A Guide for Family Caregivers of Loved Ones with Rare Diseases
Because Family Caregivers Are There Through It All
By John Schall, CEO, Caregiver Action Network
We often say that family caregivers should not only be acknowledged as a part of the health care team for their loved one with a disability or a chronic condition – but indeed should often be recognized as the most important part of the health care team.
Why is that? Simply because family caregivers are the only people who are consistently present with their loved ones across all care settings.
Just think about it: everyone else can and does change. Patients often have more than one doctor. Nurses change shifts in hospitals. Prescriptions may be filled at different pharmacies. But it is the family caregivers who are there as full partners with their loved ones through it all.
Family caregivers are spending an average of 20 hours per week providing care to their loved ones – far more hours than any medical professional spends with them. And many, in fact, are caring for their loved ones around the clock. That puts family caregivers in the best position to observe their loved ones, monitor their health, watch for side effects of medications, and respond to medical emergencies.
So, yes, family caregivers are often the most important member of the health care team because:
Family caregivers and their loved ones are the only people present across all care settings
Family caregivers have an intimate knowledge of the patient
Family caregivers have the desire to make sure their loved one is as healthy and has as high a quality of life as possible
Family caregivers see the patient in their own homes and for longer period of time than anyone in the provider community