Orange is the new faded blue.

Last January I vowed to spruce up Peter’s dreary grubby room. When he was admitted to memory care ten months earlier I did the best I could at the time, but knew I could do a lot better when I was less stressed and he was more settled. The look of his room was the last thing on his mind during those first unsettling weeks…months. And really, just coping was all either of us could manage for a long time.

Last week, I finally “spruced” aided capably by housekeeping and maintenance personnel.

An efficient young woman had already mopped the floor—even behind the furniture, mind you—wiped down doors, cleaned splotches off walls and washed windows and screens by the time I arrived. All she had left to clean was the bathroom. She held up the grimy blue bathroom wastebasket. “Do you want to keep this?” she asked with a shudder.

“No, it was here when he moved in,” I said.

“It’s gone!” she said.

Then two cheerful maintenance men, Smothers Brothers types, arrived to shuffle the furniture around. They approved my plan and the new dashes of color. “Needed a woman’s touch in here,” one said. I chuckled. The old look was this woman’s touch too, though lacking any appeal whatsoever. When they finished, I tidied Peter’s things and cleared the clutter, so pleased to make good on what I’d pledged to do so many months ago.

What an enormous difference the bright comforter, new Mickey Mouse poster and change to the furniture arrangement made. The orange paisley comforter replaced one I’d bought nearly 40 years ago for eighteen-year-old Leslie. That faded blue relic was way past saving.

I didn’t expect—and didn’t get—a reaction from Peter to the room’s new look when he and Mark returned from lunch. He never was one to notice little things I did around the house—husbands usually don’t—but I felt better for having accomplished my January goal.Sad to say, another goal dating from September remains unmet. I’d thought my plan to revive the gardens outside the area where Peter and 15 others live was a done deal. Flowering shrubs, evergreens, scented plants and bulbs were proposed for planting this autumn to head-start growth and be ready for springtime bloom. Unfortunately, that project is on hold until the new year, not because I didn’t fight for it as much as I dared.

Next time I visit I’ll take the tulip bulbs saved since Peter’s February birthday, Leslie and Martin’s gift to him. We’ll plant them in a big pot to brighten the view outside his window come March. There’s more than one way to get a head start on spring.

 

Header photo: Bright new look to Peter’s room.

 

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

 

Seize the day!

It was more than a year after I placed my husband in memory care before I found a new normal. I’d skimmed across the days, weeks, months in a daze, I now know. Friends said I was doing well, but I knew I was barely hanging on.

But at last, mama’s got her mojo back. Carpe diem.

Almost from the start, I had concerns about certain aspects of Peter’s new life. Nearly 18 months later I realized that the route to change was for me to Do Something.

I made an appointment to talk with one person but ended up in the office of another, a nice young man who had the authority to affect change. When I sat down with him—I’ll call him Mr. L—I had two pages of notes ranging from serious matters like Peter’s refusal to take his meds or take supervised showers regularly to other, superficial items. He lay my top priorities to rest quickly. Weeks prior word had reached Mr. L’s desk that twice I’d found pills lying on my husband’s table. Steps were taken. Peter no longer gets away with his tricks to hide meds, although I’m sure he still tries.

My complaint that two showers a week aren’t enough for anyone, anywhere, anytime, much less my often “fragrant” spouse, was addressed. It’s still a battle for whoever has to convince him, but it’s happening. Who knows, maybe Peter will come to accept his new normal.

When I visited recently, an aide told me Peter had refused to shower that morning, as he had on Friday. “I’ll talk to him,” I said, thanking her for telling me. While we had our tea I told him how upset I was about his refusing showers. He looked like he’d been caught with his hand in the cookie jar, but he continued to insist he didn’t need to shower “all the time.”

I persisted. He held firm. Finally I suggested we play dominos and the best-of-seven winner would make the shower decision. Peter lost. He went to the shower room willingly. Afterwards, he came back to his room arms raised, hands clasped above his head. He looked good, he felt good and he he’d made me happy. “Domino effect” has taken on new meaning. I might have to show the aides how to play the game!

Peter always liked to garden.

Next on my list was the garden that surrounds the wing where Peter and as many as 15 others live. “The front of the facility is very nice, well maintained, welcoming,” I said to Mr L, “but that garden is pitiful. The raised bed is full of weeds and mint. The area is not inviting at all.” He agreed. I also suggested painting the ceiling of the gazebo blue. That struck a chord and Mr. L added that the porch ceilings needed paint too. Yes-s.

Then I mentioned my two occasional gardeners—they help me at home—and asked if it would be OK to contact them to see if they would be interested in a garden overhaul. Yes and yes. Before long they’ll start work on their plan that includes brilliant perennials with compelling scents—lavender, lilac, viburnum—and although fall hasn’t even started, I can’t wait until spring.

The tall black garden fence is meant to contain residents who try to escape, Peter among them! I proposed murals on some fence sections to make them less prison-like. Murals are on the radar with two potential artists lined up.

Peter ponders his next domino move.

When I asked about a table and chairs for the gazebo, snap, they appeared a few days later. I hope other residents and their families enjoy sitting there as much as we do.

How about enlisting student volunteers from local schools and the university to visit with residents or plan entertainment? I asked. Maybe youngsters could write notes to them? Would young children from day care facilities come to cheer the residents? I wondered. Worth trying, Mr. L thought, and before long he’d made some calls and ideas are flowing. Peter loves little children and I imagine other residents would enjoy little children and their antics, too.

My list grows, even as I sit here tweaking this post. At least now I’ve Done Something about things that can be remedied with the right sources and not too much money. I’ll probably make some enemies in this process, but it wouldn’t be the first time. I’m not called Mother Tough without reason!

Header photo: Peter asks if he can help when the garden rehab starts. “You can sweep up every day,” I offered.  He nodded. “I’m good at that,” he said.

 

 

 

2016 National Society of Newspaper Columnists’ contest finalist. 

Shower power.

How I pity the aides who try to get my husband to shower. His jovial personality disappears when he really Doesn’t. Want. To. Do. Something! And he really doesn’t want to be prodded towards the shower by a female aide, or for that matter, by a male aide. I’m reasonably sure he isn’t the only male resident who balks. It’s got to be embarrassing, humiliating, to be led off to the bath room as if they were little boys.

A year ago, early in Peter’s stay in the memory care unit—the best facility around I might add—I complained, rather loudly, that my husband needed a shower. “He stinks!” I announced. Another day I asked if I could try to get him to shower. The answer was yes and I was successful. He stayed a long time and all I had to do was be there. I didn’t help him wash, didn’t help him dress, but I did tell him how “fresh” he was afterwards. He grinned as if to say it was his idea in the first place.

Unfortunately, showers are only scheduled twice a week, for the men at least. Not often enough for anyone, and especially not enough for my pungent husband at any time and certainly not in the heat of summer. Oh I understand there could be staffing issues and I readily acknowledge my husband is stubborn. But good hygiene is absolutely necessary, in my book, clean clothes too.

Peter’s dug-in heels are contrary to the man who sometimes showered three times a day when he was working in the yard. He’d mow the grass, shower, put on clean clothes, go back out, do another task, come back inside…repeat…repeat….

I had quite a laugh last week when I heard that he had two showers on Tuesday—one in the morning overseen by one aide, the second in the afternoon with help from a different aide who didn’t realize he’d already washed and put on clean clothes. Two showers, two changes of clothes, one day! Woo hoo! Apparently, he didn’t object either time and, because he didn’t remember the first one, he didn’t fuss the second time. Blessing disguised.

Friday, the other shower day for the men, an aide convinced him to shower again. When I picked him up at five to go out to eat with Leslie, Martin and me, not only was he clean, but he was wearing clean trousers and the blue golf shirt Leslie gave him for Father’s Day.  Win. Win. Win.

 

 

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

 

Briefly.

My husband was a cyclist in his day, not a pro, but darned good even into his late sixties, before Alzheimer’s commandeered his brain. Now 81, he hasn’t ridden in years, so when I got a text message from his Tuesday helper that he’d ridden half a mile at level two in the fitness center, I whooped.

YAY!

Later that same evening there was a second text to tell me that the day had been a good day: “He told me he knew he lived there now and the place was okay. He had a clear moment while we had tea outside the cafe.”

With tea came clarity.

I’d waited one year and four days to hear those words. Some caregivers never hear them, so I count myself lucky.

Peter has seemed more settled in recent weeks, and although I know he doesn’t remember that day or that brief bit of conversation, the thought is tucked in there somewhere amidst those damnable amyloid plaques and neurofibrillary tangles.

His good day made mine.

Header: My May flowers flourish thanks to April showers.

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

 

Always laugh when you can.

Thunder woke me this morning. A grim start to an anniversary, although this isn’t an anniversary to celebrate, no. A year ago today I had Peter admitted to memory care. Although he hasn’t been able to remember the day, the month or the year for a long time, I think, if he could remember April 18, 2018 and if he could express himself, he would say it was the worst day of his life.

I do remember and I shudder, but I don’t dwell there.  That’s both good and bad, I suppose.

I’m glad to say that Peter is doing well, better than most, I think. The problems he had those final months at home—falling, getting lost, increasing confusion, hallucinations, anger— are gone. But cured? Of course not. Living apart from the heightened tension and stress at home as I tried to cope with our situation helped both of us enormously.

Settled in now, the staff and residents love him and his silly pranks and goofiness. At last week’s Prom Peter was, as he always has been, the life of the party.  He thanks me and hugs me the way he used to do every time I visit.

My husband’s single-minded determination to problem-solve and his innate sense of humor have carried him through these very rough twelve months. It’s as if he grits his teeth mentally and reckons with how his life is now. He rarely asks when he can go home, but when he does I redirect as best I can, then watch as he turns inside himself, furrows his brow and deals with the knowledge.  After a couple minutes he shakes his head, smiles sadly, and says, “Oh well.” And that’s it. He’s dealt with it.

Peter thrives in care as much as anyone who has a dementia can thrive. Perhaps he thrives too much! His entire adult life he weighed 145 pounds. He loved to boast he could still wear clothes he had when he was twenty. He’s now a fraction under 150 and he’s popped the buttons on his trousers and shirts!  My formerly skinny husband has love handles!

Over the past year I’ve posted about the tough times, and there were lots, but if I were to count, I think there were more light-hearted posts than not. I want to believe that.

Neither of us would have gotten through the year so well without laughter. If laughs were available in a pill, they might be a cure for dementia. 

[Elaine Eshbaugh, PhD, Associate Professor of Family Services & Gerontology at the University of Northern Iowa, writes a hugely helpful blog. Her April 15, 2019 post, What I think caregivers… need to know…”, was exactly what I needed to read this week. Do follow her!]

Header photo: This dogwood lightened my mood as I walked Nobby this morning after the rain.

2016 National Society of Newspaper Columnists’ contest finalist. 

How lovely are thy branches?

The Christmas morning clatter—save the boxes, keep the ribbon, recycle the tissue, read the directions, where’s the receipt, the vac is clogged—is a week in the past. As I write, the new year is just hours away.  I can’t say I’m sorry to see the old one out.

This dwindling year has been an annus horribilis, as Queen Elizabeth II defined her 1992. She referred to her children’s marital follies and questionable clandestine issues, as well as the costly fire in Windsor Castle, one of her favorites.

Even though this has been an awful year for the Clarke family, we’ve found bright spots to keep us laughing. The house didn’t burn down either.

One of Peter’s new helpers, fascinated by his natural affinity with children, observed him interacting with a little boy. They stood on the fringe of a crowd waiting to see the Nutcracker ballet. I wasn’t there but I’m sure my husband’s eyes twinkled while he made silly faces and crouched to the two-year-old’s eye level. More than once, the boy announced loudly to anyone else in range that this, pointing to Peter, was his New Best Friend.

When I heard the story I smiled in spite of myself and my fretting.

For months I’d wondered how, or if, I would cope, how Peter would do, how would we all manage during the holidays. But, miraculously, my husband had settled into his new “digs” and no longer asked, “Is this my room?” every time I led him inside.

With a lot of propping up from family and friends, I spun through Christmas with more good cheer than I’d thought I could muster. I dashed and twirled and muddled, but in many ways, the week was actually one of the best we’ve ever had. The eight of us kept him busy with meals and snacks, card games, walks, movies, billiards, and chatter. Not that Peter talked much, but he smiled, chuckling, as he listened. If he had been able to channel my dad, my husband might have said, “Well, someone has to listen.”

Header: In 2017, Peter lifted a dug-up pine to bring home with help from Leslie who wore red and white striped camouflage.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

The worst weeks of my life so far.

I still remember how wrenching it was to drop eleven-year-old Carolynn at her first sleep-away camp. And I still remember taking Leslie to college, moving her in, and then watching her walk away from me without looking back. Those days still grip my heart.

If you’ve experienced similar days, similar pain, I can tell you they were nothing, nothing, compared to the day you deliver your spouse to a memory care unit for what is supposed to be a month’s respite for both of you.

My husband’s long, long journey from “mild dementia” to “can’t rule out Alzheimer’s” to “probably Parkinson’s, too, with Lewy Body disease” has lasted 15 years. Fourteen-and-a-half of them relatively easy, I now realise. My panicked uncertainty during the time since February when he had a bad fall, followed by weeks of rapid decline have been exhausting, wearing, and sad for me and the rest of the family.

Not so for Peter! The one good thing about dementia — any of the dementias, I suspect – is that the afflicted doesn’t remember anything from one minute, one second, to the next.

After those bleak early February days, I decided to try respite care because I could not carry on without a break from the constant crises. No matter how many times I explained to Peter that he’d be in respite care for a few weeks — a therapeutic lie meaning “at least a month” — he never grasped it. I based my explanation on the number of times he’d fallen since February. He had no memory of that, even with photos as proof, nor of any of his recent falls. “I can’t lift you,” I said, “can’t take care of you when you’re like this.”

Leslie and I had already checked local respite care. The best choice was obvious. Even so, Peter and I coasted along for another few weeks or maybe a month. Push came to shove in April. Peter fell again while we walked Nobby one evening. I’d convinced him to hold my hand and use his cane with his other hand when, suddenly, he smashed face first onto the street. He didn’t have the strength to get himself up and I didn’t have the strength to lift him. I’d been so diligent about keeping my cell phone with me, but we’d just come home from a nice dinner out, and my phone was still in my purse…on the kitchen counter.  Luckily, a young woman came by and helped lift him, then offered to get her car to take Peter home.

Not even seconds after it happened, nor at anytime since, did he remember falling. It was time.The hours, days, weeks, months whipped by so quickly since February while I struggled to keep things “normal.” Yet, the same period oozed too. Years could have passed while I was stuck in a molasses swamp.

I wouldn’t wish any of this on anyone.

The awful April day when Peter, Leslie and I met with the facilities’ director of nursing, the administrator and others is a blur. Though my husband didn’t understand what was going on, he did know he was the center of discussion and he hates that. He understood just enough to know he didn’t like what was happening. His Mt. Rushmore persona was apparent. I reached for his hand, but he pulled away angrily.

Between then and five days later when he was admitted, I prepared for his move as if I were taking him to college or to camp. I bought him new underwear, new socks, tubes of toothpaste, cheery yellow sheets, and bright blue towels. I packed favorite picture books about England, pictures to hang on the walls, photos to put in a drawer, his special tea and coffee mugs, jigsaw and crossword puzzles, pencils, pens and paper, Sudoko books. I washed and ironed his shirts and trousers and polished his shoes.

Leslie and Martin helped with the move-in. Stoney silence from Peter as Leslie and I gabbled and tried to lighten the mood. Martin took Peter to lunch while Leslie and I finished making the room as homey as possible. We added finishing touches the next day. Peter was almost jovial. He managed a few silly jokes and we breathed sighs of relief.

By the time all the paperwork was completed two more days had passed and the meter was running. A private room in the best facility around doesn’t come cheap. Thank goodness for long term care insurance. When I finally took my husband to be admitted, he was practically mellow. Whew.

Ah, but that was only day one. A Tuesday.

Header: Peter in the garden surrounding his new home-away-from-home. The fence, he has since explained with a twinkle in his eyes, is climbable!

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

Be careful what you wish for.

Faithful readers will know that I’ve carried on for months about my husband’s constant abuse/misuse of his PAL Search & Locate GPS watch. Almost from the first day six months ago he figured out how to get it off.  He used brute strength to force the supposedly secure clasp to release.

“Ooo-o, you are strong,” I might’ve said, batting my eyes to make him laugh at my use of his old joke. But I didn’t say it, nor did I laugh.

I nagged endlessly, trying everything I could think of to get him to leave the darned thing on until I took it off. He wasn’t bothered by how much it cost nor that I’d had to order a new clasp. When I explained I just wanted to keep him safe, to have a way locate him if he got lost again, he tutted and argued that he was safe and he did not get lost.

By chance, the situation resolved itself. One evening, just after the holidays, I noticed that he had not only removed the GPS watch, he’d also removed the watch I’d given him for Christmas several years ago. Both were on the table beside his chair. I picked them up, put the high tech one in the charger on my desk, and lay the trusty Timex nearby.  Then I forgot about them.

The next morning when he was getting ready to take Nobby for his walk, I remembered. Without really thinking about it, I put the GPS one on his left wrist. He didn’t grumble at all, nor did he ask about his “real” watch. He wore his GPS “pal” all day, and in the evening he held his wrist up for me to remove the thing properly.

He’s done that ever since. He doesn’t remember his other watch, and doesn’t seem to mind wearing the chunky one.

A frustrating problem solved serendipitously.

You’d think I’d be happy or at least relieved, but I’m not. He’s forgotten what was such a  monumental grievance for both of us. Another step down the down staircase.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Found: missing ho, ho, ho’s.

As the days get shorter, so does my husband’s ability to remember anything — anything — for longer than a few seconds. My ability to laugh through tears has faded with the waning year. Peter’s downward skid is out-of-control, a luge slider run amok.

Even though my journalistic conscience has prodded me to write a post, I’ve been too tired, exhausted really, to come up with anything that would fit my charter: to search out laughs to ease the dementia-clouded days.

Last week, finally, some blog-worthy chuckles presented themselves. I’d combined a trip to Roanoke for our annual  Christmas lunch with having my car serviced at the dealership. Turned out to be a very long day. We did a little shopping, had a lovely lunch at Montano’s and even shared a slice of carrot cake for dessert. Afterwards, we headed to the dealer for a recommended oil change and a quick tweak to my car’s “Eyesight” feature.

“Quick” it was not. What I thought would be an hour’s wait turned into more than three. It was a comfortable enough, pleasant room with free snacks and a TV. I’d taken a book. Peter huffed and wiggled and made endless cups of coffee.  After some time, he asked, “What are you here for?”

“Just service,” I said.

“When will they call you in?”

“What do you mean?”

“When will you see the doctor?” he asked, waving his arms at the other people waiting.

“I’m not waiting for a doctor,” I laughed, “my car is getting checked!”

“Well I didn’t know,” he mumbled, adding, “then why are we waiting?”

“Because we need the car to get home,” I said. “Long walk from here.”

He went back to the old magazine he’d looked at several times. Before long, he asked, “What are you here for?”

I laughed again, explained again, and then again.

Shave and a haircut.

The next day I ginned up a “therapeutic fib” to get my reluctant husband to a barber for a much needed beard trim and shave, plus attention to anything else that needed doing from his neck up. (The day before, I’d tried to lure him into a barber near Montano’s, but he dug in his heels at the door like a five-year-old going for his first haircut. He would not budge.)

This day I made an appointment.

I faked a note from Leslie to encourage Peter to cooperate and asked his Thursday helper, Mark, to give the card to Peter and say Leslie wanted him to get spruced up — he’ll do whatever she tells him to do. Mark endured the barber shop trip in my stead and took photos for me.

Pete spiffed

Afterwards Peter looked quite spiffy with his beard trimmed neatly, neck shaved, eyebrows tamed. I praised him lavishly, but he was confused. “What are you on about?” he asked, irritated.

“Your hair! Your beard! You look terrific,” I said.

He had no clue why I was gushing — he hates gushing. For all his grumbling, he’d dozed right off in the chair and awakened well groomed, without even knowing anything had happened.

 

 

Header: Peter sleeps in barber’s chair.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

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.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

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