Newswire

The Life Matters Media Newswire aims to serve as a comprehensive portal of all news related to end of life decision making and care. We aggregate stories from other media outlets in one place- here, where you can access them easily. We also strive to produce original content covering stories we feel are receiving scant attention.


Facing Alzheimer’s With Family

The Genius of Marian intimately explores the devastating effects of Alzheimer’s disease on a close-knit Northeastern family. The documentary, directed by married couple Anna Fitch and Banker White, focuses on Banker’s 61-year-old mother who is struggling with early-onset Alzheimer’s disease.

The film, made of blurry home movies, one-on-one interviews and family photos, opens with a scene from their 2009 Christmas celebration. Pam White offers her family a jar of macadamia nuts, but mistakenly refers to them as “acadania nuts,” foreshadowing a sharp decline in her cognitive abilities.

Pam, a former model and social worker, often smiles and retains a sense of elegance throughout the film’s most difficult moments. In one extended scene, she is unable to remember how to put on her coat and scarf. In another, she struggles to enjoy a fishing trip at the lake, to the annoyance of her husband, Ed, who serves as her primary caregiver. Not one scene is glamorized.

Pam

Pam White faces early-onset Alzheimer’s. Still from “The Genius of Marian.”

We learn that in 2008, Pam decided to write a book about her mother, acclaimed painter Marian Williams Steele, who died in 2001 from complications associated with Alzheimer’s. One year into the project, Pam was diagnosed, and was never able to finish it.

“I’ve never made a personal film before. The desire to move home, because we were based in San Francisco, was initially to help my dad out and make sense of things,” Banker told Life Matters Media. “I think it became clear that it could be a very powerful thing to share with other people. The film even helped our family communicate better.”

Anna first became acquainted with Pam through the earliest video recordings. “It made me think about my relationship with my parents,” she said. “I thought this would resonate universally.”

Early in the film, Pam seems to be in denial about her diagnosis. In a tense scene recorded while driving, Banker asks if she remembers her mother’s decline. “She had Alzheimer’s, and I don’t,” she replies. “Didn’t the doctor say that you did have early-onset Alzheimer’s?” Banker asks. “Careful!” Pam says, focusing her attention on the road. She is upset because she can no longer simply take the car and drive to the grocery store.

“There are definitely things that are awkward, but in a documentary you are tasked with managing a relationship between you and your subjects and being honest with the audience,” Banker said. “Alzheimer’s is such an isolating disease, because of the stigma attached with it and the requirements it puts on caregivers.”

According to the Alzheimer’s Association, nearly six million Americans face the irreversible disease, a number expected to increase as the baby boomer generation ages. Nearly one in six women 65 and older will be diagnosed in their lifetimes.

One of the most difficult effects of Alzheimer’s on family and friends is the slowness of the decline, Banker added.

“You are constantly reminded of who this person used to be, while you’re simultaneously losing this person, so there is no space for mourning. You are kind of overwhelmed with the responsibilities of caring and redefining your relationship,” he said. “But there is also a special side, because it does give you time. Some of the most special moments with my parents have happened over the last four years.”

Anna said she believes a lack of hope and response from patients is one of most difficult parts of the disease. “You’re caring for someone who is able to give you less and less as things get more difficult, and that’s just hard,” she added. “There is also no room for hoping it will get better, that there will be a better path ahead.”

In an effort to help patients and families share their experiences, Anna and Banker said they hope to launch an interactive story sharing website in the coming weeks.

The Genius of Marian, an official selection of the 2013 Tribeca Film Festival, will be broadcast across the nation Sept. 8 as part of the PBS series POV.

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Facing The End Of Life With Laughter

Jen Bosworth uses comedy to make others comfortable with a not-so-funny subject: death. After serving as her seriously ill mother’s primary caregiver, Bosworth incorporated her experiences into “Why Not Me…Love, Cancer and Jack White.”

She spoke with Life Matters Media about her one-woman show and her upcoming collaboration with Life Matters Media.

What is ‘Why Not Me’ about?

It’s a show about celebrating life, and it’s also about seeing the beauty and tragedy when someone approaches the end of their life. It’s about taking opportunities to talk with our loved ones about it.

I’m a comedian, and the show’s definitely not a bummer– it’s been called a triumph and hysterical. It’s a comedy about cancer, end of life, among other things.

What inspired you to write and perform this show?

bosworth---why-not-me-poster-new-datesI was my mom’s primary caregiver. In 2010, metastatic breast cancer came back and spread into her lungs. I made a conscious decision that I would put my life on hold to be with her and take care of her. During those 18 months, I started writing down my thoughts and feelings, even funny anecdotes we had together. After she passed away in 2011, I had a friend approach me and tell me I needed to make a show.

Three days before my mom passed away, she called me over and she said, ‘Look, I know you’re an artist and I want you to promise me that you’ll pursue that.’ It was sort of her dying wish.

How does it feel honoring your mother through your show?

It feels amazing. My mom was a Colombian immigrant, and she was really direct, assertive and funny. The law around my house growing up was that you do what mom says. I think towards the end of her life she realized I could help people through comedy.

How does the musician Jack White come into the play?

I’m not a huge music buff, I didn’t really even know who the White Stripes or Jack White was. But I began to have these vivid, reoccurring dreams about him. I don’t know how it got implanted.

Now looking back, it was sort of my escape from the hardships and tragedy of what cancer was doing to my mom. It was like a fantasy life that I created at night in my dreams to cope. You know, I’m happily married, I have a wonderful husband, but I started to have this bizarre nocturnal relationship.

I didn’t tell anyone, but now I think it’s important to share because when you go through something horrible there needs to be an escape. His music was my escape.

Once my mom passed, those Jack White dreams stopped. It could have been anybody, it could have been David Hasselhoff from Knight Rider, Paul Newman or Brad Pitt. The show really flatters Jack White, I hope he knows about it.

What inspired you to partner with LMM?

I have strong, warm and passionate feelings for Life Matters Media, and that is why I wanted to partner for the August 1 show. On the local, national and even international level, Life Matters helps get conversations about the end of life started. When I was thinking about working with nonprofits, Life Matters was one of the first organizations I thought of.

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Life Matters Media Celebrates One Year Anniversary

Megan Hryndza shares her end of life wishes.

Megan Hryndza shares her end of life wishes.

Life Matters Media celebrated its first anniversary with a ‘Death over Dinner’ event this week at the Italian Village in Chicago’s Loop. More than 50 gathered to share their end of life wishes over wine, pasta and birthday cake.

“Our conversation is not meant to be a morbid one, but instead a very human discussion in which we consider what we truly want both in life and its closure,” said LMM President and Co-Founder Randi Belisomo. “We take on how we, individually, want to die: the most important and costly conversation America isn’t having.”

Mary F. Mulcahy and Jamie Cummings discuss the importance of advance care planning.

Dr. Mary F. Mulcahy and Jamie Cummings discuss the importance of advance care planning.

In an effort to help encourage more open discussion about death and dying, the “Let’s Have Dinner and Talk About Death” campaign has helped thousands of Americans share their end of life wishes with friends, family members and even strangers. Michael Hebb, a restaurateur and end of life care activist, founded “Death over Dinner” in 2013 to launch a “patient-led revolution at the dinner table.” LMM hosted Chicago’s first-ever “Death over Dinner” in January.

Belisomo began the evening by inviting each guest to offer a toast to a deceased loved one they admired. Belisomo raised a wine glass to her grandmother, Elizabeth, who died in 2012 at the age of 97. “Unlike most Americans, my grandmother was healthy and went to bed in her own home and never woke up. I wish you all as peaceful a death as hers,” she said.

Throughout the four-course Italian dinner served family style, guests offered their stories of deceased loved ones or seriously ill relatives; others shared their fears and concerns about the costs of aggressive end of life care.

As the evening continued, Belisomo provided prompts between courses to help assist conversations at the tables set for six. Among them were the questions: “How would you like your life to end?” “What would you do if you were told you wouldn’t survive the month?” “How can you help support loved ones at their death?”

Randi Belisomo leads the 'Death over Dinner'

Randi Belisomo leads the ‘Death over Dinner’

Jamie Cummings, a 23-year-old certified nursing assistant from Kenosha, Wis., attended his first “Death over Dinner.” “It was very thought provoking, and I would absolutely attend another one. End of life is a conversation that isn’t often discussed among young people,” he said. “One day, I may have these conversations with a patient.”

Craig Klugman, chair of DePaul University’s Department of Health Sciences, called the night “courageous.” “This is something very hard for some people to talk about, but here people shared their innermost thoughts,” he said. “I would absolutely attend another. It’s not a one-time conversation.”

Since launching in June 2013, the Life Matters Media website has garnered more than 110,000 views. Their reporting has been highlighted by dozens of news organizations, including Forbes and The Chicago Tribune.

LMM ANNIVERSARY

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Award-Winning Author Katy Butler Coming To Chicago

In collaboration with the Chicago End-of-Life Care Coalition, Life Matters Media will host award-winning journalist and author Katy Butler at Loyola University in Chicago on June 19. Butler will offer reflections on her best-selling memoir Knocking On Heaven’s Door, a personal examination of how medical technology is often used in ways that cause unnecessary suffering at the end of life for millions of Americans.

Butler spoke with LMM about her inspirations and experiences behind the book’s creation.

Are you surprised by the book’s success?

Katy Butler, author of 'Knocking on Heaven's Door'

Katy Butler, author of ‘Knocking on Heaven’s Door’

What most surprised me is the positive response from within American medicine, because the book really is a sharp critique of where we have drifted to with end of life practices in our medical system.

I didn’t expect to be invited to give grand rounds, and it has been a really amazing experience. I have also noticed a growing counter-culture in medicine– particularly from the palliative care doctors, hospice providers and primary care physicians– people who really want to see a change.

People know that something is wrong and see the suffering, or they have a family member that goes through this experience and realize that even though they are doctors and nurses, they still can’t navigate the system.

Do you ever receive letters from readers?

Sometimes two or three letters a day. I feel validated, and it makes it clear to me that what I am saying is becoming kind-of mainstream. Many, many letters from people facing an ill-advised late-life operation.

I have also noticed more stories of “blue skying” in letters. That’s when doctors tell you about a treatment’s advantages, and how it could work out really well- but they never talk about risks.

What does “good” end of life care look like to you?

To me, I think the ideal for most people is still the ideal of the Victorian age: you die at home, surrounded by friends and family, with pain controlled and with meaningful interactions with loved ones to help leave them better off.

That is not what we see in the U.S. Instead, one-fifth die in intensive care, and 30 percent cycle though intensive care in the last month of life. That leaves families traumatized.

What I have come to realize since I finished the book is that I do not think of good end of life care as being separate from good medical care for the aging. Instead, good end of life care should be a continuum- a shift from thinking of medicine’s most important role as maximizing longevity or curing people.

What would you say to a doctor who maintains that he or she has the responsibility to prolong life at all costs?

If you only believe in making your patient survive as long as possible, there will be a time when you feel like a failure. Every patient will die. But you can widen the lens and realize that you can always do something to relieve suffering and support the patient’s family.

Are you excited to present in Chicago?

This will be the first time I will be presenting to an end of life coalition, people who are really up on these issues- more so than other medical professionals. I want to devote some time to language. The end of life improvement movement needs a lot of help with language, because a lot of the language of medicine is still full of euphemism.

For example, “goals of care” is a term within medicine to describe the shift from all-out “let’s save their lives” to “let’s minimize suffering.” But to a lay person, what the hell does “goals of care” even mean? The word “care” is completely overused.

 Register for the event here

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‘The Fault In Our Stars’: Facing Death With Love

Unique among summer blockbusters, The Fault In Our Stars centers entirely on complex characters facing the effects of terminal illness.

The film, based on the bestselling book of the same name, tells the story of Hazel Grace Lancaster (Shailene Woodley), a lonely 17-year-old living with thyroid cancer and severely weakened lungs (she relies on an oxygen machine to breathe). Upon her mother’s insistence that she make friends and have some fun, she reluctantly attends a cheesy young-adult cancer support group in the basement of their local church.

There, she meets Augustus Waters (Ansel Elgort), a confident 18-year-old determined to make the most of the time he has left. Augustus, still recovering from a bout of osteosarcoma, has had one leg amputated to help contain the cancer. Another friend, Isaac, has lost one of his eyes to a tumor and will soon go blind.

All Hazel, Augustus and Isaac seem to want is to be treated “normally.” Hazel knows she is dying, and she must constantly remind her mother (Laura Dern) that her time on earth is limited. Hazel has accepted it, even though she says “it sucks.”

At home, Augustus is surrounded by motivational posters hung by his parents (one involves a rainbow) and old trophies from his athletic days. He now prefers quirky books and monster movies.

TFINSIn one of the film’s most effective opening scenes, Hazel, while reading her favorite book at Barnes and Noble, looks up and spots a young couple ordering coffee and laughing. She has come to accept that she will never experience a romantic relationship. But Augustus soon falls for her, and most of the film focuses on their short, intense romance. They picnic, watch movies, and even travel to Amsterdam to meet her favorite writer.

The film, directed by Josh Boone, is radical in that it never portrays the characters as “sickly.” Hazel and Augustus text, flirt, kiss and have sex. Isaac, after his girlfriend breaks up with him because of his blindness, eggs her car. When one of the main characters nears death and stops aggressive cancer treatments, he invites his friends to a “pre-funeral” to read their eulogies. He wants to know his effect on their lives.

Libby Ferguson, a 21-year-old who attended the film with her close friend, told Life Matters Media she was excited to finally see a film portraying young people with terminal illness. “I deal with a lot of cancer in my family– my mom actually has breast cancer right now, so it’s very close,” she said. “Everyone was talking about this movie before it came out. It’s not a sugar-coated movie.” Most of the audience, Ferguson added, teared up near the end.

The film, expected to top the box office this weekend, has been met with universal acclaim.

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