Perfect do-nothing day.

Posted on June 19, 2016 by judithclarkewrites under Alzheimer's, Caregiver, Childlike, Family

“Do you want tea or coffee for ‘second breakfast’?” I asked my husband. “I’m fixing waffles.”

“What? Tea or coffee? What are you having? What are we having?”

“I’m having tea, we’re having waffles…and fruit, lots of fruit,” I told him.

“OK, tea then. What’s the occasion?” Peter asked.

“It’s Father’s Day.”

“You’re making me waffles?”

“Mmm-m,” I said, “it’s Father’s Day.”

“What can I do to help?”

“Nothing. It’s Father’s Day, do nothing until I tell you it’s ready.”

“I’m good at doing nothing,” he said.

“Yes, you are,” I said.

This day is perfect — a Crayola box of colors, balmy air, bright sun. I set the table outside, made a pot of tea, washed raspberries, blueberries and a peach, got out real butter and real maple syrup, and popped a whole package of frozen waffles into the toaster.

Peter ate as if he hadn’t had a meal in days. “I would like to have two birthdays every year…” he said, smacking his lips.

“This isn’t your birthday, it’s Father’s Day.”

“Not February? What is it then?

“June. It’s never warm like this in February,” I said.

“Well, I’d like two birthdays like this. This is good.”

“It’s still Father’s Day.”

“Are we doing anything special later?” He made a silly, little boy face.

“Yes, Leslie is taking you…and me…to a movie and dinner.”

“Wow, I’d like another birthday like this.”

A card arrived from Carolynn yesterday. On the front, the unmistakeable silhouette of Mickey Mouse, Peter’s hero, and a “Hooray for Dad” message. He looked at it again and again, then put it next to his chair. When I looked at it this morning, I realized why he’s confused about today. The message says:

As far as dads go,
there’s not a more classic
character than you.
Hope your birthday’s
as special as you are.

Beneath that she wrote, I know you can’t remember all the cool things you did with Leslie and me…but we do! Happy Father’s Day!

Birthday? Father’s Day? Doesn’t matter. He’s loved by “his girls” and he’s happy.

Mickey Mouse webgrab/Pinterest

Header photo: Crayola box colors in the garden.

2016 National Society of Newspaper Columnists’ contest finalist.

The little things are getting bigger.

Posted on June 2, 2016 by judithclarkewrites under Alzheimer's, Caregiver, Helpful hints, Problems

It’s him asking over and over “why they’re digging up our driveway?” It’s not understanding that the plumber’s crew aren’t “looking for” anything. They’re replacing our sewer line, collapsed and choked by roots, after 60 years.

It’s knowing that telling him something will make no impression, as if I never said anything at all. It’s knowing that he won’t even see my note, underlined in red, that I’ve left to remind him of an event, a date, a task.

It’s putting a shovel in the ground exactly where I want a hole dug for the azalea that was yanked out last week, knowing the shovel will be put away before the task is even started. It’s knowing he’ll ask why the azalea, jammed in a big flower pot, was sitting next to the shovel.

It’s me YELLING because once again he managed to confuse our so-called “smart” tv by pushing the wrong buttons on the remote. I’m not smart enough to know what’s wrong, so I can’t fix it.

I thought I’d come up with a brilliant way to avoid telling him things he’d forget, or writing notes he wouldn’t understand: I suggested he write a note to himself about how to turn the tv on and off, for example. He liked that and labored over the words. His own message worked for 24 hours. We’re lost without the tv, Peter because he watches anything, anytime, and me because he’s content and calm when it’s on.

It’s me begging him not to move the plumber’s drainpipe extension because it helps direct rainwater away from our not-yet-resurfaced driveway. I growl when I see that he’s moved it to where he wants it again. I had him insert metal garden stakes along the pipe to hold it where it’s supposed to rest, thus reminding him that it shouldn’t be moved. Worked so far.

It’s me, arguing when he said he did not fill in the hole he’d just dug or “plant” the weeds I’d just pulled. I know better than to argue.

Yes, I look for laughs every day, but days like this, there aren’t any.

This is where the azalea once lived.

Header photo: The big dig.

2016 National Society of Newspaper Columnists’ contest finalist.

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.

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.

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.

His sneezes, like his questions, are repetitive.

Posted on February 24, 2016 by judithclarkewrites under Caregiver, Dementia, Remember, Sickness & Health

Hiccups every few minutes for several days predict a bad head cold for my husband. Sure enough, a weekend of hiccups were followed on Monday by a cacophonous, multi-sneeze cold. I started force-feeding orange juice, more cups of tea than are usual for him, and a potion a friend recommended.

Every time I approached, spoon in hand, Peter said, “What’s that for?”

“Your cold,” I answered again and again.

“Do I have a cold?” he croaked between sneezes.

“Yes,” I said, over and over. “Mmm-m.”

Tuesday, when I asked if he felt well enough to go on the usual Nobby-the-therapy-dog visit to the adult day care facility, he asked if he’d been sick. Then he sneezed and sneezed and sneezed. I cancelled.

Same again this morning. A nursing home visit was scheduled for Nobby. “How do you feel?” I asked. Peter patted himself all over and said, as he always does, “I feel fine.” He sounded worse than Louis Armstrong on a good day. I cancelled the visit.

There are so many horrible diseases humans contend with, but often it’s the common cold that makes us the grumpiest. Dementia is a bit like Kleenex – it wipes away the last sniffle, the dripping nose, the streaming eyes. The cold is still contagious, but dementia in all its guises, is not — and that’s a good thing.

My husband isn’t grumpy when he has a cold, he’s sneezy. But when I catch his colds, lookout, I’m grumpy.

Header photo: A sneeze magnified.

2016 National Society of Newspaper Columnists’ contest finalist.

What can I do?

Posted on February 19, 2016 by judithclarkewrites under Caregiver, Problems, Scream, Thankful

My brain had short circuited. I clutched my head and tried to figure out which problem to tackle next. Just then, Peter peeked around the door. “Can I do anything to help?” he asked.

My pitiful smile didn’t reach my eyes. “Could you give me some peace of mind?” I asked. “That would help.”

He chuckled. “You want a piece of my mind?” he said.

The tears that had threatened dried up. Just that brief exchange lightened my mood.

Photos: Sailing to Alaska (2006)

2016 National Society of Newspaper Columnists’ contest finalist.

Dementia isn't funny.

Caregiver Judith Clarke looks for laughs every day.

Category Archives: Caregiver

Perfect do-nothing day.

The little things are getting bigger.

No such thing as too much chocolate.

Bragging, right?

Dementia moment.

The right eye had it.

Don’t kick the buckets, fill ’em!

Who’s the granddad?

His sneezes, like his questions, are repetitive.

What can I do?