Friday, December 09, 2016

Some Things That Happened.

As Dementia rooted deeper into the mommy she became more and more afraid. Rarely a day went by when she didn't talk about being scared. She didn't know why but she was so scared sometimes that she'd shake.
Some of the care givers at the assisted living place where she lived would help her to the bathroom and leave. More than once she called me from the bathroom upset because she was alone. Once I timed the call and it was more that 15 minutes before anyone came to help her. I later learned that this is seen as an acceptable amount of time (by the state or the facility or who knows who makes this shit up) and care givers are encouraged to leave people on the toilet and go help someone else. This is a perversion of the if you have time to lean you have time to clean rule in restaurants, keeping employees running. Mom took to screaming for help at the top of her lungs. I was told she was so loud her neighbors would call for help for her. One night a resident walked in and scolded Mom telling her she was bothering people. I never found out who did that. Mom was mortified. She called me crying.
There seemed like an easy fix to me. Don't leave her in the bathroom alone. Right? Part of why she was afraid may have been abstract but part of it was a fear of falling and a need for support. But the very expensive facility couldn't do that.
For a time I was there every day except Wednesday. She had Mandy in the morning and music therapy in the afternoon so I stayed home and checked in by phone. On other days I went after swimming and stayed until about 5. One afternoon as I walked out the door I heard her talking to herself saying, "You're OK Lucille. Just relax. You're OK."
Mandy stayed later in the morning. I started staying until she was in bed.  We made sure there was only a few hours a week when she was alone.
She had stopped coming to Oak Street on the weekends so I spent the weekends there. She was always happiest when I was there over night and in some ways so was I. The only time I wasn't worried was when Mandy was there. I never trusted the facility to truly deeply care for her. There were mostly wonderful loving care givers but they had to take care of too many people.
But she was scared even when we were right there with her. I would hold her hand and sing her a song. But she was afraid.
The other night I had a dream in which I had left her at a friend's house. It was really dark and I assumed the friend would walk her home. But they hadn't. They said something about everyone needing to "go through things like that." I found her and she was OK but she seemed small and afraid.
I've been thinking about the concept of individuation. A simple definition is the process by which a person becomes identified as them self and not as a part of a family, a religion, a country. You are part of those things but not defined by them. It's a big and subtle concept involving the integration of the unconscious and the conscious but I was thinking about how much of my awareness has been occupied by the mommy for the last few years. I still look at the clock at 8AM and feel calmer because Mandy is with her. I still feel nervous toward the end of a swim because I need to get to her. I think I always thought of individuation as a hard line defining the self. But I hate that word - boundaries. It feels so false. Our boundaries are semi permeable. We overlap. Of course we do.  
Mom was 90. I'm 63. She passed. I feel like there's a proportional amount of sorrow that I feel relative to those facts. Adding our particular story there is (maybe) a bit more than average. But there is a hurt in me because of how hard I had to fight to make sure she was cared for and how hard I had to work to do what should have been the job of the facilities. It's going to trouble me forever. It has changed me.
It occurs to me that I'm going to need to get used to not being aware of her. That's true in an obvious way but it's also very structural. I no longer need to cling so desperately to my phone because she isn't going to call. She isn't sitting in the bathroom, scared anymore.
So I read and cry and make polenta and swim and read some more and cry some more.



Cheryl Czekala said...

I'm so glad you wrote this, Tish. Sending warm thoughts. You've been the best daughter it's possible to be.

Sudeaux Lux said...

Oh,my Tish. I just saw. I'm so sorry.