Category Archives: Alzheimer’s

Perfect do-nothing day.

Posted on by 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.”

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UnknownA 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.

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Mickey Mouse webgrab/Pinterest

Header photo: Crayola box colors in the garden.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

There’s always something worse.

Posted on by under Alzheimer's, Favorites, Laughter, tears

Peter asked his usual question, “What do I order here?” I gave my usual answer, “Beef.” We were at Lefty’s, a favorite restaurant, and we were hungry. I wasted no time ordering steak au poivre for him, Asian chicken salad for me.

He gazed out the big windows. “Looks like afternoon,” he said. “The sky is so blue.” Cloudless skies delight him.

“Technically, it is afternoon,” I said. “It’s not even five-thirty.”

“I never know what time it is anymore.” He looked at his watch. “Looks like daytime,” he said.

“It is daytime,” I said.

He followed the script engraved on his brain. “Any news from ‘upstate,’ or have I already asked?”

“Well, yes, you have, and, no, no news.”

“Any good movies on?” He realized that was another routine question and he smiled when I shook my head.

He looked at me, eyes questioning, mouth downturned. “What’s wrong?” I asked.

“Oh, just thinking how I am now and how I used to be. I can’t even talk anymore.”

“You never talked,” I reminded him, “and besides, you’re doing OK, a lot better than some. There are worse things.”

“Worse for you maybe,” he said, with a teasing smile, “but not for me.” For some reason, that made us laugh and his downcast moment was erased. Forgotten.

When our meal arrived, he reached for the salt and pepper. As always, he salted and peppered liberally without first tasting his food. One of my pet peeves.

“You are peppering your steak au poivre,” I said.

He shrugged. “So?”

“It is pepper steak,” I said.

He laughed, I sneezed, we laughed together.


Unknown

Header photo: Willow glows at dawn.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

He doesn’t know what he doesn’t know.

Posted on by under Alzheimer's, Numbers count

Did anyone hear me yelling a few days ago? I yelled out of frustration with myself as much as with my husband…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.”

After stewing about the problem for days, I finally got smart and photographed the television screen with its various error messages. Then I gathered up the remotes and my smart phone and went to the shop where we bought the tv. I explained how the remote got bungled and asked if there was such a thing as a remote with on/off and channel/volume choices only? I laughed, but I wasn’t kidding.

The owner wasn’t kidding either when he suggested he might be able to disable the two problem buttons so they wouldn’t function at all.

“Go for it,” I said. Five minutes later he was done. I giggled when he told me he’d taped over the tiny printed circuit boards. “My husband was an electrical engineer for forty years,” I said. “At one time, problem-solving, printed circuit boards and codes were his expertise.” I put my sunglasses on quickly to hide the tears that flooded my eyes at the irony.

That evening, even with television viewing possible again, I suggested we go to a movie. “‘The Man Who Knew Infinity’ is playing,” I said. “Remember, we saw the previews…about a math genius. You thought it looked interesting.”

Peter nodded. “I do remember. Yes. Let’s go.” He was as surprised as I was that he remembered, but he’s always been numbers man. He can still count backwards by sevens from one hundred easily, a skill that is rated on Alzheimer’s assessments.

The movie was absolutely engrossing. One review gave it two stars, but I gave it five on a four-star scale. I peeked at Peter throughout. He never once nodded off. Every so often I asked if he understood what they were talking about because I certainly didn’t. He did.

On the way home, I asked again if he really understood all the terms — partitions, proofs, integers, numbers theory — gobbledygook to me. He laughed. “Course I did,” he said, “but that was way before my time.”

The brilliant minds of Srinivasa Ramanujan and G.H. Hardy (Dev Patel and Jeremy Irons) are beyond my ken, but I appreciate their story. I cried at the end. I almost never cry at movies.

The five partitions of the number four
1+1+1+1  |   1+1+2   |   1+3   |   2+2  |  4

Header photo: Outsmart the smart tv.

2016 National Society of Newspaper Columnists’ contest finalist. 

The little things are getting bigger.

Posted on by 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.

IMG_3266I 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.

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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 by 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.

Screen Shot 2016-05-14 at 2.39.47 PMI 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?

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

Header: Shapeways edible chocolate shoe

2016 National Society of Newspaper Columnists’ contest finalist. 

Dementia moment.

Posted on by 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.

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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. 

Call a spade a spade.

Posted on by 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.”

TTWK Cover

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.

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The things we keep, Sally Hepworth, pp. 21, St. Martin’s Press ©2015

Header photo: Violas overrun my flower beds.

2016 National Society of Newspaper Columnists’ contest finalist. 

Don’t kick the buckets, fill ’em!

Posted on by 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, Screen Shot 2016-03-30 at 10.13.32 AMbooks 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. 

What lurks in the shadows of his mind, cont.

Posted on by 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. 

What lurks in the shadows of his mind?

Posted on by under Alzheimer's, Laughter, tears

He sat across from me. The restaurant was very crowded, very noisy. Talking wasn’t possible, not really. But Peter kept trying to converse. I reminded him we seldom talk across our own dinner table, so it doesn’t matter if we don’t talk when we’re out.

“But, it’s different,” he said, “when we’re somewhere else.”

“I can’t hear a word you’re saying anyway,” I reminded him.

He nodded and sat back. He studied a spot on the wall behind my head. I watched his face. The V-shaped creases between his brows deepened, his left eye twitched, he shook his head slightly. He was far away.

“What are you thinking about?” I asked.

He shook his head again. “I’m trying to remember what it was like when I first came here.”

“To America?”

“Yes. Things have changed, but I can’t remember…”

“But that was in 1968! Nearly fifty years ago.”

He nodded.

“I’m going to have to learn to read your mind,” I said.

His eyes brightened. He smiled. “Well, if you do, tell me what you find in there.”

His remark was so apt we broke into laughter. The people at the next table must have wondered what was so funny. If they only knew.

Header photo: Peter, tube station near V&A Museum, London, 2009

2016 National Society of Newspaper Columnists’ contest finalist.