Friday, May 20, 2016

The Backstory

In 2008 my mother had a small stroke (TIA). The related tests and diagnosis revealed that her osteoporosis was severe and that she had Parkinson's. In 2012 she sold her house and moved into mine. It was me, my husband Stephen, and my mom. Oh, and my young adult son, Jason, moved back home with his girlfriend, Brittanie. They lived in the basement mostly. My youngest son, Eric, then 18, had just graduated from high school. He would move into the dorm in the fall, but that summer and during school breaks he was home too. There was a long stretch when another of the boys (I have six total, that's a whole 'nother blog) moved back in when Eric was in the dorm. Later Jason and Brittanie moved out and Eric moved back in (he's still here). Got it?

Over the next few years Mom's Parkinson's got worse. The most distressing part was that she started having cognitive issues. That's my gentle way of saying dementia. Last summer I really began to worry about what would happen when I went back to school in the fall (I'm a college professor. Among other things, I teach Bioethics). I wasn't sure that Mom would be safe at home alone.

In August of last year she fell in the kitchen and broke her right hip. I called 911. She had surgery, spent four days in the hospital and then was transferred to a rehab and long term care hospital. Many people believe that anesthesia is very bad for dementia. It is difficult to know for sure. There is the bodily injury, the surgery, and of course the sudden and dramatic removal of everything familiar. It seems to me that it is at least possible that things like surgery reveal dementia.

In any case, it took six weeks for Mom to get strong enough to come home. You know all those wonderful commercials for home health care workers? They are not real. In reality, at least here, it turns out that the agencies are under staffed. The web site may say that 24/7 help is only a phone call away, but the reality is that they don't pay enough to attract and keep enough workers. In the commercials the home health aides are playing cards and cooking meals and everyone is happy. In reality the home health aide is bored and trying to hard to make your mother have fun. Meanwhile your mother has dementia and does not entirely understand why this person is hanging around all the time. It's funny when your mother tells you in the evening, "That girl never did go to work. She just spent all day here!" It is less funny when "that girl" walks out and leaves your mother alone.

It turned out that Eric was the perfect home health worker.  My mother thought it was perfectly reasonable and even convenient that her grandson was between jobs and therefore hanging out with her all day. Eric would play video games on his computer and get up whenever Mom wanted something. For about a week I thought we had a solution that would work.

Then Mom decided to take some dishes back to the kitchen. She forgot she needed the walker and just got up. She took two steps, fell, and broke the other hip.

So it was back to surgery and to the rehab/long term care hospital. She had been home for 16 days.

Because of the nature of the break she was not permitted to put weight on her left leg for six weeks. She was supposed to be able to stand with a walker and even walk with it. The trouble was that unless she had a therapist cuing her at every moment, she ended up putting weight on the wrong leg. Then six weeks turned into eight weeks. She got more resistant to doing physical therapy. It wasn't helping. She explained to me one day that she was more qualified than nearly all the people who worked at that hospital (Mom was a nurse for 40 years). The people in therapy were trying to get her to work for them but she was retired and she did not work for free. "Besides, if I do they will just get dependent on me."  We tried giving her incentives to participate in therapy, but she wasn't having it.

Mom was moved to the long-term care part of the same hospital. We told her that the move to the new room did not mean anything. The plan was still the same. She would come home as soon as she could manage with just Eric for assistance. That meant she would have to be able to walk with the walker and be able to manage her toileting without assistance. (She very much objects to any male person helping her with bathing or toileting). When Eric had an opportunity to apply to a job at the Humane Society I told him that he should of course take it. It was unlikely that Mom was going to be coming home.

So now it is May. Mom cannot stand up without assistance. She cannot remember that she cannot stand up so when she wants to get up she does -- and ends up on her elbows and knees in front of her chair. Her care plan had been that she had to be in "line of sight" at all times. A couple of weeks ago they have changed it. She now always has someone right with her. Sometimes that means she is with the nurse on duty, but much of the day and night she has a one-on-one aide who sits with her. (Mom's body rhythms are all out of whack. When she really asleep she is alone but someone looks in on her at least every 15 minutes. If she is restless, someone stays.

I have stories I will share. Some are funny. Some are not. On one hand I am a daughter coping with her mother dying in slow motion. On the other hand I am a philosopher, thinking about the nature of language, personhood, and the ethics of health care.

I have people who will listen to me, but sometimes I wear them out. Sometimes it makes them uncomfortable that I switch from being the emotionally involved daughter to the abstract philosopher and back again in the same conversation. I get that. But I need a place to do that.

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Blogs can be a good way to develop relationships with people who have similar experiences. Feel free to share here. Please know that I am not seeking sympathy and I will not tolerate judgmental trolls. If I think what you say is unhelpful to me or my readers I will delete it. If that makes you happy, go start your own damn blog.