Knock, knock. Knock, knock. Knock, knock. Knock, knock.

Knock, knock. “Who’s there?” I yelled. Oh no, I thought. It was 10:30 and I was in the shower, rushing to get ready to run an errand before I met friends by 11:30 for lunch. 

“Where are the keys to my car?” Peter asked from outside the door. He hasn’t driven for years, but Bill had arrived to take him and Nobby for their weekly nursing home/ therapy dog visit.

“Black chair in the dining room,” I hollered. I didn’t think he’d remember that by the time he got downstairs and he didn’t. 

Knock, knock. “Where are the keys to the car?”

“Black chair. Dining room. Orange ribbon tied on the key.”

By the next knock knock I was toweling off. Peter cracked the door to ask, again, “Where are the keys to the car?”

“Peter-r! Black chair. Dining room. Orange ribbon…,” I said, “but wait!” I had a brilliant idea. I grabbed a pad of paper off the nightstand and wrote black chair, dining room, orange ribbon. “There you go,” I said.

Minutes later, he was back holding my keys in his outstretched hand. “These?” he asked.

Argh-h. “No! C’mon, I’ll go with you.” I wrapped my robe around me, ran downstairs to the black chair in the dining room and picked up the key with the orange ribbon. “Here,” I said as I handed them over.

“Oh-h, I didn’t look there,” he said.

By then, I didn’t have enough time to go order the new refrigerator I’d been researching for weeks and that we’d needed for months. Instead, I went directly to the restaurant and vented to my friends about my morning. Of course they laughed, but I could’t, not then. By the time lunch was over I’d convinced myself I could place the fridge order the next day. It would be fine.

Thursday I managed to get out of the house with just enough time to take care of the order before an appointment. But I was a day too late take delivery the next week. Now it’ll be the end of November. Santa Claus will be knocking on the door by then. 

These days the ho, ho, ho’s are harder to come by, but still I look…

Knock, knock.
Who’s there?
Doris.
Doris who?
Doris locked, that’s why I’m knocking.

He was polite.
Too polite.
He knocked before he opened the fridge door.

Knock, knock.
Who’s there?
Amanda.
Amanda who?
Amanda fix the refrigerator.

Groan.

 

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There were thirteen from our group of  twenty-seven at lunch last week. We usually cause quite a ruckus, chattering and laughing the way ladies who lunch do. Wednesday was no different.

At one end of the table, four of the six of us talked about dementia, more specifically the dreaded “A” word, Alzheimer’s Disease.  What I’m experiencing with my husband now is only one view of what others have experienced with their loved ones.

After I got home I tried to remember how many of the thirteen had been, or still are, on the same one-way road I’m on. Seven! Seven out of those thirteen women have cared for, suffered with, and lost or are losing mothers, sisters, aunts, brothers, husbands. Three more in our larger group are affected in one way or another, too.

There’s no laugh in this post today nor in any of the grim statistics that fall under the umbrella of dementia. But there are these thoughts about the importance of laughter from the Central California Chapter Alzheimer’s Association newsletter:

“There is nothing humorous about dementia. However, laughter can help dementia caregivers and improve the quality of life for those afflicted by the disease. Studies show that laughter boosts the immune system and triggers the release of pleasure-inducing neurochemicals in the brain. In terms of dementia-specific benefits, the greatest advantage of humor is that it provides sufferers with much needed mental stimulation. Humor challenges our loved ones to engage their minds as fully as possible [and] it’s also an effective tool for keeping social links active and reducing…paranoia and agitation that many […dementia patients struggle with.]

— Marcy Oswald, MFTI, Education & Care Specialist

 

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Laughs every day are harder to find.

Maybe it’s the shorter days, the longer nights, the unseasonable cold eight weeks ago, the unseasonable heat this month, or maybe the light at the end of the tunnel burned out, but I’ve really had to search for laughs to drag me, us, along recently.

One evening.

Leslie, Martin, Peter and I had a Friday night dinner and movie date, but there was a line out the door of the restaurant we’d chosen. We had little time to spare, so we ended up at the one place I’d said no to: Red Robin. Not that there’s anything wrong with it, but Peter had been there twice that week.

We’d no sooner ordered than another waitress came by and skidded to a stop beside our table. “You didn’t come say hello to me,” she said, grinning at Peter. “What’s up with that?”

Peter laughed. “I didn’t know I was coming here.”

“I’ll let you off,” she said, “I wasn’t supposed to be here tonight, but someone called in.” She looked at the rest of us. “He makes us laugh ordering ‘cish and fips’ when he comes for lunch.” Peter grinned. They make such a fuss over him at Red Robin. The bonhomie reminds him of an English pub.

Later that evening.

We were about one hour, thirty minutes into a one hour thirty-seven minute mildly entertaining movie. Peter fidgeted and twisted in his seat. Bored, I wondered? Hm, no. “Do you need the loo?” I whispered.

He was annoyed that I asked. But suddenly he got up, felt his way along the row, down the few steps, and he was gone. “He won’t know how to get back,” Leslie said, as if I didn’t know. I groped my way out and followed.

In the hallway Peter fumbled at a door marked with the international symbol for family restroom. “Can I go in here?” he asked. I nodded. He dashed inside.

Even though the movie was a bit of a ho-hummer, I wanted to see the ending. I paced outside the theater door, then noticed the sign above said “Blade Runner.” I looked around. None of the doors’ signs said “Home Again.” Ack! Was I lost? By the time Peter emerged, I’d realized our film only ran at 7:30. “Blade Runner” would be shown at 10:00 in the same theater.

Back inside, just before the closing credits, I told Leslie I’d gotten confused. Of course she laughed as she does, but I didn’t try to explain to Peter. He would’ve cracked up knowing I’d been lost…momentarily.

The next morning.

Peter was in the kitchen clattering around. I pictured dishes suffering new chips and silverware headed for the waste bin instead of the dishwasher. I went to check. Ah-h!

“Peter, those haven’t washed yet,” I yelped when I realized he’d taken dirty plates, glasses and silverware from the dishwasher and put them into cupboards and drawers. He growled and stomped away. I reclaimed the dirty unwashed.

That evening I took a couple salad bowls off the shelf. Both were encrusted with bits of tomato and lettuce. Ready made salad, right out of the cupboard! What a concept.

Peter had the last laugh, because his mistake was my fault. I hadn’t switched the color-coded sign I stick on the dishwasher from  yellow/clean  to pink/dirty. How was he supposed to know the things he’d removed were dirty?

 

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Saturday morning I circled the soccer matches — “football” to my English husband — in the sports pages and wrote the channel numbers beside each. I was determined to forge a better day than Friday had been.

When Peter finally got up, the first game — ManU at Liverpool — was about to end. “This one’s nearly over,” he said, noting the score was nil-nil with seconds to go.

“Yes, but look, Chelsea plays Crystal Palace at ten,” I said. “Then, Arsenal at Watford at half past twelve. They’re your teams, aren’t they? Should be good matches.”

He nodded. “Fulham! Arsenal! Chelsea! Crystal Palace and Watford don’t have a chance.”

“Funny, you forget all sorts of things, but you don’t forget your football teams.”

“I don’t forget anything,” he said.

Hmm, I thought. How I wish that were true.


Crystal Palace shocks the boots off Chelsea, 2-1

Watford kicks in the Arsenal, 2-1
No joy for the Chelsea and Arsenal fan in our house.

 

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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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