Right now is the right time.

My Peter, now more than ten years along dementia’s downward slope, is slipping faster. I try to ease the skid by finding activities to occupy him, to give him a sense of accomplishment. Many things he once did easily aren’t possible now. It has been a long time since he could cook anything, not even fried eggs or bubble and squeak. Sometimes he even forgets how to make a cup of tea.

I waited too long for the right time to introduce these “sort or organize” ideas I found online. But on his own, perhaps prompted by some brain tweak that Alzheimer’s patients experience, he’s been doing many of them for months, maybe years. I offer them here, for readers looking for in-home occupational therapy.


Sort or organize…

  • …nails, screws, and other hardware. Peter has long since sorted, by size and age, his collection of antique hammers and other old tools.
  • …nail polish and lipsticks, sorting by color, brand or on a scale of 1-10 by preference. Not bloody likely, he’d say to this one, but I might push him to tackle it.
  • …buttons, using muffin tins to sort by color, size or style. Not even the antique buttons my mother collected piqued his interest.
  • …coins, according to date, value or place of origin. Ah yes, he stacks coins, wraps others, and bands paper currency he brought home from our travels and his business trips to Europe and Japan.
  • …the pantry, arranging cans and jars by size, brand or contents. Unfortunately for me, he does this often. I want my pantry to be organized the way want it organized — tomato products together, vinegars and oils, all condiments, and so on. He likes everything lined up like soldiers, no matter their culinary purpose. (I’ve declared the pantry off limits, for all the good that does.)
  • …the silverware drawer, rearranging the order of the forks, spoons, and knives. Peter often reorganizes our two sets of everyday cutlery. He likes the two sets separate from each other, and I don’t give a hoot about that. I prefer all dinner forks in one compartment, all salad forks in another, likewise all soup spoons, all dessert spoons, and so on.
  • …playing cards into decks that match, or into suits within a deck, or by numbers. He’s been doing this for months, endlessly. He hates that my canasta decks are the same on the backs and tosses them aside because they don’t suit his orderly sensibilities.
  • M&Ms, using muffin tins to sort by color. Choose one color to eat. Haven’t tried this yet, but I have a feeling he’d eat all of them before they made it from bag to tin, all except the green ones, that is. “Green candy isn’t good,” he’d say.

Just a few years ago, Peter would’ve laughed at the thought of doing such silly activities. Now, they calm him, and give him a sense of purpose, in his increasingly purposeless world.

Header photo: Stacked coins in his closet.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

‘This high’ with no caffeine.

This morning, Peter and I had our annual back-to-back wellness check-ups, fasting check-ups, no caffeine, nothing to eat. Our stomachs growled menacingly.

For the first time in his life my husband has a “spare tire.” He weighed in at 145.5 pounds, up from a low of 128 a few years ago. (I’d have my other knee replaced if I were guaranteed another miraculous thirty-pound loss like the one, post surgery, in 2013.)

When the nurse asked my height, I answered 5′8″, but I think I’ve shrunk to less than that. When she asked Peter, he put his hand on top of his head and said, “This high.” She laughed and so did I. Then she listed three words for him to remember — “apple, penny, watch” — but he forgot all of them. I only remembered two!

When Doctor T bustled in, he asked Peter, first thing, if he was still walking his dog. “Oh yes, he walks me, twice a day,” he said, as he always does. I explained that they still visit nursing homes once a week. “Good, that’s good,” the doctor said. “Those old fellows must love you.”

“The old ladies love Peter and Nobby,” I said. “They both get their share of hugs and pats.”

“See, if you’d known that years ago, Mr. Clarke, you’d have had women swooning at your feet.” Peter has always had women swooning at his feet.

After our labs were finished, Peter asked where we were going next. “Home,” I said, although I was already plotting where to go for coffee and pastries. He started nudging me to the left like a Border Collie herding sheep. “What are you doing?” I asked, pushing towards my car on the right.

He laughed. “Silly me! I looked at that one and thought it was yours.” He pointed to the sleek black car next to my boxy blue one. Its license plate read C-L-A-R-K, while my plate describes my stern personality.

Later, Peter sipped his coffee and stared at the scrawl on the door across the alley. “I’m trying to figure out what that says.”

“Good luck.”

“Good luck?”

“No, I mean ‘good luck’ figuring out what it says!”

If the doctor had written a prescription for laughs prn, it would’ve already been filled by eleven this morning.

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

Salt and pepper to taste.

“What do I eat here?” Peter asked over and over. I told him his usual Cuban pork wasn’t on the menu any longer, but he could have fish and chips. He was happy.

When our meals were served, Peter doused his three separate times with enough salt and pepper to fill all the shakers in our house. He has always used way too much of each, but lately, his habit seems even more excessive. Dementia, I’ve learned, can destroy the sense of taste, hence so much salt and pepper. In addition to over-salting, Peter has developed a sweet tooth that could make him a poster boy for the American Dentists’ Association dire warnings about sugar.

After watching salt avalanche off his mountain of fish, I pointed to the malt vinegar. “What is that?” Peter asked. I told him. “What’s it for?” he wanted to know. I raised my left eyebrow. “This is what you’ve always used, not all that salt and pepper,” I said. Malt vinegar on fish and chips is what one does, he told me early on when he introduced me to the English staple!

A sudden seismic change in my husband’s behavior has made the past few weeks troubling. I called it his “new normal” in a recent post. Not recognizing malt vinegar, nor knowing what it was for, was further sign of the change I’d noticed.

When the waiter asked if we were ready for the bill, I surprised both him and Peter. “No. I’d like coconut cake, please, and coffee. Two coffees.”

“Well, I’m having dessert then,” Peter said. The dessert menu was all photographs so it didn’t take him long to zero in on a chocolate cream puff.

Our coffees came first, each with tiny cups of half-and-half. “What are these?” Peter asked.

“Coffee creamer…you stopped using it years ago.”

He pulled a lid off. “Can I drink it?”

“No-o, you’re not five-years-old.”

He grinned and pretended he was going to drink it, then started to pour it into his beer. “Aren’t you going to finish your beer?” I squealed. I could not believe he’d leave a couple swallows of beer, much less pour cream into it. In the end, he put it in his coffee rather than waste it.

When his cream puff came we laughed. It was cantaloupe sized. Even he couldn’t eat it all. I ate every last bite of my coconut cake.

This hint for my husband to fill the S&P shakers didn’t work.

Header photo: Shakers waiting for me to fill them.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

Down the down staircase.

The downward path that any of the dementias take follows various routes, with stops and starts along the way. There are plateaus when it seems the diagnosis is a bad dream, when everything seems all right again. Normal.

Until the next minute or hour or day when the nightmare resumes.

Even though I often say — and truly believe — that my husband isn’t as bad off as most, that my caregiving tasks are easy compared to some, truth is, it’s a roller coaster ride that is not for sissies.

We’d been coasting along with mild ups and downs, a kiddie roller coaster, until one day three weeks ago. Peter and Nobby returned from a weekly nursing home outing with ever-faithful Bill. My husband came back so distressed and overwrought that it was as if had morphed into another person entirely. His mild-mannered self was gone, and in its place was a man I didn’t recognize. His face was different, his eyes were wild, his whole demeanor changed.

“That’s it. We’ll never go back there. Can’t go anymore,” he yelled as he paced. “They won’t let Nobby in any more.”

My worst fear came to mind. “Did Nobby knock someone down?” I asked. He’s a big dog, but as affable and lovable as a puppy. I envisioned him jumping on a frail old lady causing her to fall and break her hip.

“No, no, but they won’t want us anymore!” I continued questioning, but he couldn’t explain.

I contacted Bill to ask what had happened. He said Peter seemed “off,” very quiet, and he hadn’t wanted to go to their usual lunch. Nobby had been his usual friendly self,  no one was harmed, the visit had gone as well as it always does. Bill chuckled when I told him Peter thought he had gone to visit his mother. (Bill’s mother passed away twenty-some years ago.)

That day was a turning a point, a sharp turn in the steep, down staircase. I had hoped he’d magically snap back to the way he was, to the holding pattern he’d been in, but he hasn’t. This, then, is his new normal.

 

Nobby always watches Peter.

Header photo: Who is walking whom?

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

The tip of the iceberg didn’t sink the Titanic.

Who would ever think that something as inconsequential as a manicure would be the tip of an iceberg? Somedays I look at my hands — never my best feature — in despair. Nails chipped and split, cuticles like the pithy strips inside an orange.

Lately, I haven’t had time to indulge myself, because during the hours I have help for Peter I have to squeeze in shopping, errands, or all-important time to get together with friends. Yet, I make time to attend to his fingernails. He can’t, or won’t, do it anymore. His nails are strong enough to, well, pull nails, and they’re very difficult to trim. I have him soak his hands in warm soapy water to make it easier on both of us, but he complains and wiggles, although I think he secretly likes it.

And I drag him to get his hair cut and beard trimmed. I’ve tried to do both, but failed. I schedule our appointments back-to-back for my convenience. It’s one less trip, but it does take away from that bit of time for myself. Such a small thing, an iceberg’s tip, but underneath…!

images-1As dementia — Alzheimer’s — continues its march, I know more and bigger icebergs lurk. I already have a list of potential problems that lie ahead. The only thing this caregiver can do is lookout for laughs — lifesavers — and go full speed ahead.

 

Header: A “berger bit” iceberg in Alaska, September 2006.

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.

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

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

 

‘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

Header photo: Foggy weekend at the river.

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.

Header photo: Nobby walks Peter every day.

img_4742

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Dementia: tragedy, comedy and love story.

“You know I’m not about rainbows and unicorns,” Elaine Eshbaugh, PhD writes in her first blog post of this new year. I’ve been following her “Welcome to Dementialand: Living, Loving, and Laughing through Alzheimer’s and Related Dementias” for some months. She has a “tell it like it is” style that resonates with me.

“If you are one of my regular blog readers,,” she says, “you likely have dementia or love someone with dementia. I am not going to feed you some bullcrap about becoming a better version of yourself or making 2017 the best year ever. For those of you in the trenches of Alzheimer’s or a related dementia, it may seem laughable for me to wish you a smooth path, so I won’t. My wish…is that you have the strength to endure the journey and…know when to ask for help. My hope is that you have a sense of humor to carry you through and a keen enough eye to spot [even subtle joy….”

Wise, but blunt, honest. I like that.

“I wish you hope even if hope has changed,” she says, citing couples who have planned post-retirement adventures that will never happen. Before dementia engulfed us, Peter and I were lucky enough to complete all but one trip on each of our bucket lists. Antarctica was mine, and the Terra Cotta soldiers in China was his. That worked out just fine because he insists he did go to see them, even though it was on t.v.

“Dementia is a tragedy, a comedy and a love story all at once,” Eshbaugh writes in her 12/26/16 post, “Lessons  learned…” She is amazed that families whose lives are impacted by dementia can still find humor in their situations, yet apologize for laughing.  “…They need to stop apologizing for that. No, dementia isn’t funny, but the more moments of humor you can discover on this journey, the better off you will be.”

img_3354

Tricky Nobby.

The other morning I laughed at a new trick Nobby, Peter’s dog, managed. Lately, we’ve started blaming him — “Nobby did it” — for the strange things that happen around here. For instance, Nobby often takes his Invisible Fence collar off and hides it; he went to Kroger’s and paid for a Hershey bar with his VISA card; he puts food needing refrigeration in a cupboard and leaves things that should be in the freezer on the basement floor. The most recent trick is the most amazing yet. Somehow he managed to unplug a lamp, take its shade off, remove the bulb and hide it!

Yesterday was his ninth birthday, old in “dog years. ” I chuckled at the twist on the old saying You can’t teach an old dog new tricks. I’m here to tell you, an old dog can teach himself new tricks!

dfa5e88a41c39e79efa876e6991da1b6

Thanks to Elaine Eshbaugh, PhD, Associate Professor of Gerontology and Family Studies, University of North Iowa for permission to quote.
Header photo: Lisa Frank, 2013 Facebook.

Cure for common cold!

On New Year’s Eve, with no bubbly in sight, my husband started hiccuping, or hiccoughing as he would spell it. Uh oh, I thought, he’s getting a cold.

I dosed him with vitamin C in the form of Clementines, cups of sweet, hot tea, and homemade elderberry cough syrup. He grimaced and muttered at all my attempts, so I gave up and went to bed. Later, I was awakened from a sound sleep by a cacaphonus hiccup accompanied by an echoing, hacking cough. “Arrrrgh-h-h-h!” I groaned.

“Sorry,” he whispered. He always attempts to be very quiet so as not to wake me. He twisted and yanked at the covers and  finally settled onto his side. “HUH-HUHH-CK,” he said. “Sorry.”

He was asleep instantly, but the staccato sounds continued. I pulled my pillow over my head. “Try holding your breath.”

“Why?”

“To stop your hiccups,” I said, though from experience I knew it would not.

He didn’t even try. The bursts continued until I suggested that he might sleep better if he went into the other bedroom.

“Why would I sleep better there?”

“Because I won’t poke you all night!”

He clomped down the hall and I drifted to sleep. I knew I hadn’t handled that well, but, I rationalized, no one dies from hiccups.

Later still, Peter got up to use the bathroom, but forgot he was sleeping in the guest room. He returned to our bed, grabbed for the covers but instead got my arm which I’d flung across to his side. Both of us yelped. “What are you doing?” I said.

“Coming back to bed…I thought you were sleeping in the other room…”

“No, you were!” He plodded back down the hall.

Sunday morning, froggy-voiced, weepy-eyed, drippy-nosed, and still hiccuping, he croaked, “Good morning.” His voice was in the basement.

“How do you feel?” I asked. He patted himself all over and grinned. I rolled my eyes. That’s always his answer to my how-do-you-feel question.

His symptoms continue to this moment. He’s in the next room watching television, hacking and sniffling and still hiccuping endlessly. When I asked how his cold was this morning, he shook his head and said indignantly, “Cold? I don’t have a cold. Sneezing a bit, that’s all.” He coughed hard enough to untie his shoes and knock his socks off.

images-1

And that, Readers, is how I discovered the cure for the common cold, at least at our house. Dementia, dementia,  that’s the cure. Peter insists he is not sick, does not have a cold or a cough or a hiccough. Since he doesn’t have a cold, there’s nothing for me to catch.

Knocks the achoo right out of the Kleenex™ factory, doesn’t it?