Bright spots in down days.

There have been upsets in the past few weeks that nearly brought me to my knees. I won’t dwell on the details here, now, because there were bright spots that made the period tolerable.

Weeding, usually a chore, gave Peter and me reason to smile. I looked out his window last week and noticed the flower beds had been invaded by tall, prickly weeds that were about to flower and overrun the space. “Let’s go out and tackle them,” I said. He was on his way before I finished my sentence. We worked for an hour and pulled a huge pile for someone else to pick up!

The next day I mentioned to Peter’s longtime helper Mark that Peter wanted to dig up the beds and plant something nice. That very afternoon, by the time I arrived, they’d shopped for flowers and planted them in a large red pot Mark brought from home. A mini-sunflower, blue balloon flowers, and fushia Million Bells now brighten Peter’s view.

Happy in a flower pot.

Another time one of the aides made me laugh when she said that my husband has “favorites” he pushes along the hall in their wheelchairs. The thought that my husband was pushing the “old dears” (a kindly English expression) absolutely astounded me!

Happy on wheels.

Another evening, as he walked me towards the exit, he stage-whispered, “Watch out for ‘im.” He nodded toward another resident who used a walker to toddle along. “‘E’s up to no good.” The other fellow watched Peter out of the corner of his eye, and when Peter drew abreast, they pointed their index fingers at each other and said, “Pow! Pow!”

Happy are six-year-olds playing cowboys.

Another of Peter’s carers was outside watering plants yesterday. “Look who’s out there,” Peter said. His smile was incandescent.

“I see,” I said, “do you want to go help her?”

“I’m going,” he said, and headed to the door. “Oops!” he said and stopped long enough to kiss me. “Bye, luv, see you next time.” He was gone.

Sometimes even “gone” can be happy.

Header photo: A neighbor’s sunny peonies make me smile.

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. 

Mama’s happy when she cries the blues.

Peter’s eyes sparkled, his foot tapped and his lips smiled when he heard the tinkling sounds of Jelly Roll Morton jivin’ on the piano. He recognized the music instantly and that just made my day.

I don’t cry easily, but my husband lit up when he recognized ol’ Jelly Roll and that light-fingered style he had. And I sniffled, no, I cried. I’d finally taken his music player—his Christmas gift—back to him loaded with his longtime jazz favorites from the 1920s .

Ma Rainey did her “thang” and belted out “Black Bottom Blues,” then Al Hirt laid on “Bourbon Street” and Jelly Roll must’ve plumb wore his fingers out all the way from “Doctor Jazz” to “Grandpa’s Spells,” some 18 cuts later.

I asked him if he knew the lyrics or the titles, but he laughed and shook his head no. “I remember the music though,” he said, nodding to the beat. When Louie Armstrong started warbling “High Society,” he attempted to sing along. His imitation of “Satchmo” was still as off key as ever and he bumbled the words as he always did, but he was happy.

Funny, one of his favorite CDs is “Jazz the World Forgot.” My husband may not remember much these days, but he hasn’t forgotten his passion for the sounds of the raucous, roaring twenties.

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

‘Orange juice for the ear.’

This observation about the late Oliver Sacks’ book Musicophillia (2007) struck just the right note when I read it:

… music can animate people with Parkinson’s disease who cannot otherwise move, give words to stroke patients who cannot otherwise speak, and calm and organize people whose memories are ravaged by Alzheimer’s or amnesia.”

Before Thanksgiving last year, I mentioned to our grandson Miah that I’d been searching for a very simple device that would enable his granddad to hear his favorite music. A few weeks later, he posted an article on Facebook that explained  the positive effect of music on the brains of people with dementia. Carolynn saw our Facebook exchange and within few minutes she forwarded a link to me. She was excited. “I think this would work for Poppy,” she wrote.

Fifteen minutes later I was in The Alzheimer’s Store and, yes, she’d found the perfect solution. The Simple Music Player is a reinforced, sturdy little thing with the retro charm of the radio that sat on my nightstand when I was a teenager. Lift the lid to start the music, push the big black button to change to another song, and shut the lid to turn it off. It comes loaded with familiar 1940s big band sounds and songs. Plus, a USB cable is included so that the caregiver can add favorite music. And, I should add, it’s Made in England.

Before I went to bed that night, I’d ordered the player. A few days later it was on my doorstep. Quite honestly, I wanted to keep it! The sound is outstanding, it is very easy to use and, best of all, neither I.D. nor password are required to use it. But I did put it under the Christmas tree for my husband.

Unfortunately, I have yet to download Peter’s favorite old albums, but I’ve got his extensive list at the ready: Jazz that the world forgot, 1920’s classics; The best of Jelly-Roll Morton; Ma Rainey’s Black Bottom; Louis Armstrong, The Hot Fives; Absolutely the Best of the Blues; Count Basie One O’Clock Jump; Bessie Smith; Cab Calloway Forever Gold; Armstrong and King Oliverto name just a fraction of the hundreds in his collection.

Christmas night, I managed to entice Peter to dance to one of the oh-so-danceable songs. It was the first time in years that we’d “tripped the light fantastic.” Our intent was good, but our feet were laughably clumsy.


Be sure to turn sound up.

Music can lift us out of depression or move us to tears—it is a remedy, a tonic, orange juice for the ear. But for many of my neurological patients, music is even more—it can provide access, even when no medication can, to movement, to speech, to life. For them, music is not a luxury, but a necessity.” Oliver Sacks (1933-2015)

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

 

 

 

A down day turned up.

Early morning and already there were signs that it was going to be a down day. The salt and pepper shakers were in the butter compartment of the fridge, mustard, in the silverware drawer, and we were nearly out of bread. Nothing gets my day off to a worse start than having to do without toast. Lately, Peter has been eating almost a loaf a day — two pieces of toast, three sandwiches for lunch, and at least three slices with jam at various times during the evening.

Down.

But I eked out two slices from the end of the loaf.

Up.

When Peter came downstairs, he turned the television on first thing, as usual, but the growling that followed was not on “Today.” I ignored him for a few minutes hoping he’d figure out that if he stopped pushing all the buttons the remote would “catch up” to his impatient demands.

Down.

But I gave in. He looked up with a silly smile and continued jabbing buttons. “Um, were you actually going to call somebody? That’s the phone!”

He shook his head and laughed and so did I. Might as well.

Up.

Later I asked if he wanted to go shopping. He was waiting by the door before I changed into my best jeans. My husband is always ready to “go to the shops.” No sooner did I back out the drive than he started asking, “Any news from upstate?” Even though I’d said no, he continued, “Do they have snow?” The same questions six times in seven  miles. I counted.

Down.

I parked midway between TJMaxx and Barnes & Noble. A way to get in my morning walk and finish Christmas shopping in one. I found what I wanted quickly and checked out. We headed in the general direction of the car to stow my purchases. Ah, but where had I parked? Peter really enjoyed that laugh — up — as we sloshed and searched — down.

Version 2At the bookstore, I found what I wanted so fast that Peter was disappointed. He loves to wander at Barnes & Noble. “How about a coffee?” I asked to make up for my quick trip. I ordered a java chip frappacino — up — and asked if he wanted his usual cappuccino? “Yes, whatever that is,” he said. For the twenty minutes we sat over coffee he asked, four more times, “Any news from upstate?”

Down.

When we got home, Peter looked at the clock and yelped, “It’s gone one! Have I had lunch?”

Down.

“No, just coffee, nothing to eat. Make a sandwich.” He liked that idea. I went to the basement to wrap Christmas presents. When I came up, he had his Santa hat on and was working on a 500-piece puzzle. He’d marked out its one-by-three foot dimensions carefully, correctly.

Up.

img_4517Header: Peter puzzles.

2016 National Society of Newspaper Columnists’ contest finalist. 

No such thing as too much chocolate.

Being a caregiver to an adult who has some form of dementia is a bit like being the mother of a two-year-old.

We’d been to Lowe’s, stopped off for a coffee and scone, then went to Home Depot. I was on a mission to find a new exhaust fan that met certain parameters. Quick in and out, that’s my motto for running errands. I was speeding through Home Depot when I realized Peter was no longer tailing me.

Screen Shot 2016-05-14 at 2.39.47 PMI turned around a saw him studying a display. It was a rack of candy bars. He saw me coming, gave me his innocent little-boy smile and said, “Just seeing what there is.”

“You just had a huge scone…” I said, ever the grumpy mum.

“That was ages ago.” (Fifteen minutes is a long time in dementia years.)

I had one more stop before heading home, but because Peter seemed in such a good mood, I suggested we detour to the shoe store. “Do I need shoes?” he asked.

“You’ve complained for weeks you ‘have no shoes,'” I said, steering him to the men’s section.

“What am I looking for?” he asked.

“Replacement for those worn brown ones,” I said.

“I like them…”

“We’ll find some you’ll like just as well.” I zoomed in on the style he’s always favored, something between a sneaker-look and a semi-dressy casual shoe.  I pulled several out.

“What size do I wear?” he asked.

“I don’t know! Eight, I think,” I said, frustrated because he didn’t know. He tried them on, but became obsessed with finding his toe under the leather. “Lace them up, then walk in them,” I said, as I would’ve said to a toddler.

“But my toe!”

“Does it hurt? Aren’t they comfortable?”

“No, doesn’t hurt. Yes, they’re comfortable.”

Hallelujah. “Great! Let’s buy them in black too. They’re really nice,” I said.

He grimaced. “No, not the same shoe.”

I tried the rationale I use on myself. When I find a pair of shoes I like, and if they are available in another color, I buy both pairs. I added that the second pair would be fifty percent off.

We bought one pair.

I was so exhausted I went directly home without finishing my errands. Maybe if I’d bribed him with a Hershey bar?

Screen Shot 2016-05-14 at 5.31.04 PM

Chocolate-dipped Adidas Yeezy 750 Boost sneaker designed by Kanye West.

Header: Shapeways edible chocolate shoe

2016 National Society of Newspaper Columnists’ contest finalist. 

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

Header photo: Violas overrun my flower beds.

2016 National Society of Newspaper Columnists’ contest finalist. 

Chips, a food group unto itself.

Fish ‘n’ chips. Egg ‘n’ chips. Sausage ‘n’ chips.

I could rotate those three meals every night of the week and get no complaints from my English husband. Not only are they are his favorite meals, but he forgets from one meal to the next what he ate the day before. If I added in bangers and mash, bubble and squeak, and roast beef and Yorkshire pudding, I’d be a star.

Screen shot 2014-09-13 at 11.16.35 AMIn England, chips (French fries) are as iconic as a nice cuppa tea. Brits eat chips with anything. We’ve even had them served with pizza and a spicy Indian meal.

Around here, Red Robin has the best fish and chips, Peter says. We went there for lunch recently and sat at the bar, as always. The bartender, a sweet young woman and one of his favorites, asked, “The usual?”
Peter turned to me. “What beer do I have?”
I said Guinness, but the barmaid shook her head slightly. “Only in bottles.”
“What do you have then?” he asked as he got up to look at the taps.
She was already drawing a sample of another beer. “This is the one you like,” she said, as she handed it to him to taste.
“Yes! A pint of that,” he agreed, licking his lips.
I whispered to her, “Do you do that every time he’s here?” (Peter and companion Bill have lunch there at least twice a month.) She nodded yes, but flapped her hand as if to say, that’s OK.
images-1But then he confounded both of us when he ordered a burger and chips, instead of fish and chips.

While we were eating, a waitress came by and tapped him on the shoulder. “You haven’t been in for a while,” she said with a giggle. “We’ve missed you.”
“I’ve missed you too, darlin’,” he said, as I knew he would. “Why aren’t you behind the bar today?”
They were short a waitress, she explained, so she had to fill in.

Then along came the manager. “Whad you doin’ to me, man?” he asked. “I don’ know who you are when you don’ order fish and chips!”
“Oh, I’ve got ‘the wife’ with me this time,” he said, as if I forced him to have a burger instead of marginally better-for-him fried fish. He knows how it riles me to be called the wife, and he does it to see my eyes shoot sparks. Of all the things he’s forgotten in recent years, he hasn’t forgotten that.

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Header photo: Holly Exley Illustration, London, UK.

2016 National Society of Newspaper Columnists’ contest finalist. 

Rhubarb! Rhubarb! Rhubarb!

Peter loves the stringy vegetable that is served as a dessert: in rhubarb pie,   rhubarb Screen Shot 2015-10-30 at 9.39.50 AMcrumble, Screen Shot 2015-10-30 at 9.31.15 AMrhubarb coffee cakes, rhubarb compote and rhubarb sauce, to name just a few. And, if you’re English, like my husband, you like your rhubarb sauce with Bird’s Custard.

I love rhubarb too. Our neighbors keep us supplied throughout the season. The final bunch Jeff delivered was last evening’s dessert. Peter ate his right after dinner. When he offered to serve mine, I said I’d wait a while.

After the evening news I went upstairs to take a shower. The shower didn’t take long, but I fiddled around straightening my closet and folding the last of the laundry. When I came back down, ready to watch “The Great British Bake-Off,” I was ready for my dessert. Peter was washing the pan I’d left it in.

“Where’s my rhubarb?” I asked. “Did you eat my rhubarb?”

“Don’t remember,” he said. “Sorry.” Humph, I don’t think he was sorry — he was licking his lips — but I know he didn’t remember!

I can forgive a lot of things, but eating my rhubarb isn’t one of them. From now on, I’ll have to camouflage my portion somehow. I already write our names on bananas, and mark the McVitie’s Digestive biscuit packages “his” and “hers.”

Rhubarb is often paired with strawberries in pies, though there are those rhubarb purists who consider the combination a “rather unhappy marriage.” Peter and I agree with the purists.

Header photo: Local Roots Food Tours, Sacramento, CA
Rhubarb pie photo: Nubi, Heidi Murphy 6/4/15
Other photos: webcam grab

2016 National Society of Newspaper Columnists’ contest finalist. 

Yet another good thing.

My husband has always been a picky eater. He has always insisted he is selective, not picky. As long as there’s meatpotatoesveg on his plate, he’ll clean it, he says. If there’s gravy, so much the better, even lumpy gravy! He doesn’t like things that sound as if they were bought at a health food store — quinoa, wheat germ, tofu, edamame — although he has eaten all of them unknowingly, and liked them.

The list of things Peter will not eat is varied: tomatoes, the teeniest, eensiest bit of fat, cucumbers, pasta, rice, cheesecake, peanut butter, mac and cheese, cornbread, dill pickles, quiche, cranberries…I could go on.

Nowdays, because he doesn’t — can’t — cook anymore, he eats what’s put in front of him. This change allows me to fix meals I like more often instead of always catering to the meatpotatoesveg dictum.

Used to be, if I fixed pasta, which I love, he’d mutter and growl. Now we have it once a week or so and he doesn’t say a word. Maybe he doesn’t remember he never liked it, or maybe he likes it now, I don’t know. Other meals, I’ll sometimes fix two green veg, no potatoes, and substitute beans for meat. Not. A. Whimper.

Recently I prepared turkey cutlets and quartered red potatoes marinated in lemon juice, rosemary, and olive Screen shot 2014-10-30 at 6.05.01 PMoil. Cranberries I cooked in hard cider, with a smushy apple, and a bit of sugar. Yummy. I nearly fell off my chair when Peter not only cleaned his plate, but carefully scraped out the tiny bowl of cranberries I’d given him and served himself some more!

He pointed to the bowl and said, “Are they good for me?”

I nodded, he smiled, then licked his spoon.

Thanksgiving is upon us. Cranberries!

Another good thing to be thankful for — check

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