Keep on the sunny side of life.

Posted on February 10, 2016 by judithclarkewrites under Advice, Caregiver, Chores, Problems

For years and years, long before dementia took control of our lives, if I asked Peter to take the garbage out 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.

Before 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 with 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.

Header photo: Eggs over easy

2016 National Society of Newspaper Columnists’ contest finalist.

What lurks in the shadows of his mind, cont.

Posted on February 6, 2016 by judithclarkewrites under Alzheimer's, Caregiver, Remember

Same evening. Further attempts to talk in the noisy restaurant. Same puzzled expression on my husband’s face.

“What do you think it’ll be like fifty years from now?” he asked. He spread his hands and flapped them around.

“Here? This restaurant?”

“No-o. The world. Here. How many people will there be? Will they all fit?”

“Fit? I don’t know.” I said. He poses this sort of question a lot.

“This is a small island you know…” he said.

“Island? What island?”

“England. Scotland. Ireland. Wales.” He nodded, proud of himself.

“Peter, where do you think we…”

He slapped his head. “Oh, silly me. We’re not there, we’re here.”

“Where? Where do you think we are?” I asked.

He squeezed his eyes shut and shook his head. “Virginia?” he said at last, then asked, “Did you know me before I got like this, before my mind went away?

“I did.” I said. “I remember. We met forty-two years ago. Your mind was fine back then.”

“Oh you, you remember everything,” he said.

“Someone has to.” I said. I knew what was coming.

He sighed. “What would you do without me? No, no, I mean…”

“What would you do without me?” I asked, as I always do.

He laughed. “That’s a good one, isn’t it?” He loves his own jokes.

Header photo: Lighthouse, England.

2016 National Society of Newspaper Columnists’ contest finalist.

Sweet tooth, Sweetheart?

Posted on January 22, 2016 by judithclarkewrites under Caregiver, Childlike, Chores, Laughter, tears

He squeezes the bottom, I squeeze the middle…of the toothpaste, that is. Who squeezes where has never been a problem in our marriage.

What is a problem these days is Peter’s obsession about having toothpaste. In spite of the tube on the sink and a new one in the cupboard, he always writes “toothpaste” (actually, touthpaste) on his ever present shopping list. He used to walk the two blocks to the grocery, but he doesn’t go on his own anymore. Neither does he give me his list which always includes string as well. I don’t understand that either.

His toothpaste concerns befuddle me. I wonder, does he remember rationing as a child during World War II? Toothpaste wasn’t rationed in England or here, but in both countries a purchaser had to turn in the used metal tube in order to purchase another. I remember my mother carefully slitting the tube open to scrape out the last traces of toothpaste. I thought she was being too particular, but apparently that was the only way she could buy more. The metal was recycled for the war effort.

Even though we have a drawerful of the toothbrushes the dental hygienist gives us, toothbrushes are always on his list too. About once a month he goes to the grocery with me. Grocery-getting is my least favorite of all household tasks because it is so labor intensive. Plus, keeping my husband in sight is like tracking a three-year-old in a toy store. He doesn’t think it’s a problem, so I try not to complain.

When we finally meet up, my large cart is overflowing. Peter’s small one has only beer and a Hershey bar inside. I ask about toothpaste.

“It’s OK,” he always says, “I’ll get it another time.”

Maybe he puts toothpaste on the list to justify the Hersey bar? He used to buy flowers occasionally, but now it’s chocolate for himself. And he doesn’t share.

Even this silly story makes me laugh, sad though it is.

Header photo: Peter always enjoys lunch out.

2016 National Society of Newspaper Columnists’ contest finalist.

‘I can’t go back to yesterday because I was a different person then.’

Posted on January 13, 2016 by judithclarkewrites under Caregiver, Chores, Helpful hints, Remember

Losing car keys doesn’t mean Alzheimer’s disease is lurking, but forgetting what the keys are for might. That’s a simplistic example of the difference between simple forgetfulness, and a more serious problem.

I asked Peter to put some towels into the washer. He went to the laundry room and stood in front of the washer and dryer, muttering. After a few minutes he said, “Which one do you want me to use?” Since he hasn’t done his own laundry in forty years or more, the question wasn’t too surprising.

On the other hand, I’ve been doing weekly laundry for more than fifty years, but lately I simply forget it until I realize I’m out of underwear! I do know which appliance is the washer, which, the dryer.

Once upon a time I was so organized that my brain was a calendar, neatly compartmented with to-do lists. I never left work without clearing my desk and writing a chronological list of the next day’s projects. When Peter left work, papers were an avalanche waiting to happen. Pens and pencils were strewn like trees in the Midwest after a tornado. Dust bunnies raised families in the crevices of his desk chair.

Now, both his desks look like a military parade: pencils and pens aligned at right angles to the front edge, calendars hung at studied levels — turned to the wrong months however — and stacks of coins in ranks as if on review. His other desk, the one dedicated to model ship building, is arrayed similarly: special brushes and tiny tools in rows, regimented.

My desk looks as if the recycling truck backed up and dumped a load of papers, boxes, sticky notes and Mentos wrappers. Every few weeks I attempt to organize my desktop and files. The mess is viral.

Household chores? While Peter attends to his self-assigned tasks, I seldom even clean the coffee maker anymore. For many years I had a rigid first-Friday-of-the-month routine: run vinegar through the coffeemaker, use baking soda and vinegar in all the drains, and turn the mattress, end-to-end one month, side-to-side the next.

Back then, flipping the mattress made us laugh so much we couldn’t lift the thing. Neither of us remembered, one time to next, how to do it, end-to-end or side-to-side, without demolishing the ceiling fan. Last week, I realized we hadn’t turned the mattress in months. I called Peter to help.

We’ve never agreed how to do it. In the past we laughed at our contortions, but this time we barely managed to heft it, much less laugh.

Time was, I vacuumed and dusted obsessively. Now I have Carri who does it for me, and if she’s away, I don’t bother. Peter likes to “Hoover,” as he calls it, but insists on parallel lines across the rugs. He combs their fringed edges with a fork. I wish his hair looked as good.

We’ve reversed habits. His new obsessiveness stems from a need to have control. My escalating lack of organization says I have more chores than I can manage, so I let everything slide. Peter can’t help himself, but I really must revive my routines.

A magic wand might help!

Quote at top: Lewis Carroll, Alice in Wonderland

2016 National Society of Newspaper Columnists’ contest finalist.

It’s the little things.

Posted on December 14, 2015 by judithclarkewrites under Caregiver, Childlike, Control

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

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

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

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

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

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

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

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

“What beeping?” I yell back.

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

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

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

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

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

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

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

“What do you have?”

“Suguk wrap.” I order for him.

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

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

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

I swap our plates.

It’s the little things that make him happy.

Header photo: Baclava, two please.

2016 National Society of Newspaper Columnists’ contest finalist.

‘In November, people are good to each other…’

Posted on November 7, 2015 by judithclarkewrites under Caregiver, Thankful

I’ve always liked November’s skill at blowing the warm months away with icy jabs, but I didn’t know it was special for any reason other than Veteran’s Day, our granddaughter’s birthday and Thanksgiving. A surprise delivery of flowers from “The Soul Sisters” a couple days ago changed that. The card was inscribed “Happy National Caregivers’ Month, for the woman who defines caring.”

Me?

I assumed sisters meant Carolynn and Leslie, so right away, I took a selfie and sent them a thank you. Les replied she wished she could take credit, but she could not. Later, Carolynn wrote, “They’re from Robin and me, Mom, we’re soul sisters. Leslie and I are are blood sisters.” She said she’d never heard of National Family Caregivers Month either, but Robin had.

Leave it to Robin. Carolynn’s best friend is probably the caring-est person I’ve ever known. She’s a go-getter caregiver, a whirlwind, a hurricane.

Robin and Carolynn with their autumn paintings

Carolynn and Peter.

Peter and Leslie.

Blood sisters Leslie and Carolynn with me sandwiched.

Soul sisters, Robin and Carolynn

Peter answered the door when the flowers were delivered. I figured someone was selling something so I was shocked to see a pleasant young man holding a bright arrangement of autumn flowers. “Are you Judith?” he asked.

“Yes-s…”

“These are for you. Have a wonderful caregiver’s month.” I managed to thank him before he bounded off.

Peter’s chin was glued to my shoulder when I opened the card. “Who are they from?” he asked. When I said “Carolynn and Leslie” he wondered why they’d sent flowers? “Is it Clarke with an ‘e’?” he asked. “Maybe there’s another Judith Clarke on this street. Are you sure they’re for you?” he pestered.

I didn’t want to get into an explanation about caregivers, which he wouldn’t understand anyway, so I said, “Even if they’re not for me, I’m gonna’ keep ’em.”

I kept them.

Header photo: November leaf in the woods.Title: line from In November, a book by childrens’ author Cynthia Rylant.
Leaf graphic: Alzheimer’s Prevention Registry

2016 National Society of Newspaper Columnists’ contest finalist.

‘I’m still here, but yet I’m gone…’*

Posted on October 23, 2015 by judithclarkewrites under Alzheimer's, Caregiver, Dementia, Laughter, tears, Remember

At Leslie’s birthday celebration, one conversation centered on movies that induce tears. Granddaughter Samantha, a real ham when she wants to be, told us about a “romantic comedy” she’d seen that had a horrific ending. She was indignant. She sobbed. When Leslie’s friend Kenna added her observations and her tears to the story, the rest of us howled. I seldom cry, and “Lassie come home” and “The Fighting Sullivans” are the only movies that moved me to tears, ever.

“I’ll be me” is the 2014 film about country singer Glen Campbell and his Alzheimer’s-inspired farewell tour. It has been in theaters, but I found it on Netflix.

I watched it secretly. I didn’t want Peter to watch me watching it, even though I don’t think he would recognize himself in Campbell. I’ve slowly come around to admitting to myself that my husband has Alzheimer’s, though I say “dementia” to him if he questions why he can’t remember things. Dementia is an umbrella, Alzheimer’s, a hurricane that turns the umbrella inside out.

When Campbell was diagnosed in 2011, he chose, with wife Kim’s encouragement, to have his farewell tour filmed. He wanted people to know he had the disease, but could still sing and play guitar. “Hell, I’m not done yet,” he said.

A camera was there to follow him as his brain was scanned using the newest and most definitive diagnostic techniques. The camera was in the doctor’s office when he and Kim heard the dreaded words: “Highly probable that you have Alzheimer’s Disease.” Cameras followed him on his final tour that was to be three to five weeks, but turned into 151 performances worldwide. As long as the singer could keep going without too many hiccups his wife, children, and musicians thought he should continue doing what he loved.

My husband can’t sing, though he thinks he can, and he doesn’t have an entourage to bolster him. But his sense of humor — wacky, corny — is like Campbell’s. Peter is handling his downward spiral the way Campbell does: hiding behind stoicism, silliness, and wild excuses. Bluffing, in other words.

Campbell is 78, a year older than Peter. The singer can no longer put words together intelligibly — aphasia — though he still plays his guitar. Peter has a hard time finding words and seldom says much, especially in a group. He’s never been a talker, so his lack of conversation is nothing new to those of us who know him.

The film was a Bandaid to my soul. Seeing that Campbell continues to clown around the way he always has, using goofiness to camouflage his fading memory, was like watching my husband. Peter’s clowning not only saves us — it’s impossible not to laugh — but it lets him think he’s fooling me and anyone else who’s around. Occasionally, a look crosses his face that says, I know I’m being silly, but it’s all I have left.

Some of Kim Campbell’s asides resonate. In two scenes, there are shots of the singer holding up plates and licking them clean. In a cutaway, she says, “I get so mad at him when he does that…I tell him it’s bad manners…I go into the pantry with my plate and sit on a stool to eat.” Later, she says tearfully, “I know he can’t help it, but I don’t like to see him that way.” Her words helped me feel better about my own reactions to my daily triggers.

The singer now calls his wife of 32 years Mrs. Campbell. Her laugh is sad.

“I guess my message to caregivers is, stop to look on the bright side …. Make the best of a bad situation.…” When asked about the message, she said, “This film is funny…uplifting. Yes, it deals with Alzheimer’s, but it’s not a downer…not depressing. You learn a lot and it’s very educational. … We want people to know that it’s just full of laughter. Because people might go ‘Oh, it’s about Alzheimer’s. I don’t want to go see this film.'”

“I’ll be me” is funny, yes, but I confess, it’s now on my list of movies that make me cry. It is a must-see.

*First line of “I’m not gonna miss you,” the last song Glen Campbell recorded.
Songwriters: Julian Raymond and Glen Campbell.
Lyrics © Warner/Chappell Music, Inc., BMG Rights Management US, LLC
“I’ll be me” directed by James Keach; produced by Trevor Albert and James Keach

2016 National Society of Newspaper Columnists’ contest finalist.

Rock and a hard place.

Posted on September 8, 2015 by judithclarkewrites under Alzheimer's, Autism, Caregiver, Dementia

I scan the web often for caregiver tips that might help me help my husband…or help me help myself. These five points, about talking with an Alzheimer’s patient, are so important:

Diminish distractions, banish background noises.
Converse one-on-one because more people equals more confusion.
Keep things simple, stick to short specific statements.
Avoid arguments because no one will win.
Just keep talking even if they can no longer respond.

Number four is my bugaboo. I always try to prove my point, establish that I’m right, or explain when no amount of explaining will make any difference. Peter and I both are argumentative, always have been. Even now when everything in our lives has turned upside down, that need be right still rises to the top like pasta on the boil.

I’ve long since learned that numbers one through three are the best ways to interact with him, but I figured that out while trying to understand more about his place on the autism spectrum (ASD). It has always been difficult for me to have any meaningful conversation with Peter, so to keep him focused, I try to pick the right time to have a conversation (1), and I know from experience that he zones out if several people are talking (2), plus I attempt to keep to one idea at a time (3). Peter has never been one to chat, so I’m used to talking without response (5).

It has always been way more difficult for me to deal with his ASD than with his dementia, even though he can’t help either condition. I battle with myself daily. He can’t help it, he-can’t-help-it, he-can’t-help-it.

There has been some research that has shown that people with ASD might be more predisposed to some form of dementia than the general population. I’ve wondered about that for years. If science proves there is a link, at least I could argue that I was right.

Header: Lake Louise, BC. Peter tries to lift a rock to bring home for Carolynn’s collection. (8/31/10)

2016 National Society of Newspaper Columnists’ contest finalist.

Where the laughs come from.

Posted on September 4, 2015 by judithclarkewrites under Caregiver, Childlike, Experts say, Laughter

“Take off everything but your underwear,” the nurse said, handing Peter a gown. We were at the dermatologist’s office and she’d just finished asking him a list of questions. The only one he could answer was his birthdate. “Oh, I get it, you brought your wife so she could answer the questions for you, didn’t you?” she laughed. “Doctor J will be in shortly,” she said as she left the room.

Peter looked at me. “What am I supposed to do?”
“Take everything off except your underwear,” I told him.
He took his shirt off. “Is this enough?”
“No, everything but your underwear.”
As he stripped off his trousers he said, “Good thing I wore underwear today.”
I burst out laughing. I never know where the laughs will come from, only that they’ll come.

Next he took his shoes and socks off. As he bent down to put them under the chair where he’d draped his clothes he caught a glimpse of himself in the mirror on the door. “What the heck?” he said, grabbing his shirt to hide behind. “Oh, I thought that was a window. I was going to cover myself up,” he sputtered, laughing at himself.
When I stood up to tie his gown in back, he said, “I guess that’s why you’re here, to tie this thing. What do people do if they’re by themselves?”
“They either bring me along or let it all hang out,” I told him.

Doctor J came in and examined Peter carefully. He has had several suspicious spots removed in the past several years, as well as a large squamous cell carcinoma. Peter always asks, “What causes them?”
“Sun damage mostly.”
“Pfft, I’m never in the sun,” my husband will scoff, blowing off the expert opinion.
After the doctor zapped a couple places, he pronounced Peter good to go for another six months.
“Six months? I have to come back in six months?” He couldn’t believe it. “Why?”
“Because you have precancerous spots,” the doctor explained. “We need to keep a check on them.”
“What causes them?”

After he dressed he looked down at his shoes and asked where his socks were. I looked at him and hoped for the light bulb moment. “They’re in you’re shoes,” I said finally.
“Wasn’t that clever of me to put them there?” He watched me to see if I’d laugh. I did.

Header photo: Peter walking, not in the sun.

2016 National Society of Newspaper Columnists’ contest finalist.

Answer the phone already!

Posted on September 2, 2015 by judithclarkewrites under Alzheimer's, Caregiver, Laughter, Remember

The home care manager with our health insurance company — I’ll call her “K” — phones each month and asks for Peter. Since my husband will neither answer nor talk on the phone, I take her questions. Or if I’m busy, I’ll say the timing isn’t convenient. I hope she doesn’t get upset when I put her off. She sounds very sweet, and she is just doing her job.

Yesterday was different. When she called, I simply handed the phone to him. He glared at me. “Hello?” He was wary. “Oh, so far, so good,” he said, his stock answer these days when anyone asks how he is. When he answered “Six each morning,” I knew she’d asked about his medications. “What do I take every day?” he stage-whispered to me. I was up to my elbows in sudsy water cleaning cupboards, so I yanked a drawer open and showed him the prescription bottles so he could read them off.

Next she asked about his exercise. “Yes, the dog still walks me every day, twice a day. Yes, nursing homes every week…no, oh no, not for me! Nobby visits the people who live there. No, they don’t want to see me,” he laughed.

She already knew all the particulars from talking to me, but I was glad I’d made him take the call because it forced him to talk. I constantly try to engage him, to draw him out. It’s exhausting.

“K” had a few more things up her sleeve. “Hm, let me ask the wife,” he said. I glared at him. He knows — he hasn’t forgotten this — that I HATE being called “the wife.” “Do I have any doctor appointments?” he mouthed as if it was a secret. I told him the dates.

Then came the routine cognitive impairment questions: day of week, month, year? Peter thought she asked because she didn’t know, so he walked over to the dry erase board I update every morning. “No you don’t,” I yelped, quickly wiping the board clean with my finger. “She wants to know if you know!” He tried to get around the corner to the calendar, but I blocked that too. “You sneaky devil,” I said. Of course I laughed.

He chuckled and told her, “My wife [he didn’t say the wife this time] won’t let me look at the calendar, but I know it’s August…um, tenth? Year? I know it’s two-thousand-something…thirteen? Oh-h, twenty-fifteen! Already?”

I’m sure the conversation left her laughing. It did me.

Header photo: JodyWissing, Digital Fondue, (11/16/10)

2016 National Society of Newspaper Columnists’ contest finalist.

Dementia isn't funny.

Caregiver Judith Clarke looks for laughs every day.

Category Archives: Caregiver

Keep on the sunny side of life.

What lurks in the shadows of his mind, cont.

Sweet tooth, Sweetheart?

‘I can’t go back to yesterday because I was a different person then.’

It’s the little things.

‘In November, people are good to each other…’

‘I’m still here, but yet I’m gone…’*

Rock and a hard place.

Where the laughs come from.

Answer the phone already!