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THE INTERNATIONAL NEWSLETTER FOR THOSE FIGHTING OVARIAN CANCER!

"10 Tips Series for Coping"  
10 Tips for for Care Givers
By Jim Acee
This is #4 in a series of articles compiled by Jim Acee,  husband and caregiver for Savanna Acee who was diagnosed in June 1995 with stage III ovarian cancer, had six rounds of chemotherapy, and then a recurrence in July 1996 with metastasis (spread) to the liver and diaphragm with seeding throughout the abdomen. Savanna was placed on hospice in September 1996 and given only months to live. She subsequently survived with a high quality of life for 10 years using a combination of alternative, complementary and traditional (chemotherapy) treatments. For more information on Savanna's treatment methodology, or to discuss your cancer-related concerns contact Jim  at  jimacee@hotmail.com , call 208-384-1708 (mountain time zone) or write to Jim Acee, 4024 Whitehead, Boise, ID 83703, USA.

Future "10 Tips" articles will appear each month in the CONVERSATIONS! Newsletter. Previously published articles in this series are in the "10 Tips" section of http://www.ovarian-news.org or send a stamped, self addressed envelop marked "10 Tips Series" to CONVERSATIONS! PO Box 7948, Amarillo, TX 79114.

1) The opportunity to serve another as a caregiver can be a spiritual gift that brings amazing personal growth. Consider caregiving as a service, not a sacrifice. Think of yourself as a caregiving angel, not a caregiving martyr. Thinking of your actions as sacrifice will eventually make you feel resentful, and the one you are caring for feel guilty.

2) Determine your overall commitment level. Try to decide how much of your time and energy you can or want to give. How much of your life do you truly want to dedicate to the healing of another? It’s okay to say, "I have to stop here to maintain my mental and physical well-being." When you know your limits, you can seek other care alternatives. Then martyrdom, resentment, and abandonment become less likely.

3) Take breaks from caregiving. This is critically important! Get help from friends, relatives, volunteer organizations, or professional health care service providers to allow yourself time to regenerate your energy, your commitment, and your own self-fulfillment. Most primary caregivers find that friends and relatives tend to diminish their caregiving participation over time, so turn to volunteers and professional home health providers. Find these services by contacting your cancer treatment center, your local American Cancer Society office, wellness centers, volunteer organizations, and local social services or church groups. Look in the business or yellow pages of your telephone directory under "social services".

4) Encourage independence. Be ever watchful for ways to help your loved one move toward self-reliance. It’s easy to fall into the hero or heroine role. "Let me do that for you," often denies a person the chance to feel personal power and control of their healing process. Similarly, don’t succumb to requests for services they could do themselves. This is a disservice to both of you, and does not promote either healing or a healthy relationship.

5) Seek information to make yourself the best caregiver you can be. Find someone you can talk to who has gone through (or is currently dealing with) caregiving for the types of cancer and treatment side effects you are dealing with. Join a caregiver support group, start one yourself, or search the Internet for caregiver discussion groups specific to the type of cancer you are facing. For ovarian cancer, try http://www.acor.org and then click "Mailing Lists" and scroll down to "Ovarian". Cancer survivor discussion groups are also great places to pick up caregiving tips. On the same site, scroll down to "Long Term Survivors". To locate local caregiver support groups, contact your cancer treatment center, the patient resource center of a cancer treatment facility, or the nearest American Cancer Society branch. If you are not familiar with using the Internet to search for information, ask a friend, or ask for help at your local library where Internet access and assistance is often available and free. A good resource book for caregivers is the Home Care Guide for Cancer edited by Peter Houts (American College of Physicians, 1994, $29.95)

6) Become as knowledgeable as you can about the type of cancer your loved one has. Read the basic literature, but consider it only a start. The more you know, the better advocate you can be in the treatment and healing process. Also, become informed about the various traditional, complementary, and alternative treatments that are available. To search the Internet for information, try http://www.webcrawler.com and then type in a search for "ovarian cancer". Be sure to include the quotation marks. A few good books on complementary and alternative healing are Cancer: Increasing Your Odds for Survival by David Bogner, Choices in Healing by Michael Lerner, and Third Opinion by John M Fink. It is widely believed that those who are intently involved in their medical care decisions are more likely to survive. Often, this responsibility to stay informed and to do the searches falls on the caregiver.

7) Learn when to be a coach and when to be a cheerleader. Realize that there are times for you to express "tough love" and confront healing and relationship issues with your loved one. At other times, you’ll need to be completely on their side, in spite of their short comings. When do you support them, and when do you give them a kick in the butt to motivate them? This is a tough issue and you can only do your best and learn from experience.

8) Find a time and a method for conflict resolution. Often stresses and tensions build up between the caregiver and the one receiving care, so it is important to have an open and ongoing communication about each other’s frustrations. Be honest, but gentle and empathetic. Also, pick a time when the other person is feeling strong enough to face the issues. If your attempts at self-resolution fail, get professional counseling. Preventative counseling is another approach that works well. You know cancer and its treatment will cause stress in your life and between the two of you. Get counseling before the conflict happens, so you can better deal with defusing it. Ask your local cancer sources to refer you to a good psychologist who has experience with clients who have cancer.

9) As caregiver, learn to be a good patient advocate. Mistakes will be made by health care professionals as you go through a lengthy treatment process. Be alert and assertive–but not offensive–when being a patient advocate. For example, if someone starts changing a dressing without washing their hands, politely remind them that the person they are helping had chemotherapy and has a suppressed immune system. In the hospital, and with professional home health care personnel, you may want to keep you own chart to document that what is supposed to be done, is being done. Be there, observing the care, treatments, and medical procedures. And be bold in advocacy, even for yourself. For instance, you might request a second bed be put in the room for you when you are staying long hours or overnight at hospitals.

10) Most importantly, be demonstrative with your love. Say, "I Love You" in as many ways as you can, and say it often. Write it in notes and cards, or put it in a poem. Make it constantly visible. Post it on the bathroom mirror, hang it as a mobile above the bed. Whatever way you can, express your love. Ask others who care to do likewise. Love heals.

Copyright  2000 Jim Acee and CONVERSATIONS!, (Permission is given to make personal copies or copies for free distribution to cancer fighters.)  Available on the web at:  http://www.ovarian-news.org under "10 Tips Series for Coping by Jim Acee."

Notes to Jim’s article:

A free audio addition to the Cancer Survivors Toolbox series focuses on Self-Help for Caregivers. I have not yet heard this tape and know very little about it, but if the quality is the equal to previous tapes in this series, I know it will be helpful. This tape is a joint project between the National Coalition for Cancer Survivorship, Oncology Nursing Society, and the Association of Oncology Social Work. For a free copy of the tapes, call NCCS at 877-622-7937 or go to http://www.cansearch.org

The National Family Caregivers Association is a group dedicated to making life better for family caregivers. There is some information on their web site http://www.nfcacares.org  Call 800-896-3650 or e-mail info@nfcacares.org

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