Sunday, February 15, 2009

The nitty gritty

I have a friend who has (apparently) been inspired by my caregiving endeavors and is considering pursuing it as a supplemental income.

Now, this post is NOT to say that she should not pursue it. It's just to give an honest overview of what it's like.

This post is also not to say that I don't love my job. I do. I love Dorothy and I love being here for her and being that reliable, capable person that she needs. I have become totally attached to her and I wouldn't trade it. (I had a dream last night that I was a caregiver for somebody else and they died and I woke up sobbing. It was horrible.)

As far as I can tell, caregiving is a lot like having a small child. Except that small children gradually learn to do things for themselves and become more independent. Dorothy gradually loses the ability to do things for herself and becomes more dependent.

(It's hard to be honest about the nitty gritty because I've come to like Dorothy so much that I don't mind doing most of the things I do. It's also hard because I want to protect her privacy and dignity.)

I go to bed late and I get up at 5:30. I often get up at least once in the night, sometimes to adjust pillows or turn her onto her side, sometimes to help with getting to the bathroom. Sometimes I help her actually get to the bathroom, sometimes I change her in her bed or wheelchair (depending on the time of day). I organize and help keep a log of all the food she takes by tube and all the food she eats by mouth. I organize and help keep a log of all the medications she takes. I keep track of those medications and make sure they're refilled when they need to be (and fill her pill box every week). I keep all the feeding tube supplies (which is a lot) organized and stocked. I help her shower on the weekends (Natalie - her daytime caregiver - does it during the week). I blow dry and curl her hair for her and help her get dressed. I run her feeding tube twice a day (more on the weekends) and fix her meals for her. I translate for her on the phone sometimes when her friends/family can't understand her. I keep the dog fed, the laundry done, the house tidy and the dishes clean. I do the little things like putting toothpaste on her toothbrush, making sure she has her "collection" before bed (TV remote, call bell, phone, book, etc.) and that her breathing mask is on. I drive her to appointments and errands and church. I do the grocery shopping. I know the little tricks like how to "fix" her orange juice, how to arrange specific pillows at night for maximum comfortableness, and how to read her mind. (She laughs because she'll say, "I want..." and then hesitate and I can fill in the blanks more often than not.)

I watch her cry. I watch her choke (and it kills me because honestly there is nothing I can do to help her except offer her water). I think about her while I'm at work and I wonder if her rides show up on time or if her small wishes for the day get completed. I watch her struggle to communicate with people who have a hard time understanding her.

I laugh with her. I have great conversations with her. I relax with her and watch American Idol with her and laugh some more with her. I listen to Steve tell me how much he loves her and how he really likes coming over here and is so glad that I took this job and that he gets to have the chance to get to know her.

I worry about what it will be like when she's gone. I can't place what she is to me... not a grandma, not an aunt... just a friend. A really good friend. I hope you all get the chance to meet her.

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