Caring for the caregiver
As a caregiver, your child with cystinosis is your focus. But taking care of others may affect your own health. Your self-care may fall to the side. Do you get enough sleep, eat well, exercise, take breaks, and visit your own doctor? All of these may help keep you healthy so you can help care for someone with cystinosis.
Here are some things you can try to help relieve stress and stay healthy:
- Go to your doctor for a checkup
- Take a half-hour break as often as possible, and do something you enjoy
- Walk three times a week; start with a 10-minute walk
- Seek and accept support from others who can help with caregiving tasks
- Find someone to talk to such as a friend or a professional counselor
Take advantage of these support resources:
Caregiver Action Network (CAN)
CAN is a nonprofit organization providing education, peer support, and resources to family caregivers across the country, free of charge.
Family Caregiver Alliance (FCA)
FCA supports the important work of families caring for adult loved ones with chronic, disabling health conditions.
National Alliance for Caregiving (NAC)
NAC is a nonprofit group of national organizations. It focuses on advancing family caregiving through research, innovation, and advocacy. NAC conducts research, does policy analysis, and works to increase public awareness of family caregiving issues.
Rosalynn Carter Institute for Caregiving (RCI)
RCI's goal is to support caregivers—both family and professional—through advocacy, education, research, and service.
Rare Caregiver Respite Program from the National Organization for Rare Disorders (NORD)
NORD, a nonprofit organization representing people living with rare diseases, has launched a program to provide caregivers of rare-disease patients relief. Financial assistance allows caregivers time away while ensuring their loved ones are well cared for.
Get information about living with cystinosis by email.