The Caregiver Bill of Rights is nothing new. In fact, it was adapted thirty years ago from a book called CareGiving: Helping an Aging Loved One by Jo Horne. This landmark work broke down caregiving into its most practical aspects, including tackling the all-important relationship between the care provider and recipient.[1. “Family Relations and Caregiving, 2003, https://www.ndsu.edu/ndsu/aging/caregiver/pdf/family/module.pdf] The information in Horne’s book is still relevant to caregivers today, particularly as it pertains to your rights as a caregiver within the caregiver/patient relationship.
A Bill of Rights to Help Navigate the Emotional Stresses of Caregiving
The original version of the Caregiver Bill of Rights may have been published in 1985, but this classic work holds relevance to caregivers and family members of older adults today. If you’re a caregiver navigating the stresses and emotional toll of caring for an aging family member, you should familiarize yourself with these basic tenants.[2.”A Caregiver’s Bill of Rights,” Caregiver.com, https://caregiver.com/articles/caregiver/caregiver_bill_of_rights.htm.]
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 relative.
We say: Don’t neglect your health because you think your loved one is more important. Your health is just as important as your loved one’s, and it’s vital to being able to continue to provide care to an aging adult.
I have the right: To seek help from others even though my relatives may object. I recognize the limits of my own endurance and strength.
We say: No man or woman is an island. You may not be able to do everything your loved one needs. Feel comfortable telling your relatives what you are and are not comfortable dealing with, and know that it doesn’t make you a bad person — it just makes you human.
I have the right: 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.
We say: Just because you’re a caregiver doesn’t mean you can’t have a life of your own. It’s not reasonable for anyone to expect you to spend every spare minute on someone else.
I have the right: To get angry, be depressed, and express other difficult feelings occasionally.
We say: Having negative feelings is a normal part of being a caregiver. It’s much better to express your emotions rather than bottle up feelings that can lead to serious consequences.
I have the right: To reject any attempts by my relative (either conscious or unconscious) to manipulate me through guilt and/or depression.
We say: Manipulating a caregiver, by any means, is simply wrong. It’s important to recognize when this is happening and take prompt, firm steps to stop it.
I have the right: To receive consideration, affection, forgiveness, and acceptance from my loved one for what I do, for as long as I offer these qualities in return.
We say: It’s easy to fall into a pattern of putting up with negative or even abusive behavior from your loved one. But to the extent that they’re capable, you need to hold your loved ones to the same level of expectation they hold for you.
I have the right: To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my relative.
We say: As a caregiver, you may not realize what an incredible job you’re doing or how strong you have to be to do it. Acknowledging this should be part of your reward for fulfilling this role.
I have the right: 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.
We say: It can be hard to imagine a time when your loved one will no longer need you. Even if you dream of relief from the burdens of caregiving, that time will be confusing and stressful if you’re not prepared for it. Take care of yourself and keep important aspects of yourself alive throughout the draining process of caregiving to make the eventual transition easier[2. “Caregiving: role engulfment and the loss of self,” October 1992, https://www.ncbi.nlm.nih.gov/pubmed/1427278].
I have the right: To expect and demand that as new strides are made to find resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.
We say: You can help make this happen by being active in your local community, and by contacting your representatives. Now take the steps to apply the Caregiver Bill of Rights to your own life!
If you’re unsure how to best help an aging loved one, the trained and compassionate staff at the Institute on Aging is here to help you make that decision and gain the best in at-home care for older adults. Contact us to find out more.
