No such thing as too much chocolate.

Posted on May 15, 2016 by judithclarkewrites under Alzheimer's, Caregiver, Chocolate

Being a caregiver to an adult who has some form of dementia is a bit like being the mother of a two-year-old.

We’d been to Lowe’s, stopped off for a coffee and scone, then went to Home Depot. I was on a mission to find a new exhaust fan that met certain parameters. Quick in and out, that’s my motto for running errands. I was speeding through Home Depot when I realized Peter was no longer tailing me.

I turned around a saw him studying a display. It was a rack of candy bars. He saw me coming, gave me his innocent little-boy smile and said, “Just seeing what there is.”

“You just had a huge scone…” I said, ever the grumpy mum.

“That was ages ago.” (Fifteen minutes is a long time in dementia years.)

I had one more stop before heading home, but because Peter seemed in such a good mood, I suggested we detour to the shoe store. “Do I need shoes?” he asked.

“You’ve complained for weeks you ‘have no shoes,'” I said, steering him to the men’s section.

“What am I looking for?” he asked.

“Replacement for those worn brown ones,” I said.

“I like them…”

“We’ll find some you’ll like just as well.” I zoomed in on the style he’s always favored, something between a sneaker-look and a semi-dressy casual shoe. I pulled several out.

“What size do I wear?” he asked.

“I don’t know! Eight, I think,” I said, frustrated because he didn’t know. He tried them on, but became obsessed with finding his toe under the leather. “Lace them up, then walk in them,” I said, as I would’ve said to a toddler.

“But my toe!”

“Does it hurt? Aren’t they comfortable?”

“No, doesn’t hurt. Yes, they’re comfortable.”

Hallelujah. “Great! Let’s buy them in black too. They’re really nice,” I said.

He grimaced. “No, not the same shoe.”

I tried the rationale I use on myself. When I find a pair of shoes I like, and if they are available in another color, I buy both pairs. I added that the second pair would be fifty percent off.

We bought one pair.

I was so exhausted I went directly home without finishing my errands. Maybe if I’d bribed him with a Hershey bar?

Chocolate-dipped Adidas Yeezy 750 Boost sneaker designed by Kanye West.

Header: Shapeways edible chocolate shoe

2016 National Society of Newspaper Columnists’ contest finalist.

Bragging, right?

Posted on May 11, 2016 by judithclarkewrites under Caregiver, Good news

At the urging of my friend Kathie, I submitted three posts from this blog to the National Society of Newspaper Columnists Contest, Online Blog, Multimedia Under 100,000 Unique Visitors Category. Whoo, a categorical mouthful!

In a May 6 email from Cathy Turney, NSNC Column Contest Chair, she informed me that I was one of three finalists in that category.

My happy dance shook the rafters. There might even be a hairline crack in the foundation. I so wanted to tell Peter about it, babble on and on the way I used to do when some small triumph came my way.

But I can’t, not anymore. I’ve told him about this blog, as well as my other one, “Wherever you go, there you are.” He isn’t the least bit curious. I’ve tried to encourage him to read some posts, but he simply will not. Maybe he cannot. I’m not at all sure he can read very well anymore. He can’t concentrate long enough to remember the plot, and he often asks me the meaning of words. Typical of Peter, he jokes about it, deliberately mispronouncing a word he doesn’t recognize.

There are days when I think he’d enjoy some of my shorter posts because the blog centers on him. He likes to know he’s noticed, a star in his own galaxy. Yet there are other days, too many lately, when knowing that I write about him would infuriate him. He’d retreat to what I’ve always called his “Mt. Rushmore mode.” Stoney. Silent.

So, except for an email in all caps to Carolynn, Leslie and a few others, I’ve been mum. Until now. Maybe I’ve earned bragging rights.

I wish I could share my excitement with my husband and that he could understand my thrill.

I with I had no reason to write this blog. Dementia really isn’t funny.

“Dementia isn’t funny” NSNC contest entries:
“Magic pills? Wonder drugs? Snake oil?”
“Chips, a food group unto itself”
“It’s the little things.”

Header photo: Peter and I at granddaughter Samtha’s college graduation.

2016 National Society of Newspaper Columnists’ contest finalist.

Dementia moment.

Posted on May 6, 2016 by judithclarkewrites under Alzheimer's, Caregiver, Dementia

Everything that could go wrong did go wrong these past several weeks. From our backed-up sewer pipe that breached the basement, to new stove installation that was a disaster start to finish, to Peter’s emergency eye problem, an infuriating parking ticket, and a television on the blink for five days.

The latter was the worst of it, in a way. Television is my husband’s friend. He’ll watch almost anything and lots of it.

This morning, when the technician departed after sorting our t.v. problems and the plumber left after he attached, properly, the gas line to my new range, Peter’s unsolicited hug was a welcome surprise.

“Sorry I’m no use to you anymore,” he said. I hadn’t realized he understood my frustrations dealing with all our problems on my own.

I hugged him back. “I’m sorry too,” I said. “But look, you’re here. That’s good use of you!”

He smiled and gave me another squeeze. It was moment I’ll remember, even if he won’t.

Photos: Not fade away by Rachel B. Hayes, 2015. Site-specific installation at The Taubman Museum of Art, Roanoke, Virginia, through 11/6/16.

2016 National Society of Newspaper Columnists’ contest finalist.

The right eye had it.

Posted on May 2, 2016 by judithclarkewrites under Caregiver, Dementia, Remember

As weeks go, last week was awful. Monday our sewer line backed up into the basement. And we had guests. I’m sure they were glad to leave Tuesday.

Things continued downhill — thank me for not sharing details. By Friday, I was knackered. I took Nobby to the vet at three o’clock, and promised myself I would relax afterwards with a cup of tea and the book I’d been trying to finish. Never happened.

Leslie called to ask if we wanted to meet for dinner then go to “My name is Doris.” Yes! Just what I needed. A meal I didn’t have to cook and a few laughs.

I encouraged Peter to take Nobby for a quick walk, while I made myself presentable. But before the leash was fastened, Peter came upstairs covering his right eye with his hand and a handkerchief. “Something in my eye… hurts…geez!” It was watering and red, but I couldn’t see anything. I suspected he’d scratched his cornea. From experience, I knew how it hurt. A warm water rinse didn’t help, nor did the drops I had on hand. I took him to “speedy” urgent care, and let Leslie know we wouldn’t join them.

Start to finish, we were there more than two hours, the final fifteen minutes of which my husband charmed both nurse and doctor. He was his chatty best, happy to have a new audience.

“Where are you from?” the doctor asked.

Oh, heavens, I begged silently, give her a straight answer. After mulling his usual responses he said, “Hammersmith.” Different from his usual, “Oi’m from London, int-eye?” He added, “‘Burrah’ [borough] of London,”

She laughed. “That’s what I thought.” She told him she’d been to England several times and loved it. “I probably like Scotland even more though,” she added.

“Ooo, caw, they tauk funny up there,” he said.

The nurse took over when the doctor left the room, then we were free to leave. “Cheerio,” the doctor called as we headed down the hall.

Peter embellished his “Cheerio” with a Dick VanDyke double-hop-skip out the door. What could we do but laugh?

Saturday morning, he had just gotten up when I returned from my walk. His eye was puffy, weepy. “How does it feel this morning?” I asked.

Confusion spread across his face in italics. “How does what feel?”

“Your eye! Don’t you remember how it hurt last evening…we went to the clinic…didn’t have any dinner?” If anything, he’d remember not eating.

“I can’t remember anything, you know that,” he said.

Sometimes, I suppose, there are advantages to having dementia.

Header photo: Peter on our trip to Alaska, 2006

2016 National Society of Newspaper Columnists’ contest finalist.

Hello! My name is…

Posted on April 22, 2016 by judithclarkewrites under Laughter, tears

Bad enough that our doctor and our dentist have the same last names. Not only that, but our doctor and Peter’s dermatologist have the same first names and very similar last names. Add to that my childhood friend and another friend from the not as distant past have the same first names. The former’s husband has the same first name as the latter’s surname.

My poor husband doesn’t have a chance of keeping all that straight.

Recently, while Skyping with our friends in England, Martin and Anna, Peter was confounded by a question Martin asked. He came running to me, mid-Skype, to ask about “an old house.” I had no idea what he was talking about, so I followed him here, to my computer. “That house,” Peter said, pointing to a small painting of our previous home on the wall behind him. His friend could see it as they talked, and wondered about it.

Peter with son-in-law Martin.

“Martin painted that for me for Christmas about thirty years ago,” I said.

“Martin? Martin doesn’t paint,” Peter scoffed, while his friend laughed on the other side of the Atlantic.

“No-o, not that Martin,” I said, “son-in-law Martin!”

“Oh,” he said. “Well, anyway, I don’t remember that house.”

“Peter, we lived there seventeen years,” I said, frustrated. I loved that house, loved living there. He shook his head. Nope, he neither remembered the house, the little village, nor that Leslie’s husband Martin painted the picture. Peter’s old college mate sat at his kitchen table chuckling, not that the confusion was really funny. But, might as well laugh as cry, eh?

Mates of old.

Header photo: Peter and his best mate Martin.

2016 National Society of Newspaper Columnists’ contest finalist.

Call a spade a spade.

Posted on April 12, 2016 by judithclarkewrites under Alzheimer's, Defined, Dementia, Experts say, Laughter, tears

From Sally Hepworth’s touching, witty, insightful, heartbreaking novel, The things we keep, these two paragraphs jumped off page 21 and imprinted themselves on my brain and on my heart:

Dr. Brain once told me that an Alzheimer’s brain was like the snow on a mountain peak—slowly melting. There are days when the sun is bright and chunks drop off all over the place, and there are days when the sun stays tucked behind clouds and everything remains largely intact. Then there are days — spectacular days (his words) — when you stumble across a trail you thought was gone forever.

“I get the feeling that since the analogy involved the words “mountain peak” and “spectacular,” Dr. Brain thought this news wouldn’t be depressing to hear, when in fact, the opposite was true. I think I’d have felt better about my prognosis [Anna is 38 and has early-onset Alzheimer’s] if he’d reworded a little. Something like, The brain is like a filthy, stinking pile of crap. When the sun comes out, it stinks worse than you can imagine, and when it’s cold or cloudy, you can barely smell it at all. Then there are the days that, if the wind is coming from a certain way, you might catch the cold scent of a spruce for a few hours and forget the crap is even there. With that analogy, at least we’d have been calling a spade a spade. Because the truth is, if you have dementia, your brain is crap. And even if you can’t smell it right this minute, it still stinks.”

Graeme Simsion, The New York Times bestselling author of The Rosie Project, praised The Things We Keep, with these words: “A compelling read that touches on important themes, not least the different forms that love may take.”

The things we keep is a book to read and read again. Both funny and sad, it’s a page-turner I raced through, but a book that I didn’t want to end. I don’t know if Hepworth has first-hand knowledge of Alzheimer’s or if she just has a brilliant imagination. Whatever, she has captured what I think I see happening in my husband as the disease increases its grip. And, yes, it stinks.

Header photo: Violas overrun my flower beds.

2016 National Society of Newspaper Columnists’ contest finalist.

Don’t kick the buckets, fill ’em!

Posted on April 7, 2016 by judithclarkewrites under Advice, Alzheimer's, Caregiver, Experts say, Helpful hints

There are bucket lists and then there are bucket lists. The former includes trips to take, books to read, movies, to see. The latter, “buckets of information,” are different entirely.

Sandy Markwood, chief executive of the National Association of Areas of Agencies on Aging, describes three buckets of information that caregivers must organize — Health, Financial, Legal.

Used to be, I was Org-An-Ized. I had a master list of my lists. But then, as my caregiving responsibilities escalated, daily crises took precedence and my organization crumbled. I had at least managed to fill the Health Bucket with the things Markwood suggested: list of doctors, medications, medical history, health and long term care insurance paperwork, and emergency contacts. The medications’ information is in the kitchen drawer with all our prescriptions. And I make copies for us to carry in our wallets. Peter never remembers he has his own list, and doesn’t understand why he has to carry a list of mine. Both daughters know where pertinent information is, though responsibility rests heavily on Leslie’s shoulders because she lives nearby.

The Legal Bucket contains wills, financial power of attorney, medical power of attorney, living will, and caregiving plan. The latter should be shared with family and anyone else connected to the loved one to help avoid a frantic search for a critical legal, health, or financial document during a crisis.

The Financial Bucket contains birth certificate, mortgage/rental documents, bills, bank records, passwords for online accounts and contact information of financial advisors. I’ve corralled all that at last.

Passwords, necessary to access nearly everything in every bucket for everyone, are maddening to keep up with. Seems every few days I have to change an old one or concoct another for a new purpose. I love the line, I changed my password to “incorrect” so whenever I forget it the computer will say, “Your password is incorrect.”

Except for the time, years ago when I was a single mom, I hadn’t had to do the taxes or pay the bills during our marriage. For most of our thirty-five years, I was in charge of spending, not keeping track. Anything to do with numbers makes my stomach turn inside out, yet now I’m in charge of the things Peter once could do easily. The best thing I ever did was find an excellent financial adviser. I don’t know how he puts up with me, but somehow he keeps me straight. I strongly advise anyone who walks in caretaker shoes, to find a good financial adviser.

Time was, Peter got cash from the bank every week or so. If I said I needed money he’d hold out some bills for me. But when I tried to pull out a couple he’d tighten his grip so I couldn’t take hold. He was always too quick for me, and we always laughed. I called him affectionately inappropriate names. Now I take care of having cash on hand. When I hold money towards him and grasp it the way he used to do, he still laughs, but I’m not sure he remembers why.

Header photo: Chickens in a garden on Isles of Scilly, England, June 2010.

2016 National Society of Newspaper Columnists’ contest finalist.

Fresh fish get slapped.

Posted on April 4, 2016 by judithclarkewrites under Childlike

Friday’s outing included lunch at Montano’s, our favorite restaurant in Roanoke. We’ve eaten there every month or two for years. We recognize most of the waitstaff, and they us, and they always know Peter will order a Guinness.

The other day, our waitress was new to us. They no longer have Guinness on tap, so she brought him three choices of bottled Guinness — Draught, Black Lager, and Original. “What do I have?” he asked. I ordered the Draught. Peter studied the menu as if he’d never seen it. I’d already decided to have the special — fresh cod tacos.

“Ready to order, Sir?” the waitress asked as she came by a third time.

He looked at her with a mischievous glint in his eyes. I cringed. “I’ll have the ‘chis and fips,'” he said.

“I’m sorry?” She glanced at me and leaned closer to him.

Peter chuckled. “Fish and chips, I’ll have fish and chips,” he said. An apology was embedded in my weak smile. She winked.

“I’ve got to stop doing that,” he said.

“Yeah, yeah, that’ll be a cold day in hell.”

“But it’s warm today, I left my jacket in the car.”

“Mm-m,” I said.

When our food was delivered, he looked at my plate. “What’s that?” he asked.

“Fresh cod tacos. They’re really good. Want a bite?”

“Do I like that?”

“You’ve never had a cod taco. Neither have I, but…yum,” I said, trying to tempt him.

“Is the fish fresh?”

“Any fresher and I’d slap it,” I said.

Took him a few seconds to get my little joke, but he finally laughed. I confess, I didn’t come up with the line. I saw it on a shop in London’s Borough Market years ago.

He never did try my taco, but I didn’t give him another chance either.

Borough Market sushi shop, London, April 22, 2006

Header photo: Atlantic Cod, Saipal/Flickr (CCBY 2.0)

2016 National Society of Newspaper Columnists’ contest finalist.

A haircut doesn’t hurt.

Posted on April 2, 2016 by judithclarkewrites under Childlike

Lourie has been cutting my hair for years, and Virginia has been washing my hair as long. Now Lourie also cuts Peter’s hair and trims his beard, against his grumbling protests, I might add. He argues, complains and pouts. He’s worse than a three-year-old getting his first haircut.

Virginia’s magic touch puts him in a good mood, and Lourie, who’s been in the biz for thirty-four years, puts up with his nonsense with her signature bubbly laugh. She jollies him along and is a perfect audience for his jokes, the old routine I’ve heard a million times.

After I sneak a photo of the event around the corner, I sink into a chair, totally relaxed, knowing he’s in good hands. I doze.

Peter comes out looking like his old self — younger and smiling. Lourie and her flashing scissors did their usual excellent job. Win, win!

Header photo: Lourie keeps Peter laughing while she cuts his hair.

2016 National Society of Newspaper Columnists’ contest finalist.

Who’s the granddad?

Posted on March 18, 2016 by judithclarkewrites under Caregiver, Experts say, Sickness & Health

The doctor asked Peter if he had grandchildren. Peter shook his head slightly, but looked at me. “I don’t, do I?” he said. I raised my left eyebrow and nodded. “Sam and Miah?” he asked, obviously still puzzled.

Doctor T is our family’s doctor. He’s taken care of our grandson since he was born twenty-two years ago, and Leslie, Martin and Samantha even longer. “Who’s your grandchildren’s grandfather,” he asked next with a twinkle in his eyes.

Peter thought a long time. “It’s not me, is it?”

“You’re the only grandfather they’ve ever known,” I told him.

“But they’re your grandchildren,” he said, “they’re not really mine are they?” (Their paternal grandfather died before they were born, and they met my ex-husband just once when they were in their teens.)

“You’ve known them and loved them all their lives, haven’t you?” The doctor smiled.

“Yes, oh yes!” Peter, aka Dad-Dad, answered. When Sam was about two we tried to teach her to say “Granddad” but she could only manage “Dad-Dad.” That’s who he’s been for more than twenty-seven years now.

The questioning took place at our semi-annual prescription/follow-up check. I schedule them back-to-back to save time. When Dr. T asked Peter how he was doing, he said, “I’m fine, no problems. The dog walks me twice a day.” That’s one of his standard conversational phrases.

“How do you think he’s doing?” the doctor asked me.

I sighed, I’m sure. “He’s more forgetful…and he’s having nightmares, kicking a lot. He kicked himself out of bed two weeks ago…” I could tell my husband didn’t believe me even though I’d told him it had happened. “And he carries on coherent conversations in his sleep sometimes…”

“Pffft, that’s not me talking,” he said, “I’m not a talker!”

“Not when you’re awake, but you are when you’re asleep.”

Doctor T laughed at us. “Actually the kicking isn’t really caused by nightmares,” he said, telling us the unpronounceable name for the condition. “I can ‘up’ your Aricept prescription slightly and that should take care of it. We don’t want you hurting yourself or your wife with ‘soccer ball’ kicks!” Peter laughed at that.

During my separate follow-up session, the doctor asked if I was doing OK. I waggled my hand and gave my standard, can’t complain too much answer. “There are caregivers who have much worse to contend with,” I said.

“I wish I could prescribe a pill that would help your situation,” he said. And I knew he understood.

This happy fellow on an Amsterdam windowsill made me laugh. (2007)

Header photo: Daffy-down-dillies in spring.

2016 National Society of Newspaper Columnists’ contest finalist.

Dementia isn't funny.

Caregiver Judith Clarke looks for laughs every day.

Author Archives: judithclarkewrites

No such thing as too much chocolate.

Bragging, right?

Dementia moment.

The right eye had it.

Hello! My name is…

Call a spade a spade.

Don’t kick the buckets, fill ’em!

Fresh fish get slapped.

A haircut doesn’t hurt.

Who’s the granddad?