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. 

‘Can’t repeat the past? Why of course you can!’

My high school prom in 1957 — in June or was it May? — is a foggy memory. I don’t even remember who I went with. But April 10, 2019 is a prom date I’ll never forget. I was a bystander at a prom last Wednesday that was memorable for so many reasons. There was fantastic food, live music, corsages, boutonnieres, a big crowd. Kings and Queens were crowned. Many of the prom-goers were in wheelchairs, and most of them forgot the fun and laughter even before the music faded.

That evening, Sigma Kappa sorority and The German Club of Virginia Tech sponsored The Great Gatsby Prom for residents of the facility where Peter lives. When I heard about the event just a day earlier, I dug out the green velvet jacket Peter made for himself years before I knew him. I found his orange and purple bow tie too. Carolynn, here for the week, helped wrestle him into his finery. Typical theatrics ensued as we convinced him to participate: What is a prom? Why do I have to go? I’ll just stay here. We held hands as I coaxed him along the corridor.

Black, gold and white balloons and streamers festooned the dining room, the ladies wore their best attire fancied up with beads and glitter, and the men went along with everything, much like they probably did for their high school proms. The staff were all dressed in 1920’s attire to go along with the Great Gatsby theme.

Didn’t take long for Peter to get revved up and charm the ladies. In his element, he flirted, he danced, he caroused, he was his silly, wacky self. Old pals who remember the Peter of days gone by would have been shocked to see him drinking not one, but two Cokes. Yes!

Carolynn and I giggled hysterically as he entertained his admirers, many of them sorority girls younger than our granddaughter. He teased and made faces and beamed ear-to-ear. I’d figured we’d stay to escort him back to his room, but he was having such a good time we snuck out. The hours for this prom were 6:30-7:30, no all-night after-prom activities for this crowd. By the end, Peter was still cavorting. He didn’t need me nagging him to leave as I used to do. He didn’t even need me at all and I was glad to know that.

As I watched the evening unfold, I realized I’d made the right choice, heartrending as it was, when I moved him into memory care a year ago.

Title quote: The Great Gatsby by F. Scott Fitzgerald.

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. 

 

‘Peaks and valleys,’ he said.

We were an instant couple, Peter and I, when we met forty-some years ago. At the time, I was a struggling single mom with two young daughters to raise. “Peaks and valleys,” Peter would counsel when I fretted, “life is all peaks and valleys.”

I’ve thought about his mantra recently and wondered, would he even understand the meaning of the words now. As his dementia worsens the valleys are deeper and wider, the peaks, fewer.

A week ago, we teetered on the edge of an abyss.


The day started beautifully, definitely a “peak.” Soft warm breezes encouraged me to garden and Leslie came for lunch and cards. Perfect. Peter used her visit as an excuse to take his lunch to the basement where he’d watch t.v. Two hours later, when I yelled to tell him tea was ready, the silence below screamed. The basement was dark.

I dashed upstairs calling his name. Gone.

Gone!

He’d sneaked out while Leslie and I sat just outside. I use “sneaked” advisedly because he’s done it a few times. He has a “stealth” mode that allows him to slip away. Nobby, usually at his side, wasn’t with him because for the previous four days he hadn’t walked at all. His woeful puppy eyes told us his old arthritic knees ached.

Leslie took charge immediately, while I, heart-hammering and generally useless, attempted to follow her orders. She called the police, family, friends, told me to send photos of Peter to her, posted Facebook messages. With three photos on her phone, she sped off to nearby businesses — grocery, restaurants, bakery, wine shop, hairdresser. I stayed home to answer phone calls and texts, to be there in case he came back on his own. I called friends to be on the lookout and soon, unbidden, Peter’s carers, Karen, Bill and Mark, showed up to offer help and support.


The power of Facebook startled me, a hesitant user. Re-posts popped up quickly. Granddaughter Samantha, who lives in Washington, DC, has a friend with a niece who’s interning with our local EMT squad. Some four hours after I discovered he was gone, the young woman, thanks to her aunt’s post, spotted Peter on the steps of a church on the northern edge of town.

Meanwhile, son-in-law Martin, directed by Sam 267 miles away, went to collect Peter. Sam was still on the phone with her dad when Peter got into his car. “Want to talk to him?” Martin asked Sam.

She said yes, even knowing her Dad-Dad hates phones. “How you doin’, Dad-Dad?”

He chuckled. “Well, Luv, I thought I was going to get away,” he said, “but they caught me.” Hours walking in the hot sun, no hat, badly sunburned, no water,  tired and confused, he was still ready with a joke. Just after seven Martin brought him home. “I’m in trouble, aren’t I?” he said.

He hugged me so tightly I feared for my ribs. “No, not in trouble, but Steps. Will. Be. Taken,” I said, raising my left eyebrow to high-threat-warning level. He shook his head and gazed at the roomful of people without seeing them.

“Why did I do that, where did I go,” he asked over and over.

“If you don’t know why, then no one does,” I said, “and where you were is a mystery to all of us.”

Steps have been taken. Leslie installed door alarms that screech when the doors are opened and I’ve chosen a bracelet-style gps that will help me keep track of him. He’ll hate it.

In the meantime, we walk Nobby together. Peter doesn’t like it because he wants to be out in the neighborhood on his own with his dog. I don’t like it either because the half hour they walked was thirty minutes to myself, to read, write, or do nothing at all.

In that one afternoon, our lives changed more dramatically than the day, years ago, when the doctor diagnosed “early dementia.”

From now on the peaks will be ever smaller, the valleys, broader and more difficult to traverse.

Header photo: Victoria Falls, Zambia, September, 2005.
Bottom photo: Alaska Range, Mt. KcKinley in the distance, 2006.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

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Be gentle with yourself, you’re doing the best you can.

Notices for books by, for and about caregivers show up in my email every day. I follow blogs by women  who are caregivers, and by experts who advise them…advise us. The common thread is, be kind to yourself and remember, you’re doing the best you can at a very hard job.

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Monday, Leslie collected Peter at ten for Christmas shopping and lunch. She volunteered for the job. She, and Carolynn too, always lift his spirits and make him laugh with their teasing. I’m sure he enjoyed the day, even though he didn’t remember where they’d been.

After they’d gone, I spent a long hour on the phone straightening out a niggling problem, the sort of thing I despise doing. After that, I thought, I should go to the grocery. But, no, dammit, I would get coffee at Our Daily Bread, a favorite haunt. I’m so glad I did. While I dawdled over coffee and cranberry/orange scone, I read two excellent story drafts by writer friends. Un-in-ter-rupt-ed. I felt a bit guilty that I enjoyed being there without Peter, but I confess, I savored it.

As I was about to leave, a young woman waved from across the room. Stephanie, a gardener friend, worked her way to my table and gave me a hug. “So nice to see you out like this,” she said. “I know how hard things must be, but obviously, you have ‘time off’ today.” She’d just been to Florida visiting her father who has Alzheimer’s too. “I understand what you’re going through,” she added.

Stephanie, with her million-dollar smile and twinkling eyes, helped make my day.

After that, I did get a few things at Kroger’s. While in the card aisle, looking for an anniversary card for my husband, a wheelchair-bound, sweet elderly lady asked me to help her find a Christmas card for a dear friend. I picked out several, but cost was an issue. She really liked an eight dollar one, but wanted something in the five dollar range. I found one with a message she loved. She thanked me over and over.

I hope I helped make her day.

Leslie stayed for a cup of tea after she brought Peter home even though I knew she had lots to do at her house.

She made my day all over again.

This morning, both daughters texted, Today is the shortest day of the year. Won’t be long until time to cut the grass, as my dad always said on the Winter Solstice.

Their reminders made me chuckle and made this day.

 

Header photo: Christmas cookie selection at Our Daily Bread.

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Apples and pears…stairs.

Peter looked at the lunch I was fixing for myself, my usual apple, chunk of Cheddar cheese, glass of milk. “Where did you get the apple?” he asked.

I pointed to the old wooden bowl that has always occupied our kitchen, that is always filled with fruit, and the occasional veg.

“Oh, I didn’t know that was there.” He picked out a piece of fruit, came back to the sink and turned on the water.

“That’s a pear,” I said as he washed it off.

Instantly, he collapsed laughing, his face as red as the apple’s cheeks, eyes twinkling. He hugged me. “I know it’s a pear, silly. I’m not that far gone.” I laughed with him and savored the hug.

That far gone, no, but he is more and more confused by the day, less and less able to find words or remember the simplest things. Still, I was grateful for the moment, the laugh, and the hug!

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Fruit with acorn squash.

Header photo: What a pair, pear.

2016 National Society of Newspaper Columnists’ contest finalist. 

What can I do?

My brain had short circuited. I clutched my head and tried to figure out which problem to tackle next.  Just then, Peter peeked around the door. “Can I do anything to help?” he asked.

My pitiful smile didn’t reach my eyes. “Could you give me some peace of mind?” I asked. “That would help.”

He chuckled. “You want a piece of my mind?” he said.

The tears that had threatened dried up. Just that brief exchange lightened my mood.

Van/AK DSC01354

Photos: Sailing to Alaska (2006)

 

‘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.

Screen Shot 2015-11-15 at 12.24.03 PM

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.

Screen Shot 2015-11-15 at 11.41.45 AM

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

‘In November, people are good to each other…’

I’ve always liked November’s skill at blowing the warm months away with icy jabs, but I didn’t know it was special for anyScreen Shot 2015-11-06 at 4.21.38 PM reason other than Veteran’s Day, our granddaughter’s birthday and Thanksgiving. A surprise delivery of flowers from “The Soul Sisters” a couple days ago changed that. The card was inscribed “Happy National Caregivers’ Month, for the woman who defines caring.”

Me?

I assumed sisters meant Carolynn and Leslie, so right away, I took a selfie and sent them a thank you. Les replied she wished she could take credit, but she could not. Later, Carolynn wrote, “They’re from Robin and me, Mom, we’re soul sisters. Leslie and I are are blood sisters.”  She said she’d never heard of National Family Caregivers Month either, but Robin had.

Leave it to Robin. Carolynn’s best friend is probably the caring-est person I’ve ever known. She’s a go-getter caregiver, a whirlwind, a hurricane.

Peter answered the door when the flowers were delivered. I figured someone was selling something so I was shocked to see a pleasant young man holding a bright arrangement of autumn flowers. “Are you Judith?” he asked.

“Yes-s…”

“These are for you. Have a wonderful caregiver’s month.” I managed to thank him before he bounded off.

Peter’s chin was glued to my shoulder when I opened the card. “Who are they from?” he asked. When I said “Carolynn and Leslie” he wondered why they’d sent flowers? “Is it Clarke with an ‘e’?” he asked. “Maybe there’s another Judith Clarke on this street. Are you sure they’re for you?” he pestered.

I didn’t want to get into an explanation about caregivers, which he wouldn’t understand anyway, so I said, “Even if they’re not for me, I’m gonna’ keep ’em.”

Screen Shot 2015-11-07 at 1.39.16 PM

I kept them.

 

Title: line from In November, a book by childrens’ author Cynthia Rylant.
Leaf graphic: Alzheimer’s Prevention Registry

 

Random kindnesses. Observed. Received.

A young man of twenty-five or so stood in front of me in the quick check-out lane at the grocery. In his right hand he held a plastic bag of groceries, in his left, red roses. When it was his turn he lay the roses carefully on the conveyor. “These are for you,” he said to the checker.

“What about the things in your hand?” she asked.

“No, I already paid for these earlier. The flowers are for you,” he explained. “You said you were having a bad day…”

She was flustered, but picked the flowers up and smelled them. “Really? For me?” She rang them up, he gave her cash and left quickly. She looked at me astounded. “It wasn’t that bad a day,” she said, “but now it’s a lot better.”

Random act of kindness, observed.

Screen shot 2015-02-22 at 10.15.53 AM

Yesterday, following a week of bitter cold and snow, I was out early shoveling walks and driveway. A young man and his mother walked carefully towards me. He was holding her arm. We exchanged “Good mornings” and observations about the cold, then they got into the big gray pick-up truck that had been parked in front of our house, off and on, all week.

I kept shoveling.

Walks fiinished, I was working my way back along the drive when I noticed the truck had returned to the space carved amidst the plowed-up snow. “Hello again,” the man called out. “I thought I should introduce myself,” he said. “Hope you don’t mind me parking there, but I can’t get in and out of my driveway right now. It’s so steep and icy.”

No problem, I told him. Then he asked if he could finish shoveling our drive for me, and assured me it would be a pleasure to help.

I was gobsmacked. “Thanks,” I said, “but I actually like to shovel snow.” I explained we’d moved here from upstate New York and were used to deep snows. “Besides,” I said, “my husband will be out soon to finish this off.”

“You sure?” he asked. I nodded, he wished me a good day, and walked off.

Random act of kindness, received.

Screen shot 2015-02-22 at 3.18.13 PM

When I told Peter about the incident, he wondered if I’d told the fellow that I like toDSC00781 shovel snow. “Yes, and I told him that if you didn’t get outside and do your part, I’d bury you in a snow drift and leave you until spring.” I handed him his jacket and shoved him towards the door.

I knew he’d laugh, and he did.