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. 

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. 

 

 

Aside

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. 

 

 

 

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. 

Aside

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. 

 

 

Don’t deal him out.

When I left Peter one afternoon, I stopped to chat with the wife of another resident. We compared notes, as we’ve done before, and agreed that the year just past, for both of us and our spouses, had been terrible. She’s a woman who tries to look on the bright side too, so we’ve shared laughs over the months as well.

I told her I’d just reintroduced Peter to cribbage and that it had been more successful than I expected. “He remembered enough about the game to play fairly well,” I told her. “I never could play very well, so he’s at my skill level now.” 

“Well then, what did you think about our husbands’ poker game last week?” 

“Poker? Peter doesn’t even know how to play!” I was astonished. At Christmas the family poker players drag him to Leslie and Martin’s kitchen table and coach him.

She explained that our husbands and another resident had played one afternoon. “They had beer, chips and dip, laughed and carried on as if they’d been pals for years. They seemed to know what they were doing.”

“Could they hear each other?” 

She shook her head and laughed. “Didn’t matter, they had a terrific time.” 

“That’s wonderful! I hadn’t heard about it, but you just made my day!” I drove home with a big smile on my face.

Ol’ Poker Face Pete looks like he’s ready to ‘fold.’

2016 National Society of Newspaper Columnists’ contest finalist. 

 
 
 
 
Header photo: freepik

‘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. 

 

 

 

 

 

Today was the day.

He knew he knew me but still, he didn’t really know who I was. He couldn’t say my name. He couldn’t say what our relationship was. I wasn’t as shocked as I expected to be when it actually happened. I knew the day would come sooner or later.

Today was sooner rather than later.

Peter hasn’t been able to say our family’s names for some time — Carolynn, Leslie, Samantha, Jeremiah, Martin, Bill — though he recognizes them when he sees them or gazes, as he often does, at their pictures.“How are things in England these days?” he asked. Uh oh, I thought.

What I should have done is explain some little thing about the Brexit crisis. He wouldn’t have understood, but he would have listened, interested. But I said, “I don’t live in England, Peter. I’ve never lived in England.” His eyebrows shot up, and he shook his head as if to clear the cobwebs. His thoughts looped as he asked over and over how things were in England. Finally, leaning close, I asked, “Do you know who I am?”

He bluffed. “Course I do. I could never forget you!

“Mm-m, do you know my name, what we are to each other?”

He gazed into the distance as if the answers might be written in the mist outside. I said his first wife’s name and asked if he thought I was her. He shook his head, but he did ask where she was. I said I only knew she’d moved back to England years ago. “The two of you came here, to Virginia, in 1968,”  I said.

“Well where were you then?”

“In Arizona, getting ready to move to Virginia.” He shook his head again. I was sure he knew he knew me, but he couldn’t say my name. I turned it into a game. “Am I your sister? Your niece? Your grannie? Your mum?” He laughed at my silliness and said no to each question. Then, inspired, I said, “Peter and…J-o-o-o-o-o…?”

He grinned. “JUDY!” His exaggerated wink tried to tell me he knew my name all along.

He hugged me tight and we laughed together.

[The “today” in this post is actually yesterday. I wrote this late last night, but refined it today. Changing all the todays to yesterdays only works in the song.]

Header: Scene outside my window today.