Holly Robinson Peete is a superstar as an actress, TV talk show host, singer, author and advocate, but she shines brightest as a caregiver.  She stepped into the caregiving spotlight as a college student caring for a father with Parkinson’s disease.  A few years later she became a mom only to find that one of her three-year-old twins, her son R.J., had autism.  Among the nation’s 65 million caregivers, 24 million are Sandwich Generation, caring for parents and children simultaneously, and 17 million Americans care for a child with special needs.

Mediaplanet: Caregivers often say they feel “all alone” while caregiving even though they may have a spouse, siblings, friends or adult children there seems to be a sense of isolation – did you feel alone while caregiving?

Holly Robinson Peete: When my dad was diagnosed with Parkinson’s disease it was the ‘80s and there was no Internet to find out more information so I went to the library and the two words that kept leaping out at me were: neurological  and incurable.  I remember feeling helpless and being in a dark, lonely place.  A few years later when I married my husband, Rodney (former NFL quarterback), became “my rock” in helping me care for my dad.  In fact, it was Rodney’s idea to start our HollyRod Foundation to help families of those with Parkinson’s disease (now expanded to include families of those with autism).

"Rodney and I have our foundation – knowing we are helping other families to cope and to get help – makes all the difference in the world.  I’m taking my caregiving experience and paying it forward."

When my son, R.J., was diagnosed with autism, it was a different type of isolation.  The diagnosis did not make me feel alone in caring for a special needs child, but many of my friends did not know how to cope and surprisingly fell away from spending time with me.  There were few exceptions but the two supporters I could always count on were my mom and my best friend, Terri Ellis.  I knew they were always there for me and for R.J.  When it came to my husband Rodney, it was different with R.J. Rodney had been such a source of strength for me caring for my father but when it came to our son, we struggled at first.  Ultimately, Rodney found a way to get on board with R.J.’s diagnosis and that became his book, Not My Boy! A Father, a Son and One Family’s Journey with Autism.  I realize now that when it comes to your child – especially a special needs child – it becomes a Mars vs. Venus approach to coping and both parents have to recognize those differences and support each other through

MP: Caregiving can create a lot of fear – fear of the unknown, fear of loss, etc.  What fears did you have while caring for your loved one?

HRP: With my dad, my fears were more regrets.  I regret not being by his side when he passed – I still struggle with the guilt that it didn’t happen on my watch.  I also regret losing many precious years with him and that has become more poignant now that I am a parent.  My dad was diagnosed about age 45 and even though he lived another 20 years, many of those years he was not able to full participate as a father and grandfather because of his Parkinson’s and other health issues and I regret that.

My fear rears its ugly head when it comes to my son, R.J.  I think every parent of a special needs child wakes up in a cold sweat at night worrying, “Who will take care of my child when I’m gone?”  We know that special needs children, whether it’s Down syndrome, autism or many other disorders and diseases, are living longer.  While that is encouraging it is frightening for parents knowing they will probably be gone before their child is and then who will care for their child?  In less than 10 years there will be 500,000 adults with autism.  Our family, even though our kids are still young, have already had “the talk.”  My kids know if Rodney and I are gone, they will step up to care for R.J.  Some parents think this is an enormous burden on your other children, but in our family it is what they would do anyway so Rodney and I are helping them learn how to be future caregivers.

MP: Caregivers are often in denial that a parent or other loved one is declining – did you find yourself in denial during your caregiving journey?

HRP: It’s funny because looking back, I was in a lot of denial about my dad.  I did not want to admit this man who was so talented (he played Gordon on Sesame Street and later was a writer/producer for TV’s Eight Is Enough and The Cosby Show) and so alive could be brought down by something as devastating as Parkinson’s disease.  I did not want to face that my dad – this pillar of strength – was vulnerable and in such rapid decline.  There was a lot of sadness for my brother and me because our dad just wasn’t the same dad we remembered.

With R.J., I really was not in denial – I became a tiger mom in the sense that I was a fierce warrior to find the latest therapies, treatments and proven programs that could help my son.  My husband Rodney was really the one in denial about our son.  It took me a long time to get over my anger at Rodney but I finally realized the same denial I had with my dad, Rodney was feeling over our son.  I think that realization brought us closer together.

MP: What do you wish you had known that blindsided your or caused you frustration, etc. while caring for your loved one?

HRP: With my dad, I did not really understand how his disease would affect him and affect our relationship.  In his later years he also developed dementia in addition to his Parkinson’s and this made it really difficult to have a real relationship.  I remember when 9/11 happened and I wanted to reach out to my dad and talk to him about what was happening, he just wasn’t able to have those father/daughter conversations anymore and that left me feeling sad that he was really already gone in many ways.

What frustrates me in my role caring for R.J. is how much we don’t understand about autism and how many health care professionals give you no hope.  As a caregiver of a special needs child – or any caregiver of a loved one – you have to dig deep and get past that negativity.  When my son was diagnosed, all the doctor kept telling me and Rodney is what R.J. would never do.  It became the never day for me.  But it was the only day I allowed never to be applied to my child.  I knew I could find people to help me discover ways to make R.J.’s world as wonderful and hopeful as my other children.  My advice to all caregivers is never accept negativity from anyone.

MP: If there is one piece of advice you would pass along to future caregivers what would it be?

HRP: First of all, don’t neglect yourself.  It is so easy to put yourself last when you are caring for everyone else.  But you can’t keep running if your tank is on empty. A lot of people depend on you and if you can’t keep going, then what happens to them?

Also, became an advocate.  People are uneducated when it comes to various diseases and disorders and it is part of your job as a caregiver to help open their eyes.  Once you do, you will find many people want to help.  I found this with my friends who backed away for a few years after R.J.’s diagnosis – once I explained to them what autism is, why R.J. does the things that he does, many friends become much more compassionate. 

And let go of the guilt. I found that I took my guilt, especially about my dad, and turned it into gratitude.  My family celebrates my dad’s birthday every year (New Year’s Day) watching his old programs and sharing stories with my youngest children who really didn’t know him.  And Rodney and I have our foundation – knowing we are helping other families to cope and to get help – makes all the difference in the world.  I’m taking my caregiving experience and paying it forward.