The Men of Caregiving

June 18, 2013 by Leave a Comment

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.

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The Show Must Go On for the Osmonds

June 1, 2013 by 1 Comment

Originally published on PBS Next Avenue by Sherri Snelling

They say lightning never strikes twice in the same place yet this is exactly what happened to Alan Osmond and his son David Osmond of the famous entertainment family.  This lightning came in two forms:  great musical and performing talent as well as a gift for songwriting but also something less glamorous:  a diagnosis of the autoimmune disease multiple sclerosis (MS).

Alan and David Osmond

Alan and David Osmond

The Show Goes On for the Osmonds

Growing up Osmond means you know how to be at the pinnacle of the entertainment world – you sing, you dance and no matter what the show must go on.  This was no problem for David Osmond, one of eight sons born to Alan, the oldest of the famous Osmond Brothers who shot to fame along with Donny, Merrill, Wayne and Jay in the 1960s-70s (Marie and Jimmy came later).  As a torchbearer for the Osmond dynasty, David, age 32, has a successful solo career, still performs as the lead singer for the Osmonds – Second Generation, is hosting a new TV music competition reality series and participated in the eighth season of American Idol.

But, imagine if one day you woke up and found you could not walk, you could not hold a guitar, you could not sing because the pain in your chest and paralysis in your body reached from your toes to your diaphragm making it hard to breathe.  This was what David Osmond faced in 2005 when he was diagnosed with multiple sclerosis (MS) and went from a promising entertainment career into a wheelchair.  Remarkably, it was the same diagnosis his father, Alan, had been given almost 20 years earlier when he was in his late 30s.  What makes this story so inspiring is that for the Osmond family, whose longevity in show business is legendary, both Alan and David are not only living with MS today, they are actually thriving.

Multiple sclerosis, which affects 2.5 million people worldwide, is an autoimmune disease that attacks the central nervous system and for which there is no cure.  Essentially, scars and lesions cause interference with the transmission of signals to the brain and spinal cord that then cause the unpredictable and often debilitating symptoms that MS patients experience such as numbness, tingling and searing pain in the extremities, periods of partial or full blindness, loss of sensory function such as taste or smell and even full paralysis.

While researchers feel there may be genetic predictors for MS (the National Multiple Sclerosis Society states that siblings or children of those with MS have a 1 in 40 risk of also having MS), there is no clear connection that one generation passes it to another.  What Alan did pass to his son David is a “can do” rather than a “can’t do” attitude towards living with MS.

“When I originally received the diagnosis, I had tested positive for West Nile Virus but some of the symptoms did not match up so they tested for MS and found I had the relapsing/remitting form of this disease which my doctors believe may have been dormant in my system but was triggered by the virus,” says David.  “I was in complete denial – I had grown up watching my dad battle MS and my symptoms were not really the same so I just could not believe it.”

There are four variations on the aggressiveness and progression of MS disease, Alan’s was the primary progressive type, a diagnosis only 15 percent of all MS patients receive.  With primary progressive there are no flare-ups or periods of remission such as with David’s type of MS – which means for Alan it is supposed to be a slow degeneration of the body’s functions.

Originally, David’s devastation took on the typical reaction people have when faced with a difficult diagnosis:  “Why me?”  He relates how one day while in a wheelchair he watched his brother playing on the floor with his kids and wondered to himself, “Will I ever have that?”  You can hear the emotion in his voice as he continues, “I’m almost embarrassed to admit that is how I felt because when I looked from my brother and nieces and nephews to my dad and realized, here is this man who has lived with this disease for 20 years and he has never complained, I realized life can go on and you can find ways around this disease just like my dad did.”

“I have a motto I live by – you have to be TUFF,” says Alan.  “It stands for: Target what you need to do; Understand everything you can about the challenge in front of you; Focus on how to live with or beat that challenge; Fight, Fight, Fight – you have to have the drive and desire to keep living and keep fighting for yourself and those around you.”

Family and Faith

Osmond father and son tackled MS the same way they approach the music business – all out or as Alan says “I may have MS but MS does not have me.”

“I was given a cortisone shot when I was first diagnosed in 1987,” says Alan, “and it just about killed me.  It was right then that I decided there has to be a better way and I started investigating alternative medicine that would not have the side effects of traditional drugs.”

Both Osmonds have found ways to deal with MS and overcome many obstacles and the dire prognosis of their physicians.  David was able to get up and out of his wheelchair with powerful steroid shots that helped him walk down the aisle with his beautiful bride, Valerie, a few years ago.  “I proposed to her from my wheelchair and she said, ‘Yes!’ so being able to walk down the aisle with her was something I just knew I had to do.”  He has not been back in his wheelchair since and the couple now has two beautiful daughters, ages one and three.

Valerie and David Osmond

Father and son embrace all-natural homeopathic remedies and David takes up to 50 all-natural supplements a day while Alan adds a daily dose of 2,000-5,000 IUs of Vitamin D; they believe in using essential oils, such as Frankincense, for aromatherapy and they follow a healthy diet based on gluten-free (wheat-based products) and casein-free (milk protein) foods with limited meat and other proteins.  The strict adherence to an all-natural diet which Alan blends into most of his meals has helped manage his MS symptoms and helped him lose 30 pounds.  Alan also enjoys hydro-exercise – the buoyancy of the water not only takes the pressure off of sometimes painful joints but also helps with balance while practicing movements.  In addition, both Alan and David avoid stimulants such as cigarettes, coffee or caffeinated sodas, which is part of their Church of Latter Day Saints faith, and they believe in the power of prayer and positive thinking.  If there is an Osmond prescription for helping to tame the symptoms of MS it is simply “family and faith.”

In fact, both Alan and David credit their wives, Suzanne and Valerie respectively, with the kind of unconditional love so essential in a spouse when someone is facing a chronic illness.  According to the National Health Institute Survey conducted by the Centers for Disease Control, 75 percent of marriages among those couples dealing with a chronic illness end in divorce – 50 percent higher than the overall national divorce rate.

“There is a good side to every challenge in life,” says David.  “Sometimes dealing with something like multiple sclerosis can make your marriage better, I know both my wife and I have learned more patience with each other through this journey and I absolutely would not be where I am at today in conquering MS without her.”

Suzanne and Alan Osmond

Alan agrees that it was Suzanne who helped him seek the alternative remedies which have him defying all the odds with his prognosis.  All doctor predictions and prognosis pointed to Alan being in a wheelchair by now but instead Alan travels with Suzanne and is walking only occasionally using a leg brace or cart when he has to walk long distances.  Alan says, “It is not just one person who gets MS, it is the whole family.”  That is one of the reasons why Alan created his Web site, TheFamily, which addresses family issues around chronic illness and other life lessons.

Alan and David admit that they have learned a lot from each other through this journey with MS.  David says his dad has taught him to never feel sorry for himself, to embrace both the blessings and burdens in life with a positive attitude and to help as many people as you can with whatever you can.  Alan believes David has taught him what patience and perseverance are all about.

“I know it’s crazy to say, but it is actually a great time to have MS,” says David.  When his father was diagnosed more than 25 years ago, there were not a lot of options but today David, who sits on the board of the Nancy Davis Foundation for MS and attends her annual conferences for the foundation’s Center Without Walls says, “There are eight drugs on the market and several more being approved by the FDA as we speak.  The numerous choices we now have to attack this disease that is attacking our bodies – especially with the education about alternative, all-natural choices that I have made for my lifestyle – are encouraging.  I truly think we are going to lick this disease and the great research minds agree – they believe MS is one of the chronic illnesses that I may see a cure for in my lifetime.” (See more with David and other celebrities from the Nancy Davis Foundation for MS Race to Erase MS Event).

When I asked both Alan and David what are their private passions – both responded almost simultaneously with “spending time with family.”  While David enjoys sports like skiing even though his balance and agility are not what they used to be because of the MS, and Alan loves to continually learn new things and brainstorm on ideas – like teaching himself html code so he can build web sites – both men are happiest when surrounded by family.

As we wind up the interview, David is eager to get back to playing Legos and watching Disney movies with his two young daughters – a scene he was not sure he would have just a few years ago.  He says he wears a ring on his right hand that is engraved with ETTE – Endure To The End.  He says he has had the ring since before his MS diagnosis, so today he adds, “Endure to the end …of the day.”  With his girls calling for daddy from the other room, we say our “so longs” and I wish Alan happy birthday (June 22) and both men a happy Father’s Day.  I laugh as I later see a tweet from David – it says simply, “Going to make tshirts for my girls that say ‘Having MS gets on my dad’s nerves.’”

Book Cover SpotlightRead more of David and Alan Osmond’s story in Sherri Snelling’s book, A Cast of Caregivers,  which includes interviews with other celebrity caregivers as well as an A to Z guide on caregiving and how to balance self-care while caregiving. Click here to buy the book now.


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Researchers, Advocates and Celebrities Finding Ways to Erase Alzheimer’s

May 17, 2013 by Leave a Comment

Alzheimers Prevention Initiative logoI was recently asked to participate in a sponsored campaign by BoomBox Network to support the Alzheimer’s Prevention Initiative. This international collaboration of various groups led by Banner Alzheimer’s Institute advocates for a new era of Alzheimer’s prevention research. Recently the Alzheimer’s Association issued its annual Facts & Figures Report finding 1 in 3 seniors will die from Alzheimer’s disease.  It is now the sixth leading cause of death in the U.S. and the only disease on the Top 10 list that cannot be prevented, slowed or cured. As the caregiving blogger for the Alzheimer’s Association and a recent honoree by SharecareNow as one of the Top 10 Alzheimer’s influencers, I am proud to support this campaign. Join today to sign the FREE registry and help us reach 10,000 names in an effort to end Alzheimer’s disease in our lifetime.  

 

LA Night at Sardis _head2

With a Song In Their Hearts

More than 1,000 luminaries poured into the ballroom of the Beverly Hilton Hotel which was transformed for the evening into the famous Sardi’s, the 90-year-old New York Broadway theater district’s landmark restaurant, to raise their voices and funds for Alzheimer’s research and programs.

I was on the purple carpet with my video crew as the cavalcade of stars entered the event and we were able to capture the following interviews with some of our favorite celebrities (View the interviews here on the AARP YouTube channel).

More than 15 million Americans are caring for someone with Alzheimer’s and one of the most high-profile dementia caregivers over the last year is Kim Campbell, wife of music legend Glen Campbell. It was the highlight of my evening to talk with Kim and her daughter Ashley about touring for Glen’s final farewell tour to promote his album, Ghosts on the Canvas. Both Kim and her daughter are beautiful blondes who have a glow that comes from within – their positive spirit, strong family bond and hopeful future outlook were obvious while we talked about a diagnosis which can often be devastating for families. They remind all of us what it takes to keep going every day and find the blessings that can come with caregiving.

Glen and Kim Campbell dreamstime_m_23475186 (2)Kim Campbell, who has been married to her husband for 31 years, recalls the day he was diagnosed, “Glen just released his final studio album and we wanted to go out and promote it when we heard he had Alzheimer’s.  It was hard for him but our kids are his band and we all surrounded him the best we could and he got out there and did it and we had a great time.”

As we talked about how difficult it can be for caregivers of those with dementia to cope emotionally and find time so they don’t neglect themselves Kim advised, “You need to have a support group, you need to have friends and family around you, you need to take care of yourself, you need to get a break from it because it is grueling to the caregiver 24/7.” She continued, “I’ve got this fabulous daughter and two sons that live nearby – it takes a lot of family and friends to juggle so you can have a little freedom to take care of yourself.”

When I asked Kim how she finds her “Me Time,” the former Radio City Music Hall Rockette responds with a sentiment from the Broadway hit, A Chorus Line, which is appropriate for the evening’s theme, “I go to ballet – everything is beautiful at the ballet.”

Ashley Campbell screen grabAshley Campbell, who is in her early 20s and gets her gorgeous looks from mom and her musical talents from dad, told me she has been touring with her dad since 2009. She plays guitar, banjo and keyboards and it is the highlight of the farewell tour concert to watch Ashley and Glen Campbell play dueling banjo/guitar.

“It’s been quite a ride,” said Ashley.  “To spend time with him is such a gift, especially when you know what’s happening, most people don’t know what’s happening and they take it for granted that their parents are there and with them – I’m just trying to spend every minute with my dad.”

Ashley and dad Glen performing during his 2012 Farewell Tour

Ashley and dad Glen performing during his 2012 Farewell Tour

At such a young age, Ashley is also acutely aware of the caregiving challenges and how she can help support her mom as part of the caregiving team for Glen.  “I’ve been living at home the last couple of years since my senior year of college to help out my mom because it’s not a one-person job.”  Recently testifying before Congress for more funds for Alzheimer’s research, she also believes caregivers of those with dementia shouldn’t stay in the shadows, “Keep your friends around you and never be ashamed of what’s happening. You should never go through it alone.”

 

 

James Keach screen grabJames Keach, who produced the award-winning movie Walk the Line with Joaquin Phoenix playing Johnny Cash and Oscar®-winner Reese Witherspoon as June Carter, spent the last year with the Campbells making a film about Glen’s farewell tour and his Alzheimer’s diagnosis. He told me, “The experience was life changing. I actually resisted doing a film about Alzheimer’s because I thought this is going to be really depressing but it’s actually turned my whole life around. Glen and his family are so in the moment, so supportive of one another and have really dedicated their life to changing the face of Alzheimer’s in America. I think Glen’s legacy won’t just be music, it will be what he’s done with this journey with Alzheimer’s.”

Ron Howard on stageRon Howard was on hand to present the Abe Burrows Entertainment Award to his producing partner, Brian Grazer.  After their experience directing/producing the Oscar®-winning film, A Beautiful Mind, both he and Brian became invested in the issues facing those with mental health problems and neurological disorders. “We both share an interest in the mind and how it works – when things are going well and what can be done when something is going wrong.”

As we talked about mental and emotional health for caregivers, Ron shared, “Every family is touched by it, let’s face it and when it strikes a family, no matter how learned the family might be, it resonates in very emotional ways. It’s something to be open about and very ambitious in trying to improve. What we need is knowledge; it can’t be left to families to solve their own problems, particularly when it comes to psychological and neurological issues which are so complicated.”

Jason AlexanderJason Alexander is best known as George Costanza from the TV hit, Seinfeld, but his first love is on the Broadway stage, especially musical theater.  “We’re now at that age when we can’t remember where our car keys are and we’re worried, is this the beginning of Alzheimer’s?” said Jason. “We say it jokingly but this is one of those diseases that scares everybody so it would be nice to get rid of it.”

We talked about the power of music to help those with dementia. Jason has seen an older colleague – one of TV’s pioneers struggling with dementia – who knows every word of the songs he used to sing and perks right up when Jason is singing. “It’s a whole spark of life that comes together,” marvels Jason. “Music is an enormously wonderful tool to have in the arsenal to help people going through this.”

Emmy Rossum singingEmmy Rossum, stylish, talented young star of TV’s Shameless and a Broadway musical veteran revealed, “This year a friend of mine who is in her early 40s was diagnosed with early on-set and she had to leave her job.  It’s been really hard and she’s here tonight so I’m excited to donate any talents I have to making an amazing evening for everyone here and to raise some money for the charity.”

 

 

 

Big Bang Theory cast on the purple carpet

Big Bang Theory cast on the purple carpet

The main cast of TV’s hit comedy, The Big Bang Theory, has made time to perform at A Night At Sardi’s for the last five years.  This year they brought the house down with their version of Time Warp from The Rocky Horror Picture Show.  The Emmy-winning star of the show, Jim Parsons said about Alzheimer’s disease, “There is no cure yet and it’s very important to keep attention on it until there is one.”

Big Bang Theory cast after performing "Rocky Horror Picture Show"

Big Bang Theory cast after performing “Rocky Horror Picture Show”

 

 

 

 

A sentiment the night’s crowd is dedicated to – seeing an end to Alzheimer’s disease in our lifetime.

 

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Marg Helgenberger – Juggling College, Caregiving and Career

May 4, 2013 by Leave a Comment

MARG HEADSHOTMay marks National Multiple Sclerosis Awareness Month and few celebrities are as passionate about raising awareness for this disease than the Emmy Award-winning actress Marg Helgenberger.  Marg cared for a father who was diagnosed with MS when she was still in college.  While she was in her 20s, there are more than 1.5 million children between the ages of 8-18 who are the primary caregivers for parents and grandparents with chronic illnesses.  A Bill and Melinda Gates Foundation study on high school drop-outs reported 1 in 4 left school because of their caregiving responsibilities.

Sherri Snelling spoke to Marg about how she is stepping into the spotlight as a champion for those living with MS, a disease which claimed her father’s life almost 25 years ago when Marg was just starting her acting career.

Marg Helgenberger sounds as strong and in charge as she did playing Catherine Willows, the independent single mom and forensic crime scene analyst on CBS-TV’s top-rated drama series, CSI.  However, as we talk about her recent work to bring awareness and support to those suffering from multiple sclerosis (MS) and how this disease impacted her dad and her whole family, the vulnerability of youth and past painful memories resonates in the voice of this ageless actress.

In the 1980s, Marg was still a college co-ed at Northwestern University with a future full of promise when she got the call that her father had a devastating chronic illness.  Marg thinks back about that day and the five years that her father struggled with MS.

“My dad was a young man when he was diagnosed with MS – he was so full of life and to see this disease overpower him in such a short time was really sad and devastating,” says Marg.

Marg grew up in America’s heartland, a small Nebraska town where fields, farms, family and friends abounded.  Her close knit clan included an older sister, her younger brother and her parents.  Her mom was a nurse and her dad, Hugh, owned a butcher shop.  At first, her father originally attributed the tingling and numbness in his arm to his physically intensive job lugging sides of beef around and constantly chopping and cutting – he thought he just had a pinched nerve.  However, as the symptoms progressed and persisted, he was eventually given the diagnosis of multiple sclerosis (MS) – and the prognosis could not have been worse as it was an extremely rare and progressive type of MS.

Multiple sclerosis is one of the numerous chronic illnesses for which there is still no cure, although according to the Nancy Davis Foundation recent research is encouraging.  Today, more than 400,000 people in the U.S. and 2.5 million people worldwide live with this insidious disease that attacks the central nervous system.  Essentially, the myelin, which is the protective covering for the nerve fibers in the central nervous system, become inflamed or damaged and through this inflammation the myelin becomes scarred, thus forming sclerotic patches.   These multiple scars or lesions cause interference with the transmission of signals to the brain and spinal cord that then cause the unpredictable and often debilitating symptoms that MS patients experience such as numbness or tingling in the extremities to periods of blindness and even full paralysis.

Twice as many women as men are diagnosed with MS, and it is typically uncovered when patients are 20-50 years old.  While researchers feel there may be genetic predictors for MS, there is no clear connection that one generation passes it to another.  In fact, research has not shown any significant findings on how and why certain people are afflicted with MS.  What they do know is that no two people experience MS in the same way – some patients may experience some or most of the symptoms and may have periods of full recovery.  However, because the disease is not curable, it is a progressive and degenerative disease of varying degrees.

Most patients fall into one of four categories:  1)  Relapsing/Remitting (the most common with 85 percent of MS patients in this category where you have flare-ups with periods of remission); 2)  Primary/Progressive (continuous worsening of the disease with no flare-ups or remissions); 3)  Secondary/Progressive (begins as relapsing/remitting but if untreated becomes primary/progressive); and 4)  Progressive/Relapsing (the most rare with continuous decline and increasingly intense flare-ups).

Marg’s father had Progressive/Relapsing MS and was diagnosed when he was only 45 years old.

It Takes A Village

Marg with her mom & dad at her college graduation

Marg remembers this time as very challenging for her family.   Her mom had just recently been diagnosed with breast cancer and underwent a double mastectomy when Marg was a junior in college.  Now just a year later, the family was hit by the news of her dad’s disease.  In the 1980s they did not have the therapies and medications for MS that they do today.  Marg remembers going with her mom and dad to the hospital where he would get corticosteroid shots that would leave him relieved from some of the pain but bloated, unable to sleep and miserable.

It was during this period that Marg decided she wanted to pursue an acting career and the Big Apple was where she had to be.  However, she says she felt guilty over not staying in Nebraska to help her mom care for her dad.  So often, family members in Marg’s position give up their dreams.  But, Marg’s parents were supportive of their daughter and encouraged the pursuit of her acting passion in New York.

As Marg’s career took off, she landed a key role on the TV soap opera, Ryan’s Hope, and began appearing on popular primetime TV shows like Spencer for Hire and China Beach.   Meanwhile her dad’s symptoms continued to worsen.  Originally he was able to get around with a cane but he quickly became wheelchair-bound and could no longer work.  Since her mom had to continue her job as a nurse to make ends meet, her father was often home alone.  One day his wheelchair got jammed as he tried to get around a hallway corner and he was stuck there for hours.  That is when the family hired a professional health care worker to provide home care for Marg’s dad while her mom was at work.  With money tight, Marg, her mother and her brother formed a caregiving tag team with her mom and brother performing the physical care and Marg providing a lot of the financial resources.  Marg also tried to get home as many weekends as her job would allow.

It was during this period that Marg said she really appreciated her small town, rural America upbringing.  The head of the local Jaycees (also known as the United States Junior Chamber), a civic organization for leadership training for those ages 18-41, contacted Marg and said they wanted to hold a fundraiser to buy a wheelchair-equipped van for her dad and family.  They were able to raise enough funds that Marg could match the amount they raised and they could purchase the vehicle.

“It really struck me as so sweet and that there is such a power of community when someone is in need,” says Marg.

It was this experience that planted the seed of inspiration in Marg to become a champion to help others.  While her acting career continued to soar with roles in TV (Perfect Murder, Perfect Town, The Tommyknockers) and films (Erin Brockovich, Mr. Brooks), she also became a passionate advocate for breast cancer awareness and fundraising, hosting an annual golf tournament in her home state to fund breast cancer treatments and research at the local Omaha hospital.

She told me that “not a day goes by that I don’t think about my dad,” and now her advocacy is bringing more awareness to finding a cure for MS.

“While I am so proud of the progress made in breast cancer treatments and the small role I could play in helping people, multiple sclerosis just doesn’t get the kind of attention as other diseases so I want to shine a spotlight on this disease which is so devastating for families,” says Marg.

She will be in the spotlight in support of MS awareness on May 18 and I know whatever role Marg takes on – actress, advocate, caregiver – this star will continue to shine at whatever she chooses.

Watch Marg’s interview from the Race to Erase Event

This blog is adapted from Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care. To read more of Sherri’s interview with Marg, click here to buy the book now.

 

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The Music of the Night – Stars Step Into the Spotlight to Fight Alzheimer’s

April 2, 2013 by Leave a Comment
On the Alzheimer's purple carpet ready to interview the evening's stars

On the Alzheimer’s purple carpet ready to interview the evening’s stars

LA Night at Sardis _head2Caregiving Club CEO, Sherri Snelling, was on the “purple carpet” in Beverly Hills to interview celebrities and other VIPs attending the 21st annual Alzheimer’s Association gala event, “A Night At Sardi’s.” Founded by Laurie Burrows Grad to honor her father, the late playwright/director Abe Burrows, these annual events have raised more than $21 million to support the Alzheimer’s Association mission. 

With a Song In Their Hearts

More than 1,000 luminaries poured into the ballroom of the Beverly Hilton Hotel which was transformed for the evening into the famous Sardi’s, the 90-year-old New York Broadway theater district’s landmark restaurant, to raise their voices and funds for Alzheimer’s research and programs.

I was on the purple carpet with my video crew as the cavalcade of stars entered the event and we were able to capture the following interviews with some of our favorite celebrities (View the interviews here on the AARP YouTube channel).

The Alzheimer’s Association reports more than 15 million Americans are caring for someone with Alzheimer’s and one of the most high-profile dementia caregivers over the last year is Kim Campbell, wife of music legend Glen Campbell. It was the highlight of my evening to talk with Kim and her daughter Ashley about touring for Glen’s final farewell tour to promote his album, Ghosts on the Canvas. Both Kim and her daughter are beautiful blondes who have a glow that comes from within – their positive spirit, strong family bond and hopeful future outlook were obvious while we talked about a diagnosis which can often be devastating for families. They remind all of us what it takes to keep going every day and find the blessings that can come with caregiving.

Glen and Kim Campbell dreamstime_m_23475186 (2)

Kim Campbell, who has been married to her husband for 31 years, recalls the day he was diagnosed, “Glen just released his final studio album and we wanted to go out and promote it when we heard he had Alzheimer’s.  It was hard for him but our kids are his band and we all surrounded him the best we could and he got out there and did it and we had a great time.”

As we talked about how difficult it can be for caregivers of those with dementia to cope emotionally and find time so they don’t neglect themselves Kim advised, “You need to have a support group, you need to have friends and family around you, you need to take care of yourself, you need to get a break from it because it is grueling to the caregiver 24/7.” She continued, “I’ve got this fabulous daughter and two sons that live nearby – it takes a lot of family and friends to juggle so you can have a little freedom to take care of yourself.”

When I asked Kim how she finds her “Me Time,” the former Radio City Music Hall Rockette responds with a sentiment from the Broadway hit, A Chorus Line, which is appropriate for the evening’s theme, “I go to ballet – everything is beautiful at the ballet.”

Ashley Campbell screen grabAshley Campbell, who is in her early 20s and gets her gorgeous looks from mom and her musical talents from dad, told me she has been touring with her dad since 2009. She plays guitar, banjo and keyboards and it is the highlight of the farewell tour concert to watch Ashley and Glen Campbell play dueling banjo/guitar.

 

“It’s been quite a ride,” said Ashley.  “To spend time with him is such a gift, especially when you know what’s happening, most people don’t know what’s happening and they take it for granted that their parents are there and with them – I’m just trying to spend every minute with my dad.”

Ashley and dad Glen performing during his 2012 Farewell Tour

Ashley and dad Glen performing during his 2012 Farewell Tour

At such a young age, Ashley is also acutely aware of the caregiving challenges and how she can help support her mom as part of the caregiving team for Glen.  “I’ve been living at home the last couple of years since my senior year of college to help out my mom because it’s not a one-person job.”  She also believes caregivers of those with dementia shouldn’t stay in the shadows, “Keep your friends around you and never be ashamed of what’s happening. You should never go through it alone.”

James Keach screen grabJames Keach, who produced the award-winning movie Walk the Line with Joaquin Phoenix playing Johnny Cash and Oscar®-winner Reese Witherspoon as June Carter, spent the last year with the Campbells making a film about Glen’s farewell tour and his Alzheimer’s diagnosis. He told me, “The experience was life changing. I actually resisted doing a film about Alzheimer’s because I thought this is going to be really depressing but it’s actually turned my whole life around. Glen and his family are so in the moment, so supportive of one another and have really dedicated their life to changing the face of Alzheimer’s in America. I think Glen’s legacy won’t just be music, it will be what he’s done with this journey with Alzheimer’s.”

Ron Howard on stageRon Howard was on hand to present the Abe Burrows Entertainment Award to his producing partner, Brian Grazer.  After their experience directing/producing the Oscar®-winning film, A Beautiful Mind, both he and Brian became invested in the issues facing those with mental health problems and neurological disorders. “We both share an interest in the mind and how it works – when things are going well and what can be done when something is going wrong.”

As we talked about mental and emotional health for caregivers, Ron shared, “Every family is touched by it, let’s face it and when it strikes a family, no matter how learned the family might be, it resonates in very emotional ways. It’s something to be open about and very ambitious in trying to improve. What we need is knowledge; it can’t be left to families to solve their own problems, particularly when it comes to psychological and neurological issues which are so complicated.”

Ron Howard and I sharing a laugh during my interview at the Alzheimer's event

Ron Howard and I sharing a laugh during my interview at the Alzheimer’s event

Jason AlexanderJason Alexander is best known as George Costanza from the TV hit, Seinfeld, but his first love is on the Broadway stage, especially musical theater.  “We’re now at that age when we can’t remember where our car keys are and we’re worried, is this the beginning of Alzheimer’s?” said Jason. “We say it jokingly but this is one of those diseases that scares everybody so it would be nice to get rid of it.”

We talked about the power of music to help those with dementia. Jason has seen an older colleague – one of TV’s pioneers struggling with dementia – who knows every word of the songs he used to sing and perks right up when Jason is singing. “It’s a whole spark of life that comes together,” marvels Jason. “Music is an enormously wonderful tool to have in the arsenal to help people going through this.”

Emmy Rossum singingEmmy Rossum, stylish, talented young star of TV’s Shameless and a Broadway musical veteran revealed, “This year a friend of mine who is in her early 40s was diagnosed with early on-set and she had to leave her job.  It’s been really hard and she’s here tonight so I’m excited to donate any talents I have to making an amazing evening for everyone here and to raise some money for the charity.”

 

 

 

The main cast of TV’s hit comedy, The Big Bang Theory, has made time to perform at A Night At Sardi’s for the last five years.  This year they brought the house down with their version of Time Warp from The Rocky Horror Picture Show.  The Emmy-winning star of the show, Jim Parsons said about Alzheimer’s disease, “There is no cure yet and it’s very important to keep attention on it until there is one.”

Big Bang Theory cast on the purple carpet

Big Bang Theory cast on the purple carpet

 

Big Bang Theory cast after performing "Rocky Horror Picture Show"

Big Bang Theory cast after performing “Rocky Horror Picture Show”

 

 

 

 

 

 

 

A sentiment the night’s crowd is dedicated to – seeing an end to Alzheimer’s disease in our lifetime.

 

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Caregiving Club Celebrates the Oscars!

February 22, 2013 by Leave a Comment

Oscar Spotlight LG dreamstime_m_22803092 (2)Caregiving Club recognizes that pop culture unites us which is why we are celebrating movies that feature a caregiving theme with our reviews in the Caregiving Goes to the Movies pages.  Click here to read Sherri Snelling’s blog for Huff Post 50 about a trio of movies about caregiving that are part of this Sunday’s Oscars magic.

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Caregiving Goes to the Oscars

February 22, 2013 by Leave a Comment

Oscar Blue LG dreamstime_m_17950295 (2)Just in time for the Academy Awards – click here to read my blog post for Huff Post 50 on a trio of films that capture the spectrum of caregiving at the movies: http://www.huffingtonpost.com/sherri-snelling/oscar-movies-about-caregiving_b_2742834.html?view=screen

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The First Lady Caregivers

February 17, 2013 by Leave a Comment

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.  And while feature films (Oscar-nominated Lincoln) and mini-series have celebrated our former presidents, it is the First Ladies who have served as caregivers that I honor today.

 

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 upcoming book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, published by Balboa Press and available now.

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Celebrating First Lady Caregivers

February 17, 2013 by Leave a Comment

Caregiver is a role we all play – even our First Ladies.  Read their stories in our Spotlight below – our special President’s Day blog.

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Stars Talk Healing Power of Music

February 10, 2013 by Leave a Comment

Singers Glen Campbell and Holly Robinson Peete and Grammy legend Quincy Jones talk about their personal experiences with the therapeutic power of music.   Click here to read more.

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A Woman Tackles the NFL and Dementia

February 3, 2013 by Leave a Comment

JohnandSylviaMackey (2)As Super Bowl Sunday gets underway today, I want to share with you a story about football, courage, love and overcoming all obstacles. The following story is from an interview I did with Sylvia Mackey, wife of NFL Hall of Fame John Mackey of the Baltimore Colts.  It is a story about dealing with her husband’s dementia for more than a decade and getting 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

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

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.

Sylvia Mackey bio photoToday, 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.

As the Giants and Cowboys prepare to square off tonight, remember Sylvia’s message to all caregivers – and every day – “Prepare.  Prepare.   Prepare.”

This is an excerpt on Sylvia Mackey’s story from Sherri Snelling’s upcoming book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, which will be published by Balboa Press on February 1, 2013.

 

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Golden Girl Jodie Foster Shines a Spotlight on her Sandwich Generation Role

January 15, 2013 by 1 Comment

70th Annual Golden Globe Awards held at the Beverly Hilton HotelSunday night was Jodie Foster’s night as she took the stage at the annual Golden Globe Awards to accept the Cecil B. DeMille Award for a Lifetime Achievement in Film.  For more than 7 minutes she commanded the stage and a worldwide audience in a heartfelt stream of consciousness as this most private of celebrities shared emotional moments in the same way she has shared her art with us through her riveting film performances for four decades.

But of all the things Foster revealed, the most emotional moment came as she spoke of her mother, Evelyn.  She talked directly into the camera as if the crowded room of Hollywood luminaries and millions of viewers at home went out of focus and she was speaking to the single mom who held her 50-year-old daughter’s hand through show business since she was three years old.

“Mom I know you’re inside those blue eyes somewhere and that there are so many things you won’t understand tonight,” said a teary Foster. “But this is the only important one to take in:  I love you, I love you, I love you.  And I hope that if I say this three times, it will magically and perfectly enter into your soul, fill you with grace and the joy of knowing that you did good in this life.  You’re a great mom. Please take that with you when you’re finally OK to go.”

This revelation of her 84-year-old mother’s Alzheimer’s disease (although she never said “Alzheimer’s”) was not the first time Foster has talked about her mother’s illness but it was the most high profile and profoundly public acknowledgement of her Sandwich Generation caregiving role. Her young sons, Charles and Kit, were in the audience as their proud mom talked of her boys being the reason she is inspired while she also said her mother was the “greatest influence of my life.”

In a 2010 interview with the Daily Mail in the UK, she said about her mother’s illness, “She’s really a new person, not the mom I grew up with, and I have a real nostalgia for who she was. She spent years and years alone because she never remarried after my father left and she raised us by herself.  She used to say: ‘I’m an only child so I prefer to be alone,’ and she didn’t keep up with her friends.”

According to the Alzheimer’s Association, more than 5 million Americans and 36 million people worldwide are diagnosed with dementia and an additional 15 million Americans care for someone with dementia or Alzheimer’s disease (the most common type of dementia).  In fact, every 68 seconds someone new develops the disease and while early on-set Alzheimer’s can be diagnosed when someone is 30, 40 or 50, one out of every two people age 85 or older will develop dementia.

Jodie Foster joins the ranks of the 24 million Sandwich Generation caregivers – those caring for children still at home while simultaneously caring for an older parent – including high-profile caregivers such as Diane Keaton, Maria Shriver, Brooke Shields, Joan Lunden and Holly Robinson Peete.

While some caregivers of those with Alzheimer’s find it hard or almost impossible to care for their loved one at home because of violent outbursts, sundowning (extreme paranoia and frightfulness that can including screaming that begins at dusk) or wandering off, Foster has stated she will keep her mom in her home as long as possible.

Jodie-Foster-mother-picWhen asked in an interview if she would consider seeking residential care for her mother, she said, “Oh God no way. I’m going to feel good — I’m going to feel that the end honored her and that she didn’t have to lose her dignity.

“Dementia is an interesting thing,” continued Foster. “It’s the hardest thing I’ve been through and yet also strangely sacred… I’m just here to care for her. I have no axe to grind. Mine will be the last face she sees.”

Jodie Foster has never wished to be a symbol for her choices in life: Child actor free of scandal (if you don’t count the pre-pubescent prostitute she played in Taxi Driver which had some people up in arms); college co-ed career disrupted by a would-be presidential assassin (that forced her even further into her privacy shell); actor turned director (who doesn’t do vanity projects but thoughtful films that speak from the heart); but I would love it if the Sandwich Generation could count on Jodie to continue to raise awareness for a role many of us will play in life: caregiver.

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Brooke Shields: The Endless Love of Caring for Someone with Alzheimer’s

November 11, 2012 by 6 Comments

On November 5, 2012, Brooke Shields lost her mom, Teri (age 79) who had long suffered from dementia.  Here is the article Sherri Snelling wrote in 2011 about Brooke’s challenges as a Sandwich Generation caregiver.

We remember her as an icon of the ‘70s and ‘80s from controversial movies like Pretty Baby and those provocative Calvin Klein ads (“You want to know what comes between me and my Calvins?  Nothing.”).   In recent years she has reinvented herself as a TV star (Lipstick Jungle, Suddenly Susan) and Broadway headliner (Chicago and The Addams Family).

While she has maintained a role in the spotlight for more than 40 years – perhaps her most important public role is in speaking out about postpartum depression after the birth of her first daughter and in the last few years speaking up about becoming a caregiver for her mother.

Alzheimer’s Bridges the Gap Between Daughter and Mother

It was her role as a new mom and her mother’s diagnosis with a dreaded disease that led her to heal a rift that emerged between the once inseparable Brooke and her mother, Teri.  Often criticized for steering her young daughter’s career in sexually explicit ways for someone so young, Teri always had a champion and friend in her daughter.  However, when Brooke turned 28 she cut all ties with her mother.  The reason?  Teri’s alcoholism.

A few years ago, Teri was diagnosed with dementia and progressive Alzheimer’s disease.  Brooke went through all the emotions that a family caregiver of someone with an Alzheimer’s diagnosis does – especially the sadness and confusion over an illness that robs the person of their memories or causes them to be violent and aggressive, and have the tendency to wander.

Brooke’s New Role – Sandwich Generation Caregiver

When Brooke described caregiving for her mom in a 2005 interview, she called it a “burden” and a “blessing.”   The reality is that Brooke was a caregiver for her mom for a lot of years as so many children of alcoholics find themselves.

But just as Brooke had established her independence and had two beautiful young daughters, her mother’s diagnosis finds Brooke reprising her role as caregiver to her mom.

Trying to maintain that balance between caring for her girls and caring for her mother makes Brooke one of  the 24 million Sandwich Generation caregivers.  These caregivers are squeezed between raising children and caring for an older loved one simultaneously.

In addition to the juggling act of caring for kids, career and an older parent, so many family caregivers express feeling all alone in their caregiving journey.   It is this sense of isolation that can lead to chronic stress, depression and other health risks.  For Brooke, it truly is a solo act – as an only child of a single mother all the caregiving responsibilities fall squarely on Brooke’s shoulders.

The Constant Concern of Alzheimer’s Caregivers

Brooke’s mother is one of the 5.4 million Americans today who have been diagnosed with Alzheimer’s disease, the most common form of dementia.    According to the Alzheimer’s Association, 50 percent of those living with disease are undiagnosed.   Knowing the early warning signs and being able to plan ahead for the caregiving journey can help caregivers and families.

Brooke noticed over the years that her mother was not as “competent” as she had been.   It was not until 2008 after her mother’s diagnosis that Brooke realized she was not capable of keeping her mother as safe and as healthy as possible at home.  She made the hard decision to have her mother checked into a senior living facility specializing in dementia and Alzheimer’s care.

However, a frightening incident where her mother was checked out of the facility by a tabloid reporter only to be found having lunch with the reporter at a nearby diner, caused Brooke to realize that being a caregiver of someone with dementia is going to be a long, tough emotional journey.

The Emotional Toll of Caregiving

When the shift happens and you become a parent to your parent – there are no rules, books or guideposts for what to expect.  Brooke now finds herself struggling with the emotional toll of caregiving on her and her entire family.

In a recent interview she said of her mother, “I’ve dealt with her alcoholism for years, but this is so new to me.  I’ve been making my own decisions for a long time, but after all these years, I want my mom.”

And, while Brooke is acutely aware of all that her mother’s diminishing health entails, she admits it is beginning to have an effect on her children as well — particularly her oldest daughter, Rowan, age 6 ½.  She was recently interviewed saying, “My oldest is uncomfortable because she knows more,” Brooke says.

“One day she said, ‘Mom, are you gonna be crazy like Toots when you grow up?’ I was like, ‘Oh, God.’“

Having to help her daughters understand the confusion about how Alzheimer’s can effect a loved one while simultaneously managing her own conflicting emotions and sense of loss for her slowly disappearing parent is one of the burdens of Sandwich Generation caregivers like Brooke.

Brooke Writes Her Own Caregiving Script

Being stuck in the middle of this caring continuum can be isolating, frightening and lonely.  Some days you feel like “who is taking care of me?”  The answer is you need to take care of yourself – do the things that nurture your soul, maintain your health, and bring peace to your mind away from the endless needs of everyone else.

As Brooke said in the recent magazine interview, “First of all, there’s no martyrdom.  It’s a pain in the ass, but it has to be done. I just think, you’re only given what you supposedly can handle.”

In other words, Brooke looks at caregiving as just one more role she will play so she is preparing and performing as best she can.  When musing about the differences between her generation and her mother’s, she said, “Hers was an era without self-analysis, self-affirmation.  Our generation doesn’t stand for that.”

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