Author Archives: judithclarkewrites

Lemons? Squeeze!

Posted on by under Caregiver, Chores, Problems

Just when I thought I couldn’t make any more lemonade from the lemons that landed in my juicer, encouragement from casual acquaintances has rejuvenated me.

All along, family and longtime friends have been supportive as Peter and I struggled along the hellish road paved with plaques and neuro-tangles. He is largely unaware that support is even needed, but I’ve welcomed every kind word, every smile, every hug, note, email or call. I’ve been surprised—no, amazed—by the helpful ideas and kindnesses from the pharmacist, Peter’s helpers Mark and Bill, the courtesy van driver, the mailman, the waiter, Nobby’s groomer, and from my daughters’ friends and colleagues, many of whom I don’t know.

Even though their main concern is for Peter, nearly all ask how I’m doing. Do you mind coming home to an empty house? one asks. Are you afraid in the evenings, asks another. Is it hard to eat alone? someone else wonders. How do you do all the things it took two of you to do before?

Actually, no, I don’t mind coming home to an empty house, no, I’m not afraid in the evenings, no, I don’t have a problem eating alone, and in reality, I’ve been taking care of the things we shared for a long time. Oh, I wish I didn’t have to deal with the taxes, or take care of the bills, or remember to get gas for the car and the lawnmower, or decide how much or how little to buy at the grocery.

My husband’s slow, ten-year decline forced me to get used to the idea that there was no way back. These past five years the downward tack has been more rapid and way worse.

In truth, I’ve been practicing to be a widow most of my adult life. I was a divorced mom with two young daughters in my thirties. Peter and I were in our early forties when he finally agreed to marriage—he dragged his feet for seven years. We’d never lived together, nor even in the same town, so marrying again took some getting used to for both of us. We were both married to GE too. He traveled a lot, but my job was local so I came home every night and walked the dog. Fred didn’t talk much but he was a nice companion.

Because I retired 10 years before Peter, I was still on my own most of the time. His travel schedule never eased, but I was fine working from home with Fred and new puppy named Decker for company.

But, when Peter retired he hadn’t forgotten I’d promised we could move back south. And suddenly we were together All The Time. No longer could I have what he dubbed “twigs and berries” for lunch, or pasta tossed with black olives, fresh tomatoes and fresh Parmesan for dinner. No, it was meatandpotatoes every evening. Home Together.

He spent days cycling, woodworking, gardening, puttering. I continued to read, write, garden and, a newfound luxury, lunch with friends. If we were home at noon, he worked a crossword puzzle while I read a book. At dinner we talked a bit, but chatters we are not.

Now, again, we don’t live together. I know it’s easier for me than for him. I’m in the same place—home—while he’s in a strange new environment that will never feel like home no matter how hard I try to make it seem so. He’s still as solitary as he ever was and so am I. The upside, and there is one, we talk more now than we ever did, we laugh as much, and the “lovey-dovey” stuff, Peter’s term, has returned. I visit four or five days a week, and I’m greeted with bear hugs and squeezes. Even though the situation isn’t good, and the reason for it is horrible, it isn’t as bad as it could be.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

2

Channeling Henry VIII.

Posted on by under Caregiver, Control, Laughter, tears, Remember

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. 

 

 

Ninety-eight days and counting…

Posted on by under Caregiver, Childlike, Control, Numbers count

Ninety-eight days have passed since my husband was admitted to memory care, first for a month’s respite then, sadly, as a permanent resident.

Ninety-eight days with ups and downs as stomach-twisting as a rickety rollercoaster ride.

Ninety-eight days of uncertainty, confusion, frustration, anxiety and sadness. And that’s just my list. For Peter, I’d add to those anger, fear, anguish and longing.

Since those first heart-breaking mid-April days — I remember them as very cold, though they were not — the succeeding weeks have glommed together like cheap paper towels. There’ve been bad days and good, more lows than highs, a few baby steps forward, but more giant steps back. Silly me, I thought when someone else took responsibility for my husband’s safety, feeding and care, I would be able to catch up with myself. Not so. But it’s not about me anyway.

Within hours of his admission Peter had a meltdown that prompted a call from the evening charge nurse. Would I talk to him on the phone to see if that would help? Yes, I would. When that didn’t work, would I come to try to calm him? Yes, I did. It took several hours, but he was laughing by the time I left. Oh, I’m no hero, but I generally know which buttons to push. The staff had yet to learn.

Within seventy-two hours he’d gotten out of the facility, even as his ankle bracelet screeched while he walked through the main door. A maintenance man found him behind the building near an area surrounded by woods.

By the third, maybe fourth, week he started to acclimate a tiny bit.

The food, though nutritious, does not appeal to my picky husband. And showering with a female aide hovering nearby is not gonna happen. Without me to nag him about changing his clothes, he doesn’t. Instead of putting his things in the laundry, he hides them in the waste baskets and they’re gone forever. His slippers, leather scuffs, have vanished several times. Once I found the left one in a wheelchair parked outside another resident’s door. A few days ago I found the right one under a table in the shower room. But the left one had disappeared again. Peter isn’t necessarily to blame. Residents in memory care units are notorious for “stealing” from other residents.

Houdini could be his middle name.

Peter advises the cat on how to escape.

No, I really can’t blame him for any of this. No one can know what it’s like to be so confused and disoriented all the time. During his first 12 days there, he’d had relative freedom. But he was quickly moved to the “lock-down” wing after he busted out a second time. He left for an outing with Mark in the morning, but returned to a different room that afternoon. He didn’t even realize he’d been moved. And a few weeks later when we were finally able to move our furniture in to replace the borrowed stuff, he never noticed the change.

So, he’s safe under lock and key…touchpad and code.

Except he isn’t. My husband is an escape artist. He snuck out in my care, and when he wants to get out, he continues to walk out right past the nurses. For years Peter took Nobby to visit the residents where he himself now lives. He knew the code to get into the locked areas and how to get out. Served him well when he was the one on the inside. Frankly, I laughed when I heard that he remembered the code. He can’t remember names or places or much of anything at all, but numbers? His engineer’s brain still computes with reasonable ease. Then, too, he can read. There’s a sign on each locked door that says: Press for 15 seconds and door will open—fire code requirement.

It’s all about control.

From the first days he looked for ways to maintain control. Leslie and I set up his first room and made it as homey as we could. It was a large attractive room with a pleasant outlook. He very quickly rearranged things to suit himself—he hid the family photos, stacked books and puzzles in a corner, and put his tooth and hairbrushes in the little refrigerator that was left behind by the previous occupant.

Less than two weeks after he was moved to the more secure area, he started conjuring more creative ways to dominate his surroundings. He folds his clothes and conceals them in pillow cases, then secures them with his belts or wrapped in his shirts. Lately he’s wrapped everything, gift-like, in towels or sheets. He stashes handkerchiefs in the travel toothbrush holder he requested, not for his toothbrush, but to conceal whatever he could stuff into that little green cylinder. He hid family photos underneath a framed picture of his dad.

In more recent weeks he started taking the screens out of his windows. Almost every evening he disconnects his television, but two days ago he hid it. From himself or from me? I found it and hooked it up again, even though I always say I won’t.

Days 94-98 have been more troublesome. No matter howfrustrated I get, I know Peter is a hundred times more frustrated—he isn’t to blame for his shenanigans. I tell myself that while I bang my head against a brick wall.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Two laughs are better than none.

Posted on by under Caregiver, Good news, Laughs lost, Laughter

Laughs have been scarce lately. Stress, angst and tears blot out any chuckles my husband’s quick humor would usually egg on.

Twice this week, laughs ruled.

I visit nearly every day, in spite of advice from daughters, doctors and friends. As soon as I walk in — I know I shouldn’t do this either — I immediately begin to put the place to rights. I grumble, yes I do, as I put his clothes away, plug in t.v. and lamps, remove socks from his toothbrush holder, and find missing photos, pencils, and domino’s score pads.  Wednesday, in addition to the usual chaos his nightly dismantling causes, the comforter was turned so that the ends were dragging the floor off the sides of the bed.

“Did the aides make your bed or did you?”

“Is it right or wrong?” he asked.

“It’s the wrong way ’round,” I said.

“They made it,” he said quickly.

We laughed like we haven’t laughed in weeks.

The next day, his new doctor visited. “I’m Dr. K,” she said. She held out her hand asking, “Would you like me to call you Peter or Mr. Clarke or Dr. Clarke?”

“Hm-m, Dr. Clarke, I think. Sounds good.” She laughed and we did too.

A second laugh in two days, wow! Can’t beat that with a stick, as his ol’ granny might have said.

 

Header: Peter wore his Union Jack necktie to watch the royal wedding May 19. He enjoyed the tea and biscuits as much as I enjoyed the wedding.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

The worst weeks of my life so far.

Posted on by under Alzheimer's, Caregiver, Control, Dementia, Favorites, Laughter, tears

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. 

 

 

Pick up sticks? Who me?

Posted on by under Childlike, Nag

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. 

 

 

 

‘Between the sticks.’

Posted on by under Alzheimer's, Caregiver, Control, Obsessive, Problems

I started section one below on February 9, the first day of the 2018 Olympics. Danged if Life didn’t cause an interrupt. I no longer remember where I was going with a soccer reference, but I do know where I’ve been. It’s nowhere I’d recommend.

2/9/18 – The nicest thing I do for my husband is circle the soccer matches on the sports page. I jot the channel numbers next to the listings, too. Peter loves his “football.” I did not do it yesterday when the Olympic events began.  The winter games only come along every four years and soccer took a back seat.

People say I’m such a good caregiver, so patient with my ever more confused husband, always able to laugh at our plight. But really, except for reminding him about football matches, No. I’m. Not.

As his condition worsens my stress heightens. No surprise there. Exhaustion envelopes me like shrink wrap on a carton of mushrooms. While Peter sleeps easily and long — 10-12 hours a night, plus mid-day naps — my sleep is a power nap now and then and seven or eight interrupted, restless hours at night.

As Peter becomes more oblivious to things, I become more aware of every thing that could go wrong with our lives, our health, our house, our country, our world. While he sinks into what could be likened to torpor, I become more frantic about what needs doing, fixing, cooking, washing, repairing, mending, replacing.

Any caregiver who is on duty 24/7 will understand. I’m lucky in comparison to some because I do have help with Peter several times a week, two daughters to advise me, cleaning help, and friends to console me. But still I fret.

4/14/18 – Where I’ve been is in the throes of indecision and upset unlike any I’ve experienced on this caregiving journey. In my most recent posts I’ve written a lot about the problems, the angst. Yet, as I write, I cringe. Whining doesn’t help.

Since February 11 and all the chaos that followed that event, our lives have changed. For one thing, my formerly cussedly independent husband is now very needy. He can no longer do even the simplest things — make his own tea or a sandwich, walk the dog, or even walk by himself without stumbling or falling. All these are markers for the escalating effects of Alzheimer’s.

He can no longer visit nursing homes with Nobby. Even eating out is problematic because he can’t make up his mind what he wants, yet doesn’t want anyone to choose for him. He’s satisfied watching Netflix at home these days rather than going out to a movie.

I’ve had to take further steps to ensure his safety inside the house — locks on the basement door, for instance, and no locks on bathroom doors. I took rugs up lest he trip, put covers over the stove’s gas burners, and I never leave the house without him, even for a quick dash to pharmacy. “I am OK on my own,” he yells when I insist he come with me.

These days we play endless games of dominoes, occasionally go for coffee or a drive. He even refuses to walk Nobby because he doesn’t want me to go along. “I can walk by myself,” he insists. But he can’t, not any more.

The one thing my husband still can do is pick up sticks in our yard and  little patch of woods. He was thrilled two weeks ago when he could clean up a big branch that broke off our maple in heavy snow. He spent the weekend snipping, breaking, and sawing branches into precise lengths for the town’s after-storm pick-up. Son-in-law Martin arrived with his chain saw to take care of the biggest section.

Other caregivers would understand why such a silly thing as watching my husband’s obsessive twig collecting nearly drove me ’round the bend. When I complained to Martin he said, “He’s having fun, he’s out of your hair, he’s happy.” I laughed. He was absolutely right.

4/15/18 – Where we’re going is a post yet to be written, a post I don’t want to write. In the meantime, on this stormy Sunday afternoon, Peter is in the woods picking up sticks.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

He’s still my cup of tea.

Posted on by under Alzheimer's, Caregiver, Control, Scream
The Cambridge English Dictionary definition of kettle reads: kettle, noun, a container for boiling water, that has a lid, handle, and spout and is made from plastic or metal. put the kettle on. to start to boil water in a kettleIt had happened twice before and was only a matter of time before it happened again. Since his life-changing crash last month Peter has seldom made tea without my supervision. Monday evening I watched him, hawk-like, from the family room as he made tea without me hovering. I saw him fill the kettle, put a tea bag into his cup, and set it beneath the heat lamp above our stove. He stood in front of the stove longer…than…I…“STOP. DON’T DO THAT!” I yelled. Peter had turned the gas on and set the electric kettle on the flame. By the time I got there, the kettle’s plastic bottom had melted. It resembled a reentry module from a space shuttle. He’d managed to turn the gas off, but didn’t really understand what had happened.
“This is an electric kettle,” I said, more frantically than I should have. “You ‘fried’ it,” I added, attempting a feeble joke.
“It’s fine,” he said, “still works.” I shook my head, showed him the damage and dumped the kettle into the trash.

“No tea tonight,” I said, guiding him back toward his chair.

Ten minutes later he got up and asked if I wanted a cup of tea. I reminded him the kettle was toast but he didn’t understand that little joke either. “Burned up…like burned toast,” I said.

Yesterday I shopped for a another kettle. I thought about an old-fashioned stovetop one, but bought another just like the electric one we’d had.  Then I second- guessed myself and continued shopping, this time for a regular kettle like the one he’d grown up with.

Later, after showing him the new kettle that whistled like his ol’ granny’s did, I urged him make a cuppa. When he held the kettle over the cup to pour, he forgot to pull the whistle cover back. Most of the water went onto the stove and counter top. He tried again, with similar results but with me beside him to prompt.

Then, before bed I went to prepare the coffee maker for this morning. A smell? SMELL…OMG GAS!  I hadn’t supervised his last cup of tea and although he’d turned the knob to the left as he should, he hadn’t turned it all the way to “off.”  Gas hissed, though I couldn’t hear it in the other room, and I didn’t smell it until I was in the kitchen. I think Nobby knew something was wrong. He’d been nudging us for some time as he often does in the evenings. I think he was trying to warn us that we needed to get up and fix it.

When I explained to Peter what had happened, I tried to make light of it. “Good thing we aren’t smokers!” I said. He didn’t get that either, but he was quite pale. Then I remembered what I never would’ve thought my husband  would remember. His granddad Alf, then in his mid-nineties, had started having trouble making his tea. The final shot that forced Peter’s dad, John, into finding a nursing home for Alf was when he found the kettle on the gas hob, flames shooting to the ceiling. A pot holder had caught fire. John, widowed, had Parkinson’s Disease and needed help himself. He could no longer look after his father.

The electric kettle I bought yesterday went into service today, as have cookie sheet barriers across the top of my range.

The English are known for offering calming cups of tea in crises, but last evening, when we really needed a cuppa, I’d already hidden the stovetop kettle and was too shaken up to find the electric one that I’d stashed somewhere. It seeing action today though.

Header photo: the melted bottom of our electric kettle.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Just call me Lipton and pour the hot water.

Posted on by under Advice, Alzheimer's, Caregiver, Good news, Problems

Early in Peter’s the long journey, people warned me, Take care of yourself, take it easy, don’t wear yourself out. They were right, but I didn’t take their advice.

Several months ago, I added more hours to Peter’s two helpers’ schedules to give myself some time off. With those hours I run errands without worrying about getting home to Peter who can’t be on his own for more than a few minutes at a time. Really, he can’t be on his own for any time at all. And I’ve been able to schedule massages every other week, or go to the bookstore and sit with coffee and a new book for a whole hour.

I’ve wondered, how long can I continue doing this 24/7? What would happen to Peter if something catastropic happened to me?  He couldn’t live alone and he would make life miserable for himself and a caregiver without me as a buffer. Carolynn and Leslie have always said they’d take turns taking care of one or both of us. I know they mean it, and they would do it too, but at what cost to them? These are the kinds of questions that keep me awake nights.

I’ve known for months what I must do, but I played ostrich. I should have done my research, should have put my husband’s name on lists. The multiple choice answers to my question include Assisted Living? Nursing Home? Memory Care? Private Care Home? Additional Care at Home?

When it comes down to it, assisted living is what Peter has now. I assist. In any case, he would not qualify now — he is cognitively impaired, he wanders, and he’s close to late-stage Alzheimer’s.

Nursing homes conjure thoughts of elderly residents parked at the nurse’s station in wheelchairs. No thank you. He doesn’t need nursing care, he needs loving care.

Additional in-home care would likely expand quickly to ’round-the-clock. It may yet come to that, but that would be the last resort. My husband is uncomfortable, always has been, with too many people around, and I’m a loner too.

What about a “memory care” unit at a nursing home, I wondered? Six weeks ago, when I began to scribble thoughts for this post, I wrote, …no need yet for that level of care.

That was six weeks ago.

Since then, my emotions and any rational ideas I might have had have tossed in my head like wet blankets in a malfunctioning dryer — around and around, flip and flop, toss and turn.

After Peter’s accident four weeks ago (two previous posts) I understood what my friend Lourie meant — she has faced these questions too — when she said, “You’ll just know when it’s the right time…” to put him into care. Or when Karen, owner of a caregiving service, said, “Remember, you ‘have Alzheimer’s’ too. You have to choose what is best for Pete, and for yourself.” And I took comfort from something gerontology professor Dr. Elaine Eshbaugh wrote in a blog, “You are just a person — doing the best you can under circumstances that aren’t great. And you’re not alone.”  Others I begged answers from had similar thoughts — don’t feel guilty and don’t let anyone tell you what to do unless they’ve walked in your shoes.

So, after Peter fell on his face, literally, I was smacked in the face figuratively. I had not done my homework and I was not prepared  for the awful days that followed. Somehow, in the swirl of emotions, I thought of respite care, something I hadn’t even considered before. Leslie went with me to visit likely facilities. Respite seemed like the right answer for the short term. Rescue for both of us. Peter would get good care in a more pleasant setting than I would have imagined, and I could put my crumbled self back together again.

I started the process, I talked to family and friends and all agreed it was a good idea. They knew Peter’s state was precarious after his accident, and how exhausted I was. Then, then, Peter’s awful journey changed course. He morphed into the person he was several years ago, before his brain was ravaged by rampant plaques and neuro-tangles

Again my own brain tumbled with conflicting thoughts, but after further counsel from friends, I put respite care on hold. Our life is now paused in that blissful place where romance first bloomed.

A delay was the right thing to do.

“A woman is like a tea bag — you can’t tell how strong she is
until you put her in hot water.”  Eleanor Roosevelt

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

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

Posted on by under Alzheimer's, Caregiver, Control, Good news, Laughter, tears

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.

Fish&chips birthday lunch.
80th birthday, before beard trim…
…and after. He looks 60 again.

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.