Difference in Caring for Moms versus Dads

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

Read our CEO Sherri Snelling’s article for PBS Next Avenue about “The Difference in Caring for Moms versus Dads.”

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 hosts its second annual Family Caregiving Fair online. This year the online event features our CEO, Sherri Snelling and caregiving superstar, Holly Robinson Peete.

When: Thursday, November 17 from 11am – 4pm EST

“A Caregiving Conversation with Holly Robinson Peete and Sherri Snelling” – 11am – Noon EST

Where:  www.aarp.org/familycarefair (register for FREE)

Sherri and Holly will be having 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 shares 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” at 11am EST.

hrp-with-dad-son

Everyone is invited to join AARP, Holly and Sherri for this virtual caregiving conversation LIVE – where you can ask questions of Holly and Sherri by registering for this FREE event at:

www.aarp.org/familycarefair

Throughout the day you can also watch other expert caregiving webinars, chat with other caregivers across the country, find tips on dealing with stress, get help with costs of caregiving and financial planning as well as expert insights on Medicare and visit participating organizations – U.S. Administration on Aging, Alzheimer’s Association, American Cancer Society, SAGE, U.S. Veteran’s Administration and others – in their “virtual information booths.”

And you can do it all from the comfort of home or office via your computer. Don’t miss this special event for National Family Caregiver Month!

 

November National Caregiver Month

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Many caregivers say they feel “all alone” and yet, 65 million family members and friends are providing unpaid care to loved ones in America today. If you are a caregiver, you are not alone.

It may be an older parent, an ill spouse or sibling, a special needs child who is becoming an adult or a friend caring for a chronically ill friend. There are many ways we become caregivers but for most of us, we aren’t well prepared for the journey. And, with lack of planning comes chaos, confusion, unforeseen costs and a common caregiving side effect we call “burn-out.”

Caregiving Club was formed to help guide you to a place of balance while caregiving – mentally and emotionally, physically and financially. Having good information on available resources is one part of our mission. We also help consult with companies that are recognizing the special role of caregivers and developing the services and products that help caregivers.

Our CEO Sherri Snelling writes on a variety of caregiving topics for PBS Next Avenue, Forbes.com, Huffington Post, USA Today and other outlets. You can check out most of her articles in our archives or click here for a complete list.

She also interviews many celebrities who have cared for loved ones. A lot of people think celebrities have it easier – they have the money to hire a caregiving army. While for some of these high profile people that may be true, most, if not all, still climb into the caregiving roller coaster – the ups and downs of navigating a fragmented health care system, getting an older parent to communicate or comply with helpful services, digging into their own pockets (no matter how deep) to pay for the costs of care. Caregiving is the great leveler in our society – it cuts across all socioeconomic boundaries – all gender, age, race, religion, geography and economic status boxes that may otherwise separate us.

We celebrate the 65 million this month and every month. You are the nation’s largest volunteer health care workforce and we thank you for your service and want to keep you well.

To that end, we have the following for you to check out:

Caregiving Club’s Me Time MondayTM  – a series of videos to help give you tips on how to balance self-care while caregiving. Created in partnership with the Caregiver Monday Campaign.

Caregiving Club’s Book Lovers List for some great books we find help caregivers.

Sherri Snelling’s “My Favorite Things” – services and products we love to help caregivers.

Caregiving Club Resources – We will launch our Caregiving Resources list this month so look for those helpful links to the services, organizations and products that will help you on your caregiving journey!

Falls Prevention Kicks Off Fall

Sept 22 is the first day of fall kicking off Falls Prevention Awareness Week

Sept 22 is the first day of fall kicking off Falls Prevention Awareness Week

Injuries and health issues from falling are big concerns as we age. In fact, every 28 minutes a senior falls at home. Today, (Sept 22) is the first official day of fall and also the day we kick off the Falls Prevention Awareness Week running through Sept. 28.

Read my article for PBS Next Avenue about a falls prevention movement called Falls Stop, MOVE STRONG –  a great program to keep you moving and prevent falls.

Moving Together to Prevent the Risk of Falls

 

Tom Grubb - Fall Stop, MOVE STRONG student

Tom Grubb – Fall Stop, MOVE STRONG studentBS Next Ave Sept 2016)

Verine Morris - Falls Stop, MOVE STRONG student

Verine Morris – Falls Stop, MOVE STRONG student

TV Icon Norman Lear on Longevity, Laughter & Love for America

Norman.tifAs the TV industry honored itself tonight with the annual Emmy Awards (normally we get excited by these events but woefully tonight was a yawn), we offer something far more entertaining: our CEO Sherri Snelling’s interview with TV icon Norman Lear.

At age 94, Lear is the definition of aging well – which is why we showcase him as part of September’s Healthy Aging Month.

Sherri’s interview with Lear is insightful as he believes laughter is essential to living longer. And, in an era when patriotism is being attacked daily, Lear talks about his love for America and why we all have an obligation to uphold the principles and promise of the Constitution and our Declaration of Independence. For you history buffs, Lear owned one of the few Dunlop broadsides – an original copy of the Declaration of Independence — and toured it around the United States over a dozen years ago so that U.S. citizens, especially younger generations, could see “America’s birth certificate” firsthand.  Now that’s putting on a show!

Along those patriotic lines – we give it a caregiving spin — check out below Sherri’s recommendation for the Caregiver Bill of Rights.

Click here to read Sherri’s interview with Norman Lear for PBS Next Avenue:

Norman Lear – Longevity, Laughter, Love of America

Click here to read Sherri’s article on the Caregiver Bill of Rights for Huffington Post:

Let the Caregiving Movement Begin with the Caregiver Bill of Rights

9/11 Created Heroes and Family Caregivers

sept-11-we-will-never-forget

It’s been 15 years since 9/11 – my generation’s Pearl Harbor and another day in American history that will “live in infamy.”

united-93Many, including myself, are reflecting today on the horror that created heroism out of the ashes of Ground Zero, the Pentagon and the fields in Shanksville, Pennsylvania. (I just watched the amazingly moving film United 93 on the History Channel – thank you for making your programming all day today about remembrance of 9/11).

 

 

But there is another group who deserves our praise and support – a group who had no choice in their role and who were the unwitting recipients of the fall-out of the World Trade Center (WTC) attacks:  caregivers.

Since that beautifully sunny day in New York City 15 years ago, beyond the almost 3,000 families who lost loved ones in the attacks, the dark shadow of death has visited more than 1,000 families.  These were not the more than 3,000 victims trapped inside the burning, collapsing Towers and explosion at the Pentagon or in the downed United 93 airliner – these are the post-9/11 deaths linked to environmental hazards from “the pile” at Ground Zero.

Many of the first responders – those firefighters, police officers, Port Authority officers, sanitation workers and other survivors – who worked endless hours amidst the dust and debris that became the gaping hole in New York’s Wall Street district have since been suffering from respiratory and pulmonary problems, gastrointestinal problems, PTSD and even cancers from the toxic dust cloud that enveloped the city. In 2011, the National Institute of Safety recommended more than 50 types of cancer be covered for 9/11 responders through the World Trade Center Health Program.

According to an ABC News report, “Those who worked at the WTC site seem to be at increased risk of cancer, especially thyroid cancer, melanoma and lymphoma. According to a study released of nearly 10,000 New York firefighters (half of whom worked at the WTC site), those from the site are 32 percent more likely to have cancer.”

You can read my 9/11 15th Anniversary article for PBS Next Avenue here.

Since I view America’s family caregivers as the first responders in the health care and long-term care crisis in this country, here are my thoughts on how to prepare to care in any disaster:

NEW YORK, NY - SEPTEMBER 14: US President George W. Bush (L), standing next to retired firefighter Bob Beckwith, 69, speaks to volunteers and firemen as he surveys the damage at the site of the World Trade Center in New York in this 14 September 2001 file photo. Bush was presented with the same bullhorn he used to address the rescue workers in this photo at a ceremony 25 February 2002 in the Oval Office of the White House in Washington, DC which was attended by Beckwith and New York Governor George Pataki. The President said the bullhorn would be put on display at his father's Presidential Library. (Photo credit should read PAUL RICHARDS/AFP/Getty Images)

(Photo credit: PAUL RICHARDS/AFP/Getty Images)

Never fail to communicate

One of the Monday morning quarterback elements of September 11th was the appalling breakdown of communication between the various agencies established to safeguard our citizens.  Communication breakdown can also occur when you face a family caregiving situation.

Sensitivities to having those uncomfortable conversations about long-term care with your loved one, denial our loved one is ailing or declining, lack of communication or agreement between family members involved can all lead to a lack of unpreparedness.

This puts us in a similar situation as the first responders for 9/11 – dealing with a crisis.  By having the conversation with your loved one and other family members prior to the crisis, you can then have a plan in place to take some of the stress out of the situation and make your caregiving journey Iess fraught with emotional fall-out.

911cover_newsweekCome together

What is so inspiring about the reaction to September 11th was the spirit of Americans to put aside their differences, their selfish needs and care for strangers during a time that connected all of us.

When it comes to caring for a loved one, many caregivers have told me they feel like they are “all alone.”

What 9/11 taught us is we are not alone – we are in this together.  Not only are you one of 65 million caregivers, but there are family, friends, neighbors, co-workers who can help you in your caregiving responsibilities.

Connect with your social network on tasks they can help you with – it will take some of the burden off of your shoulders, help you avoid the typical caregiver “burn-out” and give you the resolve and stamina to continue to care for your loved one.  Two of the online communities that help connect circles of care for caregivers are Lotsa Helping Hands and CaringBridge.  Both sites provide a place for caregivers to receive help from volunteers and post information about their loved one.  Lotsa also has communities dedicated to veterans, Alzheimer’s and other types of caregivers working with more than 50 non-profit partners.

A visitor kisses the memorial wall at Shanksville, PA - site where the first 9/11 Citizen Heroes - the crew and passengers of United Flight 93 -took on their attackers

A visitor kisses the memorial wall at Shanksville, PA – site where the first 9/11 Citizen Heroes – the crew and passengers of United Flight 93 -took on their attackers

Messages of love

One of my favorite movies, Love Actually, opens with a wonderful story about how the terrorists of 9/11 sought to create hatred and divide us when in actuality they brought us together as one nation and one world.  All the messages on 9/11 to friends, family and even the heroes on the plane United Flight 93 to their loved ones before they took on their hijackers – were about love.  Love does have the power to conquer evil – we have seen it firsthand.

 

When it comes to caring for a loved one who is ill, aging or has a disability, there are many feelings:  concern, sadness, confusion, anger, frustration, guilt, helplessness, exhaustion.  What is amazing to me is in the face of all these complicated emotions, the one that stands out, the one that almost all the caregivers I have worked with express is, “I do this out of love.”

There is something rewarding about being a caregiver and the ability to show and give love is one of the most powerful and life-affirming experiences we can experience.

Take time to communicate your message of love and come together with those you care about.  And if you know a family caregiver or anyone touched by September 11 – give them a hug or a call today and just say, “Thanks.”

 

©2016 Sherri Snelling

September is Emergency Preparedness Month

sept-emer-prep-month

Being prepared for caregiving means also knowing the emergency plans to help your older loved one – whether they are “aging in place” at home or live in an assisted living or other facility.

After Hurriance Katrina, a report found 139 nursing home residents died because the facilities did not have the proper disaster plans in place. After Hurricane Sandy hit the tri-state area, many homebound seniors went hungry awaiting emergency meal deliveries. When it comes to natural or manmade disasters, our senior population is among the most vulnerable.

What do you need to know to prepare?

Read our CEO Sherri’s Snelling articles about caregiver emergency preparedness – it will bring you peace of mind when Mother Nature is having a bad day:

Why Caregivers Need to Plan for the Worst – Emergency Preparedness (originally published on PBS Next Avenue)

Combating the Senior Hunger Crisis (originally published on PBS Next Avenue)

 

November – National Alzheimer’s Awareness Month

nov-natl-alz-month

In November we highlight National Alzheimer’s Awareness Month to create education for a disease that is becoming our future health care epidemic. According to the Alzheimer’s Association, more than 5 million Americans have Alzheimer’s disease today – and that number will grow to 13.8 million by 2050.

This degenerative disease (and the most common dementia diagnosis) is the only cause of death in the Top 10 (ranking 6th) that has no cure, no prevention and cannot be slowed. One in three seniors will die with Alzheimer’s disease and more men and women will die from Alzheimer’s than breast and prostate cancer combined.

While we wait for a cure, more than 15 million are caregivers for those with dementia. Women are disproportionately impacted by Alzheimer’s – two-thirds of those with the disease are women and three in five caregivers are female family members.

And, as with many disorders and diseases affecting the brain (autism, Parkinson’s, PTSD), Alzheimer’s carries a challenging societal stigma. That is why we need to educate ourselves about this disease, its impact on all of us and how we can be part of the fight for a cure. Check out the Alzheimer’s Association and USAgainstAlzheimer’s Network for more information. You can also join the Brain Health Registry – whether you or a family member has been diagnosed with Alzheimer’s or NOT – more clinical trial research is needed to find a cure quickly.

Read our CEO Sherri Snelling’s articles and interviews with celebrities that have been impacted with this disease:

alzheimers-15-million-famous-faces

B. Smith & Dan Gasby on Alzheimer’s (originally published on Forbes.com)

Brooke Shields – endless love in caring for her mom

Diane Keaton – Sandwich Generation caregiver

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

Jill Eikenberry & Michael Tucker – caregiving team for her mom with dementia

Joan Lunden – coast to coast caregiving

Jodie Foster – Golden Girl Shines a Spotlight on Her Sandwich Generation Role (blog)

Kimberly Williams Paisley Chronicles Her Mother’s Dementia (PBS Apr 2016)

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

Nancy Reagan’s Caregiving Legacy (originally published on Forbes.com)

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

Rizzoli & Isles Creator Campaigns to Solve Alzheimer’s (originally published on Huffington Post)

Seth Rogen Getting Millennials to Care About Alzheimer’s (originally published on PBS Next Avenue)

Still Alice May Be the Movie That Sparks the Alzheimer’s Movement (originally published on PBS Next Avenue)

Sylvia Mackey – Hall of Fame Caregiver Who Changed the NFL

Amour – A Caregiving Movie Review (originally published on Huffington Post)

And more from Sherri Snelling on Alzheimer’s disease:

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

Alzheimer’s Epidemic Hits Women Hardest (originally published on Forbes.com)

Caregiving Conversation Between Your Heart and Your Head (originally published on Huffington Post)

Dementia Caregiver Stress and Long-Distance Caregiving (originally published on PBS Next Avenue)

The Longest Day honors the long good-bye

Watch our videos on Alzheimer’s and with celebrities impacted by the disease:

 

 

October 24 – United Nations Day

 

oct-united-nations-day

According to the International Alliance of Carers Organization (IACO), more than 63 million family and friends worldwide provide unpaid care for a loved one. The mission of IACO is to build a global understand and respect for the vital role of family caregivers.

Since 1948 as a global community we have celebrated United Nations Day (this year it’s on October 24) – the coming together of nations addressing world issues and forging global peace, prosperity and protection. We thought it might be a nice time to also celebrate the world’s caregivers – those providing peace, prosperity in aging and protection for our older or vulnerable loved ones.

world-in-your-handsOur CEO Sherri Snelling, wrote an article for the Huffington Post and shared her thoughts on caregiving and how it really is a small world after all:

Caregiving Is A Small World After All

 

 

July 4 is Independence Day

JUL 4 Independence Day

Independence is something we all want and was a gift to newly minted Americans by our Founding Fathers 240 years ago today.

For some, the weight of caregiving for a loved one threatens to capsize our own independence and freedom. How can you care for a loved one without losing the need to care for yourself?

To guarantee the freedom a newly formed nation sought in our precious Declaration of Independence and further cemented in the Constitution, the prescient Founding Fathers, led by James Madison,  created a Bill of Rights in 1789. Virginian Robert Morris argued for these amendments to “protect the individual if the government should become oppressive.”

Over the years, several organizations have put forth guidelines for caregivers to protect their rights while they protect and care for loved ones.  Our CEO Sherri Snelling has cobbled together her version of the “Caregiver Bill of Rights” and created a Me Time Monday on the 10 aspects of caregiving rights.

A reminder on this day of all days that caregivers rights are as important as the care recipient’s and should be not overlooked.

Read: Caregiver Bill of Rights

Let the Caregiving Movement Begin with the Caregiver Bill of Rights

bill of rights croppedAs we celebrate American Independence Day, it brings to mind how dependent we are on our nation’s 65 million caregivers.  Over the next 20+ years, the next civil rights issue we will face is a growing older population with more seniors needing care – whether diagnosed with a disease, disorder or living with a disability – and the need to recognize and support their family caregivers.  Particularly during July’s National Sandwich Generation Month, we celebrate those who are juggling children, career and caregiving.

Which is why we need a Caregiving Movement similar to other movements and milestones in the last century:

  • The Women’s Movement: Women won the vote in 1920 and 50 years later entered the workforce in droves creating an evolution in work and family life. Today, women comprise 47 percent of the entire U.S. workforce.
  • Civil Rights Movement: Despite becoming emancipated by President Abraham Lincoln in 1863, African Americans took to the streets and the mall in the nation’s capital 100 years later in 1963 to declare their equality led by Reverend Martin Luther King, Jr. Today, we have an African American president and more than 40 Congress men and women of African American descent.
  • Gay and Lesbian Rights Movement: In the 1980s there was a cultural shift in the LGBT community and Gay Pride parades became more celebratory than radical events. In June 2013, the Supreme Court struck down a California law barring same-sex couples from marrying and receiving federal benefits as part of their union.  A Pew Research poll shows 45 percent of Americans approve of the Supreme Court’s decision – up more than half from Gallup polls on the topic 20 years ago.

The Caregiving Movement

What’s next?  Family caregivers comprise the largest volunteer health care workforce in our country – 65 million strong. Caregiving also crosses all socio-economic boundaries – it is blind to race, religion, age, geographic location, sexual orientation and income bracket. According to AARP, the annual societal value for the unpaid hours of care provided is more than $450 billion – $42 billion more than the sales of Wal-Mart, the nation’s largest retailer.

Founding FathersMore than 240 years ago, our forefathers set in motion the greatest human experiment in civil liberty the world has ever known. Every July 4th we celebrate their courage, their vision, their dreams for a future where all can live in freedom.

In the late 1700s, the average lifespan was only age 40 (although if you reached age 50 you could expect to live another 20 years). I doubt any of the founding fathers expected the longevity we experience today where 20 percent of those age 65 will live to 90 and 1 in every 50 boomer women will reach age 100.

However, of the seven most well-known Founding Fathers, only two did not reach their 80s (George Washington died of illness at 67 and Alexander Hamilton was killed in a duel at age 49).  The remaining five lived to be octogenarians: John Jay (83), Benjamin Franklin (84) and James Madison (85), and even more coincidentally, both Thomas Jefferson (83) and John Adams (90) died not only at unexpectedly old ages but also on the same iconic day – July 4, 1826.

Kicking Off the Caregiving Movement with the Caregiver Bill of Rights

While our forefathers may have been as unprepared for the aging of America as we are today, they gave us the guidelines to create a Caregiving Movement. With that premise in mind, I present to you my version of the Caregiver Bill of Rights.

  1. The right to have balance between caring for my loved one and caring for myself. This includes my desire to avoid the “Caregiver Achilles Heel” – reluctance to ask for and accept help. I will maintain routines and plans as best I can and seek help so as to not lose myself while on this caregiving journey.  I will accept help provided to me by family and friends so I do not feel I am all alone.

 

  1. The right to receive a financial break or tax credit for caring full-time for my loved one. In the same way Americans are granted tax credits for dependent children, I should be granted tax credits for caring for parents who are dependent on me for their constant care.

 

  1. The right to work for an employer that understands and supports caregivers. As part an aging workforce, more and more of us will face the life event of caregiving while on the job. Today, 7 out of 10 caregivers are juggling work and caregiving and represent 15 percent of the U.S. labor force. I have the right to work for an employer that will provide me with the employee assistance to maintain my work performance and productivity, my own health and wellness, and support for my loved one without fear of reprisal or dismissal.

 

  1. The right to expect the nation’s legislators to acknowledge the valuable service I perform and to enact policies that not only support those with the illness or disability but support their family caregivers as well. This includes acknowledging my role as a first responder in the long-term-care crisis in this country. I should expect our legislators to ease the burden of caregiving, especially financially, so I can continue to perform as part of the largest volunteer health care workforce in the country.

 

  1. The right to expect my loved one’s medical advisors and health care professionals to recognize my critical role as part of the primary and long-term care team. I should expect health care professionals to communicate with me without violating my loved one’s privacy rights so I can best care for my loved one.  Especially when it comes to transitions of care, I become a critical player in helping my loved one – the patient – transition from hospital to home or other facility and to maintain their health, medication compliance and other aspects of care that will decrease hospital readmissions.

 

  1. The right to easily find resources that will help me in my caregiving journey. Whether these services are provided by public or private organizations, every caregiver should know where to turn to get the help and education they need at whatever stage of caregiving they are encountering.

 

  1. The right to not take on the financial burden of caregiving all by myself. I should not have to put my financial future at risk to care for my loved one today. It should be the obligation of elected officials and the health care system to ensure costs of care should not bankrupt our citizens and our country.

 

  1. The right to make choices that will help me manage my stress without feeling guilt or depression that I am focusing on myself at times rather than solely on my loved one. This includes the right to take a break – for a few minutes or a few days – and to avoid feeling guilty to care myself as well as my loved one. The need to seek respite in my caregiving duties is essential to my ability to continue caring for my loved one long-term.

 

  1. The right to speak up and expect my close circle of friends and family to understand my caregiving role and to support me in any way they can. This includes the right to expect I can reach out to them so I do not feel alone.  Also that my spouse, my adult children, my siblings, my co-workers and my close friends will lift me up when I am down and help me keep going on this caregiving journey.

 

  1. The right to expect “life, liberty and the pursuit of happiness” even while so much of my time, energy and attention is going to care for my loved one.

 

©2016 Sherri Snelling

Some Famous Men Step Into Caregiving Spotlight

We think of the typical caregiver being a boomer-age woman caring for her older parents yet according to the National Alliance for Caregiving, men make up 34 percent of the 65 million caregivers across the country.

And those are men who are in primary caregiving roles – it does not represent the husbands, brothers and friends who are providing the support network for other caregivers. Whether it’s giving a sister a break like Patrick Dempsey did for his sisters who cared for their mom with ovarian cancer or providing the much-needed comfort and care for a caregiving wife like Seth Rogen does for his wife Lauren Miller who cares for her mom with Alzheimer’s disease, men are essential to the caregiving nation we are becoming.

This article celebrates our men who are caregivers – heroes all.  Following is a list of men you might know who have all been on the caregiving journey.

To the men of caregiving – we salute you!

Sons caring for parents

 

Baldwin-BrothersThe Baldwin Brothers – Alec, William, Stephen and Daniel comprise the famous Baldwin brothers – actors and activists all. Yet in their hearts they are mama’s boys – helping their two sisters care for their mom, Carol, who successfully battled breast cancer. Carol is one of the 2.9 million breast cancer survivors in the U.S. according to the American Cancer Society.  She formed the Carol M. Baldwin Breast Cancer Research Fund where all four sons have been actively involved in helping to raise more than $3 million for medical research grants to find a cure.

Patrick Dempsey dreamstime_m_20160433 (2)Patrick Dempsey –On TV he plays “Dr. McDreamy” the brain surgeon eye candy on Grey’s Anatomy. In real life, Patrick has helped care for his mom, Amanda, as she survived two bouts of Stage IV ovarian cancer.  Providing the much-needed support for his two older sisters, Patrick commuted between his home base with his wife and children in Los Angeles cross country to his hometown in Maine where his mom and sisters live.  According to the National Cancer Institute, about 60-80 percent of ovarian cancer patients face a recurrence of the disease. Because of the stealth nature of ovarian cancer, Patrick said in an interview with Web MD, “Be relentless, question information, and double check it. Get a second opinion. Do your research.”

Seth Rogen dreamstime_xs_23106908 (2)Seth Rogen – Star of movies such as Knocked Up and The 40-Year-Old Virgin, comedic actor Seth Rogen is part of the caregiving team along with his wife who care for her mother with Alzheimer’s disease.  Diagnosed at age 55, Seth was shocked at how early Alzheimer’s can strike a family and how little people of his generation know about the disease.  Seth and his wife are two of the 15 million Americans who care for someone with dementia. This star of The Guilt Trip with Barbra Streisand (whose mom also had Alzheimer’s), Rogen realized Alzheimer’s is no laughing matter.  He is now an advocate for the Alzheimer’s Association and has created, along with wife Lauren, the annual “Hilary for Charity” comedy improve event with fellow comedians such as Paul Rudd and Steve Carroll to raise funds and awareness among younger generations for the disease.

Dwayne Johnson dreamstime_xs_23274249 (2) Dwayne “The Rock” Johnson – Playing superheroes, military warriors and loving dads on film and starring in the latest Fast and Furious movie, former professional wrestler Dwayne Johnson has also cared for a mom through lung cancer.  In 2010, Dwayne announced his mom had beaten stage 3 lung cancer where she had undergone chemotherapy and radiation. Dwayne told Jay Leno on his late night talk show, “She fought like a warrior.”  Just this summer. Dwayne purchased a white Cadillac for his mom, who had her car repossessed when he was growing up and she was a struggling single mom, in celebration of her ongoing cancer victory and as a thank you for always being there to support his dreams.

Rob Lowe dreamstime_m_19870699 (2)

Rob Lowe – In the ‘80s he was the heartthrob member of the famous Brat Pack and more recently his career has flourished in TV as a star in both dramas and sitcoms on The West Wing, Parks & Recreation and a recent campy turn in the HBO feature on Liberace, Behind the Candelabra starring Michael Douglas and Matt Damon. Rob has also been a caregiver for both is mother and father who divorced when he was still in his teens. He lost his mom (and his grandmother and great-grandmother) to breast cancer and helped his dad through a successful battle with lymphoma. An advocate for both diseases, Rob has been the Lee National Denim Day ambassador for breast cancer and filmed a PSA TV spot for lymphoma about the risk of infection and other side effects of chemotherapy.

Joey McIntyre dreamstime_m_22662550 (2)Joey McIntyre – The ‘90s boy bander is out on the road with his Boston bandmates for a nostalgic tour for the older yet sexier NKOTB (formerly known as New Kids On the Block).  As one of nine kids growing up in Needham, Mass., Joey has also stepped into the spotlight as advocate and caregiver for his mom who was diagnosed with Alzheimer’s disease.  When I interviewed Joey at the Alzheimer’s Association A Night At Sardi’s gala event (watch the interview with Joey here), he told me, ““It’s a process and it’s different for everybody . . . it is bittersweet because with my mom, she is still there, she’s got the one liners and she is so funny and she is still a performer but she doesn’t remember five minutes ago . . . it’s tough for the families.”

Bryan Cranston, Peter Gallagher, Victor GarberBryan Cranston (AMC’s Breaking Bad), Victor Garber (TV’s Alias, Titanic) and Peter Gallagher (USA Network’s Covert Affairs) – These three sons and TV/film stars have all cared for moms with Alzheimer’s disease.  Peter, who cared for his mom for the more than 20 years she lived with the disease, shared with me at an Alzheimer’s Association event, “An Alzheimer’s diagnosis can be as devastating to the caregiver as to the person diagnosed. Doing it yourself, I don’t know how long you are going to last . . . [but] the more you understand about the disease the better.”  He also said that this disease can be “embarrassing” and “terrifying” but that is why the Alzheimer’s Association is a great place to start to find the help and support needed. (watch my full interview with Peter here)

Henry WinklerHenry Winkler – Even though it’s been 40 years since Happy Days appeared on TV screens, the cool biker with a heart, “The Fonz” is an enduring pop culture icon.  The actor who brought the Fonz to life is also a caregiver.  Henry serves as the ambassador for the Open Arms: Raising Awareness of Upper Limb Spasticity educational campaign with a mission to help those who are impacted by upper limb spasticity and do not know where to turn for help.  Personally impacted by the issue, Henry’s mother suffered a stroke and for 10 years Henry helped care for her she suffered from upper limb spasticity.

Husbands caring for wives

valerie harper and tony cacciottiTony Cacciotti – You may not know his name but you know his wife as “Rhoda” from the famous ‘70s TV show The Mary Tyler Moore Show. Husband of TV actress Valerie Harper who was recently diagnosed with terminal brain cancer, Harper offered in interviews how “bereft” her husband was and that he was having a tough time handling the diagnosis.  At first, he hid the diagnosis from her until they received a second opinion.  Since then the couple are living life fully each day.  Harper has said, “We’re all terminal – it’s just a matter of when and where and how.”

Brosnan, Short, Wilder, MurdockPierce Brosnan (Bond movies, Remington Steele), Martin Short  (Saturday Night Live), Gene Wilder (Willa Wonka and the Chocolate Factory, Young Frankenstein) and David Murdock (billionaire owner of Dole Foods) – All four lost wives to ovarian cancer, known as the silent disease because symptoms are often masquerading as other health issues.  Brosnan helped wife Cassandra battle the disease for years until she succumbed at age 42. Martin Short lost wife Nancy Dolman to the disease.  Gene Wilder and David Murdock took the grief of their loss and turned it into centers for helping others and finding a cure.  Wilder, whose wife was comedian/actress Gilda Radner, sought various treatments for her cancer for three years.  In her memory he co-founded Gilda’s Club, now part of the Cancer Support Community. Murdock lost wife Gabrielle at age 43 and invested $500 million in personal wealth to create the leading research institute, North Carolina Research Campus, dedicated to using plant-based solutions to prevent chronic illness such as cancer.

paul-mccartney1Paul McCartney – As one of the famous Beatles, he sang, “Will you still love me when I’m 64?” When it came to love, Paul’s muse and partner for 29 years was beloved wife Linda.  He would have loved her beyond age 64 if she had survived.  Sadly, he lost her to breast cancer when she was only 56. In an interview with the Daily Mail, McCartney admitted to needing help with the loss, “I got a counsellor because I knew that I would need some help. He was great, particularly in helping me get rid of my guilt [about wishing I’d been] perfect all the time.”

mitt romneyMitt Romney – As a 2012 presidential candidate and successful former governor and businessman, Romney attributes much of his success in life to his wife Anne.  She gracefully lives with multiple sclerosis, an autoimmune disease affecting 2 million people worldwide.

U.S. Open - Round OnePhil Mickelson – The three-times U.S. Masters Golf Tournament pro became a caregiver in 2009 when his wife, Amy, was diagnosed with breast cancer.  He suspended his playing career to help his wife through chemotherapy and care for their young children.

Hal Holbrook, Dixie Carter dreamstime_xs_18921771 (2)Hal Holbrook – Film actor Holbrook (Lincoln, Water for Elephants, Into the Wild) cared for his actress wife Dixie Carter (Designing Women) through her battle with endometrial cancer which she lost in 2010.

Facebook photoMichael Tucker – An early breakout role in Diner led to his best known starring role in TV’s L.A. Law where he appeared on the same screen with wife Jill Eikenberry. They are a great example of a caregiving team caring for Jill’s mom who has dementia.  Mike chronicled their caregiving journey in his humorous book, Family Meals.

Dads caring for special needs children

Montegna, Peete, GorhamJoe Montagena (Godfather Part III, TV’s Criminal Minds), Rodney Peete (NFL star quarterback),  Christopher Gorham (USA Network’s Covert Affairs)All three of these fathers have children on the autism spectrum disorder (ASD).  Joe’s daughter Mia, now in her 20s, was born prematurely and eventually was diagnosed with autism.  Rodney’s son, R.J., was diagnosed at age three and is now a teen.  He wrote a book about his struggles in coping with his son’s diagnosis, Not My Boy! A Father, A Son and One Family’s Journey with Autism and runs the non-profit organization, HollyRod Foundation, he and wife Holly Robinson Peete founded to help families facing Parkinson’s disease and autism. Christopher’s son was diagnosed a few years ago at age 9 with Asperger’s syndrome.  He has talked about getting outside help with everyday tasks such as grocery shopping and housecleaning so he and his wife can dedicate time to the therapies and interventions needed for their son while also caring for two other children.

colin farrellColin Farrell – known for his bad boy behavior and mesmerizing film roles, Colin says his life changed when his oldest son was diagnosed with a rare genetic disorder known as Angelman syndrome.  Characterized by jerky movements, sleeping problems, developmental disability and seizures which can be treated, there is no cure for the disorder.  Colin has said in interviews when your child takes his first steps, you hold your breath but when your special needs child finally takes a step after being told he may never walk, “those first steps take you into a whole different realm.”

John McGinleyJohn C. McGinley –Best known for his starring role on TV’s Scrubs, he’s also starred in films such as Platoon, Wall Street  and most recently 42, John has a teen son with Down syndrome (DS).  A longtime advocate for DS organizations, he currently is on the board of the Global Down Syndrome Foundation.  One in every 691 births result in a child with DS and after age 40, DS adults have a 100 percent risk of Alzheimer’s disease as well.

Brothers caring for a sibling

Jamie foxxJamie Foxx – He’s an Oscar-winning star (Ray) and music artist but Jamie is most proud of his sister, DeOndra, who has not let her Down syndrome hold her back.  As an ambassador for the Global Down Syndrome Foundation, DeOndra has danced onstage with Denzel Washington and appeared with her famous brother in front of millions at the Grammys and even appeared in one of his music videos.  Caring for family comes naturally to Jamie – as he told Entertainment Tonight, “This little lady right here lives with me along with my other sister, along with my father and my mother. So, we’re one big happy family.”

Ashton Kutcher dreamstime_xs_21212521 (2)Ashton Kutcher –Starring on one of TV’s highest rated sitcoms, Two and a Half Men, Ashton is a loving twin brother to Michael who was born with cerebral palsy and cardiomyopathy requiring a heart transplant at age 13.  As the family anxiously waited for a donor heart, Ashton said he actually contemplated suicide just so he could save his twin brother’s life.  Michael told a People magazine reporter, “Ashton never left my side,” talking of his brother’s devotion. “He showed me the love one brother has for another.” Michael currently serves as a spokesperson for the Reaching for the Stars Foundation that helps children with cerebral palsy which his brother also supports.

Tommy Hilfiger dreamstime_m_16272164 (2)Tommy Hilfiger – Fashion designer Tommy has been a 22-year supporter of the Nancy Davis Foundation Race to Erase MS event mostly to raise awareness and funds for a disease his sister has lived with for more than 40 years.  His sister Dorothy, now 61, has lived with multiple sclerosis since her teens.  Her one-year-older brother, Tommy, one of nine children, told WebMD, “When you see someone’s life change as a result of a disease, it really hits home.”

Friends and Lovers

both-of-us-ryan-oneal-farrah-fawcettRyan O’Neal – He was the tragic star of the ‘70s movie Love Story in which he lost his love and soul mate (played by Ali MacGraw) to cancer.  But film turned to reality when he cared for long-time love Farrah Fawcett as she battled  and lost her life to anal cancer.  He chronicled their love affair and those last three years trying new therapies and traveling to Germany for experimental treatments to find a cure for her cancer in his 2012 book, Both of Us: My Life with Farrah.

 CastofCaregivers Cover FINALThese stories excerpted from A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care

©2015 Sherri Snelling