Caregivers Have Rights, Too
Every caregiver knows this: Sometimes you have to be the bad guy. Depending on the day, you’re the one who makes the patient get out of bed, swallow medications, get cleaned up, and eat properly. You become the bully. And it’s not a pleasant feeling.
We may be a caregiver out of love, because we truly want our loved one to be comfortable. It would be wonderful to be appreciated, but too often, the patient’s condition has progressed beyond being able to express gratitude. Instead, it can feel as if he or she resents our efforts.
Jane Marks, Retired Executive Director of the Alzheimer’s Association of West Virginia, recently wrote of her challenges while caring for her own mother: “I do my best to make her comfortable. I manage her money; find qualified caregivers to assist her. I visit almost daily. I seek out the best doctors and each week I make a special bowel concoction. Yet, I still feel guilty. And I feel hurt. I can't completely block the emotional pain when she gives me 'the look' or says hateful things.”
If an expert on Alzheimer’s and dementia feels guilty and frustrated, so can all caregivers. Ms. Marks recommends that all caregivers read and keep a copy of “A Caregiver’s Bill of Rights” nearby. It’s not legally binding, of course, but it does provide a sense of relief and support.
A Caregiver's Bill of Right (By Jo Horne, 1985)
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.
