Aside

‘To-mah-to!’ ‘To-may-to!’

Peter looked very guilty yesterday when I asked about the green tomatoes basking in the sun on his windowsill. My husband doesn’t like tomatoes, ripe or not, although he did eat some fried green ones accidentally one time.

“Tsk, you picked these from that raised garden outside, didn’t you?” I said. I pictured him skulking along next to the tomato plants that had languished all summer in a too-shady spot. Some resident—maybe several residents—had planted not only tomatoes, but cucumbers, squash, strawberries, and a petunia.

Peter looked like a naughty little boy. I could hardly keep a straight face. “Whoever planted them,” I added, “won’t get to eat them.” I threw in an extra “tsk” for good measure.

“Well! They can have them,” he said, shuddering, “I don’t even like to-mah-toes.”

 

2016 National Society of Newspaper Columnists’ contest finalist. 

Right or wrong? Left or right? Here or there?

Thoughts about my ability to live in this new world where I’m practicing to be a widow rattle around in my head like stray coins clanking in the clothes dryer.

When will I, or will I ever, sleep on the other side of the bed. When will I, or will I ever, stop walking around the bed on my middle-of-the night treks to the bathroom, when I could just roll out the left side?

Will I ever sit on the other side of the kitchen table where Peter always sat?

Will I ever be able to clear the cedar closet of the suits he wore to work (once he realized he had to wear a suit to work) or the Burberry all-weather coat he never ever wore, or the cowboy boots we spent hours shopping for in Santa Fe and that were too nice to wear?

And will I ever stop being his caregiver?

The answer to all the above is, probably not. Anyway, Peter isn’t gone, he’s just removed from the life we lived together.

It just wouldn’t be right to sleep on the left side of our bed, or to change my path to the bathroom, or to sit on the opposite side of the kitchen table. And now, even though he’s in a care facility with round-the-clock coverage, his care really is still in my hands. Anyone in care or in hospital needs an advocate because the carers, the nurses, the aides can’t be everywhere, every time, all the time.

But that’s neither here nor there.

I have no choice but to be Peter’s caregiver as long as he lives—or as long as I do—and I wouldn’t have it any other way. I know, if our positions were reversed, he’d take care of me. Oh, he wouldn’t bring me tea and he wouldn’t fluff my pillow, but he would make me laugh.

I’ve learned from my husband how to laugh at myself and life and him, always him.

 

2016 National Society of Newspaper Columnists’ contest finalist. 

‘Aha!’ she said.

Anyone who really knows my husband knows that he has a thing for Mickey Mouse. His obsession stemmed from an outburst nearly 50 years ago when he was a young engineer from England—the great European “brain drain” he said—hired to work for then almighty General Electric. He’d established his quirky personality early on, so he thought nothing of going to his first management meeting wearing an open shirt, no jacket, no tie. He was told in no uncertain terms that he would, hence forth, dress appropriately—necktie, jacket.

The legend is, he returned to his cubicle, slammed down his GE-issue leatherette binder and bellowed, “This is a bloody ‘Mickey Mouse’ outfit.” His colleagues, many of them young hires from Europe too, ran with that. Someone left a Mickey Mouse card on his desk the next morning before he arrived. Just. The. Beginning.

His collection grew to hoarder proportions, especially after we moved to this house which has a tiny room he claimed. At least I could shut the door to keep the big-eared rodents contained.

Last April, in order to make his new new residence more homey — “homelier” his English friends would say — I put  family photos and  English memorabilia around. Wrong. He hid most of the photos, tore some to bits and generally stripped his room of anything personal.

Lately he’s had a lot of way-down days. But during one visit two weeks ago I noticed several female residents had baby dolls to cuddle. Aha! Mickey Mouse could help. Yes!

A plush Mickey Mouse, about the size of a six-month-old infant, was in Peter’s collection. I snuck the little guy into his room when he wasn’t looking and tucked baby M under the bed covers. The following day I asked about the suspicious lump. Without a word, Peter adjusted the covers so I could see.

Every day since I’ve taken some small thing from the Mickey archives—a simple puzzle, a magnet, the new Life magazine’s celebration of Mr. M’s 90th birthday—and left them for Peter to find later.

During my Sunday visit I snuggled Mickey on my lap as if he were a “real” baby. Peter’s eyes twinkled. “He’ll be all grown up soon,” he said. shaking his head.

I played along. “Yes-s, he’ll go away to college, he’ll meet a girl….” What could we do but laugh at our own silliness?

Header: Mickey snug in Peter’s bed.

2016 National Society of Newspaper Columnists’ contest finalist. 

New broom sweeps even better.

Peter clears the litter from the porch.

A nurse sat at the end of the hall when I approached my husband’s room yesterday. “Peter’s outside,” she said as she walked toward me. “He’s had a bad morning…very out of sorts….”

I held up the new broom I’d brought. “He was so thrilled to be able to sweep up grass the other day,” I said, “but he complained he needed a bigger broom. This ought to do it.” She nodded her head and said he’d told everyone that he got to sweep.

She added that she’d just given him his morning beer. I suggested tactfully that a cup of tea usually works better when he’s upset. “Beer with his lunch would be a better idea,” I said. She went off to change the orders—PBR with lunch, Guinness after dinner.

Outside, I saw him at the far end of the garden. When I yelled his name he looked up and laughed. “What are you doing here?” he asked, trotting in my direction. I brandished the new broom. “What’s that?” he  asked.

“You said you needed a bigger broom.” He grinned as if it were the best present ever. “This space really needs to be swept,” I said, as I nudged him toward the porch where we often sit.

Well, that’s all it took! He went right to work sweeping leaves and twigs off the cement and even whisking the seat cushions clean. He also managed to polish off his beer and the coffee I’d brought, before he tracked along the sidewalk with that bright red broom. He was in a much happier mood when I left for my dentist appointment, and so was I.

This morning I learned that Peter’s down mood had returned in the afternoon. Again he asked over and over why he was there? When I got home from the dentist, probably about the same time he had the second meltdown, I looked around at the mess “Florence” had made and wondered how I’d cope on my own without my champion sweeper and all that autumn brings. But my thoughts are selfish compared to those my husband is trying to sort out in his fractured mind.

 

Header: Bittersweet is lush this year.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Old broom sweeps clean enough.

For several days last week Peter was in a real funk or “gray space” as Elaine Eshbaugh, PhD explains in “Sitting in the gray in dementialand.”  My husband would not be, did not want to be, soothed. Furthermore he didn’t want to be “there,” although he wasn’t sure where “there” was. “If you like it so much here you should move in and I’ll find someplace to go,” he snarled. The smiling granddad I wrote about here had vanished “into the gray.”

No caregiver who has made the heart-wrenching decision to put a loved one in a nursing home’s memory care unit ever wants to hear, I want to go home. All I could offer was, “I know you don’t want to be here. I don’t want you to be here either.” At his murderous glance I added,”But I can’t take care of you at home any more. This is the best place for you, the best place around.”

Then I made him a cup of his favorite Typhoo tea sent from England by a longtime friend.

Today was different.

When I tapped on his door about 10:30 this morning he had his winter jacket on. “I’m just leaving,” he said. When I asked where he was going, he admitted he didn’t know, but pointed out the window. “Just look at that,” he said. The sidewalk in the garden was grass-covered from recent mowing job.

“You want to sweep that up, don’t you?” I asked

He nodded. “I don’t have a broom though.”

Well, that I could fix. I asked a nurse if there was a broom I could use. She found one and out we went, Peter with the broom, me carrying his wastebasket. I fashioned a piece of cardboard into a make-do dustpan while he swept. He grumbled about needing a bigger broom and added that he should get paid. I laughed and he did too. Around the other side he pointed at the padlocked gate near the gazebo. He wanted to know if anyone used the gate. I don’t think so, I told him. As if he were a mischievous ten-year-oid, he swept a little pile of leaves and grass under the gate with a flourish. Maybe you had to be there, but we thought it was very funny.

Not so very long ago I complained about him sweeping our terrace constantly, even though I understood. He needed something to do, to be useful. Today I was overjoyed to see him so happy…doing something…being useful.

It’s the little things.

 

Elaine Eshbaugh, PhD is an associate professor of Gerontology and Family Studies at Iowa State University. Her blog, “Welcome to Dementialand, Living, Loving, and Laughing through Alzheimer’s and related Dementias” offers helpful advice laced with her own brand of humor.

Header photo: Lonely little petunia in a green tomato patch.

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Novel thoughts.

From 2009-2015 I worked at writing a novel. In that time I managed to complete drafts of sixteen chapters. Not many for six years, but the writing group I belonged to encouraged me.

Then I ran into a writer’s block.

I’d never written fiction and hadn’t a clue where I was going with the book I’d finally titled But Why? What I wrote during that time seemed more like journal entries, a diary maybe, that began when my protagonist, Isabelle, was nine. Though fiction, my book-to-be doesn’t read that way. No conflict, no tension, no real plot. Stymied, I quit and decided to try writing a blog, my first. “Wherever you go, there you are”  attracted readers, plus a number of repostings on the Erma Bombeck Writers’ Workshop site.

There was another block too, a big one. It lurked behind dementia’s sweeping skirts. During the years I’d tried to write about Isabelle’s innocenceI acknowledged what I’d known all along—my  husband’s dementia diagnosis was actually Alzheimer’s disease (ALZ).

I began to stumble along a twisted path studded with potholes, hairpin curves and detours. Writing a novel, or writing anything at all, was no longer a priority. In fact nothing was prioritized except Peter. He was, and is, priority one. That previous sentence makes me sound as if I’m Clara Barton and Mother Theresa rolled into one. I am not. I’m short-tempered, frustrated, exhausted, confused, stressed, sad and angry a lot of the time, sometimes all at the same time.

What about an Alzheimer’s conflict in my novel-to-be? Why not?

When I accepted that Peter had ALZ, I felt as helpless as a leaf blowing helter-skelter in a storm. Writing and finding the right words is my therapy. Would another blog help? That thought morphed into this blog. The writing has helped me, and my words have helped others I’ve heard.

From the beginning of this long awful trip I read everything I could find on the types of dementia. Dementia isn’t a gentler type of Alzheimer’s. No, dementia is an umbrella word that covers several diseases, Alzheimer’s the most widely known of all of them. That’s noteworthy because ALZ, while not contagious, is an epidemic, the sixth leading killer in this country after heart disease, cancer, chronic lower respiratory disease, accidents and stroke. Of these, Alzheimer’s has no cure.

ALZ affects families in ways that other killer diseases do not. The loved one’s life is a chiaroscuro of lights and darks, sun and shadow, instant transformations from the former self to the self that is, in that moment.  There are drugs that can help—namely Namenda and Aricept—and various prompts to make daily life more tolerable for patient and caregiver: increase exercise, do crosswords, eat right, get enough sleep but not too much, call-the-doctor-in-the-morning, eat-an-apple-a-day, cross your fingers.

What works best for us is laughter, always the best medicine. Admittedly, it is extremely difficult, if not downright impossible sometimes, to find a reason to laugh. Luckily for us, Peter’s sense of humor hasn’t deserted him…yet. When I visited one day I set out a 100-piece jigsaw. We fiddled with this piece and that in the mostly red, black and yellow puzzle. Peter chortled when, predictably, clumsy me knocked the sorted piles to the floor.

“A place beyond words: the literature of Alzheimer’s” is an excellent piece by Stefan Merrill Block, The New Yorker, 8/20/14. The article both jolted and vindicated me in ways other books and articles I’ve read on the subject have not. https://www.newyorker.com/books/page-turner/place-beyond-words-literature-alzheimers

Header: Me stealing time to write early in the morning 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Lemons? Squeeze!

Just when I thought I couldn’t make any more lemonade from the lemons that landed in my juicer, encouragement from casual acquaintances has rejuvenated me.

All along, family and longtime friends have been supportive as Peter and I struggled along the hellish road paved with plaques and neuro-tangles. He is largely unaware that support is even needed, but I’ve welcomed every kind word, every smile, every hug, note, email or call. I’ve been surprised—no, amazed—by the helpful ideas and kindnesses from the pharmacist, Peter’s helpers Mark and Bill, the courtesy van driver, the mailman, the waiter, Nobby’s groomer, and from my daughters’ friends and colleagues, many of whom I don’t know.

Even though their main concern is for Peter, nearly all ask how I’m doing. Do you mind coming home to an empty house? one asks. Are you afraid in the evenings, asks another. Is it hard to eat alone? someone else wonders. How do you do all the things it took two of you to do before?

Actually, no, I don’t mind coming home to an empty house, no, I’m not afraid in the evenings, no, I don’t have a problem eating alone, and in reality, I’ve been taking care of the things we shared for a long time. Oh, I wish I didn’t have to deal with the taxes, or take care of the bills, or remember to get gas for the car and the lawnmower, or decide how much or how little to buy at the grocery.

My husband’s slow, ten-year decline forced me to get used to the idea that there was no way back. These past five years the downward tack has been more rapid and way worse.

In truth, I’ve been practicing to be a widow most of my adult life. I was a divorced mom with two young daughters in my thirties. Peter and I were in our early forties when he finally agreed to marriage—he dragged his feet for seven years. We’d never lived together, nor even in the same town, so marrying again took some getting used to for both of us. We were both married to GE too. He traveled a lot, but my job was local so I came home every night and walked the dog. Fred didn’t talk much but he was a nice companion.

Because I retired 10 years before Peter, I was still on my own most of the time. His travel schedule never eased, but I was fine working from home with Fred and new puppy named Decker for company.

But, when Peter retired he hadn’t forgotten I’d promised we could move back south. And suddenly we were together All The Time. No longer could I have what he dubbed “twigs and berries” for lunch, or pasta tossed with black olives, fresh tomatoes and fresh Parmesan for dinner. No, it was meatandpotatoes every evening. Home Together.

He spent days cycling, woodworking, gardening, puttering. I continued to read, write, garden and, a newfound luxury, lunch with friends. If we were home at noon, he worked a crossword puzzle while I read a book. At dinner we talked a bit, but chatters we are not.

Now, again, we don’t live together. I know it’s easier for me than for him. I’m in the same place—home—while he’s in a strange new environment that will never feel like home no matter how hard I try to make it seem so. He’s still as solitary as he ever was and so am I. The upside, and there is one, we talk more now than we ever did, we laugh as much, and the “lovey-dovey” stuff, Peter’s term, has returned. I visit four or five days a week, and I’m greeted with bear hugs and squeezes. Even though the situation isn’t good, and the reason for it is horrible, it isn’t as bad as it could be.

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Channeling Henry VIII.

This bit of gallows humo(u)r is, well, an interlude in our own Shakespearean tragedy.

Sunday’s visit with my husband was difficult, especially since I’d gone to see him after a pleasant few hours’ brunch with my friend Karolyn. She and I had empathized and giggled over our similar lots in life. When I left I was in a good mood, but when I arrived at the facility where Peter lives and headed toward his room a nurse coming towards me shook her head. “Peter has done even more packing up this time,” she said.  And good morning to you too, I thought. I let that slide for the moment.

Peter was in the dining area, just finishing lunch. He did his usual surprise act when he saw me. “Oh, it’s you!” he said. “Where did you come from?”

“Out there.” I pointed to the entryway. “Are you finished? Have you had dessert?” There was still food on his plate, not surprising since he doesn’t like the meals.

“Oh, yes” someone said,”he had a scone with a beer in one hand and a cup of coffee in the other.”

“A scone and a beer? What would your old granny say?” I asked. He shrugged and gave me his exaggerated fake wink.

It was a pleasant day so we went outside to the gazebo. After a few minutes of idle chat, I took a deep breath and prepared to have another Talk with him. A month ago he’d asked if he would ever get out of “this place.” Since he’d  asked directly I answered as plainly as I could hating, hating, that I must do it. I explained again that because of his falls, plus his wandering and getting lost, I couldn’t take care of him at home anymore. “I can’t lift you when you fall,” I said, “and I couldn’t always find you when you got lost.”

“But I don’t fall,” he said, “and I’ve never gotten lost.” I raised my left eyebrow. “Well, I don’t remember if I did.”

“I know you don’t remember, but that’s part of the problem. But you can’t help it.” I put my head on his shoulder and patted his knee. “I know you don’t want to be here and I don’t want you to be here either. But this is the best answer to a bad situation.” He was quiet. Tea, I thought. A cuppa cure-all. “Let’s go in and I’ll make us a cup of tea,”

I was shocked when I opened the door to his room. The nurse was right. He’d created even more mayhem than usual. This was the day same he’d gone so far as to hide his tv set. I bit my tongue to keep from saying what was on my lips. “I’ll make tea after I tidy up,” I said.

“I’ll help! What shall I do?” he asked. I nodded towards the bed where he’d stacked every single thing that that would fit. “I’ll put these clothes away, shall I?”

“Good idea,” I said. He hung up his shirts neatly, making sure they were buttoned and straight, while I put everything else away. Forty minutes passed before I fixed tea.

Peter frowned while he sipped, lost in thought. “It’s funny,” he said finally, waving his arms around, “I’m healthy all over the rest of me body. It’s just me head. I can’t remember anything.”

“We could chop off your head!” I said.

As quick as ever in his best Cockney accent, he said, “Off wif ‘is ‘ead!” And with no hesitation, he began to belt out,

I’m ‘Enery the Eighth, I am,
‘Enery the Eighth I am, I am!
I got married to the widow next door,
She’s been married seven times before
And every one was an ‘Enery
She wouldn’t have a Willie nor a Sam
I’m her eighth old man named ‘Enery
‘Enery the Eighth, I am!

We laughed and laughed and, for the moment, nothing else mattered.

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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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Aside

Two laughs are better than none.

Laughs have been scarce lately. Stress, angst and tears blot out any chuckles my husband’s quick humor would usually egg on.

Twice this week, laughs ruled.

I visit nearly every day, in spite of advice from daughters, doctors and friends. As soon as I walk in — I know I shouldn’t do this either — I immediately begin to put the place to rights. I grumble, yes I do, as I put his clothes away, plug in t.v. and lamps, remove socks from his toothbrush holder, and find missing photos, pencils, and domino’s score pads.  Wednesday, in addition to the usual chaos his nightly dismantling causes, the comforter was turned so that the ends were dragging the floor off the sides of the bed.

“Did the aides make your bed or did you?”

“Is it right or wrong?” he asked.

“It’s the wrong way ’round,” I said.

They made it,” he said quickly.

We laughed like we haven’t laughed in weeks.

The next day, his new doctor visited. “I’m Dr. K,” she said. She held out her hand asking, “Would you like me to call you Peter or Mr. Clarke or Dr. Clarke?”

“Hm-m, Dr. Clarke, I think. Sounds good.” She laughed and we did too.

A second laugh in two days, wow! Can’t beat that with a stick, as his ol’ granny might have said.

 

Header: Peter wore his Union Jack necktie to watch the royal wedding May 19. He enjoyed the tea and biscuits as much as I enjoyed the wedding.

 

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