Seven Super Foods for Super Caregivers

Photo: AlexMax/Dreamstime

Photo: AlexMax/Dreamstime

March is National Nutrition Month and while it is sometimes hard for the average person 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?

 

Super Foods for Super Heroes – The Caregivers

Photo:  Alexandra Petruk/Dreamstime

Photo: Alexandra Petruk/Dreamstime

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.

 

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.

  1. Eat the Rainbow

Photo: Bethany Van Trees/Dreamstime

Photo: Bethany Van Trees/Dreamstime

 

 

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.

 

 

 

 2. Berry Good

Photo: Dreamstime

Photo: 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.

 

 

 

 

 

 

 

3. Something’s Fishy

Photo: Dreamstime

Photo: 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.

 

 

 

 

 

4. Soy what?

Photo: MCWMeng/Dreamstime

Photo: MCWMeng/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).

 

 

 

 

 

 

 

 

5. Tea Time

Photo: Dreamstime

Photo: 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.

 

 

 

 

 

 

 

6. Got Milk?

Photo: Batuque/Dreamstime

Photo: Batuque/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 over age 51 should have 1,200 mg daily.

 

 

 

 

 

 

 

 

7. Sweet Dreams

Photo: Monkey Business Images/Dreamstime

Photo: Monkey Business Images/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.

 

 

 

 

 

 

 

 

 

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.

Cast of Caregivers Cover FINAL jpegTo 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.

 

 

You can also read Sherri’s other blogs about nutrition for caregivers and senior loved one’s nutritional needs:

Caregiver Weight Connected to Breast Cancer Risk

David Murdock – 90-year-old billionaire and caregiver

The Osmond Family’s Greatest Act – Winning the Daily Battle Against MS

How You Can Combat the Senior Hunger Crisis

 

©2016 Sherri Snelling

Nancy Reagan’s Caregiving Legacy

Nancy Reagan cropThe passing of former First Lady Nancy Reagan on Sunday had our CEO Sherri Snelling reflecting on her advocacy for family caregivers and especially for Alzheimer’s research. Read Sherri’s article that was published on PBS Next Avenue:

Nancy Reagan’s Caregiving Legacy

 

Glen Campbell’s Legacy: Music and Awareness of Alzheimer’s

Glen and Kim Campbell dreamstime_m_23475186 (2)

Glen and Kim Campbell right after his Alzheimer’s diagnosis

I was thinking about the Grammy Awards just a couple of years ago when Glen Campbell took the stage after telling the world he had Alzheimer’s disease. It was a powerful, moving moment.

I have had the privilege of interviewing Kim Campbell and her daughter, Ashley, with music legend about their caregiving journey for a husband and a father diagnosed with Alzheimer’s disease. The Campbell family’s poignant story is captured in my interview for this article that was originally published on PBS Next Avenue in 2014. The documentary which was released in 2015, I’ll Be Me, is now available on DVD.

Glen Campbell’s Final Farewell Tour Captured in Poignant New Film

 

 

Glen and daughter Ashley during his farewell tour

Glen and daughter Ashley during his farewell tour

Music Can Soothe the Soul of Caregivers and Their Loved Ones

Where words fail, music speaks. – Hans Christian Andersen

the-little-mermaid bookAs the world watches the Grammy Awards tonight I was reminded of a story about one of my favorite authors whose first love was song.

As a little girl I loved the fairy tales from Hans Christian Andersen, The Little Mermaid, The Ugly Duckling, The Snow Queen. While seemingly written for children, the stories transcend age and even mature audiences revered the chronicles of characters that were resilient in the face of many challenges and obstacles.

What many may not know is that Anderson’s first love was music. He was an excellent soprano and as a young teen entered the Royal Danish Theater in his native Denmark. But as his voice changed, he had to change his dreams and began writing about those whose passion had to find another course. Not all of Andersen’s stories had the typical happily ever after endings but they spoke on a deeper level to readers who could survive even if the spark of a dream was extinguished. It has been observed by Andersen biographers that when Andersen had writer’s block, he would listen to music.

 

 

Music That Feeds the Soul

Although music has been with us since the dawn of time, in the last few decades studies have proven that music as a therapeutic tool can increase cognitive function in Alzheimer’s patients, help premature infants gain weight, encourage autistic children to communicate, lead stroke patients to regain speech and mobility, control pain for dental, surgical and orthopedic patients and manage anxiety and depression for psychiatric patients.

Dr. Oliver Sacks, the renowned neurologist and psychologist at Columbia University Medical Center best known for his 1973 book Awakenings, which became an Academy Award-nominated film starring Robin Williams and Robert De Niro, and who also wrote Musicophilia: Tales of Music and the Brain, testified at the Hearing before the Senate Special Committee on Aging entitled, “Forever Young: Music and Aging,” and issued this statement:

“The power of music is very remarkable… One sees Parkinsonian patients unable to walk, but able to dance perfectly well or patients almost unable to talk, who are able to sing perfectly well… I think that music therapy and music therapists are crucial and indispensable in institutions for elderly people and among neurologically disabled patients.”

The Magic Brain Workout Is Music

Since music is associated with one of the five senses – hearing – which is controlled by the brain it makes sense that we should exercise our brains with music listening to spur cognitive function in the same way we use physical therapy to exercise our limbs, muscles and joints to regain mobility and physical function.

When it comes to Alzheimer’s patients, studies have shown that music reduces agitation or improves behavioral issues such as violent outbursts.  In one pilot program, 45 patients with mid- to late-stage dementia had one hour of personalized music therapy, three times a week, for 10 months, and improved their scores on a cognitive-function test by 50 percent on average. One patient in the study recognized his wife for the first time in months.  Another music therapy study showed that stroke victims can learn to walk and use their hands again.

I recently wrote an article for PBS Next Avenue about a singing app, SingFit, that not only helps dementia patients but many seniors in assisted living environments as well as the family caregivers caring for a loved one with Alzheimer’s at home.

And, music therapy is not just used with older patients.  When it comes to those children diagnosed on the autism spectrum, music therapy allows these children to develop identification and appropriate expression of their emotions – music becomes the universal language.  Many people with diagnoses on the autism spectrum have innate musical talents so music therapy can give these kids a sense of accomplishment and success

When I spoke to Holly Robinson Peete, the successful actress, talk show host and singer, about her son R.J. who was diagnosed at age four with autism, she said he loves music and he has even recorded a song.  In fact, Holly finds music a great way for her entire family to connect with R.J. and to enter his world.

She told me, “I think music makes him more comfortable – it is a way for R.J. to communicate without being judged.”

A new YouTube song, Dignity by Anderson and Petty, also helps us understand the stigma of Alzheimer’s disease and how music can help erase those barriers. All proceeds from the song go to the Alzheimer’s Society, the leading UK dementia research and advocacy organization.

Music as therapy is not just for your loved one.  We know that caregivers encounter increased stress over caring for a loved one.  Since studies show that listening to music can lead to increased secretion levels of melatonin, a hormone associated with mood regulation, lower aggression, reduced depression and enhanced sleep.  Using music to cope with these common caregiver complaints can be a welcome relief to caregiver burn-out.

Groovin Puppy dreamstime_3978556 (2)How to Use Music in Your Caregiving Plan

Although the 2008 documentary Young @ Heart, showcased a chorus of 80-year-olds singing Beatles, Rolling Stones and Sonic Youth cover songs, most experts agree that with an older loved one it is best to choose music that reminds them of an earlier, happier time in their lives.

  1. Discover the “happy times tunes”: Talking to your loved one about happy times in their life and understanding the music associations with that time are essential.  Whether it is big band, gospel, rock ‘n’ roll, country, opera or blues, find out what made your loved one happiest.  Most older loved ones, especially Alzheimer’s patients who retain long-term memory as opposed to short-term memory, find tunes from their youth the most joyful but be careful.  Music can also evoke sad memories.  One Holocaust survivor in a pilot program reportedly became very upset upon hearing a Wagner opera which reminded him of that era of his life.
  2. Engage younger generations: You can help create emotional intimacy when spouses and families share creative music experiences.  Whether it is downloading songs from iTunes, creating a Pandora play list or using the latest technical creation for digital music files, engage your kids in interacting with their grandparent or sibling with special needs to choose their favorite music.
  3. Pick the right setting: It may not be as simple as turning on a radio.  The radio can be distracting with constant advertising that breaks the peace of music.  Instead, try internet radio like Pandora channels, or use an iPod or CD player instead.  And, be careful with headphones – some may take comfort in the privacy of headphones while others will become irritated or uncomfortable.   Also, consider live music situations carefully.  For author Gail Sheehy, being able to take her husband, who was suffering from cancer, to a last jazz night out on the town was a gift she will always treasure.  But, for special needs children and some older adults – the unsettling activity of a live concert or band can be frightening.
  4. Let your music play: As a caregiver music is your therapy as well. Whether it is creating your own playlist to lift your mood when you have a “down day” or just taking pleasure in watching your loved one become engaged, music can make your heart soar.  Celia Pomerantz, author of A Mother’s Daughter’s Journey, found that her mother, who grew up in Puerto Rico, loved a certain era of salsa music such as Tito Puente.  She created song lists of her mom’s favorite tunes while her mother was in the nursing home.  Celia became enchanted as her mother blossomed into the woman residents called “the dancing queen.”  The joy of music and watching her mother dance lifted Celia’s spirits about her mother’s Alzheimer’s diagnosis.
  5. Find a professional music therapist: The American Music Therapy Association (AMTA), a non-profit organization that represents over 5,000 music therapists, corporate members, and related associations worldwide offers information about music therapy studies and a listing of credentialed music therapists that offer services in institutional, residential and private home settings.

Music can both evoke and create memories that last forever.  I close with this heartwarming story from the AMTA web site:

When a couple danced together for the first time after five years of the husband’s deterioration from probable Alzheimer’s disease, the wife said: “Thank you for helping us dance. It’s the first time in three years that my husband held me in his arms.” Tearfully, she said that she had missed him just holding her and that music therapy had made that possible.

© 2016 Sherri Snelling All Rights Reserved

An NFL Wife Tackles Dementia

Sylvia Mackey bio photoAs millions tune in to the Super Bowl this Sunday, I am cheering for one football wife who tackled her husband’s dementia with a game plan to keep their lives as normal as possible and in the process found her calling as a caregiving advocate.   Her passionate plea to the NFL, one of the most powerful organizations in sports, resulted in the “88 Plan,” a break-through long-term care plan that gives security and support to former players and their families when it comes to brain-related illness.

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

 

 

 

 

For Love of the Game and the Man

When it comes to the gladiators of the gridiron, he was the Charlton Heston or Russell Crowe of his day.  But, in the end would be his wife – on the sidelines of his entire career – who would become the warrior at the center of the action.

When John Mackey, No. 88, was inducted into the Pro Football Hall of Fame in 1992, he was only the second tight end to receive the honor.  He was and still is considered one of the best tight ends to ever take the field.  In fact, Mike Ditka, himself a Hall of Fame player and the first “pure” tight-end to be inducted into that rare club of exceptional players, stated that Mackey should have been first.

john-mackey nfl baltimore colts from WebAs a Baltimore Colt, where he played all but the last year of his career, John scored one of the most famous plays in NFL championship history.  It was Super Bowl V played in 1971, that John caught the nail-biting pass from quarterback Johnny Unitas that first careened off the hands of the opposite team’s player, grazed the fingertips of his teammate and finally wound up safely in the arms of John who then ran it for a then- record 75-yard touchdown.  It was this decisive play that helped the Colts beat the Dallas Cowboys and won John his coveted Super Bowl ring.

Twenty-one years later, as John took his place in football’s pantheon of great players for his Hall of Fame induction ceremony, right by his side was the woman who had been in that same spot since his college playing days, his wife, Sylvia.  Theirs would prove to be a true love story, challenged only by a devastating medical diagnosis.

Little did either John or Sylvia know that day in 1992 that 14 years later, John’s toughest battles would be fought off the football field with his lovely wife serving as both tackler and blocker.  At age 65 John Mackey was diagnosed with frontotemporal dementia (FTD), a degenerative disease caused by the rapid deterioration of the frontal and temporal lobes of the brain.

 

Tackling Dementia

What makes Sylvia’s story one of inspiration is that this diagnosis could have sacked her (in football parlance) but instead she did not let this devastating news knock her down.  One incident that highlights the special challenges that dementia caregivers face was played out at the Baltimore/Washington International Airport.

“John and I were on our way to the Super Bowl – we never missed one and I was determined this was something we were going to continue to do – it always made John happier as we got ready for these annual trips,” said Sylvia.

But, this year was different.  There was an incident with the TSA airport security that almost took them both down – literally.  Her husband, proudly wearing his Super Bowl ring and trademark cowboy hat, refused to remove these items and place them on the conveyor belt to be scanned.  In his mind, he did not understand that there had been a 9/11, he did not understand why they did not recognize him, and ultimately he thought they were trying to rob him of his precious possessions.

As John grew more frustrated with the TSA agents who, unaware of his diagnosis, thought he was just being a belligerent traveler, the agents grew increasingly irritated and finally tackled him but not after chasing the six-foot two-inch 220-pound former football player who dragged the agents several feet through the airport until several more agents joined in, handcuffed him and took him off to jail.

All the while, a tearful and frightened Sylvia was trying her best to explain to the agents and the curious onlookers that her husband was the NFL great and one of Baltimore’s favorite sons, John Mackey, that his illness meant he had no ability to understand what was happening, and ultimately she begged the officers to let her proud husband go.  She collapsed while they dragged her confused husband away, and thought to herself, “I don’t know if I can do this anymore.”

Hemingway wrote that “Courage is grace under fire.” 

When Sylvia caught up with her husband at the police station, John was back to his typical, jovial, social self – signing autographs for many of the police officers who finally recognized the NFL great.  It was at this moment as her husband basked in the bright light of his fame, that she realized she could not give up on her husband or herself.  That is when her courage took flight.

Instead of deciding that attending future Super Bowls or other travel would be out of the question, Sylvia got to work contacting the head of TSA at Baltimore/Washington International.  She explained her situation and asked for his help to allow her husband to travel – especially to the sporting events and autograph signings that he truly lived for and were important to maintaining some type of normalcy in their lives.

The TSA executive designed a plan with Sylvia to have John brought through a private area where they could scan him without incident and without his having to remove items precious to him.  In addition, the TSA executive also would contact the TSA executive at the arrival airport to explain how similar treatment of John upon his return flight out of their airport would be helpful to avoid any similar, dramatic incidents that neither party wanted.

And, these special plans are not just for those with famous last names.  One lesson all caregivers can take from Sylvia’s travel strategy is to plan ahead and ask a lot of questions.  Most airports will work with caregivers on the special travel needs of their loved ones.

The Final Play

JohnandSylviaMackey (2)Sadly, John Mackey lost his battle with dementia and passed away in 2011.  A few years before losing her husband, Sylvia had written a passionate letter to then NFL Commissioner Paul Tagliabue asking for more support for retired players when it comes to their long-term-care (LTC).  In his decade-long career, Mackey made about $500,000 – a salary that many back-up players make in one season today.  The LTC plan was championed by current Commissioner Roger Goodell and was adopted by the NFL in 2007.  The “88 Plan,” was named to honor Mackey’s jersey number and provides retired players suffering from Alzheimer’s disease, dementia, ALS or Parkinson’s disease with $88,000 annually for long-term care or adult day care or $50,000 to secure care at home.

Today, Sylvia is a board member of the Association of Frontotemporal Degeneration (AFTD) and speaks to caregivers across the country about the impact of dementia on families.

As the Giants and Patriots prepare to square off in Indianapolis in Super Bowl XLVI, Sylvia’s message to all caregivers on this game day – and every day – is to “Prepare.  Prepare.  Prepare.”

This is an excerpt on Sylvia Mackey’s story from Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care

Cast of Caregivers Cover FINAL jpeg

Heart Health By the Numbers

Heart Monitor dreamstime_m_4176220 (2)Every October we are immersed in a sea of pink – the color for breast cancer awareness –  yet the No. 1 killer of women in America remains heart disease.  In fact, twice as many women die from stroke or cardiovascular disease than all cancers combined, including breast cancer.  More than 1 in 3 women will die from heart disease this year – one every minute.

This February, the American Heart Association kicks off its annual Go Red Campaign in an effort to paint the town red and get women to stop and understand the truth of their heart disease risks.  Over the last 10 years the campaign’s success has paid off with amazing results:

  • More than 627,000 women’s lives have been saved through awareness and education – that is 330 lives per day
  • Almost two million women have completed the Go Red Check-up – a 10-fold increase since 2003
  • Women have changed their heart risky behaviors – smoking has decreased 15 percent, 1 in 2 women have increased their exercise and cholesterol levels are 6-18 percent lower for those with readings over 200

“Women who Go Red have the awareness and are more empowered to make lifestyle changes,” says Dr. Suzanne Steinbaum, Go Red cardiologist and author of Dr. Suzanne Steinbaum’s Heart Book:  Every Women’s Guide to a Heart Healthy Life.  “Nine out of 10 of the women who visit our web site have made at least one healthy behavior change. But we still need to spread the word because there is a disconnect between women knowing about heart disease as the No. 1 killer and understanding their personal risk.”

One woman who became the most unlikely poster woman for heart disease is Dianne Kane-McGunigle of Quincy, Mass.  The 53-year-old platinum blonde stunner was always fit and healthy working as a personal trainer and fitness instructor and running marathons on weekends.  The mother of two had grown girls had always watched her numbers – things like weight, cholesterol and blood pressure and according to her doctor was as healthy as a woman at least a decade younger.

But one day last year, Dianne clutched her chest, hit the floor and found her police officer husband rushing her to emergency.  All she could think about was, “Please don’t let this be bad – I haven’t had grandchildren yet.”

“I come from tough Irish stock and in retrospect I was overlooking some small warning signs because in my family you just tough it out,” says Dianne.

A couple of days before this emergency, Dianne had experienced some acid reflux and her forearms were achy and kind of numb.  She chocked it up to pushing herself too hard in recent workouts.  But the night before her attack she had tiny spasms in her heart and she started sweating and feeling nauseous.  Next thing she knew she was on the floor and then in the hospital.

“Heart disease in women often presents differently than what we see in men,” says Dr. Steinbaum.  “It can be a sudden chest pain, such as what Dianne experienced, but it can also be more subtle – shortness of breath, jaw pain, back pain, flu-like symptoms, difficulty sleeping and the symptoms Dianne experienced such as nausea and vomiting.”

In addition, women who are caregivers – caring for an older parent or spouse with a devastating disease – are at greater risk for heart disease because of the prolonged emotional stress of caregiving, neglect of their own health and wellness needs and a tendency to adopt or rekindle bad habits such as smoking.

The ER doctors ran tests and told Dianne she was fine and was probably just experiencing a panic attack or had over-exerted herself at the gym.  But Dianne knew better.

“If I have any message for women out there – it is to be an aggressive advocate in your health and the health of your loved ones,” she says.  “I knew something was really wrong and I wasn’t going to be ushered out of the hospital as someone who just had a simple panic attack.”

She begged a kind nurse to run more tests.  “I’m dying,” Dianne told the nurse.  “You have to help me.”

Additional tests found that indeed Dianne had suffered a heart attack known as a widow maker.  This is a type of heart attack where it is a stenotic left main coronary artery –  a blood clot prevents blood from pumping through the left descending artery often resulting in a massive, sudden, fatal heart attack.  This is the same kind of heart attack that Rose O’Donnell survived last year.

“My doctors and I truly believe if I had not been as fit as I was, I would surely be dead,” says Dianne.

The American Heart Association advises women to know five important things when it comes to heart disease:

1)      Don’t smoke. Period.

2)      Know your numbers – blood pressure, cholesterol, blood sugar (for diabetes risk which is tied to heart disease).

3)      Maintain a healthy weight and BMI (body mass index) by eating nutritiously.

4)      Have a consistent exercise schedule (it keeps your body fit and reduces stress).

5)      Know your family history.

L to R: Dianne and her twin sister, Denise

L to R: Dianne and her twin sister, Denise

It is #5 that hit Dianne like a Mack truck.  She had all the other items checked but she had no idea that in her family, the widow maker type of heart attack is on both sides of her family tree.

“That was my wake-up call,” says Dianne, who has an identical twin, Denise.  Now this Go Red spokeswoman talks to other women about heart health and understanding each of the five things that could contribute to a life-altering event.

“Go Red encourages women to wear your red and tell five friends about the heart disease risk factors,” says Dianne.  “I have five sisters, including my twin sister, and we’ve all talked about our family risk.  I Go Red for them.”

Push Reset on Resolutions – Use Me Time Monday for Caregiver Wellness

New Years Scrabble SMALL dreamstime_m_12065390 (2)The start of a New Year is the time we reflect on all the things we wanted to do or should have done yet didn’t get accomplished in the past year.  Thus, we resolve to address these self-makeover wishes in the coming 12 months. “Coulda, shoulda, woulda” is the statement we erase from our vocabulary in January as we hit reset on our bold, ambitious plans. Yet according to the University of Scranton researcher John Norcross and author of Changing for Good, one in four of us make a resolution for the New Year but after six months only 46 percent are still sticking with it.

With the hectic pace of the holidays over, the frenzy over buying gifts and seeing friends and family is done (at least for another 12 months).  You can finally breathe.  That is, unless you are one of the 65 million Americans who are caring for a loved one – the moment to put the world on pause and get a break never seems to happen.

Which is why I feel caregivers should exempt themselves from resolutions all together.  The very nature of resolutions is a reminder of how we failed. This is why I hate them.  I hate being reminded that I have somehow failed in an attempt to accomplish a goal.  Instead of focusing on the negative I try to remind myself failure can be a teacher.  Tragi-comic author, playwright and poet Samuel Becket famously said, “Ever tried. Ever failed. No matter. Fail Again. Fail Better.”  I couldn’t say it better.

Now, if you are a caregiver – you are NOT failing – you are accomplishing one of life’s precious goals – caring for another. You may not have enough time for yourself in your caregiving state is why my message to all caregivers is to banish the New Year’s Resolutions (NYRs) and adopt my Me Time Monday (MTM) plan.

Making It Work

Monkey Teeth dreamstime_m_7590920 (2)1. Banish negativity

Richard Wiseman, a psychologist at the University of Hertfordshire in England, author of :59 Seconds and creative consultant to the TV show The Mentalist, says those who fail to keep their resolution have one common pitfall which is focusing on the downside of the goal. You suppress your cravings, fantasize about being successful, adopt a role model or rely on willpower alone. But these aren’t pleasurable experiences, they are torture and you will soon abandon them. He stated in an interview with The Guardian, “Failing to achieve your ambitions is often psychologically harmful because it can rob people of a sense of self control.”

For caregivers, resolutions are even harder especially since you are typically juggling many of life’s balls – children, career and caregiving – and the ball getting dropped is the one that says “self-care.” Adding one more thing to your To Do List in 2014 is enough to make you cry (or scream, or throw something or grab that pint of mint chocolate chip ice cream that makes you feel better, until you step on the scale).  However, there is hope.

 

Jump for Joy dreamstime_m_5332888 (2)2.      Make a Plan Focused on Personal Joy

My solution for caregivers is to re-wire our brains to think “what am I giving myself” instead of “what am I not going to give myself.”  This year, you are going to give yourself a gift – that’s right – no cutting back, no cutting out and no cutting corners. If you follow these steps, you will not only improve your physical health but your mental health and that is a resolution worth celebrating.  You are going to take the remote control of your life back.

 

 

 

 

Monday calendar dreamstime_14224102 (2)3.      Use My Me Time Monday℠ Method

When you become a caregiver, you often feel like you entered one of today’s popular reality TV programs – it is like Survivor and The Amazing Race all at once. Instead of frantically looking for clues, or worrying about what the tribe will say  let’s call your 2014 reality show Me Time Monday and there are 52 episodes (one each Monday).

 

 

What is Me Time?

If you are asking, “What is Me Time?” then we really have to do an extreme makeover on you. Me Time is a concept that has been written about by CNN, Forbes, WebMD and advocated by many of the self-help gurus and health professionals I admire such as Dr. Oz, Louise Hay, Dr. Andrew Weil and Dr. Alice Domar. It is the essence of self-care which is the balance you need when you are caregiving.

Me Time is how you define it. First of all, you need to make a list of all the things you love to do that are just for you. These are probably things you have abandoned or at least don’t get to as frequently if you are caregiving.

It helps to think about things you loved to do as a kid (bike riding, hopscotch), or activities you enjoyed when you had no pressing responsibilities (such as kids, a job, a husband or a loved one to care for).  Your Me Time may be gardening, reading a good book or magazine, painting or sculpting, getting a mani/pedi, going for a scenic drive or perhaps it is even more youth-oriented such as diving into a new pile of snow or ice skating or walking along the beach collecting seashells (my favorite). Make sure you only list things you love that are just for you – if you wrote down exercise but it’s something you feel you have to do rather than love to do, it’s NOT Me Time.

Why Monday?

Monday is part of our cultural DNA – for most of us, it is the start of the work week, the school week and we feel renewed energy to start something after a nice weekend break. The nonprofit Monday Campaigns was founded in 2005 in association with Columbia University, Johns Hopkins University and Syracuse University in order to apply marketing best practices to public health challenges. According to the research, the Monday Campaigns show a projected 74 percent of American adults over age 25 believe giving healthy intentions a Monday start will make them more lasting throughout the week. Part of The Monday Campaigns is Caregiver Monday, a specific campaign targeted to helping the nation’s caregivers take care of themselves.

“Day in and day out, millions of caregivers give so much of themselves caring for their loved ones that they often neglect their own health and well-being,” says Sid Lerner, founder and chairman, The Monday Campaigns. “Caregiver Monday encourages them to use that first day of each hectic week as their recharge day, to refocus on their own condition to better serve their dependent parent, child or spouse.”

Your Me Time Monday Checklist

Plan B dreamstime_m_21540655 (2)1. Write it down.  Put your Me Time Monday activity on sticky notes. Post these notes on your refrigerator, your bathroom mirror, in your wallet, on your smartphone, on your car dashboard – anywhere you will see the words every day.  These are love notes to yourself.

 

 

 

ca. 2003 --- Baby Steps --- Image by © Royalty-Free/Corbis2. Take baby steps. If your Me Time is taking a 30-minute walk to enjoy nature and outdoors (a great stress reliever), start with buying new walking shoes on your first Monday (it’s all about the shopping for me).

The following week it may be getting just a few minutes to walk around the block – you don’t have to achieve 30 minutes on Week 1 – just get started.  Once you get in the groove you will find you plan your Me Time because of the comfort it brings you.

If you miss a week – don’t beat yourself up.  Evaluate what derailed you and see if you can eliminate the obstacle the next week.  What’s great about Me Time Monday – you have 52 chances to stay on track! And you don’t have to do your activity on Monday – just use Monday as your “check in” point for the week – do you know what you are going to do and how to find that time?

 

Train tracks dreamstime_m_10769462 (2)3. Track your progress. Put a little heart on your weekly calendar when you do your Me Time or tell a friend who can be your cheerleader about your plan and let them applaud your weekly progress (and help give you a caregiving break so you can get your Me Time – see Lotsa Helping Hands as a great way caregivers can get help to get a break).  Getting reinforcement – whether through a friend or seeing a lot of hearts on your calendar will keep you motivated.

 

 

 

Mountain Top dreamstime_m_20665256 (2)4. Live in the moment. When you are practicing your Me Time take a few minutes to really feel it. Close your eyes and put your imaginary remote control on “Pause.”  Feel everything around you. Stop and try to use each of your senses in what you are doing.  Can you see yourself happier?  Do your shoulders relax? Do you feel a little more refreshed? Do you hear the sounds around you?  Do you smell the wonders of your environment? Do you feel re-energized so you can keep caring for everyone around you because you took a little Me Time? Sensory cataloguing is a great way to revisit your Me Time and re-wire your brain to crave that Me Time so it becomes essential to your well-being.

 

 

Remote Control dreamstime_m_6705349 (2)Now push “Play” on your imaginary remote control and let your Me Time Monday reality show begin!  To view the Me Time Monday videos including how celebrities find their Me Time – visit our Caregiving Club YouTube channel.

 

 

 

 

Note:  This blog is adapted from A Cast of Caregivers – Celebrity Stories to Help You Prepare (sold on Amazon, Barnes & Noble and other online retailers and booksellers).

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Suze Orman Shares Her Cost of Caregiving Story

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

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

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

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

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

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

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

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

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

The Real Costs of Care

Photo courtesy of Suze Orman

Photo courtesy of Suze Orman

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

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

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

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

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

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

Suze’s Sage Financial Advice for Caregivers

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

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

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

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

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The C-A-R-E Conversation Series

 

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In Sherri Snelling’s top-selling book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, the chapter on how to have the C-A-R-E  Conversation has become one of the highlights of the book and in Sherri’s speaking engagements. Coming in late 2016, Sherri’s next book, The C-A-R-E Conversations, will be published.

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The reality is having conversations, whether it is with an aging parent, an ill spouse, our siblings, our kids, a boss or co-worker, friends and others are difficult. We avoid these conversations but this silence can lead to confusion, frustration, anger, depression and other emotions that ultimate impact a caregiver’s health and wellness.

Learning to understand the issues and how the conversation sounds on either side of the talk are tools every caregiver needs. This year, Caregiving Club offers a monthly “C-A-R-E Conversation” article – excerpted from Sherri’s upcoming book.  We’ll give you tips and resources on how to have difficult conversations with all those around you when you take your caregiving journey.

2016 will be the year caregivers can say,

Let’s Talk!

Caregiving Is A Small World

Global heartCaregiving is a global phenomenon – affecting every culture, every society, every community worldwide.

Click here to read our CEO Sherri’s Snelling’s Huffington Post article on how customs in other countries may help American caregivers on their journey.

Joan Lunden’s Coast to Coast Caregiving Coverage

NewsletterAdI’ve had the privilege of interviewing Joan Lunden several times over the last few years. She is an inspiration – as a woman warrior battling breast cancer, as a mom of seven (!!), as a successful businesswoman and as a caregiver to her mom whom she lost in  2013. I  first met Joan on the set of a special TV program Joan hosted for RLTV, “Taking Care with Joan Lunden,” where Joan interviewed me as an expert on caring for an older loved one at home.  The following is an excerpt from my book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, which includes Joan’s caregiving story.

Wake Up Call to Caregiving

For 17 years throughout the 1980s and 1990s, she woke us all with “Good Morning America” as co-host of ABC-TV’s national morning show.  But, it was 10 years ago that Joan Lunden, the sunny, blonde, California-born and raised TV journalist received her own wake-up call.

She remembers it like it was yesterday.  In her words, “It 100 percent shook me up.”  It was back in 2005, that her brother Jeff, who had long suffered from Type II diabetes, passed away.  Joan had been caregiving for both her ailing brother as well as her then 87-year-old mother, Gladyce.

While her brother suffered the ravages of diabetes – blurred vision, headaches, operations on hands and feet, etc. – her mother, Gladyce suffered from signs of dementia and had several mini strokes over the years.  For both their safety and Joan’s peace of mind, she had purchased a condominium in the Sacramento, California area where Joan had grown up and paid for them both to live there together.

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

Joan was both a Sandwich Generation caregiver – one of the 24 million Americans caring for children and a parent simultaneously and thus, sandwiched between caregiving duties – and a long-distance caregiver.  More than 8 million caregivers care for a loved one long distance – whether they are two hours away or across the country as in Joan’s case.  This makes caregiving more difficult – you are not there every day to see the small things which can be warning signs that something is changing and your loved one needs more care.

Joan and her mother, Gladys

Joan and her mother, Gladys

The Sunrise, Sunset of Alzheimer’s 

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

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

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

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

Alzheimer’s disease, which affects more than 5 million Americans today, can also be a sneaky disease.  An older loved appears relatively healthy and fine physically but is suffering from dementia that can cause sudden mood shifts or other emotional problems, especially frightfulness and forgetfulness.  It is only through the activities of daily living that one sees how critical proper care becomes. The long-distance care Joan had ben providing her mom had given her blinders to her mom’s real needs.

Joan encountered what I call “Goldilocks Syndrome” trying out several facilities before finally finding the right environment for her mother’s health needs and happiness. After Gladyce suffered several falls breaking her foot, her rib, then hitting her head and needing staples did Joan realize a specialized care facility would be necessary.

The social worker at the hospital where Gladyce was treated for her falls put Joan in touch with a senior care facility advisor.  The advisor assigned to Joan assessed Gladyce’s needs and then took Joan and Gladyce on a tour of several facilities that she thought would work.  They settled upon a small residential care facility with just six residents in a large home setting.

Press Hat dreamstime_m_11320792 (2)Using Her Journalistic Instincts – Tracking Down Leads

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

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

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

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

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

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

Joan’s advice to all caregivers, current and future, is to take a page from her long-running morning show career.

“Have the conversation, start the dialogue, do the interview with your loved one,” she advises.  “And, most importantly, don’t stop communicating – talk to your loved one as often as possible, talk to their doctor, ask questions, talk to the facility administrators and health care professionals – stay on it .  It is the most important tool you have – it keeps you connected to your loved one and to the essential care needs they have.”

Joan Lunden People Magazine Oct 2014Joan lost her mother in 2013 but is following in her energetic mother’s footsteps. Taking on a new role as a breast cancer survivor, Joan’s lifelong healthy eating habits now include a non-GMO diet. As the poster gal for 60 being the new 40, Joan says her caregiving experience has given her new insights into the message of “prepare for the worst and hope for the best.”  Her inspirational attitude is captured in a book she co-authored about caregiving stories, Chicken Soup for the Caregiver’s Soul.

 

 

©2015 Sherri Snelling

The Difference in Caring for Moms versus Dads

African American Family dreamstime_m_4832256 (2)The Sandwich Generation is our focus this week. According to Pew Research,  47 percent of Americans  in their 40s and 50s are caring for both children as well as aging parents. While there are many books to help us understand the difference in raising a boy or a girl, there are not a lot of books which talk about the difference between caring for an aging mom versus an older father.

Read my article for PBS Next Avenue about “The Difference in Caring for Moms versus Dads.”

Holly Robinson Peete – Superstar Sandwich Generation Caregiver

hrp headshotWhen it comes to superstars in this game we call life, Holly Robinson Peete is a top draft pick.  An actress, talk show host, singer, author, passionate advocate, wife and mother, Holly appears to have that perfect existence.  But, even the most perfect pearls are formed by being tossed about in rough seas.

Holly’s perfect life has faced two unforeseen and often devastating blows.  While juggling a thriving acting career, marriage and motherhood, she was also caring long distance for her father who suffered with Parkinson’s disease and simultaneously learned that one of her twins had autism.

The Sandwich Generation of family caregivers – more than 24 million strong according to the National Alliance for Caregiving – is defined as someone who is sandwiched between generational care, caring for a child or children still at home while also providing assistance or full-time care to an older parent.  In Holly’s case, she is Super Sandwich Generation: dealing with a father with a progressive disease of the central nervous system, and raising twins, one who was healthy and active (her daughter Ryan), and the other (son RJ), who was withdrawn and showing the symptoms of a special needs child.

For some people, this double hit would be enough to bring you down before the game even gets started.  But, for Holly Robinson Peete, she learned to fight through to get to the goal line.

From Sesame Street to 21 Jump Street

It was in the 1980s when Holly was still in college at Sarah Lawrence in Bronxville, New York, that her father started showing the early signs of what would be eventually diagnosed as Parkinson’s disease.  He was only 46 years old.

Matthew-T-Robinson-Sesame-street w Big BirdHer father, Matthew T. Robinson, Jr. was a producer and also played “Gordon” on the award-winning PBS-TV children’s program Sesame Street in the ‘60s and ‘70s.  A decade later he went on to become one of the most prolific TV screenwriters for shows such as the wildly popular, The Cosby Show.  Just as her father thrived in TV, Holly came by the acting gene naturally.  In the ‘80s and ‘90s, she decided to give acting a go and was riding high on a career that saw her become a breakout TV star on 21 Jump Street alongside a then unknown Johnny Depp followed by her star turn on Hangin’ with Mr. Cooper.  During this time, since Holly’s parents were divorced, it was up to Holly and her brother to support their father as his disease progressed.

It is estimated that 1 million people are diagnosed with Parkinson’s disease (PD) and each year there are 60,000 new cases in U.S.  This neurodegenerative brain disorder is characterized by a progressive destruction of cells in the central nervous system that reduces supply of dopamine causing nerve cells to fire incorrectly and causing patients to lose control of their normal body movements. While later stages of the disease are devastating, early warning signs can be subtle and progress gradually.

Not every PD patient has the same symptoms. Some experience poor balance and frequent falls, rigidity or muscle stiffness, tremors, and Bradykinesia which is the slowing down or loss of movement (shuffling steps, loss of one arm swing when walking, and difficulty or inability to turn the body).

“My first reaction to my dad’s diagnosis was ‘what is Parkinson’s’?” says Holly.  As a young college student she raced to the library to find out everything she could about the disease. “I saw two words in the books I read:  neurological and incurable.  I felt helpless and in a dark place and it was hard, this was in a pre-Google period and there was no Michael J. Fox or Muhammad Ali who had raised awareness about Parkinson’s.”

Double Dose of Devastation

While still providing care to her dad, Holly’s career was taking off and so was her love life.  She had fallen for Rodney Peete who had been a superstar college football player at USC and one of the NFL’s best quarterbacks with a 16-year career playing for the Philadelphia Eagles, Washington Redskins, Dallas Cowboys and Carolina Panthers.  They were married in 1995 and two years later Holly was a sought-after actress, NFL wife and new mom to fraternal twins Rodney Jackson and Ryan Elizabeth.

It was at this exciting time for Holly, that life gave her two blows.  Her father’s illness was progressing to a point where he needed around the clock care and Holly and her brother decided he needed to live in a special care facility.   Since Holly lived in Los Angeles and her father was in New York, this made Holly one of the nation’s 8 million long-distance caregivers.

“The day we moved my dad into the facility was singlehandedly the worst day of my life, to this day I still have regrets about the decision but there really were not a lot of choices,” says Holly with the pain still evident in her voice even though this was almost 13 years ago.  She had her twins, a husband who was on the road for six months out of the year and she was pregnant again.  “The guilt has never really gone away but I don’t hold myself accountable anymore – it was a hard choice but really the only choice.”

cover of autism file magazine Apr 2012It was during this painful period in Holly’s life that her three-year-old son, RJ, was given a devastating diagnosis:  autism.

“I know it’s a cliché but when we were told about RJ, my life just stopped right there in that doctor’s office,” says Holly.  “I call that day the never day – we were told all the things my beautiful baby boy would never do and at first I felt 10 times more than hopeless.”

Holly recalls how the diagnosis of her son was very different from learning about her dad’s disease.  “Even though my dad was young when he was diagnosed with Parkinson’s, it was totally different to hear that your three-year-old child will never really do anything normal.”

Mars v. Venus

What happened next came out of left field for Holly.  Her husband Rodney had been “my rock while I cared for my dad,” always there to support his wife and the father-in-law who adored him.  But, suddenly with RJ’s diagnosis, Rodney became withdrawn, frustrated and definitely living in denial.

“This was the classic men are from Mars, women are from Venus scenario,” says Holly.  “Men and women just think and do things differently.”

Initially, Rodney was in denial about RJ and as is typical of fathers of special needs children, he distanced himself and was less involved in the daily struggle in part because he was still playing in the NFL which kept him on the road for months.

While it is estimated that 85 percent of parents with special needs children divorce, Holly actually thinks the distance saved their marriage.  “It gave me time to cope on my own without facing Rodney’s different attitude and ideas about RJ,” says Holly.  “Rodney originally thought RJ just needed more discipline, I knew it wasn’t about that at all.”

While Rodney retreated, Holly got to work.  She learned everything she could about autism in the same way she had educated herself about Parkinson’s disease.  Holly learned that autism impairs a person’s ability to communicate and socialize normally with others and often has a physical manifestation of repetitive behaviors.  Statistics showed that one in every 110 children has autism spectrum disorder (ASD) and symptoms can be subtle or significant.  She also learned that there is no cure for autism.

Given little hope by doctors for RJ’s ability to assimilate into normal childhood, Holly refused this dismal outlook for her son and turned to alternative measures.  She found a wonderful autism therapist, she established a gluten-free diet for RJ which had some very positive effects and she brought music into his life which she found soothed her son.

When RJ recorded his first music single, Holly believes it was a way for him to not feel “judged” as he often did during sports or other activities.  She also maintained as normal a life as possible for her other children, which in addition to RJ’s twin sister Ryan now included sons Robinson and Roman.

During this time, Rodney and Holly admit to a lot of foul plays with each other.  In reflection, Holly says, “I wish I had been more patient with Rodney and respectful of his denial but I was too focused on RJ.”  She credits Rodney for coming up with the winning game plan.

“Rodney had that ‘oh my god’ moment when he realized he could lose his family but he chose instead to enter into the fight and save us all.”  Holly said when she and Rodney got the same game plan going, everything changed.  Just a few weeks ago on Valentine’s Day, Holly and Rodney renewed their marriage vows with all four children as their attendants.

Photo: Christopher Voelker

Photo: Christopher Voelker

Team Peete Scores

Rodney Peete's book on the family's journey with his autistic son.Rodney credits an autism father support group with helping him understand that instead of being dismayed with RJ’s inability to operate in Rodney’s world, Rodney learned to enter RJ’s world.  The result was Rodney’s 2011 book, Not My Boy! A Dad’s Journey with Autism, which he hopes will help other fathers of special needs children who are struggling to understand their situation and create a “new normal.”

Holly co-authored a book for Scholastic with her daughter Ryan who wanted to help other kids learn about her brother’s autism.  The book, My Brother Charlie, gave Ryan a hero’s role in her brother’s daily challenges and won an NAACP Image Award.  MyBrotherCharlie book cover

And, together Holly and Rodney have built the HollyRod Foundation, originally created to support families facing Parkinson’s to honor her father now expanded to also help families living with autism in recognition of the lessons the Peetes have learned from RJ.

Her relief from the guilt she says is inevitable for all caregivers comes from the impact of the HollyRod Foundation that helps families just like her family needed answers and hope.  “At some point, you take your guilt and you move on and I did that by paying it forward,” says Holly.  “Knowing that my family can help others and maybe ease their caregiving journey is the best gift of all.”

Spoken like a true superstar.

 

 

Author’s Notes:

Sherri has had the honor to interview Holly several times, watch one of these interview from the red carpet at the Carousel of Hope Ball 2013:

Carousel of Hope Ball 2013 – Celebrity Interviews from the Red Carpet

 

 

photo (2)Sherri and Holly were also the keynote speakers at the 2014 Astellas employee event in Chicago

 

 

 

 

 

 

Sherri Snelling interviewed Holly Robinson Peete for her book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

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©2015 Sherri Snelling