Care for the Caregivers
by Laurie Long, 10/06
"There are only four kinds of people in the world:
Former First Lady Rosalynn Carter |
In the U.S., nearly 30 million family caregivers provide personal assistance to adults with a disability or chronic illness. Family caregiving is a critical piece of our long-term care system. In fact, family and other unpaid caregivers provide nearly 80% of all long-term care in this country.
But who cares for the caregivers? Research suggests that the physical and emotional demands on caregivers take their toll on caregivers’ health. Caregivers are more at risk from colds, flu, heart problems, diabetes and cancer. Depression is twice as common among caregivers as among the general public. Caregivers also tend to ignore their own physical and emotional needs. Research by the Brain Injury Resource Foundation shows that caregivers have a 63% higher rate of death than non-caregivers of the same age.
Bob Fuller wants to help change that. Bob is a retired RN and long-term survivor of a partner who died of AIDS. He is a volunteer for Dunshee House and the facilitator for their caregivers’ support group “Shoulders”.
Dunshee House started in 1984 as the Seattle AIDS Support Group. “Shoulders” support group started as an AIDS caregiver group in 1985 and split into many individual subgroups. Today, it has been revived as an emotional support group for partners, friends and family members who are caregivers for people living with chronic and/or debilitating illnesses. Bob has been working with David French, the Volunteer Coordinator for Dunshee House, to launch their new support group. “What we would offer,” states Bob, “is a time and a place for people to gather and to share their experiences.” David French explains, “This is a free support group. You don’t have to register. You don’t have to call in ahead of time. You don’t even have to give your name.” Bob adds, “This group is about taking care of yourself, about compassion and about wellness. Caregivers put themselves last,” he says. “They don’t address their own needs. I believe that there is time enough, space enough and love enough to meet all our needs.”
Even though the services provided by informal caregivers is an estimated $196 billion per year, assistance for caregivers has been sadly lacking. In the state of Washington alone, more than 540,000 family caregivers are assisting adults with chronic illnesses and disabilities. Approximately half of primary caregivers provide care with no outside assistance whatsoever. Having assistance and resources available is the first step to help ease the burden of these caregivers.
The Crisis Clinic Caregiver Information and Assistance Program in Seattle provides information, assistance and referrals, telephone and in-person support, respite care services and a caregiver website with tips on caregiving and resources for caregivers. Some of their most important recommendations are planning, education, and seeking and accepting support from others.
One caregiver explains, “I’ve tried to be self-sufficient, but I realize I can’t do it alone. It’s a humbling experience to realize that I need the help of others. So when I’m anxious or overwhelmed, I talk it out with people who offer emotional support.”
Bob Fuller agrees. He had what he calls the ‘super-nurse syndrome’; the idea that he should be able to cope with caregiving duties and a full-time job without assistance or support. “Going it alone,” he says, “got to be pretty lonely.” Bob shows that caregivers don’t have to go it alone. He encourages caregivers to give themselves permission to take a break and get assistance in their caregiving duties. Several respite care programs in Washington provide in-home and adult day services on both a planned and emergency basis (see resources below), and this is just one of a number of resources available to caregivers. Bob says, “I’d like to create a prescription pad and hand out prescriptions that say ‘Take one week off!”
Bob also notes that caregivers often don’t avail themselves of the assistance of friends and family to help ease the burden – even for simple things like shopping or transportation assistance. One person explains, “As caregivers we sometimes become so involved in the day-to-day efforts to keep things going, we may forget to let others know we need additional assistance with providing care, or just need a break from the routine of caring for someone.”
Providing access to resources for caregivers is one major step. Networking with other caregivers is another. Bob’s main focus is providing the emotional support and compassion that caregivers need in a comfortable environment. “If I was at home pretty much every day,” he muses, “It might be nice on a Tuesday evening to say ‘I’m going to my group.”
“Shoulders” meets at Dunshee House (www.dunsheehouse.org) every Tuesday evening from 7:30 – 9:00 pm. For more information on this group, contact Bob Fuller at 206-328-7821 or meebob22@yahoo.com. For more information on other Dunshee House programs contact David French, Outreach/Volunteer Coordinator at 206-322-2584.
Caregiver Resources – WA
Crisis Clinic Caregiver Info and Assistance Program – 206-461-3210 x626
Respite and Crisis Care Coalition of Washington – 877-964-0600
Washington State’s Respite Care Program - 800-422-3263
COPES – State contracted home-care services for King Co. - 206-341-7750
Catholic Community Services Homecare (CHORE) - long-term home care and personal care - 800-310-5654
Volunteer Chore Services – 425-284-2240
Faith In Action – volunteer caregiver services in Issaquah Area - 425-391-2817
Senior Services Caregiver and Outreach Support Program - for adults over 60 or for adult children over 18 - 888-435-3377 / 206-448-3110
Meals on Wheels - Persons 60 years of age or older who are homebound due to illness or handicap - (206) 448-5767
Mobile Market - Online grocery shopping for seniors - www.seniorservices.org/nutrition/mow.asp
Caregiver Resources on the Internet:
www.crisisclinic.org/caregiver.html
www.aoa.gov/prof/aoaprog/caregiver/caregiver.asp National Family Caregiver Support Program
www.aasa.dshs.wa.gov/topics/caregiving/factsheet.htm#FCSP Washington State Family Caregiver Support Program (FCSP)
www.caringtoday.com Practical Advice for the Family Caregiver
www.seniorservices.org/caregiver/caregiver.htm Caregiver Outreach and Support Program
www.dunsheehouse.org Dunshee House
Books On Caregiving:
How to Take Care of You – So You Can Take Care of Others Author: Sue Vineyard
In the Shadows – Living and Coping with a Loved One’s Chronic Illness Author: David Luderman, D. Ed.
The Fearless Caregiver: How to Get the Best Care for Your Loved One and Still Have a Life of Your Own. Editor: Gary Barg
The Selfish Pig’s Guide to Caregiving Author: Hugh Marriott
Bibliography and Resources
Interview with Bob Fuller, Retired RN and Facilitator for the “Shoulders” Caregiver Support Group
Caring Connections. “Caring for the Caregiver: Acknowledging You Need Assistance.” http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3443
Crisis Clinic. “Ten Tips for Caregiving.” www.crisisclinic.org/caregiver2.html
U.S. Dept. of Health and Human Services Administration on Aging. “Because We Care.” 9/04 http://www.aoa.gov/prof/aoaprog/caregiver/carefam/taking_care_of_others/wecare/wecare.asp
National Family Caregiver Support Program Resource Room: About NFCSP. www.aoa.gov/prof/aoaprog/caregiver/overview/overview_caregiver.asp
Caregiving Topic Center – Aging and Adult Services Administration. “Caregiving Fact Sheet.” www.aasa.dshs.wa.gov/topics/caregiving/factsheet.htm
Well Spouse Association. “Dana Reeve, Caregiver.” http://www.wellspouse.org/index.php?option=com_content&task=view&id=21&Itemid=2
Mitchell, Gail. “Family Caregivers Are Given More Than They Can Handle.” National Organization for Empowering Caregivers, 1999. http://www.care-givers.com/DBArticles/pages/viewarticle.php?id=5
AARP. “Who’s Caring for the Caregivers? AARP Unveils New Report on Trends in Support for Family Caregivers.” AARP 3/16/2006. http://www.aarp.org/research/press-center/presscurrentnews/caring_for_caregivers.html
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