Category Archives: Control

No laughing matter.

Posted on by under Cleanliness, Control, Dementia, Help sought, Laughs lost, Sickness & Health

First hug in 376 days

The stuff of my imaginings was the reunion and happy hug with Peter after the long, Covid-induced isolation more than three months ago. Less than five minutes after this picture was snapped, the glow was quashed.

I’d visited him isolated behind a large plexiglass shield a week or so earlier and I’d noticed then that he was wearing Crocs, no socks and his ankles looked swollen. His feet didn’t hurt, he said, but then he never has complained.

Carolynn, here the week of our reunion, was thrilled that she could visit her Poppy with me that day. She’s a registered nurse and I’d told her I wanted her look at his feet. We both gasped when I pulled his pant legs up. “This is bad, Mom.” There were oozing sores, one of them the size of a quarter, scattered across his badly swollen lower legs. The skin was red, scaly. Plus-4 pitting and weeping edema, which I’d never heard of, is what she observed. This hadn’t happened overnight. Obviously Peter wasn’t being assessed or treated and we wanted to know why not.

“He should be wearing compression stockings for the swelling, he should have an ultrasound to rule out heart issues, at the very least he should be on Lasix to reduce swelling, his meds need to be checked, and besides that,” she huffed, “his room is filthy!” She was in full charge nurse mode. I asked her take the lead when we talked to the duty nurse. I softened my daughter’s remarks a bit, adding that I knew Peter was responsible for some of the mess and clutter in his room but still, he was the resident in care and the “care” seemed to be missing.

Thus began what turned into more than three months of working through a scrim of excuses and blame. True, everyone, staff and residents alike, had been affected by Covid, but it was apparent that nursing basics had not been followed.

Dementia took Peter’s voice. I found mine.

Even though I detest confrontation, I went on the attack. My mantra became, my husband is not getting the care that more than 7500 dollars per month should ensure. 

  • I contacted friends who had dealt with a loved one’s dementia-related issues and got their advice. The most pertinent—speak up.
  • I made phone calls and when that didn’t get the results I’d hoped for, I wrote to those who were in position to make changes. 
  • I asked that compression stockings be ordered and when that wasn’t done, thanks to various lame excuses, I bought poor substitutes at CVS. Soon, the preferred brand were ordered.
  • I was told, incorrectly, that if I wanted my husband to see a cardiologist, I had to make the appointment. I got the required referral.
  • When I questioned some of his meds, particularly those to calm his combativeness, I complained about the zombie affect they caused. I suggested my time-tested calming techniques: a cup of tea and his tv tuned to sports. 

There were other issues, but these were most significant and are being dealt with with varying degrees of efficiency.

Roadblocks and excuses every step of the way.

When I was told Covid has changed everything, I agreed. I complimented the good job the staff had done to keep residents safe during the long ordeal. I was sympathetic to their long work hours, short staff and uncertainties both at work and in their personal lives. When I heard, I’m not paid enough to do this, or We don’t have enough staff, I agreed. Easy for me to say, Hire more people, pay them more, offer incentives. 

Peter’s legs are somewhat better, though still swollen. The most worrisome ulcer is healing slowly. He’s finally able to smile and joke a bit. That tells me he really did feel poorly, but couldn’t express himself. Who knows how long the condition had festered before my daughter and I let staff know that we knew something was grievously wrong?

I wish I could write a happy ending to this post, but in reality dementia is inherently unpredictable. And I wish I could say that there have been no further issues for me to deal with, but that isn’t the case. Frustrating senseless problems continue. They seem endemic. 

The laughs that have helped us traverse this long path have been scarce these recent months. I cling to the tiniest chuckles: Peter was coming along the corridor one day when I walked in. He clutched at his trousers in a telltale way, so I headed him to the bathroom. “I don’t need to go in there,” he growled and pulled two small cans of Coke out of his pockets. I shook my head and laughed.  He gave me a knowing look. “Gotcha!,” his smile seemed to say.

Header photo: Clematis hugs our lamp post. The plant symbolizes mental beauty and ingenuity. It climbs trellises and walls, sometimes in incomprehensible ways. Peter has attempted to climb walls too, and just two days ago I caught him stacking chairs in the gazebo! A means of escape? I wouldn’t put it past him.

 

 

 

 

 

 

I’ve run out of ‘fake.’

Posted on by under Caregiver, Childlike, Control, Problems

I’ve been called a “fake it ’til you make it” type and that’s probably accurate. I do try to look on the bright side, to laugh rather than cry. And I am able to get things done while projecting a measure of confidence—usually. Lately, however, I’ve run out of “fake.” After nearly 16 years grappling with my husband’s journey from a “mild dementia” diagnosis to “can’t rule out Alzheimer’s,” I’ve spun out.

My spin has shocked me because life has actually eased in recent months. Peter is more settled and, in fact, he’s turned into an 81-year-old version of a ten-year-old class clown. He flirts, he lays on his English accent, he entertains residents and staff alike with his antics. He’s in as good a place as he can be physically and mentally. He has his favorites amongst the ladies who he looks out for and helps when he can, although the other day I watched him guide a resident into the wrong room. She knew it wasn’t hers, but he insisted. I ended up directing her across the hall to her door.

So why have I fallen apart? I should be less stressed, but I’m not. Have I spread myself too thin?

For one thing, with Peter more comfortable I’ve turned my attention to other problems. Although he gets good care in the best facility around, I have some gripes. For one thing, his not taking his medications is at the top of my list. It is simply not acceptable that he gets away with his shenanigans to avoid taking them. Again, when I walked in Friday afternoon, his three morning pills were lying on the table in plain few!

I’ve complained about other issues and they’ve been acted upon. That’s good. So now I’m considering ways to get the large raised flower bed dug over so residents—particularly the men who crave more activity—could plant flowers and more vegetables than they are able to grow in the one small raised plot. Then too, the gazebo should be spruced up — Peter decided the other day that the ceiling should be painted a beautiful sky blue — and the outdoor furniture should be replaced. How nice it would be to have a table and chairs in the gazebo where residents could sit, have a snack, play a game. Where we could have a cup of tea without balancing it on our knees. Is that too much to ask for the amount we pay for monthly care?

I don’t think so, but at the moment I’m stalled, burned out, stuck. To aid the burn-out, I’ve been advised to stop visiting him so often, usually four to five days a week. It is wearing and since he never remembers I’ve been there, I should allow myself to take days off. That’s tough. I want to visit because sometimes, sometimes, there’s a glimmer of the man I married, and I always get a hug before I leave. I always hope that somehow—osmosis?—my visits will have made his day better.

How many times over these years have I been told that the caregiver needs to take care of herself? Well, I admit to being stuck between a rock and a hard place lately, but I’ve taken steps. I’m learning to compartmentalize, I’m exploring mindfulness, I’m breathing deeply to meditative music, I continue my every other week massages, and I continue to look for laughs every day. So far I haven’t stilled my spinning brain by much, but I’m a work in progress.

Tiny flowers thrive in crevices in long-abandoned Inishmurray, County Donegal, Ireland, 2009

Header photo: Guillemots cling to tiny ledge on Cliffs of Moher, County Clare, Ireland, 2009.

2016 National Society of Newspaper Columnists’ contest finalist. 

Sneaky Pete can be a real pill!

Posted on by under Advice, Alzheimer's, Caregiver, Childlike, Control, Experts say, Help sought, Problems

Oh he’s sneaky, my husband. I know it, our family knows it, his companions know it, the nurses know it. Sneaky Pete. Sometimes it’s funny, other times not so much. Sometimes his sneakiness has the potential to cause real problems.

A couple weeks ago an innocent mistake triggered his wrath. He was really, really angry. Combative. Luckily a nurse was able to intervene and calm him. My husband has so seldom been truly angry that I could count the times on one hand. This was so not him.

I heard about this after the fact.

At the same time I learned he’d been refusing to take his meds again. This had happened now and then for some time, but as far as I knew the problem had been solved long since. Oh, he appears to take the pills but he pockets them, or tucks them under his tongue or inside his cheek, or simply lays them down somewhere. It is likely that not taking his Wellbutrin for several previous days contributed to his rage.

Residents in memory care units often refuse their meds for fear of being “poisoned.” Or because they’re to hard swallow. One common practice is to put crushed pills in applesauce, or ice cream, Reese’s cups, drinks, pudding, peanut butter, Jello.  Those don’t work with Peter, but one nurse who never has a problem with him, puts his evening pills in his doctor-prescribed after dinner Guinness. Works a treat.

Thing is, he likes to tease and he loves the attention he gets when one of the staff realizes he’s tricked them. For all the time I was his caregiver at home, I dealt with his refusal to take pills by donning my “Mother Tough” persona, my left eyebrow on alert. I’d stand beside him and, to make sure he swallowed them, I’d tell him to hold both hands out palms up, then pull his pockets inside out, and finally open his mouth. I wasn’t bound by HIPAA rules that say a patient can’t be forced to take medications if he/she doesn’t want to. Medical personnel cannot force meds on a patient. If the patient says no, that’s it.

That’s just wrong. If refusing a medication were to cause the patient to become markedly worse—or perhaps cause their death—wouldn’t that be a lawsuit waiting to happen?

This morning I popped in for a quick visit between an appointment and several errands. Involved story, but when Peter searched his pockets  he “found” his morning pills. A helper and I noticed at the same time. “Peter,” we yelped in unison, “you’re supposed to take those pills, not carry them around!”

His silly “who me?” face said he’d achieved his goal. He’d been noticed. He protested all the way through the building to his room and, no, I didn’t drag him by the ear, but I wanted to. In no uncertain terms I told him to put the pills in his mouth and drink them down with the cup of water I handed him. He complained and said they tasted awful. “You’re not supposed to chew them!” I said. “Of course they taste awful. Take a big drink and swallow them.”

I know, I know, I should’ve handled it better. But, doggone it, he doesn’t remember why he’s in memory care nor why he must take various medications, but he does remember how to get a rise out of me and anyone else who tries to help him.

It really isn’t a laughing matter.

Header photo: Jersey Urology.com

2016 National Society of Newspaper Columnists’ contest finalist. 

Always laugh when you can.

Posted on by under Alzheimer's, Control, Defined, Dementia, Laughter, tears, Thankful

Thunder woke me this morning. A grim start to an anniversary, although this isn’t an anniversary to celebrate, no. A year ago today I had Peter admitted to memory care. Although he hasn’t been able to remember the day, the month or the year for a long time, I think, if he could remember April 18, 2018 and if he could express himself, he would say it was the worst day of his life.

I do remember and I shudder, but I don’t dwell there.  That’s both good and bad, I suppose.

I’m glad to say that Peter is doing well, better than most, I think. The problems he had those final months at home—falling, getting lost, increasing confusion, hallucinations, anger— are gone. But cured? Of course not. Living apart from the heightened tension and stress at home as I tried to cope with our situation helped both of us enormously.

Settled in now, the staff and residents love him and his silly pranks and goofiness. At last week’s Prom Peter was, as he always has been, the life of the party.  He thanks me and hugs me the way he used to do every time I visit.

My husband’s single-minded determination to problem-solve and his innate sense of humor have carried him through these very rough twelve months. It’s as if he grits his teeth mentally and reckons with how his life is now. He rarely asks when he can go home, but when he does I redirect as best I can, then watch as he turns inside himself, furrows his brow and deals with the knowledge.  After a couple minutes he shakes his head, smiles sadly, and says, “Oh well.” And that’s it. He’s dealt with it.

Peter thrives in care as much as anyone who has a dementia can thrive. Perhaps he thrives too much! His entire adult life he weighed 145 pounds. He loved to boast he could still wear clothes he had when he was twenty. He’s now a fraction under 150 and he’s popped the buttons on his trousers and shirts!  My formerly skinny husband has love handles!

Over the past year I’ve posted about the tough times, and there were lots, but if I were to count, I think there were more light-hearted posts than not. I want to believe that.

Neither of us would have gotten through the year so well without laughter. If laughs were available in a pill, they might be a cure for dementia. 

[Elaine Eshbaugh, PhD, Associate Professor of Family Services & Gerontology at the University of Northern Iowa, writes a hugely helpful blog. Her April 15, 2019 post, “What I think caregivers… need to know…”, was exactly what I needed to read this week. Do follow her!]

Header photo: This dogwood lightened my mood as I walked Nobby this morning after the rain.

2016 National Society of Newspaper Columnists’ contest finalist. 

The door doesn’t buzz for me.

Posted on by under Caregiver, Control, Help sought, Lost, Problems

This wasn’t a stick-of-butter-in-July-sun meltdown. No, it was more like a snowman-in-shade-at-34°F.  It had been lurking for several weeks. Things, little things, had begun to pile up when another snag with our long term insurance company turned me into a weepy, hand-wringing mess.

I don’t cry easily or often, but that day my eyes flooded as I stried to decipher the latest problem. As far as trying to deal with this particular issue, I’d bottomed out. I was doubly upset because I knew had to ask for help. For most people, I think, it is difficult to seek help from family or from anyone else for that matter, or even admit to needing it.

Leslie,  Martin and I were at their river place for the weekend. Les knew something was up and asked several times Friday evening if I wanted to talk. I stalled. “Nope, not yet, not now, not this evening, maybe tomorrow,” I said. But it was Sunday morning before I found my voice. I’d planned to leave by early afternoon to visit Peter, so if I were going to talk, it had to be then. “I’ve lost myself” I think I said, or maybe, more accurately, “I’m lost.”

“You. Are. Not. Getting. Alzheimer’s, Mom. You. Are. Fine.” Leslie reacted as she always does when I joke that I’ll probably have to move in with Peter soon.

“No-o, I know,” I said. “I am forgetful and addled a lot of the time these days, but this has been a really terrible year. The stress has finally gotten to me.”

“It has been terrible,” she agreed. And I thought, awful not just for me trying to bear up, or for Peter trying to understand, but for the rest of the family too, especially Leslie and Carolynn. They’re being brave for me. And strong.

I cringe when friends say how well I handle our situation, because a lot of the time I’m coming unwound. As always, utter panic grips me when I’m faced with bills to pay, numbers to compute, or when anything to do with financial matters smacks me upside the head. I’ve always fallen back on the excuse that I don’t do numbers. I do words.

I have no need to fret, but still I do. Luckily, we have good long term care insurance coverage, but unluckily, the company has penalized me for their own ineptitude more months than not for the seven years I’ve filed claims. Last summer, to deal with worsening, inexcusable treatment, I did what I do best: I wrote a letter and sent it to the company’s CEO. In detail and with exhibits, I described the hurdles I’d had to jump to get reimbursed. That letter got results and a phone call within hours. And within two days the nearly 12 thousand dollars owed were deposited to my account. For nearly six months there were no further hassles. Then it started again, and with other niggly things piled on too, the weight of a year’s worth of anguish bore down.

Slowly, but steadily, I began to melt

Leslie rolled her eyes, not at my fragile state, but because I hadn’t mentioned the issues sooner. “Mo-om, this is something I, we, can help you with. You don’t have to do this on your own. You’ve got enough on your plate!” She was right of course.

Well, now that I’ve exposed my distress here, I realize, once again, I shouldn’t not ask for help. Peter is doing as well as can be expected and I am fine as my daughter reminds everytime I buckle, 

When I left Peter yesterday and walked toward the door into the lobby, the alarm didn’t buzz. I punched in the code anyway. Nothing. I tried again then started to laugh at myself. The alarm didn’t go off because I have no ankle band to trigger it. I can just open the door and leave. Hm, not so funny after all.

Header: Snow storm Banff, British Columbia, August 29, 2010.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

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. 

 

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. 

 

 

‘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.