Support and Recognition for Caregivers’ Contributions

Caregiver’s “Bill of Rights” stresses self-care and dignity

The concept of a Caregiver Bill of Rights is not new. Its origins are sometimes disputed, but many agree that it arose more than 30 years ago after the publication of a book called CareGiving: Helping an Aging Loved One by Jo Horne (AARP Books, 2015). A landmark work that is still relevant to caregivers today, the book addresses all aspects of day-to-day caregiving, and emphasizes the vital relationship between the care provider and recipient.

Caregivers handling the stresses, challenges, and emotional toll of caring for an aging family member—especially caregivers who often feel undervalued, abandoned, overburdened, and overwhelmed—should familiarize themselves with these basic tenets that champion all caregivers’ rights to practice self-care, preserve their own individuality, seek help from others, take pride in their contributions, and to expect acknowledgement and respect for what they do.

Caregiver’s Bill of Rights by Jo Horne 

I have the right:

  • To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.
  • To seek help from others even though my loved ones may object. I recognize the limits of my own endurance and strength.
  • To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.
  • To get angry, be depressed, and express other difficult feelings occasionally.
  • To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.
  • To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.
  • To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.
  • To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer needs my full-time help.
  • To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made toward aiding and supporting caregivers.