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

First Lady Caregivers

First LadiesWe celebrate two great former Presidents on February 16 but Caregiving Club celebrates the First Ladies who have also served as a family caregiver. This month read the stories of Rosalynn Carter, Nancy Reagan, Hillary Clinton, Laura Bush and Michelle Obama.

First Lady Caregivers

White House dreamstime_m_13650075 (2)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.  But today I honor the First Ladies who have helped care for this nation and in turn have been caregivers for family members.

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.

Hillary Clinton dreamstime_m_18904593 (2)Hillary Clinton – Caregiving 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 which offered more services to support those family members 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.

 

Nancy Reagan cropNancy Reagan – The Loving, Long Good-bye to a Spouse with 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 Alzheimer’s disease.  In this 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.

As the caregivers of today’s more than five million Americans diagnosed with Alzheimer’s disease know, Nancy lived the last 10 years of her husband’s life known to dementia caregivers 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.

Since President Reagan’s passing, Nancy has become a passionate advocate for Alzheimer’s disease awareness and education and especially advocating for the research around embryonic stem cells that can hopefully lead to a cure.  She also speaks about her personal caregiving journey and the need to recognize caregivers as a crucial part of the care team around a loved one.

In the last few years, Nancy has needed the care of her family more than ever having suffered from several falls – one in which she broke her pelvis without realizing it until the persistent pain drove her to the doctor who finally diagnosed the fracture.  More than 2 million older Americans suffer from falls requiring emergency room care and every 29 minutes a senior dies at home from a fall according to the Centers for Disease Control and Prevention (CDC). 

Rosalynn Carter headshotRosalynn Carter – Caring for Parents On Both Ends of Her Life

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.  A long-time devoted and determined advocate for those Americans with mental health issues, Rosalynn Carter is also behind the founding of 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.

Mrs. Bush 41 and 43

Barbara BushLast holiday season, Barbara Bush was called into service as caregiver to her husband, former President George Herbert Walker Bush known as “Bush 41.”  Bush suffered from terrible bronchitis which prompted a hospital stay and time in the intensive care unit when his fever spiked.  Although age 88, Bush has been a vital senior, skydiving for a recent birthday and traveling the globe as a peace ambassador with former rival President Clinton.  Discharged in January, Barbara is stepping into that role that so many octogenarian spouses are:  caregiver. But it is a role she has played before for her child with a chronic illness. While the stress of the presidency has a tendency to prematurely age the men who have held office, 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.

 

Laura BushLaura 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 Bush who was running for governor of Texas, her father was diagnosed with Alzheimer’s disease.  While Laura 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 is 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.

42-21828752First Lady, First Daughter – Sandwich Generation Champion

Our current 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.

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 book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.


CastofCaregivers Cover FINAL

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PBS Next Avenue Articles

PBS Next Avenue together

Following are all of Sherri’s articles for PBS Next Avenue:

17 Essential Books for Caregivers

90-Year-Old Billionaire David Murdock Doles Out Advice

Alzheimer’s App Uses Singing to Boost Mood

Alzheimer’s Epidemic Hits Women Hardest

Are You a Caregiver or Just a Good Child? (Sherri Snelling quoted in article)

Can caregiver guilt be good for you?

Caregiver Tipping Points

Caregivers of 9/11 – Cancer and PTSD New Challenges for Survivors

Caring for Her Blind Husband Challenged Her Marriage

Casey Kasem’s Legacy for Caregivers

Dark Side of Caregiving – Elder Abuse News

Difference in Caring for Moms versus Dads

The Emmy Awards We’d Give – TV’s Best Caregivers (2012)

The Emmys We’d Award – TV’s Best Caregivers (2013)

Employers must do more to support working caregivers

Finding Affordable Home Care for Your Parents (Sherri Snelling quoted in article)

First U.S. Dementia Village

For Caregivers, New Tracking Technology Offers Peace of Mind

Fran Drescher on cancer and 3 tips for caregivers (PBS 2015)

Glen Campbell’s Farewell Tour

Healing Power of Pet Therapy

Help Your Parents Join the Aging in Place Revolution (Sherri Snelling quoted in article)

Holly Robinson Peete’s Most Challenging Role – Sandwich Generation Caregiver

How Online Volunteers Support Caregivers

How Strong is Your Living Will? (Sherri Snelling quoted in article)

How to Avoid the Goldilocks Syndrome

How to Care for Your Parent Without Losing Your Job (Sherri Snelling quoted in article)

How You Can Combat the Senior Hunger Crisis

Joan Lunden on challenges of guilt and caregiving

Kimberly Williams Paisley Chronicles Her Mother’s Dementia

Latest report shows rise in male caregivers

Meet the Hall of Fame Caregiver Who Changed the NFL

Moving Together to Prevent the Risk of Falls

New Report Highlights Stress of Long Distance Caregiving

Norman Lear – Longevity, Laughter, Love of America

The Osmond Family’s Greatest Act – Winning the Daily Battle Against MS

Patient Navigators – New Help for Caregivers

PBS Powerful Expose on Assisted Living (Sherri Snelling quoted in article)

Rise of Men as Caregivers

Robots vs. the Real Thing in Pet Therapy

Rosalynn Carter – A Pioneering Caregiving Advocate Says More Must be Done

Seth Rogen Getting Millennials to Care About Alzheimer’s

The Sibling Caregiver

Social Media Dangers for the Modern Caregiver

Suze Orman’s Lessons Learned on Long Term Care for Her Mom

Tax Rules for Caregivers

A Victory for Alzheimer’s Patients and Caregivers (Sherri Snelling quoted in article)

The Village Movement – Redefining Aging in Place

Virtual Reality Is A Caregiver’s Empathy Machine

Waltons reboot – multigenerational living is back!

Want to Live Longer?

What Lies Ahead for the Nation’s Caregivers?

What Parents of Wounded Veterans Need

What We Can Learn from Brittany Maynard’s Death

What’s Next in Caregiver Technology

What’s Your Caregiving IQ?

When the Old Care for Their Children

When Parents Face Driving Retirement – Alternative Senior Transportation

Why Caregivers Need to Plan for the Worst – Emergency Preparedness

Why Laughter is Crucial for Caregivers

Why You Need to Make Your End-of-Life Wishes Known

Why and When Denial is Good for Caregivers

Caring.com Caregiver Profiles

Caring dot com

Following are the caregiver profiles Sherri has contributed to Caring.com:

Debi Cacace – Staying Connected With Her Father-in-Law Through Technology

Diane McGunigle on Women, Caregiving and Heart Health

Dr. Sally Brooks –A Doctor, A Daughter, A Caregiver

First Lady Rosalynn Carter – The Caregiving Pioneer

The Health Risks of Being “The Good Daughter

Libby Hewes- A Veteran’s Caregiver Goes from Newlywed to Nurse

Rosalinda & Alain Babin – Boomer Parents Proud of Wounded Warrior Son

Sara Ballantine – The Magic of Caring for Her Dad

Sarah Abbott and Kate Stukenberg – Blondes vs. Brunettes in the Fight for Alzheimer’s

The Working Caregiver – A Culture of Care at Work Makes All the Difference

 

Happy Birthday to a Caregiving Pioneer – Rosalynn Carter

Photo: The Carter Center

Photo: The Carter Center

She said it first and she said it best:  “There are only four kinds of people in the world:  those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

As one of the pioneers behind a growing caregiving movement in this country, Mrs. Carter became the first public figure to truly champion the cause of those 65 million Americans today caring for loved ones who are older, chronically ill, disabled, have special needs or are challenged by mental illness.

I talked with former First Lady Rosalynn Carter about the strides made for caregivers over the last few decades and what her hope is for the future.  They also talked about her caregiving roles – providing comfort and care to multiple family members over the years.  As Mrs. Carter gets ready to celebrate her 86th birthday on August 18, Sherri asked her to share her wish list for caregivers in this country.

A Backwards Glance

“My work with caregiving grew out of my mental health work,” says Mrs. Carter. “I had seen so many families burdened with caregiving for those with mental health issues.  When we convened a meeting in the 1980s to discuss caregiving issues, it quickly spread from there.”  She had reached out to organizations such as the American Heart Association, the American Lung Association, the American Medical Association and other groups that could help both family caregivers and health care professionals.  Amazingly all these groups agreed that caregiving was critical to the health of the patient but no one had any focused caregiving programs.

That was then.  Over the last three decades, Mrs. Carter is encouraged by the public support for caregivers.  She points to essential government programs such as the National Family Caregiver Support Program, authorized as part of the Older Americans Act, and administered through the Administration on Aging, it provides grants to states to help caregivers keep loved ones at home as long as possible.  She also believes programs such as the Lifespan Respite Care Act are critical to helping caregivers with a huge issue identified back in those early 1980s meetings:  burn-out.  To avoid burn-out, caregivers today can find respite services, training and other information through the ARCH National Respite Network and Resource Center.

“Of course we always want more but it is wonderful to see how this issue [of caregiving] has become a major, major issue,” says Mrs. Carter.

She is also proud of the fact that the program she founded and which bears her name, the Rosalynn Carter Institute (RCI) for Caregiving at Georgia Southwestern State University is the “only university with a caregiving program.”  In talking with Dr. Leisa Easom, executive director of RCI, the Institute is focused on taking evidence-based research to understand caregiver needs and then translating that research into programs.  Since 1987, RCI has been a leading advocacy, education, research and service unit for caregivers at the university and beyond the campus.  Working with numerous national organizations and community-based services across the country, RCI recently launched a satellite program in Korea and will continue to expand its caregiving expertise and support internationally.

While Mrs. Carter is proud to have founded the first university-based caregiving program, she has only started.  Her hope is that the global aging crisis will encourage even more sectors, including government, academia and U.S. businesses, to understand the importance of focusing on the caregivers and the services and support they need.

Birthday Wishes for Caregivers

Mrs. Carter has several wishes for caregivers that she would like to see come true over the next several years.  They include caregiver education and support to deal with grief as well as guilt.  She feels coping with these twin demons can help caregivers on their path to self-care which is so critical for dealing with the overall long term care issues in this country.

“The first thing we focused on back in the 1980s was caring for the caregivers,” she recalls.  “I spoke at a caregiving event back then and audience members came up to me afterwards crying saying that this was the first time someone understood what they were going through.”  She also advises, “People don’t want to admit that they are caregivers, they feel it is just their responsibility to care for a mother or a grandmother,” says Mrs. Carter.  Beyond self-identifying as a caregiver she also believes, “They also have to recognize the need for help and be willing to receive help.”   She realizes this is easier said than done.  I asked her if she had identified herself as a caregiver through the years and she laughed, “No, I didn’t realize I was a caregiver until I got involved in this work.”

She also hopes for continued understanding and acceptance of those with mental health issues, with a move toward eliminating the stigma that surrounds these individuals and their family caregivers. While she believes there is more attention to issues such as bi-polar disorder, schizophrenia, Alzheimer’s disease and post-traumatic stress disorder (PTSD), we need to move beyond awareness to acceptance and she feels that we are not there yet.

The programs that support the participation that Dr. Easom and RCI had in Averting the Caregiving Crisis, a report issued this spring by several caregiving thought leader organizations that identifies six key caregiving strategies are also part of Mrs. Carter’s hope for the future of caregiving:  1) Educating the public; 2) Understanding needs through evidence-based research; 3) Translating that research into programs; 4) Leading policy change around long term care; 5) Investing in sustainability for programs; 6) Creating more leadership around caregiving through public and private partnerships.

Her passion and advocacy come from a personal place and a lifetime dedicated to understanding the challenges – emotional, physical and financial – that accompany caring for a loved one.  Rosalynn was only 12 years old when her father was diagnosed with terminal leukemia, a battle he lost just three months later.  As the eldest daughter, she helped care for her ailing father and after his death 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.  She relates how all of President Carter’s siblings succumbed to cancer and he also lost his mother to breast cancer.  Rosalynn helped care for several of these in-laws and also cared for her mother for many years until she passed in 2000 at age 94.  In 2002, she was called to care again for her younger brother who had a stroke.  He was living all alone in Ohio so he moved closer to Rosalynn in Plains, Georgia, so she could care for him.

“I have seen firsthand why it is important for families to have places to go to for help – it is so crucial.”

As Mrs. Carter gets ready to blow out the candles on her birthday cake, she is looking forward to the fly-fishing vacation with former President Carter he has promised her.  On August 18th we celebrate a true caregiving champion and let us wish that the spotlight Mrs. Carter has put on caregivers never dims.  Happy Birthday Mrs. Carter!

Celebrity Spotlight

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

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

Read all the celebrity interviews by clicking here.

The First Lady Caregivers

White House dreamstime_m_13650075 (2)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.  But today I honor the First Ladies who have helped care for this nation and in turn have been caregivers for family members.

 

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.

Hillary Clinton dreamstime_m_18904593 (2)Hillary Clinton – Caregiving 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 which offered more services to support those family members 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.

 

Nancy Reagan cropNancy Reagan – The Loving, Long Good-bye to a Spouse with 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 Alzheimer’s disease.  In this 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.

As the caregivers of today’s more than five million Americans diagnosed with Alzheimer’s disease know, Nancy lived the last 10 years of her husband’s life known to dementia caregivers 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.

Since President Reagan’s passing, Nancy has become a passionate advocate for Alzheimer’s disease awareness and education and especially advocating for the research around embryonic stem cells that can hopefully lead to a cure.  She also speaks about her personal caregiving journey and the need to recognize caregivers as a crucial part of the care team around a loved one.

In the last few years, Nancy has needed the care of her family more than ever having suffered from several falls – one in which she broke her pelvis without realizing it until the persistent pain drove her to the doctor who finally diagnosed the fracture.  More than 2 million older Americans suffer from falls requiring emergency room care and every 29 minutes a senior dies at home from a fall according to the Centers for Disease Control and Prevention (CDC). 

Rosalynn Carter headshotRosalynn Carter – Caring for Parents On Both Ends of Her Life

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.  A long-time devoted and determined advocate for those Americans with mental health issues, Rosalynn Carter is also behind the founding of 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.

Mrs. Bush 41 and 43

Barbara BushLast holiday season, Barbara Bush was called into service as caregiver to her husband, former President George Herbert Walker Bush known as “Bush 41.”  Bush suffered from terrible bronchitis which prompted a hospital stay and time in the intensive care unit when his fever spiked.  Although age 88, Bush has been a vital senior, skydiving for a recent birthday and traveling the globe as a peace ambassador with former rival President Clinton.  Discharged in January, Barbara is stepping into that role that so many octogenarian spouses are:  caregiver. But it is a role she has played before for her child with a chronic illness. While the stress of the presidency has a tendency to prematurely age the men who have held office, 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.

 

Laura BushLaura 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 Bush who was running for governor of Texas, her father was diagnosed with Alzheimer’s disease.  While Laura 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 is 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.

42-21828752First Lady, First Daughter – Sandwich Generation Champion

Our current 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.

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, published by Balboa Press and available now.

Celebrating First Lady Caregivers

Caregiver is a role we all play – even our First Ladies.  Read their stories in our Spotlight below – our special President’s Day blog.

Happy Birthday to Caregiving’s Pioneer – Rosalynn Carter

She said it first and she said it best:  “There are only four kinds of people in the world:  those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

As one of the pioneers behind a growing caregiving movement in this country, Mrs. Carter became the first public figure to truly champion the cause of those 65 million Americans today caring for loved ones who are older, chronically ill, disabled, have special needs or are challenged by mental illness.

Our caregiving contributor, Sherri Snelling, talked with former First Lady Rosalynn Carter about the strides made for caregivers over the last few decades and what her hope is for the future.  They also talked about her caregiving roles – providing comfort and care to multiple family members over the years.  As Mrs. Carter gets ready to celebrate her 85th birthday on August 18, Sherri asked her to share her wish list for caregivers in this country.

A Backwards Glance

“My work with caregiving grew out of my mental health work,” says Mrs. Carter. “I had seen so many families burdened with caregiving for those with mental health issues.  When we convened a meeting in the 1980s to discuss caregiving issues, it quickly spread from there.”  She had reached out to organizations such as the American Heart Association, the American Lung Association, the American Medical Association and other groups that could help both family caregivers and health care professionals.  Amazingly all these groups agreed that caregiving was critical to the health of the patient but no one had any focused caregiving programs.

That was then.  Over the last three decades, Mrs. Carter is encouraged by the public support for caregivers.  She points to essential government programs such as the National Family Caregiver Support Program, authorized as part of the Older Americans Act, and administered through the Administration on Aging, it provides grants to states to help caregivers keep loved ones at home as long as possible.  She also believes programs such as the Lifespan Respite Care Act are critical to helping caregivers with a huge issue identified back in those early 1980s meetings:  burn-out.  To avoid burn-out, caregivers today can find respite services, training and other information through the ARCH National Respite Network and Resource Center.

“Of course we always want more but it is wonderful to see how this issue [of caregiving] has become a major, major issue,” says Mrs. Carter.

She is also proud of the fact that the program she founded and which bears her name, the Rosalynn Carter Institute (RCI) for Caregiving at Georgia Southwestern State University is the “only university with a caregiving program.”  In talking with Dr. Leisa Easom, executive director of RCI, the Institute is focused on taking evidence-based research to understand caregiver needs and then translating that research into programs.  Since 1987, RCI has been a leading advocacy, education, research and service unit for caregivers at the university and beyond the campus.  Working with numerous national organizations and community-based services across the country, RCI recently launched a satellite program in Korea and will continue to expand its caregiving expertise and support internationally.

While Mrs. Carter is proud to have founded the first university-based caregiving program, she has only started.  Her hope is that the global aging crisis will encourage even more sectors, including government, academia and U.S. businesses, to understand the importance of focusing on the caregivers and the services and support they need.

Birthday Wishes for Caregivers

Mrs. Carter has several wishes for caregivers that she would like to see come true over the next several years.  They include caregiver education and support to deal with grief as well as guilt.  She feels coping with these twin demons can help caregivers on their path to self-care which is so critical for dealing with the overall long term care issues in this country.

“The first thing we focused on back in the 1980s was caring for the caregivers,” she recalls.  “I spoke at a caregiving event back then and audience members came up to me afterwards crying saying that this was the first time someone understood what they were going through.”  She also advises, “People don’t want to admit that they are caregivers, they feel it is just their responsibility to care for a mother or a grandmother,” says Mrs. Carter.  Beyond self-identifying as a caregiver she also believes, “They also have to recognize the need for help and be willing to receive help.”   She realizes this is easier said than done.  I asked her if she had identified herself as a caregiver through the years and she laughed, “No, I didn’t realize I was a caregiver until I got involved in this work.”

She also hopes for continued understanding and acceptance of those with mental health issues, with a move toward eliminating the stigma that surrounds these individuals and their family caregivers. While she believes there is more attention to issues such as bi-polar disorder, schizophrenia, Alzheimer’s disease and post-traumatic stress disorder (PTSD), we need to move beyond awareness to acceptance and she feels that we are not there yet.

The programs that support the participation that Dr. Easom and RCI had in Averting the Caregiving Crisis, a report issued this spring by several caregiving thought leader organizations that identifies six key caregiving strategies are also part of Mrs. Carter’s hope for the future of caregiving:  1) Educating the public; 2) Understanding needs through evidence-based research; 3) Translating that research into programs; 4) Leading policy change around long term care; 5) Investing in sustainability for programs; 6) Creating more leadership around caregiving through public and private partnerships.

Her passion and advocacy come from a personal place and a lifetime dedicated to understanding the challenges – emotional, physical and financial – that accompany caring for a loved one.  Rosalynn was only 12 years old when her father was diagnosed with terminal leukemia, a battle he lost just three months later.  As the eldest daughter, she helped care for her ailing father and after his death 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.  She relates how all of President Carter’s siblings succumbed to cancer and he also lost his mother to breast cancer.  Rosalynn helped care for several of these in-laws and also cared for her mother for many years until she passed in 2000 at age 94.  In 2002, she was called to care again for her younger brother who had a stroke.  He was living all alone in Ohio so he moved closer to Rosalynn in Plains, Georgia, so she could care for him.

“I have seen firsthand why it is important for families to have places to go to for help – it is so crucial.”

As Mrs. Carter gets ready to blow out the candles on her birthday cake, she is looking forward to the fly-fishing vacation with former President Carter he has promised her.  On August 18th we celebrate a true caregiving champion and let us wish that the spotlight Mrs. Carter has put on caregivers never dims.  Happy Birthday Mrs. Carter!

Honoring Our First Lady Caregivers

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.

But, this holiday, I am going to celebrate the women – three of our First Ladies who have led the crusade for caregivers.  Hillary Clinton, Nancy Reagan and Rosalynn Carter are passionate advocates for our nation’s 65 million caregivers because they have taken the caregiving journey themselves.

Photo: Numinaimages/Dreamstime

Hillary Clinton – The Congressional Caregiving Champion

It was a poignant moment when I read last November 1 that Hillary Clinton had lost her 92-year-old mother, Dorothy Rodham.  Poignant for two reasons:

1)      November 1 marks the beginning of National Family Caregiver Month

2)      Clinton had 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 for those family members who are providing 80 percent of the long-term care to keep a loved one living at home as long as possible.

Her mother’s illness, a topic that was kept private from the invasive world of 24/7 news media, made Clinton one of those caregivers she had championed so often in Congress.  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.

Photo: Richard Guinon/Dreamstime

Nancy Reagan – The Loving, Long Good-bye to a Spouse with 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 Alzheimer’s disease.  In this letter, President Reagan not only helped shine his celebrity spotlight on a disease which 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, he did not even recognize her.

As the caregivers of today’s more than five million Americans diagnosed with Alzheimer’s disease know, Nancy lived the last 10 years of her husband’s life known to dementia caregivers 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.

Since President Reagan’s passing, Nancy has become a passionate advocate for Alzheimer’s disease awareness and education and especially advocating for the research around embryonic stem cells that can hopefully lead to a cure.  She also speaks about her personal caregiving journey and the need to recognize caregivers as a crucial part of the “care team” around a loved one.

Rosalynn Carter – Caring for Parents On Both Ends of Her Life

Photo: U.S. Govt.

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.  A long-time devoted and determined advocate for those Americans with mental health issues, Rosalynn Carter is also behind the founding of 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.

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