Lights out.

Over the years since his dementia diagnosis, my husband has invented ways to control anything he can in his increasingly hazy life. I’ve written about his stacks of coins, never-ending twig collecting, his sweeping, folding, smoothing, polishing, wiping.

I. Want. To. Scream! And sometimes I do. Having said that, I’m sure he wants to scream too.

His latest attempt at control is not only baffling, it’s downright dangerous. I discovered it several weeks ago when I went down to the basement, a dungeon I try to avoid. Dark at mid-day, the windows are grimy and any light coming in is grayed.

I flipped the two switches several times. Nothing. I scrabbled around and finally discovered Peter had removed the bulbs from the six overhead fixtures. I don’t know why and I didn’t ask because I’m sure he wouldn’t have known either.

I put new LED bulbs in all the sockets. He took them out. I talked to him about the danger of going down the steps and walking around in the dark.

I put the bulbs in again. He took them out again.

Our basement is not a finished space. Hazards lurk — bicycles, tools, piles of newspapers and magazines, chairs, tables, workbenches. I thought I’d solved the problem with my little chat about dangers in the dark.

Today I realized I hadn’t. The bulbs were gone again. Why did I think he’d remember?

Laughs, I’m looking for laughs, but it’s dark in here. A bigger bulb maybe?

 

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‘What do I want?’

Peter and I spent the morning of June 6 at the Commemoration of the Normandy Invasion at the National D-Day Memorial in Bedford, Virginia. We’ve visited many times in the sixteen years since it opened. We go because we remember D-Day. Well, I do. Peter doesn’t remember much anymore, but I’d hoped the grandeur of the place would spark a memory.

A soft breeze wafted around us as we walked up the alleé and through the immense granite Overlord Arch. Above us, Allied flags flapped in the wind. As we gazed out at the awe-inspiring depiction of a Normandy beach, a soldier fighting to gain the cliff, another sprawled in the sea, Peter said, “We’ve never been here before, have we?”

* * *

After the ceremony we went to Roanoke for lunch. When I drove into Montano’s parking lot, his eyes lit up. “I know where I am now,” he said. We were seated quickly at one of Theresa’s tables. After so many Montano’s lunches, she knows us.

She patted Peter on the shoulder. “You remember, we don’t have Guinness on tap anymore,” she said, apologizing.

He shook his head, and finally settled on another choice. When she returned with his beer, she said, “Ready to order? Too many decisions, I know.”

He looked at me. “What do I want?”

“Fish and chips.”

“Yes, that’s what I want.”

When Theresa brought our food, he asked me about the contents of the three little cups on his plate.

“Tartar sauce. Horseradish sauce. Malt vinegar,” I said, pointing to each. “You use malt vinegar. It goes on the fish and chips.”

He dipped his spoon into the tartar sauce. “Oh, that’s good,” he said. Once upon a time, he wouldn’t even have tasted tartar sauce. “Too sweet,” he would’ve said. He dipped his spoon in again. “I could eat it all.”

He wrinkled his nose at the horseradish sauce, but then, he picked up the container of vinegar, put it to his lips…and…

NO-O! Don’t drink the vinegar!” I yelped. Too late.

He shuddered. His eyes watered. “Bl-l-l-ech! Wasn’t supposed to drink it, was I?”  He laughed and choked at the same time.

I couldn’t help but laugh at the look on his face. “You’re supposed to sprinkle it on the fish and chips.”

He did “sprinkle” the remaining vinegar, but then, to add to my shock, he plastered the fish with tartar sauce. By that point, I guess I wouldn’t have been surprised if he’d licked the container clean.

We’re reflected in the granite Overlord Arch in Bedford.

 

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Header: Monument at front of National D-Day Memorial, Bedford, Virginia

Salt and pepper to taste.

“What do I eat here?” Peter asked over and over. I told him his usual Cuban pork wasn’t on the menu any longer, but he could have fish and chips. He was happy.

When our meals were served, Peter doused his three separate times with enough salt and pepper to fill all the shakers in our house. He has always used way too much of each, but lately, his habit seems even more excessive. Dementia, I’ve learned, can destroy the sense of taste, hence so much salt and pepper. In addition to over-salting, Peter has developed a sweet tooth that could make him a poster boy for the American Dentists’ Association dire warnings about sugar.

After watching salt avalanche off his mountain of fish, I pointed to the malt vinegar. “What is that?” Peter asked. I told him. “What’s it for?” he wanted to know. I raised my left eyebrow. “This is what you’ve always used, not all that salt and pepper,” I said. Malt vinegar on fish and chips is what one does, he told me early on when he introduced me to the English staple!

A sudden seismic change in my husband’s behavior has made the past few weeks troubling. I called it his “new normal” in a recent post. Not recognizing malt vinegar, nor knowing what it was for, was further sign of the change I’d noticed.

When the waiter asked if we were ready for the bill, I surprised both him and Peter. “No. I’d like coconut cake, please, and coffee. Two coffees.”

“Well, I’m having dessert then,” Peter said. The dessert menu was all photographs so it didn’t take him long to zero in on a chocolate cream puff.

Our coffees came first, each with tiny cups of half-and-half. “What are these?” Peter asked.

“Coffee creamer…you stopped using it years ago.”

He pulled a lid off. “Can I drink it?”

“No-o, you’re not five-years-old.”

He grinned and pretended he was going to drink it, then started to pour it into his beer. “Aren’t you going to finish your beer?” I squealed. I could not believe he’d leave a couple swallows of beer, much less pour cream into it. In the end, he put it in his coffee rather than waste it.

When his cream puff came we laughed. It was cantaloupe sized. Even he couldn’t eat it all. I ate every last bite of my coconut cake.

This hint for my husband to fill the S&P shakers didn’t work.

Header photo: Shakers waiting for me to fill them.

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

“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


2016 National Society of Newspaper Columnists’ contest, second place, blog category.

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Remember? November.

Lately, my husband’s downhill run has gotten steeper, faster. When we used to bicycle together, we both preferred climbing hills to zooming down them. The  inherent thrill of a downhill scared both of us. That’s still true, though neither of us bikes anymore, and we don’t really talk about his descent. I can’t imagine how difficult it is for him although he still uses his “braking” mechanism: corny jokes and silly laughs.

We eked out a chuckle the other day. The doorbell rang. As usual Peter wouldn’t answer it though he made sure I’d heard it. A young man stood on the step holding a gorgeous bouquet. A bright beautiful cheery surprise after a trying few weeks.

img_4348Peter was working on the daily sudoku. I walked in holding the flowers. When he looked up his eyes popped, his mouth fell open, and the ruddy color drained from his cheeks. He glanced quickly at the date at the top of the newspaper page. “November,” he said. “That’s not you…is it?”

“Not me what? My birthday? No.”

“Are they for me?”

“No-o,” I laughed, “for me, from Carolynn and Robin. November is ‘Caregivers’ Month,'” I said. He didn’t question that. He doesn’t recognize that I’m his caregiver, and insists he doesn’t need one.

I put the flowers on the kitchen table. At dinner that evening he studied them. “Have those been there all along? You know, for months and months?”

“No, they came this morning.”

“Did I know that.”

I nodded.

Minutes later he asked again, then again, and again.

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2016 National Society of Newspaper Columnists’ contest, second place, blog category.

Another good thing.

Periodically, over several years writing this blog, I’ve posted about the occasional “good things” that are a part of our dementia journey, my husband’s and mine. Another became apparent two days ago.

In addition to being totally flattened by the outcome of the presidential election, I was steamrolled by an intestinal bug. As we sat at the dinner table Friday evening, Peter started making silly faces at me. Apparently I was lost, thinking dark thoughts while waiting for him to finish his pork barbecue and cole slaw. It hadn’t taken me long to eat half a baked potato.

When he finally got my attention he asked, “What’s wrong?”

I’m sure I sighed. “Just thinking about the election,” I said.

He nodded. “What will happen?” he asked.

“I dunno’.” Another sigh.

“Do you think he’ll win?”‘

screen-shot-2016-11-13-at-1-21-34-pmWhat? Wait! Really? Admittedly, my English husband never got his U.S. citizenship, has never voted here, but didn’t he understand the election was over?  He did not. All my ranting and carrying on in recent months, the enormous photo of the president-elect on the front page Wednesday morning, the endless news reports I’d watched, us watching Secretary Clinton’s concession speech together, none of that had soaked in?

But see, that’s a good thing. He doesn’t remember while I wish I couldn’t.

 

The National Society of Newspaper Columnists contest winner, 2016 —
online, blog, & monthly under 100,000 unique visitors category.

 

Apples and pears…stairs.

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!

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Fruit with acorn squash.

The National Society of Newspaper Columnists contest winner, 2016 —
online, blog, & monthly under 100,000 unique visitors category.

Do I know where I am?

Peter was unusually silent. “Something wrong?” I asked. I was driving along a narrow road so could only glance at him.

The silence lengthened. “Do I know where I am?” he said at last.

Whoa, what?  “Do you mean this instant, here, on this road?”

“Yes.”

“Well, we just left Carolynn and Bill…we’re heading home…we’ll soon be in Waterville…” I paused to see if my words rang his bell. “Remember last week, on the way here, we had to stop for a parade in Waterville?”

Nothing.

I thought back to that Saturday. The long drive north had been uneventful until we got to Waterville (pop. 1,548), where we were blocked by a parade longer than the main thoroughfare. Stuck, twenty minutes away from Carolynn’s front door. I fumed, but Peter said, “It’s a pretty day. We’ve got time.”

“But I want to be there, not sitting here.” 

Forty minutes later we were zooming along the downhill drive to — whoops — Road Closed and Detour signs. “OK, I know how to get there from here, I used to bike along this road.” Several miles later I turned left onto another favorite bicycling road. “Do you remember? We used to ride along here a lot.”

Peter sighed. “You seem to know your way around.”

“We lived here seventeen years!”

“You did. I didn’t.”

A right at the next stop sign, then a quick left and we were on their street. “You sure know your way around,” Peter said again.

“We lived here seventeen years!

“I didn’t,” he insisted.

When I turned into their drive, he sat up straight and smiled. “I didn’t know we were coming here!” His eyes sparkled and when Carolynn and their two Westies ran toward us he chuckled. He knew where he was.

I laughed. “I’ve told you for weeks we were coming to see them…”

“I. Didn’t. Know.”

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Bill and Peter in front of a rock-hugging tree.

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Big Guy and/or It.

Throughout our visit, his usual confusion at being away from home eased a bit. After a couple of nights he was able to get from our bedroom to the bathroom and back without going into their room or Carolynn’s office. He didn’t even try to remember Duffy’s or Lily’s names, calling them instead “Big Guy” and/or “It.” He didn’t understand how to use the Wii remote to play golf or bowl with Bill, but he had fun trying. He could still keep track of the dominos played and plan moves accordingly. Bill took him fishing, golfing, and shopping; Carolynn and I took him to the farm stand; I took him to the Polish butcher and past our old house. He remembered the butcher, but had no memory of living in that house. It does look quite different — terrible — minus the two enormous maple trees in front.

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Bill, Lily and Duffy follow Peter around Moss Lake as if he knows the way.

But now, headed south again, Peter had asked if he knew where he was. I reminded him of all the things we’d done, his outings with Bill, our hike in the Adirondacks with the dogs. He shook his head. “Sorry, I just don’t remember.”

But I do. I remember a visit special for the girl-time with Carolynn and her friend Robin, a visit with friend Lisa, time off from caregiving thanks to Bill taking charge, and the laughs. Always the laughs.

I won’t forget.


The National Society of Newspaper Columnists contest winner, 2016 —

online, blog, & monthly under 100,000 unique visitors category.

On canyon’s edge!

Three years ago I published my first post, “We’ve arrived, and to prove it we’re here,” on my new blog, “Wherever you go, there you are.”  A year later, August 6, 2014, I published my first post for this, my second blog.

I often think about how the subject matter of this blog has affected what I intended to write about in “Wherever you go, there you are.” As my husband’s dementia has worsened, traveling anywhere, even to the mall, can be a problem. His wardrobe needs to be replenished but he won’t go willingly to look for new shirts,pants, or shoes. If I try to buy things and take them to him, he won’t wear them. He didn’t even like the socks I bought.

I knew our last big trip in 2011 was our final trip — Peter got lost, at night, at Bryce Canyon, Utah. He wanted to hear a talk in the main lodge, within sight of our room. It was daylight when he left, and would be daylight when he returned. He went by himself.

Dusk fell. He wasn’t back. I raced to the main lodge, panicked because I’d let him, urged him, to go alone. 

When I got to the desk, terrified and gasping, I could hardly speak. The staff jumped to action. Grounds crew sped out in golf carts, while I stayed behind and paced. It wasn’t long before the desk clerk beckoned. Peter had called! My husband, who never uses a phone, had the presence of mind to go into a dorm, knock on someone’s door and ask to use their phone.

“Stay right there, we’re coming,” I said. I hopped in with a groundskeeper and we rocketed through the dark.

Peter was inside a lighted entryway. He grabbed me and apologized over and over for getting lost. He was shaking. He’d never go off on his own again, he promised. “But it was my fault,” I said. “I should’ve gone with you.”

Neither of us slept well thinking what could have happened. I knew that trip was our last. No way could I cope with the escalating need to keep closer tabs on Peter, and keep track of travel details too. When we got home I tucked our luggage away and made a photo book of our travels to remind us where we’d been.

Now, the smallest outing is an event. We don’t go far, but we have mini-adventures. “Others deal with far worse,” my mother would’ve said, and I know it’s true. Besides, in the end, there’s no place like home.

Header: Queen’s Garden, Bryce Canyon, Utah (2011)

National Society of Newspaper Columnists 2016 contest winner —
online, blog, & monthly under 100,000 unique visitors category.

 

‘When life gets you down … just keep swimming!’

Dory, the brilliant blue, wide-eyed tang fish who stars in “Finding Dory,” has a problem with memory loss much like my husband does. I’d forgotten that Dory was a supporting player in “Finding Nemo” (2003), so I didn’t realize forgetfulness was key to the storyline for the new movie when Leslie took us to see it.

Peter didn’t remember Nemo at all, even though we saw the movie in a theater and have watched the video several times. Nor did he remember “Finding Dory” on the Thursday after he’d seen it on Sunday. But he liked it all over again.

Dory, who hasn’t seen her parents in years, remembers the importance of family, but little else. We just enjoyed a week with family that was filled with raucous laughter and good food. Peter hasn’t forgotten the good times we’ve all had in the past, though specific memories have faded. He can’t even remember much about the past eight days.

Screen Shot 2016-07-10 at 5.17.39 PMAnytime either of is down in the dumps, I look for reasons to laugh. According to Dory, swimming would help too…if Peter knew how to swim. He can’t even float, except two feet below the surface. That’s always makes me laugh, though he doesn’t think it’s funny at all.

Credit: Disney•Pixar “Finding Dory” (2016)

 

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