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Holly Robinson Peete's Most Challenging Role: Sandwich Generation Caregiver

While caring for her father with Parkinson's disease, the actress also had to face her son's autism diagnosis

By Sherri Snelling | April 1, 2013
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Sherri Snelling, executive director at Keck Medicine of USC and author of A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self-care” while caring for a loved one.

When I first met Holly Robinson Peete, she radiated positive energy, kindness and the "I got this covered" attitude that helps her handle any craziness life throws at her.

But the 48-year-old actress, singer and author admits there are days when she has felt the sun disappear into the shadows of uncertainty and fear. Along with her intense career demands, Peete has been a sandwich generation family caregiver — one of 24 million, according to the National Alliance for Caregiving. She helped care for her father as he lived with Parkinson's disease while she was also raising four children, one of whom has autism. As we mark both National Parkinson's Awareness Month and National Autism Awareness Month in April, it's a fitting time to consider Peete's public and private efforts.
 
(MORE: A Caregiver's Guide to Parkinson's)

Peete's father, Matthew Robinson, who died in 2002, was the first actor to play Gordon on Sesame Street before becoming a successful writer and producer for television series like Eight Is Enough and The Cosby Show. He was diagnosed with Parkinson's disease at age 45, while his daughter was a student at Sarah Lawrence College. She describes the day he called to share the news as "a very dark day in my life." She ran to the campus library to learn more about Parkinson's. As she read, two words kept jumping off the page: neurological and incurable.
 
The Most Difficult Decisions

Today, about 1 million Americans live with Parkinson's and 60,000 new cases are diagnosed in the United States each year. The neurodegenerative disorder affects nerve cells in the brain controlling muscle movement. Parkinson's kills or inhibits the functioning of neurons that produce the chemical dopamine, which sends signals coordinating how the body moves. Symptoms such as trembling limbs and stiff, slow movements and speech gradually worsen as the disease progresses, although medication can limit the effects.
 
Peete's parents were divorced, so managing her father's care fell to her and her brother. At one point she wondered whether she should quit college to help care for him full-time. "It was a very helpless time," she told me.
 
After college, Peete became a star on Fox's hit series 21 Jump Street, and in 1995, she married Rodney Peete, who at the time was a quarterback with the Philadelphia Eagles, Matthew Robinson's favorite team. Peete says her husband quickly became "my rock" as she helped to care for her dad. And yet as Robinson's condition progressed, Peete and her brother realized he needed the around-the-clock care of a dedicated facility. As she pursued her career in Hollywood and her husband traveled during the NFL season, her dad remained anchored in New York City. Peete became one of the nation's more than 7 million long-distance caregivers.

(MORE: The Emmy Awards We'd Give: TV's Best Caregivers)

"The day we moved my dad into the facility was the worst day of my life," she says. "To this day I have regrets about the decision, but there were not a lot of choices. The guilt, to be honest, never really goes away."

What she missed most of all, she says, were father-daughter talks as the effects of the disease on his speech and the onset of mild dementia made conversation a struggle.

A few years later, Peete noticed that Rodney Jr., one of her twins born in 1997, was not responding to or interacting with others the way his sister did. When R.J. was 3 years old, she and her husband sat in a doctor's office on what she now calls "the never day — the day the doctor explained to Rodney and me all the things our beautiful baby boy would never do."
 
A Family Buckles, but Does Not Break

At first, Peete says she felt as if she'd been dropped through a hole in the floor. But as they left the doctor's office, she righted herself and said to her husband, "No one is ever going to tell me what my kid will not be." She threw herself into reading about autism and tried new approaches, including a gluten-free diet, pet therapy and music therapy, which she found calmed her son and soothed his repetitive movements.

(MORE: Meet the Hall of Fame Caregiver Who Changed the NFL)

As she pursued treatments, though, Peete found her husband retreating from R.J.'s reality. When he was on the road, she would send him articles to read, but he ignored most of them. When he was home, he tried to engage with R.J., but his son was unable to respond in kind. Confused and frustrated, Peete's husband was not the same rock he had been when she was caring for her dad. Eventually, she persuaded him to join a support group for fathers of children with autism and to start writing his experiences in a notebook. (Those notes would become the basis of Rodney Peete's book, Not My Boy!: A Father, a Son and One Family’s Journey With Autism.)

Holly Robinson Peete came to realize that she and Rodney approached their son's condition in a typical Mars vs. Venus way. "Men and women just think differently," she says.

(MORE: 17 Essential Books for Family Caregivers)

In a study of how male and female family caregivers react to stress, Bowling Green State University researchers found that women tended to be both more nurturing and neurotic, critically analyzing their caregiving performance to the point of creating stress for themselves. Men, on the other hand, attacked caregiving like a sport, using what could be called a "block and tackle" approach, checking tasks off their to-do lists without stopping to worry about how their parents or others might judge their performance.

The men, therefore, experienced lower stress levels than the women. (It doesn't hurt that related research has found that men tend to be more highly praised by others for their caregiving work than women are.)

Initially, Rodney Peete wasn't able to check anything off a list with R.J., which left him feeling hopeless. But eventually his support group helped him find ways to interact with his son more meaningfully.
 
Studies have found that as many as 85 percent of parents of special-needs children get divorced, but the Peetes have beaten the odds. She believes that her husband being away on the road when R.J. was little may have saved their marriage by letting them each cope with his diagnosis in their own way.

Despite their celebrity connections, the Peetes have faced the same issues as other families with special-needs kids. They found that many old friends fell away after R.J.'s diagnosis because, she says, "They just really couldn't handle it." They've relied on the support and strength of Holly Robinson Peete's mother. And they've openly addressed one of the most challenging questions for any such family: Who will care for their son when they can't?

Their team approach to care extends to R.J.'s siblings, who know their responsibilities, now and in the future. "Some people say you put too much pressure on your other kids to ask that of them, but it is understood: 'When we're gone, you're all taking care of this guy.'"

Today, the family works to promote awareness of autism, Parkinson's and family caregiving and raises money to support research through their HollyRod Foundation, launched in 1997. Holly Robinson Peete also sits on the board of the national advocacy group Autism Speaks. "Knowing my family can help others and maybe ease their caregiving journey is the best gift of all," she says. "At some point, you take your guilt and you move on — and I did that by paying it forward."
 
Learn more about the Peetes' family caregiving story in my new book, A Cast of Caregivers: Celebrity Stories to Help You Prepare to Care (Balboa Press 2013).

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