MS CENTRAL QUESTION OF THE WEEK: HOW DO YOU CREATE BALANCE IN YOUR LIFE WHEN YOU ARE ALSO THE CAREGIVER?
This summer I learned some hard lessons about love, inner strength and endurance. My husband’s herniated disc reared its ugly head the week of my son’s high school graduation. His pain came on gradually and then became excruciatingly unbearable. He lay in bed for almost two months, leaving our bedroom only for medical appointments and physical therapy.
Our summer was a disaster. A special vacation of our son’s choosing had to be cancelled. Quality time as a family - going to the movies, eating at our favorite restaurants, spending time “down the shore” (a true New Jersey term!) and taking nature hikes – never happened. I was scheduled to fly to Dallas for a conference with friends I had trained with as a Peer Resource for a pharmaceutical company. My trip was cancelled.
As John Lennon wrote, “Life is what happens to you while you’re busy making other plans.” For 25 years my husband was my caregiver whenever my MS decided to rear its ugly head. Suddenly, our roles were reversed. I was the caregiver and he was the patient. He was dependent on me and I became more independent. The shoe was on the other foot. I was responsible for shopping, cleaning, cooking, paying bills, fixing the house, serving his meals in bed, bringing him his medications, and being his cheering-up section. At the same time, I was working to complete a certification program I was pursuing, while helping my son shop and plan to get ready for college.
For the first time in 25 years I didn’t have the luxury of putting my MS needs first. Naps? No time. Symptoms? No time to think about them. Meditation? Can’t fit it in. Exercise? Too tired. Diet? Cooking three meals a day for two men with healthy appetites doesn’t allow me time to cook a less caloric meal for myself. I started gaining weight, and it depressed me. I was tired ALL of the time. My legs were heavy, my tingling and numbness increased and, did I mention I was tired all of the time? Sadness and loneliness were now my constant companions. I felt guilty about how I felt about missing my summer, and felt guilty feeling this way when my husband lay in bed in pain.
Balancing your MS needs with the needs of your family can be quite challenging. I came to realize that what happened to me this summer is what happens to many women: the need to be perfect, even during a time of crisis. We think we can multitask and be all things to all people, and that is just not possible. I should have taken my own advice, the advice I give many newly diagnosed MS patients: make a list for yourself in the order of what is the most important task to the least. Take care of the higher numbered ones, and let go of the ones at the bottom. No one ever wants it said about them, “Her house was always clean” or “Her kitchen was always spotless.” I know now that I have to make my own list, set my own priorities, and get back to setting aside time for me and my needs. Giving myself a gift of time for myself won’t take anything away from helping my husband get well or preparing my son for his future. It will give me back a healthier and happier me!
One more thing: guilt is a waste of time and can only cause us stress. We all do the best we can, and we can’t expect any more than ourselves. We do what is within our emotional and physical power.
So, dear readers, let me hear your stories of when you became a caregiver, and what worked for you when also trying to care for yourself. Do you have something that works well for you that you can share? Or do you have a story you can tell us about being a caregiver while having MS? Any stories, suggestions, ideas or questions are welcome here. I look forward to hearing what you have to say!
Best in health,
Published On: August 15, 2011