Living While Dying: Trailer

"Living While Dying" trailer from Emily von W. Gilbert on Vimeo.

The Unexpected Comfort of Livestreaming Funerals

There were friends who couldn’t travel and family members who lived too far away to make it in time for the service, which, by Jewish tradition, had to happen as soon as possible. But their chapel had a solution: It livestreamed the funeral, and uploaded a recording of the service to its website shortly after, with a hyperlink prominently displayed in the obituary...The videos are not solely for the benefit of remote viewers. Levy and her family found that it proved most useful to those that attended. “One of the things that we were told was: You're not going to remember anything,” she says. “[Everyone is] saying all these wonderful things, they're telling these stories and you can't process it,” the grief and shock is just too much.

In the months since her mother’s January 7 funeral, Levy says she and other family members have watched and rewatched the recording online. “One of the only things that every day reminds you of how great she was in such an awful time is people's memories and you sharing those memories with each other.”

Now Even Funerals are Livestreamed -- and Families are Grateful

Alternate Endings: New HBO Documentary on EOL

Alternate Endings: Six New Ways to Die in America offers a fascinating look at the varied ways Americans are choosing to both find meaning and celebrate life as it comes to an end. With attitudes about death and end-of-life choices rapidly changing, 2018 saw the first time more Americans chose cremation over more expensive, traditional burials, disrupting the $16 billion a year funeral industry. As the baby boomer generation approaches death, more and more are rethinking the way end of life is recognized and are deciding to take control of what will happen when they die.

Trailer

Stories Help Us Make Peace with Our Lives -- And Deaths

How should you live when you know you’re going to die?

It is perhaps the ultimate, eternal question — one we all have to grapple with, but mercifully, don’t have to, until the end is crystallized by our own illness or that of a loved one. Humans may be the only animal capable of grasping mortality, but it’s usually not something on our minds — until it is....

I began to wonder whether the secret to a good death wasn’t looking forward, but peering backward — whether retrospective examination might be more therapeutic than prospective preparation. I thought of how often I’d focused solely on helping patients navigate the future: how many weeks or months of life they might expect, which procedures they should or shouldn’t consider. These discussions, while important, fail to address what research has revealed about the deeper wants and needs of seriously ill patients....

Patients were far more likely to express that it was important to feel that their life was complete, to be at peace with God and to help others in some way.

In other words, to feel that their lives mattered.

A growing body of work suggests that a powerful but underused method of creating this sense of mattering is storytelling — reflecting on the past and creating a narrative of one’s life, what it has meant, who you’ve become and why.

When the future is running out, narrating the past helps to prepare

Family Caregiving is a Political Issue

The women's movement had a slogan: The personal is political. That applies to family caregiving as well.

[T]he cost of hiring a home health aide to take care of a frail parent can add up to $50,000 or more a year. So tens of millions of individual women across the United States wind up providing the care themselves for free, and bearing its cost in the form of stress, lost wages, and lost opportunities to nourish their other needs, and their families’....One might expect that a problem that affects so many people so profoundly would become a major political issue. Recent years have seen other issues, including ones that disproportionately affect women in their personal lives, become highly politically salient—from sexual harassment and pay equity to the push for universal pre-K education and improved access to child care. Yet even though American women today are politically organized and running for office in record numbers, elder care remains widely viewed as a purely personal matter. Even a news junkie, following the 2020 race closely, could have heard nothing about it.

Why is that? And could long-term care go from being a sleeper issue to one that boosts a candidate out of the 2020 pack?

...

That’s not to say that providing universal long-term-care insurance wouldn’t cause sticker shock when it shows up in government budgets. But the fact is that, one way or another, society is already bearing these costs—mostly in the form of care provided by stressed-out, uncompensated women who have the misfortune of having a family member who needs care and can’t afford to pay for it. What we need is a way to distribute that burden more equitably.

“You can divide the world of politicians into two groups,” says Howard Gleckman, a senior fellow at the Tax Policy Center. “It’s not Democrats and Republicans, it’s people who have been caregivers and people who haven’t.”

The (Possibly) Forthcoming Elder-Care Revolution

Help with Designing Your End of Life: A Beginner's Guide to the End

A Beginner's Guide to the End is a new book about how planning the death you want helps you have the life you want for as long as you can.

“There is nothing wrong with you for dying,” palliative care doctor B.J. Miller and Shoshana Berger write in A Beginner’s Guide to the End. “Our ultimate purpose here isn’t so much to help you die as it is to free up as much life as possible until you do.”

Theirs is a clear-eyed and big-hearted action plan for approaching the end of life, written to help readers feel more in control of an experience that so often seems anything but controllable. Their book offers everything from step-by-step instructions for how to do your paperwork and navigate the healthcare system to answers to questions you might be afraid to ask your doctor, like whether or not sex is still okay when you’re sick. You’ll be walked through how to break the news to your employer, whether to share old secrets with your family, how to face friends who might not be as empathetic as you’d hoped, and to how to talk to your children about your will. (Don’t worry: if anyone gets snippy, it’ll likely be their spouses, not them.) There are also lessons for survivors, like how to shut down a loved one’s social media accounts, clean out the house, and write a great eulogy.

An honest, surprising, and detailed-oriented guide to the most universal of all experiences, A Beginner’s Guide to the End is the one book that everyone needs.

Playing Along With My Dad’s Alzheimer’s Confusion

It is so tempting to tell the truth to our loved ones who are struggling with memory loss, even if it seems cruel to tell them sad or scary news over and over. Increasingly, health professionals and family members are meeting dementia patients where they are.

Lisa Romeo writes in Playing Along With My Dad’s Alzheimer’s Confusion:

Deep down I suppose I sensed there was no value in explaining to him that this was not a hotel, especially because hotels, after all, were places that had always meant refuge and pleasure; places he’d felt comfortable. Hotels were where he’d always been fit enough to swim and smart enough to play baccarat. They were places of beauty, indulgence, and order. I knew in my heart that it was not my duty to make him understand — as if I could — that this was a hospital, that he was broken and sick, and that the only “activities” here were uncomfortable and undignified. What good would it do, I reasoned, to replace his imagined “lousy hotel” conversation with one that was more realistic?

...

Personally though, to have hope was about finding a moment — many moments as it turned out — when Dad and I could meet each other on mutually comforting, historically familiar ground. Every time he talked about hotels, I remembered all the lovely days we’d spent in suites and lobbies, at poolside or white-tablecloth restaurants, from Vienna to the Virgin Islands. When he talked of booking a flight or hiring a limo, it busted open the shared vault of family history we’d made together wandering the world. If that past world of ours could serve as a salve for him, in the midst of his psychic turmoil and physical pain, I was more than willing to follow.