Can Caregiver Weight Contribute to Breast Cancer?

Feet on Scale dreamstime_792851 (2)It has long been suspected weight gain is a slippery slope to breast cancer risk.  Now recent 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’re 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 diabetes and heart disease as well as breast cancer.  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 weight over the years, did not show the increased risk in developing breast cancer.  In a separate study published earlier this year 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, childbirth weight gains may never completely come off (just ask Jessica Simpson how tough it is) and what researchers are calling busy life syndrome takes over – fast food nutrition, lack of gym time and restless nights with fewer hours of sleep.  And studies show caregivers have an even increased risk for neglecting their own health and wellness needs than the general population.

While some pounds may have crept on, Dr. Anne McTiernan who led the Fred Hutchinson study believes just 10% 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 didn’t 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 5 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 1 year.

2. 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!

3. 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.

4. Sobriety Test.

A NAC study found 10 percent of caregivers use alcohol to cope with their stress but drinking more than 1 glass of alcohol per day increases your breast cancer risk by 7 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.

5. De-stress. 

Stress is the No. 1 complaint for caregivers.  But stress releases a hormone called cortisol which can lead to belly fat.  Finding ways to de-stress whether it’s meditation, breathing exercises, yoga or finding outlets to let off steam such as support groups or just 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.

 

Photo credits: All Dreamstime contributors: Pixelbrat, Maxexphoto, Valua Vitaly, Nress, Blasbike, SlavenkoVukasovic

Joan Lunden – Breast Cancer Warrior on Caregiving Legacies

This article originally appeared on Next Avenue

When she stepped out onto the stage at a recent AARP convention, Joan Lunden looked as sunny and radiant as she always has as a 17-year co-host on “Good Morning America” in the ‘80s and ‘90s and more recently as the healthy living guru and businesswoman who inspires everyone she touches.

She came to talk to the gathered baby boomer and beyond crowd about caregiving – a role she had played with her mother whom she lost in 2013. But with bright eyes and a perfectly coifed hairstyle, Lunden said she wanted first to address “the elephant in the room.” A month earlier, Lunden, age 64, had gone public with the news that she was one of the 232,670 new cases of breast cancer among women in the U.S.  She announced she had just finished 12 weeks of chemotherapy and would enter another round of the cancer-killing therapy in a couple of weeks. As she smiled at the supportive crowd, she seemed strong and vulnerable at the same time.

Lunden’s life had been a series of triumphs and challenges. As a young girl, she lost her father, who was a cancer surgeon, in a plane crash. As she began her career as a TV broadcast journalist, it was during this period she had become caregiver to her brother, who had health complications from type 2 diabetes, and her aging mother who was eventually diagnosed with dementia.  She says what she realizes now that she did not at the time, is that caring for her brother and mother simultaneously over 30 years ago is when her caregiving journey began.  After GMA, she became a health advocate, writing books, making speeches and continuing to bring her California-girl sunshine to the masses, all the while crisscrossing the country from her East Coast home to the brother and mother who needed her care on the West Coast. After divorcing her first husband, she found love again with current husband, Jeff Konigsberg, only to face infertility issues and opt for surrogacy to have her last four children (two sets of twins who joined Joan’s three older daughters from her first marriage).

NewsletterAdI met Joan in 2010 when she interviewed me as a caregiving expert on a special RLTV program called “Taking Care with Joan Lunden.”  Since then, I have interviewed her a few times over the years and am always amazed at her boundless energy, her “you can do it” attitude and her genuine interest in people and their lives. Although her life reads like a Lifetime movie, the up and down Lunden roller-coaster has never impacted her exuberance. Joan credits her parents for her optimism. She said, “My mom was the ultimate positive thinker and my dad was a doer.”

It is this positive outlook that brings Joan a lifeforce which I know will help her conquer breast cancer and is the same prescription that made her a model caregiver.  What she learned as a caregiver is now empowering her as a cancer warrior.

For instance, Joan told me she had guilt over not moving her mother closer to her while her mom lived her last years with dementia. Eventually, Joan realized that removing her mother from her comfort zone of the California sunshine and dear friends to colder climes on the East Coast, would not have solved the problem. Joan was traveling constantly during those last years and would not have had much more time to care for her mother even if she had lived down the street. The staff at the California dementia care home where she eventually moved her mom reminded Joan that the periods between visits were inconsequential to someone with dementia who has lost ability to understand space and time.

Joan also expressed guilt over being diagnosed with breast cancer. Advocating for healthy eating much of her adult life, she says she felt that somehow she must have done something wrong along the way. Joan realizes now she was paying lip service to reading food labels – ignoring the real information.  She said, “The American diet is the best fertilizer for growing cancer.” Today Joan eats clean and has eliminated wheat, dairy and sugar from her diet and advocates for avoiding GMO foods (genetically modified organisms).

Having the strength and energy to battle cancer is the same diet plan caregivers need to have the stamina to keep caring for a loved one. And letting go of guilt is the ingredient for a strong emotional core during caregiving challenges.

Joan also looks for the silver linings in life – a lesson all caregivers need to push through some difficult and overwhelming feelings. When it came to dementia and caring for her mom, Joan realized she had to let go of trying to bring her mother back into Joan’s world. Instead Joan had to step into her mom’s world. When she showed her mom photos of her grown daughters, her mother would express confusion or lack of interest in not knowing these people. But when Joan swapped those photos with some of her and her brother as children and included some of her parents as young newlyweds, her mother’s face would light up. Along the way, Joan learned new things about her parent’s early life that she felt she would have missed if her mother did not have the cognitive impairment that made them both refresh memories from long ago.

When it comes to cancer, Joan said her silver lining is in recognizing the irony of losing her adored father who just happened to be a cancer surgeon. His plane crashed returning from a conference where he was training other cancer doctors.  When Joan was first diagnosed, she pondered whether or not to go public with the news. As she told the AARP crowd, “I thought it was ridiculous I could stay private with this news – it would break somehow. But my second thought was I had always wanted to follow in my dad footsteps and become a surgeon but scalpels and blades where not my thing. However, my dad gave his life training others about cancer – now I can follow his footsteps and do the same thing.”

Joan Lunden People Magazine Oct 2014As I look at the beautiful, bold, bald cover photo of Joan on this week’s People magazine, it is clear she is our teacher, our healer, our cheerleader and our role model in caregiving and in caring for ourselves.

Sherri has interviewed Joan several times over the years and included Joan’s caregiving story in her book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

Caregiving Club’s Top 10 Lists

CC Top 10 ListsDavid Letterman made the “Top 10″ lists famous and Caregiving Club has decided to take a page from Letterman’s book to announce our year-long Top 10 Lists for Caregivers.

Each month, we will choose a different topic and provide you with the tips, resources, information we feel is best on that particular topic.

View all the Caregiving Club Top 10 Lists below:

JANUARY – Top 10 Caregiving Cost-Savings Tips

Mars vs. Venus – Do Men and Women Differ When It Comes to Caregiver Stress?

In the movie, When Harry Met Sally, we contemplated, “Can men and women really be friends?” When it comes to caregiving our question is, “Are men and women different in dealing with caregiver stress?” According to researchers at Bowling Green State University the answer is a definitive “yes.”

Bulldog Miffed Spouse dreamstime_m_7663328 (2)When it comes to coping with caregiver stress, men and women tend to take a Mars vs. Venus approach.  Stress is one of the biggest challenges caregivers face and even more so for those 15 million Americans caring for an older parent or spouse with Alzheimer’s disease or dementia.  Several reports and studies in the last several years have found chronic stress and depression can lead to health risks for caregivers and dementia caregivers may be at an even greater risk.

According to the Alzheimer’s Association, 60 percent of dementia caregivers rate their stress levels as very high and one-third also report depression.  A UCLA study found the depression statistic for dementia caregivers may be closer to 50 percent.  Often, dementia caregivers encounter additional physical and emotional burdens beyond the typical caregiver activities of bathing, feeding, dressing or administering medications. Dementia caregivers may face a loved one with memory loss, tendency to wander, sundowning, violent outbursts and other issues which take a significant emotional toll creating more physical and psychological stress for the caregiver.

Mars vs. Venus Caregiver Stress

How are men and women are different when it comes to dealing with stress?  The Bowling Green State University research study looked at men and women who were caring for an older parent and how they differ in coping with stress.  The study found while women are more natural nurturers, they also worry more about their caregiving performance.  The anxiety of analyzing how they are handling caregiving and whether their loved one is happy with the decisions they have to make creates constant stress for caregiving daughters.

Caregiving women tend to carry around the anxiety of their caregiving performance creating chronic stress. And this can lead to severe health issues later in life. In fact, a Commonwealth Study found caregivers who suffer from chronic stress are twice as likely as the general population to develop chronic illnesses earlier in life. Heart disease, cancer, diabetes, arthritis, etc. are the end result if women cannot find ways to manage the daily stress of caregiving.

For the men, the approach is sports-driven.  Sons caring for an older parent take a block and tackle approach – they have a list of tasks they must perform and they gain satisfaction on accomplishing these goals without worrying about their performance.  This led the researchers to conclude the men who are caregivers actually experience less psychological stress.

In addition, the researchers found the men who were caregivers were given more praise by others.  The conclusion is society still sees women as the natural caregivers and thus, does not single them out for praise in providing care.  The men who become caregivers are seen as rare and thus acknowledged more positively for stepping into a caring role.

Ladies, it’s time to take a page out of the men’s caregiving playbook – let the stress float away.

The Stress Inside

stress imageWe know ongoing stress can lead to burn-out as well as multiple health problems – headaches, back pain, insomnia and even hypertension leading to serious health risks such as heart attack or stroke.  A recent study conducted by Umea University in Sweden found psychological stress in middle age can also be a cause dementia later in life

The Centers for Disease Control and Prevention (CDC) report 90 percent of doctor visits are stress-related and a National Alliance for Caregiving study of Alzheimer’s caregivers and health risks found dementia caregivers visited their physician’s three times as often as the general public and increased their health care costs by $4,766 per year.

The difficulty is stress is often invisible. It is not like a rash or broken limb which is an obvious sign of a physical health problem.  One test for stress is this:  Do you have your tongue pressed against the roof of your mouth?  If so, this is a sign of chronic stress you may not realize you have.  Visit the Alzheimer’s web site for a specific test for caregiver stress.

There is also the stress from social isolation and shame. Despite the increased awareness of Alzheimer’s disease, the stigma of dementia remains. According to Alzheimer’s Disease International’s World Alzheimer Report 2012, 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.  This extends to their family caregiver who follows their loved one’s lead in keeping the diagnosis hidden.

Finding ways to eliminate the stress inside will lead to a healthier caregiving life. (Read my Huff Post blog on the “Eliminating Caregiver Stress.”

Caring for a Best Friend – On Wings of An Angel

In honor of National Friendship Day – August 3 – we celebrate the special caregiving friendship of Alana Stewart and Farrah Fawcett. Here is their story…

farrah, alana from book coverSome friendships last a lifetime.  And then there is Alana and Farrah.   For Alana Stewart and the late Farrah Fawcett their friendship continues even though Alana lost her dear friend of more than 30 years in 2009.  Theirs is a true love story – it’s about sharing your innermost secrets, having each other’s back, laughing when you want to cry, taking the good with the bad, never giving up on each other.  This kind of friendship is rare.

When it comes to caregiving, many friends will bake a casserole, visit you in the hospital or help by picking up your kids at soccer practice.  Not many will put their own lives on pause for almost three years to chase promising new cancer treatments half way across the world, be your advocate with health care professionals, hold your head and hand while you spend hours with nausea from chemotherapy.  That is love.

When I told Alana how rare her friendship with Farrah is, she responded, “I didn’t think it was so rare, it was just the thing to do.”  And when Farrah asked Alana to be with her in Germany and the U.S. while she sought treatment, there was no question in Alana’s mind that she would be there for her friend.

Over the course of three years, from Farrah’s anal cancer diagnosis in 2006 to her death in 2009, Alana was by Farrah’s side.  She made several trips with Farrah to Germany to seek new treatments not yet approved in the U.S.  Alana recalls how hard it was to watch her friend go through painful surgeries, chemotherapy and radiation treatments that were helping her fight the cancer but were also beating down her immune system making the athletic Farrah so weak.

“Farrah had such amazing courage and faith, we never even talked about the possibility of these treatments not working,” says Stewart.

As is typical in caregiving situations, Alana became Farrah’s protector.  For instance, she ensured no paparazzi caught a photo of Farrah in a wheelchair.  Alana explains this wasn’t vanity on Farrah’s part it was her not wanting other cancer patients to feel she was losing the fight or that she was weak – she wanted to be strong for the people who had written her letters about being their inspiration.

Alana also became Farrah’s advocate with various health care professionals.  While the choices Farrah made for her treatment were all her own – Alana took notes and asked a lot of questions and at Farrah’s request, documented the conversations on video that became an Emmy-nominated NBC documentary, “Farrah’s Story” that aired one month before Farrah’s passing in 2009.

“It is a really rare friend who steps in like a family member to be a primary caregiver,” says Dr. Rosemary Laird, medical director at the Health First Aging Institute in Florida.

One thing Alana and I spoke about was the healing power of friendship.  “There are a lot of studies about people who have love in their lives who have a better chance of recovery,” says Stewart.  “Love is a very healing energy…knowing someone is in your corner as you battle an illness is really important because it makes you feel like you are not going through this alone.”

When it comes to the power of friendships, a book called Connected:  The Surprising Power of our Social Networks and How They Shape Our Lives by Nicholas Christakis and James Fowler, illuminates how friendships can hold sway over us (and us over them) in both good and bad ways.  This influence can extend to three degrees of friendship and according to the authors, having a first-degree friend who is happy increases the likelihood of your happiness factor by 15 percent.

Healing Herself By Helping Others

alana-stewart-headshot-002 (2) from AlanaOne of the things that Alana promised Farrah is that she would carry out her wishes to continue the work of the foundation Farrah had established to help those families facing cancer.

Today, Alana is president of the Farrah Fawcett Foundation, a non-profit organization dedicated to exploring non-traditional methods of cancer research and clinical trials, such as gene therapy and targeted therapy, and providing early detection and preventative programs.  If Farrah could not find the cure in her lifetime, she wanted to ensure the foundation created in her name would do it for others after she was gone – and Alana is the keeper of that flame.

The foundation hosts conferences with leading cancer researchers and experts around the globe.  Recent gatherings have focused on chemo sensitivity testing.  The foundation is also dedicated to helping caregivers and families directly.  The Farrah Fawcett Patient Assistance Fund helps families struggling with financial challenges while going through cancer treatment.  “Whether it’s meals or hotel bills or even parking costs for every day when you are at a medical center while your loved one gets treatment, our program provides direct financial help to those families in need,” says Stewart.

Being at the helm of the Farrah Fawcett Foundation has helped Alana keep Farrah’s memory and legacy alive.  Alana’s message and her mission with the foundation is what Farrah wanted – to give back to the world, something Alana says she learned from the experience of caring for Farrah.  In the end, Alana just wants her friend to be proud of the foundation work that carries her name.

Stewart says one of the other things she learned about her journey with Farrah was the importance of doing something for another person.

“Getting out of yourself and your own problems and just showing up for someone.  What I learned is to try to appreciate every day of your life because it can take a turn and change in a heartbeat,” says Stewart.  “You also learn to value the friends in your life and not take love and families for granted.”

My Journey with FarrahIn Alana’s book, My Journey with Farrah, Ryan O’Neal, Farrah’s longtime love and companion writes, “The bond between women friends is all-powerful and not to be taken lightly.  But the bond between Alana and Farrah is like nothing I’ve ever seen between two women.  They grew together like vines.”

You can follow the activities of the Farrah Fawcett Foundation on Facebook and Alana Stewart on Twitter at AlanaKStewart.

More of Alana and Farrah’s story can be found in Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

August – Relaxation and Vacation

Hammock dreamstime_m_4985601 (2)Two things caregivers rarely get to do: Relax and Take a Vacation. Our blogs this month help caregivers find ways to do both as we celebrate summer getaways and getting away from caregiver stress on National Relaxation Day August 15.

6th Annual CARE-Y Awards

6th Annual CARE Y Awards TVWhen it comes to the small screen, our caregiving “real” lives are played out in “reel time” by some stand-out shows that focus on one of our most important roles in life – caring for a loved one. Join us on Monday, August 25 as we reveal our choices for best “real life” and “reel life” caregivers – announced the same day as the 66th Annual Emmy Awards.

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.


CastofCaregivers Cover FINAL

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. 

CastofCaregivers Cover FINAL

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

Groovin Puppy dreamstime_3978556 (2)

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.

CastofCaregivers Cover FINAL

 

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

DreamFoundationSquare

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.

CastofCaregivers Cover FINAL