Tag Archives: Remind

‘Caregiver’ redefined?

Posted on by under Caregiver, Cleanliness, Dementia, Help sought

The word “caregiver” in the tagline above bothers me because it really isn’t accurate any more. But the title, Dementia isn’t funny, still works because dementia isn’t funny. Not in the least.

The thing is, I’m no longer my husband’s caregiver per se. For the past 18 months, since he moved to a memory facility, there’ve been are nurses and aides, companions and activities personnel doing what I did at home for years. A care giver I’m not, but I do still care.

I’m no longer in charge of trying to get him to take his meds or take a shower, to change his socks, or brush his teeth. No longer do I drag him to get his hair cut, his beard trimmed, no more do I do his laundry. Still, when I visit I often try to get him to put his clothes away properly rather than stuffed in his shoes or under his pillow. To convince him to change into a clean shirt is almost  impossible. He’ll answer “Yes, dear” and continue to ignore me as he always has. I always laugh because I never could change his ingrained stubbornness and I certainly can’t now! On the other hand, the things he likes to do, sweeping for instance, he’ll do willingly, thoroughly. He leaves no leaves unswept, no blade of newly mowed grass on the pavement.

One afternoon we were sitting in the gazebo when, out of the blue, Peter said it needed a coat of paint. I agreed—that gazebo is very shabby looking. I suggested a blue ceiling, a tradition in the South said to scare “haints” away and possibly even mosquitos and wasps too. I decided to find out if painting was even possible. And it is!

The following Sunday we looked at color chips at Lowe’s and picked some blues— Playful Pool and Vintage Aqua were nice. Later I found the color at left on-line: Benjamin Moore’s Ohio Haint Blue. I favor that because, well, I grew up in Ohio. Both sets of grandparents had blue porch ceilings and none of them had ever been further south than Columbus.

The gazebo hasn’t been painted yet, but I’m confident it will be. In fact, I have it on good authority that the ceilings of the porches will also be painted “haint” blue. I’m lobbying to have the garden benches painted a matching color, and maybe find floral chair cushions shades of blue for the porch furniture.

Meanwhile, I haven’t thought of a new word to replace “caregiver” in the tagline. Peter would probably suggest “the wife”: The wife, Judith Clarke, looks for laughs every day.  He’d laugh himself silly at his joke, knowing I would not!

Haint (haunt) ain’t in my dictionary, but hain’t is.
The latter, a contraction of ain’t and have not. 

Header photo: Peter loves to sweep the porch near his room. Soon there will  be a haint blue ceiling above his head.

 

 

 

2016 National Society of Newspaper Columnists’ contest finalist. 

Today was the day.

Posted on by under Be mine, Family, Remember

He knew he knew me but still, he didn’t really know who I was. He couldn’t say my name. He couldn’t say what our relationship was. I wasn’t as shocked as I expected to be when it actually happened. I knew the day would come sooner or later.

Today was sooner rather than later.

Peter hasn’t been able to say our family’s names for some time — Carolynn, Leslie, Samantha, Jeremiah, Martin, Bill — though he recognizes them when he sees them or gazes, as he often does, at their pictures.“How are things in England these days?” he asked. Uh oh, I thought.

What I should have done is explain some little thing about the Brexit crisis. He wouldn’t have understood, but he would have listened, interested. But I said, “I don’t live in England, Peter. I’ve never lived in England.” His eyebrows shot up, and he shook his head as if to clear the cobwebs. His thoughts looped as he asked over and over how things were in England. Finally, leaning close, I asked, “Do you know who I am?”

He bluffed. “Course I do. I could never forget you!”

“Mm-m, do you know my name, what we are to each other?”

He gazed into the distance as if the answers might be written in the mist outside. I said his first wife’s name and asked if he thought I was her. He shook his head, but he did ask where she was. I said I only knew she’d moved back to England years ago. “The two of you came here, to Virginia, in 1968,”  I said.

“Well where were you then?”

“In Arizona, getting ready to move to Virginia.” He shook his head again. I was sure he knew he knew me, but he couldn’t say my name. I turned it into a game. “Am I your sister? Your niece? Your grannie? Your mum?” He laughed at my silliness and said no to each question. Then, inspired, I said, “Peter and…J-o-o-o-o-o…?”

He grinned. “JUDY!” His exaggerated wink tried to tell me he knew my name all along.

He hugged me tight and we laughed together.

[The “today” in this post is actually yesterday. I wrote this late last night, but refined it today. Changing all the todays to yesterdays only works in the song.]

Header: Scene outside my window today.

New broom sweeps even better.

Posted on by under Chores, Helpful hints, Seasons, Task

Peter clears the litter from the porch.

A nurse sat at the end of the hall when I approached my husband’s room yesterday. “Peter’s outside,” she said as she walked toward me. “He’s had a bad morning…very out of sorts….”

I held up the new broom I’d brought. “He was so thrilled to be able to sweep up grass the other day,” I said, “but he complained he needed a bigger broom. This ought to do it.” She nodded her head and said he’d told everyone that he got to sweep.

She added that she’d just given him his morning beer. I suggested tactfully that a cup of tea usually works better when he’s upset. “Beer with his lunch would be a better idea,” I said. She went off to change the orders—PBR with lunch, Guinness after dinner.

Outside, I saw him at the far end of the garden. When I yelled his name he looked up and laughed. “What are you doing here?” he asked, trotting in my direction. I brandished the new broom. “What’s that?” he  asked.

“You said you needed a bigger broom.” He grinned as if it were the best present ever. “This space really needs to be swept,” I said, as I nudged him toward the porch where we often sit.

Well, that’s all it took! He went right to work sweeping leaves and twigs off the cement and even whisking the seat cushions clean. He also managed to polish off his beer and the coffee I’d brought, before he tracked along the sidewalk with that bright red broom. He was in a much happier mood when I left for my dentist appointment, and so was I.

Cushions get a brush off too.
He’s happiest when he’s useful.
I love bittersweet except as it applies to our lives.

This morning I learned that Peter’s down mood had returned in the afternoon. Again he asked over and over why he was there? When I got home from the dentist, probably about the same time he had the second meltdown, I looked around at the mess “Florence” had made and wondered how I’d cope on my own without my champion sweeper and all that autumn brings. But my thoughts are selfish compared to those my husband is trying to sort out in his fractured mind.

 

Header: Bittersweet is lush this year.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

He’s still my cup of tea.

Posted on by under Alzheimer's, Caregiver, Control, Scream
The Cambridge English Dictionary definition of kettle reads: kettle, noun, a container for boiling water, that has a lid, handle, and spout and is made from plastic or metal. put the kettle on. to start to boil water in a kettleIt had happened twice before and was only a matter of time before it happened again. Since his life-changing crash last month Peter has seldom made tea without my supervision. Monday evening I watched him, hawk-like, from the family room as he made tea without me hovering. I saw him fill the kettle, put a tea bag into his cup, and set it beneath the heat lamp above our stove. He stood in front of the stove longer…than…I…“STOP. DON’T DO THAT!” I yelled. Peter had turned the gas on and set the electric kettle on the flame. By the time I got there, the kettle’s plastic bottom had melted. It resembled a reentry module from a space shuttle. He’d managed to turn the gas off, but didn’t really understand what had happened.
“This is an electric kettle,” I said, more frantically than I should have. “You ‘fried’ it,” I added, attempting a feeble joke.
“It’s fine,” he said, “still works.” I shook my head, showed him the damage and dumped the kettle into the trash.

“No tea tonight,” I said, guiding him back toward his chair.

Ten minutes later he got up and asked if I wanted a cup of tea. I reminded him the kettle was toast but he didn’t understand that little joke either. “Burned up…like burned toast,” I said.

Yesterday I shopped for a another kettle. I thought about an old-fashioned stovetop one, but bought another just like the electric one we’d had.  Then I second- guessed myself and continued shopping, this time for a regular kettle like the one he’d grown up with.

Later, after showing him the new kettle that whistled like his ol’ granny’s did, I urged him make a cuppa. When he held the kettle over the cup to pour, he forgot to pull the whistle cover back. Most of the water went onto the stove and counter top. He tried again, with similar results but with me beside him to prompt.

Then, before bed I went to prepare the coffee maker for this morning. A smell? SMELL…OMG GAS!  I hadn’t supervised his last cup of tea and although he’d turned the knob to the left as he should, he hadn’t turned it all the way to “off.”  Gas hissed, though I couldn’t hear it in the other room, and I didn’t smell it until I was in the kitchen. I think Nobby knew something was wrong. He’d been nudging us for some time as he often does in the evenings. I think he was trying to warn us that we needed to get up and fix it.

When I explained to Peter what had happened, I tried to make light of it. “Good thing we aren’t smokers!” I said. He didn’t get that either, but he was quite pale. Then I remembered what I never would’ve thought my husband  would remember. His granddad Alf, then in his mid-nineties, had started having trouble making his tea. The final shot that forced Peter’s dad, John, into finding a nursing home for Alf was when he found the kettle on the gas hob, flames shooting to the ceiling. A pot holder had caught fire. John, widowed, had Parkinson’s Disease and needed help himself. He could no longer look after his father.

The electric kettle I bought yesterday went into service today, as have cookie sheet barriers across the top of my range.

The English are known for offering calming cups of tea in crises, but last evening, when we really needed a cuppa, I’d already hidden the stovetop kettle and was too shaken up to find the electric one that I’d stashed somewhere. It seeing action today though.

Header photo: the melted bottom of our electric kettle.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Love and loneliness sit together.

Posted on by under Alzheimer's, Caregiver, Childlike, Laughs lost, Lost

Maybe I shouldn’t have been so quick to write a post about Peter’s acceptance of his new wrist-hugging PAL. Less than two weeks after I introduced him, he rebelled:
He tries to take the “watch”off, by pulling, tugging, fiddling with the locked clasp. (I have the unlocking device.)
He purposely ignores and/or forgets — a bit of both, I think — the time I ask him to to return.
He gets mad when I pick him up after tracking him, way out of range, an hour later.
When I put a note on his watch to remind when to be home, he stuffs it in his pocket and forgets about it. As he would, of course.
He always insists he knows where he is when he’s out walking, but when I ask where, he says, “I don’t  know, but I know.” I actually understand what I think he’s trying to say.
When I pick him up after he and Nobby have been gone way too long, he doesn’t recognize me or my car. When I beckon to him, he waves politely, and keeps walking. Nobby knows and he’s tired. He drags Peter to the car.
Because my paper note didn’t work, I try to write on his hand. Angrily, belligerently, he jerks away. “The only option,” I say, “is that I walk with you.” I set the alarm on my phone for fifteen minutes and walk along. Though he’d insisted he would be back, when my alarm beeps, he says I didn’t tell him he was supposed to be home at a certain time.
“I will not be told when and where I can walk,” he says repeatedly. “You don’t tell me what I can and cannot do.” I try to make him understand that I want to make sure he’s safe. “We’ll see about that,” he mutters, stomping like a child.

Ah, I don’t blame him for any of it. He can’t help it, I know that. I’d hate it too. Everything, everything, about dementia — Alzheimer’s — sucks! I’d be way worse if I were in his shoes.

To anyone who has ever known my husband, these words don’t describe the lovable, affable Peter of their acquaintance, the man they worked with, laughed with, caroused with.

He isn’t the lovable, affable Peter any longer. He knows it. I know it. He hates it, I hate it. At least I still see brief glimpses, some sparkles and shy smiles of the man I fell in love with.

I created a piece that is a tribute to life and society. Love and loneliness are a part of society and The Lovers’ Bench combines them both. At one point or another in our lives, we all sit on this bench,” artist Lea Vivot says of the entranced couple and the lonely woman beside them.
Header: Lea Vivot’s “The Lover’s Bench,” Montreal’s Botannical Gardens, 2009.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Caregiver’s worst nightmare.

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

Five weeks have passed since Peter went for a walk without Nobby, without my knowing, and without realizing he was on his way to lost.

Five weeks that I’ve been on alert setting door alarms, walking with him when he takes the dog out, researching a tracking device he would tolerate.

Hounding, watching, nattering.

Five weeks trying to make him understand that he can no longer walk out with or without the dog. Five weeks of him slamming doors and stomping to the basement. No, he doesn’t want to be “locked in,” tracked, or told what to do. Who would?

Other caregivers have a much worse go than I do. Others aren’t as fortunate to have outside help and helpful daughters, plus the wherewithal to cover expenses. But that doesn’t stop me fuming over our situation, or trying to make things right when they can go so wrong, so quickly, with no warning.

My caregiving ways reflect my general “fly in the face of convention” attitude. I’ve never done things the easy way. “My way or no way,” Peter would say say. Oh, I do read articles, blogs, and books about dementia and I’ve learned. I’ve listened to advice from the doctor, our daughters, and friends, and I’ve acted upon much of it.

But, I do ignore some of the basic no-no’s for dementia caregivers including don’t argue, don’t ask if they remember this or that, and don’t point out that they’ve forgotten again.

Peter is “luckier” than many. Although his dementia is markedly worse than just a few months ago, he does understand what is happening to him, not because I’ve used the dreaded A-word, but because he just seems to “get it.” He’s an engineer, a problem-solver, who still has a determined stick-to-it-iveness that helps. I’m sure of it.

So, I do point out things that are arguable, I do ask if he remembers then tell him a story about the memory I’ve mentioned, and he does laugh with me and the family when we point out, jokingly, that he’s forgotten something.

Wrong? Perhaps, but for us, for him, it seems to work, seems to keep him in the moment, the now, however fleetingly.

A few days after his long walk, I drove him from our house along the route I think he took to end up five miles away. He was amazed. “Why’d I do that,” he kept asking. “How did I get there?” I did it to impress upon him, as much as possible, that his “escape” was daring and scary, for him and for all of us who searched.

Ignoring the wisdom, until a month ago I did let him walk the dog on his own, and I looked for tracking options only for future reference. Even having experienced that worst nightmare, I think I’d do the same again. He had his freedom as long as possible and now it isn’t possible anymore.

Would I recommend my approach to others? I would not. Every situation is different and what works for one likely wouldn’t work for another.

Oh, yes, it could have been a lot worse. The ending could have been tragic, but it wasn’t. Peter’s still here to growl at me every time I say he must wait to walk until I put my shoes on. He still has to listen while I explain why it’s necessary.

And he’s still here to make me laugh.

Header: Rainstorm over Alaskan waters, 9/7/06

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Nobby didn’t do it!

Posted on by under Alzheimer's, Gardens, Laughter, Nag

Peter went with me to get my springtime supply of potting soil. I had to ask a Lowe’s employee to help us get it off the stack and onto a flat cart. Together, we managed to heft it into the car ourselves, but at home Peter insisted he wrestle the monster bag to the backyard himself.

Then, Friday, with only a few more plants to pot, I set myself up under the maple tree with trowel, pots, scoop and…where the heck was the potting soil? I looked in the gardening cupboard, the shed, the basement. Arrgh-h, was it that bag that made the garbage bin so heavy that morning? It had been very difficult to roll to the street and Peter was concerned the weight would be too much for the lifting mechanism on the truck.

“Do you know where the potting soil is?” I asked Peter, knowing he wouldn’t know what I was talking about.

“Potting soil? What’s that?”

“Big green bag, heavy, you lugged it around back for me couple weeks ago. Come help me, I’m probably looking right at it and can’t see it.”

We went to the shed and looked under and behind things. Nope. Storage cupboard? Nope. Basement? Nope. “If it was as heavy as you say I don’t think I could’ve carried it down here,” he said.

I groaned, sure it had been put into the blue bin that had already been collected. Peter often sneaks things into the garbage. We really couldn’t blame that, even jokingly, on Nobby.

I plonked down on the terrace steps, frustrated. In order to finish, I’d have to go get another bag of the stuff. But oh, wait, something bright green beside the steps caught my eye. OH!

“Peter, I found it,” I yelled. I pointed to the bag leaning against the wall. I’d practically stepped on it when I began my search.

He laughed. He hooted. His face turned red.

“I’m sorry! It’s my fault, not yours!” I said, laughing almost as much as he was.

Leslie arrived just then. What’s going on, she wanted to know.  Peter, still laughing, pointed to the very big, very green bag. “Mum tried to blame me…said I threw that away…I can’t even lift it….”

She laughed too, as only she can. Later, she suggested the episode was a post waiting to be written. I, like Peter, always do what Leslie says.

At least Nobby didn’t get the blame.


Header: Peter weeds the herb garden.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

‘A good time to laugh is any time there is.’

Posted on by under Alzheimer's, Dementia, Family, Remember

“Any news from upstate?” Peter asks. It’s dinnertime and that’s the question he repeats over and over during our meals.

“No,” I say.

We listen to the evening news while we eat, me grumbling at the goings-on in Washington, Peter listening carefully to the weather report.

“Any news from upstate?” he asks again.

I start to shake my head, but instead, decide to try a different response. “No,” I tell him, “but Leslie and Martin spent the weekend at the river.”

“Really? In this…?” he asks. He nods his head towards the fog outside, the rain-streaked window. “What did they do?”

I laugh. “We were there, too,” I say. I’d hoped he might remember the two days, the cozy fires, the good food, log-wrangling with Martin, Leslie and me laughing hysterically over nothing at all.

He shakes his head disgustedly, but recovers with his usual line, “Oh, well, that was a long time ago. I can’t even remember what I had for breakfast.”

I nod, laugh, frown.

Laughter in the face of reality is one of the finest sounds there is. In fact, a good time to laugh is any time there is.”  Linda Ellerbee

Header photo: Foggy weekend at the river.

Puzzling.

Posted on by under Alzheimer's, Defined, Dementia, Laughter

A lot of puzzling memory and behavior problems cluster under the dementia umbrella. So far, science knows too little about most of the variations and nothing that can cure any of them.

img_4436On a day-to-day living-with-it level, my husband’s memory issues are baffling to both of us. He’s always liked to do crosswords, and still brags about the time 50 years ago when he won the London Times Sunday crossword challenge. He does the daily crosswords still, but I’m not sure how well. He enjoys jigsaws too, and recently resurrected a 3D castle puzzle.

So I got out several Christmas puzzles we’ve worked many times over the years. Among them, a tiny one depicting a mouse dressed as Santa. I sorted the edge pieces from the rest. and laid out the one small section that was still stuck together. The whole thing is quite small. He got into it quickly. Ten minutes later I went back to see how he was doing. There were a lot more white background pieces than before.

img_4440“Where did these come from?” I asked. He shrugged his shoulders and muttered something about “needing more.” I picked up a piece that had green pine needles as part of the design. “Oh, these don’t go with this puzzle,” I said, “they go with this one.” I showed him the larger puzzle I’d set aside. It pictures wild birds on a feeder that hangs from a pine bough. It was partially put together in the box.

img_4437Peter doubled over laughing at himself. “Well, when I couldn’t find the pieces I needed, I thought they might be in that box,” he explained. He realized how silly that sounded.

“We’ll do that one separately,” I said. “Finish this little one first.”

“There aren’t enough pieces,” he said, grabbing for the bigger box again. He’d instantly forgotten we’d had that conversation, that he’d laughed at himself.

As often happens, I tried to make sense of how he can work on an intricate 3-D 620-piece jigsaw one minute and the next try to fit a 500-piece 12″ x 36″ puzzle into a 100-piece 7.5″ square frame.

img_4447

Header: Tiny puzzle puzzles.

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Apples and pears…stairs.

Posted on by under Alzheimer's, Caregiver, Laughter, tears, Remember, Thankful

Peter looked at the lunch I was fixing for myself, my usual apple, chunk of Cheddar cheese, glass of milk. “Where did you get the apple?” he asked.

I pointed to the old wooden bowl that has always occupied our kitchen, that is always filled with fruit, and the occasional veg.

“Oh, I didn’t know that was there.” He picked out a piece of fruit, came back to the sink and turned on the water.

“That’s a pear,” I said as he washed it off.

Instantly, he collapsed laughing, his face as red as the apple’s cheeks, eyes twinkling. He hugged me. “I know it’s a pear, silly. I’m not that far gone.” I laughed with him and savored the hug.

That far gone, no, but he is more and more confused by the day, less and less able to find words or remember the simplest things. Still, I was grateful for the moment, the laugh, and the hug!

img_4300

Fruit with acorn squash.

Header photo: What a pair, pear.

2016 National Society of Newspaper Columnists’ contest finalist.