**Companion Resources Newsletter**
edited by Paul D. Leichty
Volume 4, No. 4 April 2002
Hopefully, all of us are caregivers–caregivers in the sense that we give care to those around us. Yet, there are special circumstances in which family members and others need to provide the special care that is needed for persons with significant disabilities that make them unusually dependent upon others.
Parents, of course, are the quintessential caregivers. The newborn baby is totally dependent on parents for all of his or her care. The challenge comes when there are special circumstances in which a severe illness or disability makes the need for caregiving even more intense or for a longer period of time.
This is what happens when a child is born with physical and/or developmental disabilities. Whereas normally, parents can look forward to and celebrate the growing independence of their child, in this case, expectations need to be revised over the years and eventually, plans need to be made for special care when the parents are no longer living.
Another scenario that can be devastating is when parents assume that a child is developing normally but then through an accident, critical illness, or the onset of a chronic mental illness, that child becomes more dependent instead of more independent.
However, yet another situation is the reverse of the previous ones and increasingly more common. For most of us, it is probably more likely we will be caregivers to our aging parents than to our adult children. Much is being written recently about caring for a parent or other older adult due to the onset of disabilities related to the aging process. Much of the research is focused on Alzheimer’s Disease.
Whatever the situation, caregivers need care as well. That means that caregivers community in order to stay healthy themselves. While there are many informal ways in which caregivers receive care, there are basic two ways in which this is structured into our modern society.
The first way is through respite care. Respite is a temporary break for caregivers from the responsibilities of caregiving to rest, relax, and pursue recreational opportunities. Respite is particularly important for parents and others caring for a child (even an adult child) with special needs. Respite is also essential in situations where an adult child is caring for an aging parent.
Respite is often what allows for family members to take care of their loved ones at home. By planning respite time into the normal routine, the stress is reduced for the caregivers and the whole family system. Families are able to cope more effectively by having a regular break for relaxation, refreshment, and renewal of physical and mental energies. Respite has also been shown to prevent abuse, by providing outlets for accumulated stress and tensions. Respite allows family members to express their love to the one cared for and reduces the need for more costly options of institutionalization.
Respite can happen in informal ways as the informal community support system of the family spontaneously offers their own care and support. However, many times, there is a need for specialized care that not many people in the informal community feel comfortable and able to give. That’s where community respite services can be helpful. Often the cost of these services can be covered by government or local community funds.
However, there comes a time when, for a variety of reasons, family members need to hand over primary caregiving responsibilities. In this case, community agencies are usually available, with the help of federal and state funding, to provide caregiving. The best situation is when that can happen in a home, where the person being cared for feels at home. Increasingly, in North America, we have moved persons with disabilities from large institutions to smaller home-like settings. In some places, there are settings where persons with long-term mental illness can also live in such settings. Unfortunately, when persons get older or have disabilities which require extensive medical attention, the larger institutional settings still prevail.
However, in any setting, the presence of a supportive community can make a huge difference. Whereas paid caregivers often need to scramble simply to provide the basics of personal care such as meals, clothing, bathing, etc., the caring companion from the wider community can provide the extras which help to meet the emotional and spiritual needs and brighten the day of someone with special needs. It may be as simple as taking a walk, reading a book, engaging in conversation, or even just being with the person. A companion can go beyond just the basics and build the connections that build community–even in the most dismal of institutional settings.
There are a fair number of resources on the Internet that deal with caregivers and especially respite. I’ve begun to add some of these in the “Living” section of the Companion Resources website at [unfortunately, not yet republished as of 14 January 2007]. Feel free to check it out. Let me know if you discover other resources that would be helpful.
“Caregiver” can easily become the next institutional word, like “warden” or “matron” or “trustee” or “houseparent” have been in the past. Hopefully, however, wherever there are special needs, true companions will emerge for both the person with the special needs and for the long-term caregivers. The presence and activity of these companions will largely determine the quality of life and the level of true community for these families.
I wish for all of you that peace and wholeness that comes in community!
Paul D. Leichty
The Goldenrod Community
Phone/Fax: 1-877-214-9838 (toll free)
“People using Technology building Community”