Finding Caregiver Stress Relief

stress imageStress 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?”

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:

  1. Find your “vault” – Vault dreamstime_m_8453967 (2)

    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.”

 

  1. Join a support group of other caregivers

    two hands pulling each other or holding on.

    two hands pulling each other or holding on.

    – 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.

 

  1. Try yoga, tai chi, or meditation

    Yoga at Sunset dreamstime_m_17221336 (2)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.

 

  1. Do something to soothe you physicallyRubber Ducky dreamstime_m_19349163 (2)

    – 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.

 

 

  1. Get enough sleepEyelid dreamstime_m_2327813 (2)

    – 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.

 

©2016 Sherri Snelling

April is National Stress Awareness Month

APR 2016 Stress Month

April is National Stress Awareness Month. Stress is one of the biggest challenges caregivers face. It was cited as the No. 1 problem for those caregivers who felt their health was in decline and is the reason for 90 percent of all doctor appointments. Another study found that caregivers are twice as likely as the general public to develop chronic illnesses earlier in life due to the prolonged stress of caring for a loved one.

Stress is difficult to understand because so often is it invisible. Do you often have your shoulders hunched? Is your tongue press against the roof of your mouth? This is the invisible stress that you don’t realize is impacting your overall health.

Finding ways to manage stress is essential for caregivers. Here are articles from our CEO Sherri Snelling – a national advocate on caregivers finding balance and help for stress relief:

Caregiver RX for Stress: 3 Steps to Me Time Mondayoriginally published on Huff Post 50

Caregiver Stress is No Joke

Caregiver Tipping Pointsoriginally published on Forbes.com

Mars vs. Venus On Caregiver Stressoriginally published on PBS Next Avenue

Mondays are the Prescription for Better Caregiver Healthoriginally published on Examiner.com

Caregiving Is A Small World After Alloriginally published on Huff Post 50

April 10 -16 is National Volunteer Week

APR 10 16 Natl Volunteer Week

April 10 through 16 is National Volunteer Week. One of the hardest things for caregivers to do is ask for and accept help. But, if you don’t get a respite break and “time off” now and then, you may wind up more ill than the person for whom you are caring. What is interesting is that a national study found after caring for a loved one, caregivers are 50 percent more likely than the general public to volunteer to help other caregivers.

National Volunteer Week is a great opportunity for caregivers to reach out, for friends and family members to step up and for caregiving to become a team sport instead of a solo act. It does take a village, read our CEO Sherri Snelling’s article on caregiving and volunteerism:

8 Ways to Volunteer to Help America’s Largest Volunteer Health Care Work Force: Family Caregiversoriginally published on Huff Post 50

Enlist now to help caregivers of veterans

How Online Volunteers Support Caregiversoriginally published on PBS Next Avenue

April is National Humor Month

APR Natl Humor Month

April is National Humor Month and as the saying goes, “Laughter is the best medicine.” If there is one prescription for caregivers to relief stress it is having a few giggles or a good laugh. Caregiving can bring sadness, fear, anxiety and frustration so finding your inner funny bone is not always easy. But there is a lesson to be learned from the statistics that children laugh on average 350 times a day and adults only 15 times daily.

Two caregivers who also happen to be comedic actors – Seth Rogen along with his wife Lauren Miller and Amy Schumer – are using their funny bones to raise awareness for Alzheimer’s and multiple sclerosis respectively, two diseases that have impacted their families.

amy schumer

 

Seth Rogen, Wife dreamstime_xs_23085757 (2)

Read our CEO Sherri Snelling’s articles on humor and caregiving – a powerful elixir for stress relief:

Why Laughter is Crucial for Caregiversoriginally published on PBS Next Avenue

 

 

April 10 is National Sibling Day

April 10 is National Sibling Day. When it comes to caring for Mom and Dad, siblings can either form a strong care team or can be the cause of conflict. Understanding each sibling’s role and having the family caregiving conversation earlier rather than later can help make the caregiver journey a smooth ride for all family members.

There is another side to siblings and caregiving: a study found that 18 percent of those caring for someone over age 75 were siblings caring for siblings. And, caring for young adults with disabilities or chronic conditions tend to be managed by siblings and are longer-term and more intensive.

Read our articles from CEO Sherri Snelling about siblings and caregiving:

The Sibling Caregiveroriginally published on PBS Next Avenue

Also, read Kimberly Williams-Paisley’s new book, Where the Light Gets In – Losing My Mother Only to Find Her Again, about how she, her father and her siblings formed a cohesive care team for her mom with dementia:

Where the Light Gets In - COVER

Holly Robinson Peete – Shining Her Starring Spotlight on Autism/Parkinsons

As we commemorate National Parkinson’s Disease Awareness and National Autism Awareness this month, Sherri Snelling excerpts from her book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, her interview with Holly Robinson Peete. As a 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, Holly is a true caregiving champ.  Autism and Parkinson’s disease are two health issues Holly knows well – her father suffered from Parkinson’s and her oldest son, RJ, is living with autism.

hrp headshotWhen 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 Peete's book on the family's journey with his autistic son.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. MyBrotherCharlie book cover

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.

Team Peete. Photo by Christopher Voelker.

Team Peete. Photo by Christopher Voelker.

 

Cast of Caregivers Cover FINAL jpegHolly’s story along with other celebrity caregiver journeys are included in Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

 

©2016 Sherri Snelling

 

Music and Multiple Sclerosis – How the Show Goes On for the Osmonds

Alan and David Osmond

Alan and David Osmond

As we celebrate National Multiple Sclerosis Month, I was privileged to interview both Alan and David Osmond – father and son duo of the famous Osmond clan – about their inspirational story where both men are triumphing over this debilitating chronic illness. Following is an excerpt of my interview with Alan and David from my book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

They say lightning never strikes twice in the same place yet this is exactly what happened to Alan Osmond and his son David Osmond of the famous entertainment family.  This lightning came in two forms:  great musical and performing talent as well as a gift for songwriting but also something less glamorous:  a diagnosis of the autoimmune disease multiple sclerosis (MS).

The Show Goes On for the Osmonds

Growing up Osmond means you know how to be at the pinnacle of the entertainment world –

you sing, you dance and no matter what the show must go on.  This was no problem for David Osmond, one of eight sons born to Alan, the oldest of the famous Osmond Brothers who shot to fame along with Donny, Merrill, Wayne and Jay in the 1960s-70s (Marie and Jimmy came later).  As a torchbearer for the Osmond dynasty, David, age 32, has a successful solo career, still performs as the lead singer for the Osmonds – Second Generation, is hosting a new TV music competition reality series and participated in the eighth season of American Idol.

But, imagine if one day you woke up and found you could not walk, you could not hold a guitar, you could not sing because the pain in your chest and paralysis in your body reached from your toes to your diaphragm making it hard to breathe.  This was what David Osmond faced in 2005 when he was diagnosed with multiple sclerosis (MS) and went from a promising entertainment career into a wheelchair while still in his 20s.  Remarkably, it was the same diagnosis his father, Alan, had been given almost 20 years earlier when he was in his late 30s.  What makes this story so inspiring is that for the Osmond family, whose longevity in show business is legendary, both Alan and David are not only living with MS today, they are actually thriving.

Multiple sclerosis, which affects 2.5 million people worldwide, is an autoimmune disease that attacks the central nervous system and for which there is no cure.  Essentially, scars and lesions cause interference with the transmission of signals to the brain and spinal cord that then cause the unpredictable and often debilitating symptoms that MS patients experience such as numbness, tingling and searing pain in the extremities, periods of partial or full blindness, loss of sensory function such as taste or smell and even full paralysis.

While researchers feel there may be genetic predictors for MS (the National Multiple Sclerosis Society states that siblings or children of those with MS have a 1 in 40 risk of also having MS), there is no clear connection that one generation passes it to another.  What Alan did pass to his son David is a “can do” rather than a “can’t do” attitude towards living with MS.

“When I originally received the diagnosis, I had tested positive for West Nile Virus but some of the symptoms did not match up so they tested for MS and found I had the relapsing/remitting form of this disease which my doctors believe may have been dormant in my system but was triggered by the virus,” says David.  “I was in complete denial – I had grown up watching my dad battle MS and my symptoms were not really the same so I just could not believe it.”

There are four variations on the aggressiveness and progression of MS disease, Alan’s was the primary progressive type, a diagnosis only 15 percent of all MS patients receive.  With primary progressive there are no flare-ups or periods of remission such as with David’s type of MS – which means for Alan it is supposed to be a slow degeneration of the body’s functions.

Originally, David’s devastation took on the typical reaction people have when faced with a difficult diagnosis:  “Why me?”  He relates how one day while in a wheelchair he watched his brother playing on the floor with his kids and wondered to himself, “Will I ever have that?”  You can hear the emotion in his voice as he continues, “I’m almost embarrassed to admit that is how I felt because when I looked from my brother and nieces and nephews to my dad and realized, here is this man who has lived with this disease for 20 years and he has never complained, I realized life can go on and you can find ways around this disease just like my dad did.”

“I have a motto I live by – you have to be TUFF,” says Alan.  “It stands for: Target what you need to do; Understand everything you can about the challenge in front of you; Focus on how to live with or beat that challenge; Fight, Fight, Fight – you have to have the drive and desire to keep living and keep fighting for yourself and those around you.”

Osmond father and son tackled MS the same way they approach the music business – all out or as Alan says “I may have MS but MS does not have me.”

“I was given a cortisone shot when I was first diagnosed in 1987,” says Alan, “and it just about killed me.  It was right then that I decided there has to be a better way and I started investigating alternative medicine that would not have the side effects of traditional drugs.”

Family and Faith

Both Osmonds have found ways to deal with MS and overcome many obstacles and the dire prognosis of their physicians.  David was able to get up and out of his wheelchair with powerful steroid shots that helped him walk down the aisle with his beautiful bride, Valerie, a few years ago.  “I proposed to her from my wheelchair and she said, ‘Yes!’ so being able to walk down the aisle with her was something I just knew I had to do.”  He has not been back in his wheelchair since and the couple now has two beautiful daughters, ages one and three.

Father and son embrace all-natural homeopathic remedies and David takes up to 50 all-natural supplements a day while Alan adds a daily dose of 2,000-5,000 IUs of Vitamin D; they believe in using essential oils, such as Frankincense, for aromatherapy and they follow a healthy diet based on gluten-free (wheat-based products) and casein-free (milk protein) foods with limited meat and other proteins.  The strict adherence to an all-natural diet which Alan blends into most of his meals has helped manage his MS symptoms and helped him lose 30 pounds.  Alan also enjoys hydro-exercise – the buoyancy of the water not only takes the pressure off of sometimes painful joints but also helps with balance while practicing movements.  In addition, both Alan and David avoid stimulants such as cigarettes, coffee or caffeinated sodas, which is part of their Church of Latter Day Saints faith, and they believe in the power of prayer and positive thinking.  If there is an Osmond prescription for helping to tame the symptoms of MS it is simply “family and faith.”

Alan with wife Suzanne

Alan with wife Suzanne

David and wife Valerie

David and wife Valerie

In fact, both Alan and David credit their wives, Suzanne and Valerie respectively, with the kind of unconditional love so essential in a spouse when someone is facing a chronic illness.  According to the National Health Institute Survey conducted by the Centers for Disease Control, 75 percent of marriages among those couples dealing with a chronic illness end in divorce – 50 percent higher than the overall national divorce rate.

“There is a good side to every challenge in life,” says David.  “Sometimes dealing with something like multiple sclerosis can make your marriage better, I know both my wife and I have learned more patience with each other through this journey and I absolutely would not be where I am at today in conquering MS without her.”

Alan agrees that it was Suzanne who helped him seek the alternative remedies which have him defying all the odds with his prognosis.  All doctor predictions and prognosis pointed to Alan being in a wheelchair by now but instead Alan travels with Suzanne and is walking only occasionally using a leg brace or cart when he has to walk long distances.  Alan says, “It is not just one person who gets MS, it is the whole family.”  That is one of the reasons why Alan created his Web site, TheFamily, which addresses family issues around chronic illness and other life lessons.

Alan and David admit that they have learned a lot from each other through this journey with MS.  David says his dad has taught him to never feel sorry for himself, to embrace both the blessings and burdens in life with a positive attitude and to help as many people as you can with whatever you can.  Alan believes David has taught him what patience and perseverance are all about.

“I know it’s crazy to say, but it is actually a great time to have MS,” says David.  When his father was diagnosed more than 25 years ago, there were not a lot of options but today David, who sits on the board of the Nancy Davis Foundation for MS and attends her annual conferences for the foundation’s Center Without Walls says, “There are eight drugs on the market and several more being approved by the FDA as we speak.  The numerous choices we now have to attack this disease that is attacking our bodies – especially with the education about alternative, all-natural choices that I have made for my lifestyle – are encouraging.  I truly think we are going to lick this disease and the great research minds agree – they believe MS is one of the chronic illnesses that I may see a cure for in my lifetime.” (See more with David and other celebrities from the Nancy Davis Foundation for MS Race to Erase MS Event).

When I asked both Alan and David what are their private passions – both responded almost simultaneously with “spending time with family.”  While David enjoys sports like skiing even though his balance and agility are not what they used to be because of the MS, and Alan loves to continually learn new things and brainstorm on ideas – like teaching himself html code so he can build web sites – both men are happiest when surrounded by family.

As we wind up the interview, David is eager to get back to playing Legos and watching Disney movies with his two young daughters – a scene he was not sure he would have just a few years ago.  He says he wears a ring on his right hand that is engraved with ETTE – Endure To The End.  He says he has had the ring since before his MS diagnosis, so today he adds, “Endure to the end …of the day.”  With his girls calling for daddy from the other room, we say our “so longs” and I wish Alan happy birthday (June 22) and both men a happy Father’s Day.  I laugh as I later see a tweet from David – it says simply, “Going to make t-shirts for my girls that say ‘Having MS gets on my dad’s nerves.’”

©2016 Sherri Snelling

 

A Caregiving Fairy Tale: Sleeping Beauty

Eyelid dreamstime_m_2327813 (2)Sleep is at times elusive – especially if you are caregiving for a loved one. You either are burning the candle at both ends or you awaken several times throughout the night worried about a thousand tiny details. Either way, a lack of good, restorative sleep is not just a beauty bummer (dark circles under the eyes) but also a real health risk. Studies have shown a lack of 7-8 hours of restorative, deep sleep can cause drowsiness, irritability, increased stress, weight gain and even become a cause of possible Alzheimer’s disease later in life.

March 6-13 is National Sleep Awareness Week – a good time to review your sleep habits and establish good sleep hygiene.

Read our CEO Sherri Snelling’s article for Huffington Post on how caregivers need their beauty rest:

An Essential Caregiving Fairy Tale: Sleeping Beauty

 

 

Seven Super Foods for Super Caregivers

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.

  1. Eat the Rainbow

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.

 

 

 

 2. Berry Good

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.

 

 

 

 

 

 

 

3. Something’s Fishy

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.

 

 

 

 

 

4. Soy what?

Photo: MCWMeng/Dreamstime

Photo: MCWMeng/Dreamstime

Soy such as tofu, soy milk or edamame, as well as almonds, oats and barley lower cholesterol.  In addition, oatmeal can help regulate blood sugar levels which is important for diabetic diets.  (However, if you have a family history of breast cancer, it is not recommended you add soy to your diet).

 

 

 

 

 

 

 

 

5. Tea Time

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.

 

 

 

 

 

 

 

6. Got Milk?

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.

 

 

 

 

 

 

 

 

7. Sweet Dreams

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.

 

 

 

 

 

 

 

 

 

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.

Cast of Caregivers Cover FINAL jpegTo 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

 

©2016 Sherri Snelling

Nancy Reagan’s Caregiving Legacy

Nancy Reagan cropThe passing of former First Lady Nancy Reagan on Sunday had our CEO Sherri Snelling reflecting on her advocacy for family caregivers and especially for Alzheimer’s research. Read Sherri’s article that was published on PBS Next Avenue:

Nancy Reagan’s Caregiving Legacy

 

Glen Campbell’s Legacy: Music and Awareness of Alzheimer’s

Glen and Kim Campbell dreamstime_m_23475186 (2)

Glen and Kim Campbell right after his Alzheimer’s diagnosis

I was thinking about the Grammy Awards just a couple of years ago when Glen Campbell took the stage after telling the world he had Alzheimer’s disease. It was a powerful, moving moment.

I have had the privilege of interviewing Kim Campbell and her daughter, Ashley, with music legend about their caregiving journey for a husband and a father diagnosed with Alzheimer’s disease. The Campbell family’s poignant story is captured in my interview for this article that was originally published on PBS Next Avenue in 2014. The documentary which was released in 2015, I’ll Be Me, is now available on DVD.

Glen Campbell’s Final Farewell Tour Captured in Poignant New Film

 

 

Glen and daughter Ashley during his farewell tour

Glen and daughter Ashley during his farewell tour

Music Can Soothe the Soul of Caregivers and Their Loved Ones

Where words fail, music speaks. – Hans Christian Andersen

the-little-mermaid bookAs the world watches the Grammy Awards tonight I was reminded of a story about one of my favorite authors whose first love was song.

As a little girl I loved the fairy tales from Hans Christian Andersen, The Little Mermaid, The Ugly Duckling, The Snow Queen. While seemingly written for children, the stories transcend age and even mature audiences revered the chronicles of characters that were resilient in the face of many challenges and obstacles.

What many may not know is that Anderson’s first love was music. He was an excellent soprano and as a young teen entered the Royal Danish Theater in his native Denmark. But as his voice changed, he had to change his dreams and began writing about those whose passion had to find another course. Not all of Andersen’s stories had the typical happily ever after endings but they spoke on a deeper level to readers who could survive even if the spark of a dream was extinguished. It has been observed by Andersen biographers that when Andersen had writer’s block, he would listen to music.

 

 

Music That Feeds the Soul

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

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

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

The Magic Brain Workout Is Music

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

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

I recently wrote an article for PBS Next Avenue about a singing app, SingFit, that not only helps dementia patients but many seniors in assisted living environments as well as the family caregivers caring for a loved one with Alzheimer’s at home.

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

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

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

A new YouTube song, Dignity by Anderson and Petty, also helps us understand the stigma of Alzheimer’s disease and how music can help erase those barriers. All proceeds from the song go to the Alzheimer’s Society, the leading UK dementia research and advocacy organization.

Music as therapy is not just for your loved one.  We know that caregivers encounter increased stress over caring for a loved one.  Since studies show that listening to music can lead to increased secretion levels of melatonin, a hormone associated with mood regulation, lower aggression, reduced depression and enhanced sleep.  Using music to cope with these common caregiver complaints can be a welcome relief to caregiver burn-out.

Groovin Puppy dreamstime_3978556 (2)How to Use Music in Your Caregiving Plan

Although the 2008 documentary Young @ Heart, showcased a chorus of 80-year-olds singing Beatles, Rolling Stones and Sonic Youth cover songs, most experts agree that with an older loved one it is best to choose music that reminds them of an earlier, happier time in their lives.

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

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

When a couple danced together for the first time after five years of the husband’s deterioration from probable Alzheimer’s disease, the wife said: “Thank you for helping us dance. It’s the first time in three years that my husband held me in his arms.” Tearfully, she said that she had missed him just holding her and that music therapy had made that possible.

© 2016 Sherri Snelling All Rights Reserved

An NFL Wife Tackles Dementia

Sylvia Mackey bio photoAs millions tune in to the Super Bowl this Sunday, I am cheering for one football wife who tackled her husband’s dementia with a game plan to keep their lives as normal as possible and in the process found her calling as a caregiving advocate.   Her passionate plea to the NFL, one of the most powerful organizations in sports, resulted in the “88 Plan,” a break-through long-term care plan that gives security and support to former players and their families when it comes to brain-related illness.

While this story is about caregiving, football and dementia, at its heart, this is a love story.

 

 

 

 

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 would be his wife – on the sidelines of his entire career – who would become the warrior at the center of the action.

When John Mackey, No. 88, was inducted into the Pro Football Hall of Fame in 1992, he was only the second tight end to receive the honor.  He was and still is considered one of the best tight ends to ever take the field.  In fact, Mike Ditka, himself a Hall of Fame player and the first “pure” tight-end to be inducted into that rare club of exceptional players, stated that Mackey should have been first.

john-mackey nfl baltimore colts from WebAs a Baltimore Colt, where he played all but the last year of his career, John scored one of the most famous plays in NFL championship history.  It was Super Bowl V played in 1971, that John caught the nail-biting pass from 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 that 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 toughest 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 that this diagnosis could have sacked her (in football parlance) but instead she did not let this devastating news knock her down.  One incident that highlights the special challenges that dementia caregivers face was played out at the Baltimore/Washington International Airport.

“John and I were on our way to the Super Bowl – 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,” said Sylvia.

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, refused to remove these items and place them on the conveyor belt to be scanned.  In his mind, he did not understand that 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 and took him off to jail.

All the while, a tearful and frightened Sylvia was trying her best to explain to the agents and the curious onlookers that her husband was the NFL great and one of Baltimore’s favorite sons, John Mackey, that his illness meant he had no ability to understand what was happening, and ultimately she begged the officers to let her proud husband go.  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 that “Courage is grace under fire.” 

When Sylvia caught up with her husband at the police station, John was back to his typical, jovial, social self – signing autographs for many of the police officers who finally recognized the NFL great.  It was at this moment as her husband basked in the bright light of his fame, that 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 Super Bowls or other travel 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 that 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 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.

And, these special plans are not just for those with famous last names.  One lesson all caregivers can take from Sylvia’s travel strategy is to plan ahead and ask a lot of questions.  Most airports will work with caregivers on the special travel needs of their loved ones.

The Final Play

JohnandSylviaMackey (2)Sadly, John Mackey lost his battle with dementia and passed away in 2011.  A few years 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 that many back-up players make in one season today.  The LTC plan was championed by current Commissioner Roger Goodell and was adopted by the NFL in 2007.  The “88 Plan,” was named to honor Mackey’s jersey number and provides retired players suffering from Alzheimer’s disease, dementia, ALS or Parkinson’s disease with $88,000 annually for long-term care or adult day care or $50,000 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.

As the Giants and Patriots prepare to square off in Indianapolis in Super Bowl XLVI, Sylvia’s message to all caregivers on this game day – and every day – is to “Prepare.  Prepare.  Prepare.”

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

Cast of Caregivers Cover FINAL jpeg