The following is a list of rights caregivers must have to remain strong and take care of themselves. All too often, caregivers forget that they need support just as much as the people they care for. This includes me.
A 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 need 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 towards aiding and supporting caregivers.
Recently, I forgot about this list, which is why I'm now completely exhausted. I forgot to ask for help, take breaks, and give my body the food and rest she needs. It's not surprising; parents of children with disabilities tend to devote their entire lives to caring for their children, even at the expense of their own health and well being. After 13 years and hundreds of hours of caregiver training, I know better, and yet I do it all the time. I get busy and focused on Queen Teen and slowly forget to take care of myself, only remembering that my body requires a certain amount of calories every day when I get the shakes and feel dizzy. Oh yeah, food. When did I last eat, I mean, some kind of food other than just a protein shake and a bottle of water?
Maybe one of these days I'll realize I'm falling into the old mother-of-a-child-with-special-needs, sacrificial trap before I get caught. For now, I can only give myself a good stern lecture, forgive myself for becoming a martyr, and find something really good and healthy to eat. Then tomorrow I can try to balance my own needs with the needs of my daughter and hope I figure this out a little better one day.
Or not. Has anyone managed to keep this all in balance?