Family Issues Archives

Parents as Caregivers
By Nancy Miller, Ph.D.

When you hear the word "caregiver," do you think of that as applying to you? Many people think of caregiving as taking care of an adult family member who is ill, or aging, or has a disability. When I talk to parents who have a child with special needs, I try to emphasize all the extras that go along with it: extra care, extra time, extra money, extra energy, extra patience, extra appointments... ALONG WITH extra appreciation for the people who are there to help you and your child - professionals, other parents, family, friends; extra joy in seeing your child struggle to accomplish a new skill, learn a new word, eat a new food; extra thought to what's really important in life.

All of the extra-parenting you do every day is above and beyond the parenting that most "typical" parents do. You are a mom, a dad, a teacher, a coach, a cheerleader, a playmate, a nurse, a therapist (not to mention chauffeur, social director, insurance manager, appointment maker, chef for special dietary needs... Need I say more?).

You are a caregiver. All of your parenting stuff is typical: it's what you expected, planned for (maybe), and is part of the parenting package. All of your extra-parenting is not typical. Even if your child has no special medical, behavioral, educational, or therapeutic needs right now, you have extra concerns about today and tomorrow that typical parents just don't have. You use more energy, worry more, (and probably talk about your worries more), and may very likely take less good care of yourself than you should!!

A year ago I had the great privilege of participating in a national caregiving conference sponsored by the Pfizer Foundation, and sharing my thoughts about parents as caregivers with about 20 other people who are active in all kinds of wonderful caregiving programs around the country. At that meeting, I met Suzanne Mintz, who founded and is Director of the National Family Caregivers Association. She is a true inspiration, and the Association provides support, information, and caregiving articles and advice to adults caring for their parents, siblings, spouses, and children with all kinds of special needs.

The NFCA has written the Principles of Caregiver Self Advocacy, and I asked for their permission to reprint it here. I hope you find it inspiring, uplifting, and motivating!! 

 

Principles of Caregiver Self Advocacy
(A Reprint from the National Family Caregivers Association)

What does it mean to be a happy person when you are a family caregiver? 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 the National Family Caregivers Association (NFCA) 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 many ideas we have discussed, 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 too will use them as guideposts as you come to terms with your life as a family caregiver.

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, have an accident? Why did this happen to our family? Why did it happen to me? We so often feel out of control.

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 may not be able to control the course of a disease or the effects of an injury, but you can control how you live with it. You can let it take over your life, or you can let your life progress and incorporate your loved one's disability into it. You may not have all of the choices you once did, or you may have to make choices now that you don't like, but if you recognize that you do have the power to choose, and you consciously act on those choices, you won't feel quite as much like a victim any more.

CHOOSE TO TAKE CHARGE OF YOUR LIFE is the first of NFCA's principles of caregiver self-advocacy.

The second principle is HONOR, VALUE AND LOVE YOURSELF. 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're doing a great job! And you owe it to yourself to take very good care of yourself, to love yourself. Are you familiar with the safety message that airline stewardesses give during take off? "If the cabin loses pressure, an oxygen mask will drop down from the bulkhead. If you are traveling with a small child, or someone else who needs assistance, put your own mask on first." They are right. You can't help someone else if you are gasping for air, but that's what caregivers are always trying to do. You can't give and give without renewing your energy. We fill our cars up with gas when they are on empty. Can't we be at least as good to ourselves? After all, we're worth it!

Are you aware that 76% of the family caregivers who responded to an NFCA survey last year don't get consistent help from other family members? 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 in asking for, or accepting, help. There is no reason to martyr yourself.

SEEK/ACCEPT AND AT TIMES DEMAND ASSISTANCE from others to lighten your load. That's NFCA’s third principle of caregiver self advocacy. You have a right to ask for help, and you have a right to be angry when you don't get any. 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," and we question whether they mean it. What do you have to lose by finding out? The worst thing anybody can do is say no. In fact those people who do want to help sometimes need a concrete suggestion on how they can benefit you the most. The next time someone says: "Call me if you need me," try responding, "I need you right now. Would you be willing to stay with Jack while I go get a haircut on Saturday morning?"

The last and perhaps most valuable part of NFCA's Principles of Caregiver Self Advocacy is the strength that comes from knowing you are not alone, and the belief that there is power in numbers. Caregivers represent more than 10% of the adult population of this country. Nobody knows exactly how many family caregivers there actually are, but estimates suggest that there are more than 25 million. We are everywhere, but we are invisible. At NFCA, we believe we need a caregivers movement in this country to gain recognition for caregivers, to broaden services, to educate caregivers and to provide us with more support. There is a wonderful feeling of empowerment that comes from standing up for yourself. There is a wonderful feeling of empowerment that comes from recognizing your own worth, from knowing you are not alone and that millions of others share your same concerns and feelings. Family caregivers can be a powerful force for change in their own lives, and in the lives of their loved ones, if they are willing to be their own advocates. STAND UP AND BE COUNTED, that is NFCA’s fourth principle of caregiver self advocacy.

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. Together we can gain recognition and benefits for ourselves and for all caregivers across this great land. Stand up and be counted. It will make you feel great.

 

Reprinted with permission of the National Family Caregivers Association (NFCA). NFCA is a not-for-profit, national membership organization striving to make life better for all of America's family caregivers.

For information on the National Family Caregivers Association call: 1-800-896-3650 or check out their web site at: http://www.nfcacares.org.

 

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