Being A Fibromyalgia Caregiver

1. Being A Fibromyalgia Caregiver R. K. Patterson

2. The Patterson Family • My wife and I have been married for over 30 years • We have one grown son. • Both my wife, and later my son, were diagnosed with fibromyalgia and chronic fatigue. • She holds a BS in Computer Science and was forced to leave a $40K per year job. • He graduated Cum Laude from college and was forced to leave a teaching and a coaching position. • They are now both totally disabled.

3. I Became A “Caregiver” • I had to remain diligent and supportive to help my wife and son get the correct diagnosis. • I watch my former sports loving and playing son have trouble standing, walking, and being in pain. • I lost my dancing partner when my wife could no longer participate for more than one slow dance. • My formerly cheerful, energetic and “in charge” wife became angry, sad, anxious, constantly tired, and often unable to make decisions or handle the budget because she couldn’t think straight.

4. Life Changes For All • I became the sole wage earner while instantly losing 1/3 of the family income, and had to take over the family budgeting. • My son helped my wife with the household chores until he became ill. Then almost all chores fell to me because they were too tired, or in too much pain almost daily. • I learned to live with a messy house, eating out, and fewer entertaining outings. • We were quickly immersed into deep debt.

5. Living For Others • I had to re-learn household routine and what was acceptable behavior on my part. • I supported my wife and son in getting proper medical treatment and surviving the quests for disability – not an easy endeavor. • I have to remind them that they are not worthless and of little value. • I have found myself an “expert” in “caregiving”.

6. Being A Buffer Zone • Explaining to other family that “things are different”. • Received and gave help at local support groups. • Shield wife and son from stressful situations and difficult people. • Challenged the medical community. • Searched for answers/solved problems. • Encouraged them to enjoy friends and happy interests.

7. Gauging The Territory • Learn to evaluate how the person feels every day. • Get used to seeing your person fewer hours and at unconventional times. Without pattern. • IF a “Good Day” is possible, accomplish what is IMPORTANT to the well-being of the person and your relationship but help the person not to over-do. • If you feel a “Bad Day” is in order, set a course to do whatever you can to make it better tomorrow. • Help the person learn to pace herself. • Be flexible to last minute change in schedules.

8. Enjoy Life, This Isn’t A Dress Rehearsal • Set priorities for what’s really important. • Enjoy the time you have as much as possible. • Learn to take advantage of opportunities when they present themselves. • Use person’s rest periods to pursue your interests: you need a life, too. • It may not be the life you all chose, but it is your life. Find ways to make it work.

9. Surviving Is Possible • You have just seen that you are not alone on this path! • You can use local support groups and other resources to hold onto the relationship that you have with the person, while becoming a better, more informed person yourself. • Information on many of the situations you will encounter can be found at www.foothillsfibro.org