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by Eunice Beck, R.N.
February 12, 2003
Dear Friends,
Thanks to my readers, I seem to have good subject matter lately. The subject that has come up often recently is helping spouses to understand the disease, pain and fatigue.
Depending on the gender of the spouse, the response may be somewhat different. Men in our society are taught to “be tough” and when faced with pain or discomfort, to “suck it up.” Some husbands display this attitude toward their wives who are a PWC/PWFM [Person with CFIDS/Person with FM]. On the other hand, women are taught to be nurturing and to “take care of (others),” and may be inclined to treat their male spouse in this way. Please be assured that I know I am generalizing here, and there are spouses that do not behave according to these stereotypes, but I needed a place to start (please, no mail!)
In an article in the ImmuneSupport library, A road map for caring for someone chronic illness (reprinted with permission from The CFIDS Chronicle Vol. 14 No. 1 Winter, 2001), Lori Flaherty says, when speaking about CFIDS (I think the same applies when talking about Fibromyalgia):
As a caregiver of a PWC, you may be required to fight with health care insurers, disability insurers, and physicians, so take the time to educate yourself about the illness. Not only does learning everything you can about CFIDS help you to educate others, it will help you to better understand what your loved one is facing.
Because CFIDS symptoms can wax and wane, it’s important that caregivers recognize that making plans will be a difficult and integral part of coping with this disease. When CFIDS symptoms flare up, many PWCs will not be able to participate in planned activities or even get out of bed.
Not only does caring for someone with a chronic illness require adjusting career and financial goals, it means realizing that many of your hopes and dreams will be unrealized. Kate says that the core pain in her life as a caregiver is feeling helpless and cheated. “This isn’t how my life, or hers, was supposed to be. I’m not supposed to be taking care of an invalid for another 40 years.” Manie McBride, a PWC from Boston, agrees that lifestyle changes for caregivers are difficult.
Perhaps most important, however, is that caregivers need to recognize that they are not alone: their loved ones are still responsible for their own lives. And PWCs need to realize that chronic illnesses don’t just affect those afflicted with them.
David J. Levy, a well-known speaker and writer on family caregiving, says, “When families are confronted with chronic illness, the disease tends to be the center of the universe, with everything happening in association with the illness. Life can quickly revolve around medicine-taking, doctor appointments, and how the patient feels.”
(http://www.immunesupport.com/library/showarticle.cfm/ID/3352/searchtext/caregiving/T/CFIDS_FM)
It is important for the PWC/PWFM to recognize that losses for one’s family are just as great as your own. It is normal, and helpful, for your caregiver, and other members of your family to go through the grieving process just as you do. Feeling frustration, anger and resentment at the roles you many no longer be able to fulfill is common. We must realize that although family members know that the changes/losses they feel are not our fault, these negative feelings may be directed at us. We need to understand that these feelings have validity, and allow them to be expressed without letting them damage our relationships. I imagine many of us have these same negative feelings directed toward ourselves, and have to make a concerted effort to remember that blaming ourselves will have negative effects to both our physical and mental health. I don’t think any of us chose to have this DD.
Maintaining good communication with your family members is very important. This is especially true in the area of intimacy. This is a difficult area for many of us due to fatigue and pain levels. But loving, and honest discussion with one’s spouse can help find ways in which to continue this very important part of your relationship.
By allowing, and encouraging your caregiver/spouse and other family members to express their feelings, positive and negative, in an open and honest way, you and your family will find new ways to function in a positive manner. It is also important to remember that our spouses need their time to care for themselves both physically and mentally. I can remember when I was caring for my mother when she had cancer. I would occasionally ask one of her friends to come and stay with her so I could go to a movie. She could not understand why I needed some time for myself. It didn’t matter if I enjoyed the movie. I just needed the break from constantly being the caregiver.
Both you and your family members need to attempt to find the positives in your lives, and enjoy them. Laugh together. Cry together. If there are people in your lives who do nothing but criticize or give advice, eliminate them from your group of friends. Spend time with positive people. Build a network of friends who provide a supportive environment for you, so you don’t depend solely on your spouse for your emotional support. Your spouse will need emotional support from others as well. Sometimes it’s amazing what an afternoon of golf or whatever, away from the house, can do for one’s frame of mind.
Do as much for your self as you can. That means taking care of yourself by getting exercise, drinking liquids and eating in a healthy manner. It means caring for yourself spiritually, whether the approach is participating in personal or group worship, or meditation or both. Encourage your spouse to do the same. But when you do need help, learn to ask for it. Accept it gratefully, and say thank you. There are special ways you can show your appreciation for all that your family does for you, and I’m sure you will find them for your family.
It is key to maintain the best communication possible. Remember that it is not only your life that has been changed by this DD. Allow and encourage discussion and expression of feelings from your family. Be open and honest about expressing your emotions as well.
For those of you who would like more information or ideas on helping your spouse/partner or other family members understand and cope with the changes this disease makes in your lives, please send me an email. I have a number of web references I can give you. Also, be sure to visit Pro Health’s Care Giver’s message board at http://www.immunesupport.com/chat/forums/index.cfm?B=CareGivers.
Take care and be well.
Yours in health,
Eunice
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I welcome your comments and questions at: copingcorner@prohealthinc.com. My
articles and email responses are not being offered as those of a health care
provider. The information and opinions included are intended to give you
some information about your disease. It is very important that you empower
yourself with knowledge and participate in your own search for care. Any
advice given is not intended to take the place of advice of your physician
or mental health care provider. Always follow your physician's advice, even
if contradicted by something written here. You and your physician know your
situation far better than I do. Thank you and be well.
Eunice
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