What’s the Caregiver Bill of Rights?

Updated

Certified Care Manager, Aging Life Care Professional, and National Master Guardian Emeritus

The combination of an aging population both increasing in size and living longer has required more dedication and sacrifices from families—especially family members who have taken on caregiver duties. Even so, you may be thinking, “Why do caregivers need a bill of rights?”

A bill of rights is a statement of protection for caregivers who are giving up growing portions of their lives to take care of a family member.

Jump ahead to these sections:

For some, caregiving is a responsibility and expectation born of an ethical commitment to care for those who can’t care for themselves. Caregiving is a duty. As a result, many caregivers are left with a feeling that as they advocate for their loved ones, there is no one to advocate for them.

The Caregiver Bill of Rights is a series of statements that support caregivers by giving them a foundation of support and belief in themselves. Hopefully, you will gain a new perspective and strength as you go about your day as a caregiver or as the loved one of a caregiver.

What’s the Caregiver Bill of Rights, and Where Does it Come From?

In 1985, someone decided to write up a concept that afforded caregivers the respect and dignity they deserve. With more aging adults retiring and living longer, family caregiving has exploded.

Resources from both government and private businesses have not risen fast enough to meet the demand, leaving families with little recourse other than to care for their loved ones on their own. In fact, the costs of care from professional caregivers to assisted living have only gotten higher.

Both family caregivers and professional ones can look to the caregiver bill of rights as guidance, even if agencies have differing policies. No one should be expected to give up their own lives, health, and well-being to take care of someone else. All caregivers should be treated with respect, as achieving a balance between duty and personal well-being is challenging but necessary.

Origin and author

The Caregiver Bill of Rights is attributed to author Jo Horne, who wrote about it in her book, Caregiving: Helping an Aging Loved One, published in 1985. Jo has written several other books on caregiving, nursing homes, and home-sharing. Her Caregiver Bill of Rights has been replicated and written about scores of times since the original publication. 

Purpose

Caregiving can be a thankless job, especially for a family member juggling the complex tasks required to care for a loved one. Much of this is due to a patchy healthcare system in addition to restrictive insurance requirements that leave families filling in the gaps in medical care.

The purpose of the Caregiver Bill of Rights is to remind caregivers that they too have rights and responsibilities to themselves. Caregiver burnout is real, and the consequences of giving up your life to care for an aging parent can be damaging physically and emotionally.

Reminding yourself that you have rights can keep you centered and healthy. If you suffer, you won’t be the caregiver you need to be. Taking care of yourself is taking care of your loved one, as hard as that might be some days.

ยป MORE: You're not alone. Get support from others who have experienced a similar loss. Start here.

 

What’s in the Caregiver Bill of Rights?

Just like the U.S. Bill of Rights, the Caregiver Bill of Rights is a series of assertions. Included are statements regarding self-care, recognition of challenging emotions, and refusal to accept other family members’ manipulation.

At the end of the Caregiver Bill of Rights is a blank space for you to write your personal statement. Author Jo Horne recommends reading all of the rights aloud to yourself every day.

What Does the Caregiver Bill of Rights Mean for Caregivers?

The sacrifice of caregivers is admirable but can be fraught with stress, conflict, and self-defeating choices. One of the issues recently discussed is how many women caregivers are giving up their jobs and careers as they care for a family member. The expectation that a family takes care of their loved ones is accepted and expected, but the financial consequences can be significant. 

The Caregiver Bill of Rights provides a foundation of self-regard and fortifies you against judgment and expectations. You are a person with your own life, desires, needs, and wishes. Self-doubt, shame, and guilt can lead you to make decisions that aren’t healthy or helpful.

Everyone has a different response to speaking up for themselves, so be patient with yourself as you start the process of self-empowerment. 

Respect

As you work tirelessly on behalf of another person, you deserve and need respect for your efforts. You may not always get that respect from the person you are providing care to, but you can and should expect it from other family members.

Respecting yourself is the act of having positive feelings and confidence in your decisions.  It is not unreasonable to have a family meeting to discuss this issue and remind everyone that you, too, need to be treated with respect.

Self-care

You have the right and the responsibility to care for your physical, emotional, and spiritual needs. Taking time for self-care is a necessity that might mean taking time away from your caregiving duties. Much like taking care of others, caring for yourself requires effort, focus, time, and a belief that doing so does not make you less of a caregiver. 

Acceptance of limitations

Everyone has limitations of strength, skills, time, endurance, and energy. Pushing through these limits can be damaging. When you accept that there are limitations to what you can do, this can open you up to ask for help and resources to support you as a caregiver. Asking for this support should be respected by the person you are caring for and other family members.

Expressing strong emotions is normal 

Frustrations and anger are a normal part of the caregiving experience. These emotions should and need to be expressed in ways that don’t harm other people. Depression and anxiety, although a part of caregiving, should be taken seriously and treated by a professional if they become persistent. 

A right to pursue activities and interests outside of caregiving

The work of caregiving can seem all-encompassing and consuming. Giving up activities and interests in pursuit of caregiver duties is not unusual, but doing so can leave you feeling empty and alone. This is especially true of friendships and other relationships that might suffer if you don’t cultivate new relationships and nurture old ones. 

Pursuing your passions is an integral part of who you are and feeds the soul. Your interests might be as simple as an exercise class, arts and crafts, or gardening. You may not have as much time as you did prior to caregiving to pursue these interests, but it is vital to stay connected to activities that bring you joy.

Taking pride in your work

As thankless as caregiving can seem sometimes, it takes great courage, resolve, and commitment to take care of someone close to you. And frankly, sometimes caregiving involves taking care of someone you may not be close to or particularly like. The selfless act of caregiving is brave. Although you may not get the accolades you deserve, take pride in your work.

The ability to confront and reject family guilt

As the primary caregiver, you may encounter attempts by your family to manipulate your behavior through anger, pressure, and guilt. Examples of this might include pressure to take on more caregiver responsibilities than are realistic or healthy.

You have the right and the responsibility to yourself to withstand unreasonable requests. Staying confident in yourself and your resolve can help you stand up for yourself. If you can, try and understand where their criticisms and manipulations come from.

A caregiver’s responsibility to other caregivers

Public policy shapes and influences caregivers in profound ways. The limitations of resources for caregivers can be frustrating and financially devastating. To the extent possible, caregivers can advocate for more support and resources for family caregivers.

You will have a life after caregiving

To have a meaningful life after caregiving, you have to plan for and expect it to happen. As your duties and time devoted to caregiving continue to grow, it can be challenging to think about a future without caregiving.

To envision a future, you will need to incorporate those thoughts and plans into your life. For example, keeping apprised and connected with employment opportunities or staying in touch with loved ones important to you can help fulfill those goals.

Your life should have meaning and purpose after your caregiving days have ended. The “job” is over, but your life shouldn’t be. In this day and age, the world moves quickly and it is easy to get left behind. Don’t let that happen. You deserve to live your life to the fullest.

Bringing the Caregiver Bill of Rights Into Your Life

Now that you have read and understood the Caregiver Bill of Rights, you can start the journey of self-empowerment. It might not be easy at first, but you will become a better caregiver as you become stronger.

You may not be able to tackle all of the bill of rights at once. Choose one or two to start and continue to build your personal foundation.


Sources:
  1. “Caregiver Bill of Rights.” The Family Caregiver Alliance, www.caregiver.org/caregiver%E2%80%99s-bill-rights 

Icons sourced from FlatIcon.