Isolation is a Soul-Killer

WHAT WE (HOPEFULLY) LEARNED FROM THE PANDEMIC

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My sister Helen was a hidden covid victim.

Helen, who died recently at 95, never actually caught the virus until it was in decline; being fully vaccinated and well cared for, she had only a very mild case — and recovered. But like uncounted millions of seniors — and more than a few younger people — she was a victim of the pandemic.

Isolation kills.

Helen was a social creature. Her retirement community ran a weekly bus to the grocery store, but that didn’t work for Helen. The bus returned in an hour, by which time she had only begun her visits with the produce guy and the butcher, the shelf-stockers and the check-out lady. Her son-in-law drove her to the store and worked on his laptop until she finished.

“We’re not supposed to walk in the halls,” Helen reported during the worst of times. We had cross-country phone visits several times a week, but I was seldom able to cheer her up.

“This isn’t living,” she would say.

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Living is interacting with fellow creatures. Even the four-legged kind. According to the American Society for the Prevention of Cruelty to Animals (ASPCA,) more than 23 million Americans adopted a pet during the pandemic; most of them are still with their newfound families. Depression among the elderly, though, even those with pets, was rampant.

One 80-something friend’s depression became so grave that her children — all of whom lived in other states — insisted she videoconference with her physician. He prescribed medication, but it was only minimally successful. “I’ve just lost any will to live I had,” she told me over the phone. “I’m not suicidal, but I go to sleep every night hoping not to wake up. We have no idea how long this lockdown is going to last.” Happily, she outlasted the pandemic and is shopping and lunching with friends (while staying on her meds). That puts her among the lucky ones.

Photo by Harli Marten on Unsplash

For the frail, sick, or elderly, the pandemic was particularly punishing. Already suffering, additional isolation only made everything worse. Some, though, came up with creative solutions:

Two casual friends in a San Francisco retirement community had apartment doors across the hall from each other. They formed the habit of opening their doors and visiting once or twice a day during the lockdown. It brightened their days so much that they circulated a note throughout the building suggesting others do the same. There’s no data on how that worked out, but one of the original door-to-door visitors told me she knew of at least four others who picked up on the idea.

In an assisted living building, residents on several floors had music sessions, wherein they would open their doors, keep their masks on and sing. “Anybody could start something,” one reported; “the rest of us would join in. It was pretty awful, but we had a ball.”

On one urban block, a young man sat on his front steps during the lockdown and played jazz on his saxophone at 10 in the morning. Doors and windows opened; strangers waved.

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Some of us simply walked. I walked for miles, daily as soon as total lockdown ended, across my beloved city. We nodded at each other; masked strangers passing on the strangely quiet streets. I never failed to be uplifted, just by our shared humanity.

We will have another pandemic. Hopefully not any time soon, but it will come. Maybe, along with the ongoing research into developing vaccines and protocols and financial solutions, we can address this existential reality:

People need people.

The Glory of Modern Dentistry

Or – How in the world am I going to pay for all this gadgetry?

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Dentists, my oral surgeon told me almost as an aside — he’s sticking needles in my jaws, and I’m supposed to feel sympathy? — have the highest suicide rate of any profession. I reflected on this, having nothing better to do at the moment.

After Googling around when I got home I learned that MDs are at greatest risk, but the DDS folks are close behind. This is not research, it’s only Googling, but here we are.

Back to my oral surgeon. I am spending a lot of time with oral surgeons, and oral everything elses, having reached the advanced age at which all that expensive stuff — crowns, implants, you name it — done 25 years ago wants to be redone. Regardless of how loudly I argue that I don’t need another 25 years — could they patch me up for five or six, maybe? — I find myself captive to the stratospheric talents (and costs) of today’s dentistry.

Rather pricey view from (one of) my dentist’s offices (Author photo)

Please do not get me wrong. I am immensely grateful to the entire profession, and the way they have kept me smiling through the years without looking like a toothless goofball. Eating is nice, too. So dentists and I are longtime besties.

But now I’m worried about their depression levels.

I do not want to get into the suicide business, which is a sad and serious issue never to be written about lightly. So I am only worrying about what might make them so sad.

Money? How can that be? Admittedly all that fancy equipment must cost a fortune — and many of my dentists are in an historic, heavily gilded downtown building on which I feel I pay upkeep. But as they all have other patients besides yours truly, and what I’m spending on this averages out to the choice between two weeks in Paris or fix that tooth — well, nobody’s talking minimum wage here.

It must be staring down throats all day. Have you considered how repulsive the view into your throat really is? I thought not. Or it could be the fear that, at any moment, an enraged patient might chomp down and amputate your gloved finger? That would definitely increase workplace anxiety.

Self portrait with (happily only temporarily) purple jaws (Author photo)

In the end, however, I have decided to quit worrying about my dentists’ health and wellbeing. They, after all, are not the ones with purple jaws and occasionally absent teeth. Plus, I’m assuming they can afford therapy, given the bills I am paying.

Now, about that bank I’m planning to rob . . .

Losing – But Not Mourning For – My Sister

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Several weeks ago I lost the last of my three older sisters. Condolences are still coming in almost every day via calls and notes and emails. In response I’ve often explained that while I’m feeling extraordinarily sorry for myself — much of my lifelong identity has been as the youngest of four: The Moreland Girls — I do not grieve for my sister Helen.

Helen, I am quick to say, was greatly beloved. By her four children and twelve grandchildren, by a host of friends and other relatives, and very particularly by me. I was her Franciscavichy; she was my Helenchen. Though we’ve been geographically separated for most of our adult lives by thousands of miles, we wrote (yes, old-fashioned notes and letters) and emailed often, and spoke on the phone at least every few weeks. A visit to her western New York retirement community home during the pandemic break of 2021 and again in the fall of 2022 were highlights of those years.

I just don’t mourn for Helen.

The Moreland Girls circa 1940s, bookended by Helen and me (Author photo)

Some years ago, not long after the death of her husband, Helen began to talk about how she didn’t want to “linger.” Her husband had lingered.

When he was diagnosed with Parkinson’s in his late 60s they called to say they were going out to celebrate. He had suspected dementia, she’d thought he might have a brain tumor, and they both believed Parkinson’s a far better affliction.

His physician had said my brother-in-law could expect to have “10 good years,” and they said with one voice, “We’ll take it!”

What nobody talked with them about was how many bad years he would have, and how bad they would get. My brilliant, witty, gregarious brother-in-law had spent his life in academia but spent his last years in hell, slowly losing his mobility, his speech and eventually all physical or cognitive function.

I knew exactly what Helen meant when she spoke of not wanting to linger.

More recently she took to saying things like, “This isn’t living.” Life, for her as well as for the two of them during their long and eventful marriage, meant going to dinners and lectures and events with other bright minds, singing in the Boston community chorus they founded, attending concerts and operas and plays.

I often quipped with Helen that she might consider taking up prayer — she was a determined atheist — so she could pray when she went to bed that she wouldn’t wake up. Instead, she simply wished it.

Photo by Sunguk Kim on Unsplash

Once, after feeling bad all day, she was so certain of this likely happenstance that she left a long message on my answering machine about what a wonderful little sister I’d always been; she wanted to let me know that in case she didn’t wake up. (A lovely message to have now forever.)

Over decades of working as a volunteer with hospice, an AIDS support group in the 1990s and currently End of Life Choices CA, I’ve seen some tragically bad deaths, and more than a few you’d call Good Deaths: peacefully in one’s own bed, surrounded by loved ones.

Helen finally got the good death she wished for. Her physician daughter came over to rub her back when she went to bed, after a day of feeling generally low. The next day she didn’t wake up.

Helen was 95. We should all sign up for this: resting in peace like my Helenchen.

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FOR SOME EXCELLENT HELP WITH MAKING YOUR OWN END-OF-LIFE WISHES KNOWN, SEE THE RESOURCES TAB AT WWW.END0FLIFECHOICESCA.ORG (EVEN IF YOU DON’T LIVE IN CA!)

Parting Words from a Too-Short Life

Ronald Lockett, “Fever Within” (1995) — Author Photo

Artist Ronald Lockett died at the age of 33. I’d never heard of him, or seen any of his work, before happening upon this piece at San Francisco’s de Young Museum. It’s made of found tin, colored pencils and nails on wood, and according to the accompanying text probably depicts a female partner from whom, sadly, he is likely to have contracted AIDS. It’s an arresting piece. “The cross-like composition,” reads the text, “suggests both a window frame — and the sensation of being trapped inside or outside — and the potential of spiritual salvation.”

What caught this viewer even more were some thoughts that Lockett expressed about his own mortality, shortly before he died.

“If it would end today or tomorrow,” he said, “I just try to do the best I can do, keeping my art honest and coming from my heart. It’s like the last few minutes of a basketball game when the clock is ticking and you’ve got to shoot, you just want to nail it like. It means so much to show ’em you can do it.”

Thanks for nailing it, literally, figuratively and emotionally, Ronald Lockett.

Here’s to Hospice – But Not For-Profit Please

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Hospice care: comfort, support, peace. And part of the Medicare benefit.

For years I have preached – to anyone listening, and not many people listen to my preaching – that hospice care is the best and most under-utilized piece of the entire American healthcare system. And I have urged every terminally ill person ever encountered to go on hospice sooner rather than later. The benefits include not just access to nurses and other medical professionals but equipment like hospital beds that make life (and death) easier on everyone.

Hospice got very personal to me when my husband was dying of congestive heart failure. We missed my #1 lecture about invoking the service early because it took him only a few days to go from living fairly comfortably with the disease – as he did for many years – to end stage and a quick death. We should all sign up for this. Still, the hospice bed was a godsend, as was the liquid morphine that I was dispensing as if it were root beer float.   

Hospice and I go way back. In the early 1980s, having always volunteered with arts or educational organizations, I wanted to try something new. Hanging out with really sick people? Being around someone who’s dying? That seemed utterly impossible to me. So I decided to give it a try, and signed up to train as a hospice volunteer. It was, of course, the most rewarding thing I’d ever done. Since then I have worked with (and written about) AIDS support groups (in the 1990s) and assorted end-of-life nonprofits up to and including today serving as a volunteer and board member for End of Life Choices CA.

Two things I have learned and absolutely swear: hospice care is the best, and IT SHOULD NOT BE FOR PROFIT. If you’re a for-profit business in the hospice business where is your profit coming from? Duh. People. Sick and dying people, vulnerable people, the people least likely to stand up for themselves against your money-making.

OK, there are for-profit hospices that are just fine. I put that in quickly, since I have many, many friends who work with for-profits and they will have my head if they read this and think I’m implying every for-profit hospice is intrinsically evil. Not so. But the fact remains: a for-profit business is about profit, and the hospice business is about sick and dying people.

Most recently the for-profit hospice business has been indicted by ProPublica reporter Ava Kofmanin a carefully researched article that appears on the ProPublica site and in the December 5 New YorkerEndgame: How the visionary hospice movement became a for-profit hustle details one major lawsuit over one egregious case but covers the broader topic as it relates to these abuses. Its final line quotes two men discussing the opening of a potential new hospice. Says one to the other: “We can turn a profit and split it.” And that line says it all.

The National Hospice and Palliative Care Organization (NHPCO) and the National Association for Home Care & Hospice (NAHC) were quick to respond to Kofman’s article, saying it focuses on a few bad actors (which is true) and lamenting that it might discourage people from using hospice care (which would be unfortunate but hopefully is not true.) 

“The hospice benefit is popular, well-regarded, and saves taxpayer dollars compared to keeping terminally ill patients in hospitals or other institutional centers of care,” the responding article reads. “NAHC, NHPCO, and our members look forward to working with federal and state policymakers to implement solutions to address the isolated problems highlighted by the article without jeopardizing access to the Medicare hospice benefit.”

One can hope. 

But when I need hospice care – hopefully not any time soon, but hey, dying happens to all of us – I’m still calling a nonprofit organization.


Legacy Gifts: Join a Feel-Good Club!

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The invitation is always open. One of the all-around best societies to belong to, and it can cost a lot less than your golf club. Plus, you’ll never miss the money!

The Legacy Society — or whatever name a nonprofit might choose — is an exclusive club you join simply by naming a chosen charity (or two or three) in your will. Membership doesn’t necessarily get you invited to elegant places, five-course dinners, or fancy balls. What it does get you is the feel-good feeling. Leaving the world better? Priceless.

I go to a lot of ‘legacy society’ events. This is because my good husband was 62 when we married and never had siblings, children, or other survivors-to-be. Since I came with children, grandchildren, and a large, cousin-counting family (all of whom he quickly came to love to varying degrees), it felt right to both of us that everything he’d worked so hard for should eventually go to the causes he believed in. So early on we set up a trust, with his estate divided among a great group of nonprofits.

Wills and trusts make clear what happens to your assets when you die. Full disclosure: this writer has zero legal training. What I know is that a living trust can protect you or a loved one during a lifetime, and distribute all or some of your assets to a cause you believe in after you die. This was something well understood by my good husband. Much of his volunteer work involved helping nonprofits create ‘legacy societies’ that would encourage supporters to name the nonprofit as a beneficiary of their trust. Later on he helped me do the same with nonprofits I support. (https://endoflifechoicesca.org.) You simply let your chosen charity know it’s in your will and you’re in the club. They will also happily guide you through the process of joining.

If you have survivors destined to inherit your estate, what better way to remind them of what was important to you — and teach a lesson from the great beyond about how they can make the world better — than leaving a gift to a nonprofit you believe in?

Living trusts are one good way to get that done. In my own case, the income from my husband’s lifetime of hard work and good investments is helping me live comfortably, although he’s gone to his own well-earned rewards. What this means for the charities we chose is that they have to wait until I’m dead and gone. But for the most part they are being polite about it.

Most nonprofits have someone on staff, or a handy advisor, who can help you make even a small amount of dedicated money make a big difference.

At a recent legacy society event, one advisor talked to us about Mackenzie Scott. If you, like me, haven’t thought much about Mackenzie Scott lately, she’s the mega-billionaire who got that way by helping ex-husband Jeff Bezos create Amazon and get his own quadrillions. After they split, she vowed to give away half of her substantial stash. This continues to be good news to a lot of good causes — partly because she doesn’t tell them how to use it. She might not even insist that her name be plastered over the front door, as do some mega-donors we can quickly name. Leaving those decisions up to whatever your chosen charity needs most — which they generally know best — brings extra gratitude.

You don’t have to have Mackenzie’s money; supporting good causes with any donation today, amid the current challenges of economic craziness and post-pandemic stress, is a great idea. But whether you can pitch in today to help a good cause, you can always arrange for something to be pitched in after you cash it all in.

Feel good today, leave the world better tomorrow.

Two Reviews: Two Fine Books on Life’s End

Anita Hannig’s “The Day I Die” and Amy Bloom’s “In Love”

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(The following appeared first as a blog for End of Life Choices California, an excellent nonprofit on whose board I’m proud to serve. It’s reprinted with pleasure, especially after Hannig told me that our blog resulted in more visits to her website than did her interview with Diane Rehm; I love being mentioned in the same sentence with Diane Rehm.)

Anita Hannig’s The Day I Die: The untold story of assisted dying in America has taken a well-deserved place as the definitive book on Medical Aid in Dying. Want information on how it works? On the history of the assisted dying movement? On the future of legal death with dignity laws? Hannig covers it all, in a book that reads like a personal, informal conversation with the author.

Hannig spoke recently with this reporter about The Day I Die – which is filled with stories of her own experience as a hospice volunteer, and accompanying other volunteers and professionals – and about the work we do at End of Life Choices CA.

“Volunteers are the lifeblood of assisted dying,” Hannig says. “They provide firstline support for families and patients, and it’s hard to overestimate the role they play. In my research, I witnessed how much families and their loved ones leaned on volunteers for their technical expertise but also – and equally importantly – for their human touch and care. In a time of great vulnerability and uncertainty, volunteers help patients navigate the ins and outs of qualifying for the law and accompanying them each step of the way afterward. The emotional labor volunteers put into their work is nothing short of admirable. I have profound respect for their work.”

Hannig, an associate professor of anthropology at Brandeis University, invested five years of study and hands-on involvement in writing The Day I Die. Along the way she accumulated a wealth of stories – poignant, humorous, heart-tugging, enlightening – that she shares in the book.

Looking ahead, Hannig says she wants to be optimistic about the future of the law, “but in the current political (or perhaps judicial) climate I am not sure such optimism is warranted. In the long term, however, I do think that we as a society will gradually move into a direction of granting more rights and freedoms to the dying. My hope is that assisted dying will eventually become legal in all fifty states.”

For now, Hannig says “there are still some misunderstandings about all the different steps someone needs to complete to qualify for assisted dying. Most people think it’s more straightforward than it actually is. Or they wait too long to start the process. Many are still under the impression that there’s a “magic pill,” when in reality the protocol of the medications is quite nuanced and complex. My book talks about the fascinating pharmacology of dying in more detail.”

The Day I Die, in fact, talks about the fascinating work of assisted dying in all its important, often difficult, always rewarding details. It’s a book to read, to keep and to give to those you love. 

*****

Amy Bloom’s In Love is a book for anyone facing Alzheimer’s, anyone who knows someone with Alzheimer’s – or  anyone who’s ever been in love.

It is, despite the somber underlying theme, a love story.

Bloom writes unblinkingly of her husband’s decision to end his life before Alzheimer’s can pull him into years of oblivion, and her own decision to support him in this quest. 

In just the first few pages it’s easy for the reader also to fall in love with Brian Ameche. Bloom writes with warmth and honesty about their love affair, begun while each was committed to someone else and eventually legitimized into a more or less conventional marriage. The handsome Italian architect/ex-Yale football player from a sprawling Catholic family and the celebrated Jewish writer/ teacher/ psychotherapist who share, at least, a dedicated atheism, create a life together bursting with joy. Until his diagnosis.

Brian, who has probably had Alzheimer’s for a few years, finally exhibits enough symptoms – confusion, forgetfulness, erratic behavior – that it can’t be ignored. And he is immediately, defiantly certain that he wants to end his life while he has the wits to do so.

In the U.S., there’s no legal, nonviolent way to accomplish this goal. Even in the 11 states or jurisdictions where Medical Aid in Dying is legal, one has to have a terminal diagnosis and be mentally competent; Alzheimer’s is a disqualifier. 

Ameche and Bloom finally settle on Dignitas, a Swiss nonprofit that helps people with terminal illness – including Alzheimer’s – end their lives peacefully. But Dignitas, in addition to the costs of getting to Zurich, has its own strict regulations: certifications of Ameche’s diagnosis, medical information and proof that he’s not just depressed, time-consuming hoops that must be jumped through. The couple set about making it happen, while keeping their plans from all but a necessary few. Toward the end they accomplish the final details – notes to friends and relatives that will be delivered after Ameche’s death, discussions about his wishes, plans for a few celebratory days in Zurich – which do include a celebratory moment or two – and for a friend to be there to fly home afterward with Bloom.

Bloom skillfully weaves glimpses of their romance and marriage, the good and the bad, into the story of their struggle to meet Dignitas qualifications and complete the journey. It’s a remarkable journey, remarkably well told.

(For anyone addicted to audio books, as this writer increasingly is, this one is a special treat: Bloom reads her own words. It’s as if she were telling the reader the tale.) 

Should the pope open a WordPress blog?

Photo by Ashwin Vaswani on Unsplash

I seldom agree with the good Pope Francis, although we do share a name. (It’s spelled with an ‘i’ for the Franks of the world; Frances is for the Frans & Frannies. This is an educational essay.)

Our disagreements include:

The pontiff would have just about every pregnant woman in the world carry that fetus to term, without a nod toward what else is going on with that woman, her life, her health or her concern for a fetus that’s not viable — all things that seem worth considering before we just ban abortion, period. He and I do read the same Bible, which, by the way, does not mention abortion.

The other cause with which I am deeply involved, the right to control one’s final days when one is near death, is opposed at every turn by Pope Francis and his otherwise perfectly respectable church. Happy side note: In California we have the End of Life Option Act, which was signed into law in 2015 by deeply religious Catholic Gov. Jerry Brown. Gov. Brown opined that he didn’t know if he’d want to make such a choice — using legal Medical Aid in Dying — himself, but didn’t think he had the right to deny others such a choice. And bless his Jesuit heart.

So I follow the goings-on of the aging pontiff with a degree of fellow-Christian skepticism. But here he is, in a recent New York Times, urging compassion for the aged. I would definitely be in agreement with the Vatican on this one; surely we can all get on board for compassion.

As the story evolved, though, the pontiff kept throwing in phrases like “spending time with the old forces people to slow down, turn off their phones and follow a deeper clock;” or “there is a gift in being elderly, understood as abandoning oneself to the care of others.” Full disclosure: I am older than the pope. This is admittedly VERY old, but such is life. Seeing photos of Francis in a wheelchair when I’ve just finished a three-mile walk around the hills of San Francisco evokes a degree of compassion from yours truly.

I just resist giving The Old a blanket bad rap of total decrepitude. Some of us (not me) are still running corporations or making scientific discoveries. Some of us (not me) are still running marathons. Some of us are agitating for reproductive justice, end-of-life choice and world peace — all of which are compassionate endeavors.

Maybe the pope should start a WordPress blog?

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