Keep on the sunny side of life.

For years and years, long before dementia took control of our lives, if I asked Peter to take the garbage images-3out 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.

images-2Before 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 IMG_0461with 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.

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Header photo: Eggs over easy

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

What lurks in the shadows of his mind, cont.

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?

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. 

 

‘Laughing all the way…’

“You’ve made my tea!” Peter had just come back from walking Nobby. He was surprised because I don’t usually make his multiple morning cups of tea.

“Yes, Leslie is coming by to pick you up in twenty minutes. She’s taking you shopping.”

“Why? Do I need to go shopping?”

“You don’t need to, but you always like to look,” I said. “You don’t have to buy anything.”

He grinned. “Oh, I get it. You put her up to this, didn’t you?”

“Nope. She just called and said she was taking you out. It’ll be fun.”

“Well, I love ya’ anyway, don’t I?” he said as he came towards me, arms outstretched for a hug.

I stalled him by pulling his jacket open to check if his shirt was clean. “Oh, you look good!” I said, surprised.

Without so much as a pause, he yanked my hoodie open, gave me his lecherous glance, and said, “You do too, Darlin’!”

I doubled over with laughter. He hasn’t forgotten how to lay it on. With his hug I handed him a generous supply of cash. Just in case he, you know, wanted to buy anything for anyone…for Christmas.


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Header photo: Collection of my mother’s christmas cards.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

It’s the little things.

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. 

 

 

‘Blue skies, smilin’ at me, nothin’ but blue skies do I see…’

If only the lyrics from Irving Berlin’s “Blue skies” were true at our house. Phrases and actions cause repeats — I call them rePetes — in Peter’s brain. Picking up tiny sticks in the yard and endless sweeping on our brick terrace are two of them.

Lately, with November’s crisp weather bringing brilliant skies, Peter has become enamored of the beautiful blue. “Not a cloud in the sky,” he says over and over. “I’ve never seen such a blue sky.”
“Yes, it’s a beautiful day,” I agree.
“Look at that. There’s not a cloud in the sky. Have you ever seen such a blue sky?”
“Mm-mmm.”

I guess there are worse things to be stuck on than the beauty above us.

“Blue days, all of them gone,
Nothin’ but blue skies from now on

Bluebirds singin’ a song
Nothin’ but bluebirds all day long…”
Ah, if only.

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While trying to find the perfect blue sky photo to use above, I came across this lovely little poem and accompanying picture. Thus inspired I thought, why not go outside and take a photo of our “I’ve-never-seen-such-a-blue-sky” sky? So I did, and laughed at myself for taking so long to think of it.

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a bluebird’s wing
by Kathleen Everett
Gray morning fog lifts
revealing the November sky
cloudless
clear
color of a bluebird’s wing
an autumn aster
your eyes

 

 

Header photo: “Not a cloud in the sky” taken by me, 11/14/15.
“Blue Skies” lyrics, Irving Berlin
“a bluebird’s wing” Kathleen Everett, The Course of Our Seasons ©2011-2015
Feather ©Rakkla

2016 National Society of Newspaper Columnists’ contest finalist. 

Rock and a hard place.

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.

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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.

“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. 

Attention span of a goldfish.

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Ten symptoms of caregiver stress were listed in an Alzheimer’s Association newsletter with this caveat: Alzheimer’s caregivers frequently experience high levels of stress. It can be overwhelming to take care of a loved one with Alzheimer’s or other dementia, but too much stress can be harmful to both of you.

 No kidding!

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In any given day I deal with several of these, and I’m sure other caregivers do the same:

  1. Denial – Early on, I was convinced that if I kept trying to force Peter to remember things, to eat right, to get out more he’d at least maintain his status quo.
  2. Anger – Screams, like geysers ready to erupt, lurk just below the surface of my “looking for laughs” demeanor. 
  3. Social withdrawal – Sometimes it takes too much effort do anything at all, much less be sociable.
  4. Anxiety – I’ve finally done what I should have done sooner: hired more help for Peter and for me. What a difference to have the house cleaned and tidied by a young lady who is energy personified, the garden maintained by a woman who knows first-hand what it’s like to be a caregiver, niggling tasks done by a handyman friend.
  5. Depression – Big mistake to think that I didn’t need anti-depressants. Hindsight and a meltdown proved me wrong.
  6. Exhaustion – I used to keep my house to a certain standard, not the same white-glove-test standard my mother used, but I kept the dust bunnies at bay, food in the fridge, cookie tin filled, laundry done. When I realized it had been weeks since I’d cleaned the bathroom or changed our sheets, I knew I needed more help. (see #4)
  7. Sleeplessness – Guilt wakes me in the wee hours, especially when I’ve crabbed at him for things he can’t help. Peter’s attention span is worse than a goldfish’s and he’ll ask the silliest things over and over. Within a few seconds he forgets I yelled and when I apologize he doesn’t know why.
  8. Irritability – No one has ever called me patient. Lately Peter has started reorganizing the pantry every few days, lining up jars and moving boxes so I can’t find anything. Most wives would be thrilled if their husbands undertook that task, but I’m an angry bumble bee.
  9. Lack of concentration  – I used to be so organized, so tidy, but no more. My personal spaces are in the same sorry state as my mind.
  10. Health problems – Many times I wonder if his dementia has rubbed off on me. Am I losing control too? Is it stress, or am I destined to be a statistic as well?
    I talked to my doctor. He did the basic tests and I passed. “Stress,” he said, “it’s stress. You’re doing fine, but take time for yourself, do what you can to alleviate stress.”

My mother always said, no matter how bad things may seem, there’s always someone who is worse off than you. I’m glad I’m not a goldfish.

 

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2016 National Society of Newspaper Columnists’ contest finalist.