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

November is National Caregiver Month

In Greek mythology, Zeus named one of the gods Atlas Telamon, meaning “enduring Atlas.” Over time Atlas came to represent the celestial axis around which the heavens revolve.

We chose this image of Atlas to commemorate November National Caregiving Month and honor the nation’s 65 million caregivers who essentially carry the care of the world on their shoulders.

Many caregivers say they feel “all alone” but they are one in an army of caregivers – the nation’s largest volunteer health care unpaid workforce and without our caregivers, our health care system collapses.

When you become a caregiver, you join a cast of caregivers. Our message to you is you are not alone.

Helping Caregivers Avoid Burn-out

Whether you are caring for an older parent, an ill spouse or sibling, a special needs child who is becoming an adult or a friend caring for a chronically ill friend,there are many ways we become caregivers. However, most of us are not well prepared for the caregiver journey. And, with lack of planning comes chaos, confusion, unforeseen costs and a common caregiving side effect we call “burn-out.”

Caregiving Club was formed to help guide you to a place of balance while caregiving – mentally and emotionally, physically and financially. Having good information on available resources is one part of our mission. We also help consult with companies that are recognizing the special role of caregivers and developing the services and products that help caregivers. And we provide content – good information to let you know we hear you and we’re trying to help with as much research and information we can find.

Our CEO Sherri Snelling writes on a variety of caregiving topics for PBS Next Avenue, Forbes.com, Huffington Post, USA Today and other outlets. You can check out most of her articles in our archives or click here for a complete list.

The Celebrity Caregiver Connection – A Cast of Caregivers

Sherri also interviews many celebrities who have cared for loved ones. A lot of people think celebrities have it easier – they have the money to hire a caregiving entourage. While that may be true for some of these high profile people, most, if not all, still ride into the caregiving roller coaster – the ups and downs of navigating a fragmented health care system, getting an older parent to communicate or comply with helpful services, digging into their own pockets (no matter how deep) to pay for the costs of care. Caregiving is the great leveler in our society – it cuts across all socioeconomic boundaries – all gender, age, race, religion, geography and economic status boxes that may otherwise separate us.

Take Care!

We celebrate the 65 million caregivers this month and every month and we thank you for your service and want to keep you well.

To that end, we have the following for you to check out:

Caregiving Club’s Me Time MondayTM  – a series of videos to help give you tips on how to balance self-care while caregiving. Created in partnership with the Caregiver Monday Campaign.

Caregiving Club’s Book Lovers List for some great books we find help caregivers.

Sherri Snelling’s “My Favorite Things” – services and products we love to help caregivers.

Caregiving Club Resources – We will launch our Caregiving Resources list this month so look for those helpful links to the services, organizations and products that will help you on your caregiving journey!

 

Celebrity Spotlight – A Cast of Caregivers

As we celebrate National Caregiver Month this November and recognize the more than 65 million caregivers in the U.S., some are bound to be “celebrities.”

Many people feel that celebrity caregivers don’t really know the challenges and certainly don’t fret the costs of caregiving like the rest of us. But our CEO, Sherri Snelling, has interviewed numerous celebrities and found when it comes to caregiving – even famous people face a fragmented health system, difficulty with conversations with older parents, sadness or frustration over not being able to control a chronic illness or devastating diagnosis that affects a loved one and not knowing where to turn.

The Celebrity Interviews

Following are some of the celebrities Sherri Snelling has interviewed over the years – not about their latest movie or TV show, album or book but about the role that is one we all will play in our lifetime: caregiver.

Alan and David Osmond Winng the Battle Against MS

Alana Stewart and Farrah Fawcett

B. Smith & Dan Gasby on Alzheimer’s

Billionaire Caregiver David Murdock Doles out Advice on Longevity

Brooke Shields – endless love in caring for her mom

Casey Kasem’s Legacy for Caregivers

Catherine Zeta Jones – a caregiver’s self-care mental health plan

Diane Keaton – Sandwich Generation caregiver

Fran Drescher – cancer survivor and 3 tips for caregivers

Glen Campbell’s Farewell Tour

Glenn Close wants to change your mind about mental illness

Jill Eikenberry & Michael Tucker – caregiving team for her mom with dementia

Joan Lunden – coast to coast caregiving

Joan Lunden on challenges of guilt and caregiving

Jodie Foster – Golden Girl Shines a Spotlight on Her Sandwich Generation Role

Kimberly Williams Paisley Chronicles Her Mother’s Dementia

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

Marg Helgenberger – Juggled College, Career and Caregiving

Meredith Vieira – caring for a husband with MS

Nancy Davis Races to Erase MS

Nancy Reagan’s Caregiving Legacy

Rizzoli & Isles Creator is on the Case

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

Seth Rogen Getting Millennials to Care About Alzheimer’s

What Suze Orman learned caring for her mother

Sylvia Mackey – Hall of Fame Caregiver Who Changed the NFL

The Red Carpet Interviews with Caregiving Celebrities

Also, watch Sherri Snelling’s interviews from the Red Carpet with celebrities such as George Clooney, Quincy Jones, Cybill Shepherd, Jane Seymour, Joey McIntyre and more talking about their caregiving journeys and how they find their “Me Time”

 

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

AARP Webinar – Caregiving Conversation with Dan Gasby and B. Smith

AARP hosts a caregiving conversation with Dan Gasby, husband and business partner to lifestyle icon, B. Smith, who was diagnosed with early on-set Alzheimer’s a few years ago.

Join Caregiving Club CEO, Sherri Snelling, as she talks with Dan and B. about their message of hope and advocacy in the face of this devastating illness:

When: Monday, February 27, 2017 from 7:00 – 8:00 pm EST (4:00 – 5:00 pm PST)

Where: https://aarptek.aarp.org/tek-online-webinars/2017/2/27/making-your-mess-your-message-featuring-dan-gasby-with-sherri-snelling

 (registration is FREE)

Dan shares his challenges in finding patience and being present, in understanding the disease that has changed his “sweetie,” and how we all have a role in fighting this disease that today affects 20 million Americans – 5 million living with the disease and 15 million who are caring for them.

 

To view other AARP Webinars with Sherri Snelling, check out the archived listings on AARPTek:

November, 2016 – “A Caregiving Conversation with Holly Robinson Peete”

January, 2017 – “Demystifying Medical Apps and Wearable Health Devices – an interview with Dr. Leslie Saxon of the USC Center for Body Computing at Keck Medicine of USC.

November 11 is Veteran’s Day

 

Every year we honor our veterans and their sacrifices – including the sacrifices of military families – to provide peace and freedom for America.

Veteran’s Day was established after the end of World War I – known as the “war to end all wars” – when a peace treaty was signed at Versailles, Paris on the eleventh hour of the eleventh day of the eleventh month between the Allied Forces and Germany. Thus, November 11, will forever be the day we honor those brave soldiers, sailors, marines, air force and other military from that war and every war since.

We know that 10 million Americans are providing care for a veteran – and 7 million of these caregivers are veterans themselves. Caregiving Club recognizes your special caregiving duties on this day (and every day) and thanks you for being our “heroes on the homefront.”

Our CEO Sherri Snelling (whose family members have fought in every U.S. conflict since the Revolutionary Way) takes special care to highlight the challenges of the caregivers of veterans. She was proud to be part of a landmark study conducted by the National Alliance for Caregiving and UnitedHealth Foundation, Caregivers of Veterans – Serving on the Homefront.

 

 

 

 

In addition, here are some of her articles and interviews with caregivers of veterans:

Caring for those with invisible wounds  (originally published on Huffington Post)

Boomer Parents Caring for a Veteran Son with TBI (originally published on PBS Next Avenue)

Rosalinda & Alain Babin – Boomer Parents Proud of Wounded Warrior Son (originally published on Caring.com)

Libby Hewes- A Veteran’s Caregiver Goes from Newlywed to Nurse (originally published on Caring.com)

Enlist now to help caregivers of veterans (a Memorial Day message from Caregiving Club that can be done anytime throughout the year)

Me Time Monday

Also watch our Me Time Monday video on tips for caregivers of veterans:

God Bless our veterans, those serving and all our military families and caregivers!

 

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

Do You Know Your Numbers? It Could Save Your Life

 

Every October we are immersed in a sea of pink – the color for breast cancer awareness –  yet the No. 1 killer of women in America remains heart disease.  In fact, twice as many women die from stroke or cardiovascular disease than all cancers combined, including breast cancer.  More than 1 in 3 women will die from heart disease this year – one every minute.

Go Red

This February, the American Heart Association celebrates its 14th anniversary of its Go Red Campaign in an effort to paint the town red and get women to stop and understand the truth of their heart disease risks.  Over the last 11 years the campaign’s success has paid off with amazing results:

 

  • More than 627,000 women’s lives have been saved through awareness and education – that is 330 lives per day
  • Almost two million women have completed the Go Red Check-up – a 10-fold increase since 2003
  • Women have changed their heart risky behaviors – smoking has decreased 15 percent, 1 in 2 women have increased their exercise and cholesterol levels are 6-18 percent lower for those with readings over 200

“Women who Go Red have the awareness and are more empowered to make lifestyle changes,” says Dr. Suzanne Steinbaum, Go Red cardiologist and author of Dr. Suzanne Steinbaum’s Heart Book:  Every Women’s Guide to a Heart Healthy Life.  “Nine out of 10 of the women who visit our web site have made at least one healthy behavior change. But we still need to spread the word because there is a disconnect between women knowing about heart disease as the No. 1 killer and understanding their personal risk.”

 You Know Your Body Better Than Any Doctor

One woman who became the most unlikely poster woman for heart disease is Dianne Kane-McGunigle of Quincy, Mass.  The 53-year-old platinum blonde stunner was always fit and healthy working as a personal trainer and fitness instructor and running marathons on weekends.  The mother of two had grown girls had always watched her numbers – things like weight, cholesterol and blood pressure and according to her doctor was as healthy as a woman at least a decade younger.

But one day last year, Dianne clutched her chest, hit the floor and found her police officer husband rushing her to emergency.  All she could think about was, “Please don’t let this be bad – I haven’t had grandchildren yet.”

“I come from tough Irish stock and in retrospect I was overlooking some small warning signs because in my family you just tough it out,” says Dianne.

A couple of days before this emergency, Dianne had experienced some acid reflux and her forearms were achy and kind of numb.  She chocked it up to pushing herself too hard in recent workouts.  But the night before her attack she had tiny spams in her heart and she started sweating and feeling nauseous.  Next thing she knew she was on the floor and then in the hospital.

“Heart disease in women often presents differently than what we see in men,” says Dr. Steinbaum.  “It can be a sudden chest pain, such as what Dianne experienced, but it can also be more subtle – shortness of breath, jaw pain, back pain, flu-like symptoms, difficulty sleeping and the symptoms Dianne experienced such as nausea and vomiting.”

In addition, women who are caregivers – caring for an older parent or spouse with a devastating disease – are at greater risk for heart disease because of the prolonged emotional stress of caregiving, neglect of their own health and wellness needs and a tendency to adopt or rekindle bad habits such as smoking.

The ER doctors ran tests and told Dianne she was fine and was probably just experiencing a panic attack or had over-exerted herself at the gym.  But Dianne knew better.

“If I have any message for women out there – it is to be an aggressive advocate in your health and the health of your loved ones,” she says.  “I knew something was really wrong and I wasn’t going to be ushered out of the hospital as someone who just had a simple panic attack.”

She begged a kind nurse to run more tests.  “I’m dying,” Dianne told the nurse.  “You have to help me.”

Additional tests found that indeed Dianne had suffered a heart attack known as a widow maker.  This is a type of heart attack where it is a stenotic left main coronary artery –  a blood clot prevents blood from pumping through the left descending artery often resulting in a massive, sudden, fatal heart attack.  This is the same kind of heart attack that Rose O’Donnell survived a few years ago.

“My doctors and I truly believe if I had not been as fit as I was, I would surely be dead,” says Dianne.

All In the Family

 

The American Heart Association advises women to know five important things when it comes to heart disease:

  • Don’t smoke. Period.
  • Know your numbers – blood pressure, cholesterol, blood sugar (for diabetes risk which is tied to heart disease).
  • Maintain a healthy weight and BMI (body mass index) by eating nutritiously.
  • Have a consistent exercise schedule (it keeps your body fit and reduces stress).
  • Know your family history.

Dianne (left) with twin sister Denise

It is #5 that hit Dianne like a Mack truck.  She had all the other items checked but she had no idea that in her family, the widow maker type of heart attack is on both sides of her family tree.

“That was my wake-up call,” says Dianne, who has an identical twin, Denise.  Now this Go Red spokeswoman talks to other women about heart health and understanding each of the five things that could contribute to a life-altering event.

 

“Go Red encourages women to wear your red and tell five friends about the heart disease risk factors,” says Dianne.  “I have five sisters, including my twin sister, and we’ve all talked about our family risk.  I Go Red for them.”

 

©2017 Sherri Snelling

 

 

 

 

The Dream Team – How Caregivers Can Help Loved Ones Achieve Their End-of-Life Wishes

Fifty-four years ago, 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 MotherTeresa 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 the 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.

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

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.

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.  But 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.

Seventeen years ago, 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 move 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. Rollerson, dedicated to helping his loved one see a last movie, 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.

Undaunted, he contacted the movie studio, Twentieth Century Fox, and 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 created in 1994.

To date, The Dream Foundation has fulfilled thousands of wishes for adults battling terminal illnesses including more than 2,500 dreams in 2012.  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) he says his favorite wishes granted are the simple ones.  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.

 

©2017 Sherri Snelling