Seize the day!

It was more than a year after I placed my husband in memory care before I found a new normal. I’d skimmed across the days, weeks, months in a daze, I now know. Friends said I was doing well, but I knew I was barely hanging on.

But at last, mama’s got her mojo back. Carpe diem.

Almost from the start, I had concerns about certain aspects of Peter’s new life. Nearly 18 months later I realized that the route to change was for me to Do Something.

I made an appointment to talk with one person but ended up in the office of another, a nice young man who had the authority to affect change. When I sat down with him—I’ll call him Mr. L—I had two pages of notes ranging from serious matters like Peter’s refusal to take his meds or take supervised showers regularly to other, superficial items. He lay my top priorities to rest quickly. Weeks prior word had reached Mr. L’s desk that twice I’d found pills lying on my husband’s table. Steps were taken. Peter no longer gets away with his tricks to hide meds, although I’m sure he still tries.

My complaint that two showers a week aren’t enough for anyone, anywhere, anytime, much less my often “fragrant” spouse, was addressed. It’s still a battle for whoever has to convince him, but it’s happening. Who knows, maybe Peter will come to accept his new normal.

When I visited recently, an aide told me Peter had refused to shower that morning, as he had on Friday. “I’ll talk to him,” I said, thanking her for telling me. While we had our tea I told him how upset I was about his refusing showers. He looked like he’d been caught with his hand in the cookie jar, but he continued to insist he didn’t need to shower “all the time.”

I persisted. He held firm. Finally I suggested we play dominos and the best-of-seven winner would make the shower decision. Peter lost. He went to the shower room willingly. Afterwards, he came back to his room arms raised, hands clasped above his head. He looked good, he felt good and he he’d made me happy. “Domino effect” has taken on new meaning. I might have to show the aides how to play the game!

Peter always liked to garden.

Next on my list was the garden that surrounds the wing where Peter and as many as 15 others live. “The front of the facility is very nice, well maintained, welcoming,” I said to Mr L, “but that garden is pitiful. The raised bed is full of weeds and mint. The area is not inviting at all.” He agreed. I also suggested painting the ceiling of the gazebo blue. That struck a chord and Mr. L added that the porch ceilings needed paint too. Yes-s.

Then I mentioned my two occasional gardeners—they help me at home—and asked if it would be OK to contact them to see if they would be interested in a garden overhaul. Yes and yes. Before long they’ll start work on their plan that includes brilliant perennials with compelling scents—lavender, lilac, viburnum—and although fall hasn’t even started, I can’t wait until spring.

The tall black garden fence is meant to contain residents who try to escape, Peter among them! I proposed murals on some fence sections to make them less prison-like. Murals are on the radar with two potential artists lined up.

Peter ponders his next domino move.

When I asked about a table and chairs for the gazebo, snap, they appeared a few days later. I hope other residents and their families enjoy sitting there as much as we do.

How about enlisting student volunteers from local schools and the university to visit with residents or plan entertainment? I asked. Maybe youngsters could write notes to them? Would young children from day care facilities come to cheer the residents? I wondered. Worth trying, Mr. L thought, and before long he’d made some calls and ideas are flowing. Peter loves little children and I imagine other residents would enjoy little children and their antics, too.

My list grows, even as I sit here tweaking this post. At least now I’ve Done Something about things that can be remedied with the right sources and not too much money. I’ll probably make some enemies in this process, but it wouldn’t be the first time. I’m not called Mother Tough without reason!

Header photo: Peter asks if he can help when the garden rehab starts. “You can sweep up every day,” I offered.  He nodded. “I’m good at that,” he said.

 

 

 

2016 National Society of Newspaper Columnists’ contest finalist. 

‘Caregiver’ redefined?

The word “caregiver” in the tagline above bothers me because it really isn’t accurate any more. But the title, Dementia isn’t funny, still works because dementia isn’t funny. Not in the least.

The thing is, I’m no longer my husband’s caregiver per se. For the past 18 months, since he moved to a memory facility, there’ve been are nurses and aides, companions and activities personnel doing what I did at home for years. A care giver I’m not, but I do still care.

I’m no longer in charge of trying to get him to take his meds or take a shower, to change his socks, or brush his teeth. No longer do I drag him to get his hair cut, his beard trimmed, no more do I do his laundry. Still, when I visit I often try to get him to put his clothes away properly rather than stuffed in his shoes or under his pillow. To convince him to change into a clean shirt is almost  impossible. He’ll answer “Yes, dear” and continue to ignore me as he always has. I always laugh because I never could change his ingrained stubbornness and I certainly can’t now! On the other hand, the things he likes to do, sweeping for instance, he’ll do willingly, thoroughly. He leaves no leaves unswept, no blade of newly mowed grass on the pavement.

One afternoon we were sitting in the gazebo when, out of the blue, Peter said it needed a coat of paint. I agreed—that gazebo is very shabby looking. I suggested a blue ceiling, a tradition in the South said to scare “haints” away and possibly even mosquitos and wasps too. I decided to find out if painting was even possible. And it is!

The following Sunday we looked at color chips at Lowe’s and picked some blues— Playful Pool and Vintage Aqua were nice. Later I found the color at left on-line: Benjamin Moore’s Ohio Haint Blue. I favor that because, well, I grew up in Ohio. Both sets of grandparents had blue porch ceilings and none of them had ever been further south than Columbus.

The gazebo hasn’t been painted yet, but I’m confident it will be. In fact, I have it on good authority that the ceilings of the porches will also be painted “haint” blue. I’m lobbying to have the garden benches painted a matching color, and maybe find floral chair cushions shades of blue for the porch furniture.

Meanwhile, I haven’t thought of a new word to replace “caregiver” in the tagline. Peter would probably suggest “the wife”: The wife, Judith Clarke, looks for laughs every day.  He’d laugh himself silly at his joke, knowing I would not!

Haint (haunt) ain’t in my dictionary, but hain’t is.
The latter, a contraction of ain’t and have not. 

Header photo: Peter loves to sweep the porch near his room. Soon there will  be a haint blue ceiling above his head.

 

 

 

2016 National Society of Newspaper Columnists’ contest finalist. 

Shower power.

How I pity the aides who try to get my husband to shower. His jovial personality disappears when he really Doesn’t. Want. To. Do. Something! And he really doesn’t want to be prodded towards the shower by a female aide, or for that matter, by a male aide. I’m reasonably sure he isn’t the only male resident who balks. It’s got to be embarrassing, humiliating, to be led off to the bath room as if they were little boys.

A year ago, early in Peter’s stay in the memory care unit—the best facility around I might add—I complained, rather loudly, that my husband needed a shower. “He stinks!” I announced. Another day I asked if I could try to get him to shower. The answer was yes and I was successful. He stayed a long time and all I had to do was be there. I didn’t help him wash, didn’t help him dress, but I did tell him how “fresh” he was afterwards. He grinned as if to say it was his idea in the first place.

Unfortunately, showers are only scheduled twice a week, for the men at least. Not often enough for anyone, and especially not enough for my pungent husband at any time and certainly not in the heat of summer. Oh I understand there could be staffing issues and I readily acknowledge my husband is stubborn. But good hygiene is absolutely necessary, in my book, clean clothes too.

Peter’s dug-in heels are contrary to the man who sometimes showered three times a day when he was working in the yard. He’d mow the grass, shower, put on clean clothes, go back out, do another task, come back inside…repeat…repeat….

I had quite a laugh last week when I heard that he had two showers on Tuesday—one in the morning overseen by one aide, the second in the afternoon with help from a different aide who didn’t realize he’d already washed and put on clean clothes. Two showers, two changes of clothes, one day! Woo hoo! Apparently, he didn’t object either time and, because he didn’t remember the first one, he didn’t fuss the second time. Blessing disguised.

Friday, the other shower day for the men, an aide convinced him to shower again. When I picked him up at five to go out to eat with Leslie, Martin and me, not only was he clean, but he was wearing clean trousers and the blue golf shirt Leslie gave him for Father’s Day.  Win. Win. Win.

 

 

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

 

Shades of happy.

A neighbor drove by while I was walking the dog one morning. She stopped to say she missed seeing Peter out with Nobby. “I do too,” I said, “thanks.”

“How is he doing?”

“Better than most,” I told her. “We’re ‘lucky.'”

“Tell him Ron and I said ‘hello.'”

Another morning walk and another neighbor, Ann, stopped at the curb. “I’ve wanted to tell you how much I enjoy your blog,” she said. “I help someone who has Alzheimer’s. It’s tough all ’round…” she waved goodbye, then called out, “by the way, love your dog.”

Monday an email reminded me, as if I could forget, that my blog would be featured July 17—today— on the AlzAuthors’ website. Anyone who writes, who longs to be published, who doesn’t care if she ever earns a cent will understand what an absolute thrill this is.

Published!

When I took Nobby out yesterday I was still doing my happy dance from the previous day’s news. Yet another neighbor came along and, when Nobby bounced over for a cuddle, she remarked that her golden doodle was as happy as mine.

Any of my followers who are dealing with or affected by any of the dementias should look at AlzAuthors to read other writers who have advice, ideas or kind words on a subject that affects 500 thousand more people each year in the United States alone. You can learn more about AlzAuthors here https://www.facebook.com/AlzAuthors/  here  https://twitter.com/AlzAuthors and here https://www.instagram.com/alzauthors/

To be published on a national site and, more importantly, to be able to share, more broadly, our experiences, Peter’s and mine, well, it’s intoxicating! “Happy” doesn’t begin to describe my joy.

Header photo: Delicate old-fashioned hollyhock disappeared from my garden years ago. I spotted it recently, tucked among the branches of the Nashiki willow, in a different spot entirely, but still as pretty.

 

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

 

 

He who laughs last…

A number of conversational prompts loop through Peter’s brain — he’s concerned about how tall the trees are, he wonders at the numbers of cars in parking lots, he’s overly curious about what lies at the bottom of a hill behind the facility, and he constantly asks “How was work today?”

“I’ve been retired for 30 years, Peter.”

“Thirty years?” He’s astonished.

“I retired a couple months before Samantha was born, you know.”

“How old is she?”

“Uh-h, thirty!” He shakes his head. “And I’m eighty,” I say.

“EIGHTY?” He collapses with laughter. He sputters, his face is red and tears leak out the sides of his eyes as he collapses against the back of his chair. “EIGHTY?” He slaps his knee as he cackles.

I’m a bit miffed. “Don’t laugh so hard, bud,” I say, “you’re eighty-one!”

His eyes pop and he gasps. “No one told me! How did that happen? Eighty-one?” He thinks for a few seconds, then, quick as ever, says, “We look pretty good, don’t we?” And we both laugh uncontrollably, me at how quick, how sharp his retort, and him at his own joke about our unbelievable, hysterically funny ages.

Header photo: 1930’s era Packard is older than we are. And it’s punctuated with bullet holes.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Laughs aside.

My husband is nothing if not inventive. Over the past year he has created multiple, novel ways to corral his belongings. He’s wrapped his shirts and trousers in the plastic wastebasket liners, he’s lodged his toothbrush in its plastic container along with six tightly folded handkerchiefs, he’s used the tie-backs on his curtains to bind books together.

Like many residents, Peter packs his belongings to go home, sometimes several times a week; sometimes his room is tidy. He’s stuffed underwear in his shoes, and recently he crammed all of his clothes into a pair of trousers. It looked like the bottom half of a scarecrow, I’m told. If I’d been there I would have taken a picture.

Small items regularly disappear — nail brush, wooden pencils, socks — only to be fished out of his pockets an hour, a day, a week later. One day I noticed he had no sheets or pillow cases on his bed. He’d slept on the mattress with the mattress pad as a cover the night before. Didn’t stop him from sleeping soundly, I’m sure.

Lately, I’ve noticed he often wears two, long-sleeved dress shirts. He isn’t cold, he’ll say, he just forgot he already had a shirt on when he got dressed. One day he was wearing two belts, the end of one fastened to the buckle of the other. “Something’s wrong here,” he said with a silly look on his face.

The clever ways he keeps from taking his medications are not funny, but he’s such an impish personality that he gets away with his tricks almost as often as not. The doctor just increased one medication significantly to curb his too-high A1C. Full blown diabetes is knocking on dementia’s door. That is not laughable at all.

Header photo: Peter enjoys the laughs he creates.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

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. 

 

 

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.