Tuesday, June 21, 2016

Conversations with Dementia 1

Conversation with Mom during lunch, sometime in the fall 2015

Mom - I still don't get it
Me - Don't get what?
Mom - That joke you told
Me - I told a joke?
Mom, shaking her head sadly - You're slipping.

Saturday, June 11, 2016

The beginning

During spring break 2013 she went for a walk. That was normal, she had always walked every day. A police officer came by our house though and said that she had fallen and was a few blocks away. Someone called an ambulance, but she was refusing to go with them.  Stephen went to pick her up and I got her purse and insurance information. She had a broken shoulder and nose. I was just relieved it had happened during break so I was home. She was funny in the ER. They asked her what happened and she told them that she had gone walking "for her health." We joked about how she had to give up roller blades. I noticed though that she was more dependent upon me to make decisions. I thought it was all about her having trouble hearing. Maybe not though.

By the next spring it was clear that she was having "cognitive" issues. It started with little things. The first thing was that her Kindle stopped working. Of course it wasn't really not working. She would complain that it the page button wouldn't work. I would try not to tease her when I pointed out that that happened when it was turned off. She must have dozed off. She laughed. And then it happened again. And again.

In the summer of 2014 she got really obsessive about her meds. She was concerned that she was taking too much medication. She didn't think the labeling on the bottles was accurate. I called the doctor's office multiple times to confirm that the were. I started setting up her pill boxes for her so she would not have to worry so much. Then one morning she wasn't feeling well and it turned out she had taken a whole weeks worth. We were in the ER again. Fortunately none of her pills were very dangerous and it was just a matter of managing the side effects. She was clearly confused in the ER, but it wasn't clear how much of that was a result of the medication.

The school year 14-15 was tough. I called home more often. I wasn't sure about leaving her alone, but I did not have a clear idea of what to do as an alternative. She didn't seem inclined to go anywhere. She mostly just sat in the living room falling asleep over her Kindle.

In the summer of 2015 things were getting bad. The biggest issue was time. She would get tired at 7pm and go to bed. She would wake up an hour or so later and be convinced that it was morning. We are fairly north (Idaho) and right at edge of a time zone, and so at 8:30pm in the summer it is bright. It did not look like evening. Stephen bought a digital clock and explained to Mom that it was set every day by a satellite and she could trust it to be accurate. She would go look at it sometimes and then ask if the satellite had come by yet today.

Sometimes she would get worried because my sister needed to be picked up from school and she couldn't go because she couldn't drive anymore. It was odd. She understood that she was living with us and retired and no longer able to drive. She also thought my sister was 15 and needed to be picked up.

In August of 2015 she fell in the kitchen and broke her hip. She traveled to the hospital in an ambulance, spent three days there and then went to the rehab hospital. Fortunately both facilities were within half a mile of my house, so I was able to be with her often.

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.

This blog is not about Peter Singer

Did you get here because you were searching Peter Singer? Sorry, but there is nothing to see here.

I will say this though. Peter Singer's standards for ethical behavior are not just controversial but demanding. Singer himself admits that he falls short. He thinks that people should give very large amounts of money to charity. He confesses that he only manages to give away 20%. He believes that we should use our resources to do the most good.  He has been criticized for providing his mother, who had Alzheimer's, with care even though the money arguably could have done more good being spent in a different way. In a New Yorker article he was asked about this:
We were sitting in his living room one day, and the trolley traffic was noisy on the street outside his window. Singer has spent his career trying to lay down rules for human behavior which are divorced from emotion and intuition. His is a world that makes no provision for private aides to look after addled, dying old women. Yet he can't help himself. "I think this has made me see how the issues of someone with these kinds of problems are really very difficult,'' he said quietly. "Perhaps it is more difficult than I thought before, because it is different when it's your mother." (http://www.michaelspecter.com/1999/09/the-dangerous-philosopher/)
Some people think this makes Singer a hypocrite. I think it it makes him a human.

Now, I don't agree with Singer about a lot of things. But I am with him on this. We are embroiled in a debate about health care in America. Should we move to a single payer plan? Is it possible to move to such a plan when most providers and insurers in the US are for-profit?  Should we be working harder on extending life for a few or making life better for everyone?  Should Medicaid dollars be spent on an expensive cancer treatment that will likely only extend life for 6 months, or on getting many more people treatment for their diabetes? Whatever we think about these and other difficult decisions, I think we all share Singer's experience when we have to act on behalf of the ones we love.  It is more difficult than we imagined. It is different when it's your mother.