Cat in the Hat Creator a Caregiver, Too! Who Knew?

Happy Bday Dr Seuss

Who Reads?  We Read!

On March 2 every year, we celebrate Read Across America Day, the reading initiative started by the National Education Association in commemoration of the birthday of our beloved children’s book author, Dr. Seuss (whose real name was Theodor Geisel). Some of his most widely published children’s books included:  The Cat in the Hat; Horton Hears a Who!; Green Eggs and Ham; One Fish, Two Fish, Red Fish, Blue Fish; and my favorite, How the Grinch Stole Christmas.

Dr Seuss wife HelenWho Cares?  He Cared!

What is perhaps the least known about Dr. Seuss is that he was a caregiver for his first wife, Helen Palmer Geisel, who was also a children’s book author.  For several years during perhaps his most productive writing phase, Helen, suffered from several chronic illnesses including battling cancer.  While Helen helped guide Theodor’s talents of his whimsical drawings of animals and the telling of their stories, Geisel gave his muse the love and care she needed throughout their marriage until her death in 1967.

In the years Geisel cared for his ill wife, there was not much recognition of the role of the spousal caregiver and even less support, especially for men who were caregivers. Since the Geisels did not have children, Geisel was primary caregiver for his wife during those years.

man and womanMen As Caregivers

In a 2009 study, Caregiving in the U.S., published by the National Alliance for Caregiving, at that time men made up about one-third of all caregivers.  However, a 2012 Pew Research Center’s Internet and American Life Project reports men now comprise 45 percent of all family caregivers in the nation. And, according to a study by the Alzheimer’s Association, men caring for a family member with Alzheimer’s disease or dementia almost doubled from 19 percent to 40 percent from 1996 to 2011.

Often men’s caregiving duties are to handle the financial and legal paperwork, medical insurance and home safety modifications for an older parent.  But, when it is spousal caregiving, as it was with Dr. Seuss, the caregiving duties can be all-encompassing.

And the emotional impact of caregiving hits men as much as women.

In the book, Who Says Men Don’t Care – A Man’s Guide to Balanced and Guilt-Free Caregiving, authors James V. Gambone and Rhonda Travland help men identify their caregiving style.  The authors looked at four generations of men as well as male personality differences and identified the following caregiving styles:   the Manager, the Searcher, the Loner, and the Techno-Virtual Caregiver. According to the authors, one issue for men is having a harder time asking for help.

“While all caregivers face stress and frustration, we found that men often have a harder time dealing with a caregiver role,” says Travland.  “It’s very difficult for them to ask for help.”

While they may not seek help as readily as female caregivers, a 2012 study conducted by researchers at Bowling Green State University shows men may cope with caregiver stress better than women.  The study looked at the differences in male and female caregivers of an older parent and how they dealt with stress.

Photo: DavidLee/Dreamstime

Photo: DavidLee/Dreamstime

“We found men seem better at dealing with caregiver stress because they take a ‘block and tackle’ approach to caregiving tasks,” says I-Fen Lin, associate professor and lead researcher on the study. “They complete a caregiving task and move on to the next thing. Conversely we found women are more socialized to be nurturing but they internalize their caregiving performance with constant worry and anxiety, thus, leading to higher stress levels and more persistent stress.”

During Geisel’s caregiving years support groups for caregivers were virtually non-existent. In today’s world, whether in-person support or virtual online support is a growing area of the caregiving world. Homewatch CareGivers, a comprehensive home care agency founded in 1980, created what it’s billing as the first online community for male caregivers.  The online forum provides male caregivers with crucial caregiving information from peers such as how to deal with sundowning of an Alzheimer’s loved one, how to bathe a parent of the opposite sex or what advice veteran caregivers have for a new caregiver.  According to the site, men are more likely to use the internet to seek information and support but less likely than women to seek caregiving training which makes the forum a vital resource for men who are caregiving.

When it comes to caregiving, we all have to find ways to get support so we can continue to have balance in our lives – whether it is writing a book, coaching a soccer team or working at a demanding job.  While Dr. Seuss wrote for children, his lessons on life impact all ages. These words from our beloved Dr. Seuss should help caregivers to feel empowered to find that balance and remember that their own health and wellness is in their hands and their hearts:

Dr Seuss Brains in My Head

 

 

CastofCaregivers Cover FINALTo read more about men as caregivers and resources that can help, get Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

You can also read Sherri’s other blogs about men as caregivers:

Billionaire caregiver David Murdock, CEO of Dole

Famous men of caregiving

Increase of men as caregivers

 

 

 

 

©2015 Sherri Snelling

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

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 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.

 

Joan Lunden – Breast Cancer Warrior on Caregiving Legacies

This article originally appeared on Next Avenue

When she stepped out onto the stage at a recent AARP convention, Joan Lunden looked as sunny and radiant as she always has as a 17-year co-host on “Good Morning America” in the ‘80s and ‘90s and more recently as the healthy living guru and businesswoman who inspires everyone she touches.

She came to talk to the gathered baby boomer and beyond crowd about caregiving – a role she had played with her mother whom she lost in 2013. But with bright eyes and a perfectly coifed hairstyle, Lunden said she wanted first to address “the elephant in the room.” A month earlier, Lunden, age 64, had gone public with the news that she was one of the 232,670 new cases of breast cancer among women in the U.S.  She announced she had just finished 12 weeks of chemotherapy and would enter another round of the cancer-killing therapy in a couple of weeks. As she smiled at the supportive crowd, she seemed strong and vulnerable at the same time.

Lunden’s life had been a series of triumphs and challenges. As a young girl, she lost her father, who was a cancer surgeon, in a plane crash. As she began her career as a TV broadcast journalist, it was during this period she had become caregiver to her brother, who had health complications from type 2 diabetes, and her aging mother who was eventually diagnosed with dementia.  She says what she realizes now that she did not at the time, is that caring for her brother and mother simultaneously over 30 years ago is when her caregiving journey began.  After GMA, she became a health advocate, writing books, making speeches and continuing to bring her California-girl sunshine to the masses, all the while crisscrossing the country from her East Coast home to the brother and mother who needed her care on the West Coast. After divorcing her first husband, she found love again with current husband, Jeff Konigsberg, only to face infertility issues and opt for surrogacy to have her last four children (two sets of twins who joined Joan’s three older daughters from her first marriage).

NewsletterAdI met Joan in 2010 when she interviewed me as a caregiving expert on a special RLTV program called “Taking Care with Joan Lunden.”  Since then, I have interviewed her a few times over the years and am always amazed at her boundless energy, her “you can do it” attitude and her genuine interest in people and their lives. Although her life reads like a Lifetime movie, the up and down Lunden roller-coaster has never impacted her exuberance. Joan credits her parents for her optimism. She said, “My mom was the ultimate positive thinker and my dad was a doer.”

It is this positive outlook that brings Joan a lifeforce which I know will help her conquer breast cancer and is the same prescription that made her a model caregiver.  What she learned as a caregiver is now empowering her as a cancer warrior.

For instance, Joan told me she had guilt over not moving her mother closer to her while her mom lived her last years with dementia. Eventually, Joan realized that removing her mother from her comfort zone of the California sunshine and dear friends to colder climes on the East Coast, would not have solved the problem. Joan was traveling constantly during those last years and would not have had much more time to care for her mother even if she had lived down the street. The staff at the California dementia care home where she eventually moved her mom reminded Joan that the periods between visits were inconsequential to someone with dementia who has lost ability to understand space and time.

Joan also expressed guilt over being diagnosed with breast cancer. Advocating for healthy eating much of her adult life, she says she felt that somehow she must have done something wrong along the way. Joan realizes now she was paying lip service to reading food labels – ignoring the real information.  She said, “The American diet is the best fertilizer for growing cancer.” Today Joan eats clean and has eliminated wheat, dairy and sugar from her diet and advocates for avoiding GMO foods (genetically modified organisms).

Having the strength and energy to battle cancer is the same diet plan caregivers need to have the stamina to keep caring for a loved one. And letting go of guilt is the ingredient for a strong emotional core during caregiving challenges.

Joan also looks for the silver linings in life – a lesson all caregivers need to push through some difficult and overwhelming feelings. When it came to dementia and caring for her mom, Joan realized she had to let go of trying to bring her mother back into Joan’s world. Instead Joan had to step into her mom’s world. When she showed her mom photos of her grown daughters, her mother would express confusion or lack of interest in not knowing these people. But when Joan swapped those photos with some of her and her brother as children and included some of her parents as young newlyweds, her mother’s face would light up. Along the way, Joan learned new things about her parent’s early life that she felt she would have missed if her mother did not have the cognitive impairment that made them both refresh memories from long ago.

When it comes to cancer, Joan said her silver lining is in recognizing the irony of losing her adored father who just happened to be a cancer surgeon. His plane crashed returning from a conference where he was training other cancer doctors.  When Joan was first diagnosed, she pondered whether or not to go public with the news. As she told the AARP crowd, “I thought it was ridiculous I could stay private with this news – it would break somehow. But my second thought was I had always wanted to follow in my dad footsteps and become a surgeon but scalpels and blades where not my thing. However, my dad gave his life training others about cancer – now I can follow his footsteps and do the same thing.”

Joan Lunden People Magazine Oct 2014As I look at the beautiful, bold, bald cover photo of Joan on this week’s People magazine, it is clear she is our teacher, our healer, our cheerleader and our role model in caregiving and in caring for ourselves.

Sherri has interviewed Joan several times over the years and included Joan’s caregiving story in her book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

Caring for a Best Friend – On Wings of An Angel

In honor of National Friendship Day – August 3 – we celebrate the special caregiving friendship of Alana Stewart and Farrah Fawcett. Here is their story…

farrah, alana from book coverSome friendships last a lifetime.  And then there is Alana and Farrah.   For Alana Stewart and the late Farrah Fawcett their friendship continues even though Alana lost her dear friend of more than 30 years in 2009.  Theirs is a true love story – it’s about sharing your innermost secrets, having each other’s back, laughing when you want to cry, taking the good with the bad, never giving up on each other.  This kind of friendship is rare.

When it comes to caregiving, many friends will bake a casserole, visit you in the hospital or help by picking up your kids at soccer practice.  Not many will put their own lives on pause for almost three years to chase promising new cancer treatments half way across the world, be your advocate with health care professionals, hold your head and hand while you spend hours with nausea from chemotherapy.  That is love.

When I told Alana how rare her friendship with Farrah is, she responded, “I didn’t think it was so rare, it was just the thing to do.”  And when Farrah asked Alana to be with her in Germany and the U.S. while she sought treatment, there was no question in Alana’s mind that she would be there for her friend.

Over the course of three years, from Farrah’s anal cancer diagnosis in 2006 to her death in 2009, Alana was by Farrah’s side.  She made several trips with Farrah to Germany to seek new treatments not yet approved in the U.S.  Alana recalls how hard it was to watch her friend go through painful surgeries, chemotherapy and radiation treatments that were helping her fight the cancer but were also beating down her immune system making the athletic Farrah so weak.

“Farrah had such amazing courage and faith, we never even talked about the possibility of these treatments not working,” says Stewart.

As is typical in caregiving situations, Alana became Farrah’s protector.  For instance, she ensured no paparazzi caught a photo of Farrah in a wheelchair.  Alana explains this wasn’t vanity on Farrah’s part it was her not wanting other cancer patients to feel she was losing the fight or that she was weak – she wanted to be strong for the people who had written her letters about being their inspiration.

Alana also became Farrah’s advocate with various health care professionals.  While the choices Farrah made for her treatment were all her own – Alana took notes and asked a lot of questions and at Farrah’s request, documented the conversations on video that became an Emmy-nominated NBC documentary, “Farrah’s Story” that aired one month before Farrah’s passing in 2009.

“It is a really rare friend who steps in like a family member to be a primary caregiver,” says Dr. Rosemary Laird, medical director at the Health First Aging Institute in Florida.

One thing Alana and I spoke about was the healing power of friendship.  “There are a lot of studies about people who have love in their lives who have a better chance of recovery,” says Stewart.  “Love is a very healing energy…knowing someone is in your corner as you battle an illness is really important because it makes you feel like you are not going through this alone.”

When it comes to the power of friendships, a book called Connected:  The Surprising Power of our Social Networks and How They Shape Our Lives by Nicholas Christakis and James Fowler, illuminates how friendships can hold sway over us (and us over them) in both good and bad ways.  This influence can extend to three degrees of friendship and according to the authors, having a first-degree friend who is happy increases the likelihood of your happiness factor by 15 percent.

Healing Herself By Helping Others

alana-stewart-headshot-002 (2) from AlanaOne of the things that Alana promised Farrah is that she would carry out her wishes to continue the work of the foundation Farrah had established to help those families facing cancer.

Today, Alana is president of the Farrah Fawcett Foundation, a non-profit organization dedicated to exploring non-traditional methods of cancer research and clinical trials, such as gene therapy and targeted therapy, and providing early detection and preventative programs.  If Farrah could not find the cure in her lifetime, she wanted to ensure the foundation created in her name would do it for others after she was gone – and Alana is the keeper of that flame.

The foundation hosts conferences with leading cancer researchers and experts around the globe.  Recent gatherings have focused on chemo sensitivity testing.  The foundation is also dedicated to helping caregivers and families directly.  The Farrah Fawcett Patient Assistance Fund helps families struggling with financial challenges while going through cancer treatment.  “Whether it’s meals or hotel bills or even parking costs for every day when you are at a medical center while your loved one gets treatment, our program provides direct financial help to those families in need,” says Stewart.

Being at the helm of the Farrah Fawcett Foundation has helped Alana keep Farrah’s memory and legacy alive.  Alana’s message and her mission with the foundation is what Farrah wanted – to give back to the world, something Alana says she learned from the experience of caring for Farrah.  In the end, Alana just wants her friend to be proud of the foundation work that carries her name.

Stewart says one of the other things she learned about her journey with Farrah was the importance of doing something for another person.

“Getting out of yourself and your own problems and just showing up for someone.  What I learned is to try to appreciate every day of your life because it can take a turn and change in a heartbeat,” says Stewart.  “You also learn to value the friends in your life and not take love and families for granted.”

My Journey with FarrahIn Alana’s book, My Journey with Farrah, Ryan O’Neal, Farrah’s longtime love and companion writes, “The bond between women friends is all-powerful and not to be taken lightly.  But the bond between Alana and Farrah is like nothing I’ve ever seen between two women.  They grew together like vines.”

You can follow the activities of the Farrah Fawcett Foundation on Facebook and Alana Stewart on Twitter at AlanaKStewart.

More of Alana and Farrah’s story can be found in Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

White House dreamstime_m_13650075 (2)On President’s Day, we honor two great men who have led this country through its creation and one of its most trying times – namely George Washington and Abraham Lincoln respectively.  But today I honor the First Ladies who have helped care for this nation and in turn have been caregivers for family members.

Hillary Clinton, Nancy Reagan, Barbara and Laura Bush and the caregiving pioneer, Rosalynn Carter, are passionate advocates for our nation’s 65 million caregivers because they have taken the caregiving journey themselves.

Hillary Clinton dreamstime_m_18904593 (2)Hillary Clinton – Caregiving Champion

In 2011, Hillary Clinton lost her 92-year-old mother, Dorothy Rodham.  While the details of her mother’s passing and possible illness were kept private from the invasive world of 24/7 news media, Clinton has been a long-time advocate of the nation’s caregivers when she was a Senator from New York.  She supported several pieces of proposed legislation which offered more services to support those family members who are providing 80 percent of the long-term care to keep a loved one living at home as long as possible.

In an interview from Clinton’s campaign days for the Democratic presidential nomination, she credited her mother with giving her the tools — and toughness — to enter politics.  In the end, her mother had also given her daughter the tools to be a compassionate caregiver.

 

Nancy Reagan cropNancy Reagan – The Loving, Long Good-bye to a Spouse with Alzheimer’s

Nancy and Ronald Reagan’s touching affection for each other was evident in the letter former President Reagan wrote to tell the world he was suffering from Alzheimer’s disease.  In this letter, President Reagan not only helped shine his celebrity spotlight on a disease many Americans did not understand, but he also highlighted the concern he had for Nancy who would be caring for him.  He understood the difficult emotional toll it would take on his wife and as the disease progressed, and the last 10 years of his life he did not even recognize her.

As the caregivers of today’s more than five million Americans diagnosed with Alzheimer’s disease know, Nancy lived the last 10 years of her husband’s life known to dementia caregivers as the long good-bye. While Nancy had the resources to care for her husband in ways most Americans do not, the emotional toll it took on her cannot be ignored.

What was perhaps most heartwarming was that the strained relationship Nancy had with her stepchildren and with her own son and daughter, actually improved over the course of President Reagan’s disease diagnosis and decline.  Family dynamics are sometimes difficult to navigate during caregiving and can lead to added stress and strife.  But, in this instance, it brought a family closer together which is one of the gifts that can come from caregiving.

Since President Reagan’s passing, Nancy has become a passionate advocate for Alzheimer’s disease awareness and education and especially advocating for the research around embryonic stem cells that can hopefully lead to a cure.  She also speaks about her personal caregiving journey and the need to recognize caregivers as a crucial part of the care team around a loved one.

In the last few years, Nancy has needed the care of her family more than ever having suffered from several falls – one in which she broke her pelvis without realizing it until the persistent pain drove her to the doctor who finally diagnosed the fracture.  More than 2 million older Americans suffer from falls requiring emergency room care and every 29 minutes a senior dies at home from a fall according to the Centers for Disease Control and Prevention (CDC). 

Rosalynn Carter headshotRosalynn Carter – Caring for Parents On Both Ends of Her Life

Long recognized as one of the pioneers of the caregiving movement, Rosalynn Carter is known for her famous description of the life event of caregiving in America:

You have been a caregiver

You are a caregiver

You will be a caregiver

Or someone will be caring for you

In her book, Helping Yourself Help Others – A Book for Caregivers, former First Lady Rosalynn Carter writes, “We can learn to approach caregiving as a blessing as well as a challenging task.”

She knows of what she speaks firsthand:  Rosalynn was only 12 years old when her father was diagnosed with terminal leukemia.  As the eldest daughter, she helped care for her ailing father and supported her mother by also caring for her younger siblings.  She took up caregiving again for several relatives with cancer after she left the White House and most recently was caregiver for her mother who died in 2000 at age 94.

Rosalynn’s gift to caregivers comes from a lifetime of understanding the challenges – emotional, physical and financial – that accompany caring for a loved one.  A long-time devoted and determined advocate for those Americans with mental health issues, Rosalynn Carter is also behind the founding of the Rosalynn Carter Institute (RCI) for Caregiving at Georgia Southwestern State University in Americus, Georgia.

The mission of the RCI is to establish local, state and national partnerships with organizations focused on quality, long-term home and community based services to help caregivers.  The RCI activities include a variety of advocacy, academic, and awards and scholarship programs.  While many of the caregiver programs are Georgia-based, these programs are examples that help serve as models for nationwide caregiver support, education and training.

Mrs. Bush 41 and 43

Barbara BushLast holiday season, Barbara Bush was called into service as caregiver to her husband, former President George Herbert Walker Bush known as “Bush 41.”  Bush suffered from terrible bronchitis which prompted a hospital stay and time in the intensive care unit when his fever spiked.  Although age 88, Bush has been a vital senior, skydiving for a recent birthday and traveling the globe as a peace ambassador with former rival President Clinton.  Discharged in January, Barbara is stepping into that role that so many octogenarian spouses are:  caregiver. But it is a role she has played before for her child with a chronic illness. While the stress of the presidency has a tendency to prematurely age the men who have held office, it was Barbara who suffered incredible stress and depression and subsequent “white” hair after caring for her ill child and then experiencing the premature death of her four-year-old daughter Robin to leukemia.

 

Laura BushLaura Bush, an only child who grew up in the oil town of Midland, Texas, played caregiver to both her mother and her father.  While campaigning with her husband George Bush who was running for governor of Texas, her father was diagnosed with Alzheimer’s disease.  While Laura played back-up to her mother who was primary caregiver, she poignantly wrote in The Shriver Report:  A Woman’s Nation Takes on Alzheimer’s about the impact to families when Alzheimer’s disease happens.

“What my mother noticed first was that my father could no longer fill out bank deposit slips. He would stare at the lines on the forms, a look of confusion washing over his face. So Mother began to make the deposits for him. We never got a diagnosis of Alzheimer’s or a specific form of cognitive failing. But we saw his mind erode. Once, he asked our daughter Barbara to get him some ‘B & Bs.’ He meant M&Ms, but he kept saying ‘B & Bs.’ In her 10-year-old way, she understood him and came out of the grocery store with the brown bag of the bright candy just the same.”

Laura stepped in again to care for her mother, Jenna Welch, who was diagnosed with and survived breast cancer when she was 78.  Laura’s support of Susan G. Komen for the Cause and her activism on behalf of women’s risk of heart disease has led her to play a leading role in women’s and caregiver health issues. She is an ambassador for The Heart Truth campaign created by the National Heart, Lung and Blood Institute and dedicated the inaugural display of the First Ladies Red Dress Collection at the John F. Kennedy for the Performing Arts in 2005.

42-21828752First Lady, First Daughter – Sandwich Generation Champion

Our current First Lady Michelle Obama joined the ranks of caregiver growing up as the daughter of a father with multiple sclerosis.  Her experience in helping to care for a father with an autoimmune disease currently affecting more than 400,000 people in the U.S. with 200 more people diagnosed every week gave her early insights to the impact of caregiving on families.  Michelle has been a true champion of the Sandwich Generation – those caregivers squeezed between caring for two generations – children and older parents.

While women may be seen as “the power behind the throne,” these First Ladies are proof that women also put the heart into caregiving.

This is adapted from Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.


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A Woman Tackles the NFL and Dementia

Football 50 yard line dreamstime_m_15024968 (2)As the Seattle Seahawks celebrate their glory as victors in Super Bowl XLVIII 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, stated Mackey should have been first.

john-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. 

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Suze Orman’s Lessons Learned on Long Term Care

Sherri Snelling talked to America’s financial goddess, Suze Orman, and found when it comes to caregiving, we all face challenges with money. Read Suze’s story as caregiver to her mom and what she learned about the costs of long-term care. You can also read this article on on Forbes.com and PBS Next Avenue.org.

Suze Orman’s $25,000 a Month Cautionary Tale – Your Parent’s Long Term Care Can Cost You

100010081-suze-orman-headshot-2013.240x240Suze Orman has been called a “force in the world of personal finance,” was recently named one of the Top 10 most influential celebrities by Forbes magazine and is the single most successful fundraiser in the history of Public Television.  Yet even with the award-winning TV show, best-selling books, numerous accolades and worldwide influence as a guru of empowering people to save for retirement, get out of debt and have a healthy relationship with money, Orman admits she was as unprepared as the rest of us for becoming a caregiver for her late mother.

It was just a few years ago when Orman realized the harsh, brutal winters of her Chicago hometown were talking a toll on her mother, Ann, who was in her 90s. Her mom was becoming more and more isolated – living alone and not venturing outside.

“She just stayed at home and wouldn’t go out for months on end,” Orman told me.  While Orman lived in San Francisco at the time, her brothers were closer – one in Chicago where he picked up their mother for Sunday dinners – but it wasn’t enough to maintain their mother’s spirits and health according to Orman.

After a family discussion about Ann’s long-term care, Orman made the difficult and rare decision to not only move her mom to an assisted living facility in Florida, but Orman pulled up stakes herself and with her wife left their beloved Bay Area home to move to Florida to be there daily with her mom.

A decision to move because of caregiving is not only emotionally difficult but may be financially impossible for most Americans.  More than eight million of the nation’s 65 million caregivers live long-distance – defined as two hours or more away – from their loved one according to the non-profit Caring From a Distance. Genworth which conducts an annual survey of long term care costs for nursing homes, assisted living facilities and in-home care issued a report, Beyond Dollars – The True Impact of Long-Term Caring,  finding 42 percent of caregivers moved their older parent into their home for three years or more to care for them and off-set in-home care costs.

What was truly unique and brilliant about Orman’s plan is SHE moved into the assisted living facility with her mom for the first week to help her mom adjust and settle into her new home.

“I looked at it like the first day of school – you want to ease your parent’s transition to something new and I wanted to see firsthand how things ran,” explains Orman.  “It’s one thing to make an initial VIP visit to a facility, it’s another to wake-up and have breakfast in the dining room with everyone else and experience the daily routine.” Orman chuckles as she remembers residents and staff wondering why Suze Orman was living in assisted living but the experiment helped her understand the realities of long-term care.

The Real Costs of Care

Photo courtesy of Suze Orman

Photo courtesy of Suze Orman

While Orman’s mom agreed to the move and new living accommodations, Orman says she had not been successful in getting her mom to discuss and select a long-term care plan that would have covered these costs. According to the Department of Health and Human Services, at least 70 percent of people over 65 will eventually need long-term care, either at home or in a nursing home, an expense that will not be completely covered by Medicare, a fact lost on most unaware Americans. A great resource for caregiver education on long-term care is the web site operated by the Administration on Aging which outlines long-term care benefits, services and who pays for what.

“I filled out the paperwork on long-term care plans and gave it to my mom on several occasions but she never signed them,” laments Orman.  She believes it is the typical response of parents, particularly mothers, to not want their children, no matter how adult or capable, to worry about them.  Yet, ultimately without a good long-term care plan or robust savings, the financial burden will fall to the caregiver.

“I spent $25,000 a month the last two years of my mom’s life to have around-the-clock care for her and I was lucky because I was in a position to afford the cost – something most Americans cannot do,” cautions Orman.

Last year the Commission on Long-Term Care, a task force created by Congress to address the gaps when the CLASS Act (Community Living Assistance and Services and Supports) long-term care program (which was championed by former Senator Edward Kennedy) was repealed, issued a summary of recommendations recognizing the tremendous financial burden on families to adequately address our nation’s long-term care costs. However, no specific remedies or solutions were spelled out frustrating many in the aging organization network.

In response to the Commission’s recommendations, Howard Bedlin, vice president of Public Policy & Advocacy for the National Council on Aging, said in a statement, “Medicare does not cover long-term care, private insurance is unaffordable or unavailable to the vast majority of Americans, and individuals and families are forced to spend-down their life savings into poverty before getting help from Medicaid. It is now time for Congress to stop ignoring the problem and take action. Far too many members of Congress are out of touch with the enormous challenges faced by millions of middle-class families struggling to afford long-term care services needed to stay at home and out of institutions and relieve the tremendous economic, physical, and emotional burdens of caregiving.”

As Suze Orman learned in her own caregiving experience, the emotional and financial burdens for long term care of our elder population can fall squarely on the shoulders of family caregivers.  She advises caregivers to avoid living in denial of this situation today because it may destroy your financial stability tomorrow.  Or as Orman succinctly told me, “It’s easy to die, it’s hard to age.”

Suze’s Sage Financial Advice for Caregivers

Bucketful of Cash dreamstime_xs_13109928 (2)Orman has now counseled other family members, including her aunt and uncle, to secure long-term care plans. Her advice is if you can afford the premiums and you can make a promise to yourself to continue to pay into the plan even after 10 years, then it is a wise financial move.

Since January is Financial Wellness Month, I asked Orman to provide some savvy financial advice for caregivers. A great help is to check out Suze’s financial planning tools, “Must Have Documents” on her web site as well as these tips:

  • Buy only what is affordable. Do not stretch to buy a policy that covers 100 percent of anticipated future costs. It is far smarter to buy the amount of coverage for which you are sure you can keep making the premium payments. It makes no sense to buy a policy today that you will have to abandon in a few years because it is too expensive; you will get no benefit if that happens. Focus on what is safely achievable: Better to buy a policy that will cover 25 to 50 percent of future costs than no policy at all.
  • Insist on an inflation adjustment. The cost of care rises each year; you need a policy whose benefit will also increase. Given the above-average inflation rate for health services, look for a 5 percent annual inflation adjustment.
  • Aim for the shortest possible elimination period. This is the time before your policy kicks in; for example, if you have a 30-day elimination period, you’d pay for your first 30 days of care out of pocket. The shorter your elimination period (30 days is a typical minimum), the pricier the policy. If it’s 90 days or longer, make sure you have other assets that you could use to pay for your care for that length of time.

You can find more costs of caregiving and financial tips/resources in Sherri’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

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Joan Lunden’s Coast to Coast Caregiving Coverage

I first met Joan Lunden on the set of a special TV program Joan hosted for RLTV, “Taking Care with Joan Lunden,” where Joan interviewed me as an expert on caring for an older loved one at home.  I turned the tables on Joan and interviewed the famous interviewer for this story which is excerpted from my book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

Golden Girl

lunden_joanFor 17 years throughout the 1980s and 1990s, she woke us all with “Good Morning America” as co-host of ABC-TV’s national morning show.  But, it was only six years ago that Joan Lunden, the sunny, blonde, California-born and raised TV journalist received her own wake-up call.

She remembers it like it was yesterday.  In her words, “It 100 percent shook me up.”  It was back in 2005, that her brother Jeff, who had long suffered from Type II diabetes, passed away.  Joan had been caregiving for both her ailing brother as well as her then 87-year-old mother, Gladyce.  While her brother suffered the ravages of diabetes – blurred vision, headaches, operations on hands and feet, etc. – her mother, Gladyce suffered from signs of dementia and had several mini strokes over the years.  For both their safety and Joan’s peace of mind, she had purchased a condominium in the Sacramento, California area where Joan had grown up and paid for them both to live there together.

Meanwhile, Joan lived across the country with her home base on the East Coast where she was raising two sets of twins under the age of 10 with her second husband and playing “empty nest” mom to her three older daughters from her first marriage.  In addition, she had not slowed down since leaving “Good Morning America” in 1997, traveling the country as a spokesperson on healthy living, authoring several books, and managing a growing business focused on healthy living.

Joan was both a Sandwich Generation caregiver – one of the 24 million Americans caring for children and a parent simultaneously and thus, sandwiched between caregiving duties – and a long-distance caregiver.  More than eight million caregivers care for a loved one long distance – whether they are two hours away or across the country as in Joan’s case.  This makes caregiving more difficult – you are not there every day to see the small things which can be warning signs that something is changing and your loved one needs more care.

Sunrise, Sunset

Although she mourned her only brother’s passing, it was not his death that rocked Joan’s world.  It was the realization that her mother’s dementia was so much worse than even she knew.

“My mom had ‘sundowners,’ a typical symptom of dementia and Alzheimer’s where the person becomes irritated, irrational and sometimes violent as the sun is setting,” explained Joan.  She also showed signs of paranoia especially after Joan moved her mother into an assisted living facility.

“Mom was afraid to go downstairs and visit with the other residents, they frightened her and yet she could not tell us why,” said Joan.

Joan soon realized that she had been overlooking her mother’s real needs and issues. “It is easy to overlook things when you live far away from your loved one,” says Joan.  “They put on a happy face and they seem fine and you may see small things but you want them to be fine.”

Alzheimer’s and dementia, which affects more than five million Americans today, can also be a sneaky disease.  An older loved appears relatively healthy and fine physically but is suffering from dementia that can cause sudden mood shifts or other emotional problems, especially frightfulness and forgetfulness.  It is only through the activities of daily living that one sees how critical proper care becomes and Joan had not seen this before.

Joan encountered what I call “Goldilocks Syndrome” trying out several facilities before finally finding the right environment for her mother’s health needs and happiness. After Gladyce suffered several falls breaking her foot, her rib, then hitting her head and needing staples did Joan realize a specialized care facility would be necessary.  The social worker at the hospital where Gladyce was treated for her falls put Joan in touch with a senior care facility advisor.  The advisor assigned to Joan assessed Gladyce’s needs and then took Joan and Gladyce on a tour of several facilities that she thought would work.  They settled upon a small residential care facility with just six residents in a large home setting.

Using Her Journalistic Instincts – Tracking Down Leads

Glady and Joan 93 Bday 3 (2)When Joan’s brother passed away, it was left to Joan to decide if her mother could continue living independently with some personal care assistance from an outside agency or a professional.  In addition, Joan needed to go through all the paperwork for her mother that her brother had been handling.  Joan, her brother and her mother had been a threesome as Joan grew up since her father was tragically killed in a plane crash when Joan was only 14.

Faced with a mass of paperwork and a lot of missing documentation, Joan got down to doing what she does best – investigating.  As a journalist you have to be inquisitive and look for clues to the real story.  In Joan’s case she had to search through mountains of paperwork and become an amateur genealogist to be able to help her mother.  She could not access her mother’s bank account, she could not find a social security card or driver’s license, and she had nothing to go on except she knew her mother’s maiden name.

An elder law attorney that Joan had secured advised her to find her mother’s birth and marriage certificates.  This would be verification for the Social Security office to issue her mother a duplicate card since Joan could not find the original.

In addition, Joan would have to have her mother authorize her as a co-signer on the bank account and grant her access to health insurance and other critical information that has privacy protection.  Thank goodness in Joan’s case her mother was still lucid enough to authorize her daughter to help – in many caregiving situations the loved one can no longer provide that authorization and it becomes a costly and time-consuming burden for the caregiver to get this done.

“You think you know your parents but then something like this happens and you realize maybe you do not know as much as you should,” says Joan.  This is especially true when it comes to verifying records and making decisions on their behalf.

In retrospect, Joan says, “I wish I had the family meeting before the crisis in care happened but I am typical.  The crisis happened and all of a sudden you have to become an instant expert at so many issues around elder care.”

Joan’s advice to all caregivers, current and future, is to take a page from her long-running morning show career.  “Have the conversation, start the dialogue, do the interview with your loved one,” she says.  “And, most importantly, don’t stop communicating – talk to your loved one as often as possible, talk to their doctor, ask questions, talk to the facility administrators and health care professionals – stay on it .  It is the most important tool you have – it keeps you connected to your loved one and to the essential care needs they have.”

Joan recently lost her mother, who was known as “Glitzy Glady” at the memory car residential facility she called home.  Joan is following in her energetic mother’s footsteps. As the poster gal for 60 being the new 40, Joan says she is healthier today than she has ever been in her life and that her caregiving experience has given her new insights into the message of “prepare for the worst and hope for the best.”  Her inspirational attitude is captured in a book she co-authored about caregiving stories, Chicken Soup for the Caregiver’s Soul.

NFL Wife Tackles Dementia & Changes the Game

Sylvia Mackey bio photoDuring the fall Mondays typically mean Monday Night Football.  But the heroes are not always found on the gridiron – sometimes it is the caregiver on the sidelines whom we should applaud.  Sylvia Mackey, wife of NFL Hall of Fame player John Mackey of the Baltimore Colts, is one of those heroes.

Her caregiving story is about dealing with her husband’s dementia for more than a decade. She also gained the attention of one of the most powerful organizations in sports, the National Football League (NFL), which resulted in the 88 Plan, a break-through health care benefits plan that gives security and support to former players and their families when it comes to brain-related illness.  You can also read a version of this story on PBS Next Avenue.

While this story is about caregiving, football and dementia, at its heart, this is a love story.

For Love of the Game…and the Man

john-mackey nfl baltimore colts from WebWhen 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, stated Mackey should have been first.

As 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

JohnandSylviaMackey (2)

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.

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

NFL PlayerCare

Sadly, 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. Her message to all caregivers is a mantra her husband used  during his legendary football days – “Prepare.  Prepare.   Prepare.”

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.


Suze Orman’s Lessons About Long Term Care After Caring for Her Mom

Suze Orman and mom AnnAmerica’s financial guru, Suze Orman dispenses expert advice via TV, radio, her books and her Web site on how to manage your money and make it work for you.  But when she became a caregiver to her mother, she learned even experts encounter challenges that can cost you.  Read Sherri’s interview with  Suze Orman appearing on Forbes.com and PBS NextAvenue.org on what you may not know about long term care.