Monday, January 11, 2010

On being the caregiver

This is me in the unlikely role of caregiver. Well, not unlikely, but more unfamiliar. I am used to being the patient in the hospital waiting for visitors. Yesterday I was trying to count up the number of hospitalizations for me (1981, 1986, 1997, 2005 (twice), and 2007 (twice)) - and I could be wrong here but I think I have it right. 1981 for thyroidectomy, 1986 and 1997 for ovarian cysts, 2005 for abdominal infection and hysterectomy and 2007 for low blood counts during chemo and axillary node dissection. There may be more but its early and I'm too lazy to get up and look at my medical history.

As the patient you sit there, sometimes alert and bored and sometimes dozing and bored, waiting for people to show up, a better book to read, or something better to come on TV. As you start to feel better, boredom leads to crankiness and inner evil twin appearing regularly. Then every time you fall asleep someone shows up to take blood, check your vitals, or make your breathe into the stupid little lung clearing thing that is just plain annoying but slightly better than nasal oxygen tubes. You also get to whine about hospital food - its pretty blah but edible in general, but never quite hot enough by the time it arrives from the kitchen many floors below.

As a caregiver, you try to fit in as many visits and bring amusing things - like the daily newspaper - and ask questions about how the patient is feeling. You try to see if there is anything you can do for the patient but most if it needs to be left for the professionals. You get to do things like take them for walks, rearrange the stuff in their room so they can reach what they want, and ask questions.

This is the weird part. I am not used to this. I am used to being the one stuck in the hospital bed, not feeling so great. But it turns out this was a learning experience. I know I can nag about using the stupid little lung clearing thingie. I know walks are important and make sure he gets them - once we got clearance from the nurses. I know I can't help him get in and out of bed at this point - a nurse is required to make sure the IV, drain, and catheter don't pull or get squished and end up on the right side of the bed. I also know you aren't supposed to grit your teeth through pain and bear it. I tell the nurses when this happens so they can help.

I also try to fit in as many visits as I can. Boredom turns patients into really crabby patients. I am working part time so I am trying to fit in two visits a day. Yesterday we played scrabble and tried to play gin rummy but couldn't remember all the rules (I'll print them out today and bring them in). We also fit in four walks which might have been a few too many. Today I think I will visit late morning and then early evening. We will go for walks and play more cards. I'll bring the newspaper as well. Today is a big step to try some jello this morning and maybe some toast this afternoon. Then he can start whining about hospital food as well.

But that is the limit to what I can do. I don't like seeing him in pain or uncomfortable. I have to leave that to the nurses to make sure he is doing as well as he can. Its just weird. I'm the professional patient. He shouldn't be.


KatieB said...

Caroline! your journey sounds very courageous.
I hope you don't mind but I listed you on the website for Pittsburgh Caregiver Support Network. I think what you are writing is worth sharing; and of course, what you are doing is worthy of admiration. Good luck!

Gina said...

Thanks Caroline for the recent post in regards to a cancer center and a community hospital. I never thought of the difference and advancement in care. I am a young breast cancer survivor and the hospital I had my treatment didn't have a cancer program or support group. Because of this lack of resources, I started an on-line breast cancer resource blog to help others in my community. Great blog and thanks for sharing.

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