LECOM Health Visiting Nurse Association of Erie County

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.

carrieTaking 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/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
  • 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
  • Expect not to feel cheery every day and allow negative feelings to be expressed

It is important to be aware of guilty 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.

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.
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.
© by Jo Horne, Author of “CareGiving: Helping an Aging Loved One“

A Caregiver’s Guide

sam2How special and unique we are! Within each of us there lies a wealth of potential, the capability of bringing ourselves and others untold joys as well as the capacity for bearing tremendous sorrows. No other experience brings this reality more to mind than death. And though we know death to be a fact of life, how difficult it is for us to let go.

When someone we love receives a terminal diagnosis, we begin grieving. This period is referred to as “anticipatory grief,” or mourning and it affects the whole family. The family will never be the same again. Every aspect of the family’s life and functioning is undergoing change, a change imposed against its will.

It is natural for families and friends to grieve in anticipation of the loss, and any attempt to hide these concerns and feelings may be apparent to those with a life threatening illness. It is important to be honest at this time, to share feelings and grief. This sharing may enable those involved to face important issues as calmly and effectively as possible.

A final note—this period of time will cause significant amounts of stress to surface. Be aware of it, and find the best way to reduce it. By doing this we can avoid a “crisis,” which is stress that has become excessive. Our hope for you and your family is that you may find encouragement and support knowing this is a most difficult time but, hopefully, one of creating new and lasting memories.

What is anticipatory mourning?

It is the mourning that we and the dying do while death is anticipated.

Why is it important to know that death is imminent?

It offers us the opportunity to have the best possible experiences in our life while living with illness and death. “To the extent that healthy anticipatory mourning can be promoted in the ill person’s intimates, those intimates will be better able to relate to the ill person, and enable him/her to realize whatever would personally constitute a better life with the illness and a more appropriate death.” [Wiseman, 1972]

In addition, continuing enjoyment enables the dying and us to take steps to address unfinished business, and live out our final days as well as possible. In the time that we still have together we can look forward to the future in ways that will promote loving in absence. It’s a process of taking first steps in learning to balance the pain of missing those who die with holding and cherishing their legacies. Therefore, it is important to do all we can to come to terms with our feelings, resolve past conflicts, heal rifts, forgive omissions or offenses, and find ways to do or say what we feel we must while they are alive.

Seven Principles for Caregivers

  1. The healthiest way to care for another is to care for yourself. This is not selfishness, it’s replenishing yourself with rest, exercise and healthy eating.
  2. By focusing on your feelings you can focus beyond your feelings.This helps you to get a closer sense of what is around you.Feelings are neither right nor wrong, they just are.
  3. To be close with another you must establish boundaries. This helps us to maintain our separateness, to be ourselves! It acknowledges our need for help, and gives us permission to say no. It’s creating our own space.
  4. In accepting the helplessness of your feelings you become a better helper. No matter how much help there is to do, there is only so much you can do to help. In addition, however much care you can provide is not necessarily the amount of care you should provide. Accept and affirm that there are ways you cannot help.
  5. Caregiving is more than giving care, it’s also receiving care. How true it is that when you give, you gain. This is “care sharing” each receiving what each one needs.
  6. As a caregiver your strength is in your flexibility. “Authentic” caregiving is to be flexible. It is not about being perfect or doing things perfectly. It is about presence, loving and strength through gentleness.
  7. In the everydayness of your caregiving lies something more….sacredness. It is born in the ordinary, with familiar sounds, faces and touches.
*The Grit and Grace of Being a Caregiver-maintaining your balance as you care for others—[Dr. J. E. Miller, Willowgreen Prod.]

Recipe for Healthy Caregivers

  • Take time for yourself
  • Eat well
  • Exercise
  • Get adequate rest
  • Get a massage
  • Take hot baths/showers
  • Listen to soothing music
  • Find something you enjoy doing
  • Get close to nature
  • Keep in touch with friends
  • Exercise being positive
  • Learn to be understanding and tolerant
  • Focus on the present
  • Spend quality time with loved ones
  • Adopt a sense of humor, laugh more
  • Recognize the stress in your life and try to reduce it
  • Be an active listener….try to hear what is being said beyond another’s words
  • Cherish memories; create new ones

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