One of the “givens” with ALS is an increasing need for assistance from care givers, and with that comes also the gradual loss of self-reliance.
When I was first diagnosed with ALS I said to the doctor, “I know its difficult for you to break the news to patients, but please know that with me I have two great assets going into this. I’m a Christian, so no matter on which side of the grave I’m standing, God is with me. And second, I have the best care-giver in the world!”
I was referring, of course, to my wife, Ruth.
What a strong woman she is! As slowly I have lost my ability to care for myself, the more she has increasingly and lovingly cared for me.
A wife of noble character who can find?
She is worth far more than rubies (Proverbs 31).
First to go was my appetite and my ability to chew and swallow food. So Ruth took up the slack by preparing daily three 12 ounce shakes loaded with nutrients. After one year I could not even look at another shake! So for the last two years she has faithfully fed me through a feeding tube three to four times a day.
With my clothing, first to go was my ability to work with buttons, zip zippers, and tie my shoes. That eventually led to her dressing me entirely.
Getting in and out of bed finally led to using a Hoyer Lift. When my legs turned to wet noodles, and having fallen eleven times (each occasion with its own unique story line and comedy!), an electric wheelchair became my home base. Again, the Hoyer Lift to get in and out of the wheelchair. Who became the expert with the lift? Ruth, of course.
Eventually I could not dry myself very well after a shower, so Ruth took over that job. And when using soap and shampoo was difficult—yep, Ruth took over. Now an aide helps her to shower me. With the lift they move me from the wheelchair into another chair built for showers. Then after the shower, its back to the wheelchair and the rest of the day.
Four or five times a day I use a cough-assist machine to clear my throat and airways. Who is there to help me? Yep. Ruth!
And there are other activities that are probably not appropriate to discuss in a blog!
We laugh about how little we knew or anticipated when we took our marriage vows—“in sickness and health, for as long as we both shall live.”
So, here’s to Ruth—my wife, my friend, my lover, my spiritual sister, the mother of our children. Valentines Day this year will be the 56th for us as wife and husband!