Holly Robinson Peete Shines as Caregiver Advocate

aarp-caregiving-fair-2016

On November 17, our CEO Sherri Snelling is privileged to be hosting the opening webinar for AARP’s Online Caregiver Fair with Holly Robinson Peete.  Holly and Sherri have both been caregivers for their fathers and Holly is also a caregiver for her son with autism.  

Save the date to join Holly and Sherri on Thursday, November 17 at 11am EST where you can join us and ask us your caregiving questions. Registration is free – go to: aarp.org/familycarefair

Following are excerpts from Sherri’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, including her interview with Holly Robinson Peete. As a TV star, singer, author and co-founder with her husband, NFL star Rodney Peete, of the HollyRod Foundation which helps families of those with Parkinson’s disease and autism, Holly is a true caregiving champ.  

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nervous system, and raising twins, one who was healthy and active (her daughter Ryan), and the other (son RJ), who was withdrawn and showing the symptoms of a special needs child.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.

ALotOfHotWaterGordon Sesame StreetHer 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 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 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 that one 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).  The most high profile people living with PD today are the actor Michael J. Fox and former world heavyweight boxing champion Muhammad Ali.

holly-and-matthew-robinson-photo“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 eight 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 10 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.”

holly-and-rj-2016It 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.

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.  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.

MyBrotherCharlie book cover

 

 

 

same-but-different-book-and-holly-and-kidsIn 2016, Holly collaborated with her twins, RJ and Ryan Elizabeth on the book, Same But Different – Teen Life on th Autism Express.

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.

 

The Peete family with Holly's mom, Dolores Robinson

The Peete family with Holly’s mom, Delores Robinson

Cast of Caregivers Cover FINAL jpegHolly’s story along with other celebrity caregiver journeys are included in Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

 

 

 

 

©2016 Sherri Snelling

AARP Online Family Caregiving Fair – Nov 17

aarp-caregiving-fair-2016

AARP hosted its second annual Family Caregiving Fair online in November, 2016. The online event featured our CEO, Sherri Snelling and caregiving superstar, Holly Robinson Peete. If you missed the live event, you can still watch the Webinar interview by clicking on this link:

“A Caregiving Conversation with Holly Robinson Peete”

Sherri and Holly had a 1-on-1 conversation about Holly’s caregiving role for her father (who had Parkinson’s disease) and her son, RJ, who has autism. Holly shared her challenges, the laughter, the tears, the guilt, the gratitude that all comes with caregiving while Sherri offers expert advice and resources during their “Caregiving Conversation.”

hrp-with-dad-son

 

 

 

Holly Robinson Peete – Shining Her Starring Spotlight on Autism/Parkinsons

As we commemorate National Parkinson’s Disease Awareness and National Autism Awareness this month, Sherri Snelling excerpts from her book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, her interview with Holly Robinson Peete. As a TV star, singer, author and co-founder with her husband, NFL star Rodney Peete, of the HollyRod Foundation which helps families of those with Parkinson’s disease and autism, Holly is a true caregiving champ.  Autism and Parkinson’s disease are two health issues Holly knows well – her father suffered from Parkinson’s and her oldest son, RJ, is living with autism.

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.

ALotOfHotWaterGordon Sesame StreetHer 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 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 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 that one 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).  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.”

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 eight 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 10 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.

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.  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. MyBrotherCharlie book cover

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.

Team Peete. Photo by Christopher Voelker.

Team Peete. Photo by Christopher Voelker.

 

Cast of Caregivers Cover FINAL jpegHolly’s story along with other celebrity caregiver journeys are included in Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

 

©2016 Sherri Snelling

 

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.

CastofCaregivers Cover FINAL

©2015 Sherri Snelling

February Means The Grammy Awards and Music Therapy

FEB Grammy Music Therapy

 

February means it’s Grammy season and the sound of music is all around. This month we celebrate the caregivers, like our friend Holly Robinson Peete, who are musical stars and caregivers as well as luminaries in the music business such as interviews with Quincy Jones, Smokey Robinson, Alan and David Osmond, of loved ones. On a somber note we share the caregiving story of Casey Kasem, who was known best for his radio show, “America’s Top 40” but in his later years became a case study in how families need to have the C-A-R-E Conversation to avoid conflict and event elder abuse. We’ll also share articles about the power of music to heal – through music therapy or just providing the “food for the soul” all caregivers need.

Here are our articles that show music is a must for every caregiver:

Music Therapy – a 5-Note Plan for Caregiver Calm (originally published on the Alzheimer’s Association blog)

Alzheimer’s App Uses Singing to Boost Mood (originally published on PBS Next Avaenue)

Holly Robinson Peete’s Most Challenging Role – Sandwich Generation Caregiver (Holly’s in-depth story found in Sherri’s book, A Cast of Caregivers)

Catherine Zeta Jones – a caregiver’s self-care mental health plan (who won her Oscar – also happening this month – for her singing/dancing role in Chicago)

Glen Campbell’s Farewell Tour (originally published on PBS Next Avenue)

The Osmond Family’s Greatest Act – Winning the Daily Battle Against MS (Sherri interviewed both Alan and Davis Osmond for her book, A Cast of Caregivers)

Casey Kasem’s Legacy for Caregivers (originally published on PBS Next Avenue)

Music of the Night – 2013 Alzheimer’s Association “A Night at Sardi’s” Event

Stars Take Center Stage to Fight Alzheimer’s disease – 2012 Alzheimer’s Association “A Night at Sardi’s” Event

 

And, many of the articles on our Caregiving Club site and the wealth of information we provide can be found in our CEO, Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories To Help You Prepare to Care.

CastofCaregivers Cover FINAL

 

November is National Diabetes Awareness Month

NOV Diabetes Month

Diabetes is a growing concern for the health of Americans. Today, 30 million people live with diabetes and among those, 1 in 3 seniors over age 65 has diabetes. Yet 8 million Americans remain undiagnosed. Diabetes has many risks for other health problems including the 4.2 million people over age 40 who have diabetic retinopathy impairing eyesight and possibly causing blindness if not treated. Diabetes is the leading cause of kidney failure and for those over age 40 more than 70,000 non-traumatic amputations of toes, fingers, and other limbs occurs related to complications of diabetes. Type 2 diabetes is the version of this disease that we can try to control with reduced weight, better exercise and nutrition earlier in life.

Watch Sherri Snelling’s celebrity interviews, including George Clooney, Quincy Jones, Holly Robinson Peete, Gene Simmons and Harry Hamlin from the red carpet of the Carousel of Hope Ball – one of the leading organizations supporting children with diabetes:

Carousel of Hope Ball – Celebrity Interviews from the Red Carpet

 

Holly Robinson Peete – Superstar Sandwich Generation Caregiver

As we commemorate National Parkinson’s Disease Awareness and National Autism Awareness this month, our CEO Sherri Snelling interviewed Holly Robinson Peete, TV star, singer, author and co-founder with her husband, NFL star Rodney Peete, of the HollyRod Foundation which helps families of those with Parkinson’s disease and autism.  These are two health issues Holly knows well – her father suffered from Parkinson’s and her oldest son, RJ, is living with autism.  This Super Sandwich Generation caregiving star, talked to Sherri about getting rid of guilt, keeping her marriage in play and leading Team Peete to help others.

Holly R Peete Parkinsons and Autism

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 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.

ALotOfHotWaterGordon Sesame StreetHer 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 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 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 that one 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).  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.”

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 eight 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 10 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.

Team Peete Scores

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.  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.

 GROUP4660RT Peete family portrait

Photo:  Christopher Voelker

Read Sherri’s book which includes more of the interview with Holly Robinson Peete, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care. My person note on Holly – since I interviewed her in 2012 we have stayed in touch and Holly continues to be a passionate advocate for caregivers. I was proud to share the stage with her last fall where we both spoke about caregiving to a crowd of 500 in Chicago.

CastofCaregivers Cover FINAL

 photo (2)

 

 

 

 

 

 

 

 

 

©2015 Sherri Snelling

Hitting the Caregiving High Notes – Music as Therapy

2014-56th-grammy-awards-logoAs I watched the Grammy Awards tonight, it brings to mind the power of music to heal us.  Numerous studies have shown the therapeutic effects of music for those with everything from Alzheimer’s disease to autism.

When it comes to Grammy winners, none are bigger than Glen Campbell and Quincy Jones – both of whom are touched by caregiving and music therapy.

I interviewed Kim Campbell, who is now caregiver to her husband, country music icon Glen Campbell diagnosed in 2012 with Alzheimer’s, she said music has helped her 77-year-old husband to cope with his diagnosis when he toured during his Farewell Tour a couple of years ago. During one concert stop, Campbell forgot the chorus to one of his smash hit songs but the audience sang the lyrics for him and he was able to regain his memory of the song without missing a beat on his trusted guitar.Glen and Kim Campbell dreamstime_m_23475186 (2)

I also spoke to music legend and multiple Grammy winner Quincy Jones about his latest passion projects which include the amazing effects of music as therapy for children with Down Syndrome and older Americans with dementia.

Quincy Jones crop

Is music one of the keys to a longer, happier life – despite your health issues?

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, a 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.”

Brain Fitness Through Music

Groovin Puppy dreamstime_3978556 (2)

Since music is associated with one of the five senses – hearing – which is controlled by the brain, it makes sense 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. 

Studies have shown that music reduces agitation or improves behavioral issues such as violent outbursts in dementia patients.  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.

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 provide 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 three 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.

Holly with RJ

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

Music – A Cure for Caregiver Chaos

Music as therapy is not just for your loved one.  We know caregivers encounter increased stress over caring for a loved one – in fact caregivers who reported their health was impacted by caring for a loved one cite stress as their No. 1 challenge. Studies show 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.

How to Use Music in Your Caregiving Plan

The 2008 documentary Young @ Heart showcased a chorus of 80-year-olds singing Beatles, Rolling Stones and Sonic Youth cover songs, but 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.  Here is my 5-Note Caregiver Music Therapy Program:

  1. Discover the “happy times tunes”:  Talk to your loved one about happy times in their life and understand the music associations with that time are essential to their sense of happiness.  Whether it is big band, gospel, rock ‘n’ roll, country, opera or blues, find out what tunes make your parent or spouse smile.  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 traumatic 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 who wrote about her caregiving journey in Passages in Caregiving, 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 the blues 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 a 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.

This blog is adapted from A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care available at online and retail booksellers worldwide.

CastofCaregivers Cover FINAL

 

Celebrity Spotlight

Caregiving Club CEO, Sherri Snelling, interviews celebrities from movies, TV, Broadway, sports, news, music and politics who are or have been a family caregiver.

In November we honor all the nation’s caregivers – those caring for older parents or family members, those caring for spouses, those caring for siblings or special needs children and those caring for friends — with special interviews all month long.

Read all the celebrity interviews by clicking here.

Booklovers – The Home of Caregiving Club Reading Lists

CC Reading List Books smallCaregiving Club realizes that caregivers have precious little time to read but we felt compelled to create our reading lists for you anyway.  You may only read a chapter at a time or pick up the book once your caregiving is done.  Or we hope those who have not yet stepped into the caregiving spotlight may read one of these books to help you prepare to care.

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

We’ll be publishing these lists twice a year – March and November.  We chose those dates because March 2 is Read Across America Day – commemorating Dr. Seuss who was a caregiver for his wife.  November is National Family Caregiver Month and since it’s right before the holidays we felt it was a good time to update our lists.

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

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

Happy Reading!

Web family caregiving

Family Caregiving List vMar 2013

 

 

 

 

 

 

 

Web spousal caregivingSpousal Caregiving List vMar 2013

 

 

 

 

 

 

 

Web alzheimers caregivingAlzheimer’s Caregiving Journeys List vMar 2013

 

 

 

 

 

 

 

Web end of lifeEnd of Life List vMar 2013

 

 

 

 

 

 

 

Web caregiver health wellnessCaregiver Health and Wellness List vMar 2013

 

 

 

 

 

 

 

Web inspirationSpiritual and Inspirational Caregiving List vMar 2013

 

 

 

 

 

 

 

Web celeb caregiving journeysCelebrity Caregiving Journeys List vMar 2013

 

 

 

 

 

 

 

Web humorHumor in Caregiving List vMar 2013

 

 

 

 

 

 

 

Web caregiver kidsCaregiving Books for Children List vMar 2013

 

 

 

 

 

Stars Talk Healing Power of Music

Singers Glen Campbell and Holly Robinson Peete and Grammy legend Quincy Jones talk about their personal experiences with the therapeutic power of music.   Click here to read more.

The Stars Come Out for Hope and Help to Conquer Diabetes

Barbara Davis is a small, slight woman who looked like a fairy princess at her recent gala event – but don’t be fooled – this woman is a giant force gathering L.A.’s finest to raise dollars and awareness for diabetes.  For more than 35 years, her Carousel of Hope Balls to benefit the Barbara Davis Center for Childhood Diabetes at the University of Colorado School of Medicine, have raised more than $75 million and are always the VIP ticket for L.A.’s entertainment and society crowd.

According to the American Diabetes Association more than 25 million people – both children and adults – are living with either type 1 or type 2 diabetes and an additional 79 million Americans are pre-diabetic.  Barbara Davis and her late husband, Marvin Davis, the billionaire Colorado oil baron and former owner of Twentieth Century Fox, created their foundation based on their experiences with their daughter Dana who was a child when she was diagnosed with diabetes.  Another daughter, Nancy, has multiple sclerosis and started her own foundation which holds the Race to Erase MS event every year.

Held bi-annually at the Beverly Hilton Hotel, the Carousel of Hope Ball never fails to deliver Hollywood’s elite coming together for food, music and fund-raising. Caregiving Club TV was invited onto the red carpet to interview the galaxy of stars who came out to support Barbara but also to honor the night’s award recipient, George Clooney. We asked the celebrities about caregiving and we also asked some of the night’s music legends – including Neil Diamond, Smokey Robinson and Quincy Jones – about the power of music to help us heal. Here are some of the highlights of the evening:

 George Clooney – The man of the hour is just as he appears in many of his movie roles: charming, gracious, gorgeous and full of mischief.  As flashbulbs went crazy we were able to get a couple of minutes of George’s time to ask him about his award.  When talking about chronic disease such as diabetes and third world challenges, George turns serious and passionate about making sure as a society we don’t drop the ball on helping others.  He said to me, “Diabetes is at almost epidemic proportions, I’m hoping that whatever you can do to bring attention to it is a good thing.”  We hear you George.

 

Holly Robinson Peete – Actress, author and advocate Holly was beautiful in a jade-colored gown.  She is a Sandwich Generation caregiver – squeezed between caring for two generations – having cared for a father with Parkinson’s disease and a son living with autism.  Holly (whom I also interviewed for my upcoming caregiving book), talked to us about advances in autism and how important it is for caregivers to get a break for themselves so they do not burn-out.  “You have to find time to focus on yourself and take some time off from caregiving occasionally – you’re not good to anybody if you’re not taking care of yourself.”

Neil Diamond – Before he became a best-selling singer/songwriter (115 million records worldwide), Grammy winner and according to Billboard the third-most successful adult contemporary artist (behind only Barbra Streisand and Elton John), Neil Diamond actually contemplated a career as a laboratory biologist to find a cure for the cancer that had taken his grandmother.  He told me “I think it’s everything,” to have family and friends around you as you battle a chronic illness or disability.  Tonight he performed onstage and even coaxed George Clooney into a duet on his famous “Sweet Caroline.”

Neil Diamond and George Clooney sing “Sweet Caroline”

Smokey Robinson – Motown and Grammy legend, Smokey talked to us about the power of music to help heal our bodies and our souls.  He told me, “Music is the universal language, it transcends all people, languages and continents and it’s a gift from God which is why it soothes the soul and mind and the body and I am so happy I am in it.”

Sherry Lansing – The first woman to run a major Hollywood studio, Sherry was president of Twentieth Century Fox and CEO of Paramount Pictures and now runs her own foundation to support cancer research and programs.  She talked to me about caregivers needing a break and how great it is to be a woman in her third age, “I think the third chapter is the best part of life – it’s about your time, you get to do what you want to do and for me it’s about giving back and it’s the best time of life.”  She also said about caregiving, “My message is to not neglect yourself.  If you do, you’ll never be able to take care of the other person – you must put yourself first, get enough sleep and take care of yourself.”

Quincy Jones – For more than five decades Quincy Jones has been an impresario in the music world – as performer, songwriter, producer (Michael Jackson’s Thriller and Off the Wall albums) and 27-time Grammy Award winner.  He told me about his current work providing music therapy programs to children with Down syndrome and autism and adults with Alzheimer’s disease, “[It’s] Unbelievable, we are knee deep in music therapy now for autism, dyslexia, ADD and six other diseases. Music engages both sides of the brain and helps calm and soothe many patients.”

Harry Hamlin – Harry and his wife, actress and talk show host, Lisa Rinna, recently starred in a Depends commercial helping to destigmatize one of the issues [incontinence] that happens as we age or have a disease which affects our neurological functions.  Both Harry and Lisa have been through caregiving with their parents and I talked to Harry about this, “We depend on our families when disease strikes, it’s always a tough moment in life, it’s a moment that is inevitable and if we can be there for our parents, it just makes it that much better.”

Loretta Devine –  Loretta has had a recurring guest starring role on TV’s Grey’s Anatomy as wife of Chief Webber (James Pickens, Jr.), Adele, who suffers from Alzheimer’s.  I recently gave her and James an award in our Caregiving Club 4th Annual CARE-Y Awards for best caregiving stories on television.  Loretta told us she is one of the 79 million pre-diabetics and she finds family and friends are essential in keeping her on track when you are battling a chronic illness.

Gene Simmons – Lead singer for the iconic rock band, KISS, Gene had a father he lost to complications of diabetes and his mother currently suffers from the disease. He told us, “It’s in my genes and I have to watch how much sugar I intake…sugar is not your friend.”

 

Donna Mills – This long-time TV actress  from the 80s Knots Landing to today’s Nip/Tuck has been a long-time friend of Barbara Davis and told me, “If Barbara has anything to say about this [diabetes], they will find a cure and they’re going to find it soon.”

Nancy Davis – She is living with multiple sclerosis but also supports her mother in her advocacy efforts and her sister Dana who suffers from diabetes. Nancy stopped to talk to me about the importance of family caregivers, “When you or a loved one are diagnosed with a life-threatening or life-altering disease, it is devastating and you feel all alone.  There is nothing like having family and friends around you to make you feel normal and help you get the help and information you need – these advocates can help you think clearly when you are still in shock over your diagnosis.”

Barbara Davis – As a mother with two daughters battling devastating disease, Barbara knows the important role family caregivers play.  Turning her passion into advocacy for diabetes and multiple sclerosis is her legacy as she tells me, “I want everybody to be wonderful, I want everybody to be healthy – no more kidney disease, no more stroke, no more heart disease – that’s why I do this.”

In addition to the above stars, the night’s event also included:  Jane Fonda, Shirley MacLaine, Sumner Redstone, Clive Davis, Berry Gordy, Sidney Poitier, Jay Leno, Julianne Hough (Dancing with the Stars, Rock of Ages), Candy Spelling, Nicky Hilton, Sasha Alexander (Rizzoli & Isles), Nicollete Sheridan, Jennie Garth, Jackie and Joan Collins and others.

Click here to view the Caregiving Club Carousel of Hope Ball celebrity interviews, or visit our Caregiving Club You Tube channel to view all our celebrity event videos.

Holly Robinson Peete – Superstar Sandwich Generation Caregiver

As we commemorate National Sandwich Generation Month this July , we put the spotlight on Holly Robinson Peete – TV star, singer, author and co-founder with her husband, NFL star Rodney Peete, of the HollyRod Foundation which helps families of those with Parkinson’s disease and autism.  These are two health issues Holly knows well – her father suffered from Parkinson’s and her oldest son, RJ, is living with autism.  This Super Sandwich Generation caregiving star, talked to Sherri about getting rid of guilt, keeping her marriage in play and leading Team Peete to help others.

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 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.

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 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 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 that one 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).  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.”

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 eight 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 10 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.”

It 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

Team Peete Scores

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.  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.