Ninety-eight days and counting…

Ninety-eight days have passed since my husband was admitted to memory care, first for a month’s respite then, sadly, as a permanent resident.

Ninety-eight days with ups and downs as stomach-twisting as a rickety rollercoaster ride.

Ninety-eight days of uncertainty, confusion, frustration, anxiety and sadness. And that’s just my list. For Peter, I’d add to those anger, fear, anguish and longing.

Since those first heart-breaking mid-April days — I remember them as very cold, though they were not — the succeeding weeks have glommed together like cheap paper towels. There’ve been bad days and good, more lows than highs, a few baby steps forward, but more giant steps back. Silly me, I thought when someone else took responsibility for my husband’s safety, feeding and care, I would be able to catch up with myself. Not so. But it’s not about me anyway.

Within hours of his admission Peter had a meltdown that prompted a call from the evening charge nurse. Would I talk to him on the phone to see if that would help? Yes, I would. When that didn’t work, would I come to try to calm him? Yes, I did. It took several hours, but he was laughing by the time I left. Oh, I’m no hero, but I generally know which buttons to push. The staff had yet to learn.

Within seventy-two hours he’d gotten out of the facility, even as his ankle bracelet screeched while he walked through the main door. A maintenance man found him behind the building near an area surrounded by woods.

By the third, maybe fourth, week he started to acclimate a tiny bit.

The food, though nutritious, does not appeal to my picky husband. And showering with a female aide hovering nearby is not gonna happen. Without me to nag him about changing his clothes, he doesn’t. Instead of putting his things in the laundry, he hides them in the waste baskets and they’re gone forever. His slippers, leather scuffs, have vanished several times. Once I found the left one in a wheelchair parked outside another resident’s door. A few days ago I found the right one under a table in the shower room. But the left one had disappeared again. Peter isn’t necessarily to blame. Residents in memory care units are notorious for “stealing” from other residents.

Houdini could be his middle name.

Peter advises the cat on how to escape.

No, I really can’t blame him for any of this. No one can know what it’s like to be so confused and disoriented all the time. During his first 12 days there, he’d had relative freedom. But he was quickly moved to the “lock-down” wing after he busted out a second time. He left for an outing with Mark in the morning, but returned to a different room that afternoon. He didn’t even realize he’d been moved. And a few weeks later when we were finally able to move our furniture in to replace the borrowed stuff, he never noticed the change.

So, he’s safe under lock and key…touchpad and code.

Except he isn’t. My husband is an escape artist. He snuck out in my care, and when he wants to get out, he continues to walk out right past the nurses. For years Peter took Nobby to visit the residents where he himself now lives. He knew the code to get into the locked areas and how to get out. Served him well when he was the one on the inside. Frankly, I laughed when I heard that he remembered the code. He can’t remember names or places or much of anything at all, but numbers? His engineer’s brain still computes with reasonable ease. Then, too, he can read. There’s a sign on each locked door that says: Press for 15 seconds and door will open—fire code requirement.

It’s all about control.

From the first days he looked for ways to maintain control. Leslie and I set up his first room and made it as homey as we could. It was a large attractive room with a pleasant outlook. He very quickly rearranged things to suit himself—he hid the family photos, stacked books and puzzles in a corner, and put his tooth and hairbrushes in the little refrigerator that was left behind by the previous occupant.

Less than two weeks after he was moved to the more secure area, he started conjuring more creative ways to dominate his surroundings. He folds his clothes and conceals them in pillow cases, then secures them with his belts or wrapped in his shirts. Lately he’s wrapped everything, gift-like, in towels or sheets. He stashes handkerchiefs in the travel toothbrush holder he requested, not for his toothbrush, but to conceal whatever he could stuff into that little green cylinder. He hid family photos underneath a framed picture of his dad.

In more recent weeks he started taking the screens out of his windows. Almost every evening he disconnects his television, but two days ago he hid it. From himself or from me? I found it and hooked it up again, even though I always say I won’t.

Days 94-98 have been more troublesome. No matter howfrustrated I get, I know Peter is a hundred times more frustrated—he isn’t to blame for his shenanigans. I tell myself that while I bang my head against a brick wall.

2016 National Society of Newspaper Columnists’ contest finalist. screen-shot-2016-12-07-at-10-14-53-am

There were thirteen from our group of  twenty-seven at lunch last week. We usually cause quite a ruckus, chattering and laughing the way ladies who lunch do. Wednesday was no different.

At one end of the table, four of the six of us talked about dementia, more specifically the dreaded “A” word, Alzheimer’s Disease.  What I’m experiencing with my husband now is only one view of what others have experienced with their loved ones.

After I got home I tried to remember how many of the thirteen had been, or still are, on the same one-way road I’m on. Seven! Seven out of those thirteen women have cared for, suffered with, and lost or are losing mothers, sisters, aunts, brothers, husbands. Three more in our larger group are affected in one way or another, too.

There’s no laugh in this post today nor in any of the grim statistics that fall under the umbrella of dementia. But there are these thoughts about the importance of laughter from the Central California Chapter Alzheimer’s Association newsletter:

“There is nothing humorous about dementia. However, laughter can help dementia caregivers and improve the quality of life for those afflicted by the disease. Studies show that laughter boosts the immune system and triggers the release of pleasure-inducing neurochemicals in the brain. In terms of dementia-specific benefits, the greatest advantage of humor is that it provides sufferers with much needed mental stimulation. Humor challenges our loved ones to engage their minds as fully as possible [and] it’s also an effective tool for keeping social links active and reducing…paranoia and agitation that many […dementia patients struggle with.]

— Marcy Oswald, MFTI, Education & Care Specialist

 

2016 National Society of Newspaper Columnists’ contest finalist. screen-shot-2016-12-07-at-10-14-53-am

 

 

Domino effect.

“You know how to play dominoes, Pete?” Bill asked on Wednesday. That question was all it took to wind my husband up after four weeks of down.

Not only did Peter go on and on about the social aspects of an Englishman “going ’round t’pub” on a Saturday afternoon, leaving “the little woman at ‘ome,” he chattered about the game  of dominoes itself. Bill always wanted to learn how to play, he said.

Peter’s sudden change four weeks ago forced me to act. I’d reached the end of my rope, stressed, dithery, muddled, still trying to handle everything myself. Leslie and Carolynn got after me, good daughters that they are. As happened, Bill, who’s been helping Peter for almost six years, suddenly had more available hours per week.

Serendipitous!

Monday, I’d arranged to use more of Bill’s time and provided a list of ideas and hints to guide him. In spite of Peter’s usually cheery persona, he isn’t always an easy client. And there are a lot more things to be aware of these days. His confusion has amped up.

So Bill was primed about dominoes. He no sooner mentioned the game than I began to look for our set. “It’s really easy,” I said, “but Peter can keep track of which ones haven’t been played. I just play what matches.” He laughed.

The two were out longer than usual Wednesday, while three of my friends came here for a lunchtime meeting. We did have some business, but more importantly, we laughed…a lot! It was a good time.

That evening, Bill texted to ask how Peter had seemed when he came home. “He was great,” I texted back. “You struck a chord mentioning dominoes.  More like himself than he’s been since that time…four weeks ago.”

The rest of the week was mixed ups and downs, but that one big, bright UP on Wednesday made such a difference.

Today we played dominoes, Peter and I. No surprise…he won…best of three.


screen-shot-2016-12-07-at-10-14-53-am

2016 National Society of Newspaper Columnists’ contest finalist.

‘…my brain was a jumbled mess and I couldn’t remember what number comes after potato!’

My husband is —was — a math whiz. Dementia overloaded his brain more than ten years ago, but every now and then, it reboots.

screen-shot-2017-02-06-at-11-47-05-amThis puzzle showed up on-line a few days ago.  If you can solve this, you are a genius, it read. I showed it to Peter. “I’ll bet you can do it,” I said, “and you know I can’t!” I added. He laughed. He knows how absolutely hopeless I am at math. I left him to it, pencil in hand.

Within minutes he was done. When he tried to explain how he’d arrived at the correct answer, he lost me, not only because numbers muddle my brain as if it’s being whirled in a blender, but also because he can barely put sentences together any more.

I’d copied the two possible ways to solve it, but I didn’t even understand how to apply either solution. Here’s what Peter did:

img_4779

You are a genius!

Interestingly, he keeps a scrap of paper by his chair that shows the way he figures out how old he is. I’m not smart enough to understand that either. First, he looks at the newspaper to see what year it is: next to 2017 he writes 17 and underneath, 62; to the left, 1938. Simple subtraction, 2017 minus 1938 should tell him he’ll be 79 this month. (Even I can manage that!) But then he adds 17 and 62 to get 79, too. See, I don’t get that at all, but he does and that’s all that matters.

There are probably several geniuses among my followers who can solve the “genius” problem. I am in awe of you. But I’m more in awe of my husband who did it so quickly, yet he can’t remember where the dog’s leash is kept, where the salt and pepper live, nor how old he is.

2016 National Society of Newspaper Columnists’ contest, second place, blog category.

screen-shot-2016-12-07-at-10-14-53-am

 

 

Headline quote: Tara Sivec, USA Today best-selling author, Seduction and Snacks.
Header photo: Performance  Brain Training

He doesn’t know what he doesn’t know.

Did anyone hear me yelling a few days ago? I yelled out of frustration with myself as much as with my husband…

…because once again he managed to confuse our so-called “smart” tv by pushing the wrong buttons on the [cable] remote. I’m not smart enough to know what’s wrong, so I can’t fix it.”

After stewing about the problem for days, I finally got smart and photographed the television screen with its various error messages. Then I gathered up the remotes and my smart phone and went to the shop where we bought the tv. I explained how the remote got bungled and asked if there was such a thing as a remote with on/off and channel/volume choices only? I laughed, but I wasn’t kidding.

The owner wasn’t kidding either when he suggested he might be able to disable the two problem buttons so they wouldn’t function at all.

“Go for it,” I said. Five minutes later he was done. I giggled when he told me he’d taped over the tiny printed circuit boards. “My husband was an electrical engineer for forty years,” I said. “At one time, problem-solving, printed circuit boards and codes were his expertise.” I put my sunglasses on quickly to hide the tears that flooded my eyes at the irony.

That evening, even with television viewing possible again, I suggested we go to a movie. “‘The Man Who Knew Infinity’ is playing,” I said. “Remember, we saw the previews…about a math genius. You thought it looked interesting.”

Peter nodded. “I do remember. Yes. Let’s go.” He was as surprised as I was that he remembered, but he’s always been numbers man. He can still count backwards by sevens from one hundred easily, a skill that is rated on Alzheimer’s assessments.

The movie was absolutely engrossing. One review gave it two stars, but I gave it five on a four-star scale. I peeked at Peter throughout. He never once nodded off. Every so often I asked if he understood what they were talking about because I certainly didn’t. He did.

On the way home, I asked again if he really understood all the terms — partitions, proofs, integers, numbers theory — gobbledygook to me. He laughed. “Course I did,” he said, “but that was way before my time.”

The brilliant minds of Srinivasa Ramanujan and G.H. Hardy (Dev Patel and Jeremy Irons) are beyond my ken, but I appreciate their story. I cried at the end. I almost never cry at movies.

The five partitions of the number four
1+1+1+1  |   1+1+2   |   1+3   |   2+2  |  4