As a caregiver, or "personal assistant" as I like to refer to myself, it is very difficult not to be deeply saddened by the hardships suffered by those for whom I care. At this time, my assignment takes me into the long, sad goodbye of ALS.
As the ability to speak becomes impaired, or begins to go away completely, a huge chunk of life's joy is stolen. Consider what it would be like to have a great thought, a funny joke, an observation, to add to the family's conversation at the dinner table - but nobody hears you. Your lips move, and you try to summon the air and the strength to be heard above the clamor, but nobody is watching. Nobody is listening. So you lift your eyebrows and shake your head slightly, two of the movements still allowed by your failing body, and you open your mouth to allow your caregiver to continue to feed you. The thought will pass.
ALS is a deliberate and focused thief. It takes every part of human independence, one function at a time. It does not, however, touch the personality, brain function, or physical sensation.
If you have a family member or friend with ALS, and they are having difficulty communicating, please know how frustrating and degrading this can be. Please, please listen. If they could, without losing that last shred of dignity, they'd plead with you "Listen to me. Please." All too soon they will be silent. The disease is relentless, and like a flood, it seeks out places to destroy. It will destroy the ability to speak. It's just a matter of time.
Ruth this made me cry. It has been 7 years since this awful disease took my father from me and from this beautiful world. He was so full of life and energy his whole life. I remember staying with him in the hospital the last week of his life, he had withered down to hard anything. He could hardly eat nor breath on his own. He was struggling to talk to me but it seemed that was the one thing he fought his hardest to keep and not let slip away from him. I pray for every person in the world that has to suffer this slow painful death, that one day a cure will be found so the suffering will stop. My Dads faith in the lord kept him at peace and helped him except his fait. Maybe your voice will help bring more awareness to ALS and reach out to more petiole with it or families of people who have/had it. All I can say is thank you!
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