No laughing matter.

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 agreedI 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.

 

 

 

 

 

 

Leave no stone unturned.

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. 

 

‘Caregiver’ redefined?

The word “caregiver” in the tagline above bothers me because it really isn’t accurate any more. But the title, Dementia isn’t funny, still works because dementia isn’t funny. Not in the least.

The thing is, I’m no longer my husband’s caregiver per se. For the past 18 months, since he moved to a memory facility, there’ve been are nurses and aides, companions and activities personnel doing what I did at home for years. A care giver I’m not, but I do still care.

I’m no longer in charge of trying to get him to take his meds or take a shower, to change his socks, or brush his teeth. No longer do I drag him to get his hair cut, his beard trimmed, no more do I do his laundry. Still, when I visit I often try to get him to put his clothes away properly rather than stuffed in his shoes or under his pillow. To convince him to change into a clean shirt is almost  impossible. He’ll answer “Yes, dear” and continue to ignore me as he always has. I always laugh because I never could change his ingrained stubbornness and I certainly can’t now! On the other hand, the things he likes to do, sweeping for instance, he’ll do willingly, thoroughly. He leaves no leaves unswept, no blade of newly mowed grass on the pavement.

One afternoon we were sitting in the gazebo when, out of the blue, Peter said it needed a coat of paint. I agreed—that gazebo is very shabby looking. I suggested a blue ceiling, a tradition in the South said to scare “haints” away and possibly even mosquitos and wasps too. I decided to find out if painting was even possible. And it is!

The following Sunday we looked at color chips at Lowe’s and picked some blues— Playful Pool and Vintage Aqua were nice. Later I found the color at left on-line: Benjamin Moore’s Ohio Haint Blue. I favor that because, well, I grew up in Ohio. Both sets of grandparents had blue porch ceilings and none of them had ever been further south than Columbus.

The gazebo hasn’t been painted yet, but I’m confident it will be. In fact, I have it on good authority that the ceilings of the porches will also be painted “haint” blue. I’m lobbying to have the garden benches painted a matching color, and maybe find floral chair cushions shades of blue for the porch furniture.

Meanwhile, I haven’t thought of a new word to replace “caregiver” in the tagline. Peter would probably suggest “the wife”: The wife, Judith Clarke, looks for laughs every day.  He’d laugh himself silly at his joke, knowing I would not!

Haint (haunt) ain’t in my dictionary, but hain’t is.
The latter, a contraction of ain’t and have not. 

Header photo: Peter loves to sweep the porch near his room. Soon there will  be a haint blue ceiling above his head.

 

 

 

2016 National Society of Newspaper Columnists’ contest finalist. 

Sneaky Pete can be a real pill!

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. 

Two points for a pair.

Sir John Suckling invented cribbage in early 1600s England. The game, still popular in pubs, is played with one deck of cards, a cribbage board and colored pegs with which to keep score.

Cribbage is somewhat complicated, but even more than the game itself, the odd terms and conventions confuse beginners. This isn’t surprising considering that the country of origin gives its villages such whimsical names as Pucklechurch, Nether Wallop and Great Snoring. Cribbage terms—his Nob, box, the crib, right Jack and Muggins—confuse as well.  A Muggins, for example, is called when a player doesn’t calculate her score correctly— the difference in points is awarded to the opponent. Good thing for me we’ve never followed that rule.

Peter and I used to play a lot of cribbage. He teased relentlessly when I forgot whose turn it was to play after a “go” or whose turn to cut the cards or, for that matter, even to remember when to cut the cards. In my never ending attempt to keep him engaged now, I wondered if he would try to play again. He surprised me.

Without going further into the myriad details and quirks of the game—this isn’t meant to instruct after all—I’ll just say that Peter plays way better than I thought he would. He remembers to offer the dealer, me, a chance cut the deck and to cut for the “turn-up,” while I remember which direction to peg. He never remembers which color is his and often—on purpose I’m sure—moves my red peg ahead if he and his blue peg are behind.

At first he didn’t seem to remember that a hand with four ten-count cards, a five, and a five turned up was an “even ‘doz,” his words for 12 points. But when I used the phrase I saw the tiniest spark in his eyes that said, oh-h, yeseven ‘doz

Mickey M  kibitzes.

When I forget to add extra points for a hand that is all the same suit (four) or that also matches the turn up suit (five) Peter reminds me with a sly look. I never have been able to remember that when “his Nob” is turned up the dealer gets two points.

He’s remembered the custom to knock sharply on the table to signal either that he can’t play or doesn’t want to cut. Another niggly convention I seldom recall.

It has worked out that whenever we play one of us remembers what the other forgets. Peg two points for the pair we are!

One day I suggested we play Rummy for a change. Nearly every hand, Peter forgot he needed to lay down at least a run of three or three of a kind. It confuses him when I remind him that he can draw from the discard pile if he wants a certain card and is able to play it with something in his hand. I’d just discarded a queen when he asked, “Can I pick that Queen up?”

“Yes, but you have to play her with at least two other Queens, or the King and Jack of hearts.”

He studied his hand then, with a flourish, spread four Queens and three tens across the table.  “OUT!” he said.

I sputtered. “You fooled me again, you cheeky bugger.”

He loves to make me laugh and I love that he still tries.

Header: Peter and Nobby are featured on cards we use.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

The door doesn’t buzz for me.

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.