drainpipe extension because it helps direct rainwater away from our not-yet-resurfaced driveway. I growl when I see that he’s moved it to where he wants it again. I had him insert metal garden stakes along the pipe to hold it where it’s supposed to rest, thus reminding him that it shouldn’t be moved. Worked so far.

It’s me, arguing when he said he did not fill in the hole he’d just dug or “plant” the weeds I’d just pulled. I know better than to argue.

Yes, I look for laughs every day, but days like this, there aren’t any.

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This is where the azalea once lived.

What can I do?

My brain had short circuited. I clutched my head and tried to figure out which problem to tackle next.  Just then, Peter peeked around the door. “Can I do anything to help?” he asked.

My pitiful smile didn’t reach my eyes. “Could you give me some peace of mind?” I asked. “That would help.”

He chuckled. “You want a piece of my mind?” he said.

The tears that had threatened dried up. Just that brief exchange lightened my mood.

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Photos: Sailing to Alaska (2006)

 

Keep on the sunny side of life.

For years and years, long before dementia took control of our lives, if I asked Peter to take the garbage images-3out Thursday evening he nearly always refused. His argument was, no one else had theirs out. Only one other house on our block has front curb pick-up, so it isn’t a contest. Finally, I started doing it . It certainly isn’t difficult, and my nagging was nagging at me.

images-2Before daylight one Friday I noticed the blue bin was in the carport. I was positive I’d taken it out. Did the truck go by already? Did our neighbor bring it back? I went out and peeked inside  — full. Blast!

Peter must’ve rolled it back the evening before thinking it was empty. He didn’t notice that “empty” was very heavy — the week before we’d had a lot of snow so there’d been no garbage collection at all.

Whether garbage is in or out isn’t a big problem, but it’s a worrisome symptom.

A few days later I was in the pantry when I heard Peter and Nobby come back from their walk. “Knock, knock?” he said, peeking around the door. “Oh! I didn’t think you were here.”

I’d been pouring kibble into Nobby’s metal bowl. “Didn’t you hear the racket?” I asked.

Peter shook his head and pointed toward the carport. “Your car isn’t there.”

This was a Sunday. My car had been gone since Thursday evening. Leslie traded cars IMG_0461with me so she and Martin could take mine to a family ski weekend in West Virginia. “You haven’t noticed my car was gone? We ran errands today in Leslie’s car, remember?”

Of course he didn’t remember. But he’d laughed at me trying to adjust her seat and mirrors while complaining I felt like I was sitting on the road in her much lower car. Even after all this time I can’t seem to remember that he really can’t remember.

Peter no longer fixes meals. He used to make Indian dinners, bubble and squeak, and he always cooked fish. He still makes the best fried eggs. He does them, with supervision. I get out the skillet, eggs, oil, spatula, and put the frozen chips in the oven. I tell him when to start the eggs.

I watched him a few nights ago so “I could see how he did it,” I said. When they were just right, he slid the skillet off the burner, then reached through the grate. “NO-O,” I yelled when I realized what he was doing. He singed his fingers before my yell penetrated. He said he  thought he had to twist the “thing” (burner cap) to put out the flame. He wasn’t burned badly, thankfully.

Days like these, “Keep your sunny side up” are words to live by.

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