Posted by on Jun 24, 2013 in Blog | 3 comments

Caregiver – you are not alone!

If you’re a caregiver and you are wondering where the other caregivers are, all you have to do is look to your left or right.  New research from the Pew Research Center’s Internet and American Life Project, tells us that in three years the number of adults working to care for an adult or child with serious illness has grown 9%.  The increase, from 30% in 2010 to 39% in 2013 is cause for what? Alarm? Amusement? Or just time for another Analgesic (that’s an aspirin for all of us who aren’t health wordsmiths).

Okay, what’s the story?

Susannah Fox, associate director of the project and co-author of the June 20, 2013 publication states, “We are starting to see the effects of an aging population AND the financial pressures that many people are facing, especially in the “sandwich generation.” Instead of outsourcing nursing care, people are stepping up to the task, like it or not, trained or not.”  She quips, “It…surprised the heck out of me… I went looking for a tech story and stumbled on a major economic and demographic story.”

The estimated economic value of family caregiving, in 2007—obviously old data but non-the-less revealing–was $375 billion, a figure that exceeded the total 2007 Medicaid expenditures of $311 billion and approached total expenditures in Medicare of $432 billion.  That is almost twice as much as is actually spent on homecare and nursing home services combined ($158 billion).  So family caregiving is a huge, unrecognized, hidden piece of the healthcare economic landscape in the US.

However, in the 2013 research, Ms. Fox is referencing the age and economic combination that is the push- me-pull-you of today’s caregiving:  those in the workforce, 30 to 64 year olds, are doing much of the caring and experiencing the cost in lost income, stress, fatigue, financial insecurity, guilt, you name it.

A striking number, 75%, of those 65+ are living with a chronic health condition. It is untrained, over-extended, uncompensated, non-medical family and friends, that are managing the complexities of caring.  In some cases, family and friends are engaged in tasks once reserved for nurses, says Claudia Nichols, founder of Pilot Health Advocates, Inc, a private patient advocacy firm helping consumers navigate healthcare.  She says, “the task of the family caregiver is swiftly morphing into performing sophisticated skilled nursing tasks, including dialysis management, administering IV’s, wound care (an especially difficult task for amateurs and professionals alike) and other professional skills.”

Getting help online

Returning to the Pew Findings, it seems that caregivers are looking for help online. Be it obtaining support, looking for health information on treatments, drugs, medical concerns, or tracking their own health, online is their “thing.” Controlling for all kinds of factors, like education, ethnicity, overall good health, Ms. Fox and her team found that caregivers are more likely than other adults to be online as “e-caregivers.”

But caregiving for children is also part of the story.  And caregivers like Natrice Rese, are sharing their story online as well.  Ms. Rese cares for her granddaughter who is disabled.  In a twitter chat summarized in January, 2013 she tweeted, “Family caregivers aren’t just there 8 or 12 hours a day.  They live the job, breathe it, think it, sleep little…they need lots of support…  Caregivers contend with personal feelings, grief, exhaustion, fear, and cannot escape from it.”

According to the Pew Center’s research,

  • “59% of caregivers with internet access say that online resources have been helpful to their ability to provide care and support for the person in their care.
  • 52% of caregivers with internet access say that online resources have been helpful to their ability to cope with the stress of being a caregiver.”

Caregivers are online giving support

Robert Harris is best known online as @Rob_Cares, a moniker he adopted after writing a book, We’re In This Together, about caregiving and starting Rob Cares LLC. “When I was told my wife had cancer, a 28% chance to survive and could die in 4 months, [with Leiomyosarcoma, Stage III]  I felt completely lost and helpless. Just like when 9-11 hit us. We didn’t know what to do.  I hated that feeling. As a result, I didn’t want anyone else to feel helpless, like I did.  I also wanted them to read our story and know that it’s okay to love, laugh, cry and feel uncertain.”  Published in July 2012, Rob’s book is a 5 star hit on Amazon and a #1 bestseller in the Physician and Patient Caregiver Category.

Another blog providing information, support and guidance is CaregiverCafe.  Here, the daughter of a patient with multiple myeloma shares her family’s guide to resources specific to caregiving. In Care of Dad was born from the grief of losing a father and the experiences of two daughters who “slog[ged] through, a swamp of medical jargon, insurance questions, medication mysteries…The idea was to share everything we learned, everything we wish we’d known at the beginning of our dad’s illness – from the tools that helped us better manage the situation, to what questions you should ask potential nursing homes, to how does Medicare really work.  Simple, practical and useful information, all in one place.  One-stop shopping.”

Former First Lady, Rosalyn Carter summed it up best:  “There are four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers.”

The upshot is that being online is the caregiver’s survival strategy and kindness is essential in this world because everyone is a caregiver.  So, if the woman bagging your groceries drops an apple or the man serving you a Happy Meal makes a mistake on the register, remember to cut them some slack.  Because they may be part of the nearly 40% of the population juggling caregiving.


“Be kind whenever possible, it is always possible.” –Dalai Lama