Channeling Henry VIII.

This bit of gallows humo(u)r is, well, an interlude in our own Shakespearean tragedy.

Sunday’s visit with my husband was difficult, especially since I’d gone to see him after a pleasant few hours’ brunch with my friend Karolyn. She and I had empathized and giggled over our similar lots in life. When I left I was in a good mood, but when I arrived at the facility where Peter lives and headed toward his room a nurse coming towards me shook her head. “Peter has done even more packing up this time,” she said.  And good morning to you too, I thought. I let that slide for the moment.

Peter was in the dining area, just finishing lunch. He did his usual surprise act when he saw me. “Oh, it’s you!” he said. “Where did you come from?”

“Out there.” I pointed to the entryway. “Are you finished? Have you had dessert?” There was still food on his plate, not surprising since he doesn’t like the meals.

“Oh, yes” someone said,”he had a scone with a beer in one hand and a cup of coffee in the other.”

“A scone and a beer? What would your old granny say?” I asked. He shrugged and gave me his exaggerated fake wink.

It was a pleasant day so we went outside to the gazebo. After a few minutes of idle chat, I took a deep breath and prepared to have another Talk with him. A month ago he’d asked if he would ever get out of “this place.” Since he’d  asked directly I answered as plainly as I could hating, hating, that I must do it. I explained again that because of his falls, plus his wandering and getting lost, I couldn’t take care of him at home anymore. “I can’t lift you when you fall,” I said, “and I couldn’t always find you when you got lost.”

“But I don’t fall,” he said, “and I’ve never gotten lost.” I raised my left eyebrow. “Well, I don’t remember if I did.”

“I know you don’t remember, but that’s part of the problem. But you can’t help it.” I put my head on his shoulder and patted his knee. “I know you don’t want to be here and I don’t want you to be here either. But this is the best answer to a bad situation.” He was quiet. Tea, I thought. A cuppa cure-all. “Let’s go in and I’ll make us a cup of tea,”

I was shocked when I opened the door to his room. The nurse was right. He’d created even more mayhem than usual. This was the day same he’d gone so far as to hide his tv set. I bit my tongue to keep from saying what was on my lips. “I’ll make tea after I tidy up,” I said.

“I’ll help! What shall I do?” he asked. I nodded towards the bed where he’d stacked every single thing that that would fit. “I’ll put these clothes away, shall I?”

“Good idea,” I said. He hung up his shirts neatly, making sure they were buttoned and straight, while I put everything else away. Forty minutes passed before I fixed tea.

Peter frowned while he sipped, lost in thought. “It’s funny,” he said finally, waving his arms around, “I’m healthy all over the rest of me body. It’s just me head. I can’t remember anything.”

“We could chop off your head!” I said.

As quick as ever in his best Cockney accent, he said, “Off wif ‘is ‘ead!” And with no hesitation, he began to belt out,

I’m ‘Enery the Eighth, I am,
‘Enery the Eighth I am, I am!
I got married to the widow next door,
She’s been married seven times before
And every one was an ‘Enery
She wouldn’t have a Willie nor a Sam
I’m her eighth old man named ‘Enery
‘Enery the Eighth, I am!

We laughed and laughed and, for the moment, nothing else mattered.

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

The worst weeks of my life so far.

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

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

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

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

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

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

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

I wouldn’t wish any of this on anyone.

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

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

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

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

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

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

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

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Oh! My funny Valentine!

Valentine’s Day! Chocolates and cupids, hugs and kisses, champagne and…more champagne. Right?

Not so much around here these past three days. Still, I believe firmly that no matter how very bad things get, there’s always a bright side, always a laugh hidden somewhere amidst the crumpled tissues.

Yesterday, after hours at the doctor’s office, a laugh presented itself that had me giggling all the way home.

[Sometime in the next week, I’ll write a post about the second worst day of my life so far, but for now, this is the laugh that made yesterday tolerable.]

I’d taken Peter to see Dr. T for a follow-up to, um, what happened Sunday. Suspecting a possible UTI (urinary tract infection), at the end of the consultation Peter was ushered to the restroom to provide a specimen…you know…pee in a bottle.

I sat in a chair at the side of the lab to wait. And wait. When the nurse walked around the corner I asked if he was still in there? I thought maybe he was out of my line of sight waiting for lab results or maybe they were drawing blood too.

She nodded a bit frantically. “Should I try to get him out?” she asked.

“Yes, or I will if you want,” I said. I got up and walked into the lab just after she knocked on the toilet door. Peter popped out holding a nearly overflowing cup. There was something in his other hand and he had a silly look on his face as he walked toward me.

“Are you OK?” I asked. “What’s in your hand?”

He showed me. Although he couldn’t explain — words fail him most of then time these days — apparently he’d been waiting for someone to tell him to come out, so he’d amused himself by folding paper towels into hats.

OMG, how I laughed! If ever there was a time for bathroom humor this was it.

Header photo: Peter’s paper hat or maybe it was his attempt to make me a Valentine?

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

Could be a whole lot worse!

Most of January, I was mired in gloom worthy of Charles Dickens’ Bleak House, and for no good reason really. We are fortunate to have good long-term care insurance, I have companion help for Peter, and house-cleaning help for me. Best of all, Leslie is close by to bolster me, and Carolynn cheerleads from 596 miles away.

Could be a whole lot worse.

A well-timed phone call jerked me right back to my senses last week. Several times a year, our insurance company nurses call to ask routine questions: “Does Mr. Clarke need help bathing himself? Does he need help brushing his teeth? Has Mr. Clarke had any falls lately? Does he need help toileting? Is he incontinent? Does he have a problem falling asleep or staying asleep?” I always answer no. When they ask him directly how he’s doing, he charms them with a cheery “So far, so good.”

Before she rang off the nurse asked for more detail about his days. Peter is way more forgetful than the last time she checked, I told her, and more confused generally. And no, he can’t really converse except with me or other family members. We try to fill in the blanks and make sense of what we think he wants to say.

But, Peter copes better than most. He doesn’t need nursing care — yet — and he still “lets the dog walk him twice a day.” His sense of humor is intact, and although he often wears me out with his silly jokes and continuous corny patter, he takes care of me in the only way he can. He makes me laugh.

A recent morning for instance.

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If not now, when?

I’d been begging him to get rid of the moth-eaten, raggedy wool sweater he wears all the time. I dug into his drawerful of English cardigans —”cardis” he calls them — and found a marine blue double knit one. “Maybe you’d like to wear this for a change,” I said when I handed it to him. I thought sure he’d recognize it as one his mum had sent more than forty-five years ago, but he didn’t. He’s never worn it, but he’s always said he would when he was an old man. If not now, when? I thought.

Darned if he didn’t put it on right away. I wasn’t surprised how perfect it looked with the blue tattersall shirt he was wearing. I spread praise thickly.

He looked in the mirror, tucked his chin in, puffed his chest out, and said in a rumbling Churchillian voice, “Hrmp hrmp, erm, yes, jolly good, yes, I say, yes, mmm….”

When I burst out laughing, he wrapped me in a hug and I asked myself, what in the bloody heck do I have to feel depressed about?


2016 National Society of Newspaper Columnists’ contest, second place, blog category.
screen-shot-2016-12-07-at-10-14-53-am

Apples and pears…stairs.

Peter looked at the lunch I was fixing for myself, my usual apple, chunk of Cheddar cheese, glass of milk. “Where did you get the apple?” he asked.

I pointed to the old wooden bowl that has always occupied our kitchen, that is always filled with fruit, and the occasional veg.

“Oh, I didn’t know that was there.” He picked out a piece of fruit, came back to the sink and turned on the water.

“That’s a pear,” I said as he washed it off.

Instantly, he collapsed laughing, his face as red as the apple’s cheeks, eyes twinkling. He hugged me. “I know it’s a pear, silly. I’m not that far gone.” I laughed with him and savored the hug.

That far gone, no, but he is more and more confused by the day, less and less able to find words or remember the simplest things. Still, I was grateful for the moment, the laugh, and the hug!

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Fruit with acorn squash.

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

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

Hello! My name is…

Bad enough that our doctor and our dentist have the same last names. Not only that, but our doctor and Peter’s dermatologist have the same first names and very similar last names. Add to that my childhood friend and another friend from the not as distant past have the same first names. The former’s husband has the same first name as the latter’s surname.

My poor husband doesn’t have a chance of keeping all that straight.

Recently, while Skyping with our friends in England, Martin and Anna, Peter was confounded by a question Martin asked. He came running to me, mid-Skype, to ask about “an old house.” I had no idea what he was talking about, so I followed him here, to my computer. “That house,” Peter said, pointing to a small painting of our previous home on the wall behind him. His friend could see it as they talked, and wondered about it.

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Peter with son-in-law Martin.

“Martin painted that for me for Christmas about thirty years ago,” I said.

“Martin? Martin doesn’t paint,” Peter scoffed, while his friend laughed on the other side of the Atlantic.

“No-o, not that Martin,” I said, “son-in-law Martin!”

“Oh,” he said. “Well, anyway, I don’t remember that house.”

“Peter, we lived there seventeen years,” I said, frustrated. I loved that house, loved living there. He shook his head. Nope, he neither remembered the house, the little village, nor that Leslie’s husband Martin painted the picture. Peter’s old college mate sat at his kitchen table chuckling, not that the confusion was really funny. But, might as well laugh as cry, eh?

Version 4

Mates of old.

Call a spade a spade.

From Sally Hepworth’s touching, witty, insightful, heartbreaking novel, The things we keep, these two paragraphs jumped off page 21 and imprinted themselves on my brain and on my heart:

Dr. Brain once told me that an Alzheimer’s brain was like the snow on a mountain peak—slowly melting. There are days when the sun is bright and chunks drop off all over the place, and there are days when the sun stays tucked behind clouds and everything remains largely intact. Then there are days — spectacular days (his words) — when you stumble across a trail you thought was gone forever.

“I get the feeling that since the analogy involved the words “mountain peak” and “spectacular,” Dr. Brain thought this news wouldn’t be depressing to hear, when in fact, the opposite was true.  I think I’d have felt better about my prognosis [Anna is 38 and has early-onset Alzheimer’s] if he’d reworded a little. Something like, The brain is like a filthy, stinking pile of crap. When the sun comes out, it stinks worse than you can imagine, and when it’s cold or cloudy, you can barely smell it at all. Then there are the days that, if the wind is coming from a certain way, you might catch the cold scent of a spruce for a few hours and forget the crap is even there. With that analogy, at least we’d have been calling a spade a spade. Because the truth is, if you have dementia, your brain is crap. And even if you can’t smell it right this minute, it still stinks.”

Graeme Simsion, The New York Times bestselling author of The Rosie Project, praised The Things We Keep, with these words: “A compelling read that touches on important themes, not least the different forms that love may take.”

TTWK Cover

The things we keep is a book to read and read again. Both funny and sad, it’s a page-turner I raced through, but a book that I didn’t want to end. I don’t know if Hepworth has first-hand knowledge of Alzheimer’s or if she just has a brilliant imagination. Whatever, she has captured what I think I see happening in my husband as the disease increases its grip.  And, yes, it stinks.

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The things we keep, Sally Hepworth, pp. 21, St. Martin’s Press ©2015

 

What lurks in the shadows of his mind?

He sat across from me. The restaurant was very crowded, very noisy. Talking wasn’t possible, not really. But Peter kept trying to converse. I reminded him we seldom talk across our own dinner table, so it doesn’t matter if we don’t talk when we’re out.

“But, it’s different,” he said, “when we’re somewhere else.”

“I can’t hear a word you’re saying anyway,” I reminded him.

He nodded and sat back. He studied a spot on the wall behind my head. I watched his face. The V-shaped creases between his brows deepened, his left eye twitched, he shook his head slightly. He was far away.

“What are you thinking about?” I asked.

He shook his head again. “I’m trying to remember what it was like when I first came here.”

“To America?”

“Yes. Things have changed, but I can’t remember…”

“But that was in 1968! Nearly fifty years ago.”

He nodded.

“I’m going to have to learn to read your mind,” I said.

His eyes brightened. He smiled. “Well, if you do, tell me what you find in there.”

His remark was so apt we broke into laughter. The people at the next table must have wondered what was so funny. If they only knew.