For the Caregiver: Principles of Self-Advocacy

Adapted from Take Care!, vol. 4, no. 4, published by the National Family Caregivers Association. For more information, please contact NFCA at 800/896-3650 or 9621 East Bexhill Drive, Kensington MD 20895-3104.

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 National Family Caregivers Association (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 a code to live by as caregivers.

We've now given form to the ideas we have developed and want to share them with you. We call them NFCA's Principles of Caregiver Self Advocacy. They are the fundamental tenets by which we now try to live, and we hope you will use them as guideposts in your own search for a sense of direction and inner peace.

1. Choose to take charge of your life
We caregivers often feel like victims, as if all choice has been taken away from us. We often ask: Why did my spouse/parent/child get sick, grow frail, have a genetic defect? Why did this happen to our family? Why did it happen to me? We so often feel out of control.

Jennifer Washington, whose mom has Alzheimer's disease, put into words what many of us think. "I feel as if fate has dealt me a bad hand. Just as I was starting to get my life in order, mom was diagnosed with Alzheimer's and she has moved in with us. There wasn't any other alternative. I feel betrayed by life."

Having a sense of control, or choice, is a relative thing and depends as much on our attitude as it does on our circumstances. As long as you are alive and mentally competent, you have the freedom to choose.

You can choose to accept your life with humor or with grumpiness. You can choose to be docile and accept every word a doctor tells you, or you can choose to question. You can choose to be overcome by the medical circumstances of your loved one's life, or you can choose to put the illness/disability in perspective and deal with it as part of your life -- but not as your whole life. Each day, we have the power to say, "Yes, I will do this. No, I won't do that."

We may not be able to control the course of a disease, but we can control how we live with it. Making choices is very empowering. Making choices, even little ones, puts us in control. We may not have all of the choices we once did, and we may even have to make choices that we don't like. If we recognize, however, that we do have the power to choose, and consciously act on those choices, we won't feel like victims any more.

Jack Mason knows the value of making conscious choices. He suffered from clinical depression for over a year because he was so devastated by watching his wife lose her abilities to Lou Gehrig's disease. Finally, he learned to value the time they had together and he chose to make the most of it, thereby ending the depression. Jack Mason learned to live by NFCA's first principle of self advocacy and he is a happier man because of it.

2. Honor, value and love yourself
Each and every one of you is an extraordinary person! Look at what you do, day in and day out. Remember those old Timex watches, the ones that John Cameron Swazy used to beat with hammers and run over with trucks on television? We caregivers are like those watches: "Give us a lickin' and we keep on tickin.'"

If you are like most caregivers, you are probably worn out and are questioning yourself all the time. But don't for a minute doubt how good a job you're doing. You owe it to yourself to take very good care of yourself, to love yourself.

You can't help someone else if you are gasping for air yourself, but that's what caregivers are always trying to do. You can't give, and give, and give without renewing your energy. We fill our cars up with gas when they are empty. Can't we be at least as good to ourselves? After all, we're worth it!

Just think, if caregiving were your formal employment, you would be getting at least two weeks of vacation a year. There are probably caregivers reading this article who haven't taken a vacation in a long, long time. You've got to love and take care of yourself.

Susan Steinberg made herself sick because she believed she was supposed to give without thinking of her own well-being. A mother of two young boys and caregiver to her husband, Jeff, who suffered a massive head injury in a car accident, Susan was constantly getting colds and the flu because she was run down. Her resistance was so low she developed walking pneumonia. It wasn't until after her mother-in-law begged her to take a vacation for the sake of her children that she woke up to how dangerous a lifestyle she had been living. Susan learned to love herself the hard way. Don't make the same mistake.

3. Seek, accept and, at times, demand assistance
Are you aware that 65% of the caregivers who responded to NFCA's 1994 survey don't get any help from family or friends? Perhaps part of the reason is because we don't ask for it, or don't accept it when it is offered. There is nothing wrong with asking for or accepting help. There is no reason to martyr yourself.

We have a history in this country of being strong and independent. There are many Hollywood movies that celebrate this pioneer spirit, but we are not Hollywood characters. We are real people with very real problems, and we can choose to martyr ourselves or we can choose to reach out, seek, accept and, at times, demand assistance from others to lighten the load.

We caregivers are often too meek, and we need to stand up for ourselves and our loved ones more. Let's face it, in many ways our lives are hard. Some of the basic functions and normal activities of life have been taken away from us and our loved ones. Remember, it is love and the desire to make things better for yourself and your family that motivate you. A little anger channeled toward positive action is not out of place under these circumstances. You have a right to ask for help and you have a right to be angry when you don't get it. Don't be afraid to stand up for yourself. It might actually make you feel good.

Often friends want to help, but they don't know how. We've all heard people say, "Call me if you need me. It may not sound like they mean it, but what do you have to lose by finding out? The worst anybody can do is say no. You might consider asking people to help with some of your regular chores, so that you have some time for yourself. If a friend is going to the supermarket or the dry cleaner, it really isn't any harder to pick up something for you also. In fact, those people who do want to help sometimes need a concrete suggestion on how they can benefit you the most. For example, the next time someone says, "Call me if you need help," try responding, "I need you right now. Would you be willing to stay with Jack while I get a haircut Saturday morning?"

Martha Keller, a single mother of an eight-year-old son with Down syndrome, shared her way of getting friends and family to help out. She called a family meeting and told everyone what she was experiencing. She made it clear that she needed help and couldn't bear the responsibility by herself anymore.

Martha distributed a list of all the ways people could help out and asked them which one they would be willing to take on. Her strategy worked and now Martha Keller has two committed weekly helpers. When asked why he wasn't helping before, Martha's brother Tony said, "She didn't ask." There's a lesson in that simple statement for all caregivers.

4. Stand up and be counted
The last, and perhaps most valuable part of NFCA's Principles of Caregiver Self Advocacy is based on the strength that comes from knowing you are not alone and the belief that there is power in numbers. Caregivers represent approximately 10% of the adult population of this country. Nobody knows exactly how many family caregivers there actually are, but estimates range from 18-25 million. That's more people than live in New York, Philadelphia, Houston, Chicago and Los Angeles combined. We are everywhere, but we are invisible.

Consider how great it would be if caregivers joined together to fight for equitable treatment, for more services, for self respect. Look at the change in the status of women in our society because women stood up for themselves. The women's movement has pointed out the subtle -- and not so subtle -- inequities in our society that have kept women down.

At NFCA, we believe in the need for a caregivers movement in this country, a movement to gain visibility for caregivers, to broaden services, to enhance respite opportunities, to provide Social Security benefits and other kinds of support to full-time caregivers.

There is a wonderful feeling of empowerment that comes from standing up for yourself, from choosing to act on your own behalf. There is a wonderful feeling of empowerment that comes from recognizing you are doing a very hard job and doing it well. There is a wonderful feeling of empowerment that comes from recognizing your own worth, from knowing that you are not alone and that millions of others share your same concerns and feelings.

Moving Ahead Together
We family caregivers can be a powerful force for change in our own lives and in the lives of our loved ones, if we are willing to be our own advocates.

We hope you will use these principles to take control of your life, to honor, value and love yourself, and to find the help you need. Stand up proudly and be counted as one of America's family caregivers. (For more information, call NFCA at 800/896-3650.)