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.

Header photo: What a pair, pear.

2016 National Society of Newspaper Columnists’ contest finalist. 

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.

Header photo: Walk in the Adirondack Park.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

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)

2016 National Society of Newspaper Columnists’ contest finalist. 

 

‘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)

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

 

 

 

 

The right eye had it.

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?

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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. 

It was a date.

“I know what the date it,” Peter said suddenly, “but I don’t know the day.”  We were having coffee at our favorite bakery. We go there fairly often, but this was a special day.

“Mmm,” I said, “what is the date then?”

He nodded towards the large hanging blackboard that had specials listed. February 26, 2016 was written across the top. His birthday.

Version 2

I laughed. “That’s why we’re here. It’s your birthday. And it’s Friday by the way.”

Version 2

“My birthday? I didn’t know…”

“You didn’t know even when I said ‘Happy Birthday’ when you got up, nor from the message I put on your board…?”

“When was that?”

“First thing this morning,” I said.

“Oh, that was a long time ago.” Thirty seconds is a long time ago for him these days.

It turned out to be one of his best birthdays ever, I think. We went to see the newly released “Eddie the Eagle” followed by fish and chips at Red Robin. I figured the movie — about the young Englishman who decided to compete as a ski jumper in the 1988 Calgary Olympics — would be a sure bet. And it was. Most films with English overtones catch Peter’s fancy, and this one laugh-out-loud funny and punctuated with Olympian excitement and hope. We laughed at Eddy who had no fear, and groaned and yelped at his spectacular crashes. We trained and strained with him as he worked toward his goal. The movie was the perfect antidote for the week I’d had, and a perfect birthday treat  for my husband.

Later, he pronounced his fish and chips “good as always.” We even shared Chocolate “Fruffles”™ to drench in fruit “ketchup” and whipped creme. What’s not to love?

“So you liked the movie, then?” I said. “Good, wasn’t it?”

“What movie?” he asked, then shook his head disgustedly. “Sorry, I’m sorry. I don’t remember.” I gave him clues — “English…skiing…Olympics…Eagle” — but nothing sparked his memory.

He noticed his message board for the first time when we got home. Later, he jotted a note to me: THANK YOU.

Even if he couldn’t recall what he was thanking me for, that made my day.

Header photo: Chairs at our favorite bakery, Our Daily Bread.

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2016 National Society of Newspaper Columnists’ contest finalist. 

His sneezes, like his questions, are repetitive.

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.

imagesimages-2There 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.

 

Sneezy and Grumpy sketches: “Snow White and the Seven Dwarfs,” ©Walt Disney Studios, 1937

Header photo: A sneeze magnified.

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. 

‘I can’t go back to yesterday because I was a different person then.’

Losing car keys doesn’t mean Alzheimer’s disease is lurking, but forgetting what the keys are for might. That’s a simplistic example of the difference between simple forgetfulness, and a more serious problem.

I asked Peter to put some towels into the washer. He went to the laundry room and stood in front of the washer and dryer, muttering. After a few minutes he said, “Which one do you want me to use?”  Since he hasn’t done his own laundry in forty years or more, the question wasn’t too surprising.

On the other hand, I’ve been doing weekly laundry for more than fifty years, but lately I simply forget it until I realize I’m out of underwear! I do know which appliance is the washer, which, the dryer.

Once upon a time I was so organized that my brain was a calendar, neatly compartmented with to-do lists. I never left work without clearing my desk and writing a chronological list of the next day’s projects. When Peter left work, papers were an avalanche waiting to happen. Pens and pencils were strewn like trees in the Midwest after a tornado. Dust bunnies raised families in the crevices of his desk chair.

Now, both his desks look like a military parade: pencils and pens aligned at right angles to the front edge, calendars hung at studied levels — turned to the wrong months however — and stacks of coins in ranks as if on review. His other desk, the one dedicated to model ship building, is arrayed similarly: special brushes and tiny tools in rows, regimented.

My desk looks as if the recycling truck backed up and dumped a load of papers, boxes, sticky notes and Mentos wrappers. Every few weeks I attempt to organize my desktop and files. The mess is viral.

Household chores? While Peter attends to his self-assigned tasks, I seldom even clean the coffee maker anymore. For many years I had a rigid first-Friday-of-the-month routine: run vinegar through the coffeemaker, use baking soda and vinegar in all the drains, and turn the mattress, end-to-end one month, side-to-side the next.

pea_princessBack then, flipping the mattress made us laugh so much we couldn’t lift the thing. Neither of us remembered, one time to next, how to do it, end-to-end or side-to-side, without demolishing the ceiling fan. Last week, I realized we hadn’t turned the mattress in months. I called Peter to help.

We’ve never agreed how to do it. In the past we laughed at our contortions, but this time we barely managed to heft it, much less laugh.

Time was, I vacuumed and dusted obsessively. Now I have Carri who does it for me, and if she’s away, I don’t bother. Peter likes to “Hoover,” as he calls it, but insists on parallel lines across the rugs. He combs their fringed edges with a fork. I wish his hair looked as good.

We’ve reversed habits. His new obsessiveness stems from a need to have control. My escalating lack of organization says I have more chores than I can manage, so I let everything slide. Peter can’t help himself, but I really must revive my routines.

A magic wand might help!

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Quote at top: Lewis Carroll, Alice in Wonderland

2016 National Society of Newspaper Columnists’ contest finalist. 

Random thoughts, not remembered.

Peter has trouble expressing himself more and more frequently. The other evening he was trying to explain something, but his words were jumbled. I leaned closer hoping I could catch a few words and make sense of them. Instead, he smacked himself on the head and said, “My thoughts just won’t stay in one place long enough for me to remember what I’m trying to say.”

We both laughed, but that in itself was quite a mouthful for him these days.

APHASIA (uhfey-zhuh) noun, Pathology.
The loss of a previously held ability to speak or understand
spoken or written language, due to disease or injury of the brain.

It’s so difficult for those of us whose thoughts do stay in one place to imagine what it would be like to have some form of dementia. Peter falls back on his sense of humor to get by, and I borrow on that a lot. At times, though, it’s exhausting, probably as much for him as it is for me.

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©Dan Murphy cartoon, 6/18/95

Later Peter asked, “Did you know me before my mind got like this,” he waggled his hands above his head, “before my bike accident?”

“Of course I did, silly,” I answered. “That was in 1980. We met in 1974. Besides, your mind didn’t get ‘like this’ until a few years ago. ‘”

“How do you remember all that?”

“‘Elephant brain’,” I joked. “Important stuff. How could I forget?”

“I did,” he said sadly.

Header photo: web grab

2016 National Society of Newspaper Columnists’ contest finalist.