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CareGiver's Bill of Rights

CareGiver's Bill of Rights

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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.
  • To seek help from others even though my relatives 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 relative (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 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 persons in our country, similar strides will be made towards aiding and supporting CareGivers.
  • by Jo Horne, Author of CareGiving: Helping an Aging Loved One

    The Caregiver's Bill of Rights

    Adapted from the book, CareGiving: Helping an Aging Loved One, published in 1985 by the American Association of Retired Persons.

    Taking care of a sick loved one can be a difficult job. To be successful at it, the CareGiver must keep a positive attitude and try to deal with any negative feelings he or she has in order to give nurturing care. In order to accomplish this, the CareGiver must realize his or her own limitations in order to maintain a healthy attitude and not feel guilty if he or she is not able to do everything.

    Sometimes, CareGivers find it difficult to maintain their emotional health while caring for a sick loved one. The American Association of Retired Persons developed a Bill of Rights to help maintain the emotional well-being of the CareGiver. By allowing himself or herself the rights stated in the bill, a CareGiver will not only feel better, but the health and safety of your loved one may be better served.

    The Caregiver's Bill of Rights is made up of nine separate rights. However, you should feel free to add your own personal CareGiver rights at the end.

    The Caregiver's Bill of Rights deals with the following issues concerning the CareGiver:

  • being able to take care of him- or herself without feeling guilty,
  • including having the right to continue a personal and separate life apart from CareGiving;
  • having the right to show normal human emotions, like anger or depression, and not to allow the loved one to manipulate him or her;
  • having the right to accept positive feelings from the loved one in appreciation for CareGiving, if those positive feelings are offered in return;
  • having the right to feel good about accomplishments as a CareGiver;
  • having the right to get help from others to care for the loved one; and expecting that the future will bring with it more resources and support for physically and mentally impaired older people and their CareGivers.
  • Despite knowing what rights you have as a CareGiver, guilt is still a feeling that is commonly experienced by CareGivers.

    Caregivers often feel guilty when:

  • taking time and attention for themselves, or
  • acting against the wishes of the ill loved one.
  • Sometimes, caretakers even blame themselves for the loved one's illness.

    A CareGiver may feel increasingly guilty as a loved one becomes sicker, or as the period of care lengthens. But there are some things he or she can do to try to reduce the feelings of guilt. Caregivers should:

  • realize that no one can be all things to all people,
  • avoid frustration by not expecting too much of themselves,
  • maintain a realistic schedule of the most important CareGiver tasks and not feel guilty about chores that don't get done,
  • give themselves permission to make mistakes and reward themselves for taking on the task of being a CareGiver,
  • pay attention to their accomplishments and take pride in the rewards of caring for a loved one.
  • ask for help when it is needed,
  • identify their own values and not be overly influenced by the opinions of others, and
  • expect not to feel cheery every day and allow negative feelings to be expressed.
  • It is important to be aware of guilt feelings as much as possible. Otherwise, they may build up inside, causing the CareGiver to feel resentful, angry and frustrated. These feelings can interfere with the CareGiver's ability to provide nurturing care, and may result in misplaced hostility toward the loved one he or she is trying to help.

    The complete text of the CareGiver's bill of rights can be found in the book, "CareGiving: Helping An Aging Loved One" published in 1985 by the American Association of Retired Persons.

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