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Former First Lady Rosalynn Carter has been interested in caregiving issues for many years and has spoken eloquently about the stressful situations and needs of families struggling to provide care to relatives. Mrs. Carter is the honorary chairperson of the Rosalynn Carter Institute for Human Development whose mission is to understand the caregiving process and to discover new ways to assist formal and informal caregivers. She resides in Atlanta and Plains, Georgia with her husband, Jimmy Carter, the thirty-ninth president of the United States.
How did you get involved in issues of caregiving?
When I was 12 years old, my father became terminally ill with leukemia. He died a few months later, leaving my 34-year-old mother with few resources and four young children. Eleven months later, my mother's mother died, and my grandfather moved in with us. Mother cared for him for 25 years.
Although it seems as though I have been closely associated with caregiving most of my life, I first embraced the issue during Jimmy's campaign for governor in 1970. I remember standing at the gate of a cotton mill early one morning handing out brochures. A woman emerged from the all-night shift, her hair and sweater covered with lint. She said she had a daughter who was mentally ill, and her husband's salary didn't cover the extra expenses that her child's condition generated. She worked at night to make ends meet and cared for her daughter during the day.
She reminded me of my mother, who never had time of her own. It was then I decided that, if Jimmy were elected, I would address issues in mental health care, and caregiving issues are central to these.
What is the magnitude of the caregiving problem?
The number of unpaid caregivers in the United States is estimated to be 25 million and growing. People today are living longer. Children in their 70s are caring for parents in their 90s. With more people needing care, there are fewer people available to give it. More women are working than ever before. Families are not as closely knit or as large as they once were. Yet family members continue to care for the vast majority of dependent people at home. Only 10 or 20 percent of those requiring care receive it in institutions.
What problems do caregivers face?
Caring for a housebound or bedridden loved one can be stressful, frustrating, and lonely. It can tax one financially, physically, and emotionally. Caregivers don't know where to go for help, or that help is available, often in their own community. And many don't appreciate their role. According to a national survey published in 1987 by the Select Committee on Aging, when compared with the general population, caregivers were three times more likely to be depressed, two to three times more likely to take psychotropic drugs (such as tranquilizers), and 12 percent more likely to use alcohol as a way to cope with stress.
What do you see in the future as providing hope and help to caregivers?
Educational, religious, and other community institutions can establish resource centers and provide consultants or volunteers to help family caregivers care for their disabled loved ones. They can help establish support groups and more generally seek to increase awareness of informal caregivers and the value of their role in our society.
States also can play a vital role in preventing the downward spiral in which many caregivers find themselves. For example, one of the first state programs was California's system of Caregiver Resource Centers for families caring for loved ones at home. The program assesses caregiver needs; counsels on ways to cope; trains family caregivers; provides information about other local, state and federal support resources; and offers information and assistance with respite care to families caring for those with Alzheimer's, stroke and other cognitive disorders. Pennsylvania designed a similar program, The Family Caregiver Support Program, to help those who want to care for older relatives in their homes.
My hope is that Congress will pass legislation providing for more home care programs.
Where can caregivers turn for help?
Find out what is available in the community. Ask at the hospital (hospitals often have Astroke clubs@ or Aheart families@ or know about support groups. Talk to the doctors, nurses, your pastor or rabbi. Go to the library or local bookstore and look for information on your loved one's illness.
Look in the telephone book for your state or local aging office, organizations such as Eldercare, or a private clinical social worker, who can come to the home regularly or just one time to assess the needs. These social workers can help with anything from advice on available government programs to helping locate a mechanized bed. If your loved one is terminally ill, check to see if a hospice is listed. Hospice provides compassionate service and support to the ill individual and to caregivers.
Or call a national organization. These organizations, many of them geared to specific physical or mental illnesses, can give you information about what is available in your own community. You can call 1-800-555-1212 for the number of a national association that deals with your loved one's disease or condition. In addition, you can find in my book Helping Yourself Help Others: A Book for Caregivers, a comprehensive list of information clearinghouses, including: The American Self-Help Clearinghouse, (973) 989-1122; National Mental Health Consumer's Self-Help Clearinghouse, 1-800-553-4539 or 215-751-1810; National Federation of Interfaith Volunteer Caregivers, Inc., 1-800-350-7438 or 914-331-1358; and Family Caregiver Alliance, 415-434-3388.
Do you have a personal message for families?
It's important for families to plan ahead, so they don't have to deal with difficult issues in the middle of a crisis. Hold a family meeting to discuss how to handle tough issues and divide responsibilities among family members. Write down your decisions, and give a copy to everyone involved. Also record vital information about the patient--financial records, Social Security number, insurance policies, etc. If the patient does not already have a will, encourage him or her to have one made.
On a more inspirational note, take time out for yourself. Every one of us needs a life that is at least partly our own. Caregivers should carve out some time for themselves every day to do things they like to do to help lessen the strain.
Take care of yourself. You're very important!
Interview Date: July 1997
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