Do tell! Or not.

Experts in dementia circles advise that people afflicted with Alzheimer’s or other dementias shouldn’t be told about the virus that is ravaging the world.

As I often do, I went against advice.

The last time I was allowed to visit Peter, March 13, I gave him general information about coronavirus.  He listened intently, the way he always did when he understood I had something important I wanted to talk about. He always gets the message—my evil eye does the trick—that I want him to listen and not make jokes. If he can get away with it, he’ll always joke. He asked questions that told me he understood, at least right then, in that moment.

Before I left him that day, not knowing then that I wouldn’t see him for weeks, I stuck a reminder message on his bathroom mirror: Wash your hands with soap and water. “Why do I have to do that? he asked.

“Because of the virus I told you about,” I said. “Soap and hot water are the best way to keep from getting infected.” He nodded as if he understood. Later I thought of several better ways I could have phrased that.

He probably peeled the message off the mirror within an hour or a day. I believe it was better for him to have heard something about the pandemic than to hear nothing at all.

[Dry erase sticky-back tape, by the way, is available in office supply stores and on Amazon. I’ve used it often since Peter has been in memory care. It’s my way to get a message right in front of his eyes. I don’t know if it’s as effective as I’d like, but it makes me feel better.]

He’d asked questions that day and I answered with words I thought would make sense to him. And when, a few days later, we FaceTimed, thanks to Mark, Peter asked where I was. I thought he was asking why I wasn’t there, with him. But, no, he wanted to know where I was physically. I happened to be walking along the street so I scanned my surroundings to show him. But that wasn’t the answer. “She’s walking in town,” Mark explained

That’s all he wanted to know.

During a phone call several days later, I told him that the sports channels were playing previous years’ best sporting events because no sports were actually being played now. “You can watch them if you haven’t disconnected your television,” I said.

On the one hand it’s too bad the tv in the lounge never seems to be tuned to sports programs. Peter is only one person out of 15 others, most of whom take naps in front of “Golden Girls” reruns. He does have his own television, as do some others, but he  “turns his tv off” by unscrewing the cable connection and unplugging the power cord from the so-called locked outlet!  If soccer, rugby, tennis or golf is on the tube, Peter will watch it. Shouldn’t he be able to watch sports instead of “Golden Girls” in the lounge, where the tv is always on, if everyone else is asleep?

I came across the photo below recently. The activities crew sprayed a table in the dining area with shaving cream and asked residents to make designs in it or just enjoy the feel of the slippery soap. There were a lot of laughs while they mucked about and it smelled fantastic. In a way I’m glad Peter didn’t participate, because I can imagine he might have started tossing blobs of suds! Hm, maybe this should be routine, a way to make sure residents wash their hands thoroughly.

A fun way to wash hands, and it smells delightful.

I was able to talk to Peter on the phone today. He understood without me saying so that I hadn’t been to visit because I wasn’t allowed in. He asked about “this thing,” meaning the virus and, among other things, I told him that Prince Charles and England’s Prime Minister both have the virus.”Charles is safe in a castle in Scotland,” I told him.

“And where’s the Queen?”

“Tucked away in Windsor Castle,” I said. Then I explained that most countries have closed all but the most essential businesses. “But, get this,” I said, “the English were so upset that pubs and fish and chips shops were closed, so they made an exception.”

He laughed. “Gotta have a nice pint, right? Chippies? Can’t close them, can they?”

Header photo: A week before the facility closed to visitors, I walked into Peter’s room to see him sprawled, snoring, on his bed, apparently quite comfortable.

 

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

Orange is the new faded blue.

Last January I vowed to spruce up Peter’s dreary grubby room. When he was admitted to memory care ten months earlier I did the best I could at the time, but knew I could do a lot better when I was less stressed and he was more settled. The look of his room was the last thing on his mind during those first unsettling weeks…months. And really, just coping was all either of us could manage for a long time.

Last week, I finally “spruced” aided capably by housekeeping and maintenance personnel.

An efficient young woman had already mopped the floor—even behind the furniture, mind you—wiped down doors, cleaned splotches off walls and washed windows and screens by the time I arrived. All she had left to clean was the bathroom. She held up the grimy blue bathroom wastebasket. “Do you want to keep this?” she asked with a shudder.

“No, it was here when he moved in,” I said.

“It’s gone!” she said.

Then two cheerful maintenance men, Smothers Brothers types, arrived to shuffle the furniture around. They approved my plan and the new dashes of color. “Needed a woman’s touch in here,” one said. I chuckled. The old look was this woman’s touch too, though lacking any appeal whatsoever. When they finished, I tidied Peter’s things and cleared the clutter, so pleased to make good on what I’d pledged to do so many months ago.

What an enormous difference the bright comforter, new Mickey Mouse poster and change to the furniture arrangement made. The orange paisley comforter replaced one I’d bought nearly 40 years ago for eighteen-year-old Leslie. That faded blue relic was way past saving.

I didn’t expect—and didn’t get—a reaction from Peter to the room’s new look when he and Mark returned from lunch. He never was one to notice little things I did around the house—husbands usually don’t—but I felt better for having accomplished my January goal.Sad to say, another goal dating from September remains unmet. I’d thought my plan to revive the gardens outside the area where Peter and 15 others live was a done deal. Flowering shrubs, evergreens, scented plants and bulbs were proposed for planting this autumn to head-start growth and be ready for springtime bloom. Unfortunately, that project is on hold until the new year, not because I didn’t fight for it as much as I dared.

Next time I visit I’ll take the tulip bulbs saved since Peter’s February birthday, Leslie and Martin’s gift to him. We’ll plant them in a big pot to brighten the view outside his window come March. There’s more than one way to get a head start on spring.

 

Header photo: Bright new look to Peter’s room.

 

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

 

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.