Thursday, February 21, 2013

Too Tired to Fulfill Her Advance Health Care Directive for the Garden


Mom Tuesday, June 14, 2011 My (Tina’s) report

Dear Suzy and Kathy,
                I had an all-day outing at Point Reyes yesterday, so I went to see Mom later than usual.  I’d already asked her on Sunday about coming later when she told me she might feel more like going out into the garden in the evening.  So I got there after 5:00 and stayed there about an hour, but she didn’t feel like going out into the garden.  She said she was too tired.
                When I got to Aegis, she was sitting with three very silent people:  Franz and two very old men I’ve never heard speak, though one did growl last Saturday.  Mom seemed very tired but lucid.  She greeted me sweetly.  She didn’t seem crazy about their rice-chicken dinner or the strawberry dessert, which she asked about trading in for the chocolate.  I offered to go get her some chocolate, but she said not to.  I think she felt like only a short, uncomplicated visit, and she hardly felt like moving.  There was really not much to keep her at the table.  After eating, Franz started scraping water from one glass to another and then he started scraping food from a plate to a bowl—maybe going through motions of what he did when he helped put food into containers at home?  Mother offered to help him.
            When I said one of the five German phrases that I know, “Danke schön,” he said “Bitte schön,” but not with much enthusiasm.  Then someone named Michael helped him up and away from the table.  Mom said she was too tired to get up, but she did. 
                Her room did not smell good, but it helped to get her to take off her totally soaked first (closest to her) pad.  The two she’d put on after it were dry.  I’m wondering whether she keeps adding pads without taking off the one that  is totally soaked.  Also, if it’s totally soaked, that indicates something about her peeing instead of going to the bathroom.  She seemed so tired and kind of confused about just what she should do.  I helped her, and she was receptive to my help.
                She really likes the bed pillow/arm chair pillow that you brought her, Suzy.  She refers to it as “the bear.”  I forgot to tell you that on Sunday, at one point—maybe as a joke—she started to feed some of a cookie to the fuzzy bear pillow.
                Kay was still in the dining room when Mom and I first got settled into their room.  I showed Mom the pictures of her and Betty Zulch, whom she correctly identified.  She also recognized our Grandmother Martin, saying “I believe that’s Elmore’s mother.”  (But she didn’t call her Snooky.)  She said she wanted an album to put the pictures in.
                Then we looked at The Lazlo Letters, which she’d inscribed to someone back in 1979.  There were pictures of someone’s 40th birthday party, and Kathy, you look about 18 years old!  
                Then we read a Jon Carroll column on “gleaning,” that act of going through someone else’s garbage before the Recology collectors pick it up.  
            Mom said, “Whatever Jon Carroll hangs out there, I always get excited.”  There was a word we didn’t know, sadhu, so she asked me to look it up in her dictionary.  I commented that the dictionary was so heavy that it felt like a brick, and then I said, “I have no idea what that means.  I’ve never even seen the word before.”  Mom said, “Brick?”  I said, “No.  Sadhu.  I know what brick means!”  And I laughed.  She smiled and said, “Well, we hear such alarming things about the education system these days.”
                Kay came in, and Mom, without leaving her bed, was very solicitous.  “How are you feeling?  How was your dinner?  What did you have.  You can sit down right over there.”  Kay said she had a stomachache, but she sat down and was pleasant if a bit quiet.  Mom said she was looking forward to seeing Jonathan.  At one point she said, “I’ll have to go home and practice.”  I reminded her that Kathy had brought by some sheet music, and she said, “Good.” 
                After about an hour, I asked Mom whether she’d like me to let her rest and then come back on Thursday.  She said almost apologetically, “You’re always so sweet, but it might be better.  I’m really tired.”
                I completely understand Mom’s being too tired to go out into the garden.  But I’m wondering why even when she has more energy , she doesn’t want to go out.  Of course, that was true even on Poshard Street.  She always wanted to stay close to the bathroom and didn’t seem enthusiastic about walking outdoors even into the back yard or onto the deck.  At least that’s how I remember it.  In her Advance Health Care Directive (dated May 11, 2005) she said that if she were ever in a care facility, she would like to spend a lot of time outdoors.  She wrote “…I wish to live in the least restrictive and most home-like setting deemed appropriate by my agent.  (Kathy)  …I further request that I live as near as possible to my primary residence …I wish to return home as soon as reasonably possible after any hospitalization or transfer to convalescent care.  If my agent determines that I am not longer able to live in my home, I wish …as much privacy and autonomy as possible…I wish to spend significant time outdoors.  If I can no longer travel, I wish my agent to arrange for trips to local parks and other areas where I may be outdoors in a natural setting.”
                Of course, I understand that we shouldn’t force her to honor her Advanced Health Care Directive!  I’ll see her earlier tomorrow—after a 10:00 visit to a SF friend who has several kinds of cancer.  

                Love,
                Tina

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