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Our look at caregiving takes a celebrity twist for Father’s Day. We’re spotlighting the high-profile dads who have been cared for in their last years by their adult children while also looking at celebrities who have cared for their fathers. Whether fathers, mothers, sons, daughters, we are all affected by caregiving – either as the care recipient or caregiver.

According to the 2015 report from AARP and the National Alliance for Caregiving, one-third of those over age 50 receiving care from a family member were men – mostly dads being cared for by an adult child.  And, with more men stepping into caregiving roles – 40 to 45 percent of caregivers are now men according to recent findings from AARP and Pew Research Center – it’s not just daughters caring for fathers but sons as well.

Read Sherri’s Forbes article: “The Rise of the Male Caregiver”

And while statistics show women outlive men on average three to four years, according to the Assisted Living Federation of America, there is a 7 to 1 ratio of women to men in assisted living facilities and a 10 to 1 ratio in nursing homes. This could be based on women living longer than men but anecdotally it also points to a trend in widowed or divorced fathers being cared for at home by an adult child or even moving in with one of his children.

Read PBS Next Avenue article: “The Difference in Caring for Moms versus Dads”

In celebration of Father’s Day, we spotlight both high-profile dads who have been cared for by their adult children as well as celebrities who have cared for their fathers.

Happy Father’s Day!

Caring for Celebrity Dads

Radio personality Casey Kasem (left and in center on right) and two of his older children, Mike and Kerri, in 2005. (Photo by Amanda Edwards/Getty Images)

Casey Kasem

Losing his battle with Lewy body dementia in 2014 at age 82, the iconic radio host of “American Top 40” countdown of the greatest musical hits which broadcast from 1970 to 2009, left a legacy of entertainment but also elder abuse. His story is a cautionary tale for caregivers on why it is so important to have the family conversation before it is too late. While his mind was locked in the fading memories that dementia brings, his second wife and adult children were locked in legal battles over his care. His adult children from his first marriage

fought for and won custodial guardianship only to face ongoing challenges with their stepmom in caring

for their father the last years of his life.

Read Sherri’s article for Forbes on Casey Kasem’s legacy

 

Steve in “Bullitt” and with his two young children in the ’60s

Steve McQueen

The uber cool quintessential American male, actor Steve McQueen of films including Bullitt, The Great Escape and The Thomas Crown Affair fame among many other memorable movies, battled the last year of his life with mesothelioma. Seeking alternative treatments in Mexico, his 20 –year-old son, Chad, 21-year-old daughter, Terry, along with his third wife, Barbara Minty, were by his side when he passed. Terry and Chad had spent a lot of time with their father, especially in that last year of his life helping to care for him. In fact, Terry (who lost her own health battle in 1998), told TV talk show host Sally Jessy Raphael that her father only went to Mexico for experimental treatment because of his children.  After being told by Los Angeles cancer experts that he only had months to live, he decided to try everything to find a few more years with his kids and wife. Sadly, he lost his battle all too soon although his enduring legacy is being kept alive by his son, Chad.

Omar Sharif in a publicity shot from “Funny Girl” and in later years with son Tarek

Omar Sharif – Egyptian-born heartthrob with eyes that melted your soul, actor Omar Sharif played a Russian, an Arab and a German Jew as star of some of the most memorable films of all-time including Dr. Zhivago, Lawrence of Arabia and Funny Girl. After years on the silver screen, the actor’s son, Tarek-El Sharif, noticed his father’s memory loss when recounting stories of his most memorable movies. Tarek cared for his father, who divorced his mother in 1974 and never remarried,

before losing him to Alzheimer’s in 2015 at age 83.

Celebrities Caring for Their Dads

Laura Bush – The former First Lady played caregiver to both her older father and older mother as their only child. While campaigning with her husband George Bush who was running for governor of Texas, her father was diagnosed with Alzheimer’s disease. Laura played back-up to her mother who was primary caregiver, but 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.”

Read about other First Lady Caregivers

Gloria Estefan – Grammy-winning singer, Gloria Estefan, has made us want to get up and dance ever since she came on the scene with the “Miami Sound Machine” which included her producer husband, Emilio. Now with her oldest daughter singing alongside mom, family values have always meant a lot to Estefan. Her father, a Cuban immigrant who escaped Castro’s regime for a better life in America where he joined the U.S. Army, was exposed to Agent Orange while serving in Vietnam resulting in his multiple sclerosis (MS) diagnosis years later.  Estefan told Huff Post in 2015 of her caregiving role for her dad and her love of veterans and America:

“The minute I could do anything for the VA, including when my dad was in the VA hospital the last five years of his life… my mom and I would go every day to help the nurses in the nursing room home floor because there were so swamped,” she added. “We would feed my dad and bathed him and take care of him, but then we would help them in whatever way needed, to feed the other vets that were there and help them out. That was when I was a teenager. So I’ve been involved [with the VA] on a personal level for many, many years.”

Willie Geist – Host of NBC Sunday Today and MSNBC’s Morning Joe, followed in his father’s journalistic footsteps. His dad was a reporter for the New York Times and is a financial reporter for CBS News. But when it comes to dealing with a devastating diagnosis, Willie’s dad, Bill Geist, took an oath of silence for 20 years. In 1992, Bill Geist was diagnosed with Parkinson’s disease, a secret he kept from the public and most of his family until he “came out” in 2012. Before Muhammad Ali (who was diagnosed in 1984 although a recent scientific report states he was probably suffering from the disease since 1978) and Michael J. Fox (who was diagnosed in 1984) made Parkinson’s a household word, Geist felt the stigma on his career would be intolerable. While the older Geist’s wife is his main caregiver, since father and son live in the tri-state area, it is his son who will be there to support his mother as his father’s disease progresses.

Tess Gerritsen – Best-selling author of the crime novel series, Rizzoli and Isles, which was also made into a high-rated TNT TV show starring Angie Harmon and Sasha Alexander, Gerritsen found herself in another role as caregiver for a father with early on-set dementia.

Read more in Sherri’s 2013 interview with Gerritsen

Marg Helgenberger – Before she starred in films such as Erin Brokovich and Mr. Brooks and spent years on TV on top-rated shows such as China Beach and CSI, Helgenberger was just a Northwestern University college student when her father was diagnosed with an aggressive form of multiple sclerosis (MS). During this same time, Helgenberger’s mother was diagnosed with breast cancer, thrusting the young woman into her caregiving role for both parents. She lost her father only five years after his diagnosis but still raises awareness for the disease through the Race to Erase MS Event and Nancy Davis Foundation.

 

Read an excerpt of Sherri’s book interview with Helgenberger

Richard Lui – He’s been an MSNBC and NBC anchor out of New York City for years but since 2014 he’s led a bicoastal life after becoming a caregiver for his father who lives in San Francisco and was diagnosed with Alzheimer’s disease in 2011. Lui is one of 16 million men nationwide – approximately 40 percent of caregivers – who are caregiving for an older loved one. He describes his caregiver role initially as the remote or long-distance caregiver, a role 8 million Americans are in today. Since working out his flexible work situation with NBC – being able to travel between New York City and the Bay Area – he is now back-up caregiver to his mom while they keep his father at home. In interviews, Lui has cited his family’s faith (his father was a

Presbyterian minister) and his better understanding of dementia in helping him be a better caregiver.

Rob Lowe – The perpetually youthful looking member of the ‘80s Brat Pack films who has created a canon of acting work in both TV (The West Wing, Parks & Recreation, Code Black) and movies (Austin Powers, Tommy Boy), Lowe has also played caregiver to a father and mother. While he lost his mom to breast cancer in 2003 (a disease that also took his grandmother and great-grandmother), he also cared for his father who successfully went into remission after his non-Hodgkin’s lymphoma diagnosis.

Michelle Obama – A true champion of the Sandwich Generation caregivers during her years as the nation’s First Lady, Obama knew all too well the toll of caregiving on children – both younger and older kids. As a young girl, she grew up and helped care for a father who was diagnosed in his early 30s with multiple sclerosis (MS). Although he coped with this devastating progressive disease that has no cures or effective treatments, she spoke in interviews of watching her brave, resilient father walk to work using two canes. Obama lost her father in 1991, but it was these early days of watching and caring for a father with a chronic illness that gave her firsthand knowledge of the plight of the nation’s 65 million caregivers.

Holly with her dad, Matthew Robinson, before he passed in 2002

Holly Robinson Peete – Long before she starred on “Meet the Peetes,” Holly was a young college student at Sarah Lawrence. Then one day, her world stopped. Her father called to share that he was just been diagnosed with Parkinson’s disease. While she didn’t know it then, this was Holly’s first step into caregiving and onto the path of being one of the nation’s top advocates for both Parkinson’s and autism (which affects her son RJ).

Read more in Sherri’s excerpted book interview with Holly

Michelle Pfeiffer – Famous as much for her amazing looks and acting talent as for her privacy and protection of her family, Pfeiffer has referenced in recent interviews that life journey of caring for older parents. In particular, Pfeiffer, who was noted to be close to her father whom she lost to cancer a few years ago, cites adopting a healthier diet to combat the ravages of chronic illnesses such as cancer and Alzheimer’s (which her mother suffers with). Living in San Francisco, an hour’s plane ride from Los Angeles where she grew up, made Pfeffier a long-distance caregiver for her father – a supporting role she played with her two sisters and brother who still live in Southern California.

 

David Hyde Pierce – A longtime advocate and champion for the Alzheimer’s Association, Pierce takes Alzheimer’s personally. His grandfather suffered with the disease, back when not much was known about a disease that affects more than 5 million Americans and accounts for 70-80 percent of all dementia diagnoses. Then his father George, an insurance salesman and amateur actor, was ravaged by a different dementia after he suffered a stroke in the early ’90s following heart surgery. While not officially diagnosed, Hyde Pierce’s father may have had vascular dementia, a common result for stroke patients, where the brain is damaged by impaired blood flow to the brain. After his mother died, Hyde Pierce along with his siblings became the care team for his father.

Watch Sherri interview David Hyde Pierce from the red carpet of an  Alzheimer’s Association event:

Caregiving Celebrities at the Alzheimer's Association "A Night At Sardi's" 2012 - YouTube

Madeleine Stowe – It’s hard to think of Madeleine Stowe being distracted by anything except Daniel Day-Lewis in The Last of the Mohicans. But this star of stage and screens small and large, became a young caregiver to her father who was diagnosed with multiple sclerosis while Stowe was not even in her teens. She recalls accompanying her father to doctor and other health care appointments, feeding him and helping to turn him in bed. At the same time, she was studying to be a classic pianist – keeping her at home and entertaining her father rather than socializing with her young peers. After losing her father when she was only 25, she only in recent years has turned her experience into advocacy. Partnering with the biotech company Genzyme, a developer of MS medicines, she helped launch Lights, Camera, Take Action on MS, an initiative designed to educate and empower the MS community to help manage the disease.

Sherri with Julianne Moore and Maria Shriver at AARP event

Maria Shriver – When it comes to celebrity voices on Alzheimer’s, none are more prominent than Maria Shriver’s. As a longtime, passionate advocate for the Alzheimer’s disease that afflicted her father, Sargent Shriver, she has become a warrior in the war to end Alzheimer’s. Including her work for the Alzheimer’s Association, her HBO documentary on the disease, her co-producing role in the film Still Alice that won Julianne Moore her Oscar, Shriver has recently launched Move For Minds with Equinox Sports Clubs across the U.S. – part of the Maria Shriver and the Women’s Alzheimer’s Movement. If anyone can move heaven and earth on this disease, it’s Maria Shriver.

Lea Thompson – Lea Thompson is currently bursting with family pride over directing her two daughters, Madelyn and Zoey Deutsch, in the independent film (also written by Madelyn), The Year of Spectacular Men. But it’s another family connection – to Alzheimer’s – that has made this TV (Caroline in the City) and film actress (Back to the Future), an advocate in the fight against this disease. Statistics show one in three seniors dies with Alzheimer’s and that plays out in Thompson’s family. She talks about both her stepfather and father-in-law suffering with Alzheimer’s, a disease which also afflicted both her maternal and fraternal grandmothers. Thompson is encouraged by the research and science being put into finding treatments and cures but also advocates for the family caregivers, like herself, to take good care of themselves.

Watch Sherri Snelling interview Lea Thompson about how caregivers can find “Me Time” like Lea:

Race to Erase MS Gala Event - May 18, 2012 - YouTube

Reese Witherspoon – Despite her impressive talent as an Oscar-winning dramatic actress (Walk the Line), comedy actress (Legally Blonde movies), and recent role as producer of HBO’s award-winning Big Little Lies series, Reese Witherspoon’s sunny, cheerful, successful life didn’t feel that way in 2012. It was that year that her Nashville, Tenn.-based parent’s marriage became tabloid headlines as her mother took her estranged husband back despite his bigamous marriage to another woman. What her mother seemed to know, after all she is a PhD and former pediatric nurse, is that her husband and Reese’s father was suffering from early on-set Alzheimer’s, a diagnosis not formally made or reported. However, he stated he did not know the woman he married (the union was soon annulled), he was found to be a hoarder and he was overspending straining Reese’s financial support for him. This heartache for Reese was two-fold:  To see her once prominent father, a former Naval Reserve otolaryngologist (ENT physician), ravaged by erratic and eccentric behavior; and to know that her beloved mother’s life was devastated by a husband she loved but whose memory was being erased. But Reese has dedicated herself to visiting Nashville as often as she can to provide care and support for her dad and her caregiving mom and to ensure her children have a relationship with their grandfather before his memories are..

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Peanuts cartoonist Charles Schulz famously wrote, “Happiness is a warm puppy.”

On April 30 we celebrate National Pet Therapy Day where our furry friends deliver more than happiness – they offer comfort for pain, companionship for isolation and cuddles and kisses that might be better than any medication.

A lifelong animal lover, our CEO Sherri Snelling, has long been an advocate for the therapeutic benefits that pets can provide to those with chronic illnesses such as cancer, dementia, autism and multiple sclerosis.

With so much focus on social isolation and disconnection, especially among our senior and special needs populations and family caregivers, a visit from a dog or cat or rabbit can lift the spirits of anyone of any age or hugging a pet after a long, stressful day fills our hearts and brings a smile to an owner’s face.

Read

Here are some of  Sherri’s recent articles on the power of pet therapy:

Healing Power of Pet Therapy – originally published on PBS Next Avenue

Robots vs. the Real Thing in Pet Therapy – originally published on PBS Next Avenue

Watch

We also created a Me Time Monday video on how Pet Therapy can benefit caregivers and their loved ones (watch for a cameo of Sherri’s pet therapy dog, Penny in this video!)

Caregiving Club Me Time Monday - Pet Therapy - YouTube

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April 10 is National Sibling Day. When it comes to caring for Mom and Dad, siblings can either form a strong care team or can be the cause of conflict. Understanding each sibling’s role and having the family caregiving conversation earlier rather than later can help make the caregiver journey a smooth ride for all family members.

But there is another side to siblings and caregiving: a study found that 18 percent of those caring for someone over age 75 were siblings caring for siblings. And, caring for young adults with disabilities or chronic conditions tend to be managed by siblings and are longer-term and more intensive.

Read

Here is an article from our CEO Sherri Snelling about siblings and caregiving:

The Sibling Caregiver – originally published on PBS Next Avenue

Also, read Kimberly Williams-Paisley’s new book, Where the Light Gets In – Losing My Mother Only to Find Her Again, about how she, her father and her siblings formed a cohesive care team for her mom with dementia:.

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Since April is National Stress Awareness Month, we put our spotlight on this silent killer.  In the best-selling book, The Telomere Effect, the authors found that one year of chronic stress takes six years off our lives. This is because our chromosomes have telomeres – the protective ends that look like shoelaces – that become frayed with chronic, unrelenting stress. This fraying actually changes our DNA and decreases lifespan. The good news is that you can begin today to manage your stress and start to repair your telomeres.

For caregivers, a National Alliance for Caregiving study found stress was the Number One challenge that impacted their health.  Stress is also the reason for 90 percent of all doctor appointments and according to a Commonwealth Fund Study, caregivers are twice as likely as the general public to develop chronic illnesses earlier in life due to the prolonged stress of caring for a loved one.

Stress is difficult to understand because so often is it invisible. Do you ever have your shoulders hunched? Is your tongue press against the roof of your mouth? These are just two of the invisible signs of stress that you don’t realize impact your overall health.

Finding ways to manage stress is essential for caregivers. Here are articles from our CEO Sherri Snelling – a national advocate on caregivers finding balance and help for stress relief:

Caregiver RX for Stress: 3 Steps to Me Time Monday – originally published on Huff Post 50

Caregiver Stress is No Joke

Caregiver Tipping Points – originally published on Forbes.com

Mars vs. Venus On Caregiver Stress – originally published on PBS Next Avenue

Mondays are the Prescription for Better Caregiver Health – originally published on Examiner.com

Caregiving Is A Small World After All – originally published on Huff Post 50

 

Watch

Two of our Me Time Monday™ videos focus on stress relief for caregivers and how to avoid burn-out:

Caregiving Club Me Time Monday Tip - How to Get Stress Relief - YouTube

Caregiving Club Me Time Monday How to Banish Burn-out - YouTube

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Caregiving Club realizes that caregivers have precious little time to read but we felt compelled to create our reading lists for you anyway.

You may only read a chapter at a time or pick up the book once your caregiving is done.  Or we hope those who have not yet stepped into the caregiving spotlight may read one of these books to help you prepare to care.

We’ve chosen our favorite books in the following categories (see below for full lists):  Family Caregiving, Spousal Caregiving, Alzheimer’s Caregiving, Caregiving and End of Life, Caregiving Spirituality and Inspiration, Caregiver Humor, Men As Caregivers, Caregiving Books for Kids and Caregiver Health & Wellness.

If we missed a great book you feel other caregivers should read, let us know.  Email us at: info@caregivingclub.com.

And, don’t forget to add Caregiving Club CEO Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Careto your library.

Happy Reading!

Family Caregiving List vApr 2018

Our Family Caregiving Book Pick of the Month:

Men as Caregivers Books vApr 2018

Our Men As Caregivers Book Pick of the Month:

Spousal Caregiving List vMar 2013

Our Spousal Caregiver Book Pick of the Month:

Alzheimer’s Caregiving Journeys List vApr 2018

Our Alzheimer’s Caregiver Book Pick of the Month:

End of Life List vMar 2013

Our End-of-Life Book Pick of the Month:

Caregiver Health and Wellness List vApr 2018

Our Caregiver Health & Wellness Book Pick of the Month:

Spiritual and Inspirational Caregiving List vMar 2013

Our Caregiver Spiritual & Inspirational Book Pick of the Month:

Celebrity Caregiving Journeys List vApr 2018

Our Celebrity Caregiver Book Pick of the Month:

Humor in Caregiving List vMar 2013

Our Caregiver Humor Book Pick of the Month:

Caregiving Books for Children List vApr 2018

Our Caregiver Book for Kids/Teens Pick of the Month:

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Caregiving Club by Sherri Snelling - 3M ago

Sherri is presenting at several conferences and is a featured speaker on upcoming Webinars, radio programs and podcasts.  Click here to see upcoming events.

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March is National Nutrition Month and while it can be a challenge to follow good nutritional guidelines, it is even harder if you are juggling your own healthy eating needs while caring for your loved one.

A study by the National Alliance for Caregiving shows that 38 percent of caregivers who feel their health have declined while caring for a loved one report weight gain or loss.  Skipping meals, eating fast food on the run, turning to non-nutritious snacks to cope with stress can all become part of a caregiver’s nutritional reality.

However, ignoring your own nutritional needs will impact your energy level, your ability to stay focused and alert and your physical and emotional stamina.  If your health starts to go downhill, it can be a slippery slope that can lead to you becoming as ill as or worse than the one you are caring for.  If you become sick, who will replace you to care for your loved one?

Alexandra Petruk/Dreamstime

Super Foods for Super Heroes – The Caregivers

Caregiving can be a superhuman role that can zap the physical and mental strength of even Wonder Woman.

When you are feeling overwhelmed, tired and stressed to the max, it is important to keep your powers at their peak.  Food is the fuel that can keep our bodies strong and our minds clear. If someone told you there was a pill you could take which will lower your cholesterol, reduce your risk of heart disease and cancer and enhance your mood, would you take it?  Well, it may not be a pill but those foods are available at your local grocery.

Bethany Van Trees/Dreamstime

According to WebMD, here is a grocery list of Super Foods that will ensure you remain a Super You. To make it fun, all you need to think about is “eating the rainbow” – choose colorful foods which typically provide the nutrients, fiber and other physical health needs to keep caregivers going strong.

Fiber keeps cholesterol in check and can aid weight loss since you’ll feel fuller. Look for beans, whole grains, fruit and vegetables.  I try to “eat the rainbow” daily – one food a day which is red, orange, yellow, green and blue makes it fun and easier to remember to add these super foods to your daily diet.

Dreamstime

Blueberries are great anti-oxidants and an anti-inflammatory that can lower your risk of heart disease and cancer as well as other chronic illnesses.

MCWMeng/Dreamstime

Omega-3 rich fish such as salmon, herring, sardines and mackerel help your heart,joints, memory and some medical professionals believe it can also reduce depression.  A National Alliance for Caregiving study showed that 91 percent of caregivers who say their health has declined suffer from depression.  If you’re not a fish fan, you can also find Omega-3 in walnuts and flax seeds.

Dreamstime

Soy such as tofu, soy milk or edamame, as well as almonds, oats and barley lower cholesterol.  In addition, oatmeal can help regulate blood sugar levels which is important for diabetic diets.  (However, if you have a family history of breast cancer, it is not recommended you add soy to your diet).

Dreamstime

Tea has been shown in several studies to lower cholesterol.  While the antioxidant power is the same in black tea as green tea; the green version has an added element which studies have found helps inhibit the growth of cancer cells.

Monkey Business Images/Dreamstime

Calcium found in dairy foods, salmon (again), leafy green veggies, almonds (again), asparagus and figs build strong bones and helps reduce the risk of osteoporosis – women overage 51 should have 1,200 mg daily. If you become lactose intolerant, which can happen with age, try soy or almond milk or take a Vitamin D supplement.

Dreamstime

Dark Chocolate – hallelujah!  Dark chocolate – at least 60 percent cocoa content – has eight times the antioxidants as strawberries and can help lower bad cholesterol (LDL) by up to 10 percent.  But don’t overindulge, 2-3 oz. a day will do it.

And, of course, don’t forget your daily multivitamin.

It is hard to be diligent about diet if you are caregiving.  But, if you can plan your grocery shopping on Mondays (part of your Me Time Monday plan) it might make it easier to remind yourself – every week – that you are as important as the person you are caring for.   Take along this list of Super Foods and stock up – it will help ensure you stay strong so that you can continue being a super hero for your loved one.

And check out the tips, recipes, nutrition information from the Healthy Mondays campaign (which is our partner in the Caregiver Campaign).

To read more about nutritional needs for seniors and family caregivers, get Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

©2018 Sherri Snelling

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March 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.  Today, 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 more than 30 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 at her college graduation with her mom and dad. She lost her father soon after this photo was taken.

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 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.

Marg from her “Ryan’s Hope” days

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 has brought her bright light in support of MS awareness at events for Race to Erase MS and other activities. I know whatever role Marg takes on – actress, advocate, caregiver – this star will continue to shine at whatever she chooses.

Race to Erase MS Gala Event - May 18, 2012 - YouTube

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.

Copyright 2013 Sherri Snelling

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Eating well is not about how well you look in your clothes or getting it together for that 20, 30 or 40-year high school reunion. It’s about daily energy, stamina, mental alertness, positive mood – all things the nation’s 65 million family caregivers need.

For March National Nutrition Month we turn our spotlight on the following articles:

Caregiver Weight Connected to Breast Cancer Risk

Super Foods: Eating the Rainbow for Better Health

Also read Sherri Snelling’s Forbes.com interview with Dole CEO David Murdock – the nonagenarian who feels that eating right can give you quality of life well after age 100:

David Murdock – 90-year-old billionaire and caregiver

Watch

And, our Me Time Monday video has helpful tips on getting the caregiver fuel we need through Super Foods

Caregiving Club Me Time Monday Tip - Super Foods - YouTube

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While the Philadelphia Eagles emerged victorious in yesterday’s Super Bowl match-up – the first in the franchise’s history – there’s another first the NFL has experienced in recent years. Sylvia Mackey, fearless wife of ‘60s and ‘70s Super Bowl hero, John Mackey, lobbied the NFL to adopt a long-term care assistance program for retired players who suffered with Alzheimer’s disease, Parkinson’s and ALS.  Called the “88 Plan” in honor of the jersey number of her late husband who died with frontotemporal dementia, Sylvia’s story is one of courage, humor and most of all advocating for the one you love.

Read our CEO Sherri Snelling’s interview for PBS Next Avenue with Sylvia Mackey

You can also read an extended version of Sylvia’s story in Sherri’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care

Watch more:

We also offer our Me Time Monday video that provide insights into the costs of caregiving to help you avoid what we call the “caregiving cost drain”

Caregiving Club Me Time Monday - The Costs of Care - YouTube

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