REALITY

As I sat this morning next to my daughter Ellen, I noticed that she is still hooked up to a feeding tube, has a treacle and experiences pain almost like clockwork, causing her to not eat her breakfast. She lies on her bed and nods off and on occasion our eyes meet, sometimes smilingly.

I am starting to wonder how long we can as a family hang on to this situation in watching her suffer and the countless hours we are spending with her to soothe her fears. She doesn’t speak and she understands very little. Her guard is constantly up as she watches the various personnel that comes into her room and administer to her. She doesn’t leave her room and the only changes she might see during her day is when she is physically switched from the bed to a jerry chair.

My wife is supposed to be retired and spends it sitting in my daughter Ellen’s room at her bedside as I do also. This situation has caused me to wonder how much life must be wasted, especially in our so-called golden years. Is this a prison sentence? Are we paying for a crime we have committed? Can someone read us the sentence or even what that crime is?

The thought of Hospice has occurred to me, and the fact that if we stopped all the tubes she would probably pass. This sounds like a heartless solution to a basic problem, sustaining life or wasting life. Do we sustain her life for the sake of keeping her to live this non-existent torture that leaves her with no future other than additional pain, or do we save what is left of our lives as a family? She has two brothers and they, I am sure, want her to live, but do they want us to be reduced to the same pointless meaningless future their sister is now facing?

So, do we plan for hospice and apply for the Molst form?