Hospitals and other Thoughts, August 17, 2010

For the fifth day now, I am sitting in my mother's hospital room at Medical City Hospital in Dallas.  After a really massive stroke sometime Thursday night, my sister found her Friday afternoon and she was brought here.

Roller coaster ride--first it looked like she'd recover, then her heart headed back to the state that caused the stroke to begin with and they insisted that she be moved to the cardiology floor.  On the neurology floor, she was getting good attention for her neurological issues.  On the cardiology floor, we spent a long weekend trying to get some information and seeing her physical functioning issues being ignored.

Yesterday, we were sure she had bought the farm when a CT scan showed further bleeding into her brain and she started having seizures.  I called my brother in California, told him what was going on and asked him to come and be here so we could make some very hard decisions together.

And then, last night, she woke up.  And I do mean woke up.  She, my sister and I talked for a good hour together.  She was coherent, alert and aware of what had happened.  She agreed to a feeding tube through her nose ("wow, that sounds really uncomfortable!" was her initial response to it) in order to get some nutrition into her since she still couldn't pass the "swallow test."  She agreed that she'll go to rehab and work hard and get back on her feet.  Her speech was clear--she didn't even sound as though she had experienced the stoke. A sense of humor that had never been seen before just popped up and she cracked some jokes. Magical, mysterious time.

And now, Tuesday morning--I'm here with her, and she keeps opening her eyes and doesn't seem to know that I am here.  

I am so torn.  None of us want for ourselves what she is experiencing.  I keep writing my sons with updates and reminding them, "Just put me on the ice flow" when I get to this point.  I had spent some time with them this summer wrestling with whether to purchase long-term care insurance for myself.  The cost is prohibitive.  By purchasing on it, I dramatically lower my already limited available funds just in case I need it later.  By not purchasing it, I gamble with the financial future of my children in case I need to be warehoused somewhere.  

We have made a mess of the dying process.  I just don't know how else to put it.  

I want my mother to have every chance to return to the life she has so enjoyed.  The life of her books, her radio, her friends, her family, her church, her solitude, her fun with the stock market, her crossword puzzles.  Yesterday, she asked for her crossword puzzle.  Jill brought the paper up, and we put on her glasses and set her up so she could work on it.  She said, "I don't have my red pen!"  She always does them in red pen.  Fortunately, the really kind nurse (and we have had all male nurses since we've been here--which I find fascinating), found her one.  Of course, she couldn't do it, although she did manage to write the date down as she is trying to reorient herself.  I showed that to the occupational therapist today when she came in and found mother so out of it again.  "Look," I said.  "She wrote the date down.  Don't write her off--her brain is still there."  I don't think I convinced her but she agreed to come later in the day when there seem to be more chance of Mother being more alert.

Yes, this is what I want for her.  But as I see her getting more and more sucked into the medicalized world of the end of life process, I wonder what I am doing. 

I also wonder if she is being starved to death. She has had nothing but sugar water for five days now and she had eaten very little for a couple of days before the stroke because she had a stomach upset.  A phone call I just received from an old friend whose wife had suffered a devastating stroke pushed this question into high gear.  He just insisted that a central line be put in for nutrition several days after her stoke when she too, was going into this terrible lethargy.  Within two hours, she perked up and her recovery, long and complicated, actually began.  I think it is time for me to do something about this.

Just after I wrote these words, a physical therapist came in wanting to get her up.  We can't wake her.  I told him what I wanted and he said he'd try to get the ball rolling.  

If you read this, please pray for us.