Waiting For Someone

It is a sad day for me.  We waited on Friday for the person who was suppose to come at 2:30.  My Mom was here because there was a therapist at our house for me.  My caregiver Stephanie, waited until 2:45 to leave for her other job.  The person we were waiting for never came, never called and never resonded to our two calls.  It wasn’t until Saturday morning at 11 that she called with her story.  It was a family drama and she didn’t have her cell phone to call us, blah, blah, blah…It may be true, but she left us in a bad place.  She has not come for many of her shifts lately,  so we let her go today.

I have a message for people like her.  If you really want to care for someone,  you need to have some responsibility.  Your actions are very hurtful.  I have let you into my life, sometimes because you are my only option.  You have seen my most private moments.  You have been with me when no one else is around.  My life depends on you.  If you choose to ignore me while I am sitting on the toilet, I can’t get up and leave.  If I am eating and I run out of a drink, I can’t even tell you because you haven’t taken the time to learn to communciate with me.  I depend on you to initiate the questions.  If my bath water is too hot, I can’t change the temperature.  I get so hot I get sick, and I wait until you decide to take me out.  I am so aware of scented body lotions, fabric softeners and hair products that stink, and I can’t get away from you, when you are brushing my teeth or changing my clothes or helping me stretch. 

Our relationship is dependent on you taking the lead.  You have not acted like a leader.  You left me hanging.  I would be in a desperate spot if my Mom wasn’t available, like it did when she and my step-dad were out in South Dakota.  It makes me very sad and anxious to be disrespected like that. 

Since I am able to communicate I share this on behalf of my silent friends and their families everywhere.  If you have drama, or compulsions, or addictions in your life, you bring them into my life.  You may be a wonderful person when you are on a good day, but when you aren’t, you are a huge grief to us. 

Where are the kind, stable, respectful people?  I can’t speak badly about most of the women I have in my life now. They are my allies. 

 I also cannot ignore how sad I feel today.



3 Responses so far »

  1. 1

    Anna Becker said,

    Your words are so powerful! I think this is wonderful for people to hear the truth. You
    are correct in asking the question where are these responsible people. So many people get caught up in their own lives that they forget what they are entitled to do. I am so sorry that you had to go through this! But what you said is so true and I love it when you speak the truth into other people’s lives. Thanks for being a light in my life! I love you Karly!

  2. 2

    Sandy said,

    I am sad for you tonight as I read this, but I am very glad you have the ability to be able to express it. I truly hope your blog reaches many many caregivers, maybe some of these words from you will help make others better caregivers thereby make life just a little bit better for all the people they care for.

  3. 3

    Sarah Adams said,

    One of the things I love about your blog is how you bring up issues that aren’t usually talked about but are so important. This time you have brought up one of my deepest fears – the vulnerability and utter dependence of any girl with Rett Syndrome and a carer who isn’t careful.
    There are no easy answers to this one but it is good to bring it out into the open. Thank you for doing so.

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