Author Archives: judithclarkewrites

Is it Wednesday?

Posted on by under Childlike, Remember

There have been several movies showing locally in recent weeks that answered my husband’s repetitive, “Any good movies on?”

Last night we saw “A walk in the woods.” Loved the book — one of my favorites by Bill Bryson — and we liked the movie. Lots of laughs and, of course, the scenery was outstanding. The opening scene was filmed at McAfee Knob not too far from here, and the rest of the Appalachian Trail views were reminiscent of its path through southwest Virginia, though it was shot near Atlanta.

We ate at a favorite restaurant, Gillies, before the 7:00 p.m. showing. A stutter in Peter’s brain kept him glancing at a table card that reminded patrons Wednesdays were “Dinner and movie at The Lyric” nights.

“What day is it?” he asked over and over. “Wednesday? Is it Wednesday?”

Each time I nodded, his eyes sparkled because we’d chosen the right evening to go out. Suddenly, unexpectedly, he knocked his water over. It flooded across the table towards me, rained down into my chair, then onto the floor. The waitress tossed me a towel and I grabbed extra napkins to mop up.

Peter was bewildered. “Did I do that?”

“It was an accident. How many times have I done the same thing?” I asked to remind him that I’m the real klutz.

He shook his head and looked down. I would’ve been embarrassed, but he wasn’t because he didn’t remember he’d caused the mishap. He was very upset. I continued to sop, trying to stem the puddle spreading under the table and toward the feet of the woman sitting behind Peter.

DSC00709_2Suddenly, his eyes brightened again, “At least I didn’t spill this,” he said, holding his beer up. “That would have been awful, wouldn’t it, eh?” He watched carefully to make sure I got his joke.

I did.

Header photo: November walk in Leslie and Martin’s woods.

2016 National Society of Newspaper Columnists’ contest finalist. 

Tail of a dog.

Posted on by under Laughter, tears, Nag, Remember

Almost every Wednesday for the past four years, Peter and Nobby have visited area nursing homes with Bill, Peter’s faithful companion.  Nobby is the star of the weekly events, of course, and he luxuriates in the cuddles.

Last week, Bill arrived on time, as he always does, and Peter was ready, though he usually is not. As they headed out the door, I yelled, “Haven’t you forgotten something?”

Peter turned. “I don’t think so…,” he said.

I pointed to Nobby. “What about him?”

“Oh, is he going?” he asked, as if this were something new.

Well, yes,” I said. “It’s Wednesday.” Peter shook his head, disgusted with his drifting memory. Bill and I couldn’t help but laugh at the thought of Peter walking into the nursing home, red leash in hand and no dog attached.

DSC00223

More and more often these days I have to remind Peter — make that nag — that it’s time for Nobby’s walk. This morning, Nobby waited patiently by the basement door. When I called to Peter, he said, “Yes, yes, I’m coming.” Nobby flip-flopped his tail hopefully.

Finally Peter came up from the basement. I heard him fiddling with the leash. After a spate of muttering from Peter and a few yelps from Nobby, I went to investigate. They were in the laundry room. Peter was laughing so hard tears were streaming down his face. “Helped when I put the leash on the right end,” he said, sputtering.

“What, you mean you put it on his back end?”

“Yes, and he didn’t like it.”

“Poor dog! I’m sure he didn’t!” I said. “How would you like a harness around your nether region?”

Peter grimaced. Nobby got two treats.DSC00224_2

Header photo: Nobby at Pandapas Pond.

2016 National Society of Newspaper Columnists’ contest finalist. 

Rhubarb! Rhubarb! Rhubarb!

Posted on by under Favorites

Peter loves the stringy vegetable that is served as a dessert: in rhubarb pie,   rhubarb Screen Shot 2015-10-30 at 9.39.50 AMcrumble, Screen Shot 2015-10-30 at 9.31.15 AMrhubarb coffee cakes, rhubarb compote and rhubarb sauce, to name just a few. And, if you’re English, like my husband, you like your rhubarb sauce with Bird’s Custard.

I love rhubarb too. Our neighbors keep us supplied throughout the season. The final bunch Jeff delivered was last evening’s dessert. Peter ate his right after dinner. When he offered to serve mine, I said I’d wait a while.

After the evening news I went upstairs to take a shower. The shower didn’t take long, but I fiddled around straightening my closet and folding the last of the laundry. When I came back down, ready to watch “The Great British Bake-Off,” I was ready for my dessert. Peter was washing the pan I’d left it in.

“Where’s my rhubarb?” I asked. “Did you eat my rhubarb?”

“Don’t remember,” he said. “Sorry.” Humph, I don’t think he was sorry — he was licking his lips — but I know he didn’t remember!

I can forgive a lot of things, but eating my rhubarb isn’t one of them. From now on, I’ll have to camouflage my portion somehow. I already write our names on bananas, and mark the McVitie’s Digestive biscuit packages “his” and “hers.”

We’re rhubarb pie purists.
Lovely rhubarb.
“An unhappy marriage”

Rhubarb is often paired with strawberries in pies, though there are those rhubarb purists who consider the combination a “rather unhappy marriage.” Peter and I agree with the purists.

Header photo: Local Roots Food Tours, Sacramento, CA
Rhubarb pie photo: Nubi, Heidi Murphy 6/4/15
Other photos: webcam grab

2016 National Society of Newspaper Columnists’ contest finalist. 

‘I’m still here, but yet I’m gone…’*

Posted on by 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.

Screen Shot 2015-10-23 at 3.02.42 PM“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.

Screen Shot 2015-10-23 at 2.54.27 PM

*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. 

 

 

 

 

 

Oh, IOU!

Posted on by under Childlike, Laughter, Nag

Funny, the things Peter can remember. He has always had a vast repertoire of quips and come-backs, but recently he’s even added one or two. Several  months ago I was mad at him about something, then later realized I was in the wrong. “I owe you an apology,” I said.

He came right back at me. “That’ll be ten cents, please,” he said.

I laughed because he was so quick and so funny, and he laughed because he was pleased with himself.

Happened again this week. Even though I should never blame him for anything because he can’t remember what’s gone before, I was furious that he’d pulled up a fulsome Black-Eyed Susan that had been flourishing in the corner of my herb garden. “You pulled those tendrils off after I asked you to leave them alone,” I fussed.

“What did I do?” He had no idea what I was talking about. I showed him the plant, withered, literally, on the vine.  “Sorry,” he said, and I knew he meant it, though he still didn’t understand.

Screen Shot 2015-10-01 at 3.02.08 PMYesterday, after days of pounding rain, I noticed that the plant had revived. Peter hadn’t destroyed it, Mother Nature had. She’d withheld rain for several weeks, then flooded us with it. My Black-Eyed Susan slurped at the puddles .

“I owe you an apology,” I said, pointing at the yellow flowers beaming by the fence.

“That’ll be ten cents,” he said, still clueless, but quick-quipped as always.

Header photo: Our garden fence at dusk.

2016 National Society of Newspaper Columnists’ contest finalist. 

Why ask, ‘What if?’

Posted on by under Advice, Alzheimer's, Dementia, Experts say

Thirty-five years ago — April 1980 — Peter, who hadn’t yet to been persuaded to marry me, participated in a bike race in Norfolk, Virginia. It was raining lightly and roads were slick. He slid out on a curve and crashed, hitting his head. Not many riders wore helmets back then, though nearly all wore rigid leather “skid lids” that offered little protection except to the scalp. A doctor on the scene diagnosed a concussion, but after resting a bit, Peter drove the three hours home.

I was at a social do elsewhere, one that I’d begged Peter to attend with me. He’d refused. I was upset that his devotion to biking took precedence over his devotion to me.

Forward to about seven years ago and Peter’s initial diagnosis by a neurologist. She said his increasing symptoms “could be” early Alzheimer’s, while an in depth study in 2011 at the Psychological Services and Adult Assessment Center suggested Vascular Dementia, likely caused by the concussion in 1980.

What if I’d insisted he go with me on that April day? What if I’d been at the race with him and had insisted he stay in the hospital overnight? But what if Peter’s dementia is genetic? His grandfather had some form of dementia, and his father had Parkinson’s disease and dementia in his later years.

No matter what the diagnosis, the symptoms and the outcome are the same. There is still no definitive way to diagnose Alzheimer’s until post-mortem. And there is still no cure.

images-1So, my husband who once rode several thousand miles a year for fun, can no longer ride at all because 1.) his balance is shot, and 2.) he’s afraid he’d get lost if he were try a ride. His two custom bikes still live in our basement, and the “clunker” he used to ride around town gathers dust in the shed. I’ve suggested we ride together on our local trail, but he won’t. Although I wasn’t a bad cyclist myself, I was never in his class and he didn’t like to “watch the grass grow” when he rode with me. I’d looked forward to our golden years when he might not mind going at my pace. Not gonna happen.

A friend called recently to catch up. “How’s Peter doing?” he asked. I gave him the short story, then he wanted to know if Peter still biked. When I said no and told him why, he interrupted. “What about a tandem?”

I roared. The thought of Peter allowing me to ride in front while he rode stoker was, well, the laugh I look for every day.

Screen Shot 2015-09-22 at 5.18.02 PM

Header photo: Bikes parked in a commuter lot, Amsterdam, 2007.

2016 National Society of Newspaper Columnists’ contest finalist. 

Rock and a hard place.

Posted on by 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:

  1. Diminish distractions, banish background noises.
  2. Converse one-on-one because more people equals more confusion.
  3. Keep things simple, stick to short specific statements.
  4. Avoid arguments because no one will win.
  5. 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.

Screen Shot 2015-09-08 at 10.12.51 AM

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 by 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 by 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.

Screen Shot 2015-09-02 at 12.02.10 PMThen 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. 

 

Joy ride.

Posted on by under Alzheimer's, Caregiver, Childlike, Chores

“It’s the little things,” was another of my husband’s “old granny” sayings. Peter repeated the phrase often as a way to dissect any quarrels we had. We’ve never argued over the big stuff, but his whiskers in the just-cleaned bathroom sink sets me off, and he hates the way I coil up the garden hose.

Nowadays it’s the little things we do that he enjoys, although he doesn’t want to do anything that will mess up his routine. Our horizons have become limited.

Yesterday I forced myself to do errands, really boring stuff — buy dog food, find special batteries, get wood to replace clothesline poles. I figured Peter would want to go with me and, yes, he was ready within minutes. He misses being able to run the errands himself, and I miss that he can’t do them anymore. Even though I would’ve liked to come home after the last stop, I took us to lunch at a restaurant where he’d never been. That threw him for a loop because the menu was unfamiliar, as were the beer choices. I encouraged him to order a burger. Good thing it was excellent, because the beer I suggested was only so-so.

After lunch, I realized we were just around the corner from a car wash, so I whipped in there. Peter’s eyes were like a kid’s at Christmas. I had to laugh. I pulled the moon roof back so we could watch the giant mops swish over us. After his initial, childish delight, his engineering persona took over and he marveled how the washing system was set up. “How’d they do that?” he asked, as he always does of anything that smacks of good engineering.

Screen Shot 2015-08-30 at 10.24.43 AMFor Peter, it was a perfect day out. For me, I’m glad such a little thing made him happy…I still hate to run errands though.

 

There are two types of people in this world, those who would take an Alzheimer’s patient on a joy ride and those who would say it was
a waste of gas.”

Header photo: My sun roof gets washed.

2016 National Society of Newspaper Columnists’ contest finalist.