Find Peter!

Nearly two months have passed since Peter took a five-hour walk away from home. That’s eight weeks of frustration for both of us, him because I had to follow along when he walked Nobby, and me because I had to follow along when he walked Nobby. I’d learned the hard way that I couldn’t let him go by himself any longer.

It was mid-July before I decided on and ordered Peter’s PAL (Protect and Locate) device sold under the umbrella of International Project Lifesaver.  Then, several more weeks passed and multiple shipping hiccups occurred before it arrived, just hours before we left for a ten day visit to Carolynn and Bill. Not that I had any warped ideas that I could set it up myself!

Leslie and Martin applied all their considerable technological know-how and stick-to-itiveness to get it working while we were gone. Even for them it was not easy — “You really could not have done it, Mom” Leslie said — but now, at last, Peter is “free” again.

Happily, and completely unexpectedly, he didn’t object to the clunky-looking “watch.” Yes, it is a digital watch, but more importantly, it’s a tracker too.

“With this,” I told him, “you’ll be be able to walk Nobby by yourself. Without it, you’ll be stuck with me going along every time.” With no hesitation he chose his new PAL over me tagging along. No doubt about where I am on the totem pole!

He had a lot of questions, but then he would. Tucked inside his blurring brain there is still DNA with “engineer” written on it. “How far can I walk?” was his first question.

“Not as far as you walked the last time you walked alone,” I said, my left eyebrow on high alert. His slight nod told me he remembers, if foggily, that he walked a long way the wrong way in hot sun. Rightly or wrongly, I continue to force him to remember what he’d like to forget.

His second question was, “Will it tell me when I’ve gone too far?”

The short answer was, No. Later, it occurred to me that I should have said, If you’d ever agreed to using a cell phone, then I could call you when the tracker shows you’ve gone too far, or you could call me for help. But that would’ve been thirty-eight wasted words.

Each time he repeated his two questions, I reminded, “All you have to do is walk. I have to be ‘tuned in’ for a possible alert, check my phone for texts, the computer for a map, and be ready to  jump in the car to pick you up.”

He shook his head. “How does ‘it’ know?”

“Smoke and mirrors and a satellite in the sky,” I said.

He shook his head again. So many technological advances have taken place since the last time he was curious enough show interest.

It took all Leslie’s considerable teaching skills to pound the multiple steps into my head. She already knew I had little capacity to absorb any more high-tech stuff. I wouldn’t be surprised if she had a lesson plan labeled, “Teaching Mom.”

Nobby is little miffed.

Header: Nobby anxiously watches for his master.

 

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Caregiver’s worst nightmare.

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

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‘Who in the world am I?’ Alice asks.

“You’re not working a puzzle,” I said to Peter one day at lunch. “Have you finished already?” (He always does a Sudoku, Wordy Gurdy, or crossword; I always have my nose in a book.)

“A puzzle?” he asked. “Do you mean you?”

I laughed. “That’s good,” I said. “Haven’t heard that one before.”

Peter laughed too. “Neither have I.”

That little glimmer of the old Peter was a peak in an otherwise down day. Our laughs lately are a bit further between, but we milk the ones that come along.

This 500-piece “Alice in Wonderland” jigsaw puzzle was a family Christmas gift several years ago. Over the past weeks, Peter put it together again, with more than a little help from Samantha, Leslie and Martin. I’ve often thought Peter’s dementia…Alzheimer’s…must make his head feel jumbled like Alice’s: “I wonder if I’ve been changed in the night? Let me think. Was I the same when I got up this morning? I almost think I can remember feeling a little different. But if I’m not the same, the next question is, ‘Who in the world am I?’ Ah, that’s the great puzzle!”

Indeed.

 

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‘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.

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Wuz Goldilocks here?

In recent months, Peter has been much sleeping later in the mornings, sleeping downstairs occasionally, getting up in the night to go to the bathroom and then going to another bedroom to finish the night.

Oh yes, I’m aware when this happens — Leslie calls it “using my mommy ears” — though I’m not necessarily wide awake.

In the wee hours one night I woke up and realized Peter wasn’t in bed and hadn’t been. The sheet on his side was cool and still smooth. I didn’t look at the clock, but I knew from the hush on the street outside that it was about about four. Just then the floor creaked. Peter was tiptoeing along the hall trying not to wake me.

When he opened the door, I asked where he’d been…as if he’d remember. “I just went to the toilet,” he said, climbing into bed.

“Um, no, you haven’t been here at all,” I said, but he was already asleep.

After sunrise I got up and headed downstairs for coffee. Whoops, what did I just see, I asked myself as I reached the top of the stairs?

I backed up and looked in Carolynn’s room. The bed was slightly mussed and looked as if someone had been sitting on it.  Then I peeked into Leslie’s room where the bedcovers were turned back, the pillow squashed. Peter’s slippers were placed neatly beside the bed and his winter jacket was hanging on the bedpost. “Hm-m,” I said.

Leslie’s bed was just right.

The coffeemaker’s drips woke my brain and I soon solved the mystery. The pillows on the sofa were piled up in a way that told me my husband had tried to sleep there using the cushions and his jacket for warmth. Upstairs, he’d first tried the bed in Carolynn’s room and decided it was too hard, but in Leslie’s room the bed was just right and he no longer needed his jacket for warmth.

When he finally came down, he sat in his chair — just right — and I gave him his coffee. I was tempted to offer him a bowl of porridge, but I kept that thought to myself. He doesn’t have a sense of humor in the mornings.


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Header: Carolynn’s bed, too hard.

Wrinkles in time, smoothed.

Peter has been sleeping much later in the mornings, sometimes until ten or after. On the one hand, that gives me time to write or go for my morning walk, but on the other hand, I wait for him to get up so I can do laundry, tidy the bedroom, or maybe run an errand. While I’m glad to have extra time to myself, I’m also testy with him because he sleeps undisturbed while I wait to get my chores done.

Ironing, for instance.

Peter wears long-sleeved dress shirts every day and they need, if not ironing, then at least touch-ups. True, I’m the one who nags him to put his shirts into the hamper, while he insists they’re clean even when they’re so stiff they could walk to the laundry room. If he hasn’t spilled soup on the front, he says they’re fine.

I seldom have time, or more correctly, seldom have the inclination, to iron his shirts, or anything else, anymore. Recently, when he asked if he could help me, as he does several times a day, I suggested he iron shirts. And he did! He does a better job than I do, although he thought eight shirts were too many to do in one afternoon. Humph.

The next time he asked if he could help, I again suggested he iron shirts. Those shirts still hang, wrinkled, in the guest room closet. He doesn’t want to do them and I’ve decided to go on strike. He can no longer do most things around the house, but he can still use an iron and, well, he’s the one who wears the shirts. If he chooses not to iron them, then wrinkled they’ll be.

It isn’t really about the ironing, of course, it’s about all the other tasks that pile up like unmated socks. Another iceberg lurking.

If it were possible to smooth the “wrinkles in time” to squeeze more hours into a day, I’d get the iron out…or ask my husband to do it.

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Domino effect.

“You know how to play dominoes, Pete?” Bill asked on Wednesday. That question was all it took to wind my husband up after four weeks of down.

Not only did Peter go on and on about the social aspects of an Englishman “going ’round t’pub” on a Saturday afternoon, leaving “the little woman at ‘ome,” he chattered about the game  of dominoes itself. Bill always wanted to learn how to play, he said.

Peter’s sudden change four weeks ago forced me to act. I’d reached the end of my rope, stressed, dithery, muddled, still trying to handle everything myself. Leslie and Carolynn got after me, good daughters that they are. As happened, Bill, who’s been helping Peter for almost six years, suddenly had more available hours per week.

Serendipitous!

Monday, I’d arranged to use more of Bill’s time and provided a list of ideas and hints to guide him. In spite of Peter’s usually cheery persona, he isn’t always an easy client. And there are a lot more things to be aware of these days. His confusion has amped up.

So Bill was primed about dominoes. He no sooner mentioned the game than I began to look for our set. “It’s really easy,” I said, “but Peter can keep track of which ones haven’t been played. I just play what matches.” He laughed.

The two were out longer than usual Wednesday, while three of my friends came here for a lunchtime meeting. We did have some business, but more importantly, we laughed…a lot! It was a good time.

That evening, Bill texted to ask how Peter had seemed when he came home. “He was great,” I texted back. “You struck a chord mentioning dominoes.  More like himself than he’s been since that time…four weeks ago.”

The rest of the week was mixed ups and downs, but that one big, bright UP on Wednesday made such a difference.

Today we played dominoes, Peter and I. No surprise…he won…best of three.


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2016 National Society of Newspaper Columnists’ contest finalist.

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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Down the down staircase.

The downward path that any of the dementias take follows various routes, with stops and starts along the way. There are plateaus when it seems the diagnosis is a bad dream, when everything seems all right again. Normal.

Until the next minute or hour or day when the nightmare resumes.

Even though I often say — and truly believe — that my husband isn’t as bad off as most, that my caregiving tasks are easy compared to some, truth is, it’s a roller coaster ride that is not for sissies.

We’d been coasting along with mild ups and downs, a kiddie roller coaster, until one day three weeks ago. Peter and Nobby returned from a weekly nursing home outing with ever-faithful Bill. My husband came back so distressed and overwrought that it was as if had morphed into another person entirely. His mild-mannered self was gone, and in its place was a man I didn’t recognize. His face was different, his eyes were wild, his whole demeanor changed.

“That’s it. We’ll never go back there. Can’t go anymore,” he yelled as he paced. “They won’t let Nobby in any more.”

My worst fear came to mind. “Did Nobby knock someone down?” I asked. He’s a big dog, but as affable and lovable as a puppy. I envisioned him jumping on a frail old lady causing her to fall and break her hip.

“No, no, but they won’t want us anymore!” I continued questioning, but he couldn’t explain.

I contacted Bill to ask what had happened. He said Peter seemed “off,” very quiet, and he hadn’t wanted to go to their usual lunch. Nobby had been his usual friendly self,  no one was harmed, the visit had gone as well as it always does. Bill chuckled when I told him Peter thought he had gone to visit his mother. (Bill’s mother passed away twenty-some years ago.)

That day was a turning a point, a sharp turn in the steep, down staircase. I had hoped he’d magically snap back to the way he was, to the holding pattern he’d been in, but he hasn’t. This, then, is his new normal.

 

Nobby always watches Peter.

 

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The tip of the iceberg didn’t sink the Titanic.

Who would ever think that something as inconsequential as a manicure would be the tip of an iceberg? Somedays I look at my hands — never my best feature — in despair. Nails chipped and split, cuticles like the pithy strips inside an orange.

Lately, I haven’t had time to indulge myself, because during the hours I have help for Peter I have to squeeze in shopping, errands, or all-important time to get together with friends. Yet, I make time to attend to his fingernails. He can’t, or won’t, do it anymore. His nails are strong enough to, well, pull nails, and they’re very difficult to trim. I have him soak his hands in warm soapy water to make it easier on both of us, but he complains and wiggles, although I think he secretly likes it.

And I drag him to get his hair cut and beard trimmed. I’ve tried to do both, but failed. I schedule our appointments back-to-back for my convenience. It’s one less trip, but it does take away from that bit of time for myself. Such a small thing, an iceberg’s tip, but underneath…!

images-1As dementia — Alzheimer’s — continues its march, I know more and bigger icebergs lurk. I already have a list of potential problems that lie ahead. The only thing this caregiver can do is lookout for laughs — lifesavers — and go full speed ahead.

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

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Header: A “berger bit” iceberg in Alaska, September 2006.