Dementia: tragedy, comedy and love story.

“You know I’m not about rainbows and unicorns,” Elaine Eshbaugh, PhD writes in her first blog post of this new year. I’ve been following her “Welcome to Dementialand: Living, Loving, and Laughing through Alzheimer’s and Related Dementias” for some months. She has a “tell it like it is” style that resonates with me.

“If you are one of my regular blog readers,,” she says, “you likely have dementia or love someone with dementia. I am not going to feed you some bullcrap about becoming a better version of yourself or making 2017 the best year ever. For those of you in the trenches of Alzheimer’s or a related dementia, it may seem laughable for me to wish you a smooth path, so I won’t. My wish…is that you have the strength to endure the journey and…know when to ask for help. My hope is that you have a sense of humor to carry you through and a keen enough eye to spot [even subtle joy….”

Wise, but blunt, honest. I like that.

“I wish you hope even if hope has changed,” she says, citing couples who have planned post-retirement adventures that will never happen. Before dementia engulfed us, Peter and I were lucky enough to complete all but one trip on each of our bucket lists. Antarctica was mine, and the Terra Cotta soldiers in China was his. That worked out just fine because he insists he did go to see them, even though it was on t.v.

“Dementia is a tragedy, a comedy and a love story all at once,” Eshbaugh writes in her 12/26/16 post, “Lessons  learned…” She is amazed that families whose lives are impacted by dementia can still find humor in their situations, yet apologize for laughing.  “…They need to stop apologizing for that. No, dementia isn’t funny, but the more moments of humor you can discover on this journey, the better off you will be.”

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Tricky Nobby.

The other morning I laughed at a new trick Nobby, Peter’s dog, managed. Lately, we’ve started blaming him — “Nobby did it” — for the strange things that happen around here. For instance, Nobby often takes his Invisible Fence collar off and hides it; he went to Kroger’s and paid for a Hershey bar with his VISA card; he puts food needing refrigeration in a cupboard and leaves things that should be in the freezer on the basement floor. The most recent trick is the most amazing yet. Somehow he managed to unplug a lamp, take its shade off, remove the bulb and hide it!

Yesterday was his ninth birthday, old in “dog years. ” I chuckled at the twist on the old saying You can’t teach an old dog new tricks. I’m here to tell you, an old dog can teach himself new tricks!

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Thanks to Elaine Eshbaugh, PhD, Associate Professor of Gerontology and Family Studies, University of North Iowa for permission to quote.
Header photo: Lisa Frank, 2013 Facebook.

Forever — is composed of nows —

For my husband to give me a meaningful card for our anniversary was present enough. But coupled with heart-shaped earrings in a beautiful little box, WOW!  With Leslie’s help — she offered him three choices — he picked the earrings and the handcrafted box to put them in. He doesn’t remember our Boxing Day anniversary, nor how many years we’ve been married, but some glimmer helped him choose perfectly.

When I opened the Leslie-wrapped present, he hung over my shoulder to see what he’d given me and why. “Our anniversary? Did I forget?” I said he hadn’t, and that the box and earrings were what he’d given me.

“I did a good job, didn’t I?” he said. “Did you give me something?”

“I did. That card on the mantle…and shoes.”

“Shoes? You gave me shoes?”

I laughed. “Two pair yesterday,” I said.

“Why?”

“Why did I give you shoes, or why did I give you two pair?

“Yes.”

“”Well, shoes because you’ve been complaining you don’t have any, and one pair because it was Christmas and the other pair as an early anniversary present…”

“Anniversary? Did I miss it?”

“No, it’s today, it’s ‘now,'” I said. I held the box up to show him Emily Dickinson’s line.

He shook his head. “I don’t know what that means.”

Hm, Dickinson is sometimes hard to explain. “It means ‘now’ should be treasured and celebrated, our anniversary, for instance. ‘Now’ means the present…right now…’forever’ is made of all our ‘nows.'”

I don’t think my stumbling explanation made sense to him, but he was pleased that I was pleased with “the present” he chose.

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Birdseye maple box, Mike Mikutowski Wood-working. Lapis lazuli earrings header above, Cathy Guss

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

How deep was my happiness?

Anyone who knows me knows I’m happiest when buried up to my earlobes in snow, luxuriating in the cold, pristine sparkles, the way others roast themselves on sandy beaches.

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Softly falls the snow.

December and most of January were “dark days of my discontent” to paraphrase Steinbeck who paraphrased Shakespeare. “Dark” because the ground was brown and bare, the temperatures, moderate. Without crisp white snow,  winter is worse than summer in my view.

Kathleen Everett’s blog, “The Course of our Seasons,” moves me. In her, I found someone whose thoughts echo my own. She published this January 16, 2016:

IT IS NOTHING REALLY

Trying to wrest my mood from the dark side,
I cling to the path
well-worn from years of mindless wandering.
that same heaviness plagues my heart,
rending my chest in two.

It is nothing really.

Just the dance on the edge of that cliff—
the one at times I find myself
teetering and scrabbling,
struggling to find firmer ground.

It is nothing really.

Though at this moment
it seems more like quicksand
or a rabbit hole
or a trap door
or something.

But is is nothing,
really.

Kathleen’s poem can be interpreted several ways. When I’m down, I feel that heaviness, see the trap door. Drab, brown weather depresses me. It doesn’t help that my husband is slowly getting more forgetful, more confused, less himself.

Last week’s historic blizzard “Jonas” was a balm for me. Not so Peter. When we lived up north he enjoyed snow nearly as much as I did, well, except the years spring didn’t arrive until mid-May.  We snowshoed, cross-country skied, hiked, moved snow and chopped monster icicles.

I’ve always loved to shovel snow, and Peter loved to scrape down to bare ground. When he finished, the edges of the driveway looked as if the snow had been chiseled away.

Jonas started about five a.m. By nine o’clock a mere four inches lay on the ground. I shoveled a path to the backyard for the dog.

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Nobby loves snow too.

A cup of coffee later, I went out front to tackle the increasing depths.  Peter wouldn’t be far behind, I thought. I made a walking path to the street, another along the sidewalk, a third from street to front door for the mailman. Still no Peter. No mailman either until Monday, though our newspaper lady delivered.

Peter finally emerged Saturday afternoon to scrape the paths I’d made. Sunday morning, glorious and sunny, I took on the rest of the driveway. Thankfully, the snow was like crystallized feathers. Peter got into his old routine. He scraped and sliced, swept and brushed. Together we attacked the icebergs the plows had shoved in our way.

Later, while he Skyped with a friend in England, I heard him say, “No, only a few inches…some places got more, but not here.”

The depth of my happiness was diminished.

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Snow-capped sedum.

Header caption: Barely icicles, cold splinters are no northern widow-makers.
“It is nothing really” Kathleen G. Everett ©2011-16

2016 National Society of Newspaper Columnists’ contest finalist. 

‘Blue skies, smilin’ at me, nothin’ but blue skies do I see…’

If only the lyrics from Irving Berlin’s “Blue skies” were true at our house. Phrases and actions cause repeats — I call them rePetes — in Peter’s brain. Picking up tiny sticks in the yard and endless sweeping on our brick terrace are two of them.

Lately, with November’s crisp weather bringing brilliant skies, Peter has become enamored of the beautiful blue. “Not a cloud in the sky,” he says over and over. “I’ve never seen such a blue sky.”
“Yes, it’s a beautiful day,” I agree.
“Look at that. There’s not a cloud in the sky. Have you ever seen such a blue sky?”
“Mm-mmm.”

I guess there are worse things to be stuck on than the beauty above us.

“Blue days, all of them gone,
Nothin’ but blue skies from now on

Bluebirds singin’ a song
Nothin’ but bluebirds all day long…”
Ah, if only.

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While trying to find the perfect blue sky photo to use above, I came across this lovely little poem and accompanying picture. Thus inspired I thought, why not go outside and take a photo of our “I’ve-never-seen-such-a-blue-sky” sky? So I did, and laughed at myself for taking so long to think of it.

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a bluebird’s wing
by Kathleen Everett
Gray morning fog lifts
revealing the November sky
cloudless
clear
color of a bluebird’s wing
an autumn aster
your eyes

 

 

Header photo: “Not a cloud in the sky” taken by me, 11/14/15.
“Blue Skies” lyrics, Irving Berlin
“a bluebird’s wing” Kathleen Everett, The Course of Our Seasons ©2011-2015
Feather ©Rakkla

2016 National Society of Newspaper Columnists’ contest finalist. 

The 36-hour weekend.

“A change is as good as a rest,” is one of the many sayings Peter attributes to “his ol’ Granny.”  That bit of English wisdom carries a lot of truth. I was never exactly sure what it meant until I experienced it. Now I know.

Peter and I can no longer take the weeks-long adventuresome trips we used to, but we now have access to a place that rivals some of our long holidays, Martin and Leslie’s log house in the  mountains not too far from here. It’s a wonderful spot — serene, isolated, with a river running past. Calmness wafts over me as soon as we drive in.

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The island idyll.

Generally we arrive Saturday mid-morning and leave before dark on Sunday. Just 36 hours or so, but those hours really are as good as a week away.

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Leslie hides.

We don’t do much there. Sometimes we help with gardening or other projects, but mostly it’s a place to kick back, relax. Leslie and I play cards, and we’ve recently rediscovered coloring books and the concentrated joy they bring. We also spend a lot of time looking for mica-studded rocks that glitter in bright sun. The whole area shimmers as if a fairy godmother had just wafted through with brilliant sprinkles.

Martin fishes in season, but Peter excuses himself because he’s “not a water person.” In truth, he can’t swim. A few weeks ago, Leslie convinced him to put on shorts and water shoes, then wade through ankle deep water to  the stoney island where we have lunch, read, snooze, or just be.

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The fish were biting that day.

Leslie and Martin swim, but I like to float in an inner tube now that the river’s flow has changed just enough to create a calm spot that allows me to stay put rather than drift away to the Atlantic. A few weeks ago, the two of them tubed together holding hands. Cute until Martin yelped and jerked upwards. Leslie shrieked with laughter then she too cried out. Mart yelled, “THE FISH ARE BITING OUR BUTTS!”  They returned to the safety of the island, laughing hysterically.

Peter revisited his stone-skipping prowess that day. He’s still a champ, sometimes getting ten or eleven skips per stone. I watch him and think, our travels of several years ago were terrific, but really, it doesn’t get much better than this!

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Peter still has the technique.

Photos: A favorite retreat.

2016 National Society of Newspaper Columnists’ contest finalist. 

Celebrate ‘Poppy’s hope!’

The Parade magazine in today’s newspaper features a cover that shouts: People Power: how caregivers and advocates are piecing together a better world for people with Alzheimer’s.

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Poppy hopes.

Yesterday I posted about the Alzheimer’s Association’s fund raising event, The Longest Day™,  that’s taking place today. Though a small effort among the hundreds of teams and tens of thousands of dollars that will be raised, Carolynn’s “Poppy’s Hope” challenge has now reached a very respectable one thousand dollars.

 

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The art of losing isn’t hard to master;
so many things seem filled with the intent
to be lost that their loss is no disaster.

Lose something every day. Accept the fluster
of lost door keys, the hour badly spent,
the art of losing isn’t hard to master.
Elizabeth Bishop (1911-1979) Geography III [1976]. One Art.

 

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Even memory is not necessary for love. There is a land of the living and a land of the dead and the bridge is love, the only survival, the only meaning.
— Thornton Wilder (1897-1975) The Bridge of San Luis Rey [1927], last lines.

 

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It’s a poor sort of memory that only works backwards,” the Queen remarked.
— Lewis Carroll (1832-1898) Alice’s Adventures in Wonderland [1868].

 

Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment.
— Buddha.

 

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We don’t know how strong we are until being strong is the only choice we have.
— Alzheimer’s Disease Awareness.

 

Photos: Our gardens at their best.

2016 National Society of Newspaper Columnists’ contest finalist. 

A life sentence.

Periodically, our long term insurance company arranges for a nurse to come assess my husband — they want to  make sure he still has dementia, I guess. Today was the day. We were lucky to have Caroline again. Peter clicked with her before and again today.

The questions she asks are almost exactly the same as those his neurologist asks, and we were at her office yesterday. They want to know if he has any physical limitations, dizzy spells, or loss of strength, and if he can do household chores or handle bill-paying.

No, no, no, no, and no.

The hardest questions for most dementia patients are: can you name the day of the week, the month, the year, the season?

No, no, no, and no.

“Now I’ll ask you to remember three words,” Caroline said. Peter groaned and she smiled, but went on. “You’ll get one point for repeating the words correctly right away, and then again after you’ve either counted backwards from one hundred by sevens, or spelled the word “world” backwards. OK?” Peter nodded. “Your words are table, book, tree.”

“Table. Book. Tree,” he said. One point.

“Now, would you rather count backwards by sevens or spell “world” backwards?” she asked.

No hestitation. “D-L-R-O-W.”

“Great!” Caroline said. “Now, the very last part.” She handed him her clipboard and asked him to copy the multi-sided figures shown. After that she asked him to write a simple sentence.

“Sentence about what?” Peter asked.

“Anything at all,” she said. “A short sentence, but it has to make sense.”

Peter quickly copied the three figures, and after thinking a few seconds he wrote a sentence.

She looked at the clipboard. “Oh-h, that’s so sweet,” she said. She showed me his sentence: “I still LOVE my wife.”

Even though he didn’t score as well as he did the last time she was here, my unsentimental, undemonstrative husband got an A+ from me.

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Header photo: Swans at Middle Gardens, Charleston, SC, May, 2009.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

My funny Valentine.

By our first Valentine’s Day together, 1975, I’d already learned that my future — seven years in the future! — husband Peter wasn’t going to be the mushy-gushy Valentine type. He often did sweet things, but he disliked intensely having to do something because the calendar or Hallmark demanded it.

I was a bit disappointed he hadn’t even bought me a card, but he redeemed himself when he suggested a walk in the park, in the fresh snow, near my house. He was not a snow-lover like me so he was back in my good graces for even thinking of it.

After we’d walked over hill and dale for a while he told me to stop. I was to stand still and face away from him.  He trotted off while I admired the view. Minutes ticked by.

“OK! Turn around!” he yelled.  He stood some distance away, pointing proudly to a big heart shape he’d paced off in the snow. In the center he’d “written”  I love you. Way better than any card he might have purchased!

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I didn’t expect any Valentine’s remembrance today, and so far I haven’t been disappointed. I stuck a silly card inside the newspaper for him and he laughed. He gave me a hug and kiss to say sorry for forgetting again. “You should have reminded me,” he said.

“What? The big red heart on your calendar wasn’t enough?” I said with a chuckle. “It’s OK, you can take me for coffee.” I handed him some cash.

We went to our favorite spot where I feasted on an almond croissant, he, an apple turnover. The bakery was more mobbed than usual for a Saturday morning. A festively dressed man played romantic songs on a keyboard.

“Do you remember our very first Valentine’s day together?” I asked my husband of now thirty-three years. “It was 1975…we met in May the year before…”

“Did we have coffee here?” he guessed.

No-o, we weren’t even married then, and we didn’t live here anyway.”

“How can you remember that? I don’t even remember yesterday?” he sputtered.

So I told him about the heart he’d made in the snow and how sweet, how romantic, it was. He shook his head sadly and gave me an apologetic smile. Suddenly he brightened and asked, with a nod towards the musician, “Does he take requests?”

“I’m sure he would,” I said.

He sighed. “I can’t remember any romantic songs to ask him…”

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source Pinterest

We haven’t had any measurable snow yet this year, though it is snowing quite hard right this minute, and it’s sticking! Maybe later I’ll repeat the story about our first Valentine’s day, and together we can make a snowy heart in our backyard.

As long as we have memories, yesterday remains;
As long as we have hope, tomorrow waits;
As long as we have love, today is beautiful.

Header photo: Knock-out rose.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Times change… years go by…

Thirty-three years ago today, Peter and I married with my daughters, Carolynn and Leslie as our witnesses, and a fellow Ohio University grad, Reverend Timothy Behrendt, as the officiant. Just us, on a snowy upstate New York day. Friends contributed to the raucous party that followed.

Our marriage was a long time in the making — seven years from the magic night we met. A lot of urging by family and friends, extreme measures by me, and a final ultimatum finally convinced Peter. For the past several years, he hasn’t remembered the day at all. When we agreed upon easy-for-an-Englishman-to- remember Boxing Day, we didn’t reckon on dementia moving in.

I wrote the ceremony, and borrowed from several poems, little knowing how prophetic they would be:

You are here, Carolynn and Leslie, to witness and to celebrate the coming together of two separate lives, to join Peter and Judy in marriage, to be with them and rejoice with them in making this important commitment. The essence … is the taking of another person in his or her entirety as lover, companion, and friend. It is therefore a decision which is not to be entered into lightly, but rather undertaken with great consideration and respect for both the other person and oneself.

So today we acknowledge the decision that Peter and Judy have made to share their lives with each other and with you.

Sharing, not at the expense of each other’s individuality, rather sharing by enhancing your own uniqueness through the strength of a common bond. Marriage represents a mutual arrangement in which each is the guardian of the other’s solitude. To affirm the distance between each other is to affirm the dignity of friendship in which each helps the other to grow continually, to be different, and to be alone at times.

Too often love is thought of as the answer to loneliness. Love is put in opposition to loneliness and is thought of as the antidote to the experience of being lonely. “Love, in fact, is a kind of loneliness. Really, to love is always to accept the otherness, the mystery of the other, and to refuse to violate that mystery…

It is a sign of great strength, rather than weakness, to let other people be and not interfere with the choices they wish to make.

Very likely then, the “Highest type of sophistication is love, namely the ability to let that which is different exist and be itself. True, that means an inevitable loneliness —but the loneliness of love is far to be preferred to the togetherness of blandness and characterless-ness.

To experience one’s aloneness is to experience who one is. Real love is the ability to say “no” to everything that seeks to dilute love into a kind of togetherness and to protect us from our solitude, while violating the solitude of another.”

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This year, again with son-in-law Bill’s guidance, Peter picked out a perfect anniversary card for me that read, in part, “Times change, life goes on, years go by …”

Well, ain’t that the truth?

All our lives together, forty years total, my husband has never done schmaltzy cards except for Christmas, our anniversary, and occasionally, my birthday. Now he has to be reminded several times over that those dates are coming up.

I, knowing he doesn’t like “sappy” sentimentality foisted on him, always buy a silly, jokey card. This year the cashier and I hiccuped with giggles at my choice: “Sometimes when we’re lying in bed, I look over at you and think, ‘I am so lucky…’ then you start snoring in that snorty way, and I think, ‘Well, that’s annoying, but I’m still lucky.'”

And I am.

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Cobwebs of a mind.

On the spur-of-the-moment last week, I suggested we go to the DMV to get a photo ID for Peter.

“Why do I need one?” he asked.

“Because your driver’s license isn’t valid anymore,” I said.

“Why’s that?”

“It expired last year.”

“Why?”

“Because you decided you shouldn’t drive anymore. You kept getting lost.”

Inside, I was relieved there weren’t many people waiting. I completed the form for Peter to sign.

“Why are we here?”

“You need to have a current photo ID. You might need to prove who you are.”

He laughed. “Will I get a driver’s license?”

“No, this is only for identification.”

“Whew! That’s good. I get lost when I’m driving.”

“You get lost when you’re not driving,” I said.

“Good one,” he said, and laughed again.

After an hour’s wait, we were called. A nice young man took Peter’s information, then frowned. “Where were you born, Mr. Clarke?”

I waited to see if he would answer. He usually defers to me. A little smile tugged at his mouth and I knew he going to answer in a Cockney accent: “Bouhn in England, in’t oi, mate?” I cut him off quickly. “He was born in London…England. He’s been here on a permanent visa for almost fifty years.”

The fellow conferred with a co-worker. I knew what was coming. “Why didn’t you renew your license last year, Sir?”

“He can’t drive anymore, he has dementia,” I said. But that didn’t fully answer the question. They needed a current photo ID, even though he still looks like the photo on his license.

“Current U.S.passport?”

“He’s a British subject.”

“Current English passport or green card?” he asked.

“Not with us.” So much for spur-of-moment.

He looked at the clock. “If you can go home, get them, and be back before five, I can take care of this today.”

We made the round trip in record time. True to his word, he called us right away, and within minutes Peter had a temporary ID, with the promise that the permanent one would arrive within days.

And it did. When Peter looked at it he said, “Can I drive with this?”

“No, it’s just for identification.”

“Whew, that’s good! I don’t think I should drive anymore.”

For once I didn’t argue.

~ ~ ~ ~ ~

I stumbled across these haunting lyrics  to “Cobweb” by The Coral, an English rock group. If my husband could sing, or if I could, we’d sing this:

There’s a place where the creatures play
I’m going there at the end of the day
Who knows what I’ll find
In the cobwebs of my mind

There’s a face in a photograph
In the attic, beside the map
Closer to the tide
In the cobwebs of my mind

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From the watch-house to the marshes
Following the signs to Colwyn Bay
And ships from Eagle’s Way

We stick together through the thick and thin
Let’s go out, that’s where I begin
Now I’m lost inside
In the cobwebs of my mind

There’s a place where the music plays
I’ll meet her there at the end of the day
Who knows what she’ll find
In the cobwebs of my mind

When she moves her beauty falls
In the garden the masters call
She knows where I hide
In the cobwebs of my mind

She reads my eyes
She reads my eyes