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

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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.

Glenn Close Wants to Change Your Mind About Mental Illness

All caregiving can be exhausting, frustrating, overwhelming and stressful but for the caregivers of those with a mental health issue the societal stigma you face creates additional challenges.

According to the National Alliance of Mental Illness (NAMI), 1 in 4 adults in the U.S. has a diagnosable mental disorder and the average age is 14 for the on-set of mental illness.  NAMI is leading the national awareness campaign —  the National Mental Illness Awareness Week is October 6-12 –  first established by the U.S. Congress in 1990. The campaign also includes National Depression Screening Day on October 10.

Shining a Spotlight on Mental Illness

Glenn Close dreamstime_m_20156298 (2)Oscar-nominated and Emmy and Tony Award-winning actress Glenn Close wants to help lift the veil of mental illness to reveal the myths and eliminate the shame associated with bi-polar disorder, schizophrenia, post traumatic stress disorder (PTSD) and other mental health issues through a national public service campaign.

Glenn has become a champion who is shedding light on the dark world of bi-polar disorder and schizophrenia which affects her sister and her nephew respectively.  Appearing on the TV morning show, Good Morning America, Glenn said, “I believe we need to be having discussions around mental illness and talk as openly as we do about other diseases such as cancer or diabetes.”

Starring alongside her sister, Glenn launched a public service announcement (PSA) campaign on mental health issues created by BringChange2Mind, the nonprofit organization Glenn helped found to eliminate the discrimination felt by those with mental illness and their family caregiver.  Her hope is increased awareness will get more people to seek help.

Caregiver Depression a Slippery Slope

In a study of caregiver health risks, the National Alliance for Caregiving reported 91 percent of those caregivers whose health was in decline reported suffering from depression over caring for a loved one.

In addition, the Centers for Disease Control and Prevention (CDC) reported in May of this year deaths from suicides since 2009 had surpassed deaths from motor vehicle crashes in the U.S.  The report also found the increase in suicides were most significant among the baby boomers – for men age 50-59 years old an increase of 47-49 percent and for women age 60-64 an increase of 59.7 percent. One potential cause cited for this increase was caring for an older, ailing parent.

We also know that for those 15 million Americans caring for a loved one with Alzheimer’s disease, the risk of becoming isolated from friends, other family and life’s typical social connections is a common issue based on how loved ones are shamed by their diagnosis.

According to the Alzheimer’s Disease International’s World Alzheimer Report, about 25 percent of people with dementia report hiding or concealing their diagnosis due to the stigma surrounding the disease, and 40 percent say they are often excluded from everyday life.

Sherri’s Other Articles on Mental Health

Read here about caregivers of veterans with invisible wounds of PTSD and TBI

Read here about  Catherine Zeta Jones living with bi-polar disorder

Presenting the 5th Annual CARE-Y Awards

And the Awards Goes to . . . Fifth Annual CARE-Y Awards – Caregivers on TV

5th Annual CARE Y AWARDSFor the last five years I have bestowed my own version of the Emmy® Awards – something I call the CARE-Y Awards℠ that acknowledges both the reel stars and episodes in the past year’s TV programming and the real life caregivers who appear on TV.

With Emmy season just around the corner (the annual Emmy Awards will be broadcast on Sunday, September 22 on CBS), here are my picks for shows and TV champions which put the spotlight on caregiving in America:

 

“Reel Life” CARE-Y Awards – Playing a Caregiver on TV

 

Best Caregiving Sons – Pete Campbell – Mad Men and Jack Donaghy – 30 Rock

Reflecting the increase in men as primary caregivers (42 percent according to the latest Pew Research report),  we award a a tie to Mad Men’s Pete Campbell (played by Vincent Kartheiser) and 30 Rock’s Jack Donaghy (play by Alec Baldwin). Both men have tense, testy relationships with their disapproving mothers yet step in to care for mom when needed.

Mad Men's Pete and Dorothy Campbell and male nurse Manolo

Mad Men’s Pete and Dorothy Campbell and male nurse Manolo

In Mad Men, a recently separated Pete takes on the primary caregiving role for his bitingly critical mother Dorothy (played by Channing Chase). She has progressive signs of Alzheimer’s and Pete secures a male nurse, Manolo, for her 24/7 care.

One poignant moment during this AMC period drama set in the late 60s is when Bobby Kennedy is shot. Dorothy wakes Pete to tell him but he responds that President Kennedy was shot years ago and she is confused. The reality is that although dementia sufferers may live in the past, they still have moments of clarity and this was one of them.

In the season finale we learn that Pete’s mother may be a victim of fraud and foul play as Pete is told his mother fell overboard while on a cruise with her male nurse turned Latin lover.  This episode is all about loss: Dorothy losing her memory, Pete losing his mother’s love to a male gigolo and finally realizing she may be gone forever as he learns his mother is lost at sea.

Watch a clip of Pete and Dorothy here

30 Rock's Jack Donaghy and mom Colleen take a last ride

30 Rock’s Jack Donaghy and mom Colleen take a last ride

In the dark, wry comedy known as 30 Rock Elaine Stritch (cabaret and comedy veteran whose gravel-voice and deadpan humor is pitch perfect here) has played Jack’s fearsome, harpy mother, Colleen Donaghy, for seven seasons, earning an Emmy in 2004 for her guest appearances.  Jack describes his mother as “87 years old which is 14 in demon years.”

In this last season of the show, Colleen uncharacteristically tells Jack she only wants him to be happy and then promptly has a heart attack in the New York City hansom cab on their way to yet another hospital visit. Jack finally realizes beneath the fights and frustration and trips to the hospital was true love – dark, twisted love – from the only woman who could foil his oversized ego and make him a caring human.

Watch Jack and Colleen’s last ride here

Best Episode Featuring a Caregiver’s Challenge – Frank Reagan – Blue Bloods

The Reagans of Blue Bloods: Henry, Frank, Erin

The Reagans of Blue Bloods: Henry, Frank, Erin

In the CBS drama, Blue Bloods, Tom Selleck plays Frank Reagan, the patriarch of an Irish-American family of law enforcement officers in New York City. In this season’s episode, Greener Grass, Frank struggles with his live-in father, Henry’s (played by Len Cariou) diminished driving skills – one of the toughest conversations caregivers face with an older parent. After several unexplained driving accidents and fender benders, Frank’s attempt to talk to his dad about no longer driving goes horribly wrong leaving Frank frustrated and his father angry and fearful.  Ultimately, Erin (played by Bridget Moynahan) talks to both her father and her grandfather and a surprising solution is found.

Watch the driving conversation between Erin, Henry and Frank here

 

Best Special Needs Caregiver – Kristina Braverman – Parenthood

Parenthood's Kristina and son Max

Parenthood’s Kristina and son Max

NBC’s Parenthood has featured a storyline since its first season about a young son, Max (played by Max Burkholder) with Asperger’s syndrome, an autism spectrum disorder characterized by significant difficulties in social interaction and nonverbal communication. His caregiving mom, Kristina, played by Monica Potter (who also was featured in the PBS caregiving documentary It’s Your Turn), plays a cancer survivor and in real life was caregiver to her father.

In this season’s episode, I’ll Be Right Here, Max with the encouragement of his mom who cannot be there because of a cancer treatment so her sister is her back-up, stands on stage before his entire junior high school and bravely talks about his condition for the first time.

Watch Max’s brave speech in front of his fellow students

 

Best Caring for a Veteran – Special Agent Leroy Jethro Gibbs – NCIS

Special Agent Gibbs and marine with PTSD on NCIS

Special Agent Gibbs and marine with PTSD on NCIS

Sometimes caregiving is provided by a sibling or a friend. In one of the highest rated episodes of the top-rated CBS crime drama, NCIS deals with an Iraqi war veteran with post-traumatic stress disorder (PTSD).  The steely agent with the sensitive side is Leroy Jethro Gibbs (played by star and producer Mark Harmon), who  in a two-episode story this season called Shell Shock, helps Marine Capt. Joe Westcott (played by Brad Beyer) retrace his steps to a horrible Middle East incident which helps solve a murder stateside.  During the episode it is former Marine Gibbs who understands Westcott’s pain and also helps Westcott’s father and brother understand the challenges of dealing with the invisible wounds of war.

Watch Mark Harmon and Pauly Perrette in an NCIS PSA on PTSD

 

Best Caregivers of Those with Mental Illness Lifetime’s Call Me Crazy – A Five Film

Lifetime's cast of Call Me Crazy - A Five Film

Lifetime’s cast of Call Me Crazy – A Five Film

Last year Lifetime presented the groundbreaking A Five Film production featuring well-known directors and actors in stories of breast cancer. This year they put the spotlight on the mental health. The National Institute of Mental Health reports one in four U.S. adults have a diagnosable mental disorder yet the stigma of mental illness forces patients and their family caregivers into the shadows.

This two-hour program of five inter-locking stories, Call Me CrazyA Five Film starred Jennifer Hudson, Lea Thompson (real life caregiver to her mom with Alzheimer’s), Octavia Spencer and Melanie Griffith in short stories directed by Ashley Judd, Bryce Dallas Howard and Bonnie Hunt. The emotionally moving stories show us the real drama behind being a caregiver of a loved one battling bi-polar disorder, schizophrenia and PTSD.

Watch the promo for Call Me Crazy

 

Best End-of-Life Caregiving ConversationMeredith Grey – Grey’s Anatomy

Meredith and McDreamy talk end of life on Grey's Anatomy

Meredith and McDreamy talk end of life on Grey’s Anatomy

For nine years Grey’s Anatomy has featured two ongoing storylines about Alzheimer’s disease which affects 5.4 million Americans.  Meredith Grey (played by Ellen Pompeo) lost her mom to the disease and was tested to find out if she carries the “Alzheimer’s genetic marker” in this season’s The More You Genome episode.

In its quirky drama-comedy style of writing, the 30-something Grey talks to her husband Derek Shepherd (played by “McDreamy” Patrick Dempsey real-life caregiver to his mom who battled ovarian cancer) and her best friend Cristina Yang (played by Sandra Oh) about her end-of-life wishes once she starts to experience memory loss.

Watch McDreamy and Meredith talk “end of life wishes” here

 

 

Best Caregiving “Reality” Show – Ruth and Erica – WIGS Channel on YouTube

YouTube's Ruth and Erica

YouTube’s Ruth and Erica

Not all the best programming is on traditional TV networks or even cable as this year’s Emmy nods to Netflix original series such as House of Cards demonstrates.  We follow suit by giving an award to Ruth and Erica, a 13-episode series on the WIGS drama channel on YouTube starring TV stars Maura Tierney (The Good Wife, ER) as daughter  Erica and Lois Smith (True Blood) as mom Ruth.

A cast of TV veterans, including Steven Weber, Michael C. Hall and Jane Kaczmarek are featured throughout the series as Erica struggles to be a caregiver for her parents – feisty, independent Ruth and her Alzheimer’s stricken father Harry, played by Philip Baker Hall (Modern Family). Neither will admit their frailty and increasing needs as they age. It is stark reality wrapped up in brilliant dramatic acting that is our choice for award-winning online viewing.

Watch Ruth and Erika here

 

Our Caregiving Champions Hall of Fame – the Showrunners

This year, I wanted to give special recognition to the creators and showrunners of some of our best TV programming who have integrated a caregiving storyline into their shows.  These champions have not just done lip service or a “fly by” on the challenges of caregivers – they have made it a central part of their show’s story.  Here is my shout-out to those who are delivering TV to help not only entertain us but to educate us.

Shonda Rhimes – Grey’s Anatomy

Shonda Rhimes

She is the queen of the night at ABC when it comes to creating “must watch” TV these days with her debut of Grey’s Anatomy nine seasons ago followed by Private Practice and the watercooler/Twitter following phenomenon of her “gladiators” on Scandal.  It is her dedication to the Alzheimer’s storyline on the long-running Grey’s Anatomy which places her in my hall of fame.  Starting with the struggle of Meredith Grey (played by Ellen Pompeo) and her mom, Ellis (played by real-life Alzheimer’s Association champion Kate Burton who also appears on Scandal) to Dr. Richard Webber (James Pickens, Jr.) who cared for a wife, Adele (played with brilliance by Loretta Devine) with early on-set Alzheimer’s to the latest season where Meredith decides to be tested to see if she carried the Alzheimer’s genetic marker and has to have the “end of life wishes” talk with her husband, Derek “McDreamy” Shepherd (played by Patrick Dempsey), Rhimes and her writing team have never waivered from showing us the daily struggle and challenge for those with dementia and the toll it takes on their family caregivers.

Jason Katims – Parenthood

Jason Katims Parenthood

Jason Katims has been the driver of Parenthood  since its debut in 2010 and from the beginning he focused one of his story lines on the Braverman family coping with their special needs child, Max, who has Asperger’s syndrome.  Katims knows the role of special needs father well.  His son lives with autism making Katims one of the 17 million Americans who care for a special needs child.  We see the challenges in the family dynamic – mother, father, sister, aunt and the bravery of a son trying to be normal and how difficult that daily struggle is making viewers more aware and more compassionate.

 

 

 

Aaron Sorkin – The West Wing

aaron sorkinAlthough the Emmy-winning The West Wing has not been on NBC since 2006, the series can still be viewed on Netflix and has a cult following on Twitter with several of the show’s main characters tweeting about current world and political events (not connected to the original show’s writing team but fan-based). I give a shout out to head writer and executive producer, Aaron Sorkin, who not only created some of the best TV programming ever but gave his main character, President Josiah Bartlett (played flawlessly by Martin Sheen), multiple sclerosis, a degenerative, non-curable autoimmune disease that affects more than 2 million people worldwide.  We watch how someone on the world stage deals with such a weighty secret with the help of his loving caregiver, wife Dr. Abigail Bartlett (played by the brilliant Stockard Channing). Sorkin blends disease, dignity, denial, defiance and duty into an ongoing storyline which shows us the vulnerabilities and strength in dealing with a chronic illness.

Special Recognition Awards

Best PSA Campaign

Royal-Pains castMark Feuerstein (“Hank Lawson”), Ben Shenkman (“Jeremiah Sacani”), and Paulo Costanzo (“Evan Roth Lawson”) of the USA Network drama Royal Pains, which airs in the summer months teamed up for a PSA encouraging all to participate in the Alzheimer’s Association’s “Longest Day” Campaign on June 21 to honor the strength, endurance, and passion of those facing Alzheimer’s every day.

 

 

 

Best Advertising:  Depends starring Harry Hamlin and Lisa Rinna

Lisa Rinna, Harry Hamlin SilhouettesKudos to gorgeous real-life TV star couple for starring in a TV commercial about absorbent briefs showing that incontinence issues can hit even when you still look great on the outside.

 

 

 

Kudos to Programs That Show Ability Rather Than Disability, Disease or Disorder:

the-good-wife-michael-j-fox_320The wonderful guest actor Michael J.Fox on CBS’s The Good Wife who plays a cunning lawyer with Parkinson’s disease – which Fox lives with in real life. MJF will star in his own show, The Michael J. Fox Show, on NBC this fall.

 

 

 

auggie_piper_perabo_covert_affairsShowing that blind doesn’t keep you from spy work – Christopher Gorham plays Augie who is a blind CIA analyst often saving Annie (Piper Perabo) on USA Network’s Covert Affairs.

 

 

 

 

Glee08Artie (played by Kevin McHale) is a singer/guitarist on Fox’s Glee who just happens to also be a paraplegic in a wheelchair.

 

 

 

 

PerceptionEric McCormack plays brilliant but paranoid schizophrenic neuroscientist Dr. Daniel Pierce on the new TNT series Perception.

 

 

 

 

 

 

 

 

“Real Life” CARE-Y Awards – Caregivers on TV

 

Best Caregiver of a Morning Show Host – Sally Ann Roberts, sister to Robin, co-host of Good Morning America

Robin Roberts and Sally AnnRobin Roberts, co-host of ABC’s Good Morning America who beat breast cancer five year ago was hit again – this time with MDS (myelodysplastic syndrome), a type of pre-leukemia that attacks the blood and bone marrow.  In an emotional message, she told viewers she would be undergoing a life-saving bone marrow transplant and that the donor would be her sister, Sally Ann.  Both Robin and Sally Ann talk about the importance of organ donation and encourage everyone to sign up for a donor registry such as bethematch.org.  The transplant took place on September 20 and I wish Robin and Sally Ann swift, successful recoveries.

 

 

Best Caregivers Who Are Lead Actors in a Drama Series – Peter Gallagher and Bryan Cranston 

Best ActorsThis is a tie between Peter Gallagher, who plays Arthur Campbell, head of the CIA on Covert Affairs on USA Network and Bryan Cranston who plays Walter White on AMC’s Breaking Bad.  Both Peter and Bryan cared for mothers who suffered from Alzheimer’s disease and are Alzheimer’s Association Champions. (See Caregiving Club’s interview with Peter Gallagher from the Alzheimer’s Association A Night at Sardi’s event).

 

Best Caregiver Who Is a Lead Actresses in a Drama SeriesMadeleine Stowe

Madeleine Stowe dreamstime_m_21785006 (2)Madeline Stowe, who plays evil Victoria Grayson on ABC’s Revenge was a young caregiver to her father who suffered from multiple sclerosis.

 

 

 

 

 

 

 

Best Caregiver Who Is a Talk Show Host – Katie Couric

katie_couricHeading into season two of her highly rated afternoon talk show for ABC, The Katie Show, longtime news anchor, Katie Couric, cared for her husband who died of colon cancer.  Her sister also passed away from pancreatic cancer.  Couric has been a tireless advocate for colon cancer screenings and education and supports the Entertainment Industry Foundation’s (EIF) Stand Up 2 Cancer campaign.

My special thanks to the writers, directors and producers who help shed more light on caregiving in their programming.  And, special thanks to those real-life caregivers who help the 65 million caregivers across the country know they are not alone when these high-profile celebrities talk of their own caregiving experiences.

 

 

If you have a nomination for a reel or real life caregiver, send me your suggestions at info@caregivingclub.com.  

90-Year-Old Billionaire David Murdock Doles Out Healthy Aging Advice

Versions of my following interview with David Murdock have appeared on Forbes.com and PBS NextAvenue.org.

David Murdock horsebackridingDavid Murdock, CEO of Dole Foods is a billionaire, a titan of business but he is most interested in healthy living to help us live longer and better. His reasons are personal. In the 1980s Murdock lost his beloved wife Gabriele to ovarian cancer at age 43, his second great loss of his life after watching his mother succumb to the same disease at age 42 when Murdock was then an impressionable young man of only 17.  As with many successful entrepreneurs and business innovators I have interviewed, Murdock has turned his private pain into a passion to find a cure for the chronic illnesses that shorten our lives.

David Murdock, at age 90, has the look and vitality of a man at least 25 years younger and believes his healthy practices will help him reach age 125.  He attributes his longevity and vigor to the healthy lifestyle habits adopted while searching for a cure for the cancer that eventually took his wife.

Putting His Money Where His Heart Is

Back in the early 1980s, Murdock bought Castle & Cooke, a leading real estate development company of which Dole was part. Since then he has made Dole Foods Company, the world’s largest producer of fruits and vegetables.  According to Bloomberg BusinessWeek,  Murdock’s net worth is $2.3 billion of which he has poured more than $500 million into creating  the North Carolina Research Campus where eight universities participate in research to find the health benefits of plants that can lead to longevity and aid in avoiding the wrath of diseases like cancer.

Through his acquisition of Dole, Murdock began focusing on the benefits of a mostly vegetarian diet to prevent chronic illness including diabetes, heart disease and especially cancer.  In 2006 Murdock added to his healthy living empire and opened the California Health & Longevity Institute (CHLI) in Westlake Village, California.  About a 40-minute drive from downtown Los Angeles, guests, including corporate executive groups, stay at the luxurious Four Seasons hotel housed in the same building as CHLI to receive services at the state-of-the-art medical suite, spa and nutrition demonstration kitchen.

Following Murdock offers some insights on caregiving and the business of aging well:

Good Nutrition dreamstime_xs_817857 (2)

Healthy Eating

It’s never too late to adopt healthy nutritional habits, according to Murdock who created his own new diet and discipline in his 60s.  While Murdock eats approximately 20 servings of fruits and veggies every day – he blends most into 2-3 smoothies which includes the food’s outer skin.  Avoiding vitamins and supplements, he advises that anything the sun touches including banana peels and orange rinds should not be tossed but blended in for full nutritional value.

In addition to an abundance of fruits and veggies, Murdock includes seafood, beans, legumes and egg whites into his diet to get an adequate balance of protein with his carbohydrates. And he avoids fatty empty calories – in an interview with the New York Times, when the waiter delivered butter to the table, he pushed it back saying, “Please take death off the table.”

“We take care of our vehicles – we’re careful to put the proper kind of gasoline in the tank, put air in the tires, change the windshield wiper blades and brakes; but how many of us pay that much attention to what we put into our own bodies?” says Murdock.  “We have developed a culture in which we eat with our taste buds – not our brains. It is never too late to change the way you eat and once you do, your body will thank you with a longer and healthier life.”

Walking shoes dreamstime_m_14304581 (2)

Exercise

Murdock advises that exercise should not be viewed as “optional” but should be a daily routine just like brushing your teeth.  He advises on three key elements of an exercise program:

1)      Don’t make it routine – mix it up.  One day Murdock rides horses, another he does yoga and strength training.

2)      Get outside.  He believes that being a gym rat becomes boring and is one of the reasons people do not stick with daily exercise.

3)      Make it fun.  When I first met David Murdock, he spoke at a UCLA Longevity Institute Conference I  attended.  He captivated me with his story about caring for his wife but I was also fascinated by his comments to use “fun” to engage society in consistent exercise.

Murdock’s example was from the Volkswagen Fun Theory program where metro train station stairs in Sweden were transformed overnight into piano keys – each step corresponding to the keys on a piano with actual sounds.  Miraculously where the day before almost 100 percent of travelers took the escalator, once piano stairs were installed, almost everyone was curious enough to take the stairs.  Watch Piano Stairs on YouTube.

Caregiving Advice

Murdock knows firsthand the stress and physical, emotional toll caregiving can take.  His advice is much like his approach to business and healthy living.

“Don’t give up,” urges Murdock.  “Exercising and eating properly will build your physical and mental strength to endure a stressful situation.”

©2013 Sherri Snelling

Happy Birthday to a Caregiving Pioneer – Rosalynn Carter

Photo: The Carter Center

Photo: The Carter Center

She said it first and she said it best:  “There are only four kinds of people in the world:  those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

As one of the pioneers behind a growing caregiving movement in this country, Mrs. Carter became the first public figure to truly champion the cause of those 65 million Americans today caring for loved ones who are older, chronically ill, disabled, have special needs or are challenged by mental illness.

I talked with former First Lady Rosalynn Carter about the strides made for caregivers over the last few decades and what her hope is for the future.  They also talked about her caregiving roles – providing comfort and care to multiple family members over the years.  As Mrs. Carter gets ready to celebrate her 86th birthday on August 18, Sherri asked her to share her wish list for caregivers in this country.

A Backwards Glance

“My work with caregiving grew out of my mental health work,” says Mrs. Carter. “I had seen so many families burdened with caregiving for those with mental health issues.  When we convened a meeting in the 1980s to discuss caregiving issues, it quickly spread from there.”  She had reached out to organizations such as the American Heart Association, the American Lung Association, the American Medical Association and other groups that could help both family caregivers and health care professionals.  Amazingly all these groups agreed that caregiving was critical to the health of the patient but no one had any focused caregiving programs.

That was then.  Over the last three decades, Mrs. Carter is encouraged by the public support for caregivers.  She points to essential government programs such as the National Family Caregiver Support Program, authorized as part of the Older Americans Act, and administered through the Administration on Aging, it provides grants to states to help caregivers keep loved ones at home as long as possible.  She also believes programs such as the Lifespan Respite Care Act are critical to helping caregivers with a huge issue identified back in those early 1980s meetings:  burn-out.  To avoid burn-out, caregivers today can find respite services, training and other information through the ARCH National Respite Network and Resource Center.

“Of course we always want more but it is wonderful to see how this issue [of caregiving] has become a major, major issue,” says Mrs. Carter.

She is also proud of the fact that the program she founded and which bears her name, the Rosalynn Carter Institute (RCI) for Caregiving at Georgia Southwestern State University is the “only university with a caregiving program.”  In talking with Dr. Leisa Easom, executive director of RCI, the Institute is focused on taking evidence-based research to understand caregiver needs and then translating that research into programs.  Since 1987, RCI has been a leading advocacy, education, research and service unit for caregivers at the university and beyond the campus.  Working with numerous national organizations and community-based services across the country, RCI recently launched a satellite program in Korea and will continue to expand its caregiving expertise and support internationally.

While Mrs. Carter is proud to have founded the first university-based caregiving program, she has only started.  Her hope is that the global aging crisis will encourage even more sectors, including government, academia and U.S. businesses, to understand the importance of focusing on the caregivers and the services and support they need.

Birthday Wishes for Caregivers

Mrs. Carter has several wishes for caregivers that she would like to see come true over the next several years.  They include caregiver education and support to deal with grief as well as guilt.  She feels coping with these twin demons can help caregivers on their path to self-care which is so critical for dealing with the overall long term care issues in this country.

“The first thing we focused on back in the 1980s was caring for the caregivers,” she recalls.  “I spoke at a caregiving event back then and audience members came up to me afterwards crying saying that this was the first time someone understood what they were going through.”  She also advises, “People don’t want to admit that they are caregivers, they feel it is just their responsibility to care for a mother or a grandmother,” says Mrs. Carter.  Beyond self-identifying as a caregiver she also believes, “They also have to recognize the need for help and be willing to receive help.”   She realizes this is easier said than done.  I asked her if she had identified herself as a caregiver through the years and she laughed, “No, I didn’t realize I was a caregiver until I got involved in this work.”

She also hopes for continued understanding and acceptance of those with mental health issues, with a move toward eliminating the stigma that surrounds these individuals and their family caregivers. While she believes there is more attention to issues such as bi-polar disorder, schizophrenia, Alzheimer’s disease and post-traumatic stress disorder (PTSD), we need to move beyond awareness to acceptance and she feels that we are not there yet.

The programs that support the participation that Dr. Easom and RCI had in Averting the Caregiving Crisis, a report issued this spring by several caregiving thought leader organizations that identifies six key caregiving strategies are also part of Mrs. Carter’s hope for the future of caregiving:  1) Educating the public; 2) Understanding needs through evidence-based research; 3) Translating that research into programs; 4) Leading policy change around long term care; 5) Investing in sustainability for programs; 6) Creating more leadership around caregiving through public and private partnerships.

Her passion and advocacy come from a personal place and a lifetime dedicated to understanding the challenges – emotional, physical and financial – that accompany caring for a loved one.  Rosalynn was only 12 years old when her father was diagnosed with terminal leukemia, a battle he lost just three months later.  As the eldest daughter, she helped care for her ailing father and after his death 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.  She relates how all of President Carter’s siblings succumbed to cancer and he also lost his mother to breast cancer.  Rosalynn helped care for several of these in-laws and also cared for her mother for many years until she passed in 2000 at age 94.  In 2002, she was called to care again for her younger brother who had a stroke.  He was living all alone in Ohio so he moved closer to Rosalynn in Plains, Georgia, so she could care for him.

“I have seen firsthand why it is important for families to have places to go to for help – it is so crucial.”

As Mrs. Carter gets ready to blow out the candles on her birthday cake, she is looking forward to the fly-fishing vacation with former President Carter he has promised her.  On August 18th we celebrate a true caregiving champion and let us wish that the spotlight Mrs. Carter has put on caregivers never dims.  Happy Birthday Mrs. Carter!

Carrying On After Caring for Farrah

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.

Rizzoli & Isles Creator Campaigns to Solve the Mystery of Alzheimer’s

Rizzoli and IslesYou may not immediately recognize her name, unless you are one of the millions of readers worldwide who have made Tess Gerritsen’s novels about female buddy crime solvers, detective Jane Rizzoli and chief medical examiner Dr. Maura Isles of the Boston police department, international best sellers and a top-rated TV drama.

When I spoke to Tess last week, it is not the fourth season premiere of Rizzoli & Isles on TNT or her latest novel, Last to Die, which is on her mind. It is the prevalence of Alzheimer’s disease (AD) and her new philanthropic campaign, which kicks off this month and ends on July 23rd offering donors an entertaining plot twist, that is top-of-mind for this former physician turned award-winning author who also happened to be a Sandwich Generation caregiver.

Appropriately named, Tess Gerritsen’s War on Alzheimer’s, the campaign asks for $5 donations in exchange for a chance to win prizes including naming one of the characters in the new Rizzoli and Isles medical and crime thriller novel she is currently working on to be published next year.  Gerritsen has pledged to match all donations up to $25,000 of which 100 percent of the funds raised will benefit the Scripps Research Institute in La Jolla, California – one of the largest independent nonprofit organizations for biomedical research with a leading four-star rating from Charity Navigator.

Author Tess Gerritsen

Author Tess Gerritsen

It was in the early ‘90s that Gerritsen felt the full-blown drama of Alzheimer’s in her family.  Her father was working for a large defense contractor in San Diego, California but was experiencing trouble with math and numbers that had been his forte throughout his career. Simultaneously, he spent nights as a popular chef in a family-run restaurant which Gerritsen explained as the “typical Chinese immigrant mentality of working two jobs to care for your family.” When his performance in his daytime defense job became unmanageable, he was let go and focused on his passion for cooking.

“My dad’s cooking was magic in the kitchen,” remembers Gerritsen.  “But eventually over the years his personality changed and his ability to remember recipes failed.  He became paranoid and thought people were stealing from him when often he was just misplacing things.”

He was officially diagnosed with Alzheimer’s disease in his mid 60s which Gerritsen says, “is so young” given the statistics for AD.  Early on-set or younger on-set Alzheimer’s accounts for approximately 5 percent of all Alzheimer’s patients – about 200,000 Americans who are in their 40s, 50s and 60s – whereas one in every two Americans will develop dementia after age 85.

Gerritsen, who resides with her husband and children in Maine, became one of the eight million long-distance caregivers for her divorced dad yet she credits her aunt, her father’s sister, with managing his daily care. Both women consoled each other as the father and brother they loved eventually became unable to speak and lost many of the joys in life, such as cooking and even eating.

“It really hit me when I lost my dad in 2003 how impactful this disease can be,” states Gerritsen.  As I learned more, including one in every three seniors will die with Alzheimer’s disease, I decided we need to solve the mystery of treating this disease before it overtakes us.”

Gerritsen is particularly troubled by the lack of funding through the National Institutes of Health (NIH) where annual budgets authorized by Congress for Alzheimer’s, which now ranks #6 among diseases on the top 10 list of causes of death in the U.S. , is less than 1/10th  the spending on other health issues such as heart disease, cancer and AIDS.

“Alzheimer’s is literally killing us and the only way to fight this ‘crime’ is through a groundswell of people who continue to raise their voices and funds to ensure it gets the attention it deserves,” says Gerritsen with the passion evident in her voice.

Gerritsen created her famous characters, Rizzoli and Isles, as two women with very different backgrounds and lifestyles who work together toward a common goal – solving crime.  She believes pop culture has a place in capturing attention for social causes and her Alzheimer’s campaign is her contribution to have different people work together to help eradicate a known killer.

Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, blends pop culture with caregiving expert advice, information, resources and self-care tips.

The Men of Caregiving

Male caregivers rock tshirtWe think of the typical caregiver being a boomer-age woman caring for her older parents yet according to the National Alliance for Caregiving, men make up 34 percent of the 65 million caregivers across the country.

And those are men who are in primary caregiving roles – it does not represent the husbands, brothers and friends who are providing the support network for other caregivers. Whether it’s giving a sister a break like Patrick Dempsey did for his sisters who cared for their mom with ovarian cancer or providing the much-needed comfort and care for a caregiving wife like Seth Rogen does for his wife Lauren Miller who cares for her mom with Alzheimer’s disease, men are essential to the caregiving nation we are becoming.

This article celebrates our men who are caregivers – heroes all.  Following is a list of men you might know who have all been on the caregiving journey.

To the men of caregiving – we salute you!

Sons caring for parents

Baldwin-BrothersThe Baldwin Brothers – Alec, William, Stephen and Daniel comprise the famous Baldwin brothers – actors and activists all. Yet in their hearts they are mama’s boys – helping their two sisters care for their mom, Carol, who successfully battled breast cancer. Carol is one of the 2.9 million breast cancer survivors in the U.S. according to the American Cancer Society.  She formed the Carol M. Baldwin Breast Cancer Research Fund where all four sons have been actively involved in helping to raise more than $3 million for medical research grants to find a cure.

Patrick Dempsey dreamstime_m_20160433 (2)Patrick Dempsey –On TV he plays “Dr. McDreamy” the brain surgeon eye candy on Grey’s Anatomy. In real life, Patrick has helped care for his mom, Amanda, as she survived two bouts of Stage IV ovarian cancer.  Providing the much-needed support for his two older sisters, Patrick commuted between his home base with his wife and children in Los Angeles cross country to his hometown in Maine where his mom and sisters live.  According to the National Cancer Institute, about 60-80 percent of ovarian cancer patients face a recurrence of the disease. Because of the stealth nature of ovarian cancer, Patrick said in an interview with Web MD, “Be relentless, question information, and double check it. Get a second opinion. Do your research.”

Seth Rogen dreamstime_xs_23106908 (2)Seth Rogen – Star of movies such as Knocked Up and The 40-Year-Old Virgin, comedic actor Seth Rogen is part of the caregiving team along with his wife who care for her mother with Alzheimer’s disease.  Diagnosed at age 55, Seth was shocked at how early Alzheimer’s can strike a family and how little people of his generation know about the disease.  Seth and his wife are two of the 15 million Americans who care for someone with dementia. This star of The Guilt Trip with Barbra Streisand (whose mom also had Alzheimer’s), Rogen realized Alzheimer’s is no laughing matter.  He is now an advocate for the Alzheimer’s Association and has created, along with wife Lauren, the annual “Hilary for Charity” comedy improv event with fellow comedians such as Paul Rudd and Steve Carroll to raise funds and awareness among younger generations for the disease.

 

Dwayne Johnson dreamstime_xs_23274249 (2)Dwayne “The Rock” Johnson – Playing superheroes, military warriors and loving dads on film and starring in the latest Fast and Furious movie, former professional wrestler Dwayne Johnson has also cared for a mom through lung cancer.  In 2010, Dwayne announced his mom had beaten stage 3 lung cancer where she had undergone chemotherapy and radiation. Dwayne told Jay Leno on his late night talk show, “She fought like a warrior.”  Just this summer. Dwayne purchased a white Cadillac for his mom, who had her car repossessed when he was growing up and she was a struggling single mom, in celebration of her ongoing cancer victory and as a thank you for always being there to support his dreams.

Rob Lowe dreamstime_m_19870699 (2)Rob Lowe – In the ‘80s he was the heartthrob member of the famous Brat Pack and more recently his career has flourished in TV as a star in both dramas and sitcoms on The West Wing, Parks & Recreation and a recent campy turn in the HBO feature on Liberace, Behind the Candelabra starring Michael Douglas and Matt Damon. Rob has also been a caregiver for both is mother and father who divorced when he was still in his teens. He lost his mom (and his grandmother and great-grandmother) to breast cancer and helped his dad through a successful battle with lymphoma. An advocate for both diseases, Rob has been the Lee National Denim Day ambassador for breast cancer and filmed a PSA TV spot for lymphoma about the risk of infection and other side effects of chemotherapy.

Joey McIntyre dreamstime_m_22662550 (2)Joey McIntyre – The ‘90s boy bander is out on the road with his Boston bandmates for a nostalgic tour for the older yet sexier NKOTB (formerly known as New Kids On the Block).  As one of nine kids growing up in Needham, Mass., Joey has also stepped into the spotlight as advocate and caregiver for his mom who was diagnosed with Alzheimer’s disease.  When I interviewed Joey at the Alzheimer’s Association A Night At Sardi’s gala event (watch the interview with Joey here), he told me, ““It’s a process and it’s different for everybody . . . it is bittersweet because with my mom, she is still there, she’s got the one liners and she is so funny and she is still a performer but she doesn’t remember five minutes ago . . . it’s tough for the families.”

Bryan Cranston, Peter Gallagher, Victor GarberBryan Cranston (AMC’s Breaking Bad), Victor Garber (TV’s Alias, Titanic) and Peter Gallagher (USA Network’s Covert Affairs) – These three sons and TV/film stars have all cared for moms with Alzheimer’s disease.  Peter, who cared for his mom for the more than 20 years she lived with the disease, shared with me at an Alzheimer’s Association event, “An Alzheimer’s diagnosis can be as devastating to the caregiver as to the person diagnosed. Doing it yourself, I don’t know how long you are going to last . . . [but] the more you understand about the disease the better.”  He also said that this disease can be “embarrassing” and “terrifying” but that is why the Alzheimer’s Association is a great place to start to find the help and support needed. (watch my full interview with Peter here).

Henry WinklerHenry Winkler – Even though it’s been 40 years since Happy Days appeared on TV screens, the cool biker with a heart, “The Fonz” is an enduring pop culture icon.  The actor who brought the Fonz to life is also a caregiver.  Henry serves as the ambassador for the Open Arms: Raising Awareness of Upper Limb Spasticity educational campaign with a mission to help those who are impacted by upper limb spasticity and do not know where to turn for help.  Personally impacted by the issue, Henry’s mother suffered a stroke and for 10 years Henry helped care for her she suffered from upper limb spasticity.

Husbands caring for wives

valerie harper and tony cacciottiTony Cacciotti – You may not know his name but you know his wife as “Rhoda” from the famous ‘70s TV show The Mary Tyler Moore Show. Husband of TV actress Valerie Harper who was recently diagnosed with terminal brain cancer, Harper offered in interviews how “bereft” her husband was and that he was having a tough time handling the diagnosis.  At first, he hid the diagnosis from her until they received a second opinion.  Since then the couple are living life fully each day.  Harper has said, “We’re all terminal – it’s just a matter of when and where and how.”

Brosnan, Short, Wilder, MurdockPierce Brosnan (Bond movies, Remington Steele), Martin Short  (Saturday Night Live), Gene Wilder (Willa Wonka and the Chocolate Factory, Young Frankenstein) and David Murdock (billionaire owner of Dole Foods) – All four lost wives to ovarian cancer, known as the silent disease because symptoms are often masquerading as other health issues.  Brosnan helped wife Cassandra battle the disease for years until she succumbed at age 42. Martin Short lost wife Nancy Dolman to the disease.  Gene Wilder and David Murdock took the grief of their loss and turned it into centers for helping others and finding a cure.  Wilder, whose wife was comedian/actress Gilda Radner, sought various treatments for her cancer for three years.  In her memory he co-founded Gilda’s Club, now part of the Cancer Support Community. Murdock lost wife Gabrielle at age 43 and invested $500 million in personal wealth to create the leading research institute, North Carolina Research Campus, dedicated to using plant-based solutions to prevent chronic illness such as cancer.

paul-mccartney1Paul McCartney – As one of the famous Beatles, he sang, “Will you still love me when I’m 64?” When it came to love, Paul’s muse and partner for 29 years was beloved wife Linda.  He would have loved her beyond age 64 if she had survived.  Sadly, he lost her to breast cancer when she was only 56. In an interview with the Daily Mail, McCartney admitted to needing help with the loss, “I got a counsellor because I knew that I would need some help. He was great, particularly in helping me get rid of my guilt [about wishing I'd been] perfect all the time.”

mitt romneyMitt Romney – As a 2012 presidential candidate, former governor and businessman, Romney attributes much of his success in life to his wife Ann.  She gracefully lives with multiple sclerosis, an autoimmune disease affecting 2 million people worldwide.

U.S. Open - Round OnePhil Mickelson – The three-times U.S. Masters Golf Tournament champ became a caregiver in 2009 when his wife, Amy, was diagnosed with breast cancer.  He suspended his playing career to help his wife through chemotherapy and to help care for their young children.

Hal Holbrook, Dixie Carter dreamstime_xs_18921771 (2)Hal Holbrook – Film actor Holbrook (Lincoln, Water for Elephants, Into the Wild) cared for his actress wife Dixie Carter (Designing Women) through her battle with endometrial cancer, a fight she lost in 2010.

Facebook photoMichael Tucker – An early breakout role in Diner led to his best known starring role in TV’s L.A. Law where he appeared on the same screen with wife Jill Eikenberry. They are a great example of a caregiving team caring for Jill’s mom who has dementia.  Mike chronicled their caregiving journey in his humorous book, Family Meals.

Dads caring for special needs children

Montegna, Peete, GorhamJoe Montagena (Godfather Part III, TV’s Criminal Minds), Rodney Peete (NFL star quarterback),  Christopher Gorham (USA Network’s Covert Affairs)All three of these fathers have children on the autism spectrum disorder (ASD).  Joe’s daughter Mia, now in her 20s, was born prematurely and eventually was diagnosed with autism.  Rodney’s son, R.J., was diagnosed at age three and is now a teen.  He wrote a book about his struggles in coping with his son’s diagnosis, Not My Boy! A Father, A Son and One Family’s Journey with Autism and runs the non-profit organization, HollyRod Foundation, he and wife Holly Robinson Peete founded to help families facing Parkinson’s disease and autism. Christopher’s son was diagnosed a few years ago at age 9 with Asperger’s syndrome.  He has talked about getting outside help with everyday tasks such as grocery shopping and housecleaning so he and his wife can dedicate time to the therapies and interventions needed for their son while also caring for two other children.

colin farrellColin Farrell – Known for his bad boy behavior and mesmerizing film roles, Colin says his life changed when his oldest son was diagnosed with a rare genetic disorder known as Angelman syndrome.  Characterized by jerky movements, sleeping problems, developmental disability and seizures which can be treated, there is no cure for the disorder.  Colin has said in interviews when your child takes his first steps, you hold your breath but when your special needs child finally takes a step after being told he may never walk, “those first steps take you into a whole different realm.”

John McGinleyJohn C. McGinley –Best known for his starring role on TV’s Scrubs, he’s also starred in films such as Platoon, Wall Street  and most recently 42, John has a teen son with Down syndrome (DS).  A longtime advocate for DS organizations, he currently is on the board of the Global Down Syndrome Foundation.  One in every 691 births result in a child with DS and after age 40, DS adults have a 100 percent risk of Alzheimer’s disease as well.

Brothers caring for a sibling

Jamie foxxJamie Foxx – He’s an Oscar-winning star (Ray) and music artist but Jamie is most proud of his sister, DeOndra, who has not let her Down syndrome hold her back.  As an ambassador for the Global Down Syndrome Foundation, DeOndra has danced onstage with Denzel Washington and appeared with her famous brother in front of millions at the Grammys and even appeared in one of his music videos.  Caring for family comes naturally to Jamie – as he told Entertainment Tonight, “This little lady right here lives with me along with my other sister, along with my father and my mother. So, we’re one big happy family.”

Ashton Kutcher dreamstime_xs_21212521 (2)Ashton Kutcher –Starring on one of TV’s highest rated sitcoms, Two and a Half Men, Ashton is a loving twin brother to Michael who was born with cerebral palsy and cardiomyopathy requiring a heart transplant at age 13.  As the family anxiously waited for a donor heart, Ashton said he actually contemplated suicide just so he could save his twin brother’s life.  Michael told a People magazine reporter, “Ashton never left my side,” talking of his brother’s devotion. “He showed me the love one brother has for another.” Michael currently serves as a spokesperson for the Reaching for the Stars Foundation that helps children with cerebral palsy which his famous brother also supports.

Tommy Hilfiger dreamstime_m_16272164 (2)Tommy Hilfiger – Fashion designer Tommy has been a 22-year supporter of the Nancy Davis Foundation Race to Erase MS event mostly to raise awareness and funds for a disease his sister has lived with for more than 40 years.  His sister Dorothy, now 61, has lived with multiple sclerosis since her teens.  Her one-year-older brother, Tommy, one of nine children, told WebMD, “When you see someone’s life change as a result of a disease, it really hits home.”

Friends and Lovers

both-of-us-ryan-oneal-farrah-fawcettRyan O’Neal – He was the romantic star of the ‘70s movie Love Story in which he lost his love and soul mate (played by Ali MacGraw) to cancer.  But tragically film turned to reality when he cared for long-time love Farrah Fawcett as she battled bravely but lost her life to anal cancer.  He chronicled their love affair and those last three years trying new therapies and traveling to Germany for experimental treatments to find a cure for her cancer in his 2012 book, Both of Us: My Life with Farrah.