Love and loneliness sit together.

Maybe I shouldn’t have been so quick to write a post about Peter’s acceptance of his new wrist-hugging PALLess 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 finalistscreen-shot-2016-12-07-at-10-14-53-am

‘Peaks and valleys,’ he said.

We were an instant couple, Peter and I, when we met forty-some years ago. At the time, I was a struggling single mom with two young daughters to raise. “Peaks and valleys,” Peter would counsel when I fretted, “life is all peaks and valleys.”

I’ve thought about his mantra recently and wondered, would he even understand the meaning of the words now. As his dementia worsens the valleys are deeper and wider, the peaks, fewer.

A week ago, we teetered on the edge of an abyss.


The day started beautifully, definitely a “peak.” Soft warm breezes encouraged me to garden and Leslie came for lunch and cards. Perfect. Peter used her visit as an excuse to take his lunch to the basement where he’d watch t.v. Two hours later, when I yelled to tell him tea was ready, the silence below screamed. The basement was dark.

I dashed upstairs calling his name. Gone.

Gone!

He’d sneaked out while Leslie and I sat just outside. I use “sneaked” advisedly because he’s done it a few times. He has a “stealth” mode that allows him to slip away. Nobby, usually at his side, wasn’t with him because for the previous four days he hadn’t walked at all. His woeful puppy eyes told us his old arthritic knees ached.

Leslie took charge immediately, while I, heart-hammering and generally useless, attempted to follow her orders. She called the police, family, friends, told me to send photos of Peter to her, posted Facebook messages. With three photos on her phone, she sped off to nearby businesses — grocery, restaurants, bakery, wine shop, hairdresser. I stayed home to answer phone calls and texts, to be there in case he came back on his own. I called friends to be on the lookout and soon, unbidden, Peter’s carers, Karen, Bill and Mark, showed up to offer help and support.


The power of Facebook startled me, a hesitant user. Re-posts popped up quickly. Granddaughter Samantha, who lives in Washington, DC, has a friend with a niece who’s interning with our local EMT squad. Some four hours after I discovered he was gone, the young woman, thanks to her aunt’s post, spotted Peter on the steps of a church on the northern edge of town.

Meanwhile, son-in-law Martin, directed by Sam 267 miles away, went to collect Peter. Sam was still on the phone with her dad when Peter got into his car. “Want to talk to him?” Martin asked Sam.

She said yes, even knowing her Dad-Dad hates phones. “How you doin’, Dad-Dad?”

He chuckled. “Well, Luv, I thought I was going to get away,” he said, “but they caught me.” Hours walking in the hot sun, no hat, badly sunburned, no water,  tired and confused, he was still ready with a joke. Just after seven Martin brought him home. “I’m in trouble, aren’t I?” he said.

He hugged me so tightly I feared for my ribs. “No, not in trouble, but Steps. Will. Be. Taken,” I said, raising my left eyebrow to high-threat-warning level. He shook his head and gazed at the roomful of people without seeing them.

“Why did I do that, where did I go,” he asked over and over.

“If you don’t know why, then no one does,” I said, “and where you were is a mystery to all of us.”

Steps have been taken. Leslie installed door alarms that screech when the doors are opened and I’ve chosen a bracelet-style gps that will help me keep track of him. He’ll hate it.

In the meantime, we walk Nobby together. Peter doesn’t like it because he wants to be out in the neighborhood on his own with his dog. I don’t like it either because the half hour they walked was thirty minutes to myself, to read, write, or do nothing at all.

In that one afternoon, our lives changed more dramatically than the day, years ago, when the doctor diagnosed “early dementia.”

From now on the peaks will be ever smaller, the valleys, broader and more difficult to traverse.

Header photo: Victoria Falls, Zambia, September, 2005.
Bottom photo: Alaska Range, Mt. KcKinley in the distance, 2006.

2016 National Society of Newspaper Columnists’ contest finalist. screen-shot-2016-12-07-at-10-14-53-am

Trouble with a capital T rhymes with me!

My friend Bette made it a point to tell me she’d seen Peter at the grocery store recently. She figured I must be in the store somewhere, although she didn’t see me. Bette introduced herself to him because she knew he wouldn’t remember her name. His response was quick and so typical of him. “Don’t tell ‘anyone’ I’m here. I’ll be in trouble.”

Anyone meant me, of course.

She didn’t remember what day it was, but I figured it was probably the Tuesday he snuck out without telling me he was leaving, nor where he was going. When I realized he wasn’t here and that he had probably been gone well over an hour, I went looking. By the time I got home, he was back. “Where’ve you been?” he asked, greeting me at the door as if he’d been out looking for me.

“You didn’t tell you were going out,” I said. “I’ve been looking for you.”

“I didn’t know where I was going,” he said. “I just went for a walk.”

“Where?”

DSC01592He shook his head. “Can’t remember.…that was a long time ago.” He uses the “long time ago” line a lot in attempt to joke his way out of Trouble. His only Trouble would’ve been if he had gotten lost for real!

That evening I found a Hershey bar wrapper and deduced that he’d gone to Kroger’s.

Several days later someone else told me she’d seen Peter at Kroger’s and he seemed confused. She saw him leave and decided to call me — it was that same Tuesday. I didn’t see her voice mail until after he’d “found himself,” but it is comforting to know we have friends to help me keep track.

Screen Shot 2016-06-15 at 11.56.06 AMI am researching personal tracking devices. There are several types on the market, but he wouldn’t use any of them willingly, and I know he would find ways to “lose” them. He’s crafty that way.  I wish someone would come up with a microchip like veterinarians implant in dogs. The idea would make Peter laugh…I think that will be my little secret.

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Breadcrumbs?

 

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

Hello! My name is…

Bad enough that our doctor and our dentist have the same last names. Not only that, but our doctor and Peter’s dermatologist have the same first names and very similar last names. Add to that my childhood friend and another friend from the not as distant past have the same first names. The former’s husband has the same first name as the latter’s surname.

My poor husband doesn’t have a chance of keeping all that straight.

Recently, while Skyping with our friends in England, Martin and Anna, Peter was confounded by a question Martin asked. He came running to me, mid-Skype, to ask about “an old house.” I had no idea what he was talking about, so I followed him here, to my computer. “That house,” Peter said, pointing to a small painting of our previous home on the wall behind him. His friend could see it as they talked, and wondered about it.

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Peter with son-in-law Martin.

“Martin painted that for me for Christmas about thirty years ago,” I said.

“Martin? Martin doesn’t paint,” Peter scoffed, while his friend laughed on the other side of the Atlantic.

“No-o, not that Martin,” I said, “son-in-law Martin!”

“Oh,” he said. “Well, anyway, I don’t remember that house.”

“Peter, we lived there seventeen years,” I said, frustrated. I loved that house, loved living there. He shook his head. Nope, he neither remembered the house, the little village, nor that Leslie’s husband Martin painted the picture. Peter’s old college mate sat at his kitchen table chuckling, not that the confusion was really funny. But, might as well laugh as cry, eh?

Version 4

Mates of old.

Lefty’s is all right.

Our favorite restaurant, Lefty’s, recently moved to another location further along Main Street. I was eager to see it, and to eat there. The food is always good.

images-1When our friends Jerry and Shelia visited last week, I suggested we try the new place, but the men wanted a Guinness and fish and chips so they went to Red Robin. We ladies went shopping first, then to Lefty’s. While we chatted, a favorite waiter walked by. I was impressed,  I said. “Oh, is this the first time you’ve been here? Your husband was in last week,” he said. “He was with…”

“Bill,” I said “his companion. He didn’t say they’d been here, but then he doesn’t even remember what he’s eaten when they go out, much less where.”

He chuckled. “We always like to see him. He keeps us laughing.”

“That’s Pete,” Shelia said. “He’s been like that as long as I’ve known him.”

“He’s a good customer. We don’t even mind if he doesn’t pay…”

What? He leaves without paying?” I squeaked. “You do chase him and get the money, don’t you?” (Until a few months ago, Peter walked to Lefty’s by himself occasionally so I could see how it happened without Bill or me to watch him.)

“Nah, we love him, and it doesn’t matter. Evens out anyway because a couple of times he managed to pay twice somehow.”

I thanked him for the kindnesses. Shelia and I laughed, but really, I was embarrassed! Peter gets special service when he goes to Red Robin with Bill or me and now, obviously, he gets special treatment at Lefty’s, too.

As his ol’ granny would have said, “A bit of all right, that.”

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‘In November, people are good to each other…’

I’ve always liked November’s skill at blowing the warm months away with icy jabs, but I didn’t know it was special for anyScreen Shot 2015-11-06 at 4.21.38 PM reason other than Veteran’s Day, our granddaughter’s birthday and Thanksgiving. A surprise delivery of flowers from “The Soul Sisters” a couple days ago changed that. The card was inscribed “Happy National Caregivers’ Month, for the woman who defines caring.”

Me?

I assumed sisters meant Carolynn and Leslie, so right away, I took a selfie and sent them a thank you. Les replied she wished she could take credit, but she could not. Later, Carolynn wrote, “They’re from Robin and me, Mom, we’re soul sisters. Leslie and I are are blood sisters.”  She said she’d never heard of National Family Caregivers Month either, but Robin had.

Leave it to Robin. Carolynn’s best friend is probably the caring-est person I’ve ever known. She’s a go-getter caregiver, a whirlwind, a hurricane.

Peter answered the door when the flowers were delivered. I figured someone was selling something so I was shocked to see a pleasant young man holding a bright arrangement of autumn flowers. “Are you Judith?” he asked.

“Yes-s…”

“These are for you. Have a wonderful caregiver’s month.” I managed to thank him before he bounded off.

Peter’s chin was glued to my shoulder when I opened the card. “Who are they from?” he asked. When I said “Carolynn and Leslie” he wondered why they’d sent flowers? “Is it Clarke with an ‘e’?” he asked. “Maybe there’s another Judith Clarke on this street. Are you sure they’re for you?” he pestered.

I didn’t want to get into an explanation about caregivers, which he wouldn’t understand anyway, so I said, “Even if they’re not for me, I’m gonna’ keep ’em.”

Screen Shot 2015-11-07 at 1.39.16 PM

I kept them.

 

Title: line from In November, a book by childrens’ author Cynthia Rylant.
Leaf graphic: Alzheimer’s Prevention Registry

 

‘The stuff that dreams are made of.’

“Any good movies on?” Peter asked. That’s one of several questions he repeats every single day. “No” is my usual answer because most movies these days, especially summer releases, aren’t our cups of tea. We watch Netflix a lot which suits me — the popcorn is better at home. Recently though, after a stressful week, I surprised him. “Let’s go see ‘Jurassic World’,” I said.

We headed to the huge new movie/bowling alley/arcade/restaurant hub with a stop at Wendy’s first. We snuck into the complex, chocolate Frostys tucked close, and huddled in the gloomy lobby to eat them. The place was a madhouse. And we had to choose seats and buy tickets on a touch screen computer thingie. Ack.

When we entered the theater I burst out laughing. News of summer’s blockbuster hadn’t reached our little burg — only one other couple was there. As the lights dimmed, piercing music jarred us upright in our reclining seats. We plugged our ears and wished we could mute the previews for movies we’d never go see.

Screen Shot 2015-07-21 at 11.43.30 AMWe’d liked the original “Jurassic Park,” but this fourth iteration was at least two too many. The story line was weak and the characters were shallow. “Claire,” the park’s operations manager, raced from one catastrophe to the next wearing a white linen suit and pumps — no dirt, no muck, not even a wrinkle. If the wardrobe designer had any Oscar dreams the white shoes helped dash them.

The evening was the stuff of nightmares.

 

Screen Shot 2015-07-21 at 8.26.56 AM

Sam Elliott and Blythe Danner dream.

“I’ll see you in my dreams” was playing at our lovely restored Lyric theater downtown last week. We had chicken kebabs at a favorite restaurant, got frozen yogurt up the street, then walked to the Lyric. In its pleasant, well-lit lobby, we exchanged hellos and hugs with several friends. Civilized. Perfect.

I asked Peter to hold my yogurt cup while I bought the tickets at the quaint old kiosk. Charming.

The refreshments stand often has homemade baked goods, but theater management doesn’t mind outside treats brought in. I was looking forward to my frozen yogurt. I savor it slowly; Peter finished his before we walked in the door. Tickets purchased, I looked around and saw him leaning against the wall scraping out…wait…my cup!  I knocked people aside to grab it. It was two spoonfuls away from empty.

“That’s mine, you bugger,” I yelped. Heads swiveled in my direction. Oops. There were enough Brits in the lobby to have heard my naughty “B” word. Poor Peter’d forgotten he’d finished his yogurt and that he was holding mine. He was bewildered by my carrying on, but he suggested sweetly that we run back to the shop to get another. “Not enough time,” I grumbled. “I’ll get one on the way home.”

When the movie started — absolutely delightful, by the way — I stopped whining. Nothing better than a romantic comedy to encourage sweet dreams.

My husband is the one with the failing memory, but I’m the one who forgot all about a replacement frozen yogurt after the credits rolled. In the end, Peter had the last laugh.

Is someone here?

My longtime friend Bonnie and her husband Paul visited us for a couple of days last week. They were on their way from Florida to his high school reunion in Ohio.

Bonnie had emailed several times the weeks before. She wanted to make sure it was OK for them to stay with us. “Will it upset Peter?” she wondered. “Please tell us. We understand completely. We could get a hotel room.”

I reassured her that Peter remembered they were coming, though he wasn’t sure he remembered them. They were here two years ago and he’d met them at several of our class reunions, but as he says, he can’t remember what he had for breakfast.

During the days leading up to their visit Peter was extra helpful. We’d had workmen here for a week fixing our sagging carport. Sawdust and grime had drifted into the house, crusting everything. I vacuumed and dusted while Peter scrubbed the bathtub and tidied the flower beds. He mowed the yard almost willingly.

They arrived on time, well, a minute late actually. She texted an hour earlier that their GPS said they’d arrive at 12:11. They rolled in at 12:12. But what’s a minute between old friends?

It was a pleasant, sunny day, so we ate lunch on the terrace. Then Bonnie and I chattered and reminisced the whole afternoon like two women of a certain age who have known each other for all but the first two years of their lives. Paul chimed in now and then because he knew some of the people we talked about, and Peter listened, smiling. We carried on through dinner and sat outside until the lightning bugs’ glow wasn’t bright enough for us to clear the table.

Back inside, Bonnie pulled out the eight millimeter movie film she’d brought along. She had never seen it, but she’d checked beforehand to make sure I still had my dad’s old projector. The film showed her learning to walk and on through Christmases and birthdays to the age of six or seven.

Peter laughed at us laughing with tears in our eyes.

The next morning I was having my second cup of coffee when Peter came downstairs. He looked puzzled. “What’s going on upstairs?” he asked. “Is someone in the bathroom?”

I chuckled. “Well, it’s either Bonnie or Paul,” I said.

He was still confused.

“Bonnie and Paul…they got here yesterday!” No matter how enjoyable the day and evening had been, he could not remember that we had overnight guests.

He slathered his usual two slices of toast with Keillor & Sons orange marmalade, poured coffee into his big green mug, and sat down to read the paper. He reads the paper again every afternoon because he forgets the news he’s read hours earlier. And he truly can’t remember what he has for breakfast, even though he has the same thing day after day after day.

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Gold Coreopsis brightens shady spots, while Black-Eyed Susan vine (at top) seems to glow in the dark.

 

 

Note: A good time to laugh is anytime you can.

Adventures. That’s what my friend Joanne and I called our treks to out-of-the-way places for lunch, sight-seeing or shopping. Sometimes we were gone most of the day. That stopped when I realized I couldn’t leave my husband on his own for so long. So one day Jo and I decided we’d walk right around the corner to Lefty’s for lunch.

“Peter, come with us,” Joanne said.

“No, no, I’m good,” he said. I knew he really didn’t want to listen to us chatter the way we do.

The restaurant is quite small, so we went early to beat the lunch crowd. Our mouths were going faster than the traffic outside when I, facing the street, saw Peter walk past.

“Wonder where he’s going?” I said. I wasn’t worried because he often walks to the grocery a block further. We took our time over lunch. When we got up to leave, I glanced at a table a few feet away, and there sat my husband, his back to us, with a beer in front of him.

Neither Joanne nor I saw him come in. We sidled over to his table and I slid into the chair beside him. “Can I take your order, Sir?” I asked.

He was startled. “I’ve already eaten,” he said, straight-faced. Joanne started laughing.

“I saw you walk past an hour ago.”

“I came back…!”

“Didn’t you see us?” I asked.

“No, didn’t you see me?”

“No, but you must have looked right at us when you came in…”

“I didn’t see you.”

That shouldn’t have surprised me. It isn’t unusual for my husband to come into the room and not see me sitting on the sofa. I wasn’t surprised that we hadn’t seen him since we were at a right angle to his table and his back was to us.

Screen shot 2015-04-17 at 12.23.43 PM

Artist Rebecca Murtagh’s, Post-it notes installation, Hamilton College, Clinton, NY

A few weeks later, our friends Jerry and Shelia were here. We were going to Lefty’s for dinner, and I told them about Peter not seeing Joanne and me there one lunchtime. They laughed, as did Peter, though I was sure he didn’t remember the day. I stage-whispered to Jerry, “Good stuff for my blog.” He nodded. I should have made a note.

We went around the corner, and while we waited for our food we amused ourselves trying to identify the photos of famous lefties beside our table. We knew da Vinci and Rembrandt, Einstein and Edison, but were stymied by a man I thought was Woodrow Wilson (Henry Ford), and a woman who, we found out, was Helen Keller. Peter joked he’d never met any of them.

As we carried on like the old friends we are, I suddenly thought, this is good stuff, too, but the idea I’d had a few hours earlier hadn’t stuck. I asked Jerry if he remembered my idea.

“Unh uh…oh, Lefty’s!” he blurted.

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Shelia hooted. “You two can’t remember the story and we’re in the restaurant where it happened!” She looked at my husband and laughed. “Pete, who has memory problems now, hm?”

Shared laughs are the best.

 

Screen shot 2015-04-10 at 3.17.56 PM

 Screen shot 2015-04-18 at 1.02.30 PMArt Fry, co-creator of Post-It® notes, started using the “light tack” notes — 3M’s “solution without a problem” — to mark his hymnal at choir practice. Art’s bright idea is one I use to help Peter, and should use to help myself!

Double whammy in four pages and sixteen hundred words!

Comedian Jerry Seinfeld opened the door for me — figuratively, not literally.

Brian Williams, NBC Evening News, did an interview with Seinfeld (11/6/14) to showcase his fifth season of “Comedians in cars getting coffee” web series. Seinfeld veered from the topic however, when he told Williams he’d decided he was someplace on the Autism Spectrum. He’d seen the Broadway play “The curious incident of the dog in the nightime” based on the book by Mark Haddon, and he recognized himself in lead character Christopher Boone. Young Boone, uncomfortable with eye contact, being touched, and with people in general, all common autism traits, is not labeled in the book or the play.

Screen shot 2014-11-11 at 11.22.04 AM“I’ve always been a literal person,” Seinfeld said. “So, if someone says [their child] is the ‘apple of their eye’ I don’t know what that means. There’s no ‘apple’ in an eye.”

He went on to say he’s observed in himself behavior that makes him think he may have autism. “I think, on a very drawn-out scale, I’m on the spectrum,” he said. “Basic social engagement is really a struggle. … But I don’t see it as dysfunctional. I just think of it as an alternate mindset.”

When I watched the interview and a follow-up the next evening, I realized it gave me the opening I’d been looking for to go beyond dementia in this blog. In “Thinking for two” (9/15/14), I wrote: “What keeps Peter somewhat steady, I think, is that he is now, and always has been, so bloody single-minded, the effects of a separate issue. I never thought I’d be glad that was the case.”

The “separate issue” I hinted at was known as Asperger syndrome (AS) until two years ago. For some years, AS was considered a less severe form of autism. Long before dementia and possible Alzheimer’s disease entered our lives, Leslie described AS to me. I’ve always loved hearing my daughters talk about their careers, Leslie’s teaching related to autism spectrum disorders,* and the drama that is inherent in Carolynn’s oncology nursing field.

[*The American Psychological Association did away with the term Asperger’s Syndrome in 2012. But it was years earlier that Leslie enlightened me about AS, so I will use the term here, and stand corrected by my daughter later.]

In our long-ago conversation Leslie explained that people with the diagnosis frequently were slow to talk as children, unable to converse as adults, couldn’t look others in the eye or show emotion, and they weren’t necessarily personable.

“That sounds like Peter!” I said. “His mother had a stack of books she’d read when he was little to try to figure out why he wouldn’t talk. He was such a loner, but always comfortable with much older people or much younger children.” That was still true. I didn’t know whether to laugh or cry.

“I didn’t know all that, Mom,” Leslie said, “but, you’re right, a lot of of the characteristics apply, and goodness knows he’s uncomfortable in social situations.”

She said she’d test him — Leslie can get Peter to agree to anything — and thus that part of our journey began.

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