On June 29 I attended the Fearless Caregiver Conference in Orlando, the first such conference held in that city and the 109th Fearless Caregiver Conference. These events, now in their fourteenth year, are held across the country; here's the 2011 schedule. Tickets are available for free to family caregivers. Credit hours are available for professional caregivers.
Said keynote speaker Scott Latimer, MD, MPH, MBA (Market President for Senior Products, Central/North Florida for Humana), "You are a caregiver if you help keep someone independent and improve their quality of life." (Latimer also spoke in his address about the Patient Protection and Accountable Care Act.)
Some of what I learned (there was much more, but this is what I caught) included, in no particular order:
National/International in Scope
Social Service Checkup connects people with discounts and community assistance programs.
Benefits Checkup (a service of the National Council on Aging) allows people to find and enroll in federal, state, local and private programs that help pay for prescription drugs, utility bills, meals, health care, and other needs.
My Med Schedule, a secure website, allows people to organize and keep track of medications.
eCare Diary is a set of online tools designed to make coordination of care and sharing of information easy amongst family members and other caregivers.
VA Caregiver Support, part of the U.S. Department of Veterans Affairs, provides support services to caregivers of veterans.
Healthcare.gov, part of the U.S. Department of Health and Human Services, provides information about available private insurance plans, public programs, and community services.
Medicare.gov is the official U.S. Government site for Medicare.
For evaluating doctors: Vitals and Healthgrades, which I've used; and Rate MDs, which was new to me.
Caregivers in Recovery Network is an online support forum for family and professional caregivers in 12-step recovery.
Alzheimer's Disease International helps caregivers of people with Alzheimer's Disease and other dementias.
National Federation of Families for Children's Mental Health is an advocacy organization that works with family-run and other child-serving organizations.
SAGE (Services and Advocacy for Gay, Lesbian, Bisexual, and Transgender Elders) provides support to GLBT caregivers if one or both of the people involved is over 60. (I'd already known about this organization.)
The Harry and Jeanette Weinberg Foundation, Inc., Family and Informal Caregiver Support Program supports innovative and evidence-based community projects that help family and friends care for chronically ill or disabled low and moderate income older adults.
As part of my own caregiving, I have already been involved with the National Alliance on Mental Illness, and have for several months been attending meetings of my local chapter. I connected on Wednesday with representatives of the Orlando chapter.
Florida
Florida Agency for Health Care Administration administers the Medicaid program, oversees the licensure and regulation of health facilities, and provides information to Floridians about the quality of the health care they receive.
Caregiver Central is part of Share the Care, a not-for-profit organization whose mission is to provide community-based support for family caregivers in Orange and Seminole Counties.
I was told that Meals on Wheels (Florida), in addition to its senior meals program, is a source of information on what local services are available for people and their caregivers.
There were at least 60 of us attending, probably more. Attendees took care of people ranging in age from their 20s (maybe their teens) to age 98. The morning consisted of parallel tracks, one for family caregivers and one for professional caregivers. The family caregiver track had a morning Q&A Panel with Denise Clark (DO, Associate Medical Director, VITAS Innovative Hospice Care); Mearlene Filkins (LCSW, Caregiver Support Coordinator, VA Caregiver Support Program); Randy Hunt (MBA, Executive Director, Senior Resource Alliance); and Lori McKewen (RN, Complex Case Manager, WellMed Medical Management).
In addition to asking questions of the panelists, we shared info and answered each other's questions as well. On the feedback survey, I indicated that I thought the conference could use more of this peer sharing, since we have our own lessons learned and war stories. Among the information I provided was some of what I've learned from reading Dr. Xavier Amador's book I Am Not Sick, I Don't Need Help! and viewing his LEAP Institute website (which I had learned about on the NAMI forums).
Gary Barg, editor-in-chief of Today's Caregiver and founder of Caregiver.com, emceed. He joined Dr. James Huysman, PsyD, LCSW, CAP, in professional and family caregiver conversations. (Huysman had given "Caregiver Standards and Practice Interventions" during the morning's Professional Track.) For a taste of what these conferences are like, here's a portion of Gary's speech from an event in Nashville last year. More videos are on the Fearless Caregiver Channel.
Lunch -- a very nice salad, sandwich, and dessert -- was included, and coffee was free-flowing throughout. Otherwise, I scoured a room filled with tables staffed by the Alzheimer's & Dementia Resource Center; BioDerm, Inc.; Caregiver.com; Florida Council on Compulsive Gambling; Florida Medicaid Specialists & Paralegal Services, Inc.; Horizon Bay; Humana MarketPOINT; Jewish Family Services of Greater Orlando; Mental Health Association of Central Florida; Molift, Inc.; NAMI Greater Orlando; National Association of Social Workers; The Scooter Store; Senior Resource Alliance; Share the Care, Inc.; Spring Hills Home Care Services; Spring Hills Lake Mary; VA Caregiver Support Program; VITAS Innovative Hospice Care; WellMed Network of Florida, Inc.; and the Well Spouse Association support for spousal caregivers (including same-sex partners; I found that out because I asked).
During the break, I picked up two copies of Barg's book The Fearless Caregiver: How to Get the Best Care for Your Loved One and Still Have a Life of Your Own, one to give as a gift.
Tidbits that I remember:
"The two most important three-word sentences: (a) 'I love you,' and (b) 'Who's your supervisor?'"
"You can fire your doctor."
(I've put those into operation.)
Journaling for caregivers is something I've also put into practice, especially since journaling comes naturally to me. In addition to being a tool for self-reflection, it's a way for me to document what I observe.
I live 90-odd miles from Orlando, but someone mentioned that one could have dental work done at a dental school there, to save costs. A $6,000 procedure had been performed at a cost of $150.
More tidbits:
--> The importance of registering with county emergency services and special needs shelters.
--> The importance of maintaining a personal/professional relationship with one's pharmacist.
--> Finding out care management, case management, and outreach programs provided by one's insurance carrier.
Now to process and use this wealth of information.
