Caregivers of the East Wing – Celebrating First Ladies

On President’s Day, we honor two great men who have led this country through its creation and one of its most trying times – namely George Washington and Abraham Lincoln respectively.  And while feature films and mini-series have celebrated our former presidents, it is the First Ladies who have served as caregivers that I honor today.

Hillary Clinton, Nancy Reagan, Barbara and Laura Bush and the caregiving pioneer, Rosalynn Carter, are passionate advocates for our nation’s 65 million caregivers because they have taken the caregiving journey themselves. And, Michelle Obama showed the nation how to manage a multi-generational household when her mother moved into the White House to help the former First Lady with rearing daughters, Malia and Sasha.

When current First Lady Melania Trump takes up residence in the White House next month, she may not be caring for her older parents or other relatives but she has pledged to support women’s issues and there is no bigger issue for women today than the juggling act of caring for an older parent. And, First Daughter, Ivanka Trump Kushner, has been instrumental in pushing her father, President Donald Trump, into adopting an expanded family leave act for working caregivers of children and older parents.

Rosalynn Carter – The First Caregiver Pioneer

 

Long recognized as one of the pioneers of the caregiving movement, Rosalynn Carter is known for her famous description of the life event of caregiving in America:

 

 

You have been a caregiver

You are a caregiver

You will be a caregiver

Or someone will be caring for you

In her book, Helping Yourself Help Others – A Book for Caregivers, former First Lady Rosalynn Carter writes, “We can learn to approach caregiving as a blessing as well as a challenging task.”

She knows of what she speaks firsthand:  Rosalynn was only 12 years old when her father was diagnosed with terminal leukemia.  As the eldest daughter, she helped care for her ailing father and supported her mother by also caring for her younger siblings.  She took up caregiving again for several relatives with cancer after she left the White House and most recently was caregiver for her mother who died in 2000 at age 94.

Rosalynn’s gift to caregivers comes from a lifetime of understanding the challenges – emotional, physical and financial – that accompany caring for a loved one.  She was the first to hold a caregiver conference that identified “burn-out” that is so often a side effect of caregiving. She is also a long-time devoted and determined advocate for those Americans with mental health issues. It was the recognition of a national center to focus on the future caregiving issues facing America that led Rosalynn Carter to create the Rosalynn Carter Institute (RCI) for Caregiving at Georgia Southwestern State University in Americus, Georgia.

The mission of the RCI is to establish local, state and national partnerships with organizations focused on quality, long-term home and community based services to help caregivers.  The RCI activities include a variety of advocacy, academic, and awards and scholarship programs.  While many of the caregiver programs are Georgia-based, these programs are examples that help serve as models for nationwide caregiver support, education and training.

Nancy Reagan – The Legacy of Alzheimer’s and the Long Good-bye

When Nancy Reagan passed away last year, she left a legacy of advocacy for the disease that took her beloved “Ronnie”: Alzheimer’s. Nancy and Ronald Reagan’s touching affection for each other was evident in the letter former President Reagan wrote to tell the world he was suffering from this neurodegenerative disease that afflicts 5 million Americans today.  In the letter, President Reagan not only helped shine his celebrity spotlight on a disease many Americans did not understand, but he also highlighted the concern he had for Nancy who would be caring for him.  He understood the difficult emotional toll it would take on his wife and as the disease progressed, and the last 10 years of his life he did not even recognize her.

Today more than 15 million Americans are doing what Nancy did – caring for loved ones with Alzheimer’s – and suffering the emotional toll of caregiving for a loved one with dementia known as the long good-bye. While Nancy had the resources to care for her husband in ways most Americans do not, the emotional toll it took on her cannot be ignored.

What was perhaps most heartwarming was that the strained relationship Nancy had with her stepchildren and with her own son and daughter, actually improved over the course of President Reagan’s disease diagnosis and decline.  Family dynamics are sometimes difficult to navigate during caregiving and can lead to added stress and strife.  But, in this instance, it brought a family closer together which is one of the gifts that can come from caregiving.

After President Reagan’s passing in 2004, Nancy became one of the most passionate advocates for Alzheimer’s disease awareness and education and especially lending her voice and support for the research around embryonic stem cells that can hopefully lead to a cure.

Barbara Bush – Caregiver for a Chronically Ill Child and an Aging Husband

At this year’s Super Bowl, one of the most poignant images was Barbara Bush pushing her husband, wheelchair-bound President George Herbert Walker Bush (known as “41”) onto the field for the coin toss.

At age 91 for Barbara and 92 for George (who is the oldest living former President), it was only days earlier that both had been hospitalized (he with pneumonia and she with bronchitis). But football in Texas is serious business and it would take more than illness and age to keep the Bushes from participating in an American tradition. And, while both have had illnesses over the years, it is Barbara who has stepped up to care for her husband over the last several years even though he was determined to be a vital senior, skydiving on his 80th, 85th and 90th birthdays.

However, in 2012, Barbara Bush was called into service as caregiver George when he was hospitalized with bronchitis and his fever had spiked. As a spousal caregiver, Barbara joins more than 3 million other spouses who are caring for their husband or wife, and the one in three caregivers who are over age 65 when the become a caregiver. And the stress of having a spouse in declining health can accelerate the stress caregivers feel.

We often witness the stress of the presidency – look at all presidents during the campaign and then after they leave office where their white or gray hair betrays the emotional burdens they have lived through. It is fact that the stress of being president prematurely age the men who have held office. But it was Barbara who suffered incredible stress and depression and subsequent “white” hair after caring for her ill child and then experiencing the premature death of her four-year-old daughter Robin to leukemia in 1953 when Barbara was only 28 years old.

Hillary Clinton – Caregiving Daughter and Champion

In 2011, Hillary Clinton lost her 92-year-old mother, Dorothy Rodham.  While the details of her mother’s passing and possible illness were kept private from the invasive world of 24/7 news media, Clinton has been a long-time advocate of the nation’s caregivers when she was a senator from New York.  She supported several pieces of proposed legislation that offered more services to support those family mebers who are providing 80 percent of the long-term care to keep a loved one living at home as long as possible.

In an interview from Clinton’s campaign days for the Democratic presidential nomination, she credited her mother with giving her the tools — and toughness — to enter politics.  In the end, her mother had also given her daughter the tools to be a compassionate caregiver.

Laura Bush – Sandwich Generation Caregiver

Laura Bush, an only child who grew up in the oil town of Midland, Texas, played caregiver to both her mother and her father.  While campaigning with her husband George “W” Bush who was running for governor of Texas, her father was diagnosed with Alzheimer’s disease.  While Laura, who was raising twin daughters, Jenna and Barbara, played back-up to her mother who was primary caregiver, she poignantly wrote in The Shriver Report:  A Woman’s Nation Takes on Alzheimer’s about the impact to families when Alzheimer’s disease happens.

“What my mother noticed first was that my father could no longer fill out bank deposit slips. He would stare at the lines on the forms, a look of confusion washing over his face. So Mother began to make the deposits for him. We never got a diagnosis of Alzheimer’s or a specific form of cognitive failing. But we saw his mind erode. Once, he asked our daughter Barbara to get him some ‘B & Bs.’ He meant M&Ms, but he kept saying ‘B & Bs.’ In her 10-year-old way, she understood him and came out of the grocery store with the brown bag of the bright candy just the same.”

Laura stepped in again to care for her mother, Jenna Welch, who was diagnosed with and survived breast cancer when she was 78.  Laura’s support of Susan G. Komen for the Cause and her activism on behalf of women’s risk of heart disease has led her to play a leading role in women’s and caregiver health issues. She was an ambassador for The Heart Truth campaign created by the National Heart, Lung and Blood Institute and dedicated the inaugural display of the First Ladies Red Dress Collection at the John F. Kennedy for the Performing Arts in 2005.

First Lady, First Daughter – Sandwich Generation Champion and Made the White House a Multigenerational Household

Former First Lady Michelle Obama joined the ranks of caregiver growing up as the daughter of a father with multiple sclerosis.  Her experience in helping to care for a father with an autoimmune disease currently affecting more than 400,000 people in the U.S. – with 200 more people diagnosed every week – gave her early insights to the impact of caregiving on families.  Michelle has been a true champion of the Sandwich Generation – those caregivers squeezed between caring for two generations – children and older parents.

Michelle also turned the White House into a multigenerational household when her husband held office. She invited her mother, Marian Shields Robinson, to come live in the White House to help care for her daughters, Malia and Sasha, who were only 10 and seven respectively. Dubbed the “First Granny,” Robinson was the first live-in grandmother in the White House since Elivera M. Doud, the mother of Mamie Eisenhower, during the Eisenhower administration in the 1950s. Recently, Pew Research reported that one in five Americans – approximately 60 million – live in multigenerational households.

While women may be seen as “the power behind the throne,” these First Ladies are proof that women also put the heart into caregiving.

This is adapted from Sherri Snelling’s upcoming book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

 

©2017 Sherri Snelling

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.”

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.”

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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

My Favorite Things – CareLinx

My Favorite ThingsOne of our favorite things to do at Caregiving Club is find our favorite services, products and organizations to share with our loyal readers.

We debut the “My Favorite Things” list from Caregiving Club CEO, Sherri Snelling. As part of her role as a national caregiving expert, Sherri advises companies on how to best support caregivers. She serves on advisory boards and often asks these companies to provide a free offer or special promotion for Caregiving Club readers.

Click here to read about the 4 free hours of in-home care you can receive from CareLinx as the first company featured in “My Favorite Things.”

My Favorite Things – CareLinx

 

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Special for Caregiving Club Readers:

Click on the word CareLinx  in this article to receive 4 cost-free complimentary hours of in-home care from CareLinx. Click today to get the help you and your loved one need!

The in-home care arena is a booming sector of aging. We know that 10,000 baby boomers turn 65 every day. And, while we all live longer, we also know from AARP that 89 percent of those over 65 want to continue living in their homes as long as possible.

It’s a perfect storm – an ever-growing aging society who is living longer and desires to live out their years at home – yet who is caught in this silver tsunami? Family caregivers.

A few years ago, in-home care services were mostly bricks and mortar retail agencies – some national companies but many, many more were independent mom and pop operations based in local communities across the country.  Today, there are more than 12,000 in-home care agencies.

According to the Centers for Disease Control (CDC) 7.6 million who have a chronic illness or have been discharged from a hospital after an acute illness are being cared for at home. Much of this care is falling on the shoulders of the country’s 65 million family members who have stepped into a caregiving role, yet there is a physical, emotional and financial toll in caring for loved ones at home.

Consider the often prohibitive costs of in-home care according to Genworth’s annual Cost of Care Survey. The report shows families pay on average $45,760 per year for in-home non-medical care. If the finances are not there, some caregivers are leaving the workforce completely to care for aging loved ones that results in more than $300,000 in lost wages and benefits.

 

The Solution? CareLinx

As the nation’s first and only true online caregiver marketplace, CareLinx launched in 2010 and has grown to a professional caregiver network of 150,000 serving families in the top 50 metros across the U.S.

Why do I like CareLinx? Let me count the ways…

1. Trust

Source: KelleyLattaMinistries.com

Source: KelleyLattaMinistries.com

One of the hardest things caregivers face is how to allow for someone else to come into the home to care for your loved one.  We all know no one else can provide the tender, loving, personalized care that you can however…you are burning out, you need a break, you cannot afford to take any more time off work, you see this caregiving role is a marathon not a sprint.

 CareLinx care professionals are backed by liability insurance from Lloyds of London – the CareLinx $4 million SafeGuard Policy. In addition, CareLinx has done most of the legwork for caregivers – performing exhaustive background checks, ensuring credentials of its professionals and requiring ongoing quality reports from clients.

CareLinx MobileCareLinx professionals check in daily with family members by sending photos and other data of the care provided via smartphone communication with clients. Knowing when Mom gets her special chicken soup, ensuring dad gets a walk around the block or knowing the bedsheets are washed and replaced is the peace of mind elixir most concerned family caregivers need from in-home care service providers.

What is unique? The family gets to choose the professional caregiver they want and how much they will pay – based on perfect matches for the detailed care criteria families provide. As opposed to other agencies that just dispatch the available care professional, both the CareLinx care professional and the family decide to team up to provide the best quality care for the loved one.

This mutual agreement between both families and care professionals is uniquely different from traditional agencies who simply send an available care professional to the home. By offering “choice” to family caregivers and professional caregivers, CareLinx can report higher retention rates than the national average due to the higher satisfaction of both parties.

2. Cost Savings

Piggy-BankOne of the drawbacks or obstacles for families is the cost of having care in the home. Many family caregivers dip into their own pockets and savings or even leave work to provide the care a loved one needs.

If you felt the cost of care was unaffordable, think again. CareLinx consistently delivers 30-50 percent less cost to its clients over traditional agency costs. This is achieved because CareLinx is a dedicated online platform whereas most traditional agencies have overhead with retail stores and marketing costs (those TV commercials you see cost millions of dollars!). They also tack on a 50-150 percent commission fee. CareLinx takes a flat 15 percent fee.

 

3. A Built-In Care Team

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Almost without exception, family caregivers feel alone. This sense of isolation can lead to depression, stress and ultimately other health issues that can severely impact the caregiver.

With CareLinx you have a trusted, reliable resource for giving you a break and ensuring quality care while you are away from your loved one. Whether it’s for just an hour or a few days or a few years, CareLinx has a care team that surrounds you with expertise, compassion and support.

 

In addition to the CareLinx care professional you contract with, CareLinx also has Care Advisors who can guide families through the process, answer questions and are there to respond telephonically 24/7.

One reason CareLinx has grown so fast and has accumulated accolades (everything from a AAA rating from the Better Business Bureau to winning the Consumer Vote at a recent AARP Convention) is at the heart of the company is the soul of a caregiver. The company is powered by technology but it never forgets it is a caregiving service provider.  All the snazzy, bells & whistles apps created by tech geniuses in Silicon Valley cannot replace good old-fashioned compassionate caregiving.

CareLinx CEO Sherwin Sheik traveled the caregiving road with both his sister who has multiple sclerosis and his uncle who suffered from ALS. He knows that families need help and that the help needs to be affordable. He walked away from a lucrative senior executive health care job to start CareLinx.  He knew he could deliver the promise of better quality care in the home without breaking caregivers’ piggy banks.

In fact, most of Sherwin’s senior team at CareLinx have been a family caregiver – some to parents, some to spouses and other loved ones.

My Favorite ThingsAs part of my role on their advisory board, CareLinx is offering Caregiving Club readers something really special: Four (4) hours of free in-home care by clicking this link: CareLinx.

Let CareLinx become part of your care team today.

 

 

 

 

 

 

Liability Disclaimer: Sherri Snelling is a paid advisory board member of CareLinx. While her strategic counsel, spokesperson and other duties are paid by CareLinx, neither Sherri Snelling nor Caregiving Club are paid for clicks, links or new clients such as an affiliated marketing or sales arrangement. While Sherri Snelling provides her opinion of CareLinx, neither Sherri Snelling nor Caregiving Club guarantees the quality and satisfaction of the CareLinx services experienced by individual CareLinx client and thus, disclaims any liability that may result from your involvement with CareLinx.

Resource Links

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Jodi Foster’s Sandwich Generation Moment

Three years ago, Hollywood actress/director, Jodie Foster received the Cecil B. DeMille Award for a Lifetime Achievement in Film at the Golden Globes ceremony. While Foster’s accomplishment in movies is formidable it was her heartfelt speech that night about her mother that riveted the audience and TV viewers.

For more than 7 minutes she commanded the stage and a worldwide audience in an emotional stream of consciousness as this most private of celebrities shared intimate thoughts about her mother, Evelyn “Brandy,” with dementia in the same way she has shared her art with us through her compelling film performances for four decades.

She spoke directly into the camera as if the crowded room of Hollywood luminaries and millions of viewers at home went out of focus and she was speaking to the single mom who held her 53-year-old daughter’s hand through show business since she was three years old.

“Mom I know you’re inside those blue eyes somewhere and that there are so many things you won’t understand tonight,” said a teary Foster. “But this is the only important one to take in:  I love you, I love you, I love you.  And I hope that if I say this three times, it will magically and perfectly enter into your soul, fill you with grace and the joy of knowing that you did good in this life.  You’re a great mom. Please take that with you when you’re finally OK to go.”

jodie-foster-and-her-mother-evelyn-gettyimagesThis revelation of her 87-year-old mother’s Alzheimer’s disease (although she never said “Alzheimer’s”) was not the first time Foster has talked about her mother’s illness but it was the most high profile and profoundly public acknowledgement of her Sandwich Generation caregiving role. Her young sons, Charles and Kit, were in the audience as their proud mom talked of her boys being the reason she is inspired while she also said her mother was the “greatest influence of my life.”

In a 2010 interview with the Daily Mail in the UK, she said about her mother’s illness, “She’s really a new person, not the mom I grew up with, and I have a real nostalgia for who she was. She spent years and years alone because she never remarried after my father left and she raised us by herself.  She used to say: ‘I’m an only child so I prefer to be alone,’ and she didn’t keep up with her friends.”

According to the Alzheimer’s Association, more than 5 million Americans and 36 million people worldwide are diagnosed with dementia and an additional 17 million Americans care for someone with dementia or Alzheimer’s disease (the most common type of dementia).  In fact, every 67 seconds someone new develops the disease and while early on-set Alzheimer’s can be diagnosed when someone is in their 40s or 50s, one out of every two people age 85 or older will develop dementia.

Jodie Foster joins the ranks of the 24 million Sandwich Generation caregivers – those caring for children still at home while simultaneously caring for an older parent – including high-profile caregivers such as Diane Keaton, Maria Shriver, Brooke Shields, Joan Lunden and Holly Robinson Peete.

While some caregivers of those with Alzheimer’s find it hard or almost impossible to care for their loved one at home because of violent outbursts, sundowning (extreme paranoia and frightfulness that can including screaming that begins at dusk) or wandering off, Foster has stated she will keep her mom in her home as long as possible.

When asked in an interview if she would consider seeking residential care for her mother, she said, “Oh God no way. I’m going to feel good — I’m going to feel that the end honored her and that she didn’t have to lose her dignity.

“Dementia is an interesting thing,” continued Foster. “It’s the hardest thing I’ve been through and yet also strangely sacred… I’m just here to care for her. I have no axe to grind. Mine will be the last face she sees.”

Jodie Foster has never wished to be a symbol for her choices in life: Child actor free of scandal (if you don’t count the pre-pubescent prostitute she played in Taxi Driver which had some people up in arms); college co-ed career disrupted by a would-be presidential assassin (that forced her even further into her privacy shell); actor turned director (whose latest offering is Money Monster starring George Clooney and Julia Roberts opening this month); but I would love it if the Sandwich Generation could count on Jodie to continue to raise awareness for a role many of us will play in life: caregiver.

©2016 Sherri Snelling

Difference in Caring for Moms versus Dads?

Grandma, Granddaughter 3 dreamstime_m_22574735 (2)Sometimes the physical aspect of caregiving is the same for older parents – helping feed, bathe, transport them. But the emotional and communication side of caregiving can be very different when it comes to caring for our Moms versus caring for our Dads. Read our CEO Sherri Snelling’s article for PBS Next Avenue about the Difference in Caring for Moms versus Dads.

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

 

Joan Lunden’s Coast to Coast Caregiving Coverage

NewsletterAdI’ve had the privilege of interviewing Joan Lunden several times over the last few years. She is an inspiration – as a woman warrior battling breast cancer, as a mom of seven (!!), as a successful businesswoman and as a caregiver to her mom whom she lost in  2013. I  first met Joan on the set of a special TV program Joan hosted for RLTV, “Taking Care with Joan Lunden,” where Joan interviewed me as an expert on caring for an older loved one at home.  The following is an excerpt from my book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, which includes Joan’s caregiving story.

Wake Up Call to Caregiving

For 17 years throughout the 1980s and 1990s, she woke us all with “Good Morning America” as co-host of ABC-TV’s national morning show.  But, it was 10 years ago that Joan Lunden, the sunny, blonde, California-born and raised TV journalist received her own wake-up call.

She remembers it like it was yesterday.  In her words, “It 100 percent shook me up.”  It was back in 2005, that her brother Jeff, who had long suffered from Type II diabetes, passed away.  Joan had been caregiving for both her ailing brother as well as her then 87-year-old mother, Gladyce.

While her brother suffered the ravages of diabetes – blurred vision, headaches, operations on hands and feet, etc. – her mother, Gladyce suffered from signs of dementia and had several mini strokes over the years.  For both their safety and Joan’s peace of mind, she had purchased a condominium in the Sacramento, California area where Joan had grown up and paid for them both to live there together.

Meanwhile, Joan lived across the country with her home base on the East Coast where she was raising two sets of twins under the age of 10 with her second husband and playing “empty nest” mom to her three older daughters from her first marriage.  In addition, she had not slowed down since leaving “Good Morning America” in 1997, traveling the country as a spokesperson on healthy living, authoring several books, and managing a growing business focused on healthy living.

Joan was both a Sandwich Generation caregiver – one of the 24 million Americans caring for children and a parent simultaneously and thus, sandwiched between caregiving duties – and a long-distance caregiver.  More than 8 million caregivers care for a loved one long distance – whether they are two hours away or across the country as in Joan’s case.  This makes caregiving more difficult – you are not there every day to see the small things which can be warning signs that something is changing and your loved one needs more care.

Joan and her mother, Gladys

Joan and her mother, Gladys

The Sunrise, Sunset of Alzheimer’s 

Although she mourned her only brother’s passing, it was not his death that rocked Joan’s world.  It was the realization that her mother’s dementia was so much worse than even she knew.

“My mom had ‘sundowners,’ a typical symptom of dementia and Alzheimer’s where the person becomes irritated, irrational and sometimes violent as the sun is setting,” explained Joan.  She also showed signs of paranoia especially after Joan moved her mother into an assisted living facility.

“Mom was afraid to go downstairs and visit with the other residents, they frightened her and yet she could not tell us why,” said Joan.

Joan soon realized that she had been overlooking her mother’s real needs and issues. “It is easy to overlook things when you live far away from your loved one,” says Joan.  “They put on a happy face and they seem fine and you may see small things but you want them to be fine.”

Alzheimer’s disease, which affects more than 5 million Americans today, can also be a sneaky disease.  An older loved appears relatively healthy and fine physically but is suffering from dementia that can cause sudden mood shifts or other emotional problems, especially frightfulness and forgetfulness.  It is only through the activities of daily living that one sees how critical proper care becomes. The long-distance care Joan had ben providing her mom had given her blinders to her mom’s real needs.

Joan encountered what I call “Goldilocks Syndrome” trying out several facilities before finally finding the right environment for her mother’s health needs and happiness. After Gladyce suffered several falls breaking her foot, her rib, then hitting her head and needing staples did Joan realize a specialized care facility would be necessary.

The social worker at the hospital where Gladyce was treated for her falls put Joan in touch with a senior care facility advisor.  The advisor assigned to Joan assessed Gladyce’s needs and then took Joan and Gladyce on a tour of several facilities that she thought would work.  They settled upon a small residential care facility with just six residents in a large home setting.

Press Hat dreamstime_m_11320792 (2)Using Her Journalistic Instincts – Tracking Down Leads

When Joan’s brother passed away, it was left to Joan to decide if her mother could continue living independently with some personal care assistance from an outside agency or a professional.  In addition, Joan needed to go through all the paperwork for her mother that her brother had been handling.  Joan, her brother and her mother had been a threesome as Joan grew up since her father was tragically killed in a plane crash when Joan was only 14.

Faced with a mass of paperwork and a lot of missing documentation, Joan got down to doing what she does best – investigating.  As a journalist you have to be inquisitive and look for clues to the real story.  In Joan’s case she had to search through mountains of paperwork and become an amateur genealogist to be able to help her mother.  She could not access her mother’s bank account, she could not find a social security card or driver’s license, and she had nothing to go on except she knew her mother’s maiden name.

An elder law attorney that Joan had secured advised her to find her mother’s birth and marriage certificates.  This would be verification for the Social Security office to issue her mother a duplicate card since Joan could not find the original.

In addition, Joan would have to have her mother authorize her as a co-signer on the bank account and grant her access to health insurance and other critical information that has privacy protection.  Thank goodness in Joan’s case her mother was still lucid enough to authorize her daughter to help – in many caregiving situations the loved one can no longer provide that authorization and it becomes a costly and time-consuming legal burden for the caregiver to get this done.

“You think you know your parents but then something like this happens and you realize maybe you do not know as much as you should,” says Joan.  This is especially true when it comes to verifying records and making decisions on their behalf.

In retrospect, Joan says, “I wish I had the family meeting before the crisis in care happened but I am typical.  The crisis happened and all of a sudden you have to become an instant expert at so many issues around elder care.”

Joan’s advice to all caregivers, current and future, is to take a page from her long-running morning show career.

“Have the conversation, start the dialogue, do the interview with your loved one,” she advises.  “And, most importantly, don’t stop communicating – talk to your loved one as often as possible, talk to their doctor, ask questions, talk to the facility administrators and health care professionals – stay on it .  It is the most important tool you have – it keeps you connected to your loved one and to the essential care needs they have.”

Joan Lunden People Magazine Oct 2014Joan lost her mother in 2013 but is following in her energetic mother’s footsteps. Taking on a new role as a breast cancer survivor, Joan’s lifelong healthy eating habits now include a non-GMO diet. As the poster gal for 60 being the new 40, Joan says her caregiving experience has given her new insights into the message of “prepare for the worst and hope for the best.”  Her inspirational attitude is captured in a book she co-authored about caregiving stories, Chicken Soup for the Caregiver’s Soul.

 

 

©2015 Sherri Snelling

The Difference in Caring for Moms versus Dads

African American Family dreamstime_m_4832256 (2)The 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 my article for PBS Next Avenue about “The Difference in Caring for Moms versus Dads.”