The worst weeks of my life so far.

I still remember how wrenching it was to drop eleven-year-old Carolynn at her first sleep-away camp. And I still remember taking Leslie to college, moving her in, and then watching her walk away from me without looking back. Those days still grip my heart.

If you’ve experienced similar days, similar pain, I can tell you they were nothing, nothing, compared to the day you deliver your spouse to a memory care unit for what is supposed to be a month’s respite for both of you.

My husband’s long, long journey from “mild dementia” to “can’t rule out Alzheimer’s” to “probably Parkinson’s, too, with Lewy Body disease” has lasted 15 years. Fourteen-and-a-half of them relatively easy, I now realise. My panicked uncertainty during the time since February when he had a bad fall, followed by weeks of rapid decline have been exhausting, wearing, and sad for me and the rest of the family.

Not so for Peter! The one good thing about dementia — any of the dementias, I suspect – is that the afflicted doesn’t remember anything from one minute, one second, to the next.

After those bleak early February days, I decided to try respite care because I could not carry on without a break from the constant crises. No matter how many times I explained to Peter that he’d be in respite care for a few weeks — a therapeutic lie meaning “at least a month” — he never grasped it. I based my explanation on the number of times he’d fallen since February. He had no memory of that, even with photos as proof, nor of any of his recent falls. “I can’t lift you,” I said, “can’t take care of you when you’re like this.”

Leslie and I had already checked local respite care. The best choice was obvious. Even so, Peter and I coasted along for another few weeks or maybe a month. Push came to shove in April. Peter fell again while we walked Nobby one evening. I’d convinced him to hold my hand and use his cane with his other hand when, suddenly, he smashed face first onto the street. He didn’t have the strength to get himself up and I didn’t have the strength to lift him. I’d been so diligent about keeping my cell phone with me, but we’d just come home from a nice dinner out, and my phone was still in my purse…on the kitchen counter.  Luckily, a young woman came by and helped lift him, then offered to get her car to take Peter home.

Not even seconds after it happened, nor at anytime since, did he remember falling. It was time.The hours, days, weeks, months whipped by so quickly since February while I struggled to keep things “normal.” Yet, the same period oozed too. Years could have passed while I was stuck in a molasses swamp.

I wouldn’t wish any of this on anyone.

The awful April day when Peter, Leslie and I met with the facilities’ director of nursing, the administrator and others is a blur. Though my husband didn’t understand what was going on, he did know he was the center of discussion and he hates that. He understood just enough to know he didn’t like what was happening. His Mt. Rushmore persona was apparent. I reached for his hand, but he pulled away angrily.

Between then and five days later when he was admitted, I prepared for his move as if I were taking him to college or to camp. I bought him new underwear, new socks, tubes of toothpaste, cheery yellow sheets, and bright blue towels. I packed favorite picture books about England, pictures to hang on the walls, photos to put in a drawer, his special tea and coffee mugs, jigsaw and crossword puzzles, pencils, pens and paper, Sudoko books. I washed and ironed his shirts and trousers and polished his shoes.

Leslie and Martin helped with the move-in. Stoney silence from Peter as Leslie and I gabbled and tried to lighten the mood. Martin took Peter to lunch while Leslie and I finished making the room as homey as possible. We added finishing touches the next day. Peter was almost jovial. He managed a few silly jokes and we breathed sighs of relief.

By the time all the paperwork was completed two more days had passed and the meter was running. A private room in the best facility around doesn’t come cheap. Thank goodness for long term care insurance. When I finally took my husband to be admitted, he was practically mellow. Whew.

Ah, but that was only day one. A Tuesday.

Header: Peter in the garden surrounding his new home-away-from-home. The fence, he has since explained with a twinkle in his eyes, is climbable!

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

 

 

Just call me Lipton and pour the hot water.

Early in Peter’s the long journey, people warned me, Take care of yourself, take it easy, don’t wear yourself out. They were right, but I didn’t take their advice.

Several months ago, I added more hours to Peter’s two helpers’ schedules to give myself some time off. With those hours I run errands without worrying about getting home to Peter who can’t be on his own for more than a few minutes at a time. Really, he can’t be on his own for any time at all. And I’ve been able to schedule massages every other week, or go to the bookstore and sit with coffee and a new book for a whole hour.

I’ve wondered, how long can I continue doing this 24/7? What would happen to Peter if something catastropic happened to me?  He couldn’t live alone and he would make life miserable for himself and a caregiver without me as a buffer. Carolynn and Leslie have always said they’d take turns taking care of one or both of us. I know they mean it, and they would do it too, but at what cost to them? These are the kinds of questions that keep me awake nights.

I’ve known for months what I must do, but I played ostrich. I should have done my research, should have put my husband’s name on lists. The multiple choice answers to my question include Assisted Living? Nursing Home? Memory Care? Private Care Home? Additional Care at Home?

When it comes down to it, assisted living is what Peter has now. I assist. In any case, he would not qualify now — he is cognitively impaired, he wanders, and he’s close to late-stage Alzheimer’s.

Nursing homes conjure thoughts of elderly residents parked at the nurse’s station in wheelchairs. No thank you. He doesn’t need nursing care, he needs loving care.

Additional in-home care would likely expand quickly to ’round-the-clock. It may yet come to that, but that would be the last resort. My husband is uncomfortable, always has been, with too many people around, and I’m a loner too.

What about a “memory care” unit at a nursing home, I wondered? Six weeks ago, when I began to scribble thoughts for this post, I wrote, …no need yet for that level of care.

That was six weeks ago.

Since then, my emotions and any rational ideas I might have had have tossed in my head like wet blankets in a malfunctioning dryer — around and around, flip and flop, toss and turn.

After Peter’s accident four weeks ago (two previous posts) I understood what my friend Lourie meant — she has faced these questions too — when she said, “You’ll just know when it’s the right time…” to put him into care. Or when Karen, owner of a caregiving service, said, “Remember, you ‘have Alzheimer’s’ too. You have to choose what is best for Pete, and for yourself.” And I took comfort from something gerontology professor Dr. Elaine Eshbaugh wrote in a blog, “You are just a person — doing the best you can under circumstances that aren’t great. And you’re not alone.”  Others I begged answers from had similar thoughts — don’t feel guilty and don’t let anyone tell you what to do unless they’ve walked in your shoes.

So, after Peter fell on his face, literally, I was smacked in the face figuratively. I had not done my homework and I was not prepared  for the awful days that followed. Somehow, in the swirl of emotions, I thought of respite care, something I hadn’t even considered before. Leslie went with me to visit likely facilities. Respite seemed like the right answer for the short term. Rescue for both of us. Peter would get good care in a more pleasant setting than I would have imagined, and I could put my crumbled self back together again.

I started the process, I talked to family and friends and all agreed it was a good idea. They knew Peter’s state was precarious after his accident, and how exhausted I was. Then, then, Peter’s awful journey changed course. He morphed into the person he was several years ago, before his brain was ravaged by rampant plaques and neuro-tangles

Again my own brain tumbled with conflicting thoughts, but after further counsel from friends, I put respite care on hold. Our life is now paused in that blissful place where romance first bloomed.

A delay was the right thing to do.

“A woman is like a tea bag — you can’t tell how strong she is
until you put her 
in hot water.”  Eleanor Roosevelt

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

 

‘I believe that tomorrow is another day & I believe in miracles.

Three weeks ago my husband’s already steep downward trajectory propelled him to a crash-landing in a muddy ditch — “The second worst day of  my life so far” The ten days following were worse, but then darned if a miracle didn’t happen.

Cruel disease that Alzheimer’s is, I know this upward swing won’t last, but I’ll enjoy it while it does. Peter can’t put his feelings into words,  but I see the twinkle in his eyes again.

Several things happened to precipitate the miracle…series of miracles really. First, ten days ago, his feet slipped out from under him while he was trying to get dressed in his closet. That doesn’t sound like a good thing, but it was.

Until that day, he’d been barricading himself in the closet. Not by locking the door, rather by pulling out a drawer in the built-in dresser, thus jamming the door. He did not want me to help him get dressed no matter how long it took him. “What if you had a heart attack or a stroke or something? I wouldn’t be able to help.” I said. He snarled. Later I removed the drawers and hid them.

But that day, with no barricade and him flat on the floor, I was able to shove my way in by using the door to push him out of the way. I couldn’t lift him though, and he couldn’t get up by himself. I grabbed a towel from the laundry basket, Peter shifted his bum onto it, and I pulled him across the floor to a chair. He managed by himself then.

When he fell, I think he jarred something in his brain back into place. After we both rested for a bit, I told him he smelled like road kill on a July day, and he needed to shower. Once clean — I did wait outside the door to help if need be — he came downstairs hungry for the first time in ten days. He ate his usual big lunch and was hungry again two hours later. He was actually quite chipper!

That evening, Carolynn and Bill arrived to help us for a week and, not incidentally, celebrate Peter’s eightieth birthday. He perked up when they arrived, though he grumbled that I hadn’t told him about their visit.

From that day to this, his “Parkinson’s shuffle” ceased and he began to walk almost normally. He goes up and down the stairs easily, still holding the bannister, but not with the two-handed white-knuckle grip like before. Once again, his steely determination prevailed, and his clenched-teeth warnings, Leave-me-alone. I-can-do-it-myself, were validated.

There were a lot of laughs at his new normal, but none more so than his telling Carolynn and Bill over and over about the times he hitchhiked in big trucks to get up and down I-81 or back to college in England. The story varied as often as he told it.

He was surprised by his birthday, didn’t realize he’d reached 80, nor that the pile of presents were for him. He kept us in stitches while he opened them. The family gave him thoughtful things he enjoys and cards he looks at every day. I, ever practical, told him the accessible toilet Bill and Martin installed was a present from me. He was pleased. In addition to a selection of tiny  French pastries in lieu of carrot cake which he no longer likes, I gave him a fake cactus similar to the type he raised years ago. He thinks it’s real and waters it several times a day. If it were real, it would have drowned by now. Makes me a laugh to see the puddle and gives him something to do. I don’t remind him it’s plastic.

Most miraculous of all, he calls me “Luv” again the way he used to do. He gives me hugs and kisses, about 23 so far, and murmurs, “What would I do without you?”

I’ve thought about that, but I don’t dwell on the possible answers. For now, I’ll hang onto an Audrey Hepburn quote for as long as I can: “I believe that tomorrow is another day & I believe in miracles.”

Header: The fake cactus looks as real as the real begonia nearby.

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

 

 

Be careful what you wish for.

Faithful readers will know that I’ve carried on for months about my husband’s constant abuse/misuse of his PAL Search & Locate GPS watch. Almost from the first day six months ago he figured out how to get it off.  He used brute strength to force the supposedly secure clasp to release.

“Ooo-o, you are strong,” I might’ve said, batting my eyes to make him laugh at my use of his old joke. But I didn’t say it, nor did I laugh.

I nagged endlessly, trying everything I could think of to get him to leave the darned thing on until I took it off. He wasn’t bothered by how much it cost nor that I’d had to order a new clasp. When I explained I just wanted to keep him safe, to have a way locate him if he got lost again, he tutted and argued that he was safe and he did not get lost.

By chance, the situation resolved itself. One evening, just after the holidays, I noticed that he had not only removed the GPS watch, he’d also removed the watch I’d given him for Christmas several years ago. Both were on the table beside his chair. I picked them up, put the high tech one in the charger on my desk, and lay the trusty Timex nearby.  Then I forgot about them.

The next morning when he was getting ready to take Nobby for his walk, I remembered. Without really thinking about it, I put the GPS one on his left wrist. He didn’t grumble at all, nor did he ask about his “real” watch. He wore his GPS “pal” all day, and in the evening he held his wrist up for me to remove the thing properly.

He’s done that ever since. He doesn’t remember his other watch, and doesn’t seem to mind wearing the chunky one.

A frustrating problem solved serendipitously.

You’d think I’d be happy or at least relieved, but I’m not. He’s forgotten what was such a  monumental grievance for both of us. Another step down the down staircase.

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

‘…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.

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

‘A good time to laugh is any time there is.’

“Any news from upstate?” Peter asks. It’s dinnertime and that’s the question he repeats over and over during our meals.

“No,” I say.

We listen to the evening news while we eat, me grumbling at the goings-on in Washington, Peter listening carefully to the weather report.

“Any news from upstate?” he asks again.

I start to shake my head, but instead, decide to try a different response. “No,” I tell him, “but Leslie and Martin spent the weekend at the river.”

“Really? In this…?” he asks. He nods his head towards the fog outside, the rain-streaked window. “What did they do?”

I laugh. “We were there, too,” I say. I’d hoped he might remember the two days, the cozy fires, the good food, log-wrangling with Martin, Leslie and me laughing hysterically over nothing at all.

He shakes his head disgustedly, but recovers with his usual line, “Oh, well, that was a long time ago. I can’t even remember what I had for breakfast.”

I nod, laugh, frown.

Laughter in the face of reality is one of the finest sounds there is. In fact, a good time to laugh is any time there is.”  Linda Ellerbee


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

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Morning walks clear the head.

For the past week a bad cold gripped my head, a cold I caught from my husband who still insists he didn’t have one. For once, I took my own advice and lay low, resting and drinking lots of tea, force-feeding Vitamin C in various forms. I was a real grump because I couldn’t go out and play in the first snow of the season. I even forfeited my daily walks, until this morning.

img_4730Mid-morning, I heard Peter tell Nobby it was time time for a walk. The dog has adopted his master’s ways, he is not a morning dog; he needs coaxing. “Will you wait for me to get dressed so I can go with you?” I yelled. I was still in snowflake pj’s and mommy robe.

Peter smiled. “Yes! Thank  you,” he said. As I dashed upstairs I heard him tell Nobby “she” is going with us so we don’t get lost. He sounded happy. I had to hurry or he’d forget and leave without me.

We walked for nearly an hour, not so far in distance, but slowed by the dog’s need to figure out who else had walked that way.

The fresh air — mild after last weekend’s snow and near zero temperatures — revived me. Ideas began to gel, solutions to problems began to surface. By the time we came in the door, I felt better than I had in more than a week.

While I poured coffee, Peter studied the dry erase board beside me. “Today is Sunday, isn’t it?” he asked.  I nodded, then noticed he was wiping “Saturday” and “14” off the board. I’d been so wrapped up in my thoughts earlier that I hadn’t updated the message first thing, something I always do.

“Yay, you know what day it is!” I said. He smiled proudly while I updated the day and date.

Leslie called a little later. Did we want to go to a matinee and then to eat after? Yes we did. I added that information and showed the message board to Peter. Slowly, he read the words out loud, then smiled. “Something to do on Sunday,” he said.

Smiles are hard to find some days, but they are always worth looking for.

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

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Forever — is composed of nows —

For my husband to give me a meaningful card for our anniversary was present enough. But coupled with heart-shaped earrings in a beautiful little box, WOW!  With Leslie’s help — she offered him three choices — he picked the earrings and the handcrafted box to put them in. He doesn’t remember our Boxing Day anniversary, nor how many years we’ve been married, but some glimmer helped him choose perfectly.

When I opened the Leslie-wrapped present, he hung over my shoulder to see what he’d given me and why. “Our anniversary? Did I forget?” I said he hadn’t, and that the box and earrings were what he’d given me.

“I did a good job, didn’t I?” he said. “Did you give me something?”

“I did. That card on the mantle…and shoes.”

“Shoes? You gave me shoes?”

I laughed. “Two pair yesterday,” I said.

“Why?”

“Why did I give you shoes, or why did I give you two pair?

“Yes.”

“”Well, shoes because you’ve been complaining you don’t have any, and one pair because it was Christmas and the other pair as an early anniversary present…”

“Anniversary? Did I miss it?”

“No, it’s today, it’s ‘now,'” I said. I held the box up to show him Emily Dickinson’s line.

He shook his head. “I don’t know what that means.”

Hm, Dickinson is sometimes hard to explain. “It means ‘now’ should be treasured and celebrated, our anniversary, for instance. ‘Now’ means the present…right now…’forever’ is made of all our ‘nows.'”

I don’t think my stumbling explanation made sense to him, but he was pleased that I was pleased with “the present” he chose.

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Birdseye maple box, Mike Mikutowski Wood-working. Lapis lazuli earrings above, Cathy Guss

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

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Trouble with a capital T rhymes with me!

My friend Bette made it a point to tell me she’d seen Peter at the grocery store recently. She figured I must be in the store somewhere, although she didn’t see me. Bette introduced herself to him because she knew he wouldn’t remember her name. His response was quick and so typical of him. “Don’t tell ‘anyone’ I’m here. I’ll be in trouble.”

Anyone meant me, of course.

She didn’t remember what day it was, but I figured it was probably the Tuesday he snuck out without telling me he was leaving, nor where he was going. When I realized he wasn’t here and that he had probably been gone well over an hour, I went looking. By the time I got home, he was back. “Where’ve you been?” he asked, greeting me at the door as if he’d been out looking for me.

“You didn’t tell you were going out,” I said. “I’ve been looking for you.”

“I didn’t know where I was going,” he said. “I just went for a walk.”

“Where?”

DSC01592He shook his head. “Can’t remember.…that was a long time ago.” He uses the “long time ago” line a lot in attempt to joke his way out of Trouble. His only Trouble would’ve been if he had gotten lost for real!

That evening I found a Hershey bar wrapper and deduced that he’d gone to Kroger’s.

Several days later someone else told me she’d seen Peter at Kroger’s and he seemed confused. She saw him leave and decided to call me — it was that same Tuesday. I didn’t see her voice mail until after he’d “found himself,” but it is comforting to know we have friends to help me keep track.

Screen Shot 2016-06-15 at 11.56.06 AMI am researching personal tracking devices. There are several types on the market, but he wouldn’t use any of them willingly, and I know he would find ways to “lose” them. He’s crafty that way.  I wish someone would come up with a microchip like veterinarians implant in dogs. The idea would make Peter laugh…I think that will be my little secret.

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Breadcrumbs?

 

The National Society of Newspaper Columnists contest winner, 2016 —
online, blog, & monthly under 100,000 unique visitors category.

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