Celebrity Spotlight – How A Super Bowl Wife Changed the NFL for Aging Players

 

While the Philadelphia Eagles emerged victorious in yesterday’s Super Bowl match-up – the first in the franchise’s history – there’s another first the NFL has experienced in recent years. Sylvia Mackey, fearless wife of ‘60s and ‘70s Super Bowl hero, John Mackey, lobbied the NFL to adopt a long-term care assistance program for retired players who suffered with Alzheimer’s disease, Parkinson’s and ALS.  Called the “88 Plan” in honor of the jersey number of her late husband who died with frontotemporal dementia, Sylvia’s story is one of courage, humor and most of all advocating for the one you love.

 

 

 

Read our CEO Sherri Snelling’s interview for PBS Next Avenue with Sylvia Mackey

You can also read an extended version of Sylvia’s story in Sherri’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care

 

 

 

 

 

 

Watch more:

We also offer our Me Time Monday video that provide insights into the costs of caregiving to help you avoid what we call the “caregiving cost drain”

 

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

 

2018 is Year of the Dog

At Caregiving Club, we are avid pet lovers and believe in the power of pet therapy. Most of us here are dog owners which is why we are thrilled that 2018 is the “Year of the Dog” in the Chinese calendar.

All year long we’ll offer various stories, interviews and articles on how dogs improve our health as caregivers (lower blood pressure and get us moving) as well as calm and comfort those with Alzheimer’s, autism, Parkinson’s disease and other chronic illnesses. We also offer insights into the world of both real pets and their robotic counterparts.

Read more:

For more on our furry friends, read our CEO Sherri Snelling’s articles below:

Healing Power of Pet Therapy (originally posted on PBS Next Avenue)

New study on dogs helping dementia patients

Pets as the prescription for senior wellness

Snoopy to the rescue – pet therapy helps caregivers

Snoopy to the rescue – pet therapy helps caregivers

Robots vs. the Real Thing in Pet Therapy (originally posted on PBS Next Avenue)

Watch more – Me Time Monday:

Don’t miss our Me Time Monday video on pet therapy!

 

USA Today articles

How to Avoid the Caregiving Cost Drain

7 Tips to Beat Caregiver Burn-out

Silver Surfers – Aging and Technology

Paying it Forward – Volunteerism Among Caregivers

How to Have the CARE Conversation

On Demand Caregiver Help

Caregiver Weight Gain Could Be Connected to Breast Cancer Risk

It has long been suspected weight gain is a slippery slope to breast cancer risk.  Now studies are not only supporting this claim but also showing weight loss – even just 10 percent of total body weight – may also help prevent breast cancer.  If you are one of the 65 million Americans caring for a loved one, studies also show weight management becomes a big challenge which can put caregivers at even greater risk for developing breast cancer.

Most Americans gain only 1-2 pounds a year since college age, which doesn’t seem like anything to get too upset about until you do the math.  After 30 years, when you are in your 50s and at menopausal age and possibly caregiving for an older parent or ill spouse, this accumulated weight gain can be 30-60 pounds.  Not only will this increase your Body Mass Index (BMI) but it also puts you at risk for breast cancer and a host of other health issues including diabetes and heart disease.  Researchers have long believed weight gain, accumulation of excess body fat, can fuel estrogen levels which have been linked to breast cancer tumors in postmenopausal women.

A National Cancer Institute (NCI) study of 72,000 women found a steady weight gain over years can double the risk of breast cancer versus those women who maintained a steady weight all those years.  In fact, women in the study who started with higher BMI measurements, considered at an early age to be overweight or even obese, but maintained their higher weight over the years, did not show the increased risk in developing breast cancer.

In a separate study published in 2012 by researchers from the Fred Hutchinson Cancer Research Center in Seattle, Washington, researchers found for the first time weight loss directly lowers hormones linked to breast cancer.  By slowly losing weight through diet and exercise, you can lower the amount of these hormones circulating through the body, which can result in a decreased risk of developing breast cancer.

Maintaining your college weight is tough for anyone – 57 percent of the NCI study participants failed to keep their college figures.  Metabolism slows and childbirth weight gains may never completely come off (just ask Jessica Simpson how tough it was), work life may cause increased stress that triggers snacking and late hours or travel are challenges to a consistent fitness routine. Researchers are calling this busy life syndrome.

For caregivers, the added stress and time dedicated to caring for an older loved one takes over – fast food instead of good nutrition, lack of gym time and restless nights with fewer hours of sleep – are all caregiver health risks.  In fact, a Commonwealth Study found caregivers are twice as likely to develop chronic illness earlier in life – often attributed to increased and prolonged stress.

While some pounds may have crept on, Dr. Anne McTiernan who led the Fred Hutchinson study believes just 10 percent weight loss can have major impact and reduced breast cancer risk.  Other researchers support the findings including one of the world’s leading epidemiologists, Dr. Walter Willett of Harvard University.  He told ABC News, “Weight loss by postmenopausal women is one of the best ways to reduce risk of breast cancer.” Willett also mentions a study showing women who lost a moderate amount of weight had a 60 percent lower risk of breast cancer.

Calculate Your BMI

Both men and women throughout their lives should have a BMI measurement of 18.5 – 24.9.

 

 

 

Here is how to calculate yours:

  1. Take your weight
  2. Divide it by your height in inches
  3. Divide this new number by your height in inches again (yes, a second time)
  4. Multiply the new number x 703

Prescription for Healthy Weight – 5 Things Caregivers Can Do to Reduce Breast Cancer Risk

  1. Get your shuteye.

In a National Alliance for Caregiving (NAC) study, 87 percent of caregivers felt they did not get enough sleep and cited insomnia as a side effect of caregiving. Most experts advise at least 7-8 hours of restorative, uninterrupted sleep.  One Australian research study found less than five hours of sleep a night can be equal to .05 blood alcohol level and another study found just 5.5 hours or less of sleep a night can translate into a 12-pound weight gain over one year.

 

  1. Cut back on cookies and turn to healthy snacks. 

Because our metabolism slows as we age, most experts agree you should decrease the amount of calories you eat by 10 percent every decade.  You can also increase your intake of super foods to give you energy and which are loaded with anti-oxidant cancer-fighting ingredients. WebMD encourages you to swap out crackers for almonds, replace red meat with salmon, eat more blueberries than blueberry muffins and 2 oz. of chocolate a day is okay – as long as its 70 percent cocoa – it will decrease your cholesterol levels by 10 percent!

 

  1. Get physical. 

According to Susan G. Komen for the Cure, regular exercise reduces your breast cancer risk by 10 to 20 percent.  An added benefit is physical activity boosts the body’s immune system which can help slow or kill the growth of cancer cells. Take the stairs at work, walk around the block in the morning or at night – just 30 minutes a day – which can be broken down into three 10-minute cardio, heart-pumping sessions – will do.

 

  1. Sobriety Test.

A NAC study found 10 percent of caregivers use alcohol to cope with their stress but drinking more than one glass of alcohol per day increases your breast cancer risk by seven percent.  If you have 2-3 glasses of alcohol per day, your risk increases by 20 percent according to Susan G. Komen for the Cure.

 

 

 

  1. De-stress

Stress is the No. 1 complaint for caregivers.  But stress releases a hormone called cortisol which can lead to belly fat – the worst kind of fat to have.  Finding ways to de-stress whether it is meditation, breathing exercises, yoga or finding outlets to let off steam such as support groups or calling a friend who will let you vent will keep you healthier in body, mind and spirit so you can continue to care for your loved one and for yourself.

 

©2017 Sherri Snelling

Glenn Close Wants to Change Your Mind About Mental Illness

All caregiving can be exhausting, frustrating, overwhelming and stressful but for the caregivers of those with a mental health issue the societal stigma you face creates additional challenges.

According to the National Alliance of Mental Illness (NAMI), 1 in 4 adults in the U.S. has a diagnosable mental disorder and the average age is 14 for the on-set of mental illness.  NAMI is leading the national awareness campaign – the National Mental Illness Awareness Week is October 6-12 – first established by the U.S. Congress in 1990. The campaign includes National Depression Screening Day on October 10.

Shining a Spotlight on Mental Illness

Oscar-nominated and Emmy and Tony Award-winning actress Glenn Close wants to help lift the veil of mental illness to reveal the myths and eliminate the shame associated with bi-polar disorder, schizophrenia, post traumatic stress disorder (PTSD) and other mental health issues through a national public service campaign.

Glenn has become a champion who is shedding light on the dark world of bi-polar disorder and schizophrenia which affects her sister and her nephew respectively.  Appearing on the TV morning show, Good Morning America, Glenn said, “I believe we need to be having discussions around mental illness and talk as openly as we do about other diseases such as cancer or diabetes.”

Starring alongside her sister, Glenn launched a public service announcement (PSA) campaign on mental health issues created by BringChange2Mind, the nonprofit organization Glenn helped found to eliminate the discrimination felt by those with mental illness and their family caregiver.  Her hope is increased awareness will get more people to seek help.

Caregiver Depression a Slippery Slope

In a study of caregiver health risks, the National Alliance for Caregiving reported 91 percent of those caregivers whose health was in decline reported suffering from depression over caring for a loved one.

In addition, the Centers for Disease Control and Prevention (CDC) reported deaths from suicides since 2009 had surpassed deaths from motor vehicle crashes in the U.S.  The report also found the increase in suicides were most significant among the baby boomers – for men age 50-59 years old an increase of 47-49 percent and for women age 60-64 an increase of 59.7 percent. One potential cause cited for this increase was caring for an older, ailing parent.

We also know that for those 15 million Americans caring for a loved one with Alzheimer’s disease, the risk of becoming isolated from friends, other family and life’s typical social connections is a common issue based on how loved ones are shamed by their diagnosis.

According to the Alzheimer’s Disease International’s World Alzheimer Report, about 25 percent of people with dementia report hiding or concealing their diagnosis due to the stigma surrounding the disease, and 40 percent say they are often excluded from everyday life.

Read here about caregivers of veterans with invisible wounds of PTSD and TBI

 

©2017 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:

 

The Aging Dreamers in Celebration of Martin Luther King, Jr. Day

 

 

On January 15, we remember a great American – Martin Luther King, Jr. – and embrace his “I have a dream” mission and his service to our country. When it comes to caregiving, there are “aging dreamers” – the Dream Foundation – which grants wishes to terminally ill adults. We also showcase King Day of Service by showcasing ways in which you can volunteer for caregiving organizations.

Read more:

Check out our CEO Sherri Snelling’s articles on supporting the dreams and end-of-life wishes of our aging and ill loved ones, and volunteering in service to caregivers all in celebration of Martin Luther King, Jr. Day of Service:

What We Can Learn From Brittany Maynard’s Death (originally published on PBS Next Avenue)

Casey Kasem’s Legacy for Caregivers (originally published on Forbes.com)

How You Can Combat the Senior Hunger Crisis (originally published on PBS Next Avenue)

8 Ways to Volunteer to Help America’s Largest Volunteer Health Care Work Force: Family Caregivers (originally published on Huffington Post)

Enlist now to help caregivers of veterans

How Online Volunteers Support Caregivers (originally published on PBS Next Avenue)

Paying it Forward – Volunteerism Among Caregivers (originally published in USA Today)

Watch more:

We also offer our Me Time Monday video for caregiver tips on end-of-life wishes:

 

 

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

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

 

Dan Gasby & B Smith – The Hope to End Alzheimer’s

“I have a dream of a world without Alzheimer’s.”

–Dan Gasby

Dan Gasby and his celebrated wife B. Smith (known as Barbara to family and close friends) have always been partners – in love, in business, in life. As a former model turned beloved lifestyle icon with cookbooks, restaurants, a line of home goods at Bed, Bath & Beyond and as host of her own TV show, B. had built a wonderful life and achieved fame with Gasby’s management of her personal brand.

But after 22 years of marriage, Gasby writes in their book, Before I Forget, that he and B. started having struggles and he worried their marriage was in trouble.

It began as small arguments with B. becoming more distant and angry, a side he had never really seen in his wife before. When a reliable, punctual B. began showing up very late for important business meetings or missing them all together, Gasby knew something was wrong. But after an alarming 2012 Today TV segment where the ever- chatty and effervescent B. went silent and stared blankly at her co-hosts for what seemed an eternity, Gasby knew this was no mid-life crisis. A series of tests and visits with different specialists in Manhattan where they lived led the couple to hear a word they never thought would apply to either of them: Alzheimer’s.  B. was only 62 years old.

“B. has always been fearless, she has never been afraid of anything,” Dan Gasby told me during a break from their current book tour while they were in Birmingham, Alabama. “But both of us sat there in shock after the doctor told us B. had early on-set Alzheimer’s disease. Little did we know the journey we were about to take. But we both knew it was flight or fight and we are both fighters. I knew wherever we were going, we’d take the steps together just like we’d always done.”

Being Present and Patient

That was three years ago. Since then the couple have sold their Manhattan apartment and moved to their Sag Harbor, N.Y. coastal home. The soothing sea sounds and walks along the beach – together or alone but always with their cherished dog, Bishop – are a comfort to them both as they cope with this difficult diagnosis.

What has made their journey and their story unique is that B. is one of the rare Alzheimer’s sufferers who actually knows she has the disease. The Alzheimer’s Association reports only five percent – about 200,000 – of the more than 5 million living with Alzheimer’s disease receive a diagnosis in their 40s, 50s or early 60s. This awareness has made it easier and harder for the couple. They tackled the writing of the book (with help from Vanity Fair contributing editor, Michael Shnayerson) as they tackled everything – together. Both Gasby and Smith wrote chapters about how they were feeling through the years since B.’s diagnosis.

Dan and B. in the early days of their marriage

Gasby’s passages are filled at times with hilarious and at times heavy-hearted emotions. Beyond B.’s forgetfulness and some situations he calls the “WTF” moments help give a humorous theme to Gasby’s chapters. One example has Gasby learning to manage his ongoing frustration with not being able to convince his wife to let him hire someone to help B. organize her once pristine but now chaotic closet (he would not dare attempt the job). Then there are the more melancholy chapters about losing his lover, the woman he calls “sweetie” whose flirtatious, affectionate nature before and after making love is now dimmed. Through it all Gasby is learning how to be “present” and patient.

 

“I have learned the greatest language of all: patience,” he explained to me. “I came to a realization that Alzheimer’s had not just changed B., it changed me too. I also realized my frustrations weren’t really with B. they were with this disease and that helped me let go when I found myself getting annoyed at her.”

While Gasby’s writing is educational, especially about his quest to understand the science and research around Alzheimer’s, B.’s chapters are even more poignant since she knows one day she won’t remember any of it. Perhaps the most compelling of her writings is when she is mad about not being able to drive or when she is sad thinking she will visit her parents in Pennsylvania and then slowly remembers they passed away several years ago.

Watch Dan and B.’s story since her Alzheimer’s diagnosis:

Let the Mess Become Your Message

Gasby’s advocacy and urgency in seeking treatments and a possible cure to a disease that currently has no method to prevent, delay or stop it has led he and B. to support the Brain Health Registry. Last year, B. filmed a PSA for this online effort to encourage participation, especially among minorities, for clinical trials.

Watch the B. Smith PSA for the Brain Health Registry:

“While African Americans represent about 14 percent of the population, they bear over 30 percent of the costs of Alzheimer’s disease,” said Stephanie Monroe, executive director of AfricanAmericansAgainstAlzheimer’s. Launched in 2013, the organization is dedicated to labor intensive in-person community engagement to educate African Americans about the disease and to encourage more participation in clinical trials so essential to finding a cure.

In a report published and presented to the Congressional Black Caucus, it states that African Americans are over-represented when it comes Alzheimer’s but under-represented when it comes to research.

“The stigma in certain cultures and communities – especially among African Americans and Latinos – prevents many from ever receiving a diagnosis,” continued Monroe. “While early diagnosis can lead to treatments and drugs which are helping to slow the progression of Alzheimer’s, a later diagnosis offers fewer interventions. And with less participation in clinical trials, the hope of finding a cure is much more challenging.”

Jill Lesser, president of the WomenAgainstAlzheimer’s network that includes AfricanAmericansAgainstAlzheimer’s, said the laser focus of the organization is to find a cure for this disease by 2020.

“Most of those who are symptomatic of Alzheimer’s are probably already 10 to 15 years into the disease,” explained Lesser. “One of our research projects called Galaxy is designed for younger participants who don’t have any symptoms.  We’re taking a very disruptive approach to ending Alzheimer’s.”

Dreaming, Gardening, Creating a Vision

Gasby says he and B. decided to launch their book on Martin Luther King, Jr. Day because, “He was a hero of mine and he had a dream which we are still fulfilling,” said Gasby.

When I commented that he and B. are great examples of King’s legacy of pursuing a dream, he said, “I like to think of it more as a vision and a hope for future generations. Some day in the not too distant future, I would love to know little children are learning about Alzheimer’s disease – something they know nothing about because it doesn’t exist.”

He believes that in the same way we think today about smallpox or polio – diseases that devastated populations in the past but for which we found a cure – we have the ability to end Alzheimer’s. “But you cannot pray or talk this disease away,” said Gasby. “We must act – it’s like voting or participating in civil rights – you need to get out there and do something.”

B. is now in stage 5 of the 7 stages of the disease. Gasby told me it helps him to share his emotions – the good, bad and ugly – on Facebook. He said it’s like taking the top off a steaming, screaming kettle – once the pressure is released you feel better. The feedback he gets on social media is instant and encourages him that he and B. are making a difference.

“Right now I’m in the bargaining stage, I’ve done denial and anger and now I’m buying time in hopes that a cure will arrive,” shared Gasby referring to the five stages of grief identified by author and psychiatrist, Elisabeth Kübler-Ross.

He admits caregiving is the hardest role he has ever had to play. While he and B. have a close circle of family and friends, they have watched some “friends” slowly disappear because of their situation. He says that is okay with him.

“I look at it like having a garden where you need to pull some weeds out, fertilize the ground and the remaining plants grow even more strong and beautiful,” explained Gasby.

“Caregiving is a club I thought I would never join, I didn’t even really know it existed,” continued Gasby. “But caring for B. has made me a more complete person. You don’t really know who you are until you’ve faced real adversity and this is the hardest thing I’ve done but my ‘sweetie’ is worth it.”

This article was originally published on PBS Next Avenue

©2017 Sherri Snelling