I’ve run out of ‘fake.’

I’ve been called a “fake it ’til you make it” type and that’s probably accurate. I do try to look on the bright side, to laugh rather than cry. And I am able to get things done while projecting a measure of confidence—usually. Lately, however, I’ve run out of “fake.” After nearly 16 years grappling with my husband’s journey from a “mild dementia” diagnosis to “can’t rule out Alzheimer’s,” I’ve spun out.

My spin has shocked me because life has actually eased in recent months. Peter is more settled and, in fact, he’s turned into an 81-year-old version of a ten-year-old class clown. He flirts, he lays on his English accent, he entertains residents and staff alike with his antics. He’s in as good a place as he can be physically and mentally. He has his favorites amongst the ladies who he looks out for and helps when he can, although the other day I watched him guide a resident into the wrong room. She knew it wasn’t hers, but he insisted. I ended up directing her across the hall to her door.

So why have I fallen apart? I should be less stressed, but I’m not. Have I spread myself too thin?

For one thing, with Peter more comfortable I’ve turned my attention to other problems. Although he gets good care in the best facility around, I have some gripes. For one thing, his not taking his medications is at the top of my list. It is simply not acceptable that he gets away with his shenanigans to avoid taking them. Again, when I walked in Friday afternoon, his three morning pills were lying on the table in plain few!

I’ve complained about other issues and they’ve been acted upon. That’s good. So now I’m considering ways to get the large raised flower bed dug over so residents—particularly the men who crave more activity—could plant flowers and more vegetables than they are able to grow in the one small raised plot. Then too, the gazebo should be spruced up — Peter decided the other day that the ceiling should be painted a beautiful sky blue — and the outdoor furniture should be replaced. How nice it would be to have a table and chairs in the gazebo where residents could sit, have a snack, play a game. Where we could have a cup of tea without balancing it on our knees. Is that too much to ask for the amount we pay for monthly care?

I don’t think so, but at the moment I’m stalled, burned out, stuck. To aid the burn-out, I’ve been advised to stop visiting him so often, usually four to five days a week. It is wearing and since he never remembers I’ve been there, I should allow myself to take days off. That’s tough. I want to visit because sometimes, sometimes, there’s a glimmer of the man I married, and I always get a hug before I leave. I always hope that somehow—osmosis?—my visits will have made his day better.

How many times over these years have I been told that the caregiver needs to take care of herself? Well, I admit to being stuck between a rock and a hard place lately, but I’ve taken steps. I’m learning to compartmentalize, I’m exploring mindfulness, I’m breathing deeply to meditative music, I continue my every other week massages, and I continue to look for laughs every day. So far I haven’t stilled my spinning brain by much, but I’m a work in progress.

Tiny flowers thrive in crevices in long-abandoned Inishmurray, County Donegal, Ireland, 2009

Header photo: Guillemots cling to tiny ledge on Cliffs of Moher, County Clare, Ireland, 2009.

2016 National Society of Newspaper Columnists’ contest finalist. 

Sneaky Pete can be a real pill!

Oh he’s sneaky, my husband. I know it, our family knows it, his companions know it, the nurses know it. Sneaky Pete. Sometimes it’s funny, other times not so much. Sometimes his sneakiness has the potential to cause real problems.

A couple weeks ago an innocent mistake triggered his wrath. He was really, really angry. Combative. Luckily a nurse was able to intervene and calm him. My husband has so seldom been truly angry that I could count the times on one hand. This was so not him.

I heard about this after the fact.

At the same time I learned he’d been refusing to take his meds again. This had happened now and then for some time, but as far as I knew the problem had been solved long since. Oh, he appears to take the pills but he pockets them, or tucks them under his tongue or inside his cheek, or simply lays them down somewhere. It is likely that not taking his Wellbutrin for several previous days contributed to his rage.

Residents in memory care units often refuse their meds for fear of being “poisoned.” Or because they’re to hard swallow. One common practice is to put crushed pills in applesauce, or ice cream, Reese’s cups, drinks, pudding, peanut butter, Jello.  Those don’t work with Peter, but one nurse who never has a problem with him, puts his evening pills in his doctor-prescribed after dinner Guinness. Works a treat.

Thing is, he likes to tease and he loves the attention he gets when one of the staff realizes he’s tricked them. For all the time I was his caregiver at home, I dealt with his refusal to take pills by donning my “Mother Tough” persona, my left eyebrow on alert. I’d stand beside him and, to make sure he swallowed them, I’d tell him to hold both hands out palms up, then pull his pockets inside out, and finally open his mouth. I wasn’t bound by HIPAA rules that say a patient can’t be forced to take medications if he/she doesn’t want to. Medical personnel cannot force meds on a patient. If the patient says no, that’s it.

That’s just wrong. If refusing a medication were to cause the patient to become markedly worse—or perhaps cause their death—wouldn’t that be a lawsuit waiting to happen?

This morning I popped in for a quick visit between an appointment and several errands. Involved story, but when Peter searched his pockets  he “found” his morning pills. A helper and I noticed at the same time. “Peter,” we yelped in unison, “you’re supposed to take those pills, not carry them around!”

His silly “who me?” face said he’d achieved his goal. He’d been noticed. He protested all the way through the building to his room and, no, I didn’t drag him by the ear, but I wanted to. In no uncertain terms I told him to put the pills in his mouth and drink them down with the cup of water I handed him. He complained and said they tasted awful. “You’re not supposed to chew them!” I said. “Of course they taste awful. Take a big drink and swallow them.”

I know, I know, I should’ve handled it better. But, doggone it, he doesn’t remember why he’s in memory care nor why he must take various medications, but he does remember how to get a rise out of me and anyone else who tries to help him.

It really isn’t a laughing matter.

Header photo: Jersey Urology.com

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. 

 

 

 

You don’t say.

Some have it, some don’t. Some can think on their feet, some can’t.  I don’t have it and I can’t do it.

My daughters have it, my mother did, so did her sister, and many of my friends do. I mean quick wit, the ability to lead conversation away from touchy subjects. That ability is a gift so important when dealing with someone who has dementia, or indeed for any illness for which the prognosis is dire.

To redirect is a thing in dementia care, a way to direct the loved one away from a topic that is sure to lead to increased stress, a meltdown, anger, tears. To redirect is a mechanism to avoid answering a question that the caregiver doesn’t want to answer and that the patient doesn’t really want to hear.

My corny  excuse to explain my total ineptitude with numbers is, I do words, I don’t do numbers. Likewise, I’m not much of a talker. I use pencil and paper and I listen. As my taciturn dad always said of himself, “Someone has to  listen.”  After the fact, I can always think of what would have been the smart thing, the right thing to say.

For people like me I recommend thinking up a list of things to say when needed. I’ve learned not to say to Peter, “I’m going home,” rather, “I have to leave now.”  I’ve learned not to say, “I’ll see you tomorrow,” rather “I’ll be back,” or “I’ll see you next time.” It’s a way to get around the truth which could well be, I need a day for myself tomorrow, but I’ll see you the next day. I don’t use the word “home” in case Peter were to say, “I want to go home too.” On the very few occasions when he has actually asked when he can leave, I rely on something glib like “when the ravens leave the Tower.” He laughs, I laugh, and his plea is soon forgotten. “Never” is way too harsh an answer even though it’s the truth.

Said euphemistically.

In professional caregiver circles* there’s a controversy about whether dementia patients should be lied to— euphemisms like therapeutic fibs, stepping into their reality, or brief reassurances are sometimes used.  I don’t want to lie, but I bite my tongue if to tell him the truth would make the in-the-moment problem worse.

I’ve read articles that advise talking about simple things, talking down, in other words, to the patient’s level. I  choose not to do that. The way I engage Peter is to tell him what’s going on in the world, the good and the bad. He listens with interest, nods his head or shakes it as punctuation and, at that instant, I truly think he understands. His grasp of my words is brief, but I always feel as if, in that short-lived span, I’ve reached him.

I have a mental file of funny stories to tell him about our two young adult grandkids. He grins as he listens. I share little snippets of gossip I’ve heard, even out of context, and he chuckles. News of our friends interests him, if only for the length of a smile.

As I’ve always done, I do it my way.

Photo memory.

Just yesterday, Peter looked at family photos on his bulletin board and, as he does, counted pictures of himself. He stopped suddenly and said, “There aren’t any pictures of me mum and me dad!  I really should go and see them…’aven’t see them for years, ‘ave I?”

What to say quickly? “Well, you had framed photos of your dad on the dresser,” I said, “but you hid them.”

He was shocked. “Why? Why would I do that?”

“I don’t know….” I gulped  but barged ahead with the truth, “…they both died years ago. Your mum, in 1974 — it’s 2019 now — and your dad, in 1999. He died two days after my dad! We got home from his funeral to find out your dad was gone.”

“No one ever told me! Why didn’t I know?”

“You did know. We got back from Ohio one day and a little more than 36 hours later we were on a plane to England.”

He plopped down to think about this news. While he thought I wrote on his message board:

Mable Doris Walsh Clarke b. April 1, 1908, d. March 30, 1975
John Abraham Clarke b.November 13, 1909, d. November 8, 1999.

When I showed him he said, “How did all that get there,” pointing at my words.

I showed him the green marker I’d used. “I wrote them,” I said.

He waved his hands. “But how did you know all that?”

“I remembered it,” I said. He shook his head. “Someone’s got to remember these things, and you can’t, so I do.” He laughed, as I’d hoped he would, and hugged me.

For once I used the right words.

*”The Memory House / The comforting fictions of dementia care,” Larissa MacForquhar, The New Yorker, October 8, 2018. MacFarquhar is a staff writer, author of “Strangers Drowning,” and an Emerson Fellow at New America.

Header: Peter with his afternoon cuppa.

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 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.

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. 

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.