Caregiving Goes to the Oscars

Photo: JamesSteidl/Dreamstime

Photo: JamesSteidl/Dreamstime

What do the Oscars and caregiving have in common? Quite a bit…read below for the articles about recent movies that have engaged our caregiving emotions and the Oscar winners who have been real-life caregivers.

 

Movies that teach us about caregiving

Still Alice Julianne MooreStill Alice – the movie that may spark the Alzheimer’s movement

1st Annual Caregiving Goes to the Oscars (2012)

2nd Annual Caregiving Goes to the Oscars (2013)

Amour – A Caregiving Movie Review

And the Oscar Goes to Caregivers

Oscar winners who are or have been real-life caregivers

Photo: CelebrityPhotos/Dreamstime

Photo: CelebrityPhotos/Dreamstime

Catherine Zeta-Jones won a Best Supporting Actress Oscar for her performance in 2002’s Chicago.  Here is our interview with her about dealing with her mental health issues while caregiving for another Oscar winner – her husband Michael Douglas who battled throat cancer.

Catherine Zeta Jones – a caregiver’s self-care mental health plan

Photo: Creative Commons

Photo: Creative Commons

Diane Keaton won her Best Actress Oscar for her performance in 1977’s Annie Hall, playing the title character. In real life Keaton was a sandwich generation caregiver – caring for a mother with dementia while raising two children.

Diane Keaton – Sandwich Generation caregiver

Photo: Courtesy of Campbell Family

Photo: Courtesy of Campbell Family

When Glen Campbell was diagnosed with Alzheimer’s disease in 2011 his family including his wife Kim and daughter Ashley did not know what was in store for them as his future caregivers but as a family they made one last farewell tour with the music legend.  Nominated for best song at this year’s Oscars for “I’m Not Gonna Miss You,” the Rhinestone Cowboy’s story still touches our hearts.

Glen Campbell’s Farewell Tour

Photo: ImageCollect/Dreamstime

Photo: ImageCollect/Dreamstime

While Glenn Close has not yet won an Oscar, she has been nominated six times including for 1988’s Fatal Attraction playing a woman who had mental instability. The role hits close to home as Glenn has played real life caregiver to her sister who has mental illness.

Glenn Close wants to change your mind about mental illness

Photo: CelebrityPhotos/Dreamstime

Photo: CelebrityPhotos/Dreamstime

Jodie Foster has won two Oscars – one for The Accused and the other for Silence of the Lambs. But it wasn’t until she was honored with a lifetime achievement award at the Golden Globes in 2013 that we learned she was also a sandwich generation caregiver for her mom with dementia.

Jodie Foster – Golden Girl Shines a Spotlight on Her Sandwich Generation Role

Photo: ImageCollect/Dreamstime

Photo: ImageCollect/Dreamstime

Reese Witherspoon won an Oscar for her portrayal of June Carter Cash in Walk the Line. But it was running not walking that brought Witherspoon face to face with a big caregiver dilemma – an older driver who had lost control of the vehicle. Read Witherspoon’s understanding story of the incident:

Reese Witherspoon Forgives Senior Driver in Recent Accident

A Football Wife Helps the NFL Tackle Dementia

Football 50 yard line dreamstime_m_15024968 (2)As the New England Patriots celebrate their glory as victors in the Super Bowl this Sunday, another NFL victory took place off the gridiron several years ago and was led by a warrior woman.

Her name is Sylvia Mackey, wife of NFL Hall of Fame and 1971 Super Bowl hero John Mackey of the Baltimore Colts. Their love story is about football, courage, overcoming all obstacles and fighting for support of those afflicted with neurological challenges. Following is an excerpt from my book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, where I interviewed Sylvia about her story and how she changed the game for the NFL.

For Love of the Game…and the Man

When it comes to the gladiators of the gridiron, he was the Charlton Heston or Russell Crowe of his day.  But in the end, it would be his wife – on the sidelines of his entire career – who would become the warrior at the center of the action.  When John Mackey, No. 88, was inducted into the Pro Football Hall of Fame in 1992, he was only the second tight end to receive the honor.  He was and still is considered one of the best tight ends to ever take the field.  In fact, Mike Ditka, himself a Hall of Fame player and the first “pure” tight end to be inducted into that rare club of exceptional players, statjohn-mackey nfl baltimore colts from WebAs a Baltimore Colt, where he played all but the last year of his career, John scored one of the most famous plays in the NFL championship history.  It was Super Bowl V played in 1971, when John caught the nail-biting pass from the quarterback Johnny Unitas that first careened off the hands of the opposite team’s player, grazed the fingertips of his teammate and finally wound up safely in the arms of John who then ran it for a then-record 75-yard touchdown.  It was this decisive play that helped the Colts beat the Dallas Cowboys and won John his coveted Super Bowl ring.

Twenty-one years later, as John took his place in football’s pantheon of great players for his Hall of Fame induction ceremony, right by his side was the woman who had been in the same spot since his college playing days, his wife, Sylvia.  Theirs would prove to be a true love story, challenged only by a devastating medical diagnosis.

Little did either John or Sylvia know that day in 1992 that 14 years later, John’s toughtest battles would be fought off the football field with his lovely wife serving as both tackler and blocker.  At age 65 John Mackey was diagnosed with frontotemporal dementia (FTD), a degenerative disease caused by the rapid deterioration of the frontal and temporal lobes of the brain.

Tackling Dementia

What makes Sylvia’s story one of inspiration is this diagnosis could have sacked her (in football jargon) but instead she did not let this devastating news knock her down.  One incident that highlights the special challenges dementia caregivers face was played out at the Baltimore/Washington International Airport.

“John and I were on our way to an autograph signing – we never missed one and I was determined this was something we were going to continue to do – it always made John happier as we got ready for these annual trips,” says Sylvia.

JohnandSylviaMackey (2)But this year was different.  There was an incident with the TSA airport security that almost took them both down – literally.  Her husband, proudly wearing his Super Bowl ring and trademark cowboy hat (hallmark of his Super Bowl win over the Dallas Cowboys), refused to remove these items and place them on the conveyor belt to be scanned.  In his mind, he did not understand there had been a 9/11, he did not understand why they did not recognize him, and ultimately he thought they were trying to rob him of his precious possessions.

As John grew more frustrated with the TSA agents who, unaware of his diagnosis, thought he was just being a belligerent traveler, the agents grew increasingly irritated and finally tackled him but not after chasing the six-foot two-inch 220-pound former football player who dragged the agents several feet through the airport until several more agents joined in, handcuffed him.

While a tearful and frightened Sylvia explained to the agents and curious onlookers her husband was the NFL great and one of Baltimore’s favorite sons, John Mackey, and that his illness meant he had no ability to understand what was happening, she ultimately convinced the agents to call an ambulance and they took him off to a local hospital. She collapsed while they dragged her confused husband away, and thought to herself, “I don’t know if I can do this anymore.”

Hemingway wrote, “Courage is grace under fire.” 

When Sylvia caught up with her husband at the hospital, John was back to his typical, jovial, social self – signing autographs for many of the doctors and nurses who recognized the NFL great.  It was at this moment as her husband basked in the bright light of his fame, she realized she could not give up on her husband or herself.  That is when her courage took flight.

Instead of deciding that attending future autograph signings or Super Bowls would be out of the question, Sylvia got to work contacting the head of TSA at Baltimore/Washington International.  She explained her situation and asked for his help to allow her husband to travel – especially to the sporting events and autograph signings he truly lived for and were important to maintaining some type of normalcy in their lives.

The TSA executive designed a plan with Sylvia to have John brought through a private area where they could scan him without incident and without his having to remove the items precious to him.   In addition, the TSA executive also would contact the TSA executive at the arrival airport to explain how similar treatment of John upon his return flight out of their airport would be helpful to avoid any similar, dramatic incidents that neither party wanted.

Now before you think these special plans are just for those with famous last names – this is a lesson learned for all caregivers from Sylvia’s story. If you plan ahead, you can use Sylvia’s travel strategy to continue to travel – most airports will work with caregivers on the special travel needs of their loved one.

The Final Play

Sylvia Mackey bio photoSadly, John Mackey lost his battle with dementia and passed away in 2011.  A few years ago before losing her husband, Sylvia had written a passionate letter to then NFL Commissioner Paul Tagliabue asking for more support for retired players when it comes to their long-term care (LTC).  In his decade-long career, Mackey made about $500,000 – a salary many back-up players make in one season today.  The health benefits plan was championed by current Commissioner Roger Goddell and was adopted by the NFL in 2007.  The NFL named it the 88 Plan, to honor Mackey’s jersey number.  The plan provides retired players suffering from Alzheimer’s disease, dementia, ALS or Parkinson’s disease with $100,000 annually for long-term care or adult day care or $88,000 annually to secure care at home.

Today, Sylvia is a board member of the Association of Frontotemporal Degeneration (AFTD) and speaks to caregivers across the country about the impact of dementia on families.

This is an excerpt on Sylvia Mackey’s story from Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, available on Amazon, Barnes & Noble and other online and local booksellers. 

CastofCaregivers Cover FINAL

Heart Health – Know Your Numbers

 

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Every October we are immersed in a sea of pink – the color for breast cancer awareness –  yet the No. 1 killer of women (and men)  in America remains heart disease.  In fact, twice as many women die from stroke or cardiovascular disease than all cancers combined, including breast cancer.  More than 1 in 3 women will die from heart disease this year – one every minute.

Every February, the American Heart Association celebrates its Go Red Campaign in an effort to paint the town red and get women to stop and understand the truth of their heart disease risks.  Over the last 11 years the campaign’s success has paid off with amazing results:

  • More than 627,000 women’s lives have been saved through awareness and education – that is 330 lives per day
  • Almost two million women have completed the Go Red Check-up – a 10-fold increase since 2003
  • Women have changed their heart risky behaviors – smoking has decreased 15 percent, 1 in 2 women have increased their exercise and cholesterol levels are 6-18 percent lower for those with readings over 200

“Women who Go Red have the awareness and are more empowered to make lifestyle changes,” says Dr. Suzanne Steinbaum, Go Red cardiologist and author of Dr. Suzanne Steinbaum’s Heart Book:  Every Women’s Guide to a Heart Healthy Life.  “Nine out of 10 of the women who visit our web site have made at least one healthy behavior change. But we still need to spread the word because there is a disconnect between women knowing about heart disease as the No. 1 killer and understanding their personal risk.”

Diane and her twin sister, Denise
Diane and her twin sister, Denise

Learn Your Family’s Health History

One woman who became the most unlikely poster woman for heart disease is Dianne Kane-McGunigle of Quincy, Mass.  The 53-year-old platinum blonde stunner was always fit and healthy working as a personal trainer and fitness instructor and running marathons on weekends.  The mother of two had grown girls had always watched her numbers – things like weight, cholesterol and blood pressure and according to her doctor was as healthy as a woman at least a decade younger.

But one day last year, Dianne clutched her chest, hit the floor and found her police officer husband rushing her to emergency.  All she could think about was, “Please don’t let this be bad – I haven’t had grandchildren yet.”

“I come from tough Irish stock and in retrospect I was overlooking some small warning signs because in my family you just tough it out,” says Dianne.

A couple of days before this emergency, Dianne had experienced some acid reflux and her forearms were achy and kind of numb.  She chocked it up to pushing herself too hard in recent workouts.  But the night before her attack she had tiny spams in her heart and she started sweating and feeling nauseous.  Next thing she knew she was on the floor and then in the hospital.

“Heart disease in women often presents differently than what we see in men,” says Dr. Steinbaum.  “It can be a sudden chest pain, such as what Dianne experienced, but it can also be more subtle – shortness of breath, jaw pain, back pain, flu-like symptoms, difficulty sleeping and the symptoms Dianne experienced such as nausea and vomiting.”

In addition, women who are caregivers – caring for an older parent or spouse with a devastating disease – are at greater risk for heart disease because of the prolonged emotional stress of caregiving, neglect of their own health and wellness needs and a tendency to adopt or rekindle bad habits such as smoking.

The ER doctors ran tests and told Dianne she was fine and was probably just experiencing a panic attack or had over-exerted herself at the gym.  But Dianne knew better.

“If I have any message for women out there – it is to be an aggressive advocate in your health and the health of your loved ones,” she says.  “I knew something was really wrong and I wasn’t going to be ushered out of the hospital as someone who just had a simple panic attack.”

She begged a kind nurse to run more tests.  “I’m dying,” Dianne told the nurse.  “You have to help me.”

Additional tests found that indeed Dianne had suffered a heart attack known as a widow maker.  This is a type of heart attack where it is a stenotic left main coronary artery –  a blood clot prevents blood from pumping through the left descending artery often resulting in a massive, sudden, fatal heart attack.  This is the same kind of heart attack that Rose O’Donnell survived last year.

“My doctors and I truly believe if I had not been as fit as I was, I would surely be dead,” says Dianne.

Heart Monitor dreamstime_m_4176220 (2)The American Heart Association advises women to know five important things when it comes to heart disease:

1)      Don’t smoke. Period.

2)      Know your numbers – blood pressure, cholesterol, blood sugar (for diabetes risk which is tied to heart disease).

3)      Maintain a healthy weight and BMI (body mass index) by eating nutritiously.

4)      Have a consistent exercise schedule (it keeps your body fit and reduces stress).

5)      Know your family history.

It is #5 that hit Dianne like a Mack truck.  She had all the other items checked but she had no idea that in her family, the widow maker type of heart attack is on both sides of her family tree.

“That was my wake-up call,” says Dianne, who has an identical twin, Denise.  Now this Go Red spokeswoman talks to other women about heart health and understanding each of the five things that could contribute to a life-altering event.

“Go Red encourages women to wear your red and tell five friends about the heart disease risk factors,” says Dianne.  “I have five sisters, including my twin sister, and we’ve all talked about our family risk.  I Go Red for them.”

 

Celebrating the Grammys & Music Therapy

Groovin Puppy dreamstime_3978556 (2)Music therapy is a powerful tool for caregivers of those with Alzheimer’s, dementia, Parkinsons, autism and other diseases or disorders. Read more about the power of music and the musical stars who have been caregivers.

Music Therapy – a 5-Note Plan for Caregiver Calm

Glen Campbell’s Farewell Tour

First Lady Caregivers

First LadiesWe celebrate two great former Presidents on February 16 but Caregiving Club celebrates the First Ladies who have also served as a family caregiver. This month read the stories of Rosalynn Carter, Nancy Reagan, Hillary Clinton, Laura Bush and Michelle Obama.

First Lady Caregivers

Caregiving at the Oscars

Oscar Statues LG dreamstime_m_19071736 (2)We celebrate Oscar® Sunday by putting the spotlight on caregivers – in reel life and real life!

Read here about recent movies about caregiving and the real-life caregivers who have been Oscar winners.

Still Alice May Be the Movie That Sparks the Alzheimer’s Movement

This article was originally published on PBS Next Avenue

Still Alice Julianne MooreWhile Julianne Moore can start clearing space on her mantel for that best actress golden Oscar statuette, it is the troupe of passionate players at the heart of this story – an author, writers, producers, directors, actors and advocates – who brought Still Alice to the big screen and who also deserve the accolades.

Julianne’s tour de force performance in the role of a lifetime as a woman with early on-set Alzheimer’s disease, was made possible because a group of people were committed to showing the world what Alzheimer’s feels like for the 5.4 million Americans diagnosed today.

The “behind-the-scenes” story is how Still Alice just may be the little movie that ignites a big movement on how we view people with cognitive impairment and neurodegenerative diseases and propels Alzheimer’s onto the same stage of awareness and support as AIDS, cancer and heart disease.

The back-story begins in 1998 as Lisa Genova, a Harvard-trained neuroscientist with a grandmother suffering from Alzheimer’s disease, discovers that almost all the literature about dementia only looks at Alzheimer’s from the outside in, the perspectives all those of clinicians, researchers and family caregivers instead of the actual people diagnosed with the disease.

“What really drove the inspiration for the book was asking myself ‘what does Alzheimer’s feel like’ and not being able to find the answer in any literature – scientific or otherwise,” Genova told me during our hour-long phone interview. “Somehow I felt I had to write this story and in doing so it would keep me connected to my grandma.”

It took a few years and rejection from all the publishers she approached for Genova to bring her novel approach of telling the “inside out” story of Alzheimer’s to the printed page. Not deterred by publishers’ claims that a novel about Alzheimer’s was too limited, fearful and depressing, Genova self-published Still Alice in 2007 finally letting readers into the mind, heart and daily experiences of 51-year-old Alice. While the novel is about walking in Alice’s shoes, Genova also realistically portrayed the family’s experience with an understanding that the Alzheimer’s diagnosis affects more than just the person with the disease.

Read other Alzheimer’s caregiving books recommended by Caregiving Club

From Book to Screen 

Flash forward to an Alzheimer’s Association advocacy event in Washington, D.C. where Hollywood insider and Alzheimer’s caregiver and advocate, Elizabeth Gelfand-Stearns, listens to Genova, whose book has caught fire within the Alzheimer’s community and has hit the New York Times best-seller list, read a moving passage from Still Alice.

It struck a chord with Gelfand-Stearns, who had a maternal grandmother and a mother with Alzheimer’s. Along with her father and family, Gelfand-Stearns had created The Judy Fund, to honor her mother who was diagnosed with the disease at age 62, considered early-onset. The combination of telling a story of Alzheimer’s for the first time from the perspective of the person diagnosed AND showcasing that Alzheimer’s is not always about being age 80 and laying helpless in a nursing home – it can strike in your 40s, 50s, 60s – was all Gelfand-Stearns needed to start looking for a way to bring the book to the screen.

The Judy Fund Event (L to R): Sherri Snelling, Caregiving Club; Dr. Maria Carillo, National Alzheimer's Association; Elizabeth Gelfand-Stearns, The Judy Fund; Dr. Jill Kalman, Mt. Sinai Medical Center New York

The Judy Fund Event (L to R): Sherri Snelling, Caregiving Club; Dr. Maria Carillo, National Alzheimer’s Association; Elizabeth Gelfand-Stearns, The Judy Fund; Dr. Jill Kalman, Mt. Sinai Medical Center New York

“I just knew so many people, especially women who are disproportionately affected by Alzheimer’s, would recognize themselves in Alice,” Gelfand-Stearns told me. “This story was the opposite of the typical response to Alzheimer’s – to push it away and not think about it because ‘I’ll worry about it when I’m 80.’ This was the OMG moment when I realized everyone can see themselves in Alice – an accomplished, successful professor, wife and mother in her 50s. If Alice can have it, so could I, or my sister, or my friend.”

Read Sherri Snelling’s PBS Next Avenue article on how Alzheimer’s Impacts Women the Most

Gelfand-Stearns says the reality is Alzheimer’s is the 6th leading cause of death in the U.S. and the only disease in the Top 10 which has no cure and no survivors. This is our society’s next big epidemic and it’s important to not delay what we know is coming – a rising tide of aging people who will have dementia yet no hope to slow the progression or cure the affects.

Together with her producing and advocacy partner, Maria Shriver (the poster woman for the toll on families dealing with Alzheimer’s, her father Sargent Shriver died from the disease) Gelfand-Stearns helped shepherd the book to its big screen debut collecting various co-producing partners. The wish became reality when Julianne Moore signed on to play the titular character, Alice, and convinced her fellow cast to sign up for well-below their star status asking prices, including Alec Baldwin as Alice’s husband and young sensation Kristen Stewart as the eventual caregiving daughter, Lydia.

Moore, whose acting skills are matched by her exhaustive character research, insisted on spending four months talking to early on-set Alzheimer’s patients, their family caregivers, researchers, doctors and long term care agencies in order to fully embrace and immerse herself in the Alzheimer’s experience and to present the story of how it feels to day-by-day lose your memory, your independence, your life.

“I need to see it for myself to authentically play it,” Moore told Gelfand-Stearns. Moore became especially close to one woman, Sandy, who was diagnosed at age 45, even younger than the fictional Alice. Moore related that Sandy would have days where she could remember and function almost normally, and then there would be days where things in her brain were lost. What moved Moore is while Alzheimer’s was erasing a patient’s memories and daily abilities, the personality and essence of who this person is remained. It is the realization that Alzheimer’s patients do not disappear, that Moore has said in numerous interviews, is what interested her in doing the movie.

Still Alice movie poster

Rounding out this passionate group are screenwriters and directing partners, Richard Glatzer and Wash Westmoreland. Right before filming began, Glatzer was diagnosed with ALS, different from Alzheimer’s but still a progressive neurodegenerative disease. His understanding of how your life is slowly slipping away from your control brought a nuanced touch to the movie and inspired the cast and crew that life and your life’s passion can continue. During production, unable to speak, Glatzer would direct the actors via an iPad.

All involved with the movie are hopeful this becomes the defining moment when society, our government agencies and legislators realize we can no longer dismiss or ignore the impact of dementia.

“It’s easy for the world to ignore the elderly,” Genova tells me. “People don’t typically rally around an 80-year-old with Alzheimer’s, it’s sad and heartbreaking but it does not create a movement. But it’s almost impossible to ignore someone in their 50s with this disease.”

Genova believes this is why the vast moviegoing public may make Still Alice a rallying cry and help to erase the stigma of this disease which has lived in the shadows for too long  (just think of what Philadelphia did to ignite support for those with AIDS and HIV).

Gelfand-Stearns said many years ago we never said the word “cancer,” it was called the “Big C” because people were afraid and it was a death sentence. Then in the ‘80s and ‘90s AIDS and HIV was stigmatized and seen as only affecting a certain part of the population until Hollywood got behind the movement and gained Washington, D.C.’s attention.

Today, with treatments such as mammograms and AZT and society’s support with walks and ribbons, and the federal funding needed – these diseases can claim survivors and the stigma is non-existent. Gelfand-Stearns is hoping Still Alice and the campaign she is launching with Maria Shriver and the Alzheimer’s Association, My Brain, will have the same results. The campaign strives to have people use their brains in combating this disease and to understand that an Alzheimer’s diagnosis, which on average is around age 72, means the person has actually been living with the beginnings stages of the disease for 15-20 years.

Alz Assoc My Brain Campaign Celeb Poster

“My wish is that Julianne wins the Oscar, making everyone want to see this film which will lead to showing people the humanity, love and dignity of Alzheimer’s patients,” an emotional Genova told me. “If my book and this movie can be a cause for the call to action, what could be better than that?”

©2015 Sherri Snelling

The Dream Team – How Caregivers Can Help Loved Ones Achieve Their End-of-Life Wishes

martin-luther-kingFifty-two years ago, Martin Luther King Jr. gave his famous “I Have a Dream” speech on the steps of the Lincoln Memorial in Washington, D.C.  As we honor Dr. King’s birthday this month with the “MLK Day of Service” family caregivers can perform two acts of service for their loved ones:

1)      Ensure your loved one’s end-of-life wishes are in order (including Living Wills, Health Care Directives, Durable Power of Attorney, DNR, etc.).

2)      Help your loved one fulfill something on their bucket list.

Following are two great ways for caregivers and their loved ones to achieve both of these dreams.

The Five Wishes

The Five Wishes gif

When it comes to end-of-life wishes – especially the legally binding paperwork so essential to ensure families are not pulled apart when they need to come together – it is hard to start the conversation. There is a tool available that is not only affordable, valuable and legal but helpful in beginning the dialogue about end-of-life. It is called The Five Wishes.

In 1997, Jim Towey, who had served as MotherTeresa of Calcutta’s friend, volunteer AIDS worker and legal counselor, created a nonprofit organization, Aging with Dignity. At the core of the organization was a document Towey created that was in his words a “living will with a heart and a soul.” Essentially, the document asks five questions that cover medical, personal, emotional and spiritual needs to help you communicate how you want to be treated if you are too ill to speak for yourself:

  1. Which person you want to make health care decisions for you when you can’t make them.
  2. The kind of medical treatment you want or don’t want.
  3. How comfortable you want to be.
  4. How you want people to treat you.
  5. What you want your loved ones to know.

Click here to watch the Me Time Monday Video: How to Have the C-A-R-E Conversation

To date, the $5 document (either downloadable to your computer or mailed to you) has been filled out by 18 million people worldwide and has been translated into 26 languages and Braille. It is used in all 50 states and meets the legal requirements for an Advance Directive in 42 states (in the remaining eight states you can attach The Five Wishes to the forms that state requires).

Because The Five Wishes has interesting origins with the principles of Mother Teresa infusing its purpose, this can be the conversation starter with your family.  While the emphasis is on aging baby boomers to ensure these wishes are in place, having your wishes written, legally binding and communicated to family is smart for everyone.

It is the legacy of the Terri Schiavo case that shows us the agony and antagonism that can happen to tear families apart when someone’s end-of-life care is unknown. Schiavo was only 27 when she was put on a ventilator and feeding tube after cardiac arrest left her brain dead.  She lay in a vegetative state for 14 more years while her husband battled her parents over whether or not to keep her alive on machines.  If she had a Living Will or a Five Wishes document, there never would have been a battle.

Read the article on the late Brittany Maynard and the “Death With Dignity” Movement

The reality is if you do not have the conversation, family members can be confused and conflicted which can lead to emotional exchanges you do not want.  Dying is not a choice but how the end will be is.  We owe it to our families to share those wishes.  Your legal wishes may be written down but now is the time to start talking.

The Dream Foundation

DreamFoundationSquareWhen it comes to dreams, we all have our bucket list.  However, if you are battling a terminal illness, that bucket list seems even more precious but perhaps more elusive. Pain, immobility and money issues can dash these dreams and many give up their joy so they can focus their efforts on surviving.  But finding those moments of peace, reconciliation, validation and pleasure are part of life – no matter whether we are at the beginning, middle or end of our days.

One organization understands how important this is and grants real-life bucket list wishes to help caregivers help their loved ones achieve these end-of-life dreams.  Appropriately, it is called The Dream Foundation.

Seventeen years ago, Thomas Rollerson wanted to give his dying partner one last dream:  to go to the movies and see Mrs. Doubtfire starring his favorite actor, Robin Williams.  Seemingly a simple request, they set out for the move theater with water bottles to keep his loved one hydrated, a critical tool in abating the pain of his illness.  The theater asked the gentlemen to leave because you could not bring your own water into the theater. Rollerson, dedicated to helping his loved one see a last movie, called organizations dedicated to childhood dreams for terminal patients such as Make-A-Wish and the Starlight Foundation. All these organizations limited their help to children only and Rollerson was amazed to find no group granted adult wishes.

Undaunted, he contacted the movie studio, Twentieth Century Fox, and was astounded yet grateful when they provided a copy of the film (since the movie was still in theaters it was not yet in video stores).  This experience galvanized Rollerson to help other caregivers fulfill the dreams of the adult loved one who has last wishes. Thus, The Dream Foundation was created in 1994.

To date, The Dream Foundation has fulfilled thousands of wishes for adults battling terminal illnesses including more than 2,500 dreams in 2012.  Rollerson is proud of the foundation’s success – one of the few and longest-operating nonprofit organizations to grant wishes nationwide for terminally ill adults and to not limit the wishes to those with certain diseases (for instance there are other groups who grant wishes for adult cancer patients).

“I had a network of contacts in the Hollywood and film community and I started reaching out to see how others could help and it grew from there,” says Rollerson.

As opposed to the over-the-top wishes we watch Jack Nicholson and Morgan Freeman enjoy in the movie, The Bucket List (such as an African safari, dining in Paris and riding motorcycles along the Great Wall of China) he says his favorite wishes granted are the simple ones.  The Dream Foundation hosted a 104-year-old’s birthday party and invited the dream recipient’s brother whom he had not seen in 40 years.  Another woman had never stayed in a first- class hotel so the foundation gave her a weekend stay at a five-star resort. A 40-year-old man with lung cancer was granted a last wish of a fly fishing trip with his young sons and yet another dream recipient was given a state-of-the-art hearing aid “so he could hear what his grandchildren were saying to him.”

“It’s the simple joys in life we take for granted that become so important as we face ‘the end’,” says Rollerson.  “I learn from each dream we’ve given and it has become a gift to me to give these dreams.”

CastofCaregivers Cover FINALNote:  Read more about end-of-life issues in A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care by Sherri Snelling.

 

 

©2015 Sherri Snelling

2015 – Helping Caregivers See the Light

2015 Caregiving ClubAll year long we are dedicated to posting resources and articles that help caregivers better prepare for their role of a lifetime: the unexpected caring of a loved one. Caregiving can take us to dark places but our hope is that armed with information we can help bring light into your life.

Caregiving at the Movies – Still Alice

Still Alice movie posterA must-see on your movie list should be Still Alice – Julianne Moore’s poignant Oscar-nominated role reminds all of us that Alzheimer’s disease can strike even in your 50s.  Read the blogs about this movie that will propel the movement to END ALZ.

September – Prostate & Ovarian Cancer Awareness Month

SEP Prostate, Ovarian Month

September is National Prostate Cancer Awareness and National Ovarian Cancer Awareness Month. Each year, 22,000 women are diagnosed with ovarian cancer and 220,000 men are diagnosed with prostate cancer. Learn more about prevention, treatment and support groups for these cancers from American Cancer Society.

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Read our CEO, Sherri Snelling’s interview with Alana Stewart on her caregiving journey with best friend, Farrah Fawcett, who battled another type of rare anal cancer.

Alana Stewart and Farrah Fawcett – Caring for an Angel

 

Celebrity Spotlight

2016 Oscars

 

 

In February the stars and millions of viewers worldwide come together for Oscar Sunday. While the televised event celebrates the star’s performances, we celebrate those Oscar winners who have been or are caregivers.  This month we highlight those stars with Sherri’s celebrity interviews and we also share our own awards for past movies that have brought caregiving from real life to reel life.

Catherine Zeta Jones – a caregiver’s self-care mental health plan (2008 Oscar winner for Chicago)

Diane Keaton – Sandwich Generation caregiver (1977 Oscar winner for Annie Hall, 1981 Oscar winner for Reds, she was also nominated for Marvin’s Room where she played a caregiver, and Something’s Gotta Give where she played a caregiver for Jack Nicholson’s character)

Jodie Foster – Golden Girl Shines a Spotlight on Her Sandwich Generation Role (1989 Oscar winner for The Accused, 1982 Oscar winner for Silence of the Lambs, nominated for Taxi Driver and Nell)

1st Annual Caregiving Goes to the Oscars (2008)

1st Annual CARE-Y Awards – TV’s Best Caregivers (2009)

2nd Annual CARE-Y Awards – TV’s Best Caregivers (2010)

3rd Annual CARE-Y Awards – TV’s Best Caregivers (2011)

4th Annual CARE-Y Awards – TV’s Best Caregivers (2012)

5th Annual CARE-Y Awards – TV’s Best Caregivers (2013)

Still Alice May Be the Movie That Sparks the Alzheimer’s Movement (originally published on PBS Next Avenue)

And the Oscar Goes to Caregivers (originally published on Huffington Post)

Amour – A Caregiving Movie Review (originally published on Huffington Post)

 

 

The Wish to Have Death with Dignity

brittany-maynard-1-435The physician-assisted end-of-life debate received a jolt the last few weeks as an unlikely heroine for the Death With Dignity movement emerged in the 29-year-old terminally ill brain cancer patient Brittany Maynard. Given the choice of a painful death where her seizures will multiply, intensify and last longer, her memory loss will become permanent and her excruciating headaches will rob of her of any peaceful, pain-free moments, Maynard chose to end her life her way. Along with her newlywed husband and her mother and stepfather, Maynard moved this summer from Northern California to Portland, Oregon, one of only four states where adults with terminal diagnoses can legally determine when and how they will die.

The death with dignity movement began back in the early ‘90s in Oregon when a ballot measure passed and eventually became law in 1997. The definition of death with dignity is that mentally competent adults who have a terminal illness may request a doctor prescription for life-ending medication that will be self-administered.  It was around this same time that Jack Kervorkian became a lightning rod for the controversial act of euthanasia where in his estimation he helped 130 people in physician-assisted suicide.  To date, Oregon, Montana, Washington and Vermont have state laws protecting death with dignity decisions and legally allowing participating physicians to prescribe lethal doses of medication to terminal patients for self-administration.  New Mexico courts have upheld cases although appeals are in progress and several other states have pending death with dignity legislation including Connecticut, Hawaii, Kansas, Massachusetts, New Hampshire, New Jersey and Pennsylvania and a measure is set to be introduced in Colorado in January.

Over the last 20 years, national Gallup polls have shown the majority of Americans – 70 percent – support death with dignity rights for individuals. And while end-of-life conversations are difficult, especially for adult children serving as family caregivers for their older parents, a Pew Research study found 35 percent of Americans have actually put their wishes in writing.

In order to ensure wishes are carried out, it is not just enough to discuss it with family. Having a legally binding document, typically a living will, durable power of attorney for medical decisions and a do not resuscitate (DNR) or do not intubate (DNI) order documents are required. One document that is lesser known but extremely powerful and helpful to caregivers is called The 5 Wishes. More than 18 million Americans have created a 5 Wishes document that meets legal requirements as a living will in 42 states. The document outlines: 1) Who you want to make your health care decisions if you are unable; 2) The type of medical treatment you want or don’t want; 3) How comfortable you want to be; 4) How you want people to treat you; 5) What you want your loved ones to know.

Trends in health care show as a nation we are learning how to die with dignity. With the increase in hospice care at home or in long-term care facilities, more than half of the 2.5 million people who die every year can receive compassionate care where a team of health care and spiritual experts help the patient and family members cope with end of life. But that does not mean end-of-life wishes are overlooked in the hospital setting where the Centers for Disease Control and Prevention report one-third of all deaths occur.

In May, several Los Angeles area hospitals and health care providers endorsed some groundbreaking guidelines on how to facilitate patient end-of-life wishes. The coalition included: Cedars Sinai Hospital, Healthcare Partners Medical Group, Kaiser Permanente Southern California, Keck Medicine of USC, Los Angeles County+USC Medical Center, Memorial Care Health System, Olive View-UCLA Medical Center, Providence Little Company of Mary Medical Center Torrance, Providence Trinity Care Hospice and UCLA Health System.  The guidelines require doctors, normally only schooled in saving lives, to explain clearly to patients when a medical treatment under consideration, such as feeding tubes, intubation or dialysis may deprive the person of life closure or preclude a peaceful death. The guidelines are the compassionate care California health care organizations are striving to achieve where patients have the chance to say to a loved one, “I love you,” “Forgive me,” or “Good-bye” one last time.

When Maynard’s April YouTube video about ending her life on her terms went viral and recently surpassed 9 million views, it was because a youthful, vibrant, newly married woman was deciding how her life would soon end.  But dying at 29 or 99 should be the same. Maynard said at the time, “I had no choice to be diagnosed with a brain tumor but I can make a choice how I spend my last day.” For Maynard that means spending it surrounded by family in her bed at home and free of terrible pain. She was upset that people would see her choice as suicide calling that label for her situation “really unfair.”

For the person with the diagnosis, the dilemma is how not to have death affect loved ones in devastating ways. Maynard’s argument for choosing death with dignity is to spare her husband and parents the struggle of watching her in pain, losing her quality of life day by day, hour by hour.

Although Maynard released a second video last week explaining that while her health continues its rapid decline, she can still smile and laugh with family and friends and that she may let the November 1 chosen date pass, as I write this article the news reports Maynard has in fact taken her last breath in the arms of her husband and mother.

Maynard’s mother, Debbie Ziegler, had said she would be “honored” to become a caregiver for her adult daughter as she loses her faculties. Ziegler would have lovingly bathed, fed and diapered her adult daughter as she had when she was a child. But in the end, Maynard’s mother said the decision is her daughter’s.

“It’s not my job to tell her how to live and it’s not my job to tell her how to die,” said Ziegler on the video.  “It is my job to love her through it.”

It is this gift of choice about how and when we will die that may be most precious to all of us and the gift which family caregivers can become the partner in fulfilling.