Tips for the Caregiver
By Bruce Campbell
(From the series Recasting Relationships and Building Support.)
Note: Most of our articles are written for people with CFS and FM. Here's one for people who help individuals with CFS or FM.
Living with someone who has CFS or FM can be a stressful experience. You may take on extra responsibilities, experience financial strain, feel frustrated and resentful at times, lose companionship, face uncertainty about the future, and experience both reduced socializing and sexual difficulties.
In response to the pressures created by serious illness, here are nine ways to take care of yourself.
1) Maintain Your Health
This is the number 1 recommendation of experts on caregiving. To serve your loved one well and to avoid resentment and burnout, take time to get adequate rest, to eat well and to exercise.
2) Accept Help
When people offer to help, accept the offer and suggest specific things that they can do. If your finances allow, consider paying for help in such areas as meals, housecleaning and transportation.
3) Take Time for Yourself
Get a respite from caregiving by spending time away from the person who is ill, for example by pursuing a hobby. Give yourself an opportunity for leisure and enjoyment, a way to recharge your batteries.
4) Educate Yourself
Seek information about CFS or FM, especially strategies for reducing symptoms and improving quality of life. One source is the articles on this website. See the article Educate Yourself for a list of patient organizations, websites and books about the two conditions.
5) Stay Connected
Avoid isolation and reduce stress by maintaining relationships with extended family and friends. This may mean getting together regularly for exercise or cards with friends, spending time with children or any other kind of socializing that keeps you connected with others.
6) Consider Counseling
Be sensitive to signs of stress and consider seeing a counselor if you detect them. Signs that counseling might be appropriate include feeling exhausted, depressed or burned out, or over-reacting, such as by angry outbursts.
Counseling can be helpful for gaining perspective on your situation or to explore communication problems. You might get help in individual sessions or in joint sessions with the person who is ill.
7) Grieve Your Losses
Just as people with CFS and FM experience many losses, so do family and friends. They are deprived of part of the companionship the patient used to provide, as well as her work around the house and, in many cases, financial contributions. And, just as the person who is ill has lost the future she hoped for, so do family members have to adjust their dreams for the future.
Like patients, family members, too, need to grieve their losses. In the words of one patient, "I lost my health, but my husband lost the woman he married." For ideas on how to work through loss, see the chapter 16 in text for our introductory self-help course.
8) Create New Shared Activities
Serious illness may make it impossible for you to spend time with the person who is ill in the same way as before, but you can develop new shared activities to do together. One couple told us they took up the study of music using courses on DVD. The husband in another couple said that once he realized his wife's new limits, they shifted from camping and hiking to dinner and a movie.
The point is to create occasions for shared pleasure, so that the relationship is strengthened and both ill and healthy members of the family don't come to see their relationships as just about illness and deprivation.
9) Seek Support from Other Caregivers
Fellow caregivers can offer strength, support, inspiration and models of successful adaptation. You might meet such people through patient support groups. Also, we offer a self-help course for family and friends of people with CFS and FM.
Caring for someone with a serious illness is a stressful experience, but there are many ways to take care of yourself.