Still Alice May Be the Movie That Sparks the Alzheimer’s Movement

This article was originally published on PBS Next Avenue

Still Alice Julianne MooreWhile Julianne Moore can start clearing space on her mantel for that best actress golden Oscar statuette, it is the troupe of passionate players at the heart of this story – an author, writers, producers, directors, actors and advocates – who brought Still Alice to the big screen and who also deserve the accolades.

Julianne’s tour de force performance in the role of a lifetime as a woman with early on-set Alzheimer’s disease, was made possible because a group of people were committed to showing the world what Alzheimer’s feels like for the 5.4 million Americans diagnosed today.

The “behind-the-scenes” story is how Still Alice just may be the little movie that ignites a big movement on how we view people with cognitive impairment and neurodegenerative diseases and propels Alzheimer’s onto the same stage of awareness and support as AIDS, cancer and heart disease.

The back-story begins in 1998 as Lisa Genova, a Harvard-trained neuroscientist with a grandmother suffering from Alzheimer’s disease, discovers that almost all the literature about dementia only looks at Alzheimer’s from the outside in, the perspectives all those of clinicians, researchers and family caregivers instead of the actual people diagnosed with the disease.

“What really drove the inspiration for the book was asking myself ‘what does Alzheimer’s feel like’ and not being able to find the answer in any literature – scientific or otherwise,” Genova told me during our hour-long phone interview. “Somehow I felt I had to write this story and in doing so it would keep me connected to my grandma.”

It took a few years and rejection from all the publishers she approached for Genova to bring her novel approach of telling the “inside out” story of Alzheimer’s to the printed page. Not deterred by publishers’ claims that a novel about Alzheimer’s was too limited, fearful and depressing, Genova self-published Still Alice in 2007 finally letting readers into the mind, heart and daily experiences of 51-year-old Alice. While the novel is about walking in Alice’s shoes, Genova also realistically portrayed the family’s experience with an understanding that the Alzheimer’s diagnosis affects more than just the person with the disease.

Read other Alzheimer’s caregiving books recommended by Caregiving Club

From Book to Screen 

Flash forward to an Alzheimer’s Association advocacy event in Washington, D.C. where Hollywood insider and Alzheimer’s caregiver and advocate, Elizabeth Gelfand-Stearns, listens to Genova, whose book has caught fire within the Alzheimer’s community and has hit the New York Times best-seller list, read a moving passage from Still Alice.

It struck a chord with Gelfand-Stearns, who had a maternal grandmother and a mother with Alzheimer’s. Along with her father and family, Gelfand-Stearns had created The Judy Fund, to honor her mother who was diagnosed with the disease at age 62, considered early-onset. The combination of telling a story of Alzheimer’s for the first time from the perspective of the person diagnosed AND showcasing that Alzheimer’s is not always about being age 80 and laying helpless in a nursing home – it can strike in your 40s, 50s, 60s – was all Gelfand-Stearns needed to start looking for a way to bring the book to the screen.

The Judy Fund Event (L to R): Sherri Snelling, Caregiving Club; Dr. Maria Carillo, National Alzheimer's Association; Elizabeth Gelfand-Stearns, The Judy Fund; Dr. Jill Kalman, Mt. Sinai Medical Center New York

The Judy Fund Event (L to R): Sherri Snelling, Caregiving Club; Dr. Maria Carillo, National Alzheimer’s Association; Elizabeth Gelfand-Stearns, The Judy Fund; Dr. Jill Kalman, Mt. Sinai Medical Center New York

“I just knew so many people, especially women who are disproportionately affected by Alzheimer’s, would recognize themselves in Alice,” Gelfand-Stearns told me. “This story was the opposite of the typical response to Alzheimer’s – to push it away and not think about it because ‘I’ll worry about it when I’m 80.’ This was the OMG moment when I realized everyone can see themselves in Alice – an accomplished, successful professor, wife and mother in her 50s. If Alice can have it, so could I, or my sister, or my friend.”

Read Sherri Snelling’s PBS Next Avenue article on how Alzheimer’s Impacts Women the Most

Gelfand-Stearns says the reality is Alzheimer’s is the 6th leading cause of death in the U.S. and the only disease in the Top 10 which has no cure and no survivors. This is our society’s next big epidemic and it’s important to not delay what we know is coming – a rising tide of aging people who will have dementia yet no hope to slow the progression or cure the affects.

Together with her producing and advocacy partner, Maria Shriver (the poster woman for the toll on families dealing with Alzheimer’s, her father Sargent Shriver died from the disease) Gelfand-Stearns helped shepherd the book to its big screen debut collecting various co-producing partners. The wish became reality when Julianne Moore signed on to play the titular character, Alice, and convinced her fellow cast to sign up for well-below their star status asking prices, including Alec Baldwin as Alice’s husband and young sensation Kristen Stewart as the eventual caregiving daughter, Lydia.

Moore, whose acting skills are matched by her exhaustive character research, insisted on spending four months talking to early on-set Alzheimer’s patients, their family caregivers, researchers, doctors and long term care agencies in order to fully embrace and immerse herself in the Alzheimer’s experience and to present the story of how it feels to day-by-day lose your memory, your independence, your life.

“I need to see it for myself to authentically play it,” Moore told Gelfand-Stearns. Moore became especially close to one woman, Sandy, who was diagnosed at age 45, even younger than the fictional Alice. Moore related that Sandy would have days where she could remember and function almost normally, and then there would be days where things in her brain were lost. What moved Moore is while Alzheimer’s was erasing a patient’s memories and daily abilities, the personality and essence of who this person is remained. It is the realization that Alzheimer’s patients do not disappear, that Moore has said in numerous interviews, is what interested her in doing the movie.

Still Alice movie poster

Rounding out this passionate group are screenwriters and directing partners, Richard Glatzer and Wash Westmoreland. Right before filming began, Glatzer was diagnosed with ALS, different from Alzheimer’s but still a progressive neurodegenerative disease. His understanding of how your life is slowly slipping away from your control brought a nuanced touch to the movie and inspired the cast and crew that life and your life’s passion can continue. During production, unable to speak, Glatzer would direct the actors via an iPad.

All involved with the movie are hopeful this becomes the defining moment when society, our government agencies and legislators realize we can no longer dismiss or ignore the impact of dementia.

“It’s easy for the world to ignore the elderly,” Genova tells me. “People don’t typically rally around an 80-year-old with Alzheimer’s, it’s sad and heartbreaking but it does not create a movement. But it’s almost impossible to ignore someone in their 50s with this disease.”

Genova believes this is why the vast moviegoing public may make Still Alice a rallying cry and help to erase the stigma of this disease which has lived in the shadows for too long  (just think of what Philadelphia did to ignite support for those with AIDS and HIV).

Gelfand-Stearns said many years ago we never said the word “cancer,” it was called the “Big C” because people were afraid and it was a death sentence. Then in the ‘80s and ‘90s AIDS and HIV was stigmatized and seen as only affecting a certain part of the population until Hollywood got behind the movement and gained Washington, D.C.’s attention.

Today, with treatments such as mammograms and AZT and society’s support with walks and ribbons, and the federal funding needed – these diseases can claim survivors and the stigma is non-existent. Gelfand-Stearns is hoping Still Alice and the campaign she is launching with Maria Shriver and the Alzheimer’s Association, My Brain, will have the same results. The campaign strives to have people use their brains in combating this disease and to understand that an Alzheimer’s diagnosis, which on average is around age 72, means the person has actually been living with the beginnings stages of the disease for 15-20 years.

Alz Assoc My Brain Campaign Celeb Poster

“My wish is that Julianne wins the Oscar, making everyone want to see this film which will lead to showing people the humanity, love and dignity of Alzheimer’s patients,” an emotional Genova told me. “If my book and this movie can be a cause for the call to action, what could be better than that?”

©2015 Sherri Snelling

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

martin-luther-kingFifty-two years ago, Martin Luther King Jr. gave his famous “I Have a Dream” speech on the steps of the Lincoln Memorial in Washington, D.C.  As we honor Dr. King’s birthday this month with the “MLK Day of Service” family caregivers can perform two acts of service for their loved ones:

1)      Ensure your loved one’s end-of-life wishes are in order (including Living Wills, Health Care Directives, Durable Power of Attorney, DNR, etc.).

2)      Help your loved one fulfill something on their bucket list.

Following are two great ways for caregivers and their loved ones to achieve both of these dreams.

The Five Wishes

The Five Wishes gif

When it comes to end-of-life wishes – especially the legally binding paperwork so essential to ensure families are not pulled apart when they need to come together – it is hard to start the conversation. There is a tool available that is not only affordable, valuable and legal but helpful in beginning the dialogue about end-of-life. It is called The Five Wishes.

In 1997, Jim Towey, who had served as MotherTeresa of Calcutta’s friend, volunteer AIDS worker and legal counselor, created a nonprofit organization, Aging with Dignity. At the core of the organization was a document Towey created that was in his words a “living will with a heart and a soul.” Essentially, the document asks five questions that cover medical, personal, emotional and spiritual needs to help you communicate how you want to be treated if you are too ill to speak for yourself:

  1. Which person you want to make health care decisions for you when you can’t make them.
  2. The kind of medical treatment you want or don’t want.
  3. How comfortable you want to be.
  4. How you want people to treat you.
  5. What you want your loved ones to know.

Click here to watch the Me Time Monday Video: How to Have the C-A-R-E Conversation

To date, the $5 document (either downloadable to your computer or mailed to you) has been filled out by 18 million people worldwide and has been translated into 26 languages and Braille. It is used in all 50 states and meets the legal requirements for an Advance Directive in 42 states (in the remaining eight states you can attach The Five Wishes to the forms that state requires).

Because The Five Wishes has interesting origins with the principles of Mother Teresa infusing its purpose, this can be the conversation starter with your family.  While the emphasis is on aging baby boomers to ensure these wishes are in place, having your wishes written, legally binding and communicated to family is smart for everyone.

It is the legacy of the Terri Schiavo case that shows us the agony and antagonism that can happen to tear families apart when someone’s end-of-life care is unknown. Schiavo was only 27 when she was put on a ventilator and feeding tube after cardiac arrest left her brain dead.  She lay in a vegetative state for 14 more years while her husband battled her parents over whether or not to keep her alive on machines.  If she had a Living Will or a Five Wishes document, there never would have been a battle.

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

The reality is if you do not have the conversation, family members can be confused and conflicted which can lead to emotional exchanges you do not want.  Dying is not a choice but how the end will be is.  We owe it to our families to share those wishes.  Your legal wishes may be written down but now is the time to start talking.

The Dream Foundation

DreamFoundationSquareWhen it comes to dreams, we all have our bucket list.  However, if you are battling a terminal illness, that bucket list seems even more precious but perhaps more elusive. Pain, immobility and money issues can dash these dreams and many give up their joy so they can focus their efforts on surviving.  But finding those moments of peace, reconciliation, validation and pleasure are part of life – no matter whether we are at the beginning, middle or end of our days.

One organization understands how important this is and grants real-life bucket list wishes to help caregivers help their loved ones achieve these end-of-life dreams.  Appropriately, it is called The Dream Foundation.

Seventeen years ago, Thomas Rollerson wanted to give his dying partner one last dream:  to go to the movies and see Mrs. Doubtfire starring his favorite actor, Robin Williams.  Seemingly a simple request, they set out for the move theater with water bottles to keep his loved one hydrated, a critical tool in abating the pain of his illness.  The theater asked the gentlemen to leave because you could not bring your own water into the theater. Rollerson, dedicated to helping his loved one see a last movie, called organizations dedicated to childhood dreams for terminal patients such as Make-A-Wish and the Starlight Foundation. All these organizations limited their help to children only and Rollerson was amazed to find no group granted adult wishes.

Undaunted, he contacted the movie studio, Twentieth Century Fox, and was astounded yet grateful when they provided a copy of the film (since the movie was still in theaters it was not yet in video stores).  This experience galvanized Rollerson to help other caregivers fulfill the dreams of the adult loved one who has last wishes. Thus, The Dream Foundation was created in 1994.

To date, The Dream Foundation has fulfilled thousands of wishes for adults battling terminal illnesses including more than 2,500 dreams in 2012.  Rollerson is proud of the foundation’s success – one of the few and longest-operating nonprofit organizations to grant wishes nationwide for terminally ill adults and to not limit the wishes to those with certain diseases (for instance there are other groups who grant wishes for adult cancer patients).

“I had a network of contacts in the Hollywood and film community and I started reaching out to see how others could help and it grew from there,” says Rollerson.

As opposed to the over-the-top wishes we watch Jack Nicholson and Morgan Freeman enjoy in the movie, The Bucket List (such as an African safari, dining in Paris and riding motorcycles along the Great Wall of China) he says his favorite wishes granted are the simple ones.  The Dream Foundation hosted a 104-year-old’s birthday party and invited the dream recipient’s brother whom he had not seen in 40 years.  Another woman had never stayed in a first- class hotel so the foundation gave her a weekend stay at a five-star resort. A 40-year-old man with lung cancer was granted a last wish of a fly fishing trip with his young sons and yet another dream recipient was given a state-of-the-art hearing aid “so he could hear what his grandchildren were saying to him.”

“It’s the simple joys in life we take for granted that become so important as we face ‘the end’,” says Rollerson.  “I learn from each dream we’ve given and it has become a gift to me to give these dreams.”

CastofCaregivers Cover FINALNote:  Read more about end-of-life issues in A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care by Sherri Snelling.



©2015 Sherri Snelling

2015 – Helping Caregivers See the Light

2015 Caregiving ClubAll year long we are dedicated to posting resources and articles that help caregivers better prepare for their role of a lifetime: the unexpected caring of a loved one. Caregiving can take us to dark places but our hope is that armed with information we can help bring light into your life.

Caregiving at the Movies – Still Alice

Still Alice movie posterA must-see on your movie list should be Still Alice – Julianne Moore’s poignant Oscar-nominated role reminds all of us that Alzheimer’s disease can strike even in your 50s.  Read the blogs about this movie that will propel the movement to END ALZ.

September – Prostate & Ovarian Cancer Awareness Month

SEP Prostate, Ovarian Month

September is National Prostate Cancer Awareness and National Ovarian Cancer Awareness Month. Each year, 22,000 women are diagnosed with ovarian cancer and 220,000 men are diagnosed with prostate cancer. Learn more about prevention, treatment and support groups for these cancers from American Cancer Society.


Read our CEO, Sherri Snelling’s interview with Alana Stewart on her caregiving journey with best friend, Farrah Fawcett, who battled another type of rare anal cancer.

Alana Stewart and Farrah Fawcett – Caring for an Angel


Celebrity Spotlight

Celeb Interviews NOV ALL


In November we celebrate the caregivers for National Family Caregiver Month. Everyone will be involved in caregiving – either as the person giving care or the person receiving care. Caregiving defies all socioeconomic boundaries which is why our CEO Sherri Snelling interviews celebrities who have cared for loved ones – to show as caregivers we are not alone and we all go on this journey in one way or another. We are all part of “A Cast of Caregivers.” Read some of Sherri’s celebrity interviews below:


Alan and David Osmond on MS

Alana Stewart and Farrah Fawcett

Brooke Shields – endless love in caring for her mom

Casey Kasem’s Legacy for Caregivers

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

Diane Keaton – Sandwich Generation caregiver

Glen Campbell’s Farewell Tour

Glenn Close wants to change your mind about mental illness

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

Joan Lunden – coast to coast caregiving

Joan Lunden on challenges of guilt and caregiving

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


Marg Helgenberger – Juggled College, Career and Caregiving

Meredith Vieira – caring for a husband with MS

What Suze Orman learned caring for her mother

Sylvia Mackey – Hall of Fame Caregiver Who Changed the NFL

The Wish to Have Death with Dignity

brittany-maynard-1-435The 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 Solution for Stress: Me Time Monday

Monday calendar dreamstime_14224102 (2)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

Caregiver Solution to New Year’s Resolutions

Watch the Me Time Monday video tips on Caregiving Club’s YouTube channel

November National Caregiver Month

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.

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.”