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.

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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?

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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There’s always something worse.

Peter asked his usual question, “What do I order here?” I gave my usual answer, “Beef.” We were at Lefty’s, a favorite restaurant, and we were hungry. I wasted no time ordering steak au poivre for him, Asian chicken salad for me.

He gazed out the big windows. “Looks like afternoon,” he said. “The sky is so blue.” Cloudless skies delight him.

“Technically, it is afternoon,” I said. “It’s not even five-thirty.”

“I never know what time it is anymore.” He looked at his watch. “Looks like daytime,” he said.

“It is daytime,” I said.

He followed the script engraved on his brain. “Any news from ‘upstate,’ or have I already asked?”

“Well, yes, you have, and, no, no news.”

“Any good movies on?” He realized that was another routine question and he smiled when I shook my head.

He looked at me, eyes questioning, mouth downturned. “What’s wrong?” I asked.

“Oh, just thinking how I am now and how I used to be. I can’t even talk anymore.”

“You never talked,” I reminded him, “and besides, you’re doing OK, a lot better than some. There are worse things.”

“Worse for you maybe,” he said, with a teasing smile, “but not for me.” For some reason, that made us laugh and his downcast moment was erased. Forgotten.

When our meal arrived, he reached for the salt and pepper. As always, he salted and peppered liberally without first tasting his food. One of my pet peeves.

“You are peppering your steak au poivre,” I said.

He shrugged. “So?”

“It is pepper steak,” I said.

He laughed, I sneezed, we laughed together.

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His sneezes, like his questions, are repetitive.

Hiccups every few minutes for several days predict a bad head cold for my husband. Sure enough, a weekend of hiccups were followed on Monday by a cacophonous, multi-sneeze cold. I started force-feeding orange juice, more cups of tea than are usual for him, and a potion a friend recommended.

Every time I approached, spoon in hand, Peter said, “What’s that for?”

“Your cold,” I answered again and again.

“Do I have a cold?” he croaked between sneezes.

“Yes,” I said, over and over. “Mmm-m.”

Tuesday, when I asked if he felt well enough to go on the usual Nobby-the-therapy-dog visit to the adult day care facility, he asked if he’d been sick. Then he sneezed and sneezed and sneezed. I cancelled.

Same again this morning. A nursing home visit was scheduled for Nobby. “How do you feel?” I asked. Peter patted himself all over and said, as he always does, “I feel fine.” He sounded worse than Louis Armstrong on a good day. I cancelled the visit.

imagesimages-2There are so many horrible diseases humans contend with, but often it’s the common cold that makes us the grumpiest. Dementia is a bit like Kleenex – it wipes away the last sniffle, the dripping nose, the streaming eyes. The cold is still contagious, but dementia in all its guises, is not — and that’s a good thing.

My husband isn’t grumpy when he has a cold, he’s sneezy. But when I catch his colds, lookout, I’m grumpy.

 

Sneezy and Grumpy sketches: “Snow White and the Seven Dwarfs,” ©Walt Disney Studios, 1937

‘I’m still here, but yet I’m gone…’*

At Leslie’s birthday celebration, one conversation centered on movies that induce tears. Granddaughter Samantha, a real ham when she wants to be, told us about a “romantic comedy” she’d seen that had a horrific ending.  She was indignant. She sobbed. When Leslie’s friend Kenna added her observations and her tears to the story, the rest of us howled.  I seldom cry, and “Lassie come home” and “The Fighting Sullivans” are the only movies that moved me to tears, ever.

Screen Shot 2015-10-23 at 3.02.42 PM“I’ll be me” is the 2014 film about country singer Glen Campbell and his Alzheimer’s-inspired farewell tour. It has been in theaters, but I found it on Netflix.

I watched it secretly. I didn’t want Peter to watch me watching it, even though I don’t think he would recognize himself in Campbell. I’ve slowly come around to admitting to myself that my husband has Alzheimer’s, though I say “dementia” to him if he questions why he can’t remember things. Dementia is an umbrella, Alzheimer’s, a hurricane that turns the umbrella inside out.

When Campbell was diagnosed in 2011, he chose, with wife Kim’s encouragement, to have his farewell tour filmed. He wanted people to know he had the disease, but could still sing and play guitar. “Hell, I’m not done yet,” he said.

A camera was there to follow him as his brain was scanned using the newest and most definitive diagnostic techniques. The camera was in the doctor’s office when he and Kim heard the dreaded words: “Highly probable that you have Alzheimer’s Disease.” Cameras followed him on his final tour that was to be three to five weeks, but turned into 151 performances worldwide. As long as the singer could keep going without too many hiccups his wife, children, and musicians thought he should continue doing what he loved.

My husband can’t sing, though he thinks he can, and he doesn’t have an entourage to bolster him. But his sense of humor — wacky, corny — is like Campbell’s.  Peter is handling his downward spiral the way Campbell does: hiding behind stoicism, silliness, and wild excuses. Bluffing, in other words.

Campbell is 78, a year older than Peter. The singer can no longer put words together intelligibly — aphasia — though he still plays his guitar. Peter has a hard time finding words and seldom says much, especially in a group. He’s never been a talker, so his lack of conversation is nothing new to those of us who know him.

The film was a Bandaid to my soul. Seeing that Campbell continues to clown around the way he always has, using goofiness to camouflage his fading memory, was like watching my husband. Peter’s clowning not only saves us — it’s impossible not to laugh — but it lets him think he’s fooling me and anyone else who’s around. Occasionally, a look crosses his face that says, I know I’m being silly, but it’s all I have left.

Some of Kim Campbell’s asides resonate. In two scenes, there are shots of the singer holding up plates and licking them clean. In a cutaway, she says, “I get so mad at him when he does that…I tell him it’s bad manners…I go into the pantry with my plate and sit on a stool to eat.” Later, she says tearfully, “I know he can’t help it, but I don’t like to see him that way.” Her words helped me feel better about my own reactions to  my daily triggers.

The singer now calls his wife of 32 years Mrs. Campbell. Her laugh is sad.

“I guess my message to caregivers is, stop to look on the bright side …. Make the best of a bad situation.…” When asked about the message, she said, “This film is funny…uplifting. Yes, it deals with Alzheimer’s, but it’s not a downer…not depressing. You learn a lot and it’s very educational. … We want people to know that it’s just full of laughter. Because people might go ‘Oh, it’s about Alzheimer’s. I don’t want to go see this film.'”

“I’ll be me” is funny, yes, but I confess, it’s now on my list of movies that make me cry. It is a must-see.

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*First line of “I’m not gonna miss you,” the last song Glen Campbell recorded.
Songwriters: Julian Raymond and Glen Campbell.
Lyrics © Warner/Chappell Music, Inc., BMG Rights Management US, LLC
“I’ll be me” directed by James Keach; produced by Trevor Albert and James Keach

 

 

 

 

 

Laughter, always the best medicine.

This caregiving business is a series of lessons on the run. I have an “ah ha” moment almost every day.

Take today.

Every morning, I put our prescription meds into two shot glasses — Peter’s on the left of the coffeemaker, mine on the right. He takes an 81 mg aspirin, Losarten for blood pressure, Wellbutrin for mood, Livolo for cholesterol, and Vitamin D3 because dementia patients are thought to be lacking in the D vitamin. Oh, and Namenda, the well advertised medicScreen Shot 2015-08-09 at 5.49.32 PMation thought to slow the effects of dementia-related diseases. How could I forget that one?

After dinner, I dole out Glucophage, the supposed answer to leveling his blood sugar levels since he won’t leave sweets and carbs alone no matter how often the doctor explains nor how often I nag. Just before bed, he takes Donepezil (Aricept), to treat confusion, possibly improve memory, awareness and the ability to function.

How well do these meds, particularly Nameda and Donepezil, perform? I have no idea. I do know that his taking pills from the wrong shot glass was an important lesson-in-waiting for me this morning.

I discovered the mistake when I poured my second cup of coffee. Peter was already watching West Ham beat Arsenal. “You haven’t taken your pills yet, Peter. No, wait! Mine are gone and I never take them until after my coffee!”

He had no idea what I was talking about. So much for awareness.

“Did you take my pills?” I asked, showing him the little empty glass. “Yes, you took mine.” I answered my own question.

“I don’t know…probably,” he said. “What will happen to me?”

“Hm, well, my super prescription vitamin may give you a boost. Maybe you’ll have the energy to mow the grass…” I laughed at my own joke as he made a face that said, “Not bloody likely…I’m watching soccer.”

I didn’t expect that he’d cut the grass, and he didn’t. But, lesson learned, from now on I’ll keep my medications in a secure container in my pocket.

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Ah ha! A beer-on-a-stick might work.

 

Don’t dwell on the disease…

No disease should be allowed to have as its victims both the patient and the caregiver. But that is exactly what is happening every minute of every day.”

—Meryl Comer, Slow Dancing with a Stranger:
Lost and Found in the age of Alzheimer’s
(2014)

[Author Meryl Comer] argues persuasively that we can’t “age-proof our lives” and that this disease, “the dark side of longevity,” is a “looming health catastrophe” for us all. “My greatest fear,” she writes, “is that mine will be the family next door by midcentury.”

— Jane Gross, The New York Times, September 1, 2014

 

…Value the moments, the pearls of wisdom,
their smile and humor.”

— St. Elizabeth

 

Drawing: Alzheimer, Krankheitsfälle d. spät. Alters.  Verlag von Julius Springer in Berlin. Plate 5, Fig.2, “accumulation of lipoid material in a plaque near a capillary. becker.wustl.edu

Which end up?

Former NBC “Today” anchor Katie Couric had a colonoscopy on live t.v. fifteen years ago, remember? Surely I could write about the subject, if delicately put.

It was my husband’s turn a few weeks ago, not on t.v. of course, though a situation comedy came to mind — Jackie Gleason’s, perhaps.

“Why do I have to have one?” Peter demanded as I handed him four little pills to start the cleansing process.

“Because you had polyps five years ago,” I said.

“Does everyone have colonoscopies?”

“They save lives,” I preached, “and they’re recommended for everyone 0ver fifty.”

He grumbled.

No one likes to prep for a colonoscopy, but a patient with dementia is “lucky.” He won’t remember from one minute to the next why he has to drink quarts of gritty stuff dissolved in an electrolyte-filled sports drink, why he can’t eat for twenty-four hours, nor why he shouldn’t take the dog for a long walk lest he get caught short!

Peter is not a morning person so his early appointment wasn’t to his liking either. We waited just minutes before the nurse called him. “I’ll come too,” I said.

“No, I’ll get you when he’s ready.”

I knew she’d be back quickly. “Mrs. Clarke, come with me, please.” She chuckled as we walked. “When I asked Mr. Clarke why he was here, he didn’t know.”

“He can’t remember,” I said.

“He thought endoscopy?”

I laughed. “Um, no, wrong end. Colonoscopy.”

After she’d taken his BP, asked more questions (which I answered), and started an IV, she left so he could undress and put on a hospital gown. He didn’t understand why he had to take all his clothes off — he’d keep his knickers on, he said. “Nope, those too,” I insisted, as I tied him into a gown obviously designed for someone three times larger than my skinny husband.

Soon, our jolly, effervescent gastroenterologist popped in, offered a few reassuring words, and away they went.

Peter was back within thirty minutes, accompanied by a giggling nurse and chortling anesthesiologist. “Your husband is a riot,” he said. “When Dr. R finished, I asked Peter to open his eyes, but he opened his mouth like he was at the dentist!” Yup, he still had the wrong end!

The doctor came in to deliver good news and bad. “You had four tiny polyps,” he explained, “and they looked ‘fine,’ but we will send them off for biopsy.” Peter’s blank look told me he didn’t understand a word. “But the good news is, it takes about seven years for any new polyps to become cancerous, if they’re going to, so no further colonoscopies will be required.  In other words, age will probably claim him before an attacking polyp. “Sounds terrible, that option,” the doctor whispered to me.

I shook my head. “He’d rather that than another prep.” Peter waggled his eyebrows in agreement.

The doctor showed off the “beautiful pictures” of Peter’s colon as if they were photos of his grandchildren. I raised my left eyebrow to say that only a gastroenterologist would think they were pretty! That prompted him to trot out a joke from his vast repertoire, this one about Yankees. I reminded him, a Southern gentleman, that I’m a Yankee.

He was undeterred. “Yankees are like hemorrhoids. When they come south, they’re a pain in the ass, and the pain doesn’t go away until they head back up north.”

 

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.

 

Magic pills? Wonder drugs? Snake oil?

She’s his advocate, his ears, his caregiver. She’s an attractive blonde, late forties perhaps, who takes care of her father in a new tv commercial. They look alike and maybe they’re really related. Perhaps it isn’t a made-for-tv reenactment.

The spot promotes Namenda (memantine hydrochloride) XR, a medication long prescribed for people with moderate to severe Alzheimer’s. The new extended release (XR) version, with seven additional milligrams of the active ingredients, offers once-a-day convenience. Used in combination with another commonly prescribed drug, Aricept (acetylcholinesterase inhibitor, AChEl), the two may keep symptoms from worsening, at least for a while.

This is one of those commercials that urges you to ask your doctor about this drug for your loved one. An announcer gives the laundry list of side effects: nausea, Screen shot 2015-01-31 at 5.05.22 PM_2vomiting, diarrhea, constipation, loss of appetite, dizziness, tiredness, weight loss, swelling in hands or feet, fast heart rate, easy bruising or bleeding, unusual weakness, joint pain, anxiety, aggression, skin rash, redness or swelling around eyes, or urinating more than usual. Makes you wonder why you’d want something that might add to your loved one’s misery. Frankly, I think all those “ask your doctor” commercials should be banned, but that’s a post for another day.

Peter has taken both drugs for more than five years with no side effects. His neurologist asked recently if I thought the meds were helping. “How would I know?” I said. She shrugged.

The commercial oozes warm fuzzies. We see the concerned, loving daughter, her young children, and her sweet-faced father who is included in their activities, but who seems vacant, absent. “All my life he’s taken care of me,” she tells us, adding that it’s her turn to take care of him.

All well and good, and we love her for her dedication. But, jeez, am I alone in wondering why we never see the caregiver’s frustration? Neither medication is a cure. The best science can do is slow the disease for a while.

And what can science do for caregivers? Is there a magic pill for us?

If a camera were mounted in a corner at our house, it would record smiles, yes, and silly laughter, but it would also record heated talk, lip-biting, teeth-gnashing, hair-pulling, and tears behind slammed doors. The camera would see me trying to read, uninterrupted, for fifteen minutes. It would see someone else cooking, cleaning, making appointments, counting out pills, and making endless cups of tea to sooth upsets, his and mine.

Oh yes, I know there is help for some of those tasks, but I can’t—won’t, not yet—delegate most of them. Our wedding vows weren’t the traditional ones, but I did, “…promise to honor and tenderly care for you…through all the changes of our lives.”

A camera would also see the occasional enveloping hug, and Peter asking, as he always does, “What would you do without me?” At my eyebrow-raised, tilted-head glance, he would change his question to, “I mean, what would I do without you?”

And, as we always do, we’d laugh at his little joke. Truth is, I often don’t know what to do without him.

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