White House dreamstime_m_13650075 (2)On President’s Day, we honor two great men who have led this country through its creation and one of its most trying times – namely George Washington and Abraham Lincoln respectively.  But today I honor the First Ladies who have helped care for this nation and in turn have been caregivers for family members.

Hillary Clinton, Nancy Reagan, Barbara and Laura Bush and the caregiving pioneer, Rosalynn Carter, are passionate advocates for our nation’s 65 million caregivers because they have taken the caregiving journey themselves.

Hillary Clinton dreamstime_m_18904593 (2)Hillary Clinton – Caregiving Champion

In 2011, Hillary Clinton lost her 92-year-old mother, Dorothy Rodham.  While the details of her mother’s passing and possible illness were kept private from the invasive world of 24/7 news media, Clinton has been a long-time advocate of the nation’s caregivers when she was a Senator from New York.  She supported several pieces of proposed legislation which offered more services to support those family members who are providing 80 percent of the long-term care to keep a loved one living at home as long as possible.

In an interview from Clinton’s campaign days for the Democratic presidential nomination, she credited her mother with giving her the tools — and toughness — to enter politics.  In the end, her mother had also given her daughter the tools to be a compassionate caregiver.

 

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

Nancy and Ronald Reagan’s touching affection for each other was evident in the letter former President Reagan wrote to tell the world he was suffering from Alzheimer’s disease.  In this letter, President Reagan not only helped shine his celebrity spotlight on a disease many Americans did not understand, but he also highlighted the concern he had for Nancy who would be caring for him.  He understood the difficult emotional toll it would take on his wife and as the disease progressed, and the last 10 years of his life he did not even recognize her.

As the caregivers of today’s more than five million Americans diagnosed with Alzheimer’s disease know, Nancy lived the last 10 years of her husband’s life known to dementia caregivers as the long good-bye. While Nancy had the resources to care for her husband in ways most Americans do not, the emotional toll it took on her cannot be ignored.

What was perhaps most heartwarming was that the strained relationship Nancy had with her stepchildren and with her own son and daughter, actually improved over the course of President Reagan’s disease diagnosis and decline.  Family dynamics are sometimes difficult to navigate during caregiving and can lead to added stress and strife.  But, in this instance, it brought a family closer together which is one of the gifts that can come from caregiving.

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

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

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

Long recognized as one of the pioneers of the caregiving movement, Rosalynn Carter is known for her famous description of the life event of caregiving in America:

You have been a caregiver

You are a caregiver

You will be a caregiver

Or someone will be caring for you

In her book, Helping Yourself Help Others – A Book for Caregivers, former First Lady Rosalynn Carter writes, “We can learn to approach caregiving as a blessing as well as a challenging task.”

She knows of what she speaks firsthand:  Rosalynn was only 12 years old when her father was diagnosed with terminal leukemia.  As the eldest daughter, she helped care for her ailing father and supported her mother by also caring for her younger siblings.  She took up caregiving again for several relatives with cancer after she left the White House and most recently was caregiver for her mother who died in 2000 at age 94.

Rosalynn’s gift to caregivers comes from a lifetime of understanding the challenges – emotional, physical and financial – that accompany caring for a loved one.  A long-time devoted and determined advocate for those Americans with mental health issues, Rosalynn Carter is also behind the founding of the Rosalynn Carter Institute (RCI) for Caregiving at Georgia Southwestern State University in Americus, Georgia.

The mission of the RCI is to establish local, state and national partnerships with organizations focused on quality, long-term home and community based services to help caregivers.  The RCI activities include a variety of advocacy, academic, and awards and scholarship programs.  While many of the caregiver programs are Georgia-based, these programs are examples that help serve as models for nationwide caregiver support, education and training.

Mrs. Bush 41 and 43

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

 

Laura BushLaura Bush, an only child who grew up in the oil town of Midland, Texas, played caregiver to both her mother and her father.  While campaigning with her husband George Bush who was running for governor of Texas, her father was diagnosed with Alzheimer’s disease.  While Laura played back-up to her mother who was primary caregiver, she poignantly wrote in The Shriver Report:  A Woman’s Nation Takes on Alzheimer’s about the impact to families when Alzheimer’s disease happens.

“What my mother noticed first was that my father could no longer fill out bank deposit slips. He would stare at the lines on the forms, a look of confusion washing over his face. So Mother began to make the deposits for him. We never got a diagnosis of Alzheimer’s or a specific form of cognitive failing. But we saw his mind erode. Once, he asked our daughter Barbara to get him some ‘B & Bs.’ He meant M&Ms, but he kept saying ‘B & Bs.’ In her 10-year-old way, she understood him and came out of the grocery store with the brown bag of the bright candy just the same.”

Laura stepped in again to care for her mother, Jenna Welch, who was diagnosed with and survived breast cancer when she was 78.  Laura’s support of Susan G. Komen for the Cause and her activism on behalf of women’s risk of heart disease has led her to play a leading role in women’s and caregiver health issues. She is an ambassador for The Heart Truth campaign created by the National Heart, Lung and Blood Institute and dedicated the inaugural display of the First Ladies Red Dress Collection at the John F. Kennedy for the Performing Arts in 2005.

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

Our current First Lady Michelle Obama joined the ranks of caregiver growing up as the daughter of a father with multiple sclerosis.  Her experience in helping to care for a father with an autoimmune disease currently affecting more than 400,000 people in the U.S. with 200 more people diagnosed every week gave her early insights to the impact of caregiving on families.  Michelle has been a true champion of the Sandwich Generation – those caregivers squeezed between caring for two generations – children and older parents.

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

This is adapted from Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.


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Heart Health by the Numbers – 11 Years of Go Red

?????????????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.

This February, the American Heart Association celebrates its 11th 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.”

Diane and her twin sister, Denise

Diane and her twin sister, Denise

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 last year.

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

Heart Monitor dreamstime_m_4176220 (2)The American Heart Association advises women to know five important things when it comes to heart disease:

1)      Don’t smoke. Period.

2)      Know your numbers – blood pressure, cholesterol, blood sugar (for diabetes risk which is tied to heart disease).

3)      Maintain a healthy weight and BMI (body mass index) by eating nutritiously.

4)      Have a consistent exercise schedule (it keeps your body fit and reduces stress).

5)      Know your family history.

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.”

February – Heart Health Month

Heart Monitor dreamstime_m_4176220 (2)Caregivers often have no time to care for themselves – aerobic fitness, good nutrition and ways to de-stress take time – something caregivers just don’t have. Heart disease is the #1 killer of both men and women and caregivers are more at risk for this deadly killer. Our articles all month focus on heart health tips, stories and more. We help those who give their heart to others, find ways to care for their own heart.

A Woman Tackles the NFL and Dementia

Football 50 yard line dreamstime_m_15024968 (2)As the Seattle Seahawks celebrate their glory as victors in Super Bowl XLVIII this Sunday, another NFL victory took place off the gridiron several years ago and was led by a warrior woman.

Her name is Sylvia Mackey, wife of NFL Hall of Fame and 1971 Super Bowl hero John Mackey of the Baltimore Colts. Their love story is about football, courage, overcoming all obstacles and fighting for support of those afflicted with neurological challenges. Following is an excerpt from my book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, where I interviewed Sylvia about her story and how she changed the game for the NFL.

For Love of the Game…and the Man

When it comes to the gladiators of the gridiron, he was the Charlton Heston or Russell Crowe of his day.  But in the end, it would be his wife – on the sidelines of his entire career – who would become the warrior at the center of the action.  When John Mackey, No. 88, was inducted into the Pro Football Hall of Fame in 1992, he was only the second tight end to receive the honor.  He was and still is considered one of the best tight ends to ever take the field.  In fact, Mike Ditka, himself a Hall of Fame player and the first “pure” tight end to be inducted into that rare club of exceptional players, stated Mackey should have been first.

john-mackey nfl baltimore colts from WebAs a Baltimore Colt, where he played all but the last year of his career, John scored one of the most famous plays in the NFL championship history.  It was Super Bowl V played in 1971, when John caught the nail-biting pass from the quarterback Johnny Unitas that first careened off the hands of the opposite team’s player, grazed the fingertips of his teammate and finally wound up safely in the arms of John who then ran it for a then-record 75-yard touchdown.  It was this decisive play that helped the Colts beat the Dallas Cowboys and won John his coveted Super Bowl ring.

Twenty-one years later, as John took his place in football’s pantheon of great players for his Hall of Fame induction ceremony, right by his side was the woman who had been in the same spot since his college playing days, his wife, Sylvia.  Theirs would prove to be a true love story, challenged only by a devastating medical diagnosis.

Little did either John or Sylvia know that day in 1992 that 14 years later, John’s toughtest battles would be fought off the football field with his lovely wife serving as both tackler and blocker.  At age 65 John Mackey was diagnosed with frontotemporal dementia (FTD), a degenerative disease caused by the rapid deterioration of the frontal and temporal lobes of the brain.

Tackling Dementia

What makes Sylvia’s story one of inspiration is this diagnosis could have sacked her (in football jargon) but instead she did not let this devastating news knock her down.  One incident that highlights the special challenges dementia caregivers face was played out at the Baltimore/Washington International Airport.

“John and I were on our way to an autograph signing – we never missed one and I was determined this was something we were going to continue to do – it always made John happier as we got ready for these annual trips,” says Sylvia.

JohnandSylviaMackey (2)But this year was different.  There was an incident with the TSA airport security that almost took them both down – literally.  Her husband, proudly wearing his Super Bowl ring and trademark cowboy hat (hallmark of his Super Bowl win over the Dallas Cowboys), refused to remove these items and place them on the conveyor belt to be scanned.  In his mind, he did not understand there had been a 9/11, he did not understand why they did not recognize him, and ultimately he thought they were trying to rob him of his precious possessions.

As John grew more frustrated with the TSA agents who, unaware of his diagnosis, thought he was just being a belligerent traveler, the agents grew increasingly irritated and finally tackled him but not after chasing the six-foot two-inch 220-pound former football player who dragged the agents several feet through the airport until several more agents joined in, handcuffed him.

While a tearful and frightened Sylvia explained to the agents and curious onlookers her husband was the NFL great and one of Baltimore’s favorite sons, John Mackey, and that his illness meant he had no ability to understand what was happening, she ultimately convinced the agents to call an ambulance and they took him off to a local hospital. She collapsed while they dragged her confused husband away, and thought to herself, “I don’t know if I can do this anymore.”

Hemingway wrote, “Courage is grace under fire.” 

When Sylvia caught up with her husband at the hospital, John was back to his typical, jovial, social self – signing autographs for many of the doctors and nurses who recognized the NFL great.  It was at this moment as her husband basked in the bright light of his fame, she realized she could not give up on her husband or herself.  That is when her courage took flight.

Instead of deciding that attending future autograph signings or Super Bowls would be out of the question, Sylvia got to work contacting the head of TSA at Baltimore/Washington International.  She explained her situation and asked for his help to allow her husband to travel – especially to the sporting events and autograph signings he truly lived for and were important to maintaining some type of normalcy in their lives.

The TSA executive designed a plan with Sylvia to have John brought through a private area where they could scan him without incident and without his having to remove the items precious to him.   In addition, the TSA executive also would contact the TSA executive at the arrival airport to explain how similar treatment of John upon his return flight out of their airport would be helpful to avoid any similar, dramatic incidents that neither party wanted.

Now before you think these special plans are just for those with famous last names – this is a lesson learned for all caregivers from Sylvia’s story. If you plan ahead, you can use Sylvia’s travel strategy to continue to travel – most airports will work with caregivers on the special travel needs of their loved one.

The Final Play

Sylvia Mackey bio photoSadly, John Mackey lost his battle with dementia and passed away in 2011.  A few years ago before losing her husband, Sylvia had written a passionate letter to then NFL Commissioner Paul Tagliabue asking for more support for retired players when it comes to their long-term care (LTC).  In his decade-long career, Mackey made about $500,000 – a salary many back-up players make in one season today.  The health benefits plan was championed by current Commissioner Roger Goddell and was adopted by the NFL in 2007.  The NFL named it the 88 Plan, to honor Mackey’s jersey number.  The plan provides retired players suffering from Alzheimer’s disease, dementia, ALS or Parkinson’s disease with $100,000 annually for long-term care or adult day care or $88,000 annually to secure care at home.

Today, Sylvia is a board member of the Association of Frontotemporal Degeneration (AFTD) and speaks to caregivers across the country about the impact of dementia on families.

This is an excerpt on Sylvia Mackey’s story from Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, available on Amazon, Barnes & Noble and other online and local booksellers. 

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Hitting the Caregiving High Notes – Music as Therapy

2014-56th-grammy-awards-logoAs I watched the Grammy Awards tonight, it brings to mind the power of music to heal us.  Numerous studies have shown the therapeutic effects of music for those with everything from Alzheimer’s disease to autism.

When it comes to Grammy winners, none are bigger than Glen Campbell and Quincy Jones – both of whom are touched by caregiving and music therapy.

I interviewed Kim Campbell, who is now caregiver to her husband, country music icon Glen Campbell diagnosed in 2012 with Alzheimer’s, she said music has helped her 77-year-old husband to cope with his diagnosis when he toured during his Farewell Tour a couple of years ago. During one concert stop, Campbell forgot the chorus to one of his smash hit songs but the audience sang the lyrics for him and he was able to regain his memory of the song without missing a beat on his trusted guitar.Glen and Kim Campbell dreamstime_m_23475186 (2)

I also spoke to music legend and multiple Grammy winner Quincy Jones about his latest passion projects which include the amazing effects of music as therapy for children with Down Syndrome and older Americans with dementia.

Quincy Jones crop

Is music one of the keys to a longer, happier life – despite your health issues?

Although music has been with us since the dawn of time, in the last few decades studies have proven that music as a therapeutic tool can increase cognitive function in Alzheimer’s patients, help premature infants gain weight, encourage autistic children to communicate, lead stroke patients to regain speech and mobility, control pain for dental, surgical and orthopedic patients and manage anxiety and depression for psychiatric patients.

Dr. Oliver Sacks, a renowned neurologist and psychologist at Columbia University Medical Center best known for his 1973 book Awakenings, which became an Academy Award-nominated film starring Robin Williams and Robert De Niro, and who also wrote Musicophilia: Tales of Music and the Brain, testified at the Hearing before the Senate Special Committee on Aging entitled, “Forever Young: Music and Aging,” and issued this statement:

“The power of music is very remarkable… One sees Parkinsonian patients unable to walk, but able to dance perfectly well or patients almost unable to talk, who are able to sing perfectly well… I think that music therapy and music therapists are crucial and indispensable in institutions for elderly people and among neurologically disabled patients.”

Brain Fitness Through Music

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Since music is associated with one of the five senses – hearing – which is controlled by the brain, it makes sense we should exercise our brains with music listening to spur cognitive function in the same way we use physical therapy to exercise our limbs, muscles and joints to regain mobility and physical function. 

Studies have shown that music reduces agitation or improves behavioral issues such as violent outbursts in dementia patients.  In one pilot program, 45 patients with mid to late-stage dementia had one hour of personalized music therapy, three times a week, for 10 months, and improved their scores on a cognitive-function test by 50 percent on average. One patient in the study recognized his wife for the first time in months.  Another music therapy study showed that stroke victims can learn to walk and use their hands again.

And music therapy is not just used with older patients.  When it comes to those children diagnosed on the autism spectrum, music therapy allows these children to develop identification and appropriate expression of their emotions – music becomes the universal language.  Many people with diagnoses on the autism spectrum have innate musical talents so music therapy can provide these kids a sense of accomplishment and success.

When I spoke to Holly Robinson Peete, the successful actress, talk show host and singer, about her son R.J. who was diagnosed at age three with autism, she said he loves music and he has even recorded a song.  In fact, Holly finds music a great way for her entire family to connect with R.J. and to enter his world.

Holly with RJ

She told me, “I think music makes him more comfortable – it is a way for R.J. to communicate without being judged.”

Music – A Cure for Caregiver Chaos

Music as therapy is not just for your loved one.  We know caregivers encounter increased stress over caring for a loved one – in fact caregivers who reported their health was impacted by caring for a loved one cite stress as their No. 1 challenge. Studies show listening to music can lead to increased secretion levels of melatonin, a hormone associated with mood regulation, lower aggression, reduced depression and enhanced sleep.  Using music to cope with these common caregiver complaints can be a welcome relief to caregiver burn-out.

How to Use Music in Your Caregiving Plan

The 2008 documentary Young @ Heart showcased a chorus of 80-year-olds singing Beatles, Rolling Stones and Sonic Youth cover songs, but most experts agree that with an older loved one it is best to choose music that reminds them of an earlier, happier time in their lives.  Here is my 5-Note Caregiver Music Therapy Program:

  1. Discover the “happy times tunes”:  Talk to your loved one about happy times in their life and understand the music associations with that time are essential to their sense of happiness.  Whether it is big band, gospel, rock ‘n’ roll, country, opera or blues, find out what tunes make your parent or spouse smile.  Most older loved ones, especially Alzheimer’s patients who retain long-term memory as opposed to short-term memory, find tunes from their youth the most joyful. But be careful,  music can also evoke sad memories.  One Holocaust survivor in a pilot program reportedly became very upset upon hearing a Wagner opera which reminded him of that traumatic era of his life.
  2. Engage younger generations:  You can help create emotional intimacy when spouses and families share creative music experiences.  Whether it is downloading songs from iTunes, creating a Pandora play list or using the latest technical creation for digital music files, engage your kids in interacting with their grandparent or sibling with special needs to choose their favorite music.
  3. Pick the right setting:  It may not be as simple as turning on a radio.  The radio can be distracting with constant advertising that breaks the peace of music.  Instead, try internet radio like Pandora channels, or use an iPod or CD player instead.  And be careful with headphones – some may take comfort in the privacy of headphones while others will become irritated or uncomfortable.   Also consider live music situations carefully.  For author Gail Sheehy who wrote about her caregiving journey in Passages in Caregiving, being able to take her husband, who was suffering from cancer, to a last jazz night out on the town was a gift she will always treasure.  But for special needs children and some older adults – the unsettling activity of a live concert or band can be frightening.
  4. Let your music play:  As a caregiver music is your therapy as well. Whether it is creating your own playlist to lift your mood when you have the blues or just taking pleasure in watching your loved one become engaged, music can make your heart soar.  Celia Pomerantz, author of A Mother’s Daughter’s Journey, found that her mother, who grew up in Puerto Rico, loved a certain era of salsa music such as Tito Puente.  She created song lists of her mom’s favorite tunes while her mother was in a nursing home.  Celia became enchanted as her mother blossomed into the woman residents called “the dancing queen.”  The joy of music and watching her mother dance lifted Celia’s spirits about her mother’s Alzheimer’s diagnosis.
  5. Find a professional music therapist:  The American Music Therapy Association (AMTA), a non-profit organization that represents over 5,000 music therapists, corporate members, and related associations worldwide offers information about music therapy studies and a listing of credentialed music therapists that offer services in institutional, residential and private home settings.

Music can both evoke and create memories that last forever.  I close with this heartwarming story from the AMTA web site:

When a couple danced together for the first time after five years of the husband’s deterioration from probable Alzheimer’s disease, the wife said:

“Thank you for helping us dance.

It’s the first time in three years that my husband held me in his arms.”

Tearfully, she said that she had missed him just holding her

and that music therapy had made that possible.

This blog is adapted from A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care available at online and retail booksellers worldwide.

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I Have a Dream – How Caregivers Can Perform a Service for Their Loved One’s End-of-Life Wish

martin-luther-kingWhen Martin Luther King Jr. gave his famous “I Have a Dream” speech on the steps of the Lincoln Memorial in Washington, D.C. 51 years ago, he was talking about a making a better future for African Americans.  In his honor, we celebrate Dr. King’s birthday this month with the “MLK Day of Service” where thousands of Americans across the country perform activities to make things better for others.

While there are many ways you can volunteer today, there is a service caregivers can perform for their loved one: Help fulfill their dream by achieving something on their bucket list.

The Dream Foundation

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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 2013.  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 Dream Foundation gave her a weekend stay at a five-star resort.
  • A 40-year-old man with lung cancer was granted a last wish by The Dream Foundation of a fly fishing trip with his young sons.
  • 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:  This blog is adapted from A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care by Sherri Snelling.

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Suze Orman’s Lessons Learned on Long Term Care

Sherri Snelling talked to America’s financial goddess, Suze Orman, and found when it comes to caregiving, we all face challenges with money. Read Suze’s story as caregiver to her mom and what she learned about the costs of long-term care. You can also read this article on on Forbes.com and PBS Next Avenue.org.

Suze Orman’s $25,000 a Month Cautionary Tale – Your Parent’s Long Term Care Can Cost You

100010081-suze-orman-headshot-2013.240x240Suze Orman has been called a “force in the world of personal finance,” was recently named one of the Top 10 most influential celebrities by Forbes magazine and is the single most successful fundraiser in the history of Public Television.  Yet even with the award-winning TV show, best-selling books, numerous accolades and worldwide influence as a guru of empowering people to save for retirement, get out of debt and have a healthy relationship with money, Orman admits she was as unprepared as the rest of us for becoming a caregiver for her late mother.

It was just a few years ago when Orman realized the harsh, brutal winters of her Chicago hometown were talking a toll on her mother, Ann, who was in her 90s. Her mom was becoming more and more isolated – living alone and not venturing outside.

“She just stayed at home and wouldn’t go out for months on end,” Orman told me.  While Orman lived in San Francisco at the time, her brothers were closer – one in Chicago where he picked up their mother for Sunday dinners – but it wasn’t enough to maintain their mother’s spirits and health according to Orman.

After a family discussion about Ann’s long-term care, Orman made the difficult and rare decision to not only move her mom to an assisted living facility in Florida, but Orman pulled up stakes herself and with her wife left their beloved Bay Area home to move to Florida to be there daily with her mom.

A decision to move because of caregiving is not only emotionally difficult but may be financially impossible for most Americans.  More than eight million of the nation’s 65 million caregivers live long-distance – defined as two hours or more away – from their loved one according to the non-profit Caring From a Distance. Genworth which conducts an annual survey of long term care costs for nursing homes, assisted living facilities and in-home care issued a report, Beyond Dollars – The True Impact of Long-Term Caring,  finding 42 percent of caregivers moved their older parent into their home for three years or more to care for them and off-set in-home care costs.

What was truly unique and brilliant about Orman’s plan is SHE moved into the assisted living facility with her mom for the first week to help her mom adjust and settle into her new home.

“I looked at it like the first day of school – you want to ease your parent’s transition to something new and I wanted to see firsthand how things ran,” explains Orman.  “It’s one thing to make an initial VIP visit to a facility, it’s another to wake-up and have breakfast in the dining room with everyone else and experience the daily routine.” Orman chuckles as she remembers residents and staff wondering why Suze Orman was living in assisted living but the experiment helped her understand the realities of long-term care.

The Real Costs of Care

Photo courtesy of Suze Orman

Photo courtesy of Suze Orman

While Orman’s mom agreed to the move and new living accommodations, Orman says she had not been successful in getting her mom to discuss and select a long-term care plan that would have covered these costs. According to the Department of Health and Human Services, at least 70 percent of people over 65 will eventually need long-term care, either at home or in a nursing home, an expense that will not be completely covered by Medicare, a fact lost on most unaware Americans. A great resource for caregiver education on long-term care is the web site operated by the Administration on Aging which outlines long-term care benefits, services and who pays for what.

“I filled out the paperwork on long-term care plans and gave it to my mom on several occasions but she never signed them,” laments Orman.  She believes it is the typical response of parents, particularly mothers, to not want their children, no matter how adult or capable, to worry about them.  Yet, ultimately without a good long-term care plan or robust savings, the financial burden will fall to the caregiver.

“I spent $25,000 a month the last two years of my mom’s life to have around-the-clock care for her and I was lucky because I was in a position to afford the cost – something most Americans cannot do,” cautions Orman.

Last year the Commission on Long-Term Care, a task force created by Congress to address the gaps when the CLASS Act (Community Living Assistance and Services and Supports) long-term care program (which was championed by former Senator Edward Kennedy) was repealed, issued a summary of recommendations recognizing the tremendous financial burden on families to adequately address our nation’s long-term care costs. However, no specific remedies or solutions were spelled out frustrating many in the aging organization network.

In response to the Commission’s recommendations, Howard Bedlin, vice president of Public Policy & Advocacy for the National Council on Aging, said in a statement, “Medicare does not cover long-term care, private insurance is unaffordable or unavailable to the vast majority of Americans, and individuals and families are forced to spend-down their life savings into poverty before getting help from Medicaid. It is now time for Congress to stop ignoring the problem and take action. Far too many members of Congress are out of touch with the enormous challenges faced by millions of middle-class families struggling to afford long-term care services needed to stay at home and out of institutions and relieve the tremendous economic, physical, and emotional burdens of caregiving.”

As Suze Orman learned in her own caregiving experience, the emotional and financial burdens for long term care of our elder population can fall squarely on the shoulders of family caregivers.  She advises caregivers to avoid living in denial of this situation today because it may destroy your financial stability tomorrow.  Or as Orman succinctly told me, “It’s easy to die, it’s hard to age.”

Suze’s Sage Financial Advice for Caregivers

Bucketful of Cash dreamstime_xs_13109928 (2)Orman has now counseled other family members, including her aunt and uncle, to secure long-term care plans. Her advice is if you can afford the premiums and you can make a promise to yourself to continue to pay into the plan even after 10 years, then it is a wise financial move.

Since January is Financial Wellness Month, I asked Orman to provide some savvy financial advice for caregivers. A great help is to check out Suze’s financial planning tools, “Must Have Documents” on her web site as well as these tips:

  • Buy only what is affordable. Do not stretch to buy a policy that covers 100 percent of anticipated future costs. It is far smarter to buy the amount of coverage for which you are sure you can keep making the premium payments. It makes no sense to buy a policy today that you will have to abandon in a few years because it is too expensive; you will get no benefit if that happens. Focus on what is safely achievable: Better to buy a policy that will cover 25 to 50 percent of future costs than no policy at all.
  • Insist on an inflation adjustment. The cost of care rises each year; you need a policy whose benefit will also increase. Given the above-average inflation rate for health services, look for a 5 percent annual inflation adjustment.
  • Aim for the shortest possible elimination period. This is the time before your policy kicks in; for example, if you have a 30-day elimination period, you’d pay for your first 30 days of care out of pocket. The shorter your elimination period (30 days is a typical minimum), the pricier the policy. If it’s 90 days or longer, make sure you have other assets that you could use to pay for your care for that length of time.

You can find more costs of caregiving and financial tips/resources in Sherri’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

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Caregiving Resolutions Done Right – Out with the NYRs, In with the MTMs

New Years Scrabble SMALL dreamstime_m_12065390 (2)The start of a New Year is the time we reflect on all the things we wanted to do or should have done yet didn’t get accomplished in the past year.  Thus, we resolve to address these self-makeover wishes in the coming 12 months. “Coulda, shoulda, woulda” is the statement we erase from our vocabulary in January as we hit reset on our bold, ambitious plans. Yet according to the University of Scranton researcher John Norcross and author of Changing for Good, one in four of us make a resolution for the New Year but after six months only 46 percent are still sticking with it.

With the hectic pace of the holidays over, the frenzy over buying gifts and seeing friends and family is done (at least for another 12 months).  You can finally breathe.  That is, unless you are one of the 65 million Americans who are caring for a loved one – the moment to put the world on pause and get a break never seems to happen.

Which is why I feel caregivers should exempt themselves from resolutions all together.  The very nature of resolutions is a reminder of how we failed. This is why I hate them.  I hate being reminded that I have somehow failed in an attempt to accomplish a goal.  Instead of focusing on the negative I try to remind myself failure can be a teacher.  Tragi-comic author, playwright and poet Samuel Becket famously said, “Ever tried. Ever failed. No matter. Fail Again. Fail Better.”  I couldn’t say it better.

Now, if you are a caregiver – you are NOT failing – you are accomplishing one of life’s precious goals – caring for another. You may not have enough time for yourself in your caregiving state is why my message to all caregivers is to banish the New Year’s Resolutions (NYRs) and adopt my Me Time Monday (MTM) plan.

Making It Work

Monkey Teeth dreamstime_m_7590920 (2)1. Banish negativity

Richard Wiseman, a psychologist at the University of Hertfordshire in England, author of :59 Seconds and creative consultant to the TV show The Mentalist, says those who fail to keep their resolution have one common pitfall which is focusing on the downside of the goal. You suppress your cravings, fantasize about being successful, adopt a role model or rely on willpower alone. But these aren’t pleasurable experiences, they are torture and you will soon abandon them. He stated in an interview with The Guardian, “Failing to achieve your ambitions is often psychologically harmful because it can rob people of a sense of self control.”

For caregivers, resolutions are even harder especially since you are typically juggling many of life’s balls – children, career and caregiving – and the ball getting dropped is the one that says “self-care.” Adding one more thing to your To Do List in 2014 is enough to make you cry (or scream, or throw something or grab that pint of mint chocolate chip ice cream that makes you feel better, until you step on the scale).  However, there is hope.

Jump for Joy dreamstime_m_5332888 (2)2.      Make a Plan Focused on Personal Joy

My solution for caregivers is to re-wire our brains to think “what am I giving myself” instead of “what am I not going to give myself.”  This year, you are going to give yourself a gift – that’s right – no cutting back, no cutting out and no cutting corners. If you follow these steps, you will not only improve your physical health but your mental health and that is a resolution worth celebrating.  You are going to take the remote control of your life back.

 

 

 

Monday calendar dreamstime_14224102 (2)3.      Use My Me Time Monday℠ Method

When you become a caregiver, you often feel like you entered one of today’s popular reality TV programs – it is like Survivor and The Amazing Race all at once. Instead of frantically looking for clues, or worrying about what the tribe will say  let’s call your 2014 reality show Me Time Monday and there are 52 episodes (one each Monday).

 

What is Me Time?

If you are asking, “What is Me Time?” then we really have to do an extreme makeover on you. Me Time is a concept that has been written about by CNN, Forbes, WebMD and advocated by many of the self-help gurus and health professionals I admire such as Dr. Oz, Louise Hay, Dr. Andrew Weil and Dr. Alice Domar. It is the essence of self-care which is the balance you need when you are caregiving.

Me Time is how you define it. First of all, you need to make a list of all the things you love to do that are just for you. These are probably things you have abandoned or at least don’t get to as frequently if you are caregiving.

It helps to think about things you loved to do as a kid (bike riding, hopscotch), or activities you enjoyed when you had no pressing responsibilities (such as kids, a job, a husband or a loved one to care for).  Your Me Time may be gardening, reading a good book or magazine, painting or sculpting, getting a mani/pedi, going for a scenic drive or perhaps it is even more youth-oriented such as diving into a new pile of snow or ice skating or walking along the beach collecting seashells (my favorite). Make sure you only list things you love that are just for you – if you wrote down exercise but it’s something you feel you have to do rather than love to do, it’s NOT Me Time.

Why Monday?

Monday is part of our cultural DNA – for most of us, it is the start of the work week, the school week and we feel renewed energy to start something after a nice weekend break. The nonprofit Monday Campaigns was founded in 2005 in association with Columbia University, Johns Hopkins University and Syracuse University in order to apply marketing best practices to public health challenges. According to the research, the Monday Campaigns show a projected 74 percent of American adults over age 25 believe giving healthy intentions a Monday start will make them more lasting throughout the week. Part of The Monday Campaigns is Caregiver Monday, a specific campaign targeted to helping the nation’s caregivers take care of themselves.

“Day in and day out, millions of caregivers give so much of themselves caring for their loved ones that they often neglect their own health and well-being,” says Sid Lerner, founder and chairman, The Monday Campaigns. “Caregiver Monday encourages them to use that first day of each hectic week as their recharge day, to refocus on their own condition to better serve their dependent parent, child or spouse.”

Your Me Time Monday Checklist

Plan B dreamstime_m_21540655 (2)1. Write it down.  Put your Me Time Monday activity on sticky notes. Post these notes on your refrigerator, your bathroom mirror, in your wallet, on your smartphone, on your car dashboard – anywhere you will see the words every day.  These are love notes to yourself.

 

 

 

ca. 2003 --- Baby Steps --- Image by © Royalty-Free/Corbis2. Take baby steps. If your Me Time is taking a 30-minute walk to enjoy nature and outdoors (a great stress reliever), start with buying new walking shoes on your first Monday (it’s all about the shopping for me).

The following week it may be getting just a few minutes to walk around the block – you don’t have to achieve 30 minutes on Week 1 – just get started.  Once you get in the groove you will find you plan your Me Time because of the comfort it brings you.

If you miss a week – don’t beat yourself up.  Evaluate what derailed you and see if you can eliminate the obstacle the next week.  What’s great about Me Time Monday – you have 52 chances to stay on track! And you don’t have to do your activity on Monday – just use Monday as your “check in” point for the week – do you know what you are going to do and how to find that time?

Train tracks dreamstime_m_10769462 (2)3. Track your progress. Put a little heart on your weekly calendar when you do your Me Time or tell a friend who can be your cheerleader about your plan and let them applaud your weekly progress (and help give you a caregiving break so you can get your Me Time – see Lotsa Helping Hands as a great way caregivers can get help to get a break).  Getting reinforcement – whether through a friend or seeing a lot of hearts on your calendar will keep you motivated.

 

Mountain Top dreamstime_m_20665256 (2)4. Live in the moment. When you are practicing your Me Time take a few minutes to really feel it. Close your eyes and put your imaginary remote control on “Pause.”  Feel everything around you. Stop and try to use each of your senses in what you are doing.  Can you see yourself happier?  Do your shoulders relax? Do you feel a little more refreshed? Do you hear the sounds around you?  Do you smell the wonders of your environment? Do you feel re-energized so you can keep caring for everyone around you because you took a little Me Time? Sensory cataloguing is a great way to revisit your Me Time and re-wire your brain to crave that Me Time so it becomes essential to your well-being.

 

Remote Control dreamstime_m_6705349 (2)Now push “Play” on your imaginary remote control and let your Me Time Monday reality show begin!  To view the Me Time Monday videos including how celebrities find their Me Time – visit our Caregiving Club YouTube channel.

 

 

 

 

Note:  This blog is adapted from A Cast of Caregivers – Celebrity Stories to Help You Prepare (sold on Amazon, Barnes & Noble and other online retailers and booksellers).

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January – Financial Wellness Month

When it comes to caregiving, the costs can sometimes be emotional, physical and financial. This month our blog articles focus on how to avoid the caregiver cost drain with tips on planning ahead and finding resources to help you save without sacrificing the quality of care.

Read what financial guru Suze Orman learned about long term care costs

Give Thanks by Joining the Movement to Stop Alzheimer’s

Proud Supporter Badge (2)This Thanksgiving holiday, I am asking my friends and family to join me in helping to stop an epidemic we are all facing:  Alzheimer’s disease.

I was named one of the Top 10 Alzheimer’s online influencers by Sharecare and Dr. Oz and I am passionate about advocating and educating about Alzheimer’s disease. I recently attended an educational event sponsored by Banner Alzheimer’s Institute (BAI), a non-profit organization that has developed the Alzheimer’s Prevention Initiative (API) and Registry.  As a paid sponsor for this effort, I want to share some information about Alzheimer’s disease and how you can join the effort this November – which is National Family Caregiving Month and National Alzheimer’s Awareness Month – to make a difference.

Do You Know?

Today, more than 5 million Americans have been diagnosed with Alzheimer’s – a number that will triple by 2050.  In fact, every 68 seconds someone new is diagnosed with Alzheimer’s disease.  And this diagnosis is not just for the person affected.  It is a diagnosis for the entire family, especially the 15 million Americans – 1 in every 10 U.S. adults – who care for a loved one with Alzheimer’s or dementia.

The myth is that if you have not experienced Alzheimer’s in your family health history, you don’t need to worry about being affected.  Yet our own longevity is working against us. As we live longer – 1 in 50 baby boomer age women will live to age 100 – and experience medical breakthroughs and new technology, we can diagnose this disease earlier where steps can be taken by families to address the challenges Alzheimer’s creates.

According to Jessica Langbaum, PhD., principal scientist at BAI and associate director of API, “Family history can increase the risk of developing Alzheimer’s disease.  However, familial Alzheimer’s disease is rare – less than 1 percent of new diagnoses are caused by genetic mutation.  If you do not have a family history of this disease, it does not mean you won’t get Alzheimer’s.”

For families the diagnosis can be devastating – emotionally and financially. The cost of in-home care for someone with Alzheimer’s averages $76,000 a year and special memory care facilities – assisted living and other senior living homes where staff is specially trained on dementia issues – are growing in numbers but can typically cost more than $100,000 annually and many families experience wait lists for residents. We often believe long term care insurance benefits or Medicare will cover all these costs but that is not always the case and the families are left with financial challenges that can be overwhelming.

Another myth is that we don’t need to worry about developing Alzheimer’s until we are well into our golden years.  While the statistics show that one in every two adults over age 85 will develop dementia, five percent of those with Alzheimer’s were diagnosed as “early on-set” – people in their late 30s, 40s, 50s and 60s.

In fact, just this year, I have interviewed two people who were diagnosed at age 51 and 52 and I met a woman at a conference who was diagnosed at age 38.  The silver lining is that these individuals, along with their families, have time to plan ahead for the impact the disease will have on their lives – an advantage many facing the disease do not have.

Finger Purple String dreamstime_16285962 (2)According to the Alzheimer’s Association, about half of people with Alzheimer’s disease are undiagnosed.  And many Americans do not know the difference between normal memory loss that comes with aging or stress versus concerns over dementia.  The Alzheimer’s Association has developed the 10 Warning Signs of the disease and explains the difference. For instance, forgetting where you put your keys is normal memory loss; putting your keys in the freezer is not.  Not remembering the names of all 10 of your grandchildren is normal aging memory loss; not remembering names for common daily items such the word for “toothbrush” is not.

The Call To Action – Join the Registry to Stop the Epidemic

This November while we gather with family and friends for Thanksgiving dinners, stop and look around the table.  More than likely, someone at the table will develop dementia in their lifetime.

Alzheimer’s is the 6th leading cause of death and the only disease on the Top 10 list of killers – along with heart disease, cancer and others – which cannot be prevented, slowed or cured.

By joining the Alzheimer’s Prevention Registry (www.endALZnow.org), you become a key player in helping to find a cure for this disease.  When you register (which is no cost) you will receive:

  • Updates on research, clinical trials, news, brain health information
  • Become eligible for potential study participants for prevention research.  Many clinical trials are not just about people who are ill or diagnosed with the disease. Researchers need 10-20 times the participants to screen for participation and API’s research focuses on people without symptoms. Many research and studies are abandoned because they do not meet their recruitment goals.
  • Some of the research participants simply fill out online surveys which take a few minutes. Others can elect to join in-person studies. It is your choice – there is no obligation to participate in any of the studies.
  • The only information you provide is your zip code and answer whether you have a family history of Alzheimer’s disease.  All information is kept strictly private and confidential and not shared. By joining the registry, you simply say you want to receive information about new research and studies.  You will be asked if you want to join any future studies and can decide at that time if you are interested.

Join Me

Proud Supporter Badge (2)I joined the Alzheimer’s Prevention Registry to help stop this epidemic.  I am asking you to share the link and information with your family and friends – via Facebook, email or otherwise – and help us achieve the goal of registering 250,000 people.  BAI is a non-profit organization dedicated to research, treatment and the creation of new standards of care for patients and families. They also bring together international institutions on scientific collaborations. You can follow their efforts on Twitter @AlzRegistry using the hashtag #endAlznow.

Here is what a couple of other registrants have said about why you should join:

“I joined the Registry in honor of my husband, who was diagnosed with early-onset Alzheimer’s at age 50. I can’t bear the thought of one of my sons developing this disease also,” says Dawn Revere.

“Being a caregiver for my mom really taught me the true meaning of love. Taking care of her and being her advocate and daughter at the same time really showed me what love is all about. I joined the Registry to fight against a disease that robbed my mom of everything,” shares Cynthia Manly.

Have a wonderful and safe Thanksgiving.

About Sherri Snelling

Sherri Snelling is CEO of the Caregiving Club and author of of A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, which includes several celebrity stories of caregivers of those with dementia as well as Alzheimer’s information and resources.  She was named #4 to the Top 10 list of Alzheimer’s influencers online by Sharecare and Dr. Oz and is a blogger and writer for the Alzheimer’s Association as well as Huffington Post, Forbes, PBS Next Avenue and USA Today.

Social Media Dangers for the Modern Caregiver

Facebook dreamstime_15673207 (2)In this age of sharing our lives on social media, caregivers struggle with how much or how little information to divulge. In her article for Forbes and PBS Next Avenue, Sherri Snelling talks about her personal caregiving experience with a social media assault – read about the Social Media Dangers for the Modern Caregiver.

The Health Risks of Being “The Good Daughter”

 

Grandmother with adult daughter and grandchildIn this interview for Caring.com, Sherri talks to a caregiver who was a good daughter, a good niece and good mother – caring for everyone around her but neglecting her own health needs.  Studies show caregivers typically put their own health at risk and are twice as likely to develop chronic illness earlier in life due to the prolonged stress of caregiving.

Read Sherri’s articles on how caregivers can:

Use Me Time Monday to Stay Healthy and Happy

7 Magnificent Ways to Avoid Burn-Out

Caregiver Stress is No Joke

 

Joan Lunden’s Coast to Coast Caregiving Coverage

I first met Joan Lunden on the set of a special TV program Joan hosted for RLTV, “Taking Care with Joan Lunden,” where Joan interviewed me as an expert on caring for an older loved one at home.  I turned the tables on Joan and interviewed the famous interviewer for this story which is excerpted from my book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

Golden Girl

lunden_joanFor 17 years throughout the 1980s and 1990s, she woke us all with “Good Morning America” as co-host of ABC-TV’s national morning show.  But, it was only six years ago that Joan Lunden, the sunny, blonde, California-born and raised TV journalist received her own wake-up call.

She remembers it like it was yesterday.  In her words, “It 100 percent shook me up.”  It was back in 2005, that her brother Jeff, who had long suffered from Type II diabetes, passed away.  Joan had been caregiving for both her ailing brother as well as her then 87-year-old mother, Gladyce.  While her brother suffered the ravages of diabetes – blurred vision, headaches, operations on hands and feet, etc. – her mother, Gladyce suffered from signs of dementia and had several mini strokes over the years.  For both their safety and Joan’s peace of mind, she had purchased a condominium in the Sacramento, California area where Joan had grown up and paid for them both to live there together.

Meanwhile, Joan lived across the country with her home base on the East Coast where she was raising two sets of twins under the age of 10 with her second husband and playing “empty nest” mom to her three older daughters from her first marriage.  In addition, she had not slowed down since leaving “Good Morning America” in 1997, traveling the country as a spokesperson on healthy living, authoring several books, and managing a growing business focused on healthy living.

Joan was both a Sandwich Generation caregiver – one of the 24 million Americans caring for children and a parent simultaneously and thus, sandwiched between caregiving duties – and a long-distance caregiver.  More than eight million caregivers care for a loved one long distance – whether they are two hours away or across the country as in Joan’s case.  This makes caregiving more difficult – you are not there every day to see the small things which can be warning signs that something is changing and your loved one needs more care.

Sunrise, Sunset

Although she mourned her only brother’s passing, it was not his death that rocked Joan’s world.  It was the realization that her mother’s dementia was so much worse than even she knew.

“My mom had ‘sundowners,’ a typical symptom of dementia and Alzheimer’s where the person becomes irritated, irrational and sometimes violent as the sun is setting,” explained Joan.  She also showed signs of paranoia especially after Joan moved her mother into an assisted living facility.

“Mom was afraid to go downstairs and visit with the other residents, they frightened her and yet she could not tell us why,” said Joan.

Joan soon realized that she had been overlooking her mother’s real needs and issues. “It is easy to overlook things when you live far away from your loved one,” says Joan.  “They put on a happy face and they seem fine and you may see small things but you want them to be fine.”

Alzheimer’s and dementia, which affects more than five million Americans today, can also be a sneaky disease.  An older loved appears relatively healthy and fine physically but is suffering from dementia that can cause sudden mood shifts or other emotional problems, especially frightfulness and forgetfulness.  It is only through the activities of daily living that one sees how critical proper care becomes and Joan had not seen this before.

Joan encountered what I call “Goldilocks Syndrome” trying out several facilities before finally finding the right environment for her mother’s health needs and happiness. After Gladyce suffered several falls breaking her foot, her rib, then hitting her head and needing staples did Joan realize a specialized care facility would be necessary.  The social worker at the hospital where Gladyce was treated for her falls put Joan in touch with a senior care facility advisor.  The advisor assigned to Joan assessed Gladyce’s needs and then took Joan and Gladyce on a tour of several facilities that she thought would work.  They settled upon a small residential care facility with just six residents in a large home setting.

Using Her Journalistic Instincts – Tracking Down Leads

Glady and Joan 93 Bday 3 (2)When Joan’s brother passed away, it was left to Joan to decide if her mother could continue living independently with some personal care assistance from an outside agency or a professional.  In addition, Joan needed to go through all the paperwork for her mother that her brother had been handling.  Joan, her brother and her mother had been a threesome as Joan grew up since her father was tragically killed in a plane crash when Joan was only 14.

Faced with a mass of paperwork and a lot of missing documentation, Joan got down to doing what she does best – investigating.  As a journalist you have to be inquisitive and look for clues to the real story.  In Joan’s case she had to search through mountains of paperwork and become an amateur genealogist to be able to help her mother.  She could not access her mother’s bank account, she could not find a social security card or driver’s license, and she had nothing to go on except she knew her mother’s maiden name.

An elder law attorney that Joan had secured advised her to find her mother’s birth and marriage certificates.  This would be verification for the Social Security office to issue her mother a duplicate card since Joan could not find the original.

In addition, Joan would have to have her mother authorize her as a co-signer on the bank account and grant her access to health insurance and other critical information that has privacy protection.  Thank goodness in Joan’s case her mother was still lucid enough to authorize her daughter to help – in many caregiving situations the loved one can no longer provide that authorization and it becomes a costly and time-consuming burden for the caregiver to get this done.

“You think you know your parents but then something like this happens and you realize maybe you do not know as much as you should,” says Joan.  This is especially true when it comes to verifying records and making decisions on their behalf.

In retrospect, Joan says, “I wish I had the family meeting before the crisis in care happened but I am typical.  The crisis happened and all of a sudden you have to become an instant expert at so many issues around elder care.”

Joan’s advice to all caregivers, current and future, is to take a page from her long-running morning show career.  “Have the conversation, start the dialogue, do the interview with your loved one,” she says.  “And, most importantly, don’t stop communicating – talk to your loved one as often as possible, talk to their doctor, ask questions, talk to the facility administrators and health care professionals – stay on it .  It is the most important tool you have – it keeps you connected to your loved one and to the essential care needs they have.”

Joan recently lost her mother, who was known as “Glitzy Glady” at the memory car residential facility she called home.  Joan is following in her energetic mother’s footsteps. As the poster gal for 60 being the new 40, Joan says she is healthier today than she has ever been in her life and that her caregiving experience has given her new insights into the message of “prepare for the worst and hope for the best.”  Her inspirational attitude is captured in a book she co-authored about caregiving stories, Chicken Soup for the Caregiver’s Soul.