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.

 

 

 

 

 

 

The second worst day of my life so far.

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. 

 

The right eye had it.

As weeks go, last week was awful. Monday our sewer line backed up into the basement. And we had guests. I’m sure they were glad to leave Tuesday.

Things continued downhill — thank me for not sharing details. By Friday, I was knackered. I took Nobby to the vet at three o’clock, and promised myself I would relax afterwards with a cup of tea and the book I’d been trying to finish. Never happened.

Leslie called to ask if we wanted to meet for dinner then go to “My name is Doris.” Yes! Just what I needed. A meal I didn’t have to cook and a few laughs.

I encouraged Peter to take Nobby for a quick walk, while I made myself presentable. But before the leash was fastened, Peter came upstairs covering his right eye with his hand and a handkerchief. “Something in my eye… hurts…geez!”  It was watering and red, but I couldn’t see anything. I suspected he’d scratched his cornea. From experience, I knew how it hurt. A warm water rinse didn’t help, nor did the drops I had on hand. I took him to “speedy” urgent care, and let Leslie know we wouldn’t join them.

Start to finish, we were there more than two hours, the final fifteen minutes of which my husband charmed both nurse and doctor. He was his chatty best, happy to have a new audience.

“Where are you from?” the doctor asked.

Oh, heavens, I begged silently, give her a straight answer. After mulling his usual responses he said, “Hammersmith.” Different from his usual, “Oi’m from London, int-eye?” He added, “‘Burrah’ [borough] of London,”

She laughed. “That’s what I thought.” She told him she’d been to England several times and loved it. “I probably like Scotland even more though,” she added.

“Ooo, caw, they tauk funny up there,” he said.

The nurse took over when the doctor left the room, then we were free to leave. “Cheerio,” the doctor called as we headed down the hall.

Peter embellished his “Cheerio” with a Dick VanDyke double-hop-skip out the door. What could we do but laugh?

Screen Shot 2016-05-02 at 5.25.55 PM
Saturday morning, he had just gotten up when I returned from my walk. His eye was puffy, weepy. “How does it feel this morning?” I asked.

Confusion spread across his face in italics. “How does what feel?”

“Your eye! Don’t you remember how it hurt last evening…we went to the clinic…didn’t have any dinner?” If anything, he’d remember not eating.

“I can’t remember anything, you know that,” he said.

Sometimes, I suppose, there are advantages to having dementia.

Header photo: Peter on our trip to Alaska, 2006

2016 National Society of Newspaper Columnists’ contest finalist. 

Another good thing.


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For years, my husband has had bouts of hiccups that sometimes last for days. And sometimes his hiccups predict when he’s going to have a very bad head cold.

Such was the case a few weeks ago. Violent hiccups started in the evening, and by the next morning he could have starred in a Nyquil commercial — sneezing, coughing, aching — with hiccups thrown in for good measure. This went on day and night for four days. None of the usual “cures” work, not drinking from the opposite side of the glass, holding his breath, a scare, nor a spoonful of sugar.

Occasionally the hiccups stopped and I’d hope they’d ended. But I didn’t want to say anything lest I jinx him. “Doesn’t your chest hurt?” I asked midway through the ordeal.

“No, why?”

“I just think hiccuping so often would make your chest hurt.”Screen shot 2014-11-05 at 10.37.59 AM

“Hiccups? I don’t have hiccups!” he growled.

I shut up because, in that case, not remembering was a good thing. Never mind that in an hour they’d start again.

Stop.

 Start.

STOP!

The following week he didn’t remember the horrible cold nor the hiccups, and if his chest ever ached, he didn’t remember that either.

Sometimes, not remembering is a good thing, right?

Check … imagesor  not check? Screen shot 2014-11-05 at 5.27.36 PM

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

 

One good thing.

In my husband’s case, his continuing sense of humor makes a horrible disease tolerable for both of us. Plus, I’ve discovered there are several things that are “good” about his dementia.

Peter doesn’t know how to describe pain, not even in the moment. Maybe he never did and I’m only now noticing. He can’t say if pain is sharp, dull, throbbing, piercing. He can’t say if it’s a three or a nine on a scale of ten.

Several months ago, he came to me nearly doubled over with pain. His shoulder was scrunched up towards his ear and he was gripping the back of his neck.  “I don’t know what this is, but I need to go to the doctor,” he said, grimacing.

My husband never thinks he needs to see a doctor, and he never complains that he hurts. I calmed both of us down with a cup of tea, and after questioning him, I decided he’d had muscle spasms, not a heart attack. That was a Friday evening.

I watched him over the weekend, and though he winced from time to time, he never said another word. But Monday morning he complained again so I made an appointment to see the doctor.

By the time we arrived, he had no pain and no memory of it. I knew he hadn’t been faking, but I couldn’t believe he didn’t remember. Further, he didn’t know why we were in the doctor’s waiting room! When I asked how he felt, he shook his head dismissively, and shrugged his shoulders. Then he stood and patted himself down — chest, back, arms, legs — and said, “Yep, I ‘feel’ just fine.” His eyes twinkled.

The doctor said arthritic spurs on his upper spine were making the nerves twang like  too-tight banjo strings. He prescribed ointment, pain pills, and physical therapy.

One good thing— check!Screen shot 2014-10-20 at 4.32.19 PM

Header photo: Sweet state in a North Carolina garden.

2016 National Society of Newspaper Columnists’ contest finalist.