The Horrible Days

This morning as I reflected on my last post, I realized that I didn’t really explain why I used the description “horrible days” for some of Tammy’s days. The word “bad” just wasn’t bad enough to describe her life on those days. Maybe “horrendous” would be a more appropriate description? I’m truly at a loss for a word that fits the anguish, suffering and misery she’s experiencing.

On the “horrible days” Tammy begs and pleads for help. Many times I’ll walk in her room and hear her putting all the effort she can to talk over her trach calling out, “Help!” That cry for help tears at my heart and overwhelms me with a sense of sadness for her.

”“What do you need help with?” I’ll ask.

“Help me.”

“What do you need me to do?” The response is usually one of two answers. Sometimes she says, “Help me get out of here.” And other times she asks for me or Vicki to take “this off of me” meaning the machines she is hooked up to.

I have spent an entire hour listening to Tammy beg for help, asking for me and any nurses that are in the room to get her out of there. When she’s like that, you can’t carry on a conversation or pray with her because she constantly interrupts with “Help” and the whole “Help you what?” begins all over again. There is no calming her or stopping her. She reminds me of a two year old that can’t understand why you won’t grant her request. The difference is that you tell a two year old “No” because it’s what is best for them. You have to tell her “No” because it’s not possible to do what she’s asking. Oh, the helplessness of the situation!

Many times Tammy has said, “I’m so miserable.” I cannot even begin to imagine how miserable she is and what she is going through. The other day she kept asking me and Vicki to remove her shoes. We would pretend to take off the nonexistent shoes and she would ask us again to remove her shoes. Several times we told her we had removed them, lifting her bare feet so she could see there were no shoes. That would calm her for a minute and then she would plead again to have her shoes removed.

Tammy asks for help getting out of bed, help sitting up, and for help walking. Vicki and I have heard her say, “Put my legs over the side of the bed. Put my feet on the floor. Help me stand up.” In her mind, if we’ll do these simple tasks for her she will get up and walk out of the hospital. On several occasions she has said to me, “I can walk.” with sincere belief as she gazes into my eyes. If only the body could follow where the mind wills it to go.

I can’t tell you how many times I’ve seen a look of deep sadness as she mouths the words, “I’ve lost my voice.” Sometimes I can read her lips and other times, no matter how hard I try, I can’t figure out what she’s trying to say. What impresses me the most is she never loses patience with me when I can’t figure out what she’s trying to say.

The other day Tammy told me she had lost her arms and legs. “No, they’re right here.” I told her and lifted them so she could see them.

“They cut them off.” was the reply.

“Tam, no one has cut them off, they’re here.”

“I know, but they cut them off.” In her mind “they” had cut them off and there was no convincing her otherwise.

When I leave on days such as these, I feel a sense of loss and sadness. This is her life and I can’t make it better for her. I can’t help but wonder what good my visits are to her when she’s like this? Her incessant begging and pleading are for things that are outside of the realm of reality for her. I’m not sure I’m offering her any comfort or solitude when I have to say “No” to everything she asks me to do. But then again, maybe her not being alone in her room when she’s the most distressed and miserable, is a way I can help her.

I can honestly say, the good times have more than made up for the bad ones and my life has been enriched and transformed by knowing Tammy. I will continue to be here for her, with my love, support and prayers.