The Caregiver's Bill of Rights
A recent question on this site was from Donna, who is the primary caregiver to her long-term boyfriend, who has been diagnosed with liver cancer. Donna, like many caregivers, is feeling overwhelmed. According to the National Family Caregivers Association, there are more than 65 million people in the United States caring for a sick family member or friend in any given year.
Research has shown that caregivers suffer from depression and anxiety at higher rates than the general public. More than half of caregivers admit they put aside their own needs, not eating properly, not getting enough sleep, not going to the doctor when needed, in order to care for their loved one. Many feel guilty taking even a short break, thinking, "I shouldn't be taking a break, after all, he (or she) is the one that is sick, I am not sick." But the added stress of caring for a sick relative can take a serious toll on the caregiver's health and life. One study showed that the stress can take as much as 10 years off the caregiver's life.
As our population ages, more and more people will be caring for a relative and we must pitch in, spending time not only caring for our sick friends and relatives but caring for the caregivers themselves. We must allow them to take a break, cope with their own overwhelming emotions and nurture their own health. The following has been adapted from the book Caregiving: Helping an Aging Loved One [1985, American Association of Retired Persons]
The Caregiver's Bill of Rights
- I have the right to take care of myself. I can only take care of my loved one if I take care of myself as well. I am not being selfish but my health and well-being is important.
- I have the right to accept my limitations and know that I cannot be "everything to everyone." Seeking out help does not mean that I care less, it means that I can not do everything by myself.
- I have the right to maintain my own life. Because I am caring for someone I do not need to give up all facets of my own life, I can care for someone and still get together with friends, go for a day at the spa or continue to pursue my own interests and hobbies. I have a right to be an individual as well as a caregiver.
- I have the right to my emotions. Sometimes I may feel angry, upset, depressed and anxious. I have the right to feel all of this. Remember, I am facing a major loss in my life as well.
- I have the right to not give in to manipulation or guilt piled on by family members or friends who believe I should be doing more or doing things differently.
- I have the right to ask for and receive forgiveness, acceptance and gratitude from my loved one and a responsibility to offer these as an individual and a caregiver.
- I have the right to feel pride in my accomplishments in taking care of my loved one and applaud the courage that it sometimes takes to care for him or her.
- I have the right to have my own health, both physical and emotional, needs seen as important. I have the right to spend time with other people who need my attention without feeling guilty for spending time away from the person I am caring for.
Caring for a sick friend or relative is difficult and emotionally exhausting. For all our members who are currently caring for someone, take a few minutes today to take care of yourself as well.
Caregiving: Helping an Aging Loved One, 1985, American Association of Retired Persons
"Caregiving Statistics," 2010, Staff Writer, National Family Caregivers Association
"Proceedings of the National Academy of Sciences," 2004, Dec 7, Elissa S. Epel et al, University of California, SF