Holly Robinson Peete – Superstar Sandwich Generation Caregiver

As we commemorate National Parkinson’s Disease Awareness and National Autism Awareness this month, our CEO Sherri Snelling interviewed Holly Robinson Peete, TV star, singer, author and co-founder with her husband, NFL star Rodney Peete, of the HollyRod Foundation which helps families of those with Parkinson’s disease and autism.  These are two health issues Holly knows well – her father suffered from Parkinson’s and her oldest son, RJ, is living with autism.  This Super Sandwich Generation caregiving star, talked to Sherri about getting rid of guilt, keeping her marriage in play and leading Team Peete to help others.

Holly R Peete Parkinsons and Autism

When it comes to superstars in this game we call life, Holly Robinson Peete is a top draft pick.  An actress, talk show host, singer, author, passionate advocate, wife and mother, Holly appears to have that perfect existence.  But, even the most perfect pearls are formed by being tossed about in rough seas.

Holly’s perfect life has faced two unforeseen and often devastating blows.  While juggling a thriving acting career, marriage and motherhood, she was also caring long distance for her father who suffered with Parkinson’s disease and simultaneously learned that one of her twins had autism.

The Sandwich Generation of family caregivers – more than 24 million strong according to the National Alliance for Caregiving – is defined as someone who is sandwiched between generational care, caring for a child or children still at home while also providing assistance or full-time care to an older parent.  In Holly’s case, she is Super Sandwich Generation: dealing with a father with a progressive disease of the central nervous system, and raising twins, one who was healthy and active (her daughter Ryan), and the other (son RJ), who was withdrawn and showing the symptoms of a special needs child.

For some people, this double hit would be enough to bring you down before the game even gets started.  But, for Holly Robinson Peete, she learned to fight through to get to the goal line.

From Sesame Street to 21 Jump Street

It was in the 1980s when Holly was still in college at Sarah Lawrence in Bronxville, New York, that her father started showing the early signs of what would be eventually diagnosed as Parkinson’s disease.  He was only 46 years old.

ALotOfHotWaterGordon Sesame StreetHer father, Matthew T. Robinson, Jr. was a producer and also played “Gordon” on the award-winning PBS-TV children’s program Sesame Street in the 1960s and 70s.  In the late 70s and 80s he went on to become one of the most prolific TV screenwriters for shows such as the wildly popular, The Cosby Show.  Just as her father thrived in TV, Holly came by the acting gene naturally.  In the 1980s and 90s, she decided to give acting a go and was riding high on a career that saw her become a breakout TV star on 21 Jump Street alongside a then unknown Johnny Depp followed by her star turn on Hangin’ with Mr. Cooper.  During this time, since Holly’s parents were divorced, it was up to Holly and her brother to support their father as his disease progressed.

It is estimated that one million people are diagnosed with Parkinson’s disease (PD) and each year there are 60,000 new cases in U.S.  This neurodegenerative brain disorder is characterized by a progressive destruction of cells in the central nervous system that reduces supply of dopamine causing nerve cells to fire incorrectly and causing patients to lose control of their normal body movements. While later stages of the disease are devastating, early warning signs can be subtle and progress gradually.  Not every PD patient has the same symptoms. Some experience poor balance and frequent falls, rigidity or muscle stiffness, tremors, and Bradykinesia which is the slowing down or loss of movement (shuffling steps, loss of one arm swing when walking, and difficulty or inability to turn the body).  The most high profile people living with PD today are the actor Michael J. Fox and former world heavyweight boxing champion Muhammad Ali.

“My first reaction to my dad’s diagnosis was ‘what is Parkinson’s’?” says Holly.  As a young college student she raced to the library to find out everything she could about the disease. “I saw two words in the books I read:  neurological and incurable.  I felt helpless and in a dark place and it was hard, this was in a pre-Google period and there was no Michael J. Fox or Muhammad Ali who had raised awareness about Parkinson’s.”

Double Dose of Devastation

While still providing care to her dad, Holly’s career was taking off and so was her love life.  She had fallen for Rodney Peete who had been a superstar college football player at USC and one of the NFL’s best quarterbacks with a 16-year career playing for the Philadelphia Eagles, Washington Redskins, Dallas Cowboys and Carolina Panthers.  They were married in 1995 and two years later Holly was a sought-after actress, NFL wife and new mom to fraternal twins Rodney Jackson and Ryan Elizabeth.

It was at this exciting time for Holly, that life gave her two blows.  Her father’s illness was progressing to a point where he needed around the clock care and Holly and her brother decided he needed to live in a special care facility.   Since Holly lived in Los Angeles and her father was in New York, this made Holly one of the eight million long-distance caregivers.

“The day we moved my dad into the facility was singlehandedly the worst day of my life, to this day I still have regrets about the decision but there really were not a lot of choices,” says Holly with the pain still evident in her voice even though this was almost 10 years ago.  She had her twins, a husband who was on the road for six months out of the year and she was pregnant again.  “The guilt has never really gone away but I don’t hold myself accountable anymore – it was a hard choice but really the only choice.”

cover of autism file magazine Apr 2012It was during this painful period in Holly’s life that her three-year-old son, RJ, was given a devastating diagnosis:  autism.

“I know it’s a cliché but when we were told about RJ, my life just stopped right there in that doctor’s office,” says Holly.  “I call that day the never day – we were told all the things my beautiful baby boy would never do and at first I felt 10 times more than hopeless.”

Holly recalls how the diagnosis of her son was very different from learning about her dad’s disease.  “Even though my dad was young when he was diagnosed with Parkinson’s, it was totally different to hear that your three-year-old child will never really do anything normal.”

Mars v. Venus

What happened next came out of left field for Holly.  Her husband Rodney had been “my rock while I cared for my dad,” always there to support his wife and the father-in-law who adored him.  But, suddenly with RJ’s diagnosis, Rodney became withdrawn, frustrated and definitely living in denial.

“This was the classic men are from Mars, women are from Venus scenario,” says Holly.  “Men and women just think and do things differently.”

Initially, Rodney was in denial about RJ and as is typical of fathers of special needs children, he distanced himself and was less involved in the daily struggle in part because he was still playing in the NFL which kept him on the road for months.  While it is estimated that 85 percent of parents with special needs children divorce, Holly actually thinks the distance saved their marriage.  “It gave me time to cope on my own without facing Rodney’s different attitude and ideas about RJ,” says Holly.  “Rodney originally thought RJ just needed more discipline, I knew it wasn’t about that at all.”

While Rodney retreated, Holly got to work.  She learned everything she could about autism in the same way she had educated herself about Parkinson’s disease.  Holly learned that autism impairs a person’s ability to communicate and socialize normally with others and often has a physical manifestation of repetitive behaviors.  Statistics showed that one in every 110 children has autism spectrum disorder (ASD) and symptoms can be subtle or significant.  She also learned that there is no cure for autism.

Given little hope by doctors for RJ’s ability to assimilate into normal childhood, Holly refused this dismal outlook for her son and turned to alternative measures.  She found a wonderful autism therapist, she established a gluten-free diet for RJ which had some very positive effects and she brought music into his life which she found soothed her son.  When RJ recorded his first music single, Holly believes it was a way for him to not feel “judged” as he often did during sports or other activities.  She also maintained as normal a life as possible for her other children, which in addition to RJ’s twin sister Ryan now included sons Robinson and Roman.

During this time, Rodney and Holly admit to a lot of foul plays with each other.  In reflection, Holly says, “I wish I had been more patient with Rodney and respectful of his denial but I was too focused on RJ.”  She credits Rodney for coming up with the winning game plan.

“Rodney had that ‘oh my god’ moment when he realized he could lose his family but he chose instead to enter into the fight and save us all.”  Holly said when she and Rodney got the same game plan going, everything changed.  Just a few weeks ago on Valentine’s Day, Holly and Rodney renewed their marriage vows with all four children as their attendants.

Team Peete Scores

Rodney credits an autism father support group with helping him understand that instead of being dismayed with RJ’s inability to operate in Rodney’s world, Rodney learned to enter RJ’s world.  The result was Rodney’s 2011 book, Not My Boy! A Dad’s Journey with Autism, which he hopes will help other fathers of special needs children who are struggling to understand their situation and create a “new normal.”

Holly co-authored a book for Scholastic with her daughter Ryan who wanted to help other kids learn about her brother’s autism.  The book, My Brother Charlie, gave Ryan a hero’s role in her brother’s daily challenges and won an NAACP Image Award.  And, together Holly and Rodney have built the HollyRod Foundation, originally created to support families facing Parkinson’s to honor her father now expanded to also help families living with autism in recognition of the lessons the Peetes have learned from RJ.

Her relief from the guilt she says is inevitable for all caregivers comes from the impact of the HollyRod Foundation that helps families just like her family needed answers and hope.  “At some point, you take your guilt and you move on and I did that by paying it forward,” says Holly.  “Knowing that my family can help others and maybe ease their caregiving journey is the best gift of all.”

Spoken like a true superstar.

 GROUP4660RT Peete family portrait

Photo:  Christopher Voelker

Read Sherri’s book which includes more of the interview with Holly Robinson Peete, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care. My person note on Holly – since I interviewed her in 2012 we have stayed in touch and Holly continues to be a passionate advocate for caregivers. I was proud to share the stage with her last fall where we both spoke about caregiving to a crowd of 500 in Chicago.

CastofCaregivers Cover FINAL

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©2015 Sherri Snelling

Caregiver Stress is No Joke

stress imageWhile some people will start the month by playing a funny joke on a friend or co-worker, the beginning of April, which marks National Stress Awareness Month, makes me think about the stress that plagues those who are caring for an older loved one.  And, believe me, caregiver stress is no joking matter.

While stress is the No. 1 complaint when it comes to a caregiver’s own health and wellness, finding stress relief is just one more thing caregivers have to do.  However, if you do not develop ways to become stress-free, it can seriously impact your ability to continue caring for your loved one.

Numerous studies point to the direct correlation between prolonged stress and health risks.  Chronic stress can lead to higher blood pressure which can lead to hypertension which can ultimately lead to stroke or heart attack.  In fact, a study conducted by the Commonwealth Fund found caregivers are twice as likely as the general population to develop chronic illness such as heart disease or cancer due to prolonged stress. In addition, the American Psychological Association in its annual Stress In America™ survey showed the negative health impacts from stress are more pronounced for those over age 50 who are also a family caregiver.

In addition, studies have found caregivers who experience stress turn to bad habits to cope.  One study from the National Alliance for Caregiving found 10 percent of caregivers use alcohol or medications to cope with stress.  Another survey, Stressed and Strapped: Caregivers in California conducted by the UCLA Center for Health Policy Research, found among the state’s six million caregivers, more than 16 percent were smoking and 27.5 percent are obese – at least four percentage points higher in each case than non-caregivers.   For caregivers with serious emotional distress, the survey found the likelihood of smoking goes up by about 208 percent.

How Can Caregivers Find “Stress Relief?”

Stress Ball dreamstime_m_8343500 (2)

Start by taking a Caregiver Stress Test developed by the American Medical Association or the Alzheimer’s Association.  Just by taking this test you may start to realize you are nearer to the breaking point than you thought.  You can and should use this stress test to share with your doctor.

If you score off the charts, it is time to decompress before your engine blows.  Here are five tips to help find stress relief:

 

 

 

 

Vault dreamstime_m_8453967 (2)1. Find your “vault” – we all have a spouse, an adult child, a sibling, a best friend or spiritual advisor who can give you a shoulder to cry on or help get your mind off things for even a few minutes.  I call these friends your “vault” because you know whatever you tell them will go in the vault and stay there.  They will not judge you or share your feelings with others – it is a sacred conversation that truly remains confidential.   Having a “vault” is a precious gift in our reality-TV obsessed world of “airing one’s dirty little secrets.”

 

 

 

 

two hands pulling each other or holding on.2. Join a support group of other caregivers – if you are frustrated, angry or depressed, it helps to let off steam or find comfort by talking to other caregivers who understand exactly what you are going through.  Often, caregivers find talking to other caregivers who are going through similar challenges and anxieties can be empowering and nurturing.  Sometimes other family members and friends can be sympathetic but not empathetic.  It is important to find a support group specific to your situation – whether you are caring for someone with cancer, Alzheimer’s or in the case of our veterans, you may be a caregiver of someone with post-traumatic stress disorder or a physical disability – find the group where others in the circle or online truly understand.

One thing I have heard over and over again from caregivers is they feel they are all alone.  The reality is you are not alone.  By reaching out and voicing your fears, frustrations and anger in a safe environment with other caregivers – you will be amazed at how just talking can start to lift that weight off your shoulders.

 

Yoga at Sunset dreamstime_m_17221336 (2) 3. Try yoga, tai chi, or meditation – these relaxation activities are not just for the “new age” lovers – there are real health benefits to performing at least one of these activities just a few minutes a day.  Yoga and tai chi can lower your blood pressure, improve your posture and circulation, relax your muscles, provide headache relief and boost your immune system.  Even if you do not have time for yoga, just try calmly breathing for a few minutes.  Everyone’s favorite physician, Dr. Oz advises lying on your back and taking 10 deep, long breaths a day – it will help take your mind on a journey to a happy place and helps removes toxins from your body.   Learning how to relax is a true skill – one you have to practice every day.

 

 

 

Washing Soapy Hands dreamstime_m_16837149 (2)4. Do something to soothe you physically – you will be amazed at how it calms your mind.  A bath is great or if you do not have the time, just running your hands under warm water for a few minutes can truly relax you.  You can also try giving yourself a massage – wrap your fingers around your upper arm and knead your fingers all around the arm working your way down to the forearm and wrist.  Repeat on the other arm.  AAAHHHH.

 

 

 

Eyelid dreamstime_m_2327813 (2)5. Get enough sleep – Seven to eight hours is recommended.  Create a sleep-inducing environment:  dark, quiet, comfortable and cool.  Do not use your bedroom for anything other than sleep (sex is also OK according to the experts!).  No watching TV, using your laptop or iPad or even reading in bed (this is my downfall).  Make sure you do not eat at least two to three hours before bedtime and avoid caffeine or alcohol close to bedtime.  Smoking can also cause you to have trouble sleeping.  If you find you are tossing and turning at night and you cannot get those eyes closed, try drinking green or chamomile tea 1-2 hours before bed or put a lavender pillow near your head which aids relaxation.  Establish consistent sleep and wake schedules, even on weekends.

 

 

 

 

Stress can be a caregiver’s biggest enemy.  When you become a “stress-buster,” you will be on your way to finding balance that will bring you better health and wellness and you will find more energy and emotional stamina to continue to care for your loved one.

Read more about health and wellness for caregivers as well as how celebrities who have been caregivers find their “Me Time” in Sherri Snelling’s book,  A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care

Copyright 2015 Sherri Snelling

CastofCaregivers Cover FINAL

Caregiver Health & Wellness Recipe: Eat the Rainbow

Photo: AlexMax/Dreamstime

Photo: AlexMax/Dreamstime

March is National Nutrition Month and while it is sometimes hard for the average person to follow good nutritional guidelines, it is even harder if you are juggling your own healthy eating needs while caring for your loved one.

A study by the National Alliance for Caregiving shows that 38 percent of caregivers who feel their health have declined while caring for a loved one report weight gain or loss.  Skipping meals, eating fast food on the run, turning to non-nutritious snacks to cope with stress can all become part of a caregiver’s nutritional reality.

However, ignoring your own nutritional needs will impact your energy level, your ability to stay focused and alert and your physical and emotional stamina.  If your health starts to go downhill, it can be a slippery slope that can lead to you becoming as ill as or worse than the one you are caring for.  If you become sick, who will replace you to care for your loved one?

Super Foods for Super Heroes – The Caregivers

Photo:  Alexandra Petruk/Dreamstime

Photo: Alexandra Petruk/Dreamstime

Caregiving can be a superhuman role that can zap the physical and mental strength of even Wonder Woman.  When you are feeling overwhelmed, tired and stressed to the max, it is important to keep your powers at their peak.  Food is the fuel that can keep our bodies strong and our minds clear.

If someone told you there was a pill you could take which will lower your cholesterol, reduce your risk of heart disease and cancer and enhance your mood, would you take it?  Well, it may not be a pill but those foods are available at your local grocery.

According to WebMD, here is a grocery list of Super Foods that will ensure you remain a Super You. To make it fun, all you need to think about is “eating the rainbow” – choose colorful foods which typically provide the nutrients, fiber and other physical health needs to keep caregivers going strong.

Photo: Bethany Van Trees/Dreamstime

Photo: Bethany Van Trees/Dreamstime

Fiber keeps cholesterol in check and can aid weight loss since you’ll feel fuller. Look for beans, whole grains, fruit and vegetables.  I try to “eat the rainbow” daily – one food a day which is red, orange, yellow, green and blue makes it fun and easier to remember to add these super foods to your daily diet.

 

 

 

 

Photo: Dreamstime

Photo: Dreamstime

Blueberries are great anti-oxidants and an anti-inflammatory that can lower your risk of heart disease and cancer as well as other chronic illnesses.

 

 

 

 

 

Photo: Dreamstime

Photo: Dreamstime

Omega-3 rich fish such as salmon, herring, sardines and mackerel help your heart, joints, memory and some medical professionals believe it can also reduce depression.  A National Alliance for Caregiving study showed that 91 percent of caregivers who say their health has declined suffer from depression.  If you’re not a fish fan, you can also find Omega-3 in walnuts and flax seeds.

 

 

 

Photo: MCWMeng/Dreamstime

Photo: MCWMeng/Dreamstime

Soy such as tofu, soy milk or edamame, as well as almonds, oats and barley lower

  1. In addition, oatmeal can help regulate blood sugar levels which is important for diabetic
  2. (However, if you have a family history of breast cancer, it is not recommended you add soy to your diet).

 

 

 

 

 

 

Photo: Dreamstime

Photo: Dreamstime

Tea has been shown in several studies to lower cholesterol.  While the antioxidant power is the same in black tea as green tea; the green version has an added element which studies have found helps inhibit the growth of cancer cells.

 

 

 

 

 

Photo: Batuque/Dreamstime

Photo: Batuque/Dreamstime

Calcium found in dairy foods, salmon (again), leafy green veggies, almonds (again) asparagus and figs build strong bones and helps reduce the risk of osteoporosis – women over age 51 should have 1,200 mg daily.

 

 

 

 

 

 

 

Photo: Monkey Business Images/Dreamstime

Photo: Monkey Business Images/Dreamstime

Dark Chocolate – hallelujah!  Dark chocolate – at least 60 percent cocoa content – has eight times the antioxidants as strawberries and can help lower bad cholesterol (LDL) by up to 10 percent.  But don’t overindulge, 2-3 oz. a day will do it.

And, of course, don’t forget your daily multivitamin.

It is hard to be diligent about diet if you are caregiving.  But, if you can plan your grocery shopping on Mondays (part of your Me Time Monday plan) it might make it easier to remind yourself – every week – that you are as important as the person you are caring for.   Take along this list of Super Foods and stock up – it will help ensure you stay strong so that you can continue being a super hero for your loved one.

 

 

 

CastofCaregivers Cover FINALTo read more about nutritional needs for seniors and family caregivers, get Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

You can also read Sherri’s other blogs about nutrition for caregivers and senior loved one’s nutritional needs:

Caregiver Weight Connected to Breast Cancer Risk

David Murdock – 90-year-old billionaire and caregiver

The Osmond Family’s Greatest Act – Winning the Daily Battle Against MS

How You Can Combat the Senior Hunger Crisis

 

©2015 Sherri Snelling

Cat in the Hat Creator a Caregiver, Too! Who Knew?

Happy Bday Dr Seuss

Who Reads?  We Read!

On March 2 every year, we celebrate Read Across America Day, the reading initiative started by the National Education Association in commemoration of the birthday of our beloved children’s book author, Dr. Seuss (whose real name was Theodor Geisel). Some of his most widely published children’s books included:  The Cat in the Hat; Horton Hears a Who!; Green Eggs and Ham; One Fish, Two Fish, Red Fish, Blue Fish; and my favorite, How the Grinch Stole Christmas.

Dr Seuss wife HelenWho Cares?  He Cared!

What is perhaps the least known about Dr. Seuss is that he was a caregiver for his first wife, Helen Palmer Geisel, who was also a children’s book author.  For several years during perhaps his most productive writing phase, Helen, suffered from several chronic illnesses including battling cancer.  While Helen helped guide Theodor’s talents of his whimsical drawings of animals and the telling of their stories, Geisel gave his muse the love and care she needed throughout their marriage until her death in 1967.

In the years Geisel cared for his ill wife, there was not much recognition of the role of the spousal caregiver and even less support, especially for men who were caregivers. Since the Geisels did not have children, Geisel was primary caregiver for his wife during those years.

man and womanMen As Caregivers

In a 2009 study, Caregiving in the U.S., published by the National Alliance for Caregiving, at that time men made up about one-third of all caregivers.  However, a 2012 Pew Research Center’s Internet and American Life Project reports men now comprise 45 percent of all family caregivers in the nation. And, according to a study by the Alzheimer’s Association, men caring for a family member with Alzheimer’s disease or dementia almost doubled from 19 percent to 40 percent from 1996 to 2011.

Often men’s caregiving duties are to handle the financial and legal paperwork, medical insurance and home safety modifications for an older parent.  But, when it is spousal caregiving, as it was with Dr. Seuss, the caregiving duties can be all-encompassing.

And the emotional impact of caregiving hits men as much as women.

In the book, Who Says Men Don’t Care – A Man’s Guide to Balanced and Guilt-Free Caregiving, authors James V. Gambone and Rhonda Travland help men identify their caregiving style.  The authors looked at four generations of men as well as male personality differences and identified the following caregiving styles:   the Manager, the Searcher, the Loner, and the Techno-Virtual Caregiver. According to the authors, one issue for men is having a harder time asking for help.

“While all caregivers face stress and frustration, we found that men often have a harder time dealing with a caregiver role,” says Travland.  “It’s very difficult for them to ask for help.”

While they may not seek help as readily as female caregivers, a 2012 study conducted by researchers at Bowling Green State University shows men may cope with caregiver stress better than women.  The study looked at the differences in male and female caregivers of an older parent and how they dealt with stress.

Photo: DavidLee/Dreamstime

Photo: DavidLee/Dreamstime

“We found men seem better at dealing with caregiver stress because they take a ‘block and tackle’ approach to caregiving tasks,” says I-Fen Lin, associate professor and lead researcher on the study. “They complete a caregiving task and move on to the next thing. Conversely we found women are more socialized to be nurturing but they internalize their caregiving performance with constant worry and anxiety, thus, leading to higher stress levels and more persistent stress.”

During Geisel’s caregiving years support groups for caregivers were virtually non-existent. In today’s world, whether in-person support or virtual online support is a growing area of the caregiving world. Homewatch CareGivers, a comprehensive home care agency founded in 1980, created what it’s billing as the first online community for male caregivers.  The online forum provides male caregivers with crucial caregiving information from peers such as how to deal with sundowning of an Alzheimer’s loved one, how to bathe a parent of the opposite sex or what advice veteran caregivers have for a new caregiver.  According to the site, men are more likely to use the internet to seek information and support but less likely than women to seek caregiving training which makes the forum a vital resource for men who are caregiving.

When it comes to caregiving, we all have to find ways to get support so we can continue to have balance in our lives – whether it is writing a book, coaching a soccer team or working at a demanding job.  While Dr. Seuss wrote for children, his lessons on life impact all ages. These words from our beloved Dr. Seuss should help caregivers to feel empowered to find that balance and remember that their own health and wellness is in their hands and their hearts:

Dr Seuss Brains in My Head

 

 

CastofCaregivers Cover FINALTo read more about men as caregivers and resources that can help, get Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

You can also read Sherri’s other blogs about men as caregivers:

Billionaire caregiver David Murdock, CEO of Dole

Famous men of caregiving

Increase of men as caregivers

 

 

 

 

©2015 Sherri Snelling

Caregiving Goes to the Oscars

Photo: JamesSteidl/Dreamstime

Photo: JamesSteidl/Dreamstime

What do the Oscars and caregiving have in common? Quite a bit…read below for the articles about recent movies that have engaged our caregiving emotions and the Oscar winners who have been real-life caregivers.

 

Movies that teach us about caregiving

Still Alice Julianne MooreStill Alice – the movie that may spark the Alzheimer’s movement

1st Annual Caregiving Goes to the Oscars (2012)

2nd Annual Caregiving Goes to the Oscars (2013)

Amour – A Caregiving Movie Review

And the Oscar Goes to Caregivers

Oscar winners who are or have been real-life caregivers

Photo: CelebrityPhotos/Dreamstime

Photo: CelebrityPhotos/Dreamstime

Catherine Zeta-Jones won a Best Supporting Actress Oscar for her performance in 2002’s Chicago.  Here is our interview with her about dealing with her mental health issues while caregiving for another Oscar winner – her husband Michael Douglas who battled throat cancer.

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

Photo: Creative Commons

Photo: Creative Commons

Diane Keaton won her Best Actress Oscar for her performance in 1977’s Annie Hall, playing the title character. In real life Keaton was a sandwich generation caregiver – caring for a mother with dementia while raising two children.

Diane Keaton – Sandwich Generation caregiver

Photo: Courtesy of Campbell Family

Photo: Courtesy of Campbell Family

When Glen Campbell was diagnosed with Alzheimer’s disease in 2011 his family including his wife Kim and daughter Ashley did not know what was in store for them as his future caregivers but as a family they made one last farewell tour with the music legend.  Nominated for best song at this year’s Oscars for “I’m Not Gonna Miss You,” the Rhinestone Cowboy’s story still touches our hearts.

Glen Campbell’s Farewell Tour

Photo: ImageCollect/Dreamstime

Photo: ImageCollect/Dreamstime

While Glenn Close has not yet won an Oscar, she has been nominated six times including for 1988’s Fatal Attraction playing a woman who had mental instability. The role hits close to home as Glenn has played real life caregiver to her sister who has mental illness.

Glenn Close wants to change your mind about mental illness

Photo: CelebrityPhotos/Dreamstime

Photo: CelebrityPhotos/Dreamstime

Jodie Foster has won two Oscars – one for The Accused and the other for Silence of the Lambs. But it wasn’t until she was honored with a lifetime achievement award at the Golden Globes in 2013 that we learned she was also a sandwich generation caregiver for her mom with dementia.

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

Photo: ImageCollect/Dreamstime

Photo: ImageCollect/Dreamstime

Reese Witherspoon won an Oscar for her portrayal of June Carter Cash in Walk the Line. But it was running not walking that brought Witherspoon face to face with a big caregiver dilemma – an older driver who had lost control of the vehicle. Read Witherspoon’s understanding story of the incident:

Reese Witherspoon Forgives Senior Driver in Recent Accident

A Football Wife Helps the NFL Tackle Dementia

Football 50 yard line dreamstime_m_15024968 (2)As the New England Patriots celebrate their glory as victors in the Super Bowl 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, statjohn-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

Heart Health – Know Your Numbers

 

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Every October we are immersed in a sea of pink – the color for breast cancer awareness –  yet the No. 1 killer of women (and men)  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.

Every February, the American Heart Association celebrates 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

Learn Your Family’s Health History

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.”

 

Celebrating the Grammys & Music Therapy

Groovin Puppy dreamstime_3978556 (2)Music therapy is a powerful tool for caregivers of those with Alzheimer’s, dementia, Parkinsons, autism and other diseases or disorders. Read more about the power of music and the musical stars who have been caregivers.

Music Therapy – a 5-Note Plan for Caregiver Calm

Glen Campbell’s Farewell Tour

First Lady Caregivers

First LadiesWe celebrate two great former Presidents on February 16 but Caregiving Club celebrates the First Ladies who have also served as a family caregiver. This month read the stories of Rosalynn Carter, Nancy Reagan, Hillary Clinton, Laura Bush and Michelle Obama.

First Lady Caregivers

Caregiving at the Oscars

Oscar Statues LG dreamstime_m_19071736 (2)We celebrate Oscar® Sunday by putting the spotlight on caregivers – in reel life and real life!

Read here about recent movies about caregiving and the real-life caregivers who have been Oscar winners.

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.