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Caregiver Disorder and Being Heard

Family caregivers are ill-served by our current health care system. This isn't intentional, but rather a byproduct of neglect. We are not the subject of ongoing research. There is not a known condition called, "Caregiver Disorder." We are for all intents and purposes invisible to the formal health care system.

The following article has been adapted from an article by Suzanne Geffin Mintz, the President and Cofounder of the National Family Caregivers Association (NFCA). NFCA is an organization dedicated to improving the lives of America's family caregivers. For information about them or becoming a member of this association, and receiving their newsletter, call 1-800-896-3650. They can also be found on the web at

Susan writes: "We are seen as the sad-faced people who come to visit our loved one in the hospital. We are the ones who drive them to physical therapy, or administer medicine at home. We are family. No thought is given to the fact that in some circumstances we might actually be another patient. That needs to change."

Society and our health care providers need to recognize that illness and disability is a family affair. When someone we love receives the diagnosis of a debilitating illness, family caregivers provide intensive levels of care. They can develop a condition that is equally in need of diagnosis and treatment.

We need to let people know that we invisible caregivers provide $196 billion of free service every year. This isn't going to happen however, until we speak out, until we tell our stories. We need to do this because family caregiving is not well understood by the formal health care system or the general public. Our experiences are outside the norm, and if caregiving is about any one thing, it is the loss of normalcy. We caregivers and our care recipients spend an inordinate amount of time figuring out how to do basic activities that the "healthy" and able-bodied world take for granted.

Medical professionals are focused on fixing structural abnormalities of the body. We are focused on trying to create some quality of life for ourselves and our families. Caregiver terms include functional support, and rehabilitation, not "cure." Caregiving is custodial care, not medical in nature so it remains largely unseen. What is not seen is not valued. If what we do isn't valued by society, it follows why should we be? This thought needs to change.

Susan Mintz writes, "I am tired of being invisible. I am tired of not being recognized as an important player in our health care system. I have suffered twice from clinical depression and I don't want to be that ill again. I don't want to put my own life, and therefore the life of my husband for whom I care, at risk again. I want my personal physician to write "caregiver" on my chart, and I want my husband's physician to verbally examine me, review my progress, and watch out for symptoms in me that might spell trouble."

"I want all of these things to happen because I believe it is vitally important that our health care system recognizes the existence of family caregivers and gives us the respect, honor, and very real attention we deserve. If it does that, ultimately it will be providing better care, not only to us, but to our care recipients as well."

The Nebraska Network for Children and Families (NNCF) through it's web site, Answers4Families, recognizes the importance and the outstanding efforts of caregivers like you. Answers4Families is designed for caregivers to meet one another and share experiences, suggestions, and support. In addition to the web site containing useful information, you can gain additional support from others like yourself through a listserv. A listserv is a support group that does not require you to leave home, arrange for respite care, or travel.

At the Answers4Families web site, ( ) , you will find access to the Nebraska Resource Referral System (NRRS) a directory of more than 8,000 Nebraska resources in 22 categories ranging from respite services, adult day care, transportation, health, support groups, and financial assistance. In addition, the web site provides the "AskRx" and "Ask An Expert" services as well as links to state and national organizations.

You don't have a computer? Don't despair! There is a less expensive way. "WebTV" boxes attach to your television and bring the world of Internet into your home for approximately $150. WebTV, purchased at an appliance and electronics store, can also be used to e-mail and 'chat' with friends and relatives at a fraction of the cost of long distance phone calls.

Talk to your doctor and your care recipient's doctor about this issue. Know that there are resources for assistance with care and know that it is not selfish to take care of yourself or seek assistance.

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