Trouble with a capital T rhymes with me!

Posted on October 26, 2016 by judithclarkewrites under Alzheimer's, Caregiver, Chocolate, Helpful hints, Lost

My friend Bette made it a point to tell me she’d seen Peter at the grocery store recently. She figured I must be in the store somewhere, although she didn’t see me. Bette introduced herself to him because she knew he wouldn’t remember her name. His response was quick and so typical of him. “Don’t tell ‘anyone’ I’m here. I’ll be in trouble.”

Anyone meant me, of course.

She didn’t remember what day it was, but I figured it was probably the Tuesday he snuck out without telling me he was leaving, nor where he was going. When I realized he wasn’t here and that he had probably been gone well over an hour, I went looking. By the time I got home, he was back. “Where’ve you been?” he asked, greeting me at the door as if he’d been out looking for me.

“You didn’t tell you were going out,” I said. “I’ve been looking for you.”

“I didn’t know where I was going,” he said. “I just went for a walk.”

“Where?”

He shook his head. “Can’t remember.…that was a long time ago.” He uses the “long time ago” line a lot in attempt to joke his way out of Trouble. His only Trouble would’ve been if he had gotten lost for real!

That evening I found a Hershey bar wrapper and deduced that he’d gone to Kroger’s.

Several days later someone else told me she’d seen Peter at Kroger’s and he seemed confused. She saw him leave and decided to call me — it was that same Tuesday. I didn’t see her voice mail until after he’d “found himself,” but it is comforting to know we have friends to help me keep track.

I am researching personal tracking devices. There are several types on the market, but he wouldn’t use any of them willingly, and I know he would find ways to “lose” them. He’s crafty that way. I wish someone would come up with a microchip like veterinarians implant in dogs. The idea would make Peter laugh…I think that will be my little secret.

Breadcrumbs?

Header photo: The road not taken.

2016 National Society of Newspaper Columnists’ contest finalist.

Fish story.

Posted on October 5, 2016 by judithclarkewrites under Advice, Caregiver, Defined, Helpful hints, Problems

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.

“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.

The 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.

Header photo: Peter catches a not-keeper.

2016 National Society of Newspaper Columnists’ contest finalist.

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

Do I know where I am?

Posted on September 28, 2016 by judithclarkewrites under Alzheimer's, Caregiver, Dementia, Family, Laughter, Remember

Peter was unusually silent. “Something wrong?” I asked. I was driving along a narrow road so could only glance at him.

The silence lengthened. “Do I know where I am?” he said at last.

Whoa, what? “Do you mean this instant, here, on this road?”

“Yes.”

“Well, we just left Carolynn and Bill…we’re heading home…we’ll soon be in Waterville…” I paused to see if my words rang his bell. “Remember last week, on the way here, we had to stop for a parade in Waterville?”

Nothing.

I thought back to that Saturday. The long drive north had been uneventful until we got to Waterville (pop. 1,548), where we were blocked by a parade longer than the main thoroughfare. Stuck, twenty minutes away from Carolynn’s front door. I fumed, but Peter said, “It’s a pretty day. We’ve got time.”

“But I want to be there, not sitting here.”

Forty minutes later we were zooming along the downhill drive to — whoops — Road Closed and Detour signs. “OK, I know how to get there from here, I used to bike along this road.” Several miles later I turned left onto another favorite bicycling road. “Do you remember? We used to ride along here a lot.”

Peter sighed. “You seem to know your way around.”

“We lived here seventeen years!”

“You did. I didn’t.”

A right at the next stop sign, then a quick left and we were on their street. “You sure know your way around,” Peter said again.

“We lived here seventeen years!”

“I didn’t,” he insisted.

When I turned into their drive, he sat up straight and smiled. “I didn’t know we were coming here!” His eyes sparkled and when Carolynn and their two Westies ran toward us he chuckled. He knew where he was.

I laughed. “I’ve told you for weeks we were coming to see them…”

“I. Didn’t. Know.”

…

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Bill and Peter in front of a rock-hugging tree.

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Big Guy and/or It.

Throughout our visit, his usual confusion at being away from home eased a bit. After a couple of nights he was able to get from our bedroom to the bathroom and back without going into their room or Carolynn’s office. He didn’t even try to remember Duffy’s or Lily’s names, calling them instead “Big Guy” and/or “It.” He didn’t understand how to use the Wii remote to play golf or bowl with Bill, but he had fun trying. He could still keep track of the dominos played and plan moves accordingly. Bill took him fishing, golfing, and shopping; Carolynn and I took him to the farm stand; I took him to the Polish butcher and past our old house. He remembered the butcher, but had no memory of living in that house. It does look quite different — terrible — minus the two enormous maple trees in front.

…

Bill, Lily and Duffy follow Peter around Moss Lake as if he knows the way.

But now, headed south again, Peter had asked if he knew where he was. I reminded him of all the things we’d done, his outings with Bill, our hike in the Adirondacks with the dogs. He shook his head. “Sorry, I just don’t remember.”

But I do. I remember a visit special for the girl-time with Carolynn and her friend Robin, a visit with friend Lisa, time off from caregiving thanks to Bill taking charge, and the laughs. Always the laughs.

I won’t forget.

: Good morning kisses, Carolynn and Duffy.

: Bill and Peter relax in polka-dotted sunshine.

Header photo: Walk in the Adirondack Park.

2016 National Society of Newspaper Columnists’ contest finalist.

Prompt. Hint. Jog. Nag.

Posted on September 10, 2016 by judithclarkewrites under Alzheimer's, Caregiver, Control, Dementia

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.

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.

Header photo: Nobby waits patiently for his walk.

2016 National Society of Newspaper Columnists’ contest finalist.

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

Posted on September 2, 2016 by judithclarkewrites under Alzheimer's, Caregiver

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.

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

Header photo: Carrots in the sunshine.

2016 National Society of Newspaper Columnists’ contest finalist.

You don’t forget how to ride a bicycle.

Posted on August 22, 2016 by judithclarkewrites under Caregiver, Dementia

Snow was on the ground when friends Shelia and Jerry first mentioned organizing a day’s cycling adventure once the weather was nicer. We tried to coordinate a date for May or June, but bad weather and household emergencies got in the way. On a brutally hot day this month they brought up the idea again. “Let’s try the Virginia Creeper Trail in September or October, Pete,” Jerry said. “It’ll be cooler then.”

“And the fall colors will be beautiful,” Shelia added.

“Where is that?” my husband asked.

“Southwest, near Abingdon,” Jerry said. “It’s an easy trail. They take you to the top and you coast down, almost never have to pedal.”

Peter wore his worried face. “I don’t think I can ride a bike anymore.”

Jerry winked at me and Shelia said, “Just think about it, Pete. We’ll set a date later.”

My husband knocked off thousands of cycling miles a year, even while he was still working, more after he retired. He has a custom bike that is the envy of anyone who knows bicycles, but he hasn’t ridden, not even his “junker,” in at least five years. “I’ll get lost,” he always says.

He’s forgotten so much, but he remembers the concussion he got in a bike race years ago. He slid out on wet pavement — no helmet — and hit his head. He blames that on his memory loss, and maybe that’s why he won’t commit to a ride, even on a local trail.

After our friends left, I said I thought he’d be able to ride the Creeper trail. “Why don’t we take our bikes out and ride around the block to see how you — how we — do,” I said.

“I might fall off.”

“Riding a bike is like riding a horse,” I said, twisting the old catchphrase. “You don’t forget, and if you fall off, you get right back on again.”

“You remember the last time I rode a horse, don’t you? The horse died the next day!” His face turned red and his eyes watered, he was laughing so hard. Dementia hasn’t erased that memory.

That poor horse died more than forty years ago. We hadn’t even met when it happened, but we’ve laughed about it for years.

Header: Huckleberry Trail, 2014.

2016 National Society of Newspaper Columnists’ contest finalist.

On canyon’s edge!

Posted on August 3, 2016 by judithclarkewrites under Caregiver, Dementia, Lost, Problems, Remember

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)

2016 National Society of Newspaper Columnists’ contest finalist.

Hung out to dry.

Posted on July 26, 2016 by judithclarkewrites under Alzheimer's, Caregiver, Chores

“Do you really hang clothes out to dry?” friends ask when they see my clothesline in the backyard.

“Nothing like sleeping on sheets that have dried in the sun,” I say. A clothesline was a must-have when we were looking at houses.

I did the laundry early so I could hang it out before the temperature reached the weatherman’s predicted, blistering 92°. But I forgot about the wet things, and didn’t take anything out until 11:30. Then I rushed to “peg it out,” as Peter’s old granny would’ve said, so I could retreat to the cool of the house.

Half an hour later, upstairs tidying our bedroom and bathroom, I glanced out the window and saw my husband taking everything off the clothesline. Oh no, I thought, the laundry can’t be dry yet. I opened the window and yelled, “Leave all that there, please.”

“But it’s dry,” he yelled back. He continued folding the sheets.

I ran downstairs to try to short circuit the process, but he was already inside. The sheets, dish towels, and tablecloth were all folded neatly. He had left tee-shirts and a few other things on the line. “I wanted this stuff to hang out in the sun,” I explained. “It makes everything smell so good and bleaches the whites too.”

He plonked the basket down and stomped off. The sheets were still quite damp, so back out I went to hang them out again.

I walk a fine line trying not to hurt my husband’s feelings when he tries to help, but in this case, I really needed the sun-dried sheets to promote my sense of well-being.

I decided all husbands, not just mine, have trouble with Laundry 101. And most wives don’t understand why they must heed the oil warning light in their cars. In the end, it all comes out in the wash.

2016 National Society of Newspaper Columnists’ contest finalist.

‘So far, so good.’

Posted on July 23, 2016 by judithclarkewrites under Alzheimer's, Caregiver, Dementia, Obsessive

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.

2016 National Society of Newspaper Columnists’ contest finalist.

A last hurrah?

Posted on June 30, 2016 by judithclarkewrites under Caregiver, Dementia, Good news

“Where have you been?” Peter asked. It was the wee hours of Monday morning and he was just getting into bed.

“Los Angeles…I just got back,” I said. “The plane was late.”

“Why were you there?”

“Columnists’ conference, remember? I marked it on the big calendar downstairs.”

“Hm-m,” he muttered and, lights out, he was asleep. So much for a welcome home hurrah.

Leslie had been in charge my four days away. She (and Carolynn, too) can handle Peter, often more easily than I can. She’d been asleep on the couch and went home as soon as I came in.

When Peter came downstairs next morning, I said, “Gooood morning,” as I do every day.

He affected his fake startled look, as he always does, and said, “Oh, hello…I thought you were away.”

“I came back…two o’clock this morning,”

“Where were you?”

“L.A.” I said, pointing to the calendar on the kitchen counter.

“Mm-m, that was a long time ago. I don’t remember.” The previous Thursday was ancient history in Peter’s mind

I didn’t expect him to remember, but still it rankled. “It was one of the most exciting things I’ve ever done,” I said. I wanted to tell him about it, but showed him photos on my phone instead.

“I’m sorry, there’s just nothing in my head anymore.” He sighed and knocked on his forehead with his fist.

“But it doesn’t sound hollow,” I said and we laughed.

I didn’t even try to tell him that I’d won the number two spot in my category. Or that the award came with two hundred dollars or that I sat next to my idol Leonard Pitts at dinner.

When I showed him this photo of Los Angeles’ infamous rush hour traffic, he asked, “Who would want to face that every day?”

“Not me,” I said. “Coming downstairs is as far as I want to travel to go to work.”

Header photo: Mid-night rose.

2016 National Society of Newspaper Columnists’ contest finalist.

Dementia isn't funny.

Caregiver Judith Clarke looks for laughs every day.

Category Archives: Caregiver

Trouble with a capital T rhymes with me!

Fish story.

Do I know where I am?

Prompt. Hint. Jog. Nag.

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

You don’t forget how to ride a bicycle.

On canyon’s edge!

Hung out to dry.

‘So far, so good.’

A last hurrah?