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Ernest H. Rosenbaum, MD
The Cancer Survivorship Program is an organized approach to aid family members and friends in getting advice and assistance in the care of cancer survivors.
Fortunately, the majority of survivors are able to achieve rehabilitation and return to a reasonably normal life. Some are not as fortunate and need assisted care in the hospital, at home, in a nursing home, or in a hospice. Caregiving requires knowledge and education, often financial assistance (beyond what is provided through various insurance policies or Medicare/Medicaid), and also advice and help in the rehabilitation process.
The role of caregivers can be a part- or full-time job. The goal is to give optimal care by promoting a rehabilitation program and at the same time provide the love, support and caring necessary to help maintain a patient's confidence that they are not only doing well, but also improving and able to get enjoyment out of life.
The caregiving process is not easy, although, in general, it depends on the type of cancer, comorbidities and illness-related debilities, its treatments, and the emotional trauma that occurs with an illness, which can be as severe as the posttraumatic-stress-syndrome seen in war veterans.
Caregiving includes providing nutritional and emotional support, and assisting with exercise. By knowing how to talk to the ill person, caregivers promote confidence, courage and hope that is vital to help patients cope with their illness and with the process of getting well.
This is often an overwhelming process. The Survivorship Care Program provides knowledge to educate patients and caregivers about how to plan daily activities, as well as future activities and goals. Using available resources, including books, the Internet, other media, and getting current medical information from the medical team can help the support endeavor.
Too much bed rest takes a toll on muscles and the respiratory system. A schedule of daily living activities for optimal physical rehabilitation can help prevent physical wasting and deconditioning A body-building type program helps maintain muscle strength, reduces wasting and fatigue, and leads to simply feeling better. These goals require time, effort, and perhaps financial commitments, especially if insurance does not cover funds for rehabilitation needs.
Compile a list of questions to ask your doctor or caregiver team. Also, because it is so easy to forget all that can transpire in a visit, take along a tape recorder, notebook, or a friend to document instructions and advice that you can refer to later.
Providing home care to a cancer survivor can be greatly facilitated by proper preparation and instruction; both the survivor and caregiver will have a better understanding of the problems they are likely to encounter and will be better prepared to cope. Family members and friends can be trained to help provide the necessary supportive care, including assisting with proper diet and exercise, changing dressings, or bed care. Home care programs have been evolving for over twenty-five years; in addition to hospital-related training and home care agencies, a wealth of information is available in books and other media.
Providing home care also can create stress and strain for the family, friends, and caregiver team. Get help by striking a balance of give-and-take on both sides, honest talk, and conferring with the medical team. There are many organizations that can help with guidance, financial aid, or taxi support, such as the American Cancer Society, the Leukemia and Lymphoma Society of America, the National Coalition for Cancer Survivors, and others. (See Appendix)
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