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. 

Two points for a pair.

Sir John Suckling invented cribbage in early 1600s England. The game, still popular in pubs, is played with one deck of cards, a cribbage board and colored pegs with which to keep score.

Cribbage is somewhat complicated, but even more than the game itself, the odd terms and conventions confuse beginners. This isn’t surprising considering that the country of origin gives its villages such whimsical names as Pucklechurch, Nether Wallop and Great Snoring. Cribbage terms—his Nob, box, the crib, right Jack and Muggins—confuse as well.  A Muggins, for example, is called when a player doesn’t calculate her score correctly— the difference in points is awarded to the opponent. Good thing for me we’ve never followed that rule.

Peter and I used to play a lot of cribbage. He teased relentlessly when I forgot whose turn it was to play after a “go” or whose turn to cut the cards or, for that matter, even to remember when to cut the cards. In my never ending attempt to keep him engaged now, I wondered if he would try to play again. He surprised me.

Without going further into the myriad details and quirks of the game—this isn’t meant to instruct after all—I’ll just say that Peter plays way better than I thought he would. He remembers to offer the dealer, me, a chance cut the deck and to cut for the “turn-up,” while I remember which direction to peg. He never remembers which color is his and often—on purpose I’m sure—moves my red peg ahead if he and his blue peg are behind.

At first he didn’t seem to remember that a hand with four ten-count cards, a five, and a five turned up was an “even ‘doz,” his words for 12 points. But when I used the phrase I saw the tiniest spark in his eyes that said, oh-h, yeseven ‘doz

Mickey M  kibitzes.

When I forget to add extra points for a hand that is all the same suit (four) or that also matches the turn up suit (five) Peter reminds me with a sly look. I never have been able to remember that when “his Nob” is turned up the dealer gets two points.

He’s remembered the custom to knock sharply on the table to signal either that he can’t play or doesn’t want to cut. Another niggly convention I seldom recall.

It has worked out that whenever we play one of us remembers what the other forgets. Peg two points for the pair we are!

One day I suggested we play Rummy for a change. Nearly every hand, Peter forgot he needed to lay down at least a run of three or three of a kind. It confuses him when I remind him that he can draw from the discard pile if he wants a certain card and is able to play it with something in his hand. I’d just discarded a queen when he asked, “Can I pick that Queen up?”

“Yes, but you have to play her with at least two other Queens, or the King and Jack of hearts.”

He studied his hand then, with a flourish, spread four Queens and three tens across the table.  “OUT!” he said.

I sputtered. “You fooled me again, you cheeky bugger.”

He loves to make me laugh and I love that he still tries.

Header: Peter and Nobby are featured on cards we use.

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. 

 

Puzzling.

A lot of puzzling memory and behavior problems cluster under the dementia umbrella. So far, science knows too little about most of the variations and nothing that can cure any of them.

img_4436On a day-to-day living-with-it level, my husband’s memory issues are baffling to both of us. He’s always liked to do crosswords, and still brags about the time 50 years ago when he won the London Times Sunday crossword challenge. He does the daily crosswords still, but I’m not sure how well. He enjoys jigsaws too, and recently resurrected a 3D castle puzzle.

So I got out several Christmas puzzles we’ve worked many times over the years. Among them, a tiny one depicting a mouse dressed as Santa. I sorted the edge pieces from the rest. and laid out the one small section that was still stuck together. The whole thing is quite small. He got into it quickly. Ten minutes later I went back to see how he was doing. There were a lot more white background pieces than before.

img_4440“Where did these come from?” I asked. He shrugged his shoulders and muttered something about “needing more.” I picked up a piece that had green pine needles as part of the design. “Oh, these don’t go with this puzzle,” I said, “they go with this one.” I showed him the larger puzzle I’d set aside. It pictures wild birds on a feeder that hangs from a pine bough. It was partially put together in the box.

img_4437Peter doubled over laughing at himself. “Well, when I couldn’t find the pieces I needed, I thought they might be in that box,” he explained. He realized how silly that sounded.

“We’ll do that one separately,” I said. “Finish this little one first.”

“There aren’t enough pieces,” he said, grabbing for the bigger box again. He’d instantly forgotten we’d had that conversation, that he’d laughed at himself.

As often happens, I tried to make sense of how he can work on an intricate 3-D 620-piece jigsaw one minute and the next try to fit a 500-piece 12″ x 36″ puzzle into a 100-piece 7.5″ square frame.

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Header: Tiny puzzle puzzles.

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Say a lot in few words.

When our friends Jerry and Shelia visited, Shelia took me aside to  ask, “Does Pete worry about anything?”

“No,” I said.

She smiled. “He doesn’t have to, you take care of everything. He has no worries.”

I nodded and she gave me a hug. There was nothing more to say, and for effervescent, talkative Shelia, that in itself was saying a lot.

2016 National Society of Newspaper Columnists’ contest finalist. 

 .

Fish story.

A rank smell had permeated our basement for weeks. I couldn’t find the source so chalked it up to our muggy summer and a husband who refuses to let the dehumidifier run.

When we got back from ten days away, the odor, now thick as mud, impregnated my nose. I asked Peter to help track it down, but his sense of smell only extends to candles and perfume, both of which he dislikes intensely. I was on my own.

screen-shot-2016-10-05-at-4-03-12-pm

“Welcome to Dementialand: Living, Loving and Laughing through Alzheimers and Related Dementias” is an informative blog by Elaine Eshbaugh, PhD. A gerontologist at University of Northern Iowa, her expertise centers on many things we caregivers need to know. She has written a series on how dementia changes the way individuals experience the world, one post about each of the five senses. “Smell” couldn’t have been more timely for me.

“Many people…notice that as they get older, they no longer detect smells like they [did] in the past. However, the change…for individuals with dementia is more severe and can even be dangerous.” Burning food and smoke, for example. “Smell has an important function for us,” she says. “…People with dementia may lose the ability to interpret certain smells as signs of danger.… Smoke alerts us to fire…that connection is eventually lost for people with dementia.”

Eshbaugh’s words reminded me that my husband’s grandfather, over ninety then, had nearly set his house on fire because he forgot he’d put the kettle on for tea. Not long after, Peter’s dad had to move the old fellow to a nursing  home, because of his own Parkinson’s. He could no longer look after his father. Peter burned up our electric kettle several months ago when he put it on the gas stove to boil. He didn’t smell it smoldering, and I, upstairs reading, didn’t either. The next morning when Peter picked up the kettle, chunks of plastic fell off the bottom. I realized what happened, but he didn’t. He had no memory of it and wondered why the kettle wouldn’t work.

“Smell also alerts us to spoiled food. … It doesn’t work that way for people as dementia progresses,”  Eshbaugh writes. “Keep in mind that our actions are based on how we experience the world. Dementia alters [that] by changing sensory perceptions. … And those experiences are based on what they do and do not taste, see, hear, touch, and smell.”

And that brings me back to our stinking basement.

screen-shot-2016-10-05-at-4-03-12-pm

screen-shot-2016-10-05-at-12-19-25-pmThe mystery wasn’t solved by Friday evening and I was tired. I decided to fall back on a frozen pizza from the basement refrigerator. When I  opened the freezer a stench rolled out like a London fog, yet everything inside was solid. I opened the fridge door and gagged. Hm, something suspicious in the crisper drawer.

Ah-h, two formerly frozen packages of trout my friend John had brought us months ago. I’d planned to fix them one night, then changed my mind. I asked Peter to put them back in the freezer, but obviously, he’d put them in the fridge instead. I never thought to check, then or while I sleuthed.

Since he can’t smell anything, he got the task of triple-bagging the reeking fish, dousing them with baking soda, and trashing them.

Nancy Drew would have laughed at my noticeably lacking skills.

Header photo: Peter catches a not-keeper.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Caregivers’ resource: “Welcome to Dementialand: Living, Loving, and Laughing through Alzheimer’s and other Dementias,” Elaine Eshbaugh, Phd.

 

Call a spade a spade.

From Sally Hepworth’s touching, witty, insightful, heartbreaking novel, The things we keep, these two paragraphs jumped off page 21 and imprinted themselves on my brain and on my heart:

Dr. Brain once told me that an Alzheimer’s brain was like the snow on a mountain peak—slowly melting. There are days when the sun is bright and chunks drop off all over the place, and there are days when the sun stays tucked behind clouds and everything remains largely intact. Then there are days — spectacular days (his words) — when you stumble across a trail you thought was gone forever.

“I get the feeling that since the analogy involved the words “mountain peak” and “spectacular,” Dr. Brain thought this news wouldn’t be depressing to hear, when in fact, the opposite was true.  I think I’d have felt better about my prognosis [Anna is 38 and has early-onset Alzheimer’s] if he’d reworded a little. Something like, The brain is like a filthy, stinking pile of crap. When the sun comes out, it stinks worse than you can imagine, and when it’s cold or cloudy, you can barely smell it at all. Then there are the days that, if the wind is coming from a certain way, you might catch the cold scent of a spruce for a few hours and forget the crap is even there. With that analogy, at least we’d have been calling a spade a spade. Because the truth is, if you have dementia, your brain is crap. And even if you can’t smell it right this minute, it still stinks.”

Graeme Simsion, The New York Times bestselling author of The Rosie Project, praised The Things We Keep, with these words: “A compelling read that touches on important themes, not least the different forms that love may take.”

TTWK Cover

The things we keep is a book to read and read again. Both funny and sad, it’s a page-turner I raced through, but a book that I didn’t want to end. I don’t know if Hepworth has first-hand knowledge of Alzheimer’s or if she just has a brilliant imagination. Whatever, she has captured what I think I see happening in my husband as the disease increases its grip.  And, yes, it stinks.

Screen shot 2015-05-20 at 5.30.52 PM

The things we keep, Sally Hepworth, pp. 21, St. Martin’s Press ©2015

 

Don’t dwell on the disease…

No disease should be allowed to have as its victims both the patient and the caregiver. But that is exactly what is happening every minute of every day.”

—Meryl Comer, Slow Dancing with a Stranger:
Lost and Found in the age of Alzheimer’s
(2014)

[Author Meryl Comer] argues persuasively that we can’t “age-proof our lives” and that this disease, “the dark side of longevity,” is a “looming health catastrophe” for us all. “My greatest fear,” she writes, “is that mine will be the family next door by midcentury.”

— Jane Gross, The New York Times, September 1, 2014

 

…Value the moments, the pearls of wisdom,
their smile and humor.”

— St. Elizabeth

 

Drawing: Alzheimer, Krankheitsfälle d. spät. Alters.  Verlag von Julius Springer in Berlin. Plate 5, Fig.2, “accumulation of lipoid material in a plaque near a capillary. becker.wustl.edu

When the edge is gone.

Our son-in-law Martin launches into contemplative ruminations occasionally, usually about some subject so obscure that no one knows what he’s talking about. We all laugh and pay him no nevermind. Some eyes may glaze over as he rambles.

Not long ago, Leslie and Martin, Peter and I went out to dinner. Leslie and I chattered about this and that, Martin chimed in now and then, and Peter listened, silent as usual.

Into a gap in the conversation Martin said, “You know, Pete reminds me of a well-loved old kitchen knife. A very good knife, once sharp, but a bit dulled by time and use.” Leslie and I chuckled, and Peter smiled as if he got it, but I know he didn’t. Martin was pleased with his metaphor and, I admitted, it was a good one.

Old knives did all sorts of jobs in the right hands — they peeled apples and potatoes, chopped cabbage, loosened sealed jars, dismembered chickens, even acted as screwdrivers in a pinch. Even when they don’t hold their edges anymore, those knives still hold pride of place in kitchen drawers, for sentimental reasons, if for nothing else.

 

Screen shot 2014-12-07 at 12.50.18 PM

My great-granddad Tommy’s whetstone and an old knife from my drawer.

 

Alzheimer’s: the elephant in the room.

In 1906, Dr. Alois Alzheimer identified the disease that came to bear his name. In 1979, Alzheimer’s Disease (AD) caused 875 deaths in this country. That was the first year AD was identified as a separate cause of death. By 1993, more than 18 thousand people in the U.S. died from AD.

• Approximately 5.3 million Americans currently live with AD.
• Some 200 thousand of that number have early-onset AD — people in their forties and fifties.
• Every sixty-eight seconds another American is diagnosed.
• AD has been listed as the sixth leading cause of death after heart disease, cancer, chronic lower respiratory disease, and accidents. However, in March, 2014, the American Academy of Neurology reported AD is now the third leading cause of death.

Warning signs of AD:
• Profound memory loss
• Inappropriate behavior or behavior swings
• Apparent confusion and agitation
• Difficulty with spoken or written language
• Difficulty with routine tasks, such as bills
• Problems with vision and understanding spatial relationships
• Signs of impaired judgment and reasoning

Screen shot 2014-09-03 at 12.04.53 PM

Whenever I walk into a room, everyone ignores me. (Coldell cartoon)

 

Dementia is a symptom.  AD is one cause of the symptom. Dementia is considered the general term for decline in mental ability severe enough to interfere with daily life, memory loss for example. Experts agree that AD is the most common and accounts for as many as 70 to 80 percent of all cases.

Among dementia’s many other causes are Lewy Body disease, Parkinson’s disease, Vascular or multi-infarct dementia, fronto-temporal, and thyroid disease. Most are not reversible, rather they are degenerative diseases of the brain that get worse over time.

Too often, a doctor will tell the patient that he or she has “a little dementia” or in my husband’s case, “mild dementia.” Patient and family leave the office feeling relieved that it’s only dementia and not Alzheimer’s. I know I did. When we got into the car to come home I started bawling. Peter wondered what was wrong with me. I almost never cry.

“I thought she was going to say you have Alzheimer’s,” I told him.

“You mean I don’t?”

“No! It’s just dementia.” We even went to our favorite place for coffee and pastries to celebrate.

“Dementia” isn’t funny, but laughter in large doses does help. I can no longer ignore the elephant.

Screen shot 2014-08-12 at 8.55.42 AM

Sipress cartoon.

 

 [Facts and figures taken from on-line sources which show varying, but similar, statistics.]