My Favorite Things – CareLinx

My Favorite ThingsOne of our favorite things to do at Caregiving Club is find our favorite services, products and organizations to share with our loyal readers.

We debut the “My Favorite Things” list from Caregiving Club CEO, Sherri Snelling. As part of her role as a national caregiving expert, Sherri advises companies on how to best support caregivers. She serves on advisory boards and often asks these companies to provide a free offer or special promotion for Caregiving Club readers.

Click here to read about the 4 free hours of in-home care you can receive from CareLinx as the first company featured in “My Favorite Things.”

My Favorite Things – CareLinx

 

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Special for Caregiving Club Readers:

Click on the word CareLinx  in this article to receive 4 cost-free complimentary hours of in-home care from CareLinx. Click today to get the help you and your loved one need!

The in-home care arena is a booming sector of aging. We know that 10,000 baby boomers turn 65 every day. And, while we all live longer, we also know from AARP that 89 percent of those over 65 want to continue living in their homes as long as possible.

It’s a perfect storm – an ever-growing aging society who is living longer and desires to live out their years at home – yet who is caught in this silver tsunami? Family caregivers.

A few years ago, in-home care services were mostly bricks and mortar retail agencies – some national companies but many, many more were independent mom and pop operations based in local communities across the country.  Today, there are more than 12,000 in-home care agencies.

According to the Centers for Disease Control (CDC) 7.6 million who have a chronic illness or have been discharged from a hospital after an acute illness are being cared for at home. Much of this care is falling on the shoulders of the country’s 65 million family members who have stepped into a caregiving role, yet there is a physical, emotional and financial toll in caring for loved ones at home.

Consider the often prohibitive costs of in-home care according to Genworth’s annual Cost of Care Survey. The report shows families pay on average $45,760 per year for in-home non-medical care. If the finances are not there, some caregivers are leaving the workforce completely to care for aging loved ones that results in more than $300,000 in lost wages and benefits.

 

The Solution? CareLinx

As the nation’s first and only true online caregiver marketplace, CareLinx launched in 2010 and has grown to a professional caregiver network of 150,000 serving families in the top 50 metros across the U.S.

Why do I like CareLinx? Let me count the ways…

1. Trust

Source: KelleyLattaMinistries.com

Source: KelleyLattaMinistries.com

One of the hardest things caregivers face is how to allow for someone else to come into the home to care for your loved one.  We all know no one else can provide the tender, loving, personalized care that you can however…you are burning out, you need a break, you cannot afford to take any more time off work, you see this caregiving role is a marathon not a sprint.

 CareLinx care professionals are backed by liability insurance from Lloyds of London – the CareLinx $4 million SafeGuard Policy. In addition, CareLinx has done most of the legwork for caregivers – performing exhaustive background checks, ensuring credentials of its professionals and requiring ongoing quality reports from clients.

CareLinx MobileCareLinx professionals check in daily with family members by sending photos and other data of the care provided via smartphone communication with clients. Knowing when Mom gets her special chicken soup, ensuring dad gets a walk around the block or knowing the bedsheets are washed and replaced is the peace of mind elixir most concerned family caregivers need from in-home care service providers.

What is unique? The family gets to choose the professional caregiver they want and how much they will pay – based on perfect matches for the detailed care criteria families provide. As opposed to other agencies that just dispatch the available care professional, both the CareLinx care professional and the family decide to team up to provide the best quality care for the loved one.

This mutual agreement between both families and care professionals is uniquely different from traditional agencies who simply send an available care professional to the home. By offering “choice” to family caregivers and professional caregivers, CareLinx can report higher retention rates than the national average due to the higher satisfaction of both parties.

2. Cost Savings

Piggy-BankOne of the drawbacks or obstacles for families is the cost of having care in the home. Many family caregivers dip into their own pockets and savings or even leave work to provide the care a loved one needs.

If you felt the cost of care was unaffordable, think again. CareLinx consistently delivers 30-50 percent less cost to its clients over traditional agency costs. This is achieved because CareLinx is a dedicated online platform whereas most traditional agencies have overhead with retail stores and marketing costs (those TV commercials you see cost millions of dollars!). They also tack on a 50-150 percent commission fee. CareLinx takes a flat 15 percent fee.

 

3. A Built-In Care Team

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Almost without exception, family caregivers feel alone. This sense of isolation can lead to depression, stress and ultimately other health issues that can severely impact the caregiver.

With CareLinx you have a trusted, reliable resource for giving you a break and ensuring quality care while you are away from your loved one. Whether it’s for just an hour or a few days or a few years, CareLinx has a care team that surrounds you with expertise, compassion and support.

 

In addition to the CareLinx care professional you contract with, CareLinx also has Care Advisors who can guide families through the process, answer questions and are there to respond telephonically 24/7.

One reason CareLinx has grown so fast and has accumulated accolades (everything from a AAA rating from the Better Business Bureau to winning the Consumer Vote at a recent AARP Convention) is at the heart of the company is the soul of a caregiver. The company is powered by technology but it never forgets it is a caregiving service provider.  All the snazzy, bells & whistles apps created by tech geniuses in Silicon Valley cannot replace good old-fashioned compassionate caregiving.

CareLinx CEO Sherwin Sheik traveled the caregiving road with both his sister who has multiple sclerosis and his uncle who suffered from ALS. He knows that families need help and that the help needs to be affordable. He walked away from a lucrative senior executive health care job to start CareLinx.  He knew he could deliver the promise of better quality care in the home without breaking caregivers’ piggy banks.

In fact, most of Sherwin’s senior team at CareLinx have been a family caregiver – some to parents, some to spouses and other loved ones.

My Favorite ThingsAs part of my role on their advisory board, CareLinx is offering Caregiving Club readers something really special: Four (4) hours of free in-home care by clicking this link: CareLinx.

Let CareLinx become part of your care team today.

 

 

 

 

 

 

Liability Disclaimer: Sherri Snelling is a paid advisory board member of CareLinx. While her strategic counsel, spokesperson and other duties are paid by CareLinx, neither Sherri Snelling nor Caregiving Club are paid for clicks, links or new clients such as an affiliated marketing or sales arrangement. While Sherri Snelling provides her opinion of CareLinx, neither Sherri Snelling nor Caregiving Club guarantees the quality and satisfaction of the CareLinx services experienced by individual CareLinx client and thus, disclaims any liability that may result from your involvement with CareLinx.

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Jodi Foster’s Sandwich Generation Moment

Three years ago, Hollywood actress/director, Jodie Foster received the Cecil B. DeMille Award for a Lifetime Achievement in Film at the Golden Globes ceremony. While Foster’s accomplishment in movies is formidable it was her heartfelt speech that night about her mother that riveted the audience and TV viewers.

For more than 7 minutes she commanded the stage and a worldwide audience in an emotional stream of consciousness as this most private of celebrities shared intimate thoughts about her mother, Evelyn “Brandy,” with dementia in the same way she has shared her art with us through her compelling film performances for four decades.

She spoke directly into the camera as if the crowded room of Hollywood luminaries and millions of viewers at home went out of focus and she was speaking to the single mom who held her 53-year-old daughter’s hand through show business since she was three years old.

“Mom I know you’re inside those blue eyes somewhere and that there are so many things you won’t understand tonight,” said a teary Foster. “But this is the only important one to take in:  I love you, I love you, I love you.  And I hope that if I say this three times, it will magically and perfectly enter into your soul, fill you with grace and the joy of knowing that you did good in this life.  You’re a great mom. Please take that with you when you’re finally OK to go.”

jodie-foster-and-her-mother-evelyn-gettyimagesThis revelation of her 87-year-old mother’s Alzheimer’s disease (although she never said “Alzheimer’s”) was not the first time Foster has talked about her mother’s illness but it was the most high profile and profoundly public acknowledgement of her Sandwich Generation caregiving role. Her young sons, Charles and Kit, were in the audience as their proud mom talked of her boys being the reason she is inspired while she also said her mother was the “greatest influence of my life.”

In a 2010 interview with the Daily Mail in the UK, she said about her mother’s illness, “She’s really a new person, not the mom I grew up with, and I have a real nostalgia for who she was. She spent years and years alone because she never remarried after my father left and she raised us by herself.  She used to say: ‘I’m an only child so I prefer to be alone,’ and she didn’t keep up with her friends.”

According to the Alzheimer’s Association, more than 5 million Americans and 36 million people worldwide are diagnosed with dementia and an additional 17 million Americans care for someone with dementia or Alzheimer’s disease (the most common type of dementia).  In fact, every 67 seconds someone new develops the disease and while early on-set Alzheimer’s can be diagnosed when someone is in their 40s or 50s, one out of every two people age 85 or older will develop dementia.

Jodie Foster joins the ranks of the 24 million Sandwich Generation caregivers – those caring for children still at home while simultaneously caring for an older parent – including high-profile caregivers such as Diane Keaton, Maria Shriver, Brooke Shields, Joan Lunden and Holly Robinson Peete.

While some caregivers of those with Alzheimer’s find it hard or almost impossible to care for their loved one at home because of violent outbursts, sundowning (extreme paranoia and frightfulness that can including screaming that begins at dusk) or wandering off, Foster has stated she will keep her mom in her home as long as possible.

When asked in an interview if she would consider seeking residential care for her mother, she said, “Oh God no way. I’m going to feel good — I’m going to feel that the end honored her and that she didn’t have to lose her dignity.

“Dementia is an interesting thing,” continued Foster. “It’s the hardest thing I’ve been through and yet also strangely sacred… I’m just here to care for her. I have no axe to grind. Mine will be the last face she sees.”

Jodie Foster has never wished to be a symbol for her choices in life: Child actor free of scandal (if you don’t count the pre-pubescent prostitute she played in Taxi Driver which had some people up in arms); college co-ed career disrupted by a would-be presidential assassin (that forced her even further into her privacy shell); actor turned director (whose latest offering is Money Monster starring George Clooney and Julia Roberts opening this month); but I would love it if the Sandwich Generation could count on Jodie to continue to raise awareness for a role many of us will play in life: caregiver.

©2016 Sherri Snelling

Difference in Caring for Moms versus Dads?

Grandma, Granddaughter 3 dreamstime_m_22574735 (2)Sometimes the physical aspect of caregiving is the same for older parents – helping feed, bathe, transport them. But the emotional and communication side of caregiving can be very different when it comes to caring for our Moms versus caring for our Dads. Read our CEO Sherri Snelling’s article for PBS Next Avenue about the Difference in Caring for Moms versus Dads.

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

November 11 – Veteran’s Day

 

 

 

nov-veterans-day-2016

Every year we honor our veterans and their sacrifices – including the sacrifices of military families – to provide peace and freedom for America.

Veteran’s Day was established after the end of World War I – known as the “war to end all wars” – when a peace treaty was signed at Versailles, Paris on the eleventh hour of the eleventh day of the eleventh month between the Allied Forces and Germany. Thus, November 11, will forever be the day we honor those brave soldiers, sailors and other military from that war and every war since.

We know that 10 million Americans are providing care for a veteran – and 7 million of these caregivers are veterans themselves. Caregiving Club recognizes your special caregiving duties on this day (and every day) and thanks you for being our “heroes on the homefront.”

Our CEO Sherri Snelling (whose family members have fought in every U.S. conflict since the Revolutionary Way) takes special care to highlight the challenges of the caregivers of veterans. She was proud to be part of a landmark study conducted by the National Alliance for Caregiving and UnitedHealth Foundation, Caregivers of Veterans – Serving on the Homefront.

In addition, here are some of her articles and interviews with caregivers of veterans:

Caring for those with invisible wounds  (originally published on Huffington Post)

Boomer Parents Caring for a Veteran Son with TBI (originally published on PBS Next Avenue)

Rosalinda & Alain Babin – Boomer Parents Proud of Wounded Warrior Son (originally published on Caring.com)

Libby Hewes- A Veteran’s Caregiver Goes from Newlywed to Nurse (originally published on Caring.com)

Enlist now to help caregivers of veterans (a Memorial Day message from Caregiving Club that can be done anytime throughout the year)

Also, watch our Me Time Monday video on tips for caregivers of veterans:

 

November – National Hospice Month

nov-hospice-month

Hospice is something many caregivers face at the end of their journey.  It is in this “twilight time” that we realize how important end-of-life wishes are for our loved ones. During this stage you may also encounter palliative care – a transition before hospice care where a loved one with a terminal illness may still seek cures such as chemotherapy or a clinical trial.

In both hospice and palliative care settings, the team-oriented approach of bringing the patient, health care professionals, the family and a spiritual advisor together is a model for how all health care should be treated: physically, emotionally, medically, socially and spiritually for the patient and their family.

Our CEO Sherri Snelling has focused on the importance of end-of-life discussions for family in her articles below:

I Have a Dream – Helping Loved Ones Achieve End-of-Life Wishes

What We Can Learn From Brittany Maynard’s Death (originally published on PBS Next Avenue)

Casey Kasem’s Legacy for Caregivers (originally published on Forbes.com)

Why You Need to Make Your End-of-Life Wishes Known (originally published on PBS Next Avenue)

Cast of Caregivers Cover FINAL jpegOur CEO, Sherri Snelling, wrote about hospice and palliative care in her book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care,

 

 

 

 

June is Elder Abuse Awareness Month

JUN Natl Elder Abuse Month

June is National Elder Abuse Awareness Month. The dark side of caregiving is that our senior population is vulnerable to abuse – financial, physical, emotional. The abuse can come from strangers such as identify theft or fraudulent schemes, from the neglect of professional caregivers, staff and even other residents at long-term-care facilities, and even from family members who are overwhelmed and frustrated from their caregiving role or simply not well enough trained to properly care for their loved one.

Read our CEO Sherri Snelling’s articles on the story of famous radio DJ, Casey Kasem, showcasing the dark side of caregiving:

Casey Kasem’s Legacy for Caregivers (Forbes)

Dark Side of Caregiving – Elder Abuse News (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