December is a time of reflection – looking back over the last year and forward to new beginnings. Wishing all caregivers peace, joy, health and balance in life. And, although we may encounter many challenges as caregivers, it is a wonderful life!
The physician-assisted end-of-life debate received a jolt the last few weeks as an unlikely heroine for the Death With Dignity movement emerged in the 29-year-old terminally ill brain cancer patient Brittany Maynard. Given the choice of a painful death where her seizures will multiply, intensify and last longer, her memory loss will become permanent and her excruciating headaches will rob of her of any peaceful, pain-free moments, Maynard chose to end her life her way. Along with her newlywed husband and her mother and stepfather, Maynard moved this summer from Northern California to Portland, Oregon, one of only four states where adults with terminal diagnoses can legally determine when and how they will die.
The death with dignity movement began back in the early ‘90s in Oregon when a ballot measure passed and eventually became law in 1997. The definition of death with dignity is that mentally competent adults who have a terminal illness may request a doctor prescription for life-ending medication that will be self-administered. It was around this same time that Jack Kervorkian became a lightning rod for the controversial act of euthanasia where in his estimation he helped 130 people in physician-assisted suicide. To date, Oregon, Montana, Washington and Vermont have state laws protecting death with dignity decisions and legally allowing participating physicians to prescribe lethal doses of medication to terminal patients for self-administration. New Mexico courts have upheld cases although appeals are in progress and several other states have pending death with dignity legislation including Connecticut, Hawaii, Kansas, Massachusetts, New Hampshire, New Jersey and Pennsylvania and a measure is set to be introduced in Colorado in January.
Over the last 20 years, national Gallup polls have shown the majority of Americans – 70 percent – support death with dignity rights for individuals. And while end-of-life conversations are difficult, especially for adult children serving as family caregivers for their older parents, a Pew Research study found 35 percent of Americans have actually put their wishes in writing.
In order to ensure wishes are carried out, it is not just enough to discuss it with family. Having a legally binding document, typically a living will, durable power of attorney for medical decisions and a do not resuscitate (DNR) or do not intubate (DNI) order documents are required. One document that is lesser known but extremely powerful and helpful to caregivers is called The 5 Wishes. More than 18 million Americans have created a 5 Wishes document that meets legal requirements as a living will in 42 states. The document outlines: 1) Who you want to make your health care decisions if you are unable; 2) The type of medical treatment you want or don’t want; 3) How comfortable you want to be; 4) How you want people to treat you; 5) What you want your loved ones to know.
Trends in health care show as a nation we are learning how to die with dignity. With the increase in hospice care at home or in long-term care facilities, more than half of the 2.5 million people who die every year can receive compassionate care where a team of health care and spiritual experts help the patient and family members cope with end of life. But that does not mean end-of-life wishes are overlooked in the hospital setting where the Centers for Disease Control and Prevention report one-third of all deaths occur.
In May, several Los Angeles area hospitals and health care providers endorsed some groundbreaking guidelines on how to facilitate patient end-of-life wishes. The coalition included: Cedars Sinai Hospital, Healthcare Partners Medical Group, Kaiser Permanente Southern California, Keck Medicine of USC, Los Angeles County+USC Medical Center, Memorial Care Health System, Olive View-UCLA Medical Center, Providence Little Company of Mary Medical Center Torrance, Providence Trinity Care Hospice and UCLA Health System. The guidelines require doctors, normally only schooled in saving lives, to explain clearly to patients when a medical treatment under consideration, such as feeding tubes, intubation or dialysis may deprive the person of life closure or preclude a peaceful death. The guidelines are the compassionate care California health care organizations are striving to achieve where patients have the chance to say to a loved one, “I love you,” “Forgive me,” or “Good-bye” one last time.
When Maynard’s April YouTube video about ending her life on her terms went viral and recently surpassed 9 million views, it was because a youthful, vibrant, newly married woman was deciding how her life would soon end. But dying at 29 or 99 should be the same. Maynard said at the time, “I had no choice to be diagnosed with a brain tumor but I can make a choice how I spend my last day.” For Maynard that means spending it surrounded by family in her bed at home and free of terrible pain. She was upset that people would see her choice as suicide calling that label for her situation “really unfair.”
For the person with the diagnosis, the dilemma is how not to have death affect loved ones in devastating ways. Maynard’s argument for choosing death with dignity is to spare her husband and parents the struggle of watching her in pain, losing her quality of life day by day, hour by hour.
Although Maynard released a second video last week explaining that while her health continues its rapid decline, she can still smile and laugh with family and friends and that she may let the November 1 chosen date pass, as I write this article the news reports Maynard has in fact taken her last breath in the arms of her husband and mother.
Maynard’s mother, Debbie Ziegler, had said she would be “honored” to become a caregiver for her adult daughter as she loses her faculties. Ziegler would have lovingly bathed, fed and diapered her adult daughter as she had when she was a child. But in the end, Maynard’s mother said the decision is her daughter’s.
“It’s not my job to tell her how to live and it’s not my job to tell her how to die,” said Ziegler on the video. “It is my job to love her through it.”
It is this gift of choice about how and when we will die that may be most precious to all of us and the gift which family caregivers can become the partner in fulfilling.
Caregiver Monday is an initiative from the non-profit Healthy Mondays organization that promotes a weekly dose of caregiver self-care to stay strong — physically and emotionally — as a caregiver. Check out Caregiving Club’s Me Time Monday videos (in the right hand sidebar) which support the Caregiver Monday campaign.
To read more about Me Time Monday, click on these article links:
Caregiver RX for Stress: 3 Steps to Me Time Monday for the Huffington Post
Watch the Me Time Monday video tips on Caregiving Club’s YouTube channel
The largest volunteer health care workforce in our country are the nation’s 65 million caregivers. They carry the physical, emotional and financial responsibilities on their shoulders. This month we celebrate all of our nation’s caregivers.
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.
Both men and women throughout their lives should have a BMI measurement of 18.5 – 24.9. Here is how to calculate yours:
- Take your weight
- Divide it by your height in inches
- Divide this new number by your height in inches again (yes, a second time)
- 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.
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
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).
I 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.”
As 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.
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
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.”
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
We 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.”
In honor of National Friendship Day – August 3 – we celebrate the special caregiving friendship of Alana Stewart and Farrah Fawcett. Here is their story…
Some 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
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.”
In 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.
When 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.
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.
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 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).
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
Last 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 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.
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.
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.”
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.
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.”