Category Archives: Problems

Leave no stone unturned.

Posted on by under eye of beholder, Help sought, Problems

When you look at a the header photo above  do you see despair? Frustration? Pain? Boredom?

Nope, what you see is my husband sound asleep during what was supposed to be our regular half-hour Wednesday afternoon FaceTime chat. He simply could not keep his eyes open nor say anything that day. When I threatened to sing he managed a weak smile. I prodded him virtually, but he didn’t stir. Short of being able to poke him in the ribs, I could do nothing at all.

The longer I watched, iPad propped in front of me, the more upset I became. This was not normal. He was sleeping so soundly that when his head dropped to the tabletop, he didn’t even startle. I used the time to do what I do when things need sorting: write. I sent an email to the staff person who had alerted me to Peter’s unruly behavior more than a month earlier. At the time, she’d told me he’d been prescribed something to calm his rages. Was he overmedicated perhaps?

“I am…FaceTiming with Peter right now,” I wrote. “He is dead asleep again as he has been most times I’ve attempted to talk to him in recent weeks. Is this a result of the calming med he’s been on for some time…? If so, [it seems] more a chemical restraint….[I hate] seeing him this way.”

Later I learned that Peter had indeed been up all night. Was he sleeping in the daytime because he’d been wake all night, or because he’d been given more medication thanks to a middle-of-night tear? I didn’t get an answer then, but recently I did. Yes, he’s still taking the med to calm his outbursts, but worse, a new one has been added, not to modify behavior, rather because of his alarming A1C level.

My husband, who always boasted that his weight had been a steady 10.4 stone in English-speak (145 pounds) since he was 18, has ballooned to 11.6 stone (155 pounds). He has a pot belly now, I’m told. The plan is to monitor his blood glucose daily, assuming he’ll cooperate. He’s never at his best first thing in the morning so I do not see him putting up with a jab before he’s had his coffee.

The good news is that his escalating A1C was discovered and is being treated—left untreated, eye, heart or kidney disease could occur. The bad news is the new med can cause increased appetite. 

The nights Peter is awake, he eats whatever he can find. Snacks are available but they aren’t ideal for a diabetic: pudding, Jello, chips for instance. Because he’s always hungry—hunger born of boredom, I think—the dietician has started fixing him a heavier snack late in the day. She is to call me so that between the two of us we can come up with a plan. For a start, since he’s the only resident up in the wee hours, why are snacks even available! He’d likely welcome a cup of tea. Yesterday I delivered new trousers to replace the ones he’d quite literally, busted out of. I put a package of his favorite tea in the parcel. Once I might’ve put in a packet of cookies, but no more.

Since last March he’s been “locked in and locked down” like the rest of us in this pandemic restricted world, unable to walk outside with me or a caregiver or get any exercise at all. It’s no wonder my formerly skinny husband has packed on 0.71 stone?

When we FaceTimed this week it was against the background of a visiting musician playing his guitar and singing old favorites—”On the road again,” “Don’t sit under the apple tree,” “You are my sunshine.” We sang along and chuckled at our feeble efforts to remember the lyrics. 

 

Laughs aren’t always funny.

Posted on by under Childlike, Dementia, Laughs lost, Laughter, tears, Problems, Remember, tears

Writing in the time of Covid has been tough. My mind is as scattered as the wintery mix that bounced on my windowsill all day. It has been so long since I posted here that I struggled to remember how to sign on!

The past several weeks were fraught. Calls from the facility where Peter lives rattled me. He’s become disruptive, combative, with staff and residents alike. This is not the man I married 39 years ago. No, this is a man who has lost his links to the outside world as have so many others imprisoned by both the Covid pandemic and the effects of dementia.

Prior to the March shutdown, Peter’s companion Mark took him for outings several times a week. I visited at least four afternoons. We’d play dominoes, watch sports on t.v. or walk outside. Sometimes we’d go for a drive or an easy hike and we celebrated holidays and birthdays with Leslie and Martin. Not so this year.

Is it any wonder Peter has not been the eccentric funnyman he was when he was admitted more than two years ago? He’s fed up with being locked in. Bored. All along I’ve told him about the pandemic and tried to explain why he’s even more confined than previously. He doesn’t remember what I’ve said. Well, that’s the problem, isn’t it? Remembering.

I had to laugh when I learned my husband had sneaked into a resident’s room and tried to put her clothes on. I laughed when I heard that he removed the laces from his shoes and tied them around his ankles for some reason. Not so funny is that he’d taken he laces out of other residents’ shoes. And not funny at all are other offenses that are totally out of character for my toe-the-line, proper English husband.

Combativeness is also unlike him. I’ve read that some dementia patients possess shocking physical strength. Peter is one of them. As a result he’s been prescribed a medication to calm him. It makes him so dopey—stoned, my daughters say—that he can barely talk. I realize his behavior could harm someone, but I wrote a letter to suggest alternative ways to redirect him. A cup of tea, favorite jazz on his “radio,” English football on his t.v.

Now it could be that during these nearly ten months since March that Peter has moved further along the dementia continuum, or it could be that the long isolation has had the debilitating effect that so many elderly residents suffer.

At last though, vaccinations for nursing home residents will begin soon in our area. With that, face-to-face visits might be permitted before too much longer. Maybe the “old” Peter will materialize, at least for a while, and we’ll be able to share genuine laughs once more.

Header photo: During a recent FaceTime chat, Peter wore a hat that he probably “borrowed” from someone’s closet.

A man and his dog.

Posted on by under Childlike, Good news, Problems, Sickness & Health

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

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

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

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

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

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

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

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

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

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

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

Peter the ghost.

Always a trickster.

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

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

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

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

Header photo: Nobby looks good in blue.

 

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

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. 

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. 

 

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

‘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. 

 

 

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. 

 

 

The second worst day of my life so far.

Posted on by under Alzheimer's, Caregiver, Childlike, Control, Problems, Sickness & Health

A policeman stood at the door.”Afternoon, ma’m,” he said. “Does your husband walk a big white dog?” I nodded. “He’s had a fall. An ambulance is on the way.” I grabbed the door to hold myself up and he added quickly, “He’s all right, but they’ll take him to the hospital as a precaution.”

“Come in and lock the door behind you!” I yelled, while I ran to turn the stove off, grab my purse, and dash out the side door. “Your dog is OK, too,” he said as he followed me through the house. “He’s right beside your husband. Another policeman will bring him home.”

Peter had fallen — face-planted — into a shallow ditch less than a block from our house. It had rained all day, the ditch was running. I’d fastened his GPS watch around his wrist before he and Nobby left.  Minutes later, I saw that he’d taken the watch off, defying me as he does, and left it the kitchen. If a passer-by hadn’t seen him and called 911 I would have had no way to find him when he didn’t return. It could have been worse.

But “worse” was yet to come.

A second policeman — the same one, incidentally, who helped find Peter last summer when he got lost — took me to the ambulance. He was already on the gurney when I climbed in behind him. He turned his battered, muddy face toward me and said, “Uh oh, now I’m in trouble.” The EMTs laughed. He kept them entertained all the way to the hospital.

In the ER he kept up his joking to the amusement of the various people attending to him.  When two young female aides left the room, one said, “Oh, he’s so cute!”

Mm.

His right hand suffered the worst physical damage — a wide, deep gash required stitches to hold his tissue-like skin together. Numerous other bumps and abrasions punctuated his upper body and knees, including a goose egg and black eye that bloomed later. As I gathered up his bloodied, muddied clothes he said, “S’OK, those will come clean.” Nuh unh, I thought. Not enough Oxy-Clean in the world to get that out.

Peter’s hands and face had been cleaned up by the time the ER doc returned to stitch his hand. “Oh, you’re quite handsome under all that dirt,” she said.

He grinned. “I’ll have to do it again then.”

Turns out, those few hours in the ER were the easiest of the next two weeks. He was understandably confused that Sunday evening, but the next day he awoke a different person. In the next few days he aged ten years.

From the start he remembered nothing about his fall, not that he would, and his few previous memories were erased too. He insisted all along that he didn’t hurt anywhere, though he must have, but his gait was stiff, and he shuffled as if he’d suddenly developed Parkinson’s. He struggled mightily to get out of his chair, even with a cane. He refused my help angrily, viciously, so unlike the man I married. He became argumentative and unreasonable in ways that he’s never been. He had no appetite, strange for him, and he slept soundly twelve or more hours a night. “I’ve nothing else to do,” he said. The Olympics’ coverage saved us.

Help dressing or undressing? “NO, I don’t need you.” Yet it took him twenty minutes to pull one sock off, and forty minutes, with my unwanted assistance, to get up the stairs to bed.

A physical therapist will assess him soon, there’ll be additional lab work to rule out other issues — the urine-analysis showed no UTI so the “hope” that spurred is gone. I may hire additional help, or may go to a nursing home solution. In the meantime, our sons-in-law have made the downstairs more accessible. Moving a bed down is a possibility.

Peter went from being a whisker shy of his eightieth birthday 18 days ago, to looking and acting as if he were ninety.

Still, not all news is bad news. Between the time of my previous post and now, he turned a corner. His dogged determination and bloody stubbornness, that usually makes me tear my hair, has instead helped him rally. He’s not back to where he was before, and never will be, but he’s so much better. But then, anything would be an improvement from the blood, rain and mud drenched man the ambulance crew hauled out of that ditch on February 11.

Header photo: In the ambulance, Peter regaled the EMTs with his patter . From the back, he looks unscathed.

2016 National Society of Newspaper Columnists’ contest finalist.