Fish story.

Posted on by 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.

screen-shot-2016-10-05-at-4-03-12-pm

“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.

screen-shot-2016-10-05-at-4-03-12-pm

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.

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 by 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.”

…

14434919_10209208268636888_3725915689511961625_o

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

14425407_10209208252836493_4343794603384394606_o

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.

…

screen-shot-2016-09-27-at-4-52-26-pm

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.

Header photo: Walk in the Adirondack Park.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Left? Right. Left. Wrong!

Posted on by under Advice, Alzheimer's, Control

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

2016 National Society of Newspaper Columnists’ contest finalist. 

Prompt. Hint. Jog. Nag.

Posted on by 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.

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.

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 by 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.

IMG_3685

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. 

These bubbles don’t make trouble!

Posted on by under Childlike, Family


“Why are they all different colors?” Peter asks. Bubble-blowing is a new experience for him.

“‘Cause they’re soapy, I guess,” I say. Heck, I don’t know why bubbles look like floating rainbows in the round.

“But the stuff in the bottle is purple!”

Oh, I get it. He thinks the bubbles should be purple. “Food coloring maybe?”

“Why?”

“To make it look like grape pop.” The tiny bottles were made to look like look like pop — soda — bottles.

“Pop?”

“You know, a soft drink…Coke…Coca Cola….”

“Not me! I drink beer!” He smiled to see if I got his little joke.

“GLYCERINE!” I say, inspired. “The bubble juice has glycerine in it, I’ll bet that’s why they’re so colorful.”

“How do you know that?” he asks.

“I don’t. I’m guessing. My mom used to make a bubble concoction with a cake of Ivory soap…and something else….” Back then, little kids had bubble pipes,, not plastic wands like now. I played with mine for hours because I thought I looked like my daddy. He smoked a pipe. The only bad thing with bubble pipes was, if you forgot and inhaled, you got a mouthful of soapy water.

I’ve since discovered that glycerine doesn’t cause the bubbles’ iridescence, the soap does. Glycerine makes the bubbles supple and extends their life. Either Karo or Golden Syrup can be used in place of glycerine. Who knew?

Peter carries on blowing bubbles, fascinated with a childhood pastime he never experienced. In war torn England, little kids didn’t have such luxuries, I suppose. Mums didn’t have extra Fairy Liquid and Golden Syrup with which to stir up entertainment for their children.

Header photo: Peter is a bubble-blowing expert.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

You don’t forget how to ride a bicycle.

Posted on by 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.

elephant_can_t_remember_how_to_ride_a_bike_postcard-r3ee9a2446d324d96b954577223d41f58_vgbaq_8byvr_512

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. 

Why was I surprised?

Posted on by under Childlike, Dementia, eye of beholder

“Let’s go see the ‘Art in the Garden’ exhibits…” I said to Peter, “…at the Hort Gardens.”  It was a surprise outing for him.

“Oh, OK!” His eyes sparkled. “We haven’t been there in a long time.”

“Be ready in twenty minutes,” I said, glad he was interested. Wherever we went on our travels, when we still traveled, we would always visit public gardens.

He didn’t mention, or didn’t realize, that I headed the wrong way out of our drive. Carol Lee doughnuts was an important first stop, part of my surprise. I bought six of their lighter-than-air glazed to have with the thermos of coffee I’d brought. From there I took a “scenic route” I knew he’d enjoy — through campus, past the power plant which intrigues him, around the drill field and duck pond, and finally to the Hahn Horticulture Garden.

Leslie and I had already seen this year’s  “Simply Elemental.”  I hoped Peter would enjoy it as much as we had. I pointed out Richard Hammer’s “Glorious Glass Flowers,” but he preferred the enormous hibiscus near the pavilion. I nudged him to examine the NRV Naturalists’ “In a stream near you,” but he wanted to watch the real fish in the real stream or see the spider that had spun the web attached to one of Lauren Collver’s “Bedrock Beetles.” I carried on about the beautiful handiwork of the Textile Artists of Virginia (TAVA) who created the butterflies for “Kaleidoscope Flutters by” in the trident maple allee. He spotted a real butterfly. Why was I surprised he liked nature better than art?

DSC01639

Floyd Quilt Guild’s colorful ‘Leaf it to Quilters’ tossed in the breeze.

We had our coffee and doughnuts in the arbor. The sun was baking hot, but the air was lovely in the shade. “Isn’t this pleasant?” I sighed.

“Mmm.”

My indignant tsk tsk was loud. Why I was surprised he was noncommittal?

 “Sorry,” he said, “you know I don’t like this heat.”

“Mm-mmm,” I said.

Two women walked by just as I snapped the picture below. “He’s a masterpiece,” I joked.

They laughed. “He sure is,” one of them said.

My husband loves being the center of attention. I have lots of nice pictures from that day, but this is my favorite.

DSC01613

My masterpiece, ‘The essence of Peter.’

Header: One beauty for the “kaleidoscope” of butterflies.
(Click on photos to enlarge.)

2016 National Society of Newspaper Columnists’ contest finalist. 

On canyon’s edge!

Posted on by 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 by 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.

Screen Shot 2016-07-26 at 4.43.06 PMI 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.

Screen Shot 2016-07-26 at 2.05.30 PM©Mark Anderson, WWW.Andertoons.com

2016 National Society of Newspaper Columnists’ contest finalist.