Stroke Recovery Association of BC

Recovering from a Stroke

Caregivers’ Bill of Rights

This powerful message first appeared in Jo Horne’s book “Caregiving: Helping an Aging Loved One” (AARP Books, 1985), but has been adapted by many organizations and people over the years. Wendy Lustbader – a social worker, mental health counselor, author, and caregiver advocate in Seattle – is often cited as its originator. Whoever came up with it, these points can be a source of reassurance for caregivers.

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 one 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 provide care for, just as I would if he or she were healthy. I know that I do everything 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 attempt by my loved one [either conscious or unconscious] to manipulate me through guilt, anger or depression.
  • To receive consideration, affection, forgiveness and acceptance for what I do for my loved one 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 persons living with illness, physical or mental challenges in our country, similar strides will be made toward aiding and supporting caregivers.