Since her diagnosis in 1997, I've watched my wife's MS progress so fast that "progressive" doesn't seem to do it justice. Sometimes I've thought the better diagnosis would have been "MS at break-neck speed". Nonetheless, as Jeanne's situation has continued to change so has my role as her caregiver.
Initially, I was Jeanne's fellow "battler of MS". We dreamed and schemed and attempted to live life as though MS was some abstract notion and not the constant visitor it eventually became. The next stage required that I be the "spouse who left no stone unturned." If there was some lone medical researcher in a lab located thousands of miles from the nearest hint of civilization -- that poor researcher was getting an email from me...and a follow-up phone call...and whatever other form of communication was required to determine if the hope of a meaningful treatment for Jeanne was on the horizon. And all the while, her disease still progressed.
Now, my role is to make Jeanne as comfortable as possible. Each day lends its own meaning to those responsibilities. Even after 10 years, I still have moments when I find myself profoundly sad that I couldn't save Jeanne from her MS. I remind myself that we can't really save anyone...as if remembering that does much good.
I still get confused over what a caregiver's quality of life should be. Do I live my life to the level of Jeanne's disabilities? Do I have a right to happiness in spite of Jeanne's disabilities, as so many friends remind me? The good news/bad news here is that I have lots of time to consider these questions. While we are fortunate to have a live-in caregiver to stay with Jeanne and enable me to go to work each day, I become Jeanne's caregiver at 7:00PM each weekday and throughout each weekend. Jeanne tends to nod off to sleep around 7:30, so I face most every night alone, our home providing a dark, still backdrop for me to consider the questions...feel the guilt...get in touch with the loneliness. And, ultimately, find the strength and resolve to re-commit myself to providing the very best quality of life and never-flinching positive attitude for the amazing and most deserving woman asleep in our bedroom.
Now, some of you may have expected me to tell my story in terms of "the things I do" in the course of being a caregiver for my wife. Brush her teeth...comb her hair...get her dressed. But that's not my story...that's just the stuff that I do. It's probably similar to the stuff most eveyrone else does. As for my story -- come back often and read my posts. That's my story -- imperfect moments and all. Written and lived in real-time.
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