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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Gear 3 – Alternative Transportation for Mom and Dad

June 16, 2013 by Leave a Comment

Taxi lightWhen it comes to seniors and driving, caregivers need to shift through 3 gears with a parent or other older loved one about maintaining mobility and independence while also staying safe.  The 3 gears of senior driving are:

1. Driving Assessment (read the blog here)

2. Driving Retirement and How to Have the Conversation (read the blog here)

3. Alternative Transportation – read my article for PBS/Next Avenue on Gear 3:  how to plan for getting mom or dad around.

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Gear 2 – Driving Retirement and 5 Tips on How to Have the Conversation about “Driving Miss Daisy”

June 16, 2013 by Leave a Comment

Give Up the Car Keys dreamstime_5605543 (2)When it comes to seniors and driving safety, caregivers face 3 gears that they need to shift through with older parents:

1)  Driving Safety and Assessment (click here to read the blog)

2) Driving Retirement (read below)

3) Alternative Transportation (click here to read the blog)

This blog is about Gear 2 – perhaps the most difficult of the three gears and definitely one of the most difficult conversations you will have with your older loved one.  In fact, one survey conducted by Caring.com and the National Safety Council found among aging Americans, “giving up the keys” is the least favorite topic to have with an adult child – more seniors would rather discuss their funeral arrangements (29%) or selling and moving from their family home (18%) than talk about not driving anymore (36%).

Knowing how difficult this discussion will be, how do you start?  If you have already shifted through Gear 1 – an assessment of your loved one’s safe driving skills and found the results scarier than the video game Grand Theft Auto, then a conversation needs to happen. One study found most older Americans want to hear about their need to retire their car keys from a spouse (50%) or their doctor (40%) and one-third are open to having the discussion with their adult child.  Caregivers may be the ones to determine when driving retirement needs to happen but it is helpful to engage either your other parent or a doctor to help your parent see the reality of his/her driving future.  One thing is certain – the last person your parent wants to hear they should not drive anymore is a law enforcement officer.

Following are my 5 tips on how to have the conversation, along with some tools and tips to help with this dialogue.  I call it the “Driving Miss Daisy” conversation plan:

1. Never talk about “taking away” without “giving something in return.”

I recommend if you are going to change the way your parent gets around you need to have a plan in place to keep them as independent as possible and feeling their freedom and mobility is not entirely gone.  Going from driver’s seat to passenger seat is hard for your older loved one.  Scope out alternative transportation services, costs, your ability or another family member’s ability to be the taxi driver, etc.  Always be offering a solution when identifying a problem.  The National Center on Senior Transportation is a good place to start with a lot of information, resources and connections to statewide departments of transportation.

2. Do your homework.

In addition to researching alternative transportation plans, do some research about having the driving conversation.  There are great tools available to help caregivers.  The Hartford created a list of pertinent questions called the Conversation Inventory.  Having this document shows your loved one this is not a personal issue where you are trying to punish them.  On the contrary you have taken the time to research this issue and ensure together you can create a good plan for everyone.  I also highly recommend videos from both the Alzheimer’s Association and AARP.  They give you good tips on how to have the conversation.  In one Alzheimer’s Association video, an older woman agrees to sign a contract with her family that if her doctor says it’s time to give up the keys she will do it.

3. Put yourself in your parent’s situation.

Not knowing how you will remain mobile is scary but so is getting behind the wheel of a vehicle that can become a weapon of destruction.  One way to really get in touch with how it feels for your parent is to download a senior driving simulator app called the Driver Seat Game.  The game shows you what happens if you are an 80 or 90-year-old driver and the challenges of maintaining safe driving skills. One user posted this comment, “I want to thank you for making such a great game; it’s nice to know what’s it’s like to be in someone else’s shoes.”

4. Create a strategy.

You need to have a plan on how to have the conversation or the follow-up conversation with your older loved one if a doctor is breaking the news.  One of the best strategies I have found is to compare your parent’s driving health to their physical health. As we age, we know our bodies (and minds) operate differently.  We have to adapt as we face the reality of getting older.  Driving is no different.  It is impossible to think our driving skills and abilities at age 20 are the same at age 80.  This helps put the alternative transportation plan into context.  In the same way your parent can no longer eat spicy Thai or Mexican food without suffering painful heartburn or acid reflux, or your dad can’t navigate stairs as easily or your mom has to give up the stilettos for the kitten heel or flat shoe, driving is the same – adaptation is in order.

5. Try to make it an adventure.

If there is one thing we can be sure about in this life it is that it is always changing.  Change can be good but your parent may not see it that way.  Ensure you help them see a long highway of freedom and independence ahead of them instead of roadblocks. What is essential to remember is this change in their life is about prevention and protection not punishment.

Note:  This blog is an excerpt from A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care by Sherri Snelling (Balboa Press, Feb 2013).

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3 Gears of Seniors and Driving – How Caregivers Can Help Loved Ones Make the Shift

June 16, 2013 by Leave a Comment

Route 66 dreamstime_m_5907163 (2)One of the toughest issues caregivers face with older parents is the dilemma around seniors and driving.  We’ve all seen the news with tragic tales of older drivers who accelerate when they are supposed to brake or drive the wrong way on the highway – putting everyone at risk sometimes with fatal results for others and themselves.  The dilemma is how do you know if mom or dad should not drive anymore?  How do you have the conversation around driving retirement?  How do you take away the keys without taking away complete independence and mobility for your older parent?  Adapted from my book, A Cast of Caregivers, here are the three gears caregivers need to know and how to shift through them when it comes to senior driving safety and mobility:

 

 

  1. Driver Assessment

  2. Driving Retirement

  3. Alternative Transportation

 

Route 66

Today, 10 percent of all drivers are over age 70 – and by 2030 one in every five drivers will be over age 65. Among these older drivers; between 23-40 percent will have macular degeneration creating vision-related problems for driver safety according to the Macular Degeneration Partnership. The Automobile Club of America states men over age 70 outlive their safe driving ability by six years and for women it is 11 years. But those are just numbers. When it comes to driving, skills and judgment are more important than age.

Following are several warning signs that are the most common cause for concern about your parent’s driving ability. You want to look for patterns not just one incident. Keep in mind some of these issues are minor, others more serious.

1. They have become fearful, nervous or anxious about driving.

2. There are ongoing scrapes and dents to their car – and they confess they hit the mailbox or curb – again and again and again.

3. They have difficulty staying in lanes.

4. They have trouble following road signs or street markings.

5. They have a slower response time to basic driving skills like braking or accelerating.

If you’ve noticed the signs as well as taken a ride with your loved one, and felt like you were on Mr. Toad’s Wild Ride at Disneyland, it’s time to do two things: look into adjusting things in your loved one’s car for better vision and mobility, and think about a driving assessment to determine your loved one’s real driving performance.

The Adjustment Bureau

Sometimes a quick adjustment to seats or steering wheels can make a big difference. Remember, we shrink in size as we age. In fact, the Harvard Health Letter says after age 40 we lose ½ inch every decade – ultimately decreasing in size by about three inches in our golden years. In addition, arthritis or osteoporosis may make our driver’s seat position, our flexibility and our reaction time different from 10-20 years ago. The MIT AgeLab recently conducted tests and found between the ages of 30 and 70 we lose 20-30 percent in our range of motion and develop poor neck rotation that can double the risk of an accident.

One test comes from AARP, American Society on Aging, Auto Club of America and the American Occupational Therapy Association who collaborated on a 15-minute, 12-point assessment for senior drivers at car dealerships, senior centers and other locations called CarFit to ensure drivers have the right car settings for their safe driving needs. Three out of 10 senior drivers who have taken the test had at least one problem – such as space between the steering wheel and chest or line of sight over the steering wheel – needing adjustment.

You can also work with an occupational therapist to assess your loved one’s driving. These experts are called driver rehabilitation specialists. In the same way you would seek rehabilitation therapy for your loved one after an accident or surgery, these specialists assess your loved one’s driving skills and prescribe a rehabilitation program or alternative transportation options. Your loved one’s physician can refer you or the American Occupational Therapy Association will have these experts listed in your local area. Your loved one can also take an online driving assessment test from the Automobile Club of America called Roadwise Review or from AARP called the Driver Safety Program.

In addition to driver assessment courses, there are also ways to hone driver skills from the safety of your loved one’s living room chair – all he needs is a computer. Posit Science® has a software product, Drivesharp, which is a suite of brain fitness exercises recommended by AAA Foundation for Traffic Safety. Numerous studies show that drivers who train for just 8-10 hours, process visual information faster, see more of the roadway, and react faster in situations where split seconds matter. In fact, reaction time improves by the equivalent of 22 additional feet in stopping distance at 55 mph. It has been embraced by several national auto insurers because it actually cuts crash risk in half for older drivers. It is not a driver education or assessment, but rather a brain fitness software program that sharpens the brain. Studies show the benefits extend beyond driving to improvements in standard measures of quality of life, including functional independence, confidence, mood and overall health.

Before asking for your parent’s car keys – consider Step 1 these driver assessments.

Click here to read Gear 2 – Driving Retirement and How to Have the Conversation.

Click here to read Gear 3 – Alternative Transportation Plans.

 

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Billionaire & Caregiver David Murdock Talks Healthy Living

June 8, 2013 by Leave a Comment

David Murdock horsebackridingOne of the hardest challenges for caregivers is to maintain their own health & wellness.  Billionaire 90-year-old David Murdock, who cared for his wife, says healthy living is the key to the physical stamina and mental strength to keep going as a caregiver.  Read Sherri Snelling’s interview with Mr. Murdock for PBS Next Avenue.

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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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Emergency Preparedness for Your Older Loved One

June 1, 2013 by Leave a Comment

tornadoDisaster season is here – with the second tornado to rip through Oklahoma in the last few days, disaster prep should be top of mind for caregivers. Read Sherri’s emergency preparedness article for PBS/Next Avenue about ensuring your loved one’s safety by having a family disaster plan in place.

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Men As Caregivers

June 1, 2013 by Leave a Comment

June is all about men – fathers, sons, husbands, brothers, uncles – which is why we are highlighting that 34% of the 65 million caregivers are men.  Watch for our blogs this month about how men are different (or not so different) when it comes to caregiving and a rundown of some of the famous men who have cared for loved ones.

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Caring for Heroes with Invisible Wounds

May 28, 2013 by Leave a Comment

Soldier Daughter LG dreamstime_m_17615125 (2)More than 10 million Americans care for a veteran.  While we celebrate all our veterans this month during National Military Appreciation Month – Sherri writes for Huffington Post 50 about the caregivers of veterans with PTSD, TBI and depression where  the stigma of mental health and brain-related disorders is forcing these caregivers into the shadows.  One organization, the Mental Health Association of New York City is putting the spotlight on caregivers and veterans at its June 6 gala event.

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Caregiving’s Lost Generation – Our Nation’s Children

May 27, 2013 by Leave a Comment

Brothers and Sisters dreamstime_m_21444509 (2)In Sherri’s latest article for Huffington Post, she writes about the 1.4 million children under 18 providing care for a parent or grandparent.  Read the article on Huffington Post Healthy Living here.

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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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Alzheimer’s Prevention Initiative

May 17, 2013 by Leave a Comment

Help us reach 10,000 registrations by May 31 – it’s FREE.  Sign up at the Alzheimer’s Prevention Initiative, an international collaboration to find ways to prevent the Alzheimer’s disease that affects 36 million worldwide.  It’s about ADVOCACY. It’s about ACTION. It’s about ending ALZHEIMER’S in our lifetime.

Alzheimers Prevention Initiative logo

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Back to the Future @50 – Taking Care of the Caregiver Inside All of Us

May 13, 2013 by Leave a Comment

Pushing 50 LG dreamstime_m_4066692 (2)Fifty years ago this month, two things were born:  Older Americans Month and me.  While both of us are going strong, the Office of Women’s Health just kicked off National Women’s Health Week reminding all of us good health takes work, especially as we age.  However, if you are caring for an older parent, working out and staying healthy often seems to get left off the To Do list.

As women, we comprise 66 percent of the nation’s 65 million family caregivers.  And studies show caregiving happens typically around age 50.  This is also the same age where our health risks start to occur if we don’t have good habits in place.  For instance, by age 50 the average American has gained approximately 30 pounds.  We also lose ½ inch of bone and muscle mass every year after our 20s, creating more risk for osteoporosis and fractures, especially for post-menopausal women.  Poor nutrition and lack of regular exercise contribute to both of these health problems.

A National Alliance for Caregiving (NAC) study on caregiver health risks found 85 percent of the caregivers who reported their health in decline while caring for a loved one are women and stress was the No. 1 complaint.  We know stress impacts our health in numerous ways and according to the CDC accounts for 90 percent of all doctor visits.   In the book So Stressed, two women doctors studied stress impact on women’s health.  They found over the last 100 years, women’s biology has not kept up with technology advancements.  Constantly bombarded by what I call noise pollution – ringing smartphones, chiming texts, email reminders, TV, traffic and tweets – women need to find ways to unplug.

Following are five things the Office on Women’s Health says women should do to improve our health and why caregivers are more at risk than the general population when it comes to following these guidelines:

Mammography dreamstime_m_21847816 (2)

1.      Get a check-up

An annual mammogram after age 40 is an important preventative factor for breast cancer which strikes 1 in 8 women.  The NAC study found 22 percent of women neglect this annual exam citing no time to get to their own doctor appointments and screenings. Today is National Women’s Check-up Day – use this day to schedule your doctor and dental appointments and screenings (remember a colonoscopy is also recommended after age 50 to detect and prevent colon cancer).

Walking shoes dreamstime_m_14304581 (2)2.      Get active

Getting 150 minutes of cardio exercise a week is optimal – even if you find it in 10 minute bursts.  Stress releases cortisol which can lead to belly fat and increase risk for heart disease, cancer and even Alzheimer’s disease.  Finding ways to relax – meditation, yoga, tai chi – as well as getting heart rates up by moving daily is critical.  Two easy things caregivers can do: park further away from your destination forcing you to walk and achieve the 10,000 recommended steps you should take daily; and take the stairs instead of elevators and escalators.

Fruit Rainbow dreamstime_m_747473 (2)3.      Eat healthy

Four out of 10 caregivers reported having problems with weight management – either losing or gaining weight while caregiving. Poor nutrition can impact both physical and emotional health.  Finding ways to adopt healthy eating habits is not easy but I recommend caregivers make it fun.  For instance, eating the rainbow daily ensures you are getting colorful fruits and vegetables into your diet for energy and anti-oxidants. Also carry healthy snacks in your purse such as almonds or fiber bars to avoid giving into a french fry frenzy or ice cream meltdown.

Blue Brain dreamstime_m_3576792 (2)4.      Pay attention to mental health

NAC found 9 in 10 caregivers who felt their health declined while caring for a loved one reported depression.  In a recent UCLA study, one-half of all caregivers of those with Alzheimer’s reported dealing with depression.  And the CDC released a report last week stating boomer suicide rates increased 28 percent. The poor economy, jobless rate and caring for older parents were cited as possible contributing factors. Whether it is a support group, professional counseling, prescriptions for anti-depressants or bibliotherapy (writing in a journal), finding ways to deal with caregiver depression is essential – especially since a study in Sweden found that psychological stress in mid-life can lead to dementia later in life.

Cigarette Butt dreamstime_m_464696 (2)5.      Banish bad habits

Ten percent of caregivers reported turning to bad habits to cope with stress – smoking, drinking too much alcohol or misusing prescription drugs.  Almost four in 10 caregivers also report insomnia yet sleeping a solid eight hours is one of the best things you can do to improve your health.  Lack of sleep can cause weight gain, create frayed nerves and impact mental acuity – in an Australian study less than 5.5 hours of sleep a night was equivalent to .05 blood alcohol level.

Back to My Fitness Future @50

When I was a kid, the local YMCA was my home away from home.  I took gymnastics classes there along with tons of other little girls hoping to become the next Nadia Comaneci.  Tuesday nights were our family night at the Y – me in gymnastics, my younger brother enrolled in judo, my dad playing in pick-up games on the basketball court and my mom taking a women’s exercise class.

Recently, the YMCA announced 50 Moving Forward, a new program in partnership with Pfizer.  The program embraces many of the principles upon which the YMCA was founded over 170 years ago – a holistic approach to fitness embracing Christian teachings of body, mind and spirit. Offering physical activities geared to 50-somethings, vaccinations and health screenings, nutritional counseling and social interaction, the program’s mission is to provide boomers with tools and a home where health and wellness are a priority.  The physical activity classes include yoga, retro cycle classes pedaling to ’60s and ’70s tunes and other “fun” activities that don’t feel like going to a gym.

When I talk to caregivers across the country about health and wellness, I advise them to tap into their inner child to find their Me Time Monday. Jim Kauffman, YMCA national director for health and well-being, said the 50 Moving Forward program is much the same.

“For a lot of boomers, the Y was about childhood and having fun,” says Kauffman.  “Our 50 Moving Forward program invites boomers back to enjoy the activities they did in their youth.  If you took tap class, we have adult tap dancing classes.  It’s about playing and benefiting from the physical outlet of that play.”

Looks like I may have to squeeze back into a leotard and try some backflips.  On second thought, I think I’ll stick with my yoga pants and top and stay with downward facing dog pose.

Find the Me Time Monday program and more caregiver health and wellness information and tips in Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

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