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CAREGIVERS NEED CARE, TOO! By Shirley Soleil INTRODUCTION: Caregiving is an ongoing activity. Each and every day you give care, words of comfort and encouragement, do extra chores and errands, and try to be a spouse, parent, friend, wage earner, support giver and an individual meeting your own needs. It is a demanding, often thankless task. Are there ways to change this experience into one of more positive value? I think there are. If you are willing to take the time, effort and energy to move into a more positive lifestyle then you can achieve things that you never dreamed possible. SOME OF THESE CHALLENGES ARE:
CHANGED LIFESTYLE: Each individual is really a creature of habit. The same can be said about the family unit. There are unique habits, traditions and expectations within your family. Often, without realizing it you pick up a lifestyle that reflects the society you are living in. The bottom line is you as a family interpret and then act out a lifestyle that is comfortable and acceptable to you. You have a sense of security and safety in this lifestyle. So what happens when chronic illness strikes a member of the family? The family experience challenges that encourage change. No one likes change but it is necessary if the family is going to survive and grow. As a Caregiver the first and most important point to remember is to take care of yourself. If you ignore your needs and even wants on a regular basis several things can happen. You may:
Others may not understand the changes you make to help yourself. Family members may get upset because you expect more of them. As long as you were willing to do everything, others let you. Don't expect others to jump right up and help. Perhaps you were a Caretaker rather than Caregiver. Be aware of going on "guilt trips". There are ways to help yourself and others move into a different lifestyle. Ask yourself the following questions:
After delegating work, fight the urge to do it if it is not done right away or the way you would do it. Discuss when it needs to get done. If you're dealing with children and young people, agree on a discipline for a broken agreement. If family members continue to refuse to do an errand or chore, then there is a need to talk about what's really going on. Your child may be reacting to having a different person in charge, may be anxious about what these changes mean, etc. TAKING CARE OF YOURSELF: Taking care of yourself may take on different forms at different times. Taking time to vegetate, read, soak in the tub, watch/attend a sports event, go to a church/social event, or a support group is important. It takes discipline and determination to give yourself permission to enjoy life. There are often people in the community; at the local church; social club, Social Services or Home Care to help give you quality time to yourself. Don't forget to have fun with others. The dishes can wait, the floors can be scrubbed/vacummed tomorrow. Family members may be willing to help with these chores if the opportunity to have fun is at hand. There will be times the family member suffering from a chronic illness can not participate, still take time to do some of the things the rest of you like to do. Then plan something like watching a video with the family member who needs to stay at home. If you live alone with an ill person, you can still follow the above suggestion. Doing fun things helps distract the ill person from his/her illness. Laughter releases endorphins. These neurotransmitters, when released, give pleasure and are a natural narcotic. If relatives, friends and peers have have stopped interacting with you, work through the grief and anger this causes. You'll discover other friends around the corner in support groups, etc. REMEMBER TO COMMUNICATE: Answer questions honestly and with respect. Remember and consider the level of understanding of the person asking. There are no silly questions. Often, the biggest fears of living in a home of a chronically ill person are:
The main guilt comes from:
Making sure there are opportunities for open communication is a challenge but it is the best way of helping everybody deal with the changes. Communicating openly with the family member who is ill may be more difficult. You need to express your feelings and listen as she expresses hers. You are allies with a common problem. Tell her what you need and ask her what she needs. No human being can meet all the needs of another but we can meet some. Have an agenda for communication:
A Final Comment: Support from friends, family, those who are living a similar experience, and professionals is vital. Maintaining friendships is important to both of you. Change what you do together rather than not see each other. Your loved one is not at fault for her illness and the limitations it causes. When you start questioning the patient, stop and think what it was like to have the worst flu ever. Realize that this is how it is for your loved one twenty-four hours a day, every day. Remember what she was like before the illness; energetic, active in family and community affairs, etc. Do you really think she wants to give all that up for a year or so in bed, not being well enough to go to work, thinking and feeling like she is not a productive member of society? Be careful not to see yourself as the fixer - you can't fix this - or as a martyr - giving up your identity doesn't help anyone. Make sure to see your loved one as the person you have valued for however long you've been together. Show her how much you appreciate her, her personality, her smile, her words of encouragement, etc. Help her not to use her illness to feel self-pity, to abuse you or other family members, lose the sense of commitment to life, your relationship, the family, moving towards better quality of life and wellness. Encourage her to join a support group, or go to counseling if necessary to help her stay on track. CONCLUSIONS: It is hoped that:
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