Saturday, June 16, 2018

Making a Dementia Patient Laugh

Dani Klein Modisett writes in the AARP Bulletin about hiring a comedian to spend time with her mother, who was struggling with memory loss.

I knew there were senior services that provide companionship — programs with names like Visiting Angels, Senior Helpers and Good Company Senior Care. But I wanted something else for my 84-year-old mother. I wanted someone who could make her laugh. I was a professional comedian for years, but when she looks in my eyes, she just sees a daughter she can’t communicate with anymore. I took to social media. “Looking for a funny person with an interest in geriatrics. Paying gig. Part time,” I posted....A comedian. What a perfect fit for this job. Who better to be in the moment, to draw someone out and, after years of dealing with hecklers, be undaunted by the volatility of a person in the grip of Alzheimer’s, a brain disease with no known cure that affects some 5.7 million Americans?

They paused to catch their breath. “You want some water?” Sue asked my mother, holding the glass toward her. She nodded. Sue held it up to her lips. I turned my head, catching a tear with my finger — not so much from sadness, but from one of those Oprah “Aha!” moments. It suddenly became clear that when rational thought, memory and language are gone, the only thing we have is the present moment. And the greatest gift you can give anyone in this state is to do your best to fill the moment with laughter.

We Can Do Better at the End of Life

Dawniel Kupsch writes about her father's last days in the Saturday Evening Post:

This was never how I imagined it when I allowed my mind to wander the path of what would happen when a loved one was terminal — which, let’s admit, is something most of us shy away from in our musings. After reading about others who had gone through this, I always imagined a serene, peaceful process. I anticipated sitting by a bed and holding hands, meaningful final communication, and a chance to say goodbye amid conscientious nurses there for my loved one’s slightest twinge or need.

I know that was unrealistic, but after all I had heard about hospice care, I truly did expect there to be no pain. I expected my father to be spared embarrassment and shame. I did not expect to be so caught up in the minutiae of managing this process largely on my own, and that the caregivers I was able to access would be so overworked and frazzled, unable to invest themselves here in the moment with us. I never thought we would be just one stop on a long list for the day....Though I’m glad Dad is at peace, I’m also left with a lot of anger. I am angry that Dad was never given the option to arrange his own end in a way he would have preferred. For a fiercely independent and iron-willed man, there was no option to take a pill and go to sleep to end the suffering. I am angry that his final days were so agonizing and ugly after he had led such an amazing, beautiful life. And I am filled with grief that so many in this country are left to watch loved ones suffer and die like this — usually for much longer than four days — with inadequate care from an industry staffed by some of the most compassionate, undercompensated, underappreciated, and overworked folks I know.

As Americans, we pride ourselves on our freedoms. It seems to me that we should also have the basic freedom to decide to pass as peacefully as possible when confronted by the fact that there is no hope for recovery. It’s how we “humanely” free our beloved pets from their pain. How can we deny that freedom from our human loved ones — and from ourselves?

Dead Wrong: Let’s End Late-Life Suffering

Thursday, June 14, 2018

The Fight for the Right to Be Cremated by Water | The New Republic

Emily Atkin writes in The New Republic:

In 2016, cremation became the most common method of body disposal in the U.S., overtaking entombment for the first time. This shift is often attributed to the high cost of traditional burial and the waning importance of religion. But experts also point to society’s changing views about how dead bodies should be disposed of. The spectrum of what’s morally acceptable is broadening, at the same time that the most common disposal methods are coming under scrutiny for their environmental impact. More than four million gallons of toxic embalming fluids and 20 million feet of wood are put in the ground in the U.S. every year, while a single cremation emits as much carbon dioxide as a 1,000-mile car trip. Thus, the rise in America of “green burials,” where bodies are wrapped in biodegradable material and not embalmed.

[Samantha] Sieber is a part of this trend, but she doesn’t want a green burial. When she dies, she told me, she wants her body to be dunked in a high-pressure chamber filled with water and lye. That water will be heated to anywhere from 200 to 300 degrees, and in six to twelve hours her flesh, blood, and muscle will dissolve. When the water is drained, all that will remain in the tank are her bones and dental fillings. If her family desires, they can have her remains crushed into ash, to be displayed or buried or scattered. This process is known colloquially as water cremation and scientifically as alkaline hydrolysis, or aquamation.
It’s the most environmentally friendly method of death care, says Sieber, the vice president of research at Bio-Response Solutions. Founded by her father in 2006, the company manufactures aquamation equipment for funeral homes and crematories throughout North America. “This has no emissions, it’s greener, it’s a clean technology to work with,” Sieber said.

But the funeral industry, facing loss of revenue, is fighting to make water cremation illegal.
Sieber’s family launched a lobbying effort to get aquamation legalized in Indiana. And after more than a year and $40,000 spent, Sieber said they had gathered enough votes for a bill to pass. When their aquamation legalization bill came to the floor of the state House of Representatives, however, it was derailed by a gruesome speech by a lawmaker who also happened to be a casket-maker.

The Fight for the Right to Be Cremated by Water | The New Republic

Sunday, June 10, 2018

Live like Lola: A young girl confronts deadly brain cancer with resolve - Washington Post

"The choice had been Lola’s: to enter a clinical trial testing whether two chemotherapy drugs might be safe for patients with DIPG. Diffuse intrinsic pontine gliomas, striking in childhood at the base of the brain, are especially aggressive, difficult to treat and deadly. Lola opted to take part in the trial at St. Jude Children’s Research Hospital in Memphis with a singular hope. “I’d rather help find something for the other kids that will get DIPG than to not help at all,” she explained. For nearly a year and a half, photojournalist Moriah Ratner followed Lola and the Muñoz family on a journey marked by pain as well as laughter, fear as well as joy, anguish and finally peace. Her camera captured a girl dealing with inevitable loss while trying resolutely to live."

Live like Lola: A young girl confronts deadly brain cancer with resolve - Washington Post

Monday, June 4, 2018

Porochista Khakpour’s Book: Sick

 "In an email to a friend, early in her battle with Lyme, Khakpour wrote, “I am very bad at this.” “This” means being sick, and it’s horrible to think that we’ve created a culture that expects people to do illness well. But we have. In a cemetery for 18th-century British seamen, I once examined epitaphs for the too-soon dead that noted that they met their ends with “resignation.” Now we have to “battle” cancer “bravely.” Is this the expectation now? That we be good at everything—even our pain, even our dying?"

Porochista Khakpour’s Sick, reviewed.