Let the Caregiver Movement Begin with the Caregiver Bill of Rights

As 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 percentof 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 had our first 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 LGBTQ 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.

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.

More 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 losemyself 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.

  2. 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.

  3. 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.

  4. 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.

  5. 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. According to AARP, as of today 29 states have passed into law the CARE Act which requires health care providers to include the family caregiver information in a patient’s clinical chart, provide timely notification on discharge and help with family caregiver training needs to ensure quality of care for older patients at home.

  6. 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.

  7. 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.

  8. 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.

  9. 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.

  10. 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.

 

©2017 Sherri Snelling

 

July – National Sandwich Generation Month

 

Pew Research found that more Gen Xers are “Sandwich Generation” caregivers than baby boomers and a recent AARP report uncovered a growing number of caregivers who are Millennials. When it comes to the juggling act known as caregiving – especially for those Sandwich Generation members who care for children and older parents – how do you not drop the ball that says “Me?”

Our CEO Sherri Snelling offers insights, tips and other helpful information for those in the Sandwich Generation:

9 Cost-Free Ways to Find Respite and Get a Caregiver Break (originally published on PBS Next Avenue)

7 Tips to Avoid Sandwich Generation Burn-out (originally published in USA Today)

Sandwich Generation Juggling Act (originally published in Forbes)

Difference in Caring for Moms versus Dads (originally published on PBS Next Avenue.org)

How to Manage the Sandwich Generation Juggling Act – 8 Childish Things Caregivers Should Do (originally published in Huffington Post)

Mars vs. Venus On Caregiver Stress (originally published on Huffington Post)

You can also watch our Me Time Monday TM video on “Sandwich Generation Tips” and “Avoiding Caregiver Burn-Out” – see below:

 

 

Tips on Avoiding Caregiver Burn-out:

 

 

 

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.

Celebrity Spotlight – Celebrating Sandwich Generation Caregivers

 

More than 24 million Americans are caught in the middle called the “Sandwich Generation” who are caring for two generations simultaneously: children and older parents.

July marks National Sandwich Generation Month where our CEO Sherri Snelling has interviewed famous Sandwich Generation caregivers  who share their caregiving journeys and their tips on how to balance family, career and caregiving without losing focus on caring for yourself.

Read Sherri’s interviews with these Sandwich Generation caregivers:

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

Kimberly Williams-Paisley – Finding Her Mother Again

Brooke Shields – Endless Love in Caring for Her Mom

Joan Lunden – Coast to Coast Caregiving

 

 

 

 

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

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

Caregiver Tipping Points

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)

For Caregivers, New Tracking Technology Offers Peace of Mind

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

Meet the Hall of Fame Caregiver Who Changed the NFL

New Report Highlights Stress of Long Distance Caregiving

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

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

The Sibling Caregiver

Social Media Dangers for the Modern Caregiver

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

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

The Village Movement – Redefining Aging in Place

What Lies Ahead for the Nation’s Caregivers?

What Obama’s Re-election Means for Caregivers

What Parents of Wounded Veterans Need

What’s Next in Caregiver Technology

What’s Your Caregiving IQ?

When Parents Face Driving Retirement – Alternative Senior Transportation

Where do the Candidates Stand on Caregiving?

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

 

Examiner Articles

examiner_LogoFollowing are Sherri’s articles for Examiner.com:

7 Magnificent Ways the Sandwich Generation Can Avoid Burn-out

12 Tips to Help Prevent Parents from Falling

Caregiving Matchmakers – How to Find “The One” for In-Home Care

Glenn Close on Mental Illness Awareness

Heroes on the Homefront – Caring for a Veteran

How Dogs Help Those with Dementia

How Friendships Help Caregivers Cope

How to Prepare for Disasters When Older Parents Live Far Away

Southern California Hosts World’s Top Minds on Dementia Care

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

 

12 Tips to Help Prevent Parents from Falling

Falling Leaves dreamstime_11646793 (2)September 22 is the first official day of fall as well as National Falls Risk Prevention Day. It’s a great time for the 44 million caregivers of those over age 50 to brush up on tips to help prevent parents from falling.  Check out Sherri Snelling’s article for Examiner.com on seniors and falls prevention.

 

Mars vs. Venus on Caregiver Stress

Bulldog Miffed Spouse dreamstime_m_7663328 (2)Are men and women different when it comes to dealing with the stress of caring for an older parent?  Read Sherri Snelling’s article for Huff Post 50 on how men and women can learn from each other in managing the stress expectations of caregiving.

Rizzoli & Isles Creator Campaigns to Solve the Mystery of Alzheimer’s

Rizzoli and IslesYou may not immediately recognize her name, unless you are one of the millions of readers worldwide who have made Tess Gerritsen’s novels about female buddy crime solvers, detective Jane Rizzoli and chief medical examiner Dr. Maura Isles of the Boston police department, international best sellers and a top-rated TV drama.

When I spoke to Tess last week, it is not the fourth season premiere of Rizzoli & Isles on TNT or her latest novel, Last to Die, which is on her mind. It is the prevalence of Alzheimer’s disease (AD) and her new philanthropic campaign, which kicks off this month and ends on July 23rd offering donors an entertaining plot twist, that is top-of-mind for this former physician turned award-winning author who also happened to be a Sandwich Generation caregiver.

Appropriately named, Tess Gerritsen’s War on Alzheimer’s, the campaign asks for $5 donations in exchange for a chance to win prizes including naming one of the characters in the new Rizzoli and Isles medical and crime thriller novel she is currently working on to be published next year.  Gerritsen has pledged to match all donations up to $25,000 of which 100 percent of the funds raised will benefit the Scripps Research Institute in La Jolla, California – one of the largest independent nonprofit organizations for biomedical research with a leading four-star rating from Charity Navigator.

Author Tess Gerritsen

Author Tess Gerritsen

It was in the early ‘90s that Gerritsen felt the full-blown drama of Alzheimer’s in her family.  Her father was working for a large defense contractor in San Diego, California but was experiencing trouble with math and numbers that had been his forte throughout his career. Simultaneously, he spent nights as a popular chef in a family-run restaurant which Gerritsen explained as the “typical Chinese immigrant mentality of working two jobs to care for your family.” When his performance in his daytime defense job became unmanageable, he was let go and focused on his passion for cooking.

“My dad’s cooking was magic in the kitchen,” remembers Gerritsen.  “But eventually over the years his personality changed and his ability to remember recipes failed.  He became paranoid and thought people were stealing from him when often he was just misplacing things.”

He was officially diagnosed with Alzheimer’s disease in his mid 60s which Gerritsen says, “is so young” given the statistics for AD.  Early on-set or younger on-set Alzheimer’s accounts for approximately 5 percent of all Alzheimer’s patients – about 200,000 Americans who are in their 40s, 50s and 60s – whereas one in every two Americans will develop dementia after age 85.

Gerritsen, who resides with her husband and children in Maine, became one of the eight million long-distance caregivers for her divorced dad yet she credits her aunt, her father’s sister, with managing his daily care. Both women consoled each other as the father and brother they loved eventually became unable to speak and lost many of the joys in life, such as cooking and even eating.

“It really hit me when I lost my dad in 2003 how impactful this disease can be,” states Gerritsen.  As I learned more, including one in every three seniors will die with Alzheimer’s disease, I decided we need to solve the mystery of treating this disease before it overtakes us.”

Gerritsen is particularly troubled by the lack of funding through the National Institutes of Health (NIH) where annual budgets authorized by Congress for Alzheimer’s, which now ranks #6 among diseases on the top 10 list of causes of death in the U.S. , is less than 1/10th  the spending on other health issues such as heart disease, cancer and AIDS.

“Alzheimer’s is literally killing us and the only way to fight this ‘crime’ is through a groundswell of people who continue to raise their voices and funds to ensure it gets the attention it deserves,” says Gerritsen with the passion evident in her voice.

Gerritsen created her famous characters, Rizzoli and Isles, as two women with very different backgrounds and lifestyles who work together toward a common goal – solving crime.  She believes pop culture has a place in capturing attention for social causes and her Alzheimer’s campaign is her contribution to have different people work together to help eradicate a known killer.

Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, blends pop culture with caregiving expert advice, information, resources and self-care tips.

Emergency Preparedness for Your Older Loved One

tornadoDisaster season is here – with the second tornado to rip through Oklahoma in the last few days, disaster prep should be top of mind for caregivers. Read Sherri’s emergency preparedness article for PBS/Next Avenue about ensuring your loved one’s safety by having a family disaster plan in place.

Men As Caregivers

More than a “few good men” – fathers, sons, husbands, brothers, uncles now represent 45% of the 65 million caregivers.  Read Sherri’s PBS Next Avenue article about how men cope with caregiving and her blog about the famous men of caregiving.

 

 

Alzheimer’s Prevention Initiative

Help us reach 10,000 registrations by May 31 – it’s FREE.  Sign up at the Alzheimer’s Prevention Initiative, an international collaboration to find ways to prevent the Alzheimer’s disease that affects 36 million worldwide.  It’s about ADVOCACY. It’s about ACTION. It’s about ending ALZHEIMER’S in our lifetime.

Alzheimers Prevention Initiative logo