The door doesn’t buzz for me.

This wasn’t a stick-of-butter-in-July-sun meltdown. No, it was more like a snowman-in-shade-at-34°F.  It had been lurking for several weeks. Things, little things, had begun to pile up when another snag with our long term insurance company turned me into a weepy, hand-wringing mess.

I don’t cry easily or often, but that day my eyes flooded as I stried to decipher the latest problem. As far as trying to deal with this particular issue, I’d bottomed out. I was doubly upset because I knew had to ask for help. For most people, I think, it is difficult to seek help from family or from anyone else for that matter, or even admit to needing it.

Leslie,  Martin and I were at their river place for the weekend. Les knew something was up and asked several times Friday evening if I wanted to talk. I stalled. “Nope, not yet, not now, not this evening, maybe tomorrow,” I said. But it was Sunday morning before I found my voice. I’d planned to leave by early afternoon to visit Peter, so if I were going to talk, it had to be then. “I’ve lost myself” I think I said, or maybe, more accurately, “I’m lost.”

“You. Are. Not. Getting. Alzheimer’s, Mom. You. Are. Fine.” Leslie reacted as she always does when I joke that I’ll probably have to move in with Peter soon.

“No-o, I know,” I said. “I am forgetful and addled a lot of the time these days, but this has been a really terrible year. The stress has finally gotten to me.”

“It has been terrible,” she agreed. And I thought, awful not just for me trying to bear up, or for Peter trying to understand, but for the rest of the family too, especially Leslie and Carolynn. They’re being brave for me. And strong.

I cringe when friends say how well I handle our situation, because a lot of the time I’m coming unwound. As always, utter panic grips me when I’m faced with bills to pay, numbers to compute, or when anything to do with financial matters smacks me upside the head. I’ve always fallen back on the excuse that I don’t do numbers. I do words.

I have no need to fret, but still I do. Luckily, we have good long term care insurance coverage, but unluckily, the company has penalized me for their own ineptitude more months than not for the seven years I’ve filed claims. Last summer, to deal with worsening, inexcusable treatment, I did what I do best: I wrote a letter and sent it to the company’s CEO. In detail and with exhibits, I described the hurdles I’d had to jump to get reimbursed. That letter got results and a phone call within hours. And within two days the nearly 12 thousand dollars owed were deposited to my account. For nearly six months there were no further hassles. Then it started again, and with other niggly things piled on too, the weight of a year’s worth of anguish bore down.

Slowly, but steadily, I began to melt

Leslie rolled her eyes, not at my fragile state, but because I hadn’t mentioned the issues sooner. “Mo-om, this is something I, we, can help you with. You don’t have to do this on your own. You’ve got enough on your plate!” She was right of course.

Well, now that I’ve exposed my distress here, I realize, once again, I shouldn’t not ask for help. Peter is doing as well as can be expected and I am fine as my daughter reminds everytime I buckle, 

When I left Peter yesterday and walked toward the door into the lobby, the alarm didn’t buzz. I punched in the code anyway. Nothing. I tried again then started to laugh at myself. The alarm didn’t go off because I have no ankle band to trigger it. I can just open the door and leave. Hm, not so funny after all.

Header: Snow storm Banff, British Columbia, August 29, 2010.

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Ninety-eight days and counting…

Ninety-eight days have passed since my husband was admitted to memory care, first for a month’s respite then, sadly, as a permanent resident.

Ninety-eight days with ups and downs as stomach-twisting as a rickety rollercoaster ride.

Ninety-eight days of uncertainty, confusion, frustration, anxiety and sadness. And that’s just my list. For Peter, I’d add to those anger, fear, anguish and longing.

Since those first heart-breaking mid-April days — I remember them as very cold, though they were not — the succeeding weeks have glommed together like cheap paper towels. There’ve been bad days and good, more lows than highs, a few baby steps forward, but more giant steps back. Silly me, I thought when someone else took responsibility for my husband’s safety, feeding and care, I would be able to catch up with myself. Not so. But it’s not about me anyway.

Within hours of his admission Peter had a meltdown that prompted a call from the evening charge nurse. Would I talk to him on the phone to see if that would help? Yes, I would. When that didn’t work, would I come to try to calm him? Yes, I did. It took several hours, but he was laughing by the time I left. Oh, I’m no hero, but I generally know which buttons to push. The staff had yet to learn.

Within seventy-two hours he’d gotten out of the facility, even as his ankle bracelet screeched while he walked through the main door. A maintenance man found him behind the building near an area surrounded by woods.

By the third, maybe fourth, week he started to acclimate a tiny bit.

The food, though nutritious, does not appeal to my picky husband. And showering with a female aide hovering nearby is not gonna happen. Without me to nag him about changing his clothes, he doesn’t. Instead of putting his things in the laundry, he hides them in the waste baskets and they’re gone forever. His slippers, leather scuffs, have vanished several times. Once I found the left one in a wheelchair parked outside another resident’s door. A few days ago I found the right one under a table in the shower room. But the left one had disappeared again. Peter isn’t necessarily to blame. Residents in memory care units are notorious for “stealing” from other residents.

Houdini could be his middle name.

Peter advises the cat on how to escape.

No, I really can’t blame him for any of this. No one can know what it’s like to be so confused and disoriented all the time. During his first 12 days there, he’d had relative freedom. But he was quickly moved to the “lock-down” wing after he busted out a second time. He left for an outing with Mark in the morning, but returned to a different room that afternoon. He didn’t even realize he’d been moved. And a few weeks later when we were finally able to move our furniture in to replace the borrowed stuff, he never noticed the change.

So, he’s safe under lock and key…touchpad and code.

Except he isn’t. My husband is an escape artist. He snuck out in my care, and when he wants to get out, he continues to walk out right past the nurses. For years Peter took Nobby to visit the residents where he himself now lives. He knew the code to get into the locked areas and how to get out. Served him well when he was the one on the inside. Frankly, I laughed when I heard that he remembered the code. He can’t remember names or places or much of anything at all, but numbers? His engineer’s brain still computes with reasonable ease. Then, too, he can read. There’s a sign on each locked door that says: Press for 15 seconds and door will open—fire code requirement.

It’s all about control.

From the first days he looked for ways to maintain control. Leslie and I set up his first room and made it as homey as we could. It was a large attractive room with a pleasant outlook. He very quickly rearranged things to suit himself—he hid the family photos, stacked books and puzzles in a corner, and put his tooth and hairbrushes in the little refrigerator that was left behind by the previous occupant.

Less than two weeks after he was moved to the more secure area, he started conjuring more creative ways to dominate his surroundings. He folds his clothes and conceals them in pillow cases, then secures them with his belts or wrapped in his shirts. Lately he’s wrapped everything, gift-like, in towels or sheets. He stashes handkerchiefs in the travel toothbrush holder he requested, not for his toothbrush, but to conceal whatever he could stuff into that little green cylinder. He hid family photos underneath a framed picture of his dad.

In more recent weeks he started taking the screens out of his windows. Almost every evening he disconnects his television, but two days ago he hid it. From himself or from me? I found it and hooked it up again, even though I always say I won’t.

Days 94-98 have been more troublesome. No matter howfrustrated I get, I know Peter is a hundred times more frustrated—he isn’t to blame for his shenanigans. I tell myself that while I bang my head against a brick wall.

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Pick up sticks? Who me?

On this frigid April day I never dreamed I’d have reason to write a sequel to my most recent post, “Between the sticks.” I expected to be writing about what’s going to happen tomorrow.

This morning I took my husband for his annual check-up with the dermatologist. Right away, Dr. J asked Peter if he’d been alright, had anything to report?

“No, I don’t have anything, but I’ll be she does, ” Peter said, nodding at me.  The doctor and his nurse laughed, as they always do, at Peter’s quick humor.

Dr J looked to me for answers. I told him about the several spots on Peter’s head, ears and arm, and some on his back. He nodded and began checking methodically. It was so cold in the exam room that the nurse hadn’t given Peter a gown. “Too cold,” she said, “doctor will just pull your shirt up in back to examine you.”

Turns out, Peter had put two shirts on — another cause for chuckles — so pulling them up was a struggle. Dr. J took one look at his back, one spot in particular, did a double take and said, “That’s a tick!

“A TICK?” I yelped.

“Sure is,” he said, as he asked  the nurse to fetch tick-removing supplies. He numbed the area, pulled the little bugger out, then drowned it in alcohol. Then he wrote a ‘script for Doxycycline Hyclate. “Better to be proactive and start this right away, than to wait six weeks for the lab analysis to finish,” he explained.

Lyme Disease is the unwanted gift a tick bite brings to people and their pets after they’ve feasted on infected deer and mice. I felt foolish for having seen the spot but hadn’t realized it was a tick. At least it wasn’t engorged and, really, it looked like the other two spots I’d noticed. Thank goodness they weren’t ticks as well.

Peter and I don’t need anymore stumbling blocks right now, but try explaining a tick and what its bite can cause is like explaining why pigs don’t fly to a two-year-old.

“No more picking up sticks in the woods,” I told him.

“Why?” he asked. I explained ticks live in woodsy areas. I explained that we give Nobby tick medicine every month to keep him safe, and Nobby doesn’t even have access to the woods.

“But I don’t go in the woods,” Peter said. “I never do.”

I rolled my eyes and didn’t try to explain further. Too much information is as bad, in our case, as no information at all.

 

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The second worst day of my life so far.

A policeman stood at the door.”Afternoon, ma’m,” he said. “Does your husband walk a big white dog?” I nodded. “He’s had a fall. An ambulance is on the way.” I grabbed the door to hold myself up and he added quickly, “He’s all right, but they’ll take him to the hospital as a precaution.”

“Come in and lock the door behind you!” I yelled, while I ran to turn the stove off, grab my purse, and dash out the side door. “Your dog is OK, too,” he said as he followed me through the house. “He’s right beside your husband. Another policeman will bring him home.”

Peter had fallen — face-planted — into a shallow ditch less than a block from our house. It had rained all day, the ditch was running. I’d fastened his GPS watch around his wrist before he and Nobby left.  Minutes later, I saw that he’d taken the watch off, defying me as he does, and left it the kitchen. If a passer-by hadn’t seen him and called 911 I would have had no way to find him when he didn’t return. It could have been worse.

But “worse” was yet to come.

A second policeman — the same one, incidentally, who helped find Peter last summer when he got lost — took me to the ambulance. He was already on the gurney when I climbed in behind him. He turned his battered, muddy face toward me and said, “Uh oh, now I’m in trouble.” The EMTs laughed. He kept them entertained all the way to the hospital.

In the ER he kept up his joking to the amusement of the various people attending to him.  When two young female aides left the room, one said, “Oh, he’s so cute!”

Mm.

His right hand suffered the worst physical damage — a wide, deep gash required stitches to hold his tissue-like skin together. Numerous other bumps and abrasions punctuated his upper body and knees, including a goose egg and black eye that bloomed later. As I gathered up his bloodied, muddied clothes he said, “S’OK, those will come clean.” Nuh unh, I thought. Not enough Oxy-Clean in the world to get that out.

Peter’s hands and face had been cleaned up by the time the ER doc returned to stitch his hand. “Oh, you’re quite handsome under all that dirt,” she said.

He grinned. “I’ll have to do it again then.”

Turns out, those few hours in the ER were the easiest of the next two weeks. He was understandably confused that Sunday evening, but the next day he awoke a different person. In the next few days he aged ten years.

From the start he remembered nothing about his fall, not that he would, and his few previous memories were erased too. He insisted all along that he didn’t hurt anywhere, though he must have, but his gait was stiff, and he shuffled as if he’d suddenly developed Parkinson’s. He struggled mightily to get out of his chair, even with a cane. He refused my help angrily, viciously, so unlike the man I married. He became argumentative and unreasonable in ways that he’s never been. He had no appetite, strange for him, and he slept soundly twelve or more hours a night. “I’ve nothing else to do,” he said. The Olympics’ coverage saved us.

Help dressing or undressing? “NO, I don’t need you.” Yet it took him twenty minutes to pull one sock off, and forty minutes, with my unwanted assistance, to get up the stairs to bed.

A physical therapist will assess him soon, there’ll be additional lab work to rule out other issues — the urine-analysis showed no UTI so the “hope” that spurred is gone. I may hire additional help, or may go to a nursing home solution. In the meantime, our sons-in-law have made the downstairs more accessible. Moving a bed down is a possibility.

Peter went from being a whisker shy of his eightieth birthday 18 days ago, to looking and acting as if he were ninety.

Still, not all news is bad news. Between the time of my previous post and now, he turned a corner. His dogged determination and bloody stubbornness, that usually makes me tear my hair, has instead helped him rally. He’s not back to where he was before, and never will be, but he’s so much better. But then, anything would be an improvement from the blood, rain and mud drenched man the ambulance crew hauled out of that ditch on February 11.

Header photo: In the ambulance, Peter regaled the EMTs with his patter . From the back, he looks unscathed.

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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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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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‘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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