Quality of Life
In the beginning, trouble with my hands or difficulty on the stairs didn't seem to be such a big deal and denial was easy. This couldn't be happening to me. But as time passed and I had to quit a job I loved, give up kayaking, hiking and the like and relinquish my driving privileges, reality began to set in. When I started falling down and had to purchase a walker and wheelchair, I came face-to-face with some very hard truths.
What's worse, I was alone most of the time during the week as my husband had to work, everyone in my family works and my friends work. I was terrified and although I swore I would fight with everything I had and promised myself to keep a good attitude, there was too much time to think. And one of the things I thought was that if I ever reached the point where I could not take care of myself and became a prisoner in my own body, could not go to the bathroom, wash, feed or tend to my own needs, I would be done and would not want to go on. I knew at some point I would have to get someone in to care for me, but that made me feel worse rather than better because I could not picture myself helpless in the hands of a stranger. I was trying hard but could feel the smothering blanket of depression coming down around me, I was looking into the abyss.
Then Barbara, my caregiver, came into my life and I learned something very important. I believe that quality of life is a personal thing, we each have to decide what we can and cannot live with, but I now know that quality of care can make or break how you feel about living. Some of the people who care for the elderly or the infirm are not what I would call true caregivers, there is a difference and that difference makes all the difference. For those of us who need their help, we also need to keep our sense of pride and emotional independence. Barbara has a heart that is huge and a giving soul and she has become my friend, we are in this together and she is helping me to fight on. Instead of the helpless, self-conscious feeling of embarrassment that I had expected, I find comfort in her ministrations, camaraderie and empowerment. She helps me to keep my sense of self; I am about me, not my disease.
As my dear friend Tammy and a few others have proven, sometimes ALS stops progressing for no apparent reason. And there is always the hope for a cure. What I didn't know before but know now is that with the right caregivers by the side of those of us who need them, it is easier to fight, easier to hold onto hope, easier to live a worthwhile life. Family and friends are extremely important, but the caregivers are our lifelines.