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It’s a little weird trying to live a normal life during the midst of a life changing event. Or maybe I should say it’s so hard for me to try to live a normal life while my mother is dying.It’s always on the back of my mind and if it’s not about her condition, her life, memories of her and anecdotes, it’s about little fears and resolutions I am facing and making on how I want to die someday. 

Yesterday Mr. Pete and I got in a nice two mile walk before breakfast. I came home and went over all of Sam’s school work that needs to be done before he leaves on Friday for the Franciscan University Youth Conference. Then since Noah was sick and Gabe is now doing his teenage 15-hours-of-sleep-per-day thing, I worked with Isadora on her reading and math.

After lunch I drove Sam over to church so he could practice on the pipe organ for a while and when I picked him up, we drove over to mom’s.

I don’t know what to think about about this nursing home. Some of the people are friendly enough, but some of the aids and nurses are downright surly. Last week they put a sign on the door that anyone visiting had to see the nurse first. So I dutifully found the nurse who was busy juggling about four things at once. I waited about five minutes before I approached her, and then when I did she pretty much snarled at me to just not touch my mother’s open decubitus wound – something that I had no intention of doing anyway! I resented being in that position. I didn’t want to bother her, but I also didn’t want to disobey the sign in case there was something really important I should know before entering the room. And I got penalized for following the rules on that one.

Also for the second time, I found my mother in medical distress and had to bring it to their attention. I find this to be very unsettling. Yesterday she was having a hard time breathing and had a nasty productive cough. When I tracked down the nurse she found her oxygen saturation was only 93% (on room air it’s supposed to be 96%)and so she got an order to start her on oxygen. By the time my sister visited mom had her oxygen and was breathing easier but was still weak.

It’s just really hard to see her like this. I had so hoped that after her surgery back in April Mom would feel better, get her appetite back, get stronger with therapy and then be able to move into assisted living and have a much happier life at least for a while. But it totally hasn’t gone that way. She has gotten weaker, refused to participate in therapy and is this close to losing her Medicare benefit for skilled nursing for lack of improvement. What’s more I think she wants hospice care because her real goal now isn’t to get to assisted living, but to have someone take care of her all the time and to take care of her needs immediately. She is giving up.

On another note, I got into some trouble a few years back for commenting on my reservations to deliberately have only one child.  I wrote:

And on a personal note, my mother is 80, she has cancer. I know that she will probably be gone in the next five to ten years. I am so grateful that I will have my only sister to be with me during that time, to laugh at the memories and to cry in grief. She has been my companion since I was a toddler, the only one who truly understands my entire life experience. She is also the reason I wanted siblings for my children.

And so it is coming to pass. I cannot imagine going through this without my sister’s input, clarity, love and support. What a lonely burden these end of life issues must be for an only child. It is a gift to have someone with shared childhood and adolescent experiences and memories to travel this path with. I definitely add that to the long list of good things my mom accomplished in her life.

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