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A Cast of Caregivers

Balboa Press

Chapter One

Star Performances

I've been through it all baby, I'm mother courage. – Elizabeth Taylor

Star Performances

Celebrity Caregiving Journeys, Lessons Learned and "Me Time"

In the following pages you will read about some famous names and faces who have stepped into the same caregiving spotlight as you. Your first reaction may be, "But celebrities have all the money and resources in the world to ease the burdens of caregiving." While for some this may be true, the reality is that celebrities are still sons and daughters, wives and husbands, sisters and brothers, partners and friends. And the emotional caregiving journey is one they take with the rest of us. You will read about:

Holly Robinson Peete SuperStar Sandwich Generation Caregiver

A father with Parkinson's disease, a son with autism – Holly has been a caregiver across the life spectrum. This actress, singer, talk show host, author and advocate did not accept defeat by these challenging back-to-back caregiving situations; instead she made her mess her message. Holly talks about the emotional tolls: the guilt of a long good-bye to a beloved parent, the impact of caring for a child with special needs on a marriage and nurturing her family to create a new normal.

Sherri Snelling Joan Lunden

Coast to Coast Caregiving Coverage

This iconic TV morning show host became a mom of twins (for the second time!) at age 54, manages a career and business enterprise and cares for a mother with dementia who lives clear across the country – all at the same time. Joan Lunden gives us the headlines on being better prepared, really understanding your loved one's needs and keeping the lines of communication strong so everyone thrives.

Marg Helgenberger Collecting Clues on Caregiving

Before she was a film (Erin Brockovich) and TV star (CSI) she was a small town Nebraska girl with dreams of becoming an actress in the Big Apple. As this young starlet was finding her way, both of her parents were rocked by devastating illness – first her mom with breast cancer immediately followed by her father with aggressive multiple sclerosis. Marg talks about bridging the distance through these crises that brought her closer to family, home and her own heart.

Jill Eikenberry and Michael Tucker Cooking Up a New Caregiving Recipe

They left L.A. Law for a little R&R in the Italian countryside. However, Jill and Mike became unexpected co-stars as caregivers of her mother with dementia. Moving mom from Los Angeles to New York City became the little slice of the Italy they longed for and created the family affair that has been at the heart of their careers and lives.

Sylvia Mackey "Mrs. 88" Football Wife Tackles Dementia and the NFL

Her husband was considered one of the NFL's best tight ends earning credit for his Baltimore Colts' 1971 Super Bowl win and a place in the National Football League Hall of Fame. When knocked down by dementia, his resilient wife came up with a decade-long game plan to care for him. Along the way she also encouraged the NFL to support retired players and the families hit hard by brain-related illness resulting in the game-changing 88 Plan of health care benefits.

David and Alan Osmond Like Father, Like Son – In Perfect Harmony

The say lighting never strikes twice but for the legendary entertainment Osmond clan it did just that. Not only is David following in his famous father's footsteps as a musician, singer/ songwriter and entertainer, he is also living and thriving with multiple sclerosis which affects both father and son. Taking a look at caregiving from the perspective of the persons with the disease, these men talk about family, especially their wives at their sides, their faith and their power of positive thinking which they believe are the prescription needed to battle a chronic illness.

Alana Stewart Caring for An Angel

Some friendships are special but the bond between Texans turned California girls, Alana Stewart and Farrah Fawcett, took them on a journey neither expected. Across oceans and emotions, Alana and Farrah prove that girl power can be healing power even in the face of the devastating C-word. And in the aftermath of loss, Alana talks about carrying on after caregiving and how there are still footprints in the sand.

Their stories are unique but you will recognize yourself in their emotional journeys. They share their caregiving stories, the lessons they learned along the way and how they find their "Me Time" with you.

Holly Robinson Peete

Superstar Sandwich Generation Caregiver

When 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 the perfect life. But even some of the most perfect pearls are formed through 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 (PD) and simultaneously learned one of her twins had autism.

What struck me the most when I spoke to Holly is how she uses humor to rule her household. On the day we talked, the kids were on their way to Starbucks but called several times with questions about mom's order that cracked Holly up. She joked to me, "Do you believe how crazy it is to just get a coffee around here?"

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. You are 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 R.J.), who was withdrawn and showing the symptoms of a special needs child.

For some people, this double hit would be enough to bring them down before the game even gets started. But Holly Robinson Peete 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 at Sarah Lawrence College in Bronxville, New York, when her father started showing the early signs of what would be eventually diagnosed as Parkinson's disease. He was only 46 years old.

Her 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 1960s and 70s. In the late '70s and '80s he went on to become one of the most prolific screenwriters for several TV series including the wildly popular, The Cosby Show. Just as her father thrived in TV, Holly wound up making her mark on the small screen as well.

In the 1980s 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 1 million people are diagnosed with Parkinson's disease and each year there are 60,000 new cases in the U.S. This neurodegenerative brain disorder is characterized by a progressive destruction of cells in the central nervous system. The brain's inability to produce an adequate amount of dopamine causes nerve cells to fire incorrectly which then causes afflicted individuals 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). The most high profile people living with PD today are the actor Michael J. Fox and former world heavyweight boxing champion Muhammad Ali.

"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." Holly struggled with whether or not she should quit college to take care of her father. "It was a very helpless time."

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 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, Holly became one of the 7-8 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 almost 10 years later. She had her twins, a husband who was on the road for six months out of the year and she was pregnant again. Moving her family to New York or moving her father in with her in LA really was not an option.

What was hard for Holly in those years was not being able to share the father-daughter moments with her dad. "I remember when 9/11 happened, and I wanted to talk to my dad about it, it was just so devastating but he wasn't really here anymore." In the end he was suffering from mild dementia, and any communication was difficult if not impossible. Holly couldn't bring him back into the world, and this emotional loss before the physical loss of her dad was really hard on her – she encountered a lot of dark moments. She says what is hardest for those caring for loved ones with brain-related illnesses is, "You break your butt to be there for them and help them and at the end of the day they don't even know who you are. You really have to dig deep to keep going."

Despite his decline, Holly still wishes she could have changed things. "To this day since my father passed away I still feel a tremendous amount of guilt," says Holly, her voice growing quieter. "That I wasn't there, that it didn't happen on my watch, the guilt, to be honest, never really goes away."

As Holly struggled with her dad's disease, she was noticing something did not seem right with her two-year-old son R.J. After watching some of his unexplainable behaviors continue, Holly took R.J. to be tested when he was three years old. The result was a devastating diagnosis: autism.

"I know it sounds like every cliché imaginable but when we were told about R.J., I felt like I was kicked in the gut, the carpet was pulled out from under me and my life just stopped right there in the 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. I felt 10 times more than helpless."

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 be told that your three-year-old child will never really be anything."

What Holly and Rodney found as they struggled with their son's diagnosis and started to speak to other parents around the country is the best message is: Hope. "Every parent who gets a devastating diagnosis and is not given much hope by medical professionals should leave that office saying, 'I'm not going to let anyone tell me what my kid will or will not be.'" What you do have to do according to Holly is roll up your sleeves and become your child's best advocate. "You'll have a period of denial after you get the news. It's OK, you're human. Just move through denial quickly so that it does not steal time from you and your child when you can be discovering new interventions." Holly learned when it comes to autism, you have to move fast. Getting therapies underway, trying new diets, etc., are all critical in terms of time to intervene and improve your child's situation.

What Holly also learned from her journey is the healing power of time can be so essential to caregivers. "R.J. was diagnosed 11 years ago and in all fairness, a lot was not known about autism back then." Now with new books, talk shows, clinical studies, Internet information, as well as new drugs and alternative medicine techniques, knowledge is at our fingertips, and hope grows every day around new therapies and maybe even cures.

Mars vs. Venus

While Holly was recovering and regrouping over R.J.'s diagnosis, what happened next came out of left field. 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 living in denial a lot longer than Holly did.

Since Rodney was on the road still playing in the NFL, Holly would send him books to read and magazine articles on autism, most of which she says he ignored. Because Rodney was in denial about R.J.'s condition, as is typical of fathers of special needs children, he distanced himself and was less involved in the daily struggle.

While it is estimated 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 R.J.," says Holly. "Rodney originally thought R.J. just needed more discipline; I knew it wasn't about that at all."

In a study that looked at men and women caregivers of spouses and parents, Bowling Green State University researcher I-Fen Lin says, "Men take a block and tackle approach to caregiving. They're problem solvers and they'll look to finish a task and move on whereas women caregivers are more nurturing but also have higher expectations of themselves – they're more concerned with how their performance as a caregiver is judged, especially by the person they're caring for."

"This was the classic men are from Mars, women are from Venus scenario," says Holly. "Men and women just think and do things differently." Holly says Rodney struggled with being a world-class athlete and having a son who he could not toss the football around with. Holly says for a lot of men, "it impacts their manhood."

Holly encouraged Rodney to do two things. First, she thought Rodney would benefit from talking to other dads of sons with autism. While most men struggle with group therapy and see it as touchy feely, being able to hear other dads felt the same as Rodney really helped him. In addition, Holly encouraged her husband to write down his thoughts about being a father of a special needs child, which eventually became his book, Not My Boy! A Father, A Son and One Family's Journey with Autism chronicling his discovery about autism through his son R.J.'s eyes.

As she looks back on this period, Holly says if she could play Monday morning quarterback, "I would have been way more respectful of Rodney's denial, and I would not have looked at it like it was an affront to me and my child." Holly says spouses, especially women, need to be patient, since parents process things differently as men and women. They're each struggling with the emotional tools needed to deal with this challenge.

Although Holly admits she and her husband struggled with their marriage through this period, she credits Rodney with 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.

"As I look back, I talk about Rodney's denial over R.J.'s autism, but I realize now that his denial over our son was the same denial I had with my dad – different people, different times – but still denial." (Continues...)

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Excerpted from A Cast of Caregivers by Sherri Snelling Copyright © 2013 by Sherri Snelling. Excerpted by permission of Balboa Press. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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