Category Archives: Aging & dementia

Ten years gone

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The date was marked on my calendar months ago. October 23. It would be the 10th anniversary of my dad’s death. I look at my calendar often, despite the vast empty spaces opened up by Covid-19, and noted the date each time.

Then this week, the day arrived. And quietly passed. And I didn’t note it here, didn’t call special attention to his continued and final absence.

Why not? I’m not sure. Just that when the time came, it was hard to do, so I didn’t. Hard to say goodbye again, hard to believe a decade has gone by, hard to replay moments I wish hadn’t happened, those I wish I could forget, and those that regrettably never were.

The pathos of “Freedom”

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I was struck yesterday by an article in the Charlotte Observer by staff writer Andrew Carter, which described the scene as a small rural racetrack opened and some 4,000 people lined up and crowded in to enjoy an evening of the sound of race cars (“In rural NC, racing fans packed a speedway to defy governor in pursuit of ‘freedom’“).

His attention to detail and almost lyric descriptions really convey the scene, not allowing judgements to cloud the reporting. It’s a textbook example of fine reporting and writing, in my view at least, which frames the sense of “freedom.”

Here’s Carter’s lede:

They lined up more than two hours before the first race Saturday at Ace Speedway, and soon that line stretched 700 feet from the little ticket hut near the front gate all the way to the road. Some of them drank beer while they waited, or smoked cigarettes. They stood close together, without fear of the virus or concern for social distancing.

At the country speedway in the northwest corner of Alamance County, it was as if the coronavirus pandemic was a thing of the past. It was as if the United States wasn’t approaching 100,000 deaths from the virus, and as though much of North Carolina hadn’t been on lockdown just a week or so earlier. It was, amid a global crisis, a scene from life before.

After reading his story, I was awed by this leap of faith by those in attendance. Stupidity? Stoicism? Faith?

Did they realize that one person who had minor symptoms that felt like a common cold might be coming on, or perhaps showed no symptoms at all, could have joined those at the races, becoming the center of a growing cluster as the coronavirus spread from one person to another, then to many of the people either of them came into contact with, eventually affecting dozens, hundreds, in some cases thousands.

From an article this week in Science Magazine.

When 61 people met for a choir practice in a church in Mount Vernon, Washington, on 10 March, everything seemed normal. For 2.5 hours the chorists sang, snacked on cookies and oranges, and sang some more. But one of them had been suffering for 3 days from what felt like a cold—and turned out to be COVID-19. In the following weeks, 53 choir members got sick, three were hospitalized, and two died, according to a 12 May report by the U.S. Centers for Disease Control and Prevention (CDC) that meticulously reconstructed the tragedy.

Many similar “superspreading events” have occurred in the COVID-19 pandemic. A database by Gwenan Knight and colleagues at the London School of Hygiene & Tropical Medicine (LSHTM) lists an outbreak in a dormitory for migrant workers in Singapore linked to almost 800 cases; 80 infections tied to live music venues in Osaka, Japan; and a cluster of 65 cases resulting from Zumba classes in South Korea. Clusters have also occurred aboard ships and at nursing homes, meatpacking plants, ski resorts, churches, restaurants, hospitals, and prisons. Sometimes a single person infects dozens of people, whereas other clusters unfold across several generations of spread, in multiple venues.

The end of the racetrack story won’t be known for several weeks, as we see whether or not it will develop onto a new superspreading event.

But there’s that “freedom” thing. Perhaps that should be capitalized. Freedom.

It brought to mind a little essay I wrote back in 2009 about a visit to my dad in the nursing home where he spent his final couple of years suffering from dementia and other maladies. Freedom, or dreams of freedom lost, was a theme there, too.

I’m reprinting that 2009 piece below. It’s also about Freedom. And it left me feeling the same way. Awed at the power such ideas have for people. And profoundly saddened by the likely results.

Freedom’s echoes: An afternoon visit with my dad
iLind.net September 18, 2009

Another day, another visit.

I stopped yesterday afternoon to visit with my dad after skipping a couple of days. He’s been confined to a Honolulu nursing home since late 2008, suffering from a combination of dementia, Alzheimers, and less serious physical ailments. He will be 96 on December 7. There are good days and bad days. I would count yesterday among the latter.

I arrived at the nursing home just around 4 p.m. and was lucky to find several empty parking spaces in the small parking lot. There’s a routine. Lock the car, stop in the tiny elevator lobby downstairs for a few squirts of hand sanitizer from a dispenser mounted near the elevator, then hit the call button with my elbow, avoiding the still gooey fingers, ride up to the third floor, sign in the facility’s log book at the nurses’ station, check to see if he’s out in the common room, then head down the hall to the room my dad shares with three other men. He’s lucky to have a nice bed next to the window, which gives a little connection to the outside world.

I found him dressed in a t-shirt with a pocket (he insists on a pocket) and shorts, well worn running shoes with elastic laces, shuffling with tiny 6-inch baby steps behind his 4-wheel walker, heading out of his room towards the hall with a nursing assistant hovering at his elbow.

He says hello, but keeps moving, although it’s very slow going, even compared to his normal pace.

“Where are we headed?” I ask.

He gives the answer that I really don’t like to hear: “I’ve got to get downstairs, I’ve got two cars parked on the street and I’ve got to take care of them.”

While we’re moving slowly into the hall, I ask when he last saw the cars.

“I drove one this morning,” he replies quickly, “but I can’t remember where I parked.” Then he tells me that it was a very busy morning in Hana, with a lot of electrical work getting done. The story hung between us as he realized he couldn’t have driven to Hana, which is on the island of Maui, a plane ride away.

“I didn’t have my car there,” he backtracks, recovering some semblance of order.

The cars are an image that haunts him whenever he’s agitated, or perhaps the lingering image of driving off in his car gets him upset when compared to his current restricted routines and causes the agitation. I don’t know.
But if he tries to leave the third floor without being accompanied, alarms ring and the elevators automatically shut down. So they keep a close eye on him.

I distracted him by detouring off into one end of the large common area used for meals and recreational activities, steering him towards a chair at the table closest to the door. There were several picture books on the table, one a photo book about Hawaii, the other a collection of vintage cars. The table was unoccupied.

With a little encouragement, repositioning, and a bit of physical assistance, he abandons the walker and sort of falls into a chair. I pull another chair over to the table and sit down. A staffer brings over a small cup of juice and a spoonful of orange jello, and sets them in front of him. He says he’s not interested, then downs the juice in one go.

On this afternoon, I brought along five or six photos of events in Waikiki, probably all in the 1940s. One shows a group on the beach, diamond head in the background. All are wearing many flower lei. It looks like a winning team of canoe paddlers. It’s the kind of picture which, on a good day, he can tell you a lot about, who, when, why.

Yesterday he looked at it for a long time. Finally he pointed to the man on the far right.

“Rabbit,” he said simply.

I’m assuming he means that it’s a young Rabbit Kekai, one of the well known Waikiki beachboys.

“Whaley,” he said, pointing somewhere in the middle of the group. Ed Whaley was in that same cohort of Waikiki beachboys.
I try asking a follow-up question or two, attempting to dig out more from his memory. No answer. He looks at the picture some more. Nothing else comes.

At this point, another resident is steering his own walker towards our table. It’s the man who sleeps in the bed next to my dad. A curtain separates their beds into different worlds, but they still can’t help seeing each other frequently.

My dad looks up, asks: “Did you lose something?”

He didn’t get an immediate answer, so he repeated, “Did you lose someting?” His roommate was busy doing his own maneuver from walker to chair.

Once seated, the man then looked back, and replied in a loud, clear voice: “Just my freedom!”

My father didn’t understand what he said.

“Your what?”

“My freedom!” Sharp. Emotional. Direct.

The echoes are still ringing in my ears. It was a very heavy moment, weighted down with unstated loss, fading memories, past lives that hang just out of reach like that word on the tip of your tongue that you can’t quite find at a crucial moment.

Luckily, my dad didn’t connect fully to it. But he has his own struggle going on. He wants to find his long-lost cars, but he lacks the freedom to do so. He also lacks the cars, which no longer exist, or a clear memory of what cars he is thinking about, but he doesn’t know that and it wouldn’t matter anyway, since he knows he just drove one that morning.

I tried to squeeze past the moment, again seeking distraction by passing the old Waikiki photo across the table, and the other man takes it, holds in in its fingers, feels the texture, looks at it carefully. Appreciating the moment. He takes it all in, then passes it back. I offer other photos, one at a time, reminding my father in the process that he had already looked at each of them. It works, for now. Freedom is perhaps forgotten, at least in this brief moment.

Soon I have to excuse myself and let myself out of the room, off the floor, out of the building, to our car, waiting where I left it in the parking lot, leaving them there at the table, together with their thoughts.

Guest Post: It’s Really Mother’s Yard

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This post is taken from my late sister’s blog, “Going on Alone.” It was posted on March 10, 2008. My parents were both still living at home. Bonnie, who had become their primary caregiver, captured her life with them perfectly. She could write. I’m sure you will agree.

You have to love 94-year-old women who still tend their own gardens. We’re not talking a few pots and 6’x6′ of grass here. We’re talking close to 10,000 square feet of yard that includes two mango trees (both over 60 years old), a lemon tree, a guava tree, the newly planted guapple that is supposed to be a cross between a guava and an apple, several banana trees (you can’t kill these guys …), a Surinam Cherry (aka Princess Eugenia cherry) bush, and one more papaya tree — all of which bear fruit that gets eaten for breakfast, made into something edible, given away to whomever will take it, or sliced/diced/pureed/juiced and popped into the freezer. Then there’s the look-at stuff: the Bird of Paradise, the 3 dozen or so orchid plants, the Royal Ilima bushes that Daddy hates and periodically cuts down, the Ixoria with its wonderful hemispheres of brilliant flowers that seem to bloom forever but are terribly susceptible to powdery mildew, the brilliantly multicolored crotons and the Lantana, several varieties of ti leaves, ferns and ornamental grasses — and the lawn. This is green garbage week, which means the City will haul away for free all garden waste — with certain limitations. No can or bag can weigh more than 50 lbs. You can’t put in sharp things that could poke out eyes. If it’s not bagged or in a can, it must be bundled. Monday, Tuesday and Wednesday of green garbage week are always garden days. If I can’t find Mother in the kitchen or at her typewriter, I only need look in the bushes that ring the yard. She’ll be in between or behind something that’s two or three times her size, perched on a one-step rubbermaid stool and armed with a large butcher knife, a pruning saw, and a hefty pair of pruning shears. I’ve learned that if she cuts and throws, I can follow around with a garbage can or — when I can get away with it, bags — and bag or bundle, then move everything out to the top of the driveway for pickup. Bags, you see, are only used once and cost $$$. Which, I remind you, they have enough of.

Have I made a difference? Although no one would be caught saying Yes!, I was instructed to call a classifed ad in to the evening newspaper today — the one that gets run free for 7 days. Yard helper wanted, 3-4 hours once or twice monthly. Easy. $10/hr. Kahala. (with telephone number). She recognizes she can’t do it all herself. Daddy wouldn’t even if he could. He figures if the lawn is mowed, the garden work is done. But life is easier with two working, and green garbage is only picked up twice a month. Oh yes. HE hired the yard man. HE will direct the yard man. SHE may not. The yard man will ONLY do lawns. So this second yard helper is a small act of defiance.

As for the bundling — that’s all done with rags. My mother grew up in the country, was in high school and college during the Great Depression. Nothing goes to waste in this house. Every garment — including underwear — gets stripped into more-or-less 1″ strips and used to tie things up. If it’s too small to make useful strips, it gets cut into larger pieces to use for cleaning rags. If a garment still has some life, it gets washed, ironed and sent to Goodwill. Maybe I will suggest she cut strips for rag rugs which I can make next winter!

I give thanks that my mom is still able, at nearly 94, to do this much for herself. I look forward — because looking back does me no good. I keep praying, and hope you will, too.

A reader questions the sharing life’s “final indignities”

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A question left in response to yesterday’s post was brief and to the point:

Ian, how do you go about deciding whether or not to publicize your dad’s final indignities?

It’s a good question. Thought provoking. I’ll try to answer, if I can.

I should say at the front end that I was asked the same thing when I chronicled my dad’s final two years while it was all happening. He had been taken to Queen’s hospital after a second fall at home, and then admitted to a bed in a room with four other patients in the Oahu Care Facility, a nursing home on Beretania Street, near the corner of Artesian St. That was his last stop. He was there just a month short of two years.

At that time, I wrote about my visits to his bedside, his life in the facility, his struggles with dementia, and my own coping with what was happening. I couldn’t avoid writing about family history, sometimes family dynamics, and occsionally about a family secret.

I probably did tread somewhat on his privacy, had he been in a condition to worry about such things. To tell you the truth, my mom probably didn’t know what I was sharing. My dad certainly didn’t. My sister, Bonnie, was supportive, and occasionally wrote on her own blog, a successor to another blog in which she previously detailed her husbands years-long battle with lung cancer.

I wrote primarily for myself, and still do. Witnessing through writing helps process the direct experience. I viewed myself as a chronicler, a reporter, trying to convey the intensity of our shared experience. I really didn’t worry much about privacy, although there were topics I avoided at the time and still sidestep.

And apart from a few questions like this, the feedback I received was uniformly positive and personal. Others who were dealing with aging parents and the scourge of dementia said they appreciated the insights they had gained. I didn’t write for that reason, of course. I wrote as a means of coping with an unfamiliar and painful end-of-life process.

And here’s the thing. Why should the end of life remain an unspoken realm that we enter with parents, loved ones, and ultimately for ourselves, unaided by the experience of others who have gone before?

In an earlier time, when death and dying wasn’t controlled by The medical-industrial complex, people died at home. Families dealt with the details, and such knowledge and the resulting skills were recognized as valuable and passed on to younger generations.

Today it’s much different for most of us. I’m betting that others will receive my sharihg of personal experience, and personal details, in the spirit in which I offer them.

It’s also fair to point out that, at this point, my dad’s gone. My mother is gone. Their siblings are all long gone. His longtinme girlfriend is gone. Their friends are dead. None of them are much worried about keeping the “indignities” of aging secret.

It’s not that I don’t edit myself. But it’s a very light edit, and perhaps uneven and inconsistent. Human, one could say.

Welcome to the mysteries, joys, and pain of this end of life.

And thanks for putting the question out there. Now I’ll have to go back to check how I first answered the question a decade ago.