Family caregivers can play many different roles in the dying process.
By Suzanne Mintz
Family caregivers account for 80 percent of all at-home care services in the U.S. A 1999 survey by Health Affairs placed the value of their “free” daily duties at an estimated $196 billion per year.
But what is the exact role of family caregivers in day-to-day end-of-life care? There is no one answer.
Much depends on the physical and mental condition of the dying person. The caregiver’s most immediate task may be about the most intimate, physical aspects of care: giving baths, helping a loved one eat, get dressed, use the bathroom, or even breathe. Whatever the specific tasks, hopefully it is a time of love and compassion, a time of resolving outstanding issues and remembering good times.
Family caregivers frequently work alone. The majority of family caregivers who are already providing intensive levels of care do not get consistent help from family and friends. Whether this is because they don’t ask for assistance or refuse it when it is offered is not known.
Hospice workers and others assisting with a dying patient’s last days must be sensitive to the fact that caregivers may not be used to outside help and may be reluctant to hand over the care that they have been providing. Determining how to share tasks with a family caregiver is easy to do when he or she can clearly and realistically articulate his or her needs. But when the caregiver is overly distraught and cannot see the reality of the care situation, then professionals must find ways to intervene without causing greater anxiety to the caregiver. This requires more art than science and is why professionals focused on end-of-life care need special training to understand not only the principles of palliative care, but the art of “caregiver care” as well.
For some caregivers and their loved ones, this may mean having someone else assume the responsibility for all active aspects of care so that they can regain physical and emotional strength. For others, learning from a trained assistant how to properly give a bed bath and benefiting from the sense of closeness involved may be more important.
Perhaps the best way to know what you can expect as a family caregiver is to talk to other caregivers who have already been through the dying experience and collect their stories in a meaningful guidebook that you can turn to in time of need. Or, contact the offices of the National Family Caregivers Association at 1-800-896-3650 or on the Web at www.nfcacares.org for more information.
Suzanne Mintz is the president and co-founder of The National Family Caregivers Association.
Educational Broadcasting Corporation/Public Affairs Television, Inc. Reprinted with permission.