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.

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

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

Be gentle with yourself, you’re doing the best you can.

Notices for books by, for and about caregivers show up in my email every day. I follow blogs by women  who are caregivers, and by experts who advise them…advise us. The common thread is, be kind to yourself and remember, you’re doing the best you can at a very hard job.

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Monday, Leslie collected Peter at ten for Christmas shopping and lunch. She volunteered for the job. She, and Carolynn too, always lift his spirits and make him laugh with their teasing. I’m sure he enjoyed the day, even though he didn’t remember where they’d been.

After they’d gone, I spent a long hour on the phone straightening out a niggling problem, the sort of thing I despise doing. After that, I thought, I should go to the grocery. But, no, dammit, I would get coffee at Our Daily Bread, a favorite haunt. I’m so glad I did. While I dawdled over coffee and cranberry/orange scone, I read two excellent story drafts by writer friends. Un-in-ter-rupt-ed. I felt a bit guilty that I enjoyed being there without Peter, but I confess, I savored it.

As I was about to leave, a young woman waved from across the room. Stephanie, a gardener friend, worked her way to my table and gave me a hug. “So nice to see you out like this,” she said. “I know how hard things must be, but obviously, you have ‘time off’ today.” She’d just been to Florida visiting her father who has Alzheimer’s too. “I understand what you’re going through,” she added.

Stephanie, with her million-dollar smile and twinkling eyes, helped make my day.

After that, I did get a few things at Kroger’s. While in the card aisle, looking for an anniversary card for my husband, a wheelchair-bound, sweet elderly lady asked me to help her find a Christmas card for a dear friend. I picked out several, but cost was an issue. She really liked an eight dollar one, but wanted something in the five dollar range. I found one with a message she loved. She thanked me over and over.

I hope I helped make her day.

Leslie stayed for a cup of tea after she brought Peter home even though I knew she had lots to do at her house.

She made my day all over again.

This morning, both daughters texted, Today is the shortest day of the year. Won’t be long until time to cut the grass, as my dad always said on the Winter Solstice.

Their reminders made me chuckle and made this day.

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

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Puzzling.

A lot of puzzling memory and behavior problems cluster under the dementia umbrella. So far, science knows too little about most of the variations and nothing that can cure any of them.

img_4436On a day-to-day living-with-it level, my husband’s memory issues are baffling to both of us. He’s always liked to do crosswords, and still brags about the time 50 years ago when he won the London Times Sunday crossword challenge. He does the daily crosswords still, but I’m not sure how well. He enjoys jigsaws too, and recently resurrected a 3D castle puzzle.

So I got out several Christmas puzzles we’ve worked many times over the years. Among them, a tiny one depicting a mouse dressed as Santa. I sorted the edge pieces from the rest. and laid out the one small section that was still stuck together. The whole thing is quite small. He got into it quickly. Ten minutes later I went back to see how he was doing. There were a lot more white background pieces than before.

img_4440“Where did these come from?” I asked. He shrugged his shoulders and muttered something about “needing more.” I picked up a piece that had green pine needles as part of the design. “Oh, these don’t go with this puzzle,” I said, “they go with this one.” I showed him the larger puzzle I’d set aside. It pictures wild birds on a feeder that hangs from a pine bough. It was partially put together in the box.

img_4437Peter doubled over laughing at himself. “Well, when I couldn’t find the pieces I needed, I thought they might be in that box,” he explained. He realized how silly that sounded.

“We’ll do that one separately,” I said. “Finish this little one first.”

“There aren’t enough pieces,” he said, grabbing for the bigger box again. He’d instantly forgotten we’d had that conversation, that he’d laughed at himself.

As often happens, I tried to make sense of how he can work on an intricate 3-D 620-piece jigsaw one minute and the next try to fit a 500-piece 12″ x 36″ puzzle into a 100-piece 7.5″ square frame.

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

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Nobby did it.

Finding everyday things in strange places has become a daily occurrence at our house. I’ve found a milk carton in the bread drawer, Peter’s green coffee mug in the fridge’s butter keeper. Salt and pepper shakers and Coleman’s mustard are often in there too — that little compartment can hold a lot. One morning there was a plastic baggie filled with potatoes beside his chair in the family room, and the electric kettle was sitting next to the burner of our gas stove. The latter, a disaster waiting to happen.

Lately Peter insists it’s my fault that he’s never known he should put liquid soap into the sink to wash things that don’t go in the dishwasher. Likewise, it’s my fault I never told him where to put the teaspoons after I finally found all of them wrapped neatly inside a place mat. And after I’d searched all over the kitchen for the box of tea I knew I’d bought a few days before, Peter was as surprised as I was when he pulled the box out of the little table beside his chair.

“Ah ha!” I said.

“How did this get in here?” he asked.

I rolled my eyes and raised my left eyebrow, but I was smiling. “Nobby did it,” I said.

This morning around 11:30, I reminded Peter he still hadn’t taken the dog for his early walk. “I know, we’re going now,” he said. He fumbled with Nobby’s harness — he can hardly manage it anymore, but gets angry if I try to help — and started out the door wearing only a light sweater over his shirt.

“You’ll need your jacket and a hat,” I said

“But it looks like summer outside,” he said. “Looks like the sun is going to come up.”

“Peter, it’s nearly noon, the leaves are all gone, and it’s gray and cloudy and cold.”

“Oh-h, well…yes-s…,” he said as he went to get his jacket.

I sat down to write this post. Minutes later, my husband, zipped into his jacket, came up behind me. He held the dog’s leash and collar in his hand, but Nobby wasn’t attached. “Do you think Nobby wants to go for a walk? Is it too cold for him?”

“No, he’s got his fur coat on,” I said. “Go, go.” 

“OK, we’ll  back soon,” he said.

“Thanks for the warning,” I said, using one of his well-worn sayings. He laughed.

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

 

 

Do I know where I am?

Peter was unusually silent. “Something wrong?” I asked. I was driving along a narrow road so could only glance at him.

The silence lengthened. “Do I know where I am?” he said at last.

Whoa, what?  “Do you mean this instant, here, on this road?”

“Yes.”

“Well, we just left Carolynn and Bill…we’re heading home…we’ll soon be in Waterville…” I paused to see if my words rang his bell. “Remember last week, on the way here, we had to stop for a parade in Waterville?”

Nothing.

I thought back to that Saturday. The long drive north had been uneventful until we got to Waterville (pop. 1,548), where we were blocked by a parade longer than the main thoroughfare. Stuck, twenty minutes away from Carolynn’s front door. I fumed, but Peter said, “It’s a pretty day. We’ve got time.”

“But I want to be there, not sitting here.” 

Forty minutes later we were zooming along the downhill drive to — whoops — Road Closed and Detour signs. “OK, I know how to get there from here, I used to bike along this road.” Several miles later I turned left onto another favorite bicycling road. “Do you remember? We used to ride along here a lot.”

Peter sighed. “You seem to know your way around.”

“We lived here seventeen years!”

“You did. I didn’t.”

A right at the next stop sign, then a quick left and we were on their street. “You sure know your way around,” Peter said again.

“We lived here seventeen years!

“I didn’t,” he insisted.

When I turned into their drive, he sat up straight and smiled. “I didn’t know we were coming here!” His eyes sparkled and when Carolynn and their two Westies ran toward us he chuckled. He knew where he was.

I laughed. “I’ve told you for weeks we were coming to see them…”

“I. Didn’t. Know.”

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Bill and Peter in front of a rock-hugging tree.

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Big Guy and/or It.

Throughout our visit, his usual confusion at being away from home eased a bit. After a couple of nights he was able to get from our bedroom to the bathroom and back without going into their room or Carolynn’s office. He didn’t even try to remember Duffy’s or Lily’s names, calling them instead “Big Guy” and/or “It.” He didn’t understand how to use the Wii remote to play golf or bowl with Bill, but he had fun trying. He could still keep track of the dominos played and plan moves accordingly. Bill took him fishing, golfing, and shopping; Carolynn and I took him to the farm stand; I took him to the Polish butcher and past our old house. He remembered the butcher, but had no memory of living in that house. It does look quite different — terrible — minus the two enormous maple trees in front.

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Bill, Lily and Duffy follow Peter around Moss Lake as if he knows the way.

But now, headed south again, Peter had asked if he knew where he was. I reminded him of all the things we’d done, his outings with Bill, our hike in the Adirondacks with the dogs. He shook his head. “Sorry, I just don’t remember.”

But I do. I remember a visit special for the girl-time with Carolynn and her friend Robin, a visit with friend Lisa, time off from caregiving thanks to Bill taking charge, and the laughs. Always the laughs.

I won’t forget.


The National Society of Newspaper Columnists contest winner, 2016 —

online, blog, & monthly under 100,000 unique visitors category.

Bragging, right?

At the urging of my friend Kathie, I submitted three posts from this blog to the National Society of Newspaper Columnists Contest, Online Blog, Multimedia Under 100,000 Unique Visitors Category. Whoo, a categorical mouthful!

UnknownIn a May 6 email from Cathy Turney, NSNC Column Contest Chair, she informed me that I was one of three finalists in that category.

My happy dance shook the rafters. There might even be a hairline crack in the foundation. I so wanted to tell Peter about it, babble on and on the way I used to do when some small triumph came my way.

But I can’t, not anymore. I’ve told him about this blog, as well as my other one, “Wherever you go, there you are.” He isn’t the least bit curious. I’ve tried to encourage him to read some posts, but he simply will not. Maybe he cannot. I’m not at all sure he can read very well anymore. He can’t concentrate long enough to remember the plot, and he often  asks me the meaning of words. Typical of Peter, he jokes about it, deliberately mispronouncing a word he doesn’t recognize.

There are days when I think he’d enjoy some of my shorter posts because the blog centers on him. He likes to know he’s noticed, a star in his own galaxy. Yet there are other days, too many lately, when knowing that I write about him would infuriate him. He’d retreat to what I’ve always called his “Mt. Rushmore mode.” Stoney. Silent.

So, except for an email in all caps to Carolynn, Leslie and a few others, I’ve been mum. Until now. Maybe I’ve earned bragging rights.

I wish I could share my excitement with my husband and that he could understand my thrill.

I with I had no reason to write this blog. Dementia really isn’t funny.

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“Dementia isn’t funny” NSNC contest entries:
“Magic pills? Wonder drugs? Snake oil?”
“Chips, a food group unto itself”
“It’s the little things.”

‘In November, people are good to each other…’

I’ve always liked November’s skill at blowing the warm months away with icy jabs, but I didn’t know it was special for anyScreen Shot 2015-11-06 at 4.21.38 PM reason other than Veteran’s Day, our granddaughter’s birthday and Thanksgiving. A surprise delivery of flowers from “The Soul Sisters” a couple days ago changed that. The card was inscribed “Happy National Caregivers’ Month, for the woman who defines caring.”

Me?

I assumed sisters meant Carolynn and Leslie, so right away, I took a selfie and sent them a thank you. Les replied she wished she could take credit, but she could not. Later, Carolynn wrote, “They’re from Robin and me, Mom, we’re soul sisters. Leslie and I are are blood sisters.”  She said she’d never heard of National Family Caregivers Month either, but Robin had.

Leave it to Robin. Carolynn’s best friend is probably the caring-est person I’ve ever known. She’s a go-getter caregiver, a whirlwind, a hurricane.

Peter answered the door when the flowers were delivered. I figured someone was selling something so I was shocked to see a pleasant young man holding a bright arrangement of autumn flowers. “Are you Judith?” he asked.

“Yes-s…”

“These are for you. Have a wonderful caregiver’s month.” I managed to thank him before he bounded off.

Peter’s chin was glued to my shoulder when I opened the card. “Who are they from?” he asked. When I said “Carolynn and Leslie” he wondered why they’d sent flowers? “Is it Clarke with an ‘e’?” he asked. “Maybe there’s another Judith Clarke on this street. Are you sure they’re for you?” he pestered.

I didn’t want to get into an explanation about caregivers, which he wouldn’t understand anyway, so I said, “Even if they’re not for me, I’m gonna’ keep ’em.”

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I kept them.

 

Title: line from In November, a book by childrens’ author Cynthia Rylant.
Leaf graphic: Alzheimer’s Prevention Registry

 

Attention span of a goldfish.

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Ten symptoms of caregiver stress were listed in an Alzheimer’s Association newsletter with this caveat: Alzheimer’s caregivers frequently experience high levels of stress. It can be overwhelming to take care of a loved one with Alzheimer’s or other dementia, but too much stress can be harmful to both of you.

 No kidding!

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In any given day I deal with several of these, and I’m sure other caregivers do the same:

  1. Denial – Early on, I was convinced that if I kept trying to force Peter to remember things, to eat right, to get out more he’d at least maintain his status quo.
  2. Anger – Screams, like geysers ready to erupt, lurk just below the surface of my “looking for laughs” demeanor. 
  3. Social withdrawal – Sometimes it takes too much effort do anything at all, much less be sociable.
  4. Anxiety – I’ve finally done what I should have done sooner: hired more help for Peter and for me. What a difference to have the house cleaned and tidied by a young lady who is energy personified, the garden maintained by a woman who knows first-hand what it’s like to be a caregiver, niggling tasks done by a handyman friend.
  5. Depression – Big mistake to think that I didn’t need anti-depressants. Hindsight and a meltdown proved me wrong.
  6. Exhaustion – I used to keep my house to a certain standard, not the same white-glove-test standard my mother used, but I kept the dust bunnies at bay, food in the fridge, cookie tin filled, laundry done. When I realized it had been weeks since I’d cleaned the bathroom or changed our sheets, I knew I needed more help. (see #4)
  7. Sleeplessness – Guilt wakes me in the wee hours, especially when I’ve crabbed at him for things he can’t help. Peter’s attention span is worse than a goldfish’s and he’ll ask the silliest things over and over. Within a few seconds he forgets I yelled and when I apologize he doesn’t know why.
  8. Irritability – No one has ever called me patient. Lately Peter has started reorganizing the pantry every few days, lining up jars and moving boxes so I can’t find anything. Most wives would be thrilled if their husbands undertook that task, but I’m an angry bumble bee.
  9. Lack of concentration  – I used to be so organized, so tidy, but no more. My personal spaces are in the same sorry state as my mind.
  10. Health problems – Many times I wonder if his dementia has rubbed off on me. Am I losing control too? Is it stress, or am I destined to be a statistic as well?
    I talked to my doctor. He did the basic tests and I passed. “Stress,” he said, “it’s stress. You’re doing fine, but take time for yourself, do what you can to alleviate stress.”

My mother always said, no matter how bad things may seem, there’s always someone who is worse off than you. I’m glad I’m not a goldfish.

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A life sentence.

Periodically, our long term insurance company arranges for a nurse to come assess my husband — they want to  make sure he still has dementia, I guess. Today was the day. We were lucky to have Caroline again. Peter clicked with her before and again today.

The questions she asks are almost exactly the same as those his neurologist asks, and we were at her office yesterday. They want to know if he has any physical limitations, dizzy spells, or loss of strength, and if he can do household chores or handle bill-paying.

No, no, no, no, and no.

The hardest questions for most dementia patients are: can you name the day of the week, the month, the year, the season?

No, no, no, and no.

“Now I’ll ask you to remember three words,” Caroline said. Peter groaned and she smiled, but went on. “You’ll get one point for repeating the words correctly right away, and then again after you’ve either counted backwards from one hundred by sevens, or spelled the word “world” backwards. OK?” Peter nodded. “Your words are table, book, tree.”

“Table. Book. Tree,” he said. One point.

“Now, would you rather count backwards by sevens or spell “world” backwards?” she asked.

No hestitation. “D-L-R-O-W.”

“Great!” Caroline said. “Now, the very last part.” She handed him her clipboard and asked him to copy the multi-sided figures shown. After that she asked him to write a simple sentence.

“Sentence about what?” Peter asked.

“Anything at all,” she said. “A short sentence, but it has to make sense.”

Peter quickly copied the three figures, and after thinking a few seconds he wrote a sentence.

She looked at the clipboard. “Oh-h, that’s so sweet,” she said. She showed me his sentence: “I still LOVE my wife.”

Even though he didn’t score as well as he did the last time she was here, my unsentimental, undemonstrative husband got an A+ from me.

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This is the way he makes our bed.

Peter helps around the house…creatively. He can no long fix or build things like he used to, so he’s invented chores and ways to do them.

He scuffs at embryonic maple leaves and tiny pear blossom petals — they hitch rides inside attached to Nobby — off the family room rug with the edge of his shoe, then picks them up and carries them to the wastebasket. Using the hand vac would be quicker and do a better job, but he likes his shoe method.

After I’ve done my weekly run-through downstairs with the vacuum cleaner, Peter straightens the fringe on the rugs, sometimes with the dog’s wire brush, sometimes with a comb, once with my pastry fork!  I don’t care whether the fringe is untangled or not, but the pastry fork is off limits!

My husband has an ongoing obsession with picking up the tiny twigs that snap off the trees. He mounds them into piles in the woods or crams them into an empty birdseed bucket that I dump when he’s not looking. He polishes the kitchen countertops until they gleam, but he doesn’t move appliances out of the way to do it.  There’s no doubt where the coffeemaker, knife block, tea kettle, and mixer live because the unbuffed areas tell the story.

I’m usually up and out at least an hour before Peter is, but when I come back from my walk he’ll have “made the bed.” That is, his side of the bed is smoothed, pillows plumped, spread straightened. My side remains as it was when I crept out — strangled pillows, tossed quilt, crumpled sheets.

When I hang laundry out back, I often ask him to bring it in. He brings his jeans, his shirts, his socks. His excuse for not bringing my clothes, our sheets or our dishtowels is, “I didn’t know you wanted them!”

That excuse, and the novel bed-making, has ASD (Austism Spectrum Disorder, fka Asperger Syndrome) written all over it. It’s nothing to do with dementia.

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Peter charms this lass.

I’ve often said, my husband’s dementia is much easier for me to deal with than ASD. Neither can be “cured,” but ASD sometimes manifests as what I call “The Mt. Rushmore Effect” —stone-faced, remote, cold. And yet, the man I fell in love with all those years ago can be funnier, sweeter, and more charming than anyone I’ve ever met.

I’m sure Peter thinks his ASD is a non-issue since he’s lived with it successfully all his life; dementia, though, has foiled him and he does not go gently.

An excellent “Masterpiece Theater” series*, “Doc Martin”, makes both of us laugh no matter how many times we watch it. The Doc (Martin Clunes) is a highly intelligent surgeon who has a blood phobia and serious relationship issues with his patients, and with Louisa (Caroline Katz), the woman he tries to marry. Although sometimes cringe-inducing, the series is doubly funny to me, first, for its pure comedy, and second, because Doc Martin is my husband all over again. Peter doesn’t see himself, while I relate to Louisa’s devotion to and frustration with the man she adores.

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* “Doc Martin” is also available on Netflix.