DIMENSIONS Summer 2004

Caregiver Self-Advocacy: 4 Messages to Live By

Each issue of Dimensions features an article contributed from an Alzheimer’s related group in Washington State. This article is contributed by the National Family Caregivers Association (NFCA) and reprinted from their website with permission of the NFCA.

What does it mean to be a happy person when you are a family caregiver? How can you gain a feeling of confidence in your abilities and have a sense of pride in your achievements? How do you stand up for yourself, take care of yourself and find a balance between your own needs and those of your loved ones? These are heady questions, and ones that we have discussed often at NFCA.

We’ve looked for answers in our own experiences, in books, from professionals, and from other caregivers. We’ve struggled with these issues because they are at the core of our search for meaning and our need to have principles to live by as caregivers. We’ve now given form to the many ideas we have developed, and we want to share them with you. We call them NFCA’s Principles of Caregiver Empowerment. They are the fundamental principles by which we try to live, and we hope you will use them as guideposts in your search for a sense of direction and inner peace.

1.  Choose to take charge of your life. Don’t let your loved one’s illness or disability always take center stage.

We fall into caregiving often because of an unexpected event, but somewhere along the line you need to step back and consciously say, “I choose to take on this caregiving role.”  It goes a long way toward eliminating the feeling of being a victim.

2.  Honor, value and love yourself. You’re doing a very hard job and you deserve some quality time, just for you. Self-care isn’t a luxury. It’s a necessity.

Self-care isn’t a luxury.  It is your right as a human being.  Step back and recognize just how extraordinary you are, and remember your own good health is the very best present you can give your loved one.

3.  Seek, accept, and at times demand help. Don’t be ashamed to ask for help.  When people offer assistance, accept it and suggest specific things that they can do.

Caregiving, especially at its most intense levels, is definitely more than a one person job.  Asking for help is a sign of your strength and an acknowledgment of your abilities and your limitations.

4.  Stand up and be counted. Stand up for your rights as a caregiver and a citizen.

Recognize that caregiving comes on top of being a parent, a child, a spouse.  Honor your caregiving role and speak up for your well-deserved recognition and rights.  Become your own advocate, both within your own immediate caregiving sphere and beyond.

For more information about the National Family Caregivers Association in Kensington, MD, contact 1-800-896-3650; www.nfcacares.org

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