January 21 – National Hugs Day!

Part of our 2018 wishes for all caregivers – we celebrate National Hugs Day on January 21!  Scientists tell us that 8 hugs a day help protect our brains and send a powerful emotional and healthful message to caregivers that you care. Read our CEO Sherri Snelling’s blog here on the healing power of hugs:

Got Hugs? The Healing Power of a Good Embrace

Got Hugs? The Healing Power of a Good Embrace

As we celebrate National Hugs Day on January 21, this simple gesture of compassion or celebration is actually a prescription for brain health and caregiver wellness.

Hugging is an intimate gesture to bring two people together. The person receiving the hug gets a silent message from the hugger, “You matter to me, you are not alone, I’m here.” The emotional impact of this small act can make all the difference in the world to a family caregiver who is experiencing sadness, depression, fear and anxiety.

But scientists have established beyond the emotional uplift, there is a positive physical impact as well. When hugged, we receive a jolt of oxytocin – known as the “love or cuddle” hormone. This hormonal surge helps us bond with the person we are hugging. There is a transfer of positive energy from one human to the other and we feel safer and supported.

Taking the science even further, receiving a hug can boost the immune system, calm our body and regulate blood pressure, reduce inflammation, bring balance back to our nervous system and make us more patient. In addition to the oxytocin hormone for a feeling of happiness and bonding, hugs also result in a dopamine release in our brains – the “feel good” hormone – which can relieve stress and tension as well as motiviate us and boost our self-esteem.

In research done in a NICU unit of a hospital, newborns were separated into two groups. The first group was cuddled and held in a warm snuggly embrace a few times a day. The other group was well-nourished and cared for but not held and hugged. After just a few weeks, researchers observed the first group thrived with higher weight gains, cooing noises and better sleep. The second group, which did not get their daily hugs, had lower weights, cried more often, were restless during sleep periods and appeared more agitated.

Essentially, hugs are necessary for our survival. Without them, we are living a slow death. Virginia Satir, American psychologist, advises, “We need 4 hugs a day for survival. We need 8 hugs a day for maintenance. We need 12 hugs a day for growth.”

Hugs Protect Our Brains

Paul Zak, a neuroeconomist known as “Dr. Love” for his research into oxytocin and neuro response, prescribes eight hugs a day to receive the adequate amount of oxytocin and other hormonal release that provide a neuroprotective effect for brain health.

In addition to human to human contact, we can receive the same plethora of health benefits from hugging a pet. It is one of the reasons why pet therapy is so powerful and impactful in our senior population even helping to calm agitated or wandering dementia patients.

When I gave the keynote speech at the National Caregiver Expo in Jacksonville, Florida a couple of years ago, I spoke about the healing power of hugs. Spontaneously, the audience turned to each other and gave their fellow audience member a hug. Someone came up on stage to embrace me and I can’t explain the surge of positive emotion and feeling so good that I was there!

The best part of hugging is that it is a non-pharmacological, non-invasive, universal expression of love and care.  And it’s the gift that gives back because we cannot hug someone without getting the same reaction we provide. Hugs are where both parties benefit in the emotional and physical healthy feelings.

 

 

How to Give a Good Hug

  1. Hug someone for at least 20 seconds – don’t be wimpy or weak about it – make it a good bear hug to show how much you care.
  2. Provide the “Heart to Heart Hug”: Raise your left arm up to wrap it over the upper right shoulder of your hugging partner, leaving your right arm low to wrap around his or her midsection just below his or her left arm.
  3. Include your pets in your daily prescription of 8 Hugs a Day – all hugs count!

 

 

If you are not sure if someone is a hugger, a nice pat on the back or rub on the hand or arm will let you know if you should go for it. If not, the touch is still a nice gesture of support and not invading the recipient’s space.

 

 

 

 

 

 

Watch this video from the Cleveland Clinic on how hugs improve our health

 

You can read more about hugs, happiness and hygge in Sherri Snelling’s book, A Cast of Caregivers – Celebritiy Stories to Help You Prepare to Care.

 

Aging Dreamers – How Caregivers Can Help Loved Ones Achieve Their End-of-Life Wishes

It’s been more than 50 years since Martin Luther King Jr. gave his famous “I Have a Dream” speech on the steps of the Lincoln Memorial in Washington, D.C.  As we honor Dr. King’s birthday today with the “MLK Day of Service” family caregivers can perform two acts of service for their loved ones:

  • Ensure your loved one’s end-of-life wishes are in order (including Living Wills, Health Care Directives, Durable Power of Attorney, DNR, etc.).
  • Help your loved one fulfill something on their bucket list.

 

Following are two great ways for caregivers and their loved ones to achieve both of these dreams.

The Five Wishes

When it comes to end-of-life wishes – especially the legally binding paperwork so essential to ensure families are not pulled apart when they need to come together – it is hard to start the conversation. There is a tool available that is not only affordable, valuable and legal but helpful in beginning the dialogue about end-of-life. It is called The Five Wishes.

In 1997, Jim Towey, who had served as Mother Teresa of Calcutta’s friend, volunteer AIDS worker and legal counselor, created a nonprofit organization, Aging with Dignity. At the core of the organization was a document Towey created that was in his words a “living will with a heart and a soul.”

Essentially, the document asks five questions that cover medical, personal, emotional and spiritual needs to help you communicate how you want to be treated if you are too ill to speak for yourself:

  1. Which person you want to make health care decisions for you when you can’t make them.
  2. The kind of medical treatment you want or don’t want.
  3. How comfortable you want to be.
  4. How you want people to treat you.
  5. What you want your loved ones to know.

Watch our Me Time Monday video on How to Have the C-A-R-E Conversation:

To date, the $5 document (either downloadable to your computer or mailed to you) has been filled out by 18 million people worldwide and has been translated into 26 languages and Braille. It is used in all 50 states and meets the legal requirements for an Advance Directive in 42 states (in the remaining eight states you can attach The Five Wishes to the forms that state requires).

Because The Five Wishes has interesting origins with the principles of Mother Teresa infusing its purpose, this can be the conversation starter with your family.  While the emphasis is on aging baby boomers to ensure these wishes are in place, having your wishes written, legally binding and communicated to family is smart for everyone.

It is the legacy of the Terri Schiavo case that shows us the agony and antagonism that can happen to tear families apart when someone’s end-of-life care is unknown.  Schiavo was only 27 when she was put on a ventilator and feeding tube after cardiac arrest left her brain dead.  She lay in a vegetative state for 14 more years while her husband battled her parents over whether or not to keep her alive on machines.  If she had a Living Will or a Five Wishes document, there never would have been a battle.

Read the article on Casey Kasem’s legacy in showing why families need to discuss end-of-life care

The reality is if you do not have the conversation, family members can be confused and conflicted which can lead to emotional exchanges you do not want.  Dying is not a choice but how the end will be is.  We owe it to our families to share those wishes.  Your legal wishes may be written down but now is the time to start talking.

Read the article on the late Brittany Maynard and the “Death With Dignity” Movement

 

 

The Dream Foundation

When it comes to dreams, we all have our bucket list.

However, if you are battling a terminal illness, that bucket list seems even more precious but perhaps more elusive. Pain, immobility and money issues can dash these dreams and many give up their joy so they can focus their efforts on surviving.  Finding those moments of peace, reconciliation, validation and pleasure are part of life – no matter whether we are at the beginning, middle or end of our days.

One organization understands how important this is and grants real-life bucket list wishes to help caregivers help their loved ones achieve these end-of-life dreams.  Appropriately, it is called The Dream Foundation.

In 1993, Thomas Rollerson wanted to give his dying partner one last dream:  to go to the movies and see Mrs. Doubtfire starring his favorite actor, Robin Williams.  Seemingly a simple request, they set out for the movie theater with water bottles to keep his loved one hydrated, a critical tool in abating the pain of his illness.  The theater asked the gentlemen to leave because you could not bring your own water into the theater. Upset but not undaunted, Rollerson was dedicated to helping his loved one see a last movie. He called organizations dedicated to childhood dreams for terminal patients such as Make-A-Wish and the Starlight Foundation.  All these organizations limited their help to children only and Rollerson was amazed to find no group granted adult wishes.

Ultimately, Rollerson contacted the movie studio.  Twentieth Century Fox, which was behind Mrs. Doubtfire. He was astounded yet grateful when they provided a copy of the film (since the movie was still in theaters it was not yet in video stores).  This experience galvanized Rollerson to help other caregivers fulfill the dreams of the adult loved one who has last wishes. Thus, The Dream Foundation was founded in 1994.

To date, The Dream Foundation has fulfilled thousands of wishes for adults battling terminal illnesses. Rollerson is proud of the foundation’s success – one of the few and longest-operating nonprofit organizations to grant wishes nationwide for terminally ill adults and to not limit the wishes to those with certain diseases (for instance there are other groups who grant wishes for adult cancer patients).

“I had a network of contacts in the Hollywood and film community and I started reaching out to see how others could help and it grew from there,” says Rollerson.

As opposed to the over-the-top wishes we watch Jack Nicholson and Morgan Freeman enjoy in the movie, The Bucket List (such as an African safari, dining in Paris and riding motorcycles along the Great Wall of China), Rollerson says his favorite wishes granted are the simple ones.

Watch the Me Time Monday video on End-of-Life Wishes:

The Dream Foundation hosted a 104-year-old’s birthday party and invited the dream recipient’s brother whom he had not seen in 40 years.  Another woman had never stayed in a first- class hotel so the foundation gave her a weekend stay at a five-star resort. A 40-year-old man with lung cancer was granted a last wish of a fly fishing trip with his young sons and yet another dream recipient was given a state-of-the-art hearing aid “so he could hear what his grandchildren were saying to him.”

“It’s the simple joys in life we take for granted that become so important as we face ‘the end’,” says Rollerson.  “I learn from each dream we’ve given and it has become a gift to me to give these dreams.”

 

Note:  Read more about end-of-life issues in A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care by Sherri Snelling.

 

©2018 Sherri Snelling

 

A Year of Caregiver Hugs, Hygge & Happiness!

 

Our wishes every year are for caregivers to find the balance they feel they may need in caring for their loved one and caring for themselves.

This year we’re sending caregivers more hugs (eight hugs a day have proven to be neuroprotective), more hygge (the trend of 2017 continues with caregiver coziness tips) and more happiness (scientific studies have shown that people who are the healthiest and live longer have quality-time based relationships.)

It’s nice to know that caregiver health is not all about good nutrition and exercise (although they are still important!). Instead, there are simple but impactful avenues to achieve caregiver self-care and we’ll be blogging about this all year.

Read more:

You can also read these articles from our CEO Sherri Snelling:

Why Laughter is Crucial for Caregivers  (originally published on PBS Next Avenue)

Caregiving Is A Small World After All (originally published on Huffington Post)

Watch more:

You can also watch our Me Time Monday video for more tips on finding caregiver happiness and avoiding caregiver burn-out:

 

Kimberly Williams Paisley – Long Distance Lullaby for a Mom with Dementia

We all know the talented actress, Kimberly Williams Paisley, mostly from her fresh-faced, “all-American girl” role in the Father of the Bride movies. We also know her as the lucky real-life bride to country crooner and music star, Brad Paisley.

But it wasn’t until 2016 when Kim wrote her poignant memoir about becoming a dementia caregiver for her mother that we added her to the growing list of Sandwich Generation caregivers.

 

Our CEO, Sherri Snelling, interviewed Kim about her book, Where the Light Gets In – Losing My Mother Only to Find Her Again, that describes her challenges with a mom diagnosed with primary progressive aphasia, a type of dementia. Kim tells Sherri about creating the care team around her mom with her father, sister and brother, her guilt trip and how she traveled that road that all caregivers know so well and how her loving husband used a combination of hugs and humor to keep his wife’s spirits lifted even on those darkest days.

Click here to read Sherri’s interview with Kim here for PBS Next Avenue

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.”

hrp-with-dad-son

 

 

 

January is Financial Wellness Month

 

When we talk about wellness, we typically mean physical and mental health and happiness. However, there is another type of wellness that impacts caregivers and it has to do with financial wellness.

January is Financial Wellness Month and Caregiving Club focuses on how to help caregivers avoid what we call the “Caregiving Cost Drain.” A study conducted by the National Alliance for Caregiving and Evercare found more than half of all caregivers spend on average 10 percent of their annual income on care-related costs for their loved one – $400 more than the average American spends annually on entertainment and health care combined. Last year’s study by Merrill Lynch and Agewave, showed that 92 percent of all caregivers are also “financial caregivers.”

A great resource for caregivers who want to plan ahead, Genworth’s annual “Cost of Care” survey shows state-by-state costs for long-term care skilled nursing facilities, assisted living, dementia care, adult day care and in-home care.

Read more:

For more reading, check out our CEO Sherri Snelling’s articles and interviews below:

What financial guru Suze Orman learned caring for her mother (originally published on Forbes.com)

How to Avoid the Goldilocks Syndrome  (originally published on Forbes.com)

How to avoid the caregiving wallet drain (originally published for USA Today)

Tax Rules for Caregivers (originally published on PBS Next Avenue)

Watch more – Me Time Monday:

In addition, you can watch our Me Time Monday videos on caregiving costs and how to start the caregiving conversation with your loved one so you know what costs you might be facing.

 

 

 

April 10 – National Sibling Day

 

 

April 10 is National Sibling Day. When it comes to caring for Mom and Dad, siblings can either form a strong care team or can be the cause of conflict. Understanding each sibling’s role and having the family caregiving conversation earlier rather than later can help make the caregiver journey a smooth ride for all family members.

There is another side to siblings and caregiving: a study found that 18 percent of those caring for someone over age 75 were siblings caring for siblings. And, caring for young adults with disabilities or chronic conditions tend to be managed by siblings and are longer-term and more intensive.

Read our articles from CEO Sherri Snelling about siblings and caregiving:

The Sibling Caregiveroriginally published on PBS Next Avenue

Also, read Kimberly Williams-Paisley’s new book, Where the Light Gets In – Losing My Mother Only to Find Her Again, about how she, her father and her siblings formed a cohesive care team for her mom with dementia

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.”