By Elisabeth Lopukhin
Caregiver: Someone who provides any type of assistance that enables a frail elderly or handicapped person to live at home in spite of their condition.
Respite: A break from caregiving and chores, a “time out” from constant responsibility; a time to renew one’s strength.
Medical technology has progressed, noticeably increasing a person’s life span. The care of the frail elderly is now a common occurrence. Studies show that 80 percent of all the care is provided by relatives at home. Such assistance is provided on a daily basis averaging as much as four hours a day. Studies also show that 10 percent of the caregivers assume responsibility 24 hours a day. Where available, day care programs for the elderly help greatly; however evening, night and weekend responsibility remains a constant. For those who found institutionalization to be inevitable, visiting becomes a steady responsibility. The frame of mind in which the caregiver performs his or her duty is of utmost importance.
As a rule the care is given lovingly, willingly, affectionately and with pride. But studies have shown that caregivers endure high levels of stress both emotional and physical. The hardships are often financial as well. Spouses and children experience not only isolation, loneliness, and a loss of personal time, but painful emotions such as guilt, confusion, anger, sadness and grief. With these unavoidable strains, their own health often suffers, not to speak of experienced “burnout.” To stoically ignore one’s own needs ultimately leads to diminished quality of care. The result is even more emotional pain and guilt for all involved.
So far there has been very little government assistance in this area. The Meals on Wheels program is well established, but provides only some relief. Day care centers for Alzheimer patients are available only in some areas. Home care services are often very expensive or unsatisfactory. Temporary placement in a nursing home is very difficult to arrange in most cases. Sporadic help can be found through local or state department agencies on aging that provide listings of community resources. The neediest cases are usually elderly couples living on their own because their children are far away and unable to help physically. In these cases one elderly spouse provides for the needs of the more impaired one.
THE PARISH AS A PROVIDER OF “RESPITE”
In most parishes there are persons familiar with the local available resources and who can often give a “helping hand” themselves. Any parish as a group can become a provider of “respite.” This project can be planned with various levels of involvement. The program need not be formal or even ambitious. It can be coordinated by the priest or by any member of the parish. The endeavor can range from a volunteer agreeing to provide needed care for a few hours a week to a “fee for service” enterprise serving the community at large. If there is a nurse or social worker in the parish, their involvement will be a special asset in planning and implementing the project.
The first step is to identify the families or individuals who are “caregivers.” It is important to remember that the needs of a frail elderly couple living alone may not be very visible as the caregiving spouse may be hiding the need or be embarrassed by it.
The second step is to assess the needs of the cases that have been identified. They may be quite varied. Assistance can be given with cleaning, cooking, or driving to doctors and to church. Simply doing the shopping may be sufficient welcome respite. Sometimes just to come and socialize with the frail person allows the caregiver some breathing space to relax and to renew spiritual strength. For more medically dependent cases the respite for the caregiver may include providing grooming, toileting, dressing, bathing, washing, feeding. The act of lifting and turning in such instances is usually the most exhausting part of the care.
The third step is to create within the parish a pool of available volunteers or workers, and then to coordinate the project. This aspect can range from an informal involvement of a few volunteers to a large-scale placement bureau, matching the skills to the needs.
One should remain aware at all stages that caregivers may be reluctant and even resistant to admitting their needswhether because of embarrassment, pride, guilt or inappropriate desire to remain totally independent. Tact is required in those cases to show that even a brief period of relief (a few hours of reading aloud, or running errands several times a week, or providing a weekend of “relative” or “friend-sitting”) reduces the exhaustion and the frustration of the caregiver. Such brief help renews the caregiver’s physical and mental well-being and restores and refreshes the ability to cope and to continue providing the care of the loved one. It is also essential to establish the trust of the caregiver and to involve that person in planning what assistance would be most beneficial.
If you are interested in setting up a respite program, the following literature may also be of use:
1. RESPITE RESOURCE GUIDE: How to set up respite services, such as adult day care, home companions, short-term institutional care, and pros and cons of each. Order from NCOA Publications, Department 5087, Washington, DC 20061-5087. Item # 2040. http://www.ncoa.org/publications/publications.htm
2. CAREGIVER SUPPORT GROUPS IN AMERICA. Directory plus annotated bibliography of manuals on starting support groups and report on current status of caregiver groups. NCOA Publications, Department 5087, Washington, DC 20061-5087. Item # 2041. http://www.hafs.org/parentsFam/caregivers.htm
3. RESPITE: HELPING CAREGIVERS KEEP ELDERLY RELATIVES AT HOME. How to approach planning, staffing and implementing a volunteer respite care program. National Council of Catholic Women. http://www.nccw.org/
4. INSTRUCTIONAL MANUAL FOR PARENT CARING PROGRAM. A step-by-step guide to conducting seven institutional and discussion sessions for families and professional caregivers. Order from ASSIST, 8905 Fairview Road, Suite 300, Silver Spring, MD 20910. http://www.co.mo.md.us/hhs/ads/DisabilityNetworkDirectory/developmental%20disabilities.html
5. CHECKLIST OF CONCERNS AND RESOURCES FOR CAREGIVERS. AARP workbook No. D-12895 from AARP Fulfillment, 1909 K Street NW, Washington, DC 20049 (free) http://www.aarp.com