Two and half years ago my then-boyfriend was diagnosed with ALS (Lou Gehrigs disease). We were determined to deal with this horrible disease . . . and keep him home. I had no idea how hard this job would be!
A Caregiver’s Bill of Rights
I have the right . . .
- To take care of myself. This is not an act of selfishness. It will give me the capacity of taking better care of my relative.
- To seek help from others even though my relative 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 for myself.
- To get angry, be depressed and express other difficult feelings occasionally.
- To reject any attempt by my relative (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 relative.
- To protect my individuality and my right to make a life for myself that will sustain me in the time when my relative 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 older persons in out country, similar strides will be made toward aiding and supporting caregivers.
- To ___________________________________________________ (Add you own statement of rights to this list. Read the list to yourself every day.)
— Jo Horne, author of CareGiving: Helping an Aging Loved One