Create a community of caregivers to help share the responsibilities.
No matter your caregiving situation, know your limitations, say experts, and give yourself permission to say “no” if the task becomes too great. “There is only so much one person can do, and everyone needs to recognize that and look at what his or her own limits are both in terms of emotional makeup and personal situation,” says Suzanne Mintz, president and CEO of the National Family Caregivers Association (www.nfcacares.org; 800-896-3650)
Mintz suggests creating a community of caregivers to share the responsibilities. Lotsa Helping Hands (www.lotsahelpinghands.com) is a good place to start. The web-based resource allows caregivers to develop a network of family, friends, neighbors, and colleagues to coordinate meals and schedule rides to medical appointments. Team Convene, a program offered by Gilda’s Club (www.gildasclub.org; 888-445-3248), offers similar assistance.
For caregivers who need help managing the financial burden, Family Caregiving 101 provides a listing of financial resources at www.familycaregiving101.org/help/financial.cfm, and the Patient Advocate Foundation offers a state-by-state directory of programs and services that assist patients with housing, utilities, food, and transportation to medical treatment at www.patientadvocate.org/report.php and by calling 800-532-5274.
Some states offer a Cash & Counseling program to Medicaid recipients who work with counselors to determine how their personal budget is spent. Patients can decide where to spend the funds, such as paying a friend or family member for caregiving. In addition, for caregivers who are covering the cost of treatment and co-pays, a number of organizations, nonprofits, and drug companies offer drug and patient assistance programs (find a comprehensive listing at www.curetoday.com/assistance_programs).