LTC Bullet:  The Fearless Caregiver

Friday, March 13, 2015

Seattle—

LTC Comment:  Informal family caregiving is a huge and growing challenge that the Fearless Caregiver took on two decades ago.  Today, he provides an exceptional set of helpful resources.  Information and links after the ***news.***

*** FRIDAY, THE 13TH and two days before his birthday on the “Ides of March.”  What better time to introduce you to the “Fearless Caregiver.”

*** 2015 LONG-TERM CARE INSURANCE SUMMIT:  It’s on!  Scheduled for October 27, 2015 in Washington, DC.  Get all the details here. ***

*** FAMILY CAREGIVER DIALOGUE:  “This March, the Family Support Research & Training Center at the University of Illinois at Chicago and Easter Seals are joining together to support a national research initiative Family Support: Tell Us What We Need to Know.  From March 9 to March 30, 2015, a national dialogue will be available for family caregivers, individuals with disabilities, providers and researchers to provide feedback on the topic they think family support researchers should explore further.  Whether it’s the practical day-to-day concerns about providing assistance; healthcare, transportation or education; or the financial, spiritual or emotional aspects of being a family caregiver, the comments provided during the survey period will be used to shape a strategic plan for family support research in the U.S.  We look forward to hearing what’s important to you!”  Details here. ***

*** OLDER AMERICANS MONTH 2015 materials available, including a poster series, sample social media, event ideas, document templates, and more.  The Administration for Community Living (ACL) has published outreach materials to support communities celebrating Older Americans Month this May.  The 2015 observance theme, “Get into the Act,” honors the 50th anniversary of the Older Americans Act and emphasizes older adults taking charge of their health and getting engaged in their communities.  Details at the Older Americans Month section of the ACL website. ***

 

LTC BULLET:  THE FEARLESS CAREGIVER

LTC Comment:  Here’s the challenge of informal family caregiving in a nutshell from an April 2014 government study “Informal Caregiving for Older Americans: An Analysis of the 2011 National Health and Aging Trends Study.”

In 2011, 18 million informal caregivers provided 1.3 billion hours of care monthly to the more than 9 million older adults receiving informal assistance. Consistent with prior studies, family members are the main source of informal care: Spouses are about 20% of caregivers and provide nearly one-third of the aggregate hours, and adult children provide nearly half of aggregate hours. Hours are concentrated among caregivers of high need recipients--the 31% assisting recipients receiving help with at least three self-care or mobility tasks and the 33% assisting persons with probable dementia, account for nearly half and 40% of aggregate hours, respectively. Informal caregivers provide an average 75 hours per month. Average monthly hours provided are significantly more for spouses (110) and other caregivers living with the care-recipient (114) and those assisting higher need recipients with self-care or mobility (84).

Even if you’re not a caregiver and don’t anticipate becoming one, this issue affects you as a tax payer and as a potential recipient of future highly vulnerable government benefits.  According to Valuing the Invaluable: 2011 Update The Growing Contributions and Costs of Family Caregiving:  “The estimated economic value of their unpaid contributions was approximately $450 billion in 2009, up from an estimated $375 billion in 2007.”   The burden of formal paid long-term care on the federal budget is huge and has vast ramifications as we explain every January in our LTC Bullet:  So What If the Government Pays for Most LTC?, 2013 Data Update.  If it were not for the “free” care provided by friends and family, the extra burden of formal paid care on government programs would overwhelm them.

The Fearless Caregiver

Into this breach steps the “fearless caregiver.” He’s sort of a super-hero in this field full of heroic family caregivers.  Gary Barg’s story is fascinating.  He became a caregiver over 20 years ago for a grandparent.  But let him tell you in his own words from his Today’s Caregiver website.

I heard it in her voice. She never asked me to return and help, but I knew by the distress in her voice that things were not as rosy back home as I had thought. The year was 1994, and I was living in Atlanta, Georgia. My mom had been primary caregiver for my Dad and my grandparents over the past few years and over those years, I would return home as often as possible to help in whatever way I could. But, this late August night, I heard something in her voice that made me realize that more was needed of me, and fast. I thought I would spend about a month in Miami, where my mom and the rest of my family lived; help my mom care for my grandparents and then return home to Atlanta. Simple, right?

 

Not really. Within minutes of returning to Miami, I found myself wondering how my mom was able to do all she had been doing as a caregiver. It was in and out of doctors' offices, endless hours on the phone with insurance companies, midnight dashes to the hospital, life and death decisions, heartaches and stress. And we were not alone. Not by a long shot. We would find plenty of other people like us, rushing around trying to do the best for their loved ones with little or no information, but always with enough time to share whatever information they learned which they thought would be of value to fellow caregivers. We decided to do something to help others as they were helping us. The first issue of Today's Caregiver magazine debuted July fourth, 1995 (our own independence day), caregiver.com was born shortly thereafter and the "Fearless Caregiver" annual caregivers conferences began in 1998. We have met thousands of dedicated professional and family caregivers, interviewed over 100 celebrity caregivers and hopefully helped a few caregivers along the way. I know that the caregivers we've met have been of invaluable help to us as family caregivers.

 

Even though we have been "out here" since the mid-Nineties, we know that this is just the beginning. We are proud to have been able to bring together some of the brightest and most caring people to write for caregiver.com and Today's Caregiver magazine and to speak at our conferences. We invite you to take advantage of their wisdom and e-mail us your questions, join our free internet newsletters and interact with the other caregivers visiting caregiver.com. We welcome you to our home on the Internet, hope you stick around a while and look forward to helping you in any way possible. 

Caregiver.com

Gary Barg’s story is one so many of us have experienced in our own unique ways.  But his experience led him to a career specialized in helping family caregivers.  His website Caregiver.com is a virtual super-market of resources for long-term caregivers.  Here are some examples of things you’ll find there:

Next Step

If you’re not familiar with these resources, check them out.  Subscribe to the free newsletter.  Tell your friends, family, prospects, and clients about Caregiver.com.  You’ll be doing all of them a good deed and maybe even stir up some interest in early and responsible long-term care planning.