Friday, May 27, 2011

Major Changes

I'm having to feed Lizzie by hand tonight. If I don't, she won't eat. She is fidgeting with her clothes, having conversations with "the committee", and making many trips to the bathroom. She is shouting, "I don't WANT to eat any more!" "Stop it!" "You're not being very nice!" She is rejecting the food so wholeheartedly that the spaghetti on her lap and the floor is thrilling the heck out of the family dog! HA! The group-home caregivers tell me this is what happens every single day.

Now I am hearing, "I can't swallow I tell you." There is nothing in her mouth. Stages 6 and 7 ... the final stages.

I wonder to myself, how many symptoms in all the stages of this disease is God going to allow Lizzie to experience? At what point in time does a family member such as myself say, "I can't watch this any more" and simply become absent from the week to week progression of it all?

THIS IS MY TWIN SISTER WHOM I HAVE TAKEN CARE OF FOR ALMOST 61 YEARS ... how can I be thinking such thoughts?

I am scared.


  1. This is Joyce. (I am Sarah's mom) You are thinking like an amazing, caring, yet heatbroken woman who has dedicated her life to her sister. I can't begin to know how you are feeling but I can imagine that scared does not begin to describe your feelings. Feelings that would be so normal for anyone in your situation. I think of you often as you and Lizzie continue down this dark and lonely road. Cyber hugs and squeezes coming to you this evening.

  2. I wish I had comforting words for you. I am just so sad for you and Lizzie, hoping for...I don't know...*something* to help you both out. Neither my husband or I have siblings we're close to, and Samantha doesn't have any siblings at all. Lizzie has been SO fortunate to have you. (((hugs)))

  3. Joyce ... I just LUV what I read about Sarah, and think one day I will meet you both! Your hugs and squeezes are felt as I deal with the guilt of it all!

    Becca ... I guess the "something: will simply have to be prayer. I have been told that every day could be different, and when Lizzie left the house today ... it WAS a different day. I saw her happy and dancing down the walkway. Thanks for the hugs!