Who is that masked woman?

I’ve only seen my husband in person four times since COVID-19 isolated us and those visits were through the fence that surrounds the facility where he lives. We can’t share a hug or hold hands, but at least I can see him, and he, me, although he pretends he doesn’t know me.

Leslie, Martin and I visited Peter recently, a visit arranged by a nurse who urged him outside. We chatted about 30 minutes until Les and Mart had to leave. I stayed longer and tried to answer his questions about the virus. He wants to know if it’s “fixed” yet.  Hard enough to explain the enormity of a pandemic to anyone at all, much less someone who has Alzheimer’s Disease. He repeats his questions over and over and I reply with the simplest explanations I can. That particular day he was clearly distressed. I tried to reassure him that he was safe where he was, while we on the outside of the fence must wear masks and be extra cautious because the virus is so contagious.

As I drove away he kept pace inside the fence with my car. I did the Queen Elizabeth wave to make him laugh, but I was fighting tears. Maybe he was too. It was my worst day since the day he was admitted more than two years ago. I don’t know why it was so difficult. Maybe it was seeing him so uncharacteristically sad.

When I visited the next week he seemed more his old self. I’d meant to take a photo of him during the other visits but stopped myself. Did I really want pictures of my husband behind bars? So this time I decided a “selfie” of the two of us would be fun. It wasn’t easy to stand six feet apart, factor in the length of my arm and still get both of us in the shot. He turned on his usual Peter smile—he’s such a ham—while I snapped several pictures.  When I showed him the results, again at distance, he wondered what “that thing” was on the side of the photo.

“That’s me silly,” I said. I tugged at the mask I’d had on the entire the time we’d been talking.

“Why are you wearing that?” he asked, laughing. I explained yet again.

Then he wanted to know why his head was so small in the picture. I didn’t try to explain perspective nor remind him of the six feet between us. When I pointed out that we’d been photo-bombed by the American flag, naturally that spurred questions about why the Union Jack wasn’t there too. “Because, the Fourth of July is coming up. That’s when we celebrate our independence from you lot,” I said. At least we were both laughing when I left that time.

 

Header photo: Peter’s happy “photo face” and my masked chin, neck and shoulder.

 

 

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Sometimes the cure is the worst part of being sick.

To say that the past few months were slanted downhill is to compare one lighted candle to the raging fires in Australia. But even to presume that the goings on in my life, our lives, are more awful than lives of others dealing with dementia, or any tragedy, is ridiculous. I cringe when I hear myself whining to family or friends.

I look for laughs as I would look for salve for a burn.

Take the recent several weeks. Peter had a miserable cold for four or five days although he insisted, as he always does, that he felt fine. His rheumy red eyes, dripping nose (also red), and growly voice belied his words. He was way better the first Sunday in this stretch. It was a gorgeous day, more like early October than early January. When I suggested a walk he agreed readily. We strolled along the trails at the facility where he’s lived for nearly two years. He enjoyed being outside. Two days later a rumbling cough developed. A gargling hippo came to mind.

Although he didn’t have a fever, he had feverish symptoms—he wouldn’t eat, he wandered the halls, he stayed awake all night, slept all day, he was incontinent, he babbled, he went into other resident’s rooms and, in one instance, climbed into an occupied bed. Not funny to the occupant, I can imagine.

At the after-hours clinic he fell asleep in the waiting room. It was a long wait but according to Mark, he’d slept all that afternoon. Once in the clinic proper, he had to provide a urine specimen. Way easier said than done, especially when he did not want any help, thank you very much. I convinced him not to scoop water out of the sink or the toilet and I proved to him that the breast pocket zipper on his jacket was not the one he needed to unzip. You get the picture. We were both giggling by the time that was over.

No pneumonia, the PA said, and Peter was his usual English stiff-upper-lipped self for the blood draw. He looked as if he might fall asleep right on the table. Lab tests showed no UTI, often a culprit in such cases, but the off-the-chart glucose levels were troubling as was a raging white blood count.

My contrary husband has a history of refusing pills. The antibiotic prescribed, an enormous capsule, would be hard to swallow for a willing patient, but considerably worse for Peter who chewed rather than swallowed. The taste made him sick, of course. Not without reason the pharmacist’s notes suggested the patient take probiotics and/or yogurt for the course of treatment. Enough said!

Peter is back to his old self now, but with changes in place—a more accessible doctor, additional tests, a selection of liquids to try in attempt to keep him hydrated, among other things. Forcing liquids only makes him rebel, but he did like the no-sugar grapefruit drink and Gatorade I bought. At the end of the day there are only so many cups of tea I can force on my English husband whose mantra has always been “the time for tea is every hour on the hour.”

Header photo: Peter enjoyed the warm October-like day in January.

 

 

2016 National Society of Newspaper Columnists’ contest finalist. 

A man and his dog.

After several years together dog owners and their dogs begin to look alike, so they say. They begin to act alike too, in my opinion. Take Peter, 81, and Nobby, his golden doodle, nearly 12.  Both are mischievous and have the inherent ability to make people laugh at their antics. Both would fetch sticks for hours if their years hadn’t slowed them.

The final week of October was a week I’d like to forget and one Peter forgot as it was happening.

Monday, Nobby had surgery to remove a suspicious lump from his left front leg. While he was anesthetized, the vet cleaned his teeth, too. When I picked him up, he was wobbly, confused and so ashamed of the blue cone around his head. It interfered with his food and water consumption, his ability to walk through doors easily and, worst of all, he couldn’t find the right spot outside, um, to mark his spot.

Tuesday, just as I was leaving for my own teeth-cleaning appointment, the phone rang. Peter had had a bad turn at lunch. He was disoriented, more confused than usual, incontinent and his temperature was 101.2°.  Would I come? Of course I would. Hindsight tells me a trip to the dentist’s office would have been a piece of cake and Peter likely would have chosen a root canal over what followed.

His temperature had spiked by the time I got to his room. His face was so red it was almost incandescent. “Can someone take his temp please?” I called out. Whoa, it was 104°! I put cold washcloths on his forehead while waiting for the doctor to return my call. I requested Tylenol from a nurse. Nunh uh, without doctor’s orders not even Tylenol can be given to a resident.

As is always the case, Peter said he wasn’t sick. He tried to bluff his way past my concern. He was as dazed and unsteady as Nobby was on Monday. I urged him to drink water, then steered him toward the bathroom. Like Nobby the night before, Peter didn’t know why he was in there, but at least he didn’t have to go out into a dark, drizzly night.

We went to the emergency room where he was seen quickly enough, though it was a five-hour ordeal. He was hooked-up, jabbed, poked and questioned. He tugged at his IV, tangled the blood pressure tubing and tried his best to get the pulse oximeter off his finger. He bellowed and cursed during one particularly sensitive probing. Later he erupted like a child when a nurse gave him Tylenol tabs and a cup of water. “Tastes awful,” he yelled, even as I cautioned against chewing. This was not the behavior of the mild mannered man I married. This was dementia talking.

Like Peter, Nobby refuses to swallow pills, even wrapped in Pill Pockets. He spits them out with such force they fly across the room.

With a presumed diagnosis of prostatitis, Peter was finally admitted and in a room by 9:15. A steady procession of nurses, students and doctors paraded in and out. He couldn’t answer any of their questions, still insisted he wasn’t sick, still babbled as if drunk. When one asked his full name, he slurred his words. “Whydoyawannaknow?” he asked. Did he know the date or where he was? I cringed. Hadn’t she read his chart? Didn’t she see that he has dementia and lives in a memory care unit? Finally, gritting my teeth, I said that he hadn’t been able to answer those questions for years.

Meanwhile, Nobby had been home alone for hours. Leslie went to him after work. When I got home, the dog, way peppier than the day before, wanted to play. I went to bed.

Wednesday, the doctor definitely ruled out a UTI, flu, pneumonia and several other possibilities, but had ordered blood and urine cultures. Peter was to stay another night. Leslie and Martin brought dinner to me and afterwards, she went to the hospital. He was his goofy self, she texted. He walked her to the elevator so many times, she finally shut the door to his room and told him firmly to stay there.

Peter the ghost.

Always a trickster.

Thursday, Peter was back to his old tricks. He hid in doorways and yelled boo at passing nurses. He joked and teased and wouldn’t give anyone a straight answer. He’d pulled his IV out and was so energetic that they turned off the “fall alarm” on his bed. When yet another nurse arrived, Peter said he wouldn’t answer any more questions. Still she tried. “What hobbies have you enjoyed, Mr. Clarke?” she asked.

He had an devilish look on his face when he pointed to me and said, “Her.” She blushed, I laughed and Peter turned as red as he’d been two days earlier.

By the time I got home, Nobby had discovered he could lick his sutures through the cone, and later still he figured out how to bend the cone for unobstructed access to those pesky stitches.

Friday, Nobby’s doctor called with good news. “The lump was benign!” she said. “I’ve never heard of it, I can’t pronounce it, but it’s something particular to poodles.”  Good news indeed. That evening, Peter was seen eating popcorn while glued to “The Queen” with Helen Mirren. Such was the week that was.

Header photo: Nobby looks good in blue.

 

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Pick up sticks? Who me?

On this frigid April day I never dreamed I’d have reason to write a sequel to my most recent post, “Between the sticks.” I expected to be writing about what’s going to happen tomorrow.

This morning I took my husband for his annual check-up with the dermatologist. Right away, Dr. J asked Peter if he’d been alright, had anything to report?

“No, I don’t have anything, but I’ll be she does, ” Peter said, nodding at me.  The doctor and his nurse laughed, as they always do, at Peter’s quick humor.

Dr J looked to me for answers. I told him about the several spots on Peter’s head, ears and arm, and some on his back. He nodded and began checking methodically. It was so cold in the exam room that the nurse hadn’t given Peter a gown. “Too cold,” she said, “doctor will just pull your shirt up in back to examine you.”

Turns out, Peter had put two shirts on — another cause for chuckles — so pulling them up was a struggle. Dr. J took one look at his back, one spot in particular, did a double take and said, “That’s a tick!

“A TICK?” I yelped.

“Sure is,” he said, as he asked  the nurse to fetch tick-removing supplies. He numbed the area, pulled the little bugger out, then drowned it in alcohol. Then he wrote a ‘script for Doxycycline Hyclate. “Better to be proactive and start this right away, than to wait six weeks for the lab analysis to finish,” he explained.

Lyme Disease is the unwanted gift a tick bite brings to people and their pets after they’ve feasted on infected deer and mice. I felt foolish for having seen the spot but hadn’t realized it was a tick. At least it wasn’t engorged and, really, it looked like the other two spots I’d noticed. Thank goodness they weren’t ticks as well.

Peter and I don’t need anymore stumbling blocks right now, but try explaining a tick and what its bite can cause is like explaining why pigs don’t fly to a two-year-old.

“No more picking up sticks in the woods,” I told him.

“Why?” he asked. I explained ticks live in woodsy areas. I explained that we give Nobby tick medicine every month to keep him safe, and Nobby doesn’t even have access to the woods.

“But I don’t go in the woods,” Peter said. “I never do.”

I rolled my eyes and didn’t try to explain further. Too much information is as bad, in our case, as no information at all.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

 

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?

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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Header: Tiny puzzle puzzles.

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

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.


Unknown

Header photo: Willow glows at dawn.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

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

Header photo: A sneeze magnified.

2016 National Society of Newspaper Columnists’ contest finalist. 

‘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.

Screen Shot 2015-10-23 at 2.54.27 PM

*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

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

 

 

 

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.

Screen Shot 2015-08-09 at 9.25.15 PM

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

Header photo: Morning glories keep their eyes on Peter.

2016 National Society of Newspaper Columnists’ contest finalist.