OPENING DOORS – Caregivers…the ‘Bedrock’ of the US Healthcare System

Thanksgiving celebrations in our family have become much more flexible and relaxed over the years. Like many families, ours is spread out geographically and has expanded to include spouses whose families also want to celebrate the holiday with their children and grandchildren. So some years we may gather for Thanksgiving dinner on Friday, and the gathering time may be adjusted to accommodate travel, children’s naps and local activities such as charity 5k runs.
But even before our family included spouses and grandchildren, as caregivers for our daughter/sister, Carla, we had experienced the need for flexibility on holidays. One of her extended hospital stays included Thanksgiving week and she was not able to come home even for part of the day.
Though some of her siblings were not initially enthusiastic about the plan, they will never forget that Thanksgiving dinner, warmed in a microwave and shared in the family lounge at Columbia Presbyterian Babies Hospital.
The holiday season poses unique challenges for many families caring for loved ones with special needs. Many of their holiday stories and, for that matter, their everyday lives are studies in patience, dedication, and selflessness. Through it all, family caregivers work tirelessly to maintain some balance in family life so that their loved one will be seen as a person and not just a patient. Though home health assistants may be crucial to caring for the loved one, many family caregivers savor the times when they are alone with just family at home.
If family caregivers tend to downplay their contribution of time, support (physical and emotional) and dedication to their loved ones, their economic contribution to this growing need in our society is almost never considered. Interestingly, it is never mentioned in campaign rhetoric. But a hefty contribution it is, and in many cases it is at the cost of the caregivers’ own financial stability!
• The value to the US of the services family caregivers provide is estimated to exceed 375 billion dollars per year; this represents more than twice the amount spent on paid home care and nursing home services combined (approximately 158 billion dollars)
• According to the 2009 Evercare Survey of the Economic Downturn and Its Effect on Family Caregiving, family caregivers are the foundation of long-term care nationwide, exceeding Medicaid long-term care spending in all states
• At least 60 percent of caregivers are employed outside the home but many have had to modify their career aspirations and salary expectations because of their caregiver role
• Almost 50 percent of working caregivers use up all or most of their savings because of escalating caregiving expenses
• The median income of caregiving families is more than 15% lower than that of non-caregiving families; in every state in the US, the poverty rate is higher among caregiving families than among non-caregiving families
Most of this discussion has focused on the contribution of family caregivers. This is in no way meant to minimize the dedication and contribution of paid caregivers, many of whom are very under compensated for their vital support to caregiving families. Also deserving recognition for their unique caregiving role within our communities are organizations such as our local CONTACT Cape-Atlantic whose trained volunteers reach out each day to let people living alone know that someone cares.
Caregiving, and in particular family caregiving, has been described as the “bedrock” on which the US healthcare system depends. At this Thanksgiving season, along with gratitude for our own personal blessings, will we remember to give thanks for this unheralded national treasure — the caregivers in our community?
DID YOU KNOW??
• An estimated 6.9 million “long-distance caregivers” in the US provide care for someone at least an hour away. Caring From a Distance (CFAD) is an organization that serves these caregivers, by researching resources and answering questions and concerns. Contact: www.cfad.org or 202-895-9465.
• The Center for Medicare & Medicaid Services supports an Ask Medicare website (http://www.medicare.gov/campaigns/caregiver/caregiver.html) that provides links to key organizations that help caregivers, and also presents personal stories from caregivers in the community.
• The National Center on Caregiving at Family Caregiver Alliance sponsors the Family Care Navigator (at www.caregiver.org), a comprehensive online guide to help families locate government, nonprofit, and private caregiver support programs in their individual state.
• The New Jersey Department of Health and Senior Services sponsors a caregiving website at www.state.nj.us/caregivernj
• The Parish Nurse Program at Cape Regional Medical Center sponsors a Caregivers Support Group on the 1st Tuesday of each month in the Maruchi Room of the hospital. For more information, contact Bonnie Kratzer (463-4043).
• Caregivers of New Jersey, an initiative of The Family Resource Network, publishes a monthly electronic newsletter, Caregiver Connection. To get on the mailing list, contact Caregivers of NJ at 732-262-8020 or online at www.njcaregivers.org
• If you might be interested in helping to form a local support group for families affected by Muscular Dystrophy, please contact Paulann Pierson at 886-2784.