Friday, January 11, 2013

Mom in the Gutenberg Concentration Camp



                “Do unto mothers as you would have others do unto you,” I mused as I shared the agony with Kathy, Suzy, and Mom’s friend Nan that Mom wasn’t happy at a place we’d choose for ourselves in an Advance Health Care Directive. 
                She wasn’t in an agitated state.  She was depressed and solemn.
               I thought about the Broadway musical Next to Normal about a bipolar mother and the attempt to get her medicine just right.  Each combination of pills caused different  side effects  until she takes a concoction that causes her to say, “I don’t feel like myself.  I don’t feel anything at all” and the doctor notes with relief, “Patient stable.”
                There were days when Mom seemed quite sane, but that didn’t mean happy.  That didn’t mean Mom.
                When I arrived on April 7, Mom wasn’t in the group room, but she was at the door of her room with Kay, and they seemed to be having a really nice exchange.   Mother looked beautiful in her pink pullover, with her white, white hair.   But as soon as Kay got on her way, Mom walked to her bed and lay back on the pillow (a very pretty pillow case that Kathy and Suzy had chosen)  and said, “Kay means well, but she is really deaf and like a lot of people here, she is wavering between sane and not.”
                I gave her the card I’d brought for her to give Kay, but she wanted me to write it.
                “You wrote the one to Ada,” I reminded her.
                “You can write this one,” she said,
                But Ada was still on my mind, and instead of Kay, I wrote,  “Happy Birthday, Ada.”
                “Who’s Ada?”  Mom asked.
                “Uh oh, “ I said.  “Not Kay!”
                I made really attractive little designs out of the Ada to obliterate that error and put a similar design on the other side of Happy Birthday and then wrote Kay at the bottom. 
                 “Well, you sure made a mess out of that, “ Mom said.  “You sign it so she doesn’t think I did it.” 
 She put her head back down on the pillow, and when I said, “Yes, you need to rest,” she said, “No, I need to die.”
I just said, “I prefer the world with you in it,” but I didn’t tell her she didn’t need to die.
 “I don’t think I’ll ever again stay at a place where I don’t know the people for more than, say, twelve hours.  I’ve never felt closer to the people in the Gutenberg Concentration Camp than I do here.”
“Was Gutenberg a concentration camp?” I asked, stupidly, as if that really mattered.
“Maybe not, but it sounds German,” Mom said.  “This is just a holocaust.”
“I’m so sorry you feel that way because we all love you so much and this looks like such a pretty place, a place I would like to be when I get older. “
 She said, “I thought it would be so much fun, but it really isn’t.
  She said something about the “bellicose” people, and then she wanted to explain what she meant by bellicose. 
“Bellicose as in blare.” 
 She said she just wanted to lie there  “to make them feel sorry for me.  They killed me with their verbosity.” 
She also asked me whether I’d help her pack. 
Then Ada came in and told us that she was just having an awful time.  People were treating her as if they didn’t like her at all—as if she’d done something wrong.  Mother then sat up in bed and commiserating, said  that they must really feel insecure, so the slightest thing made them feel threatened and they acted not very  nice. 
Ada then recited her “The peace of God is my one goal” affirmation. 
The first time around, when she paused and asked Mom whether she wanted her to continue, Mom said, “I don’t think so.”  But then Mom relented and even asked me to write down the words.             “Don’t tell Kathy what I said about this place because she’ll  think I was complaining, but why doesn’t Kathy want me at home?”
“Mom, you asked us to find you a place because you didn’t feel safe at home,” I reminded her.  “You were running away.  You were throwing out your food.  You were saying Kathy was trying to kill you.”
    “Oh, that thing about circumventing.  About going to the neighbors.”
                Some birds came along to eat the bird seeds in the bird feeder.  Either the birds or a chipmunk shook the birdfeeder so that the seeds scattered on the ground.  I thought that was a wonderful sight, and Mom got into for a few seconds, saying, “We should take pictures and send them to each of the grandchildren.”
                Then she turned to Ada.
                 “I have to restructure my whole life,” Mom said.
                “Step back and let God lead the way,”  Ada said.
                Then she once again recited the piece about the peace of God.
                Mom said, “I could feel good about being here if I knew for sure that you would be here.”
                Ada said, “I have no plans to leave, but it’s  in God’s hands.”
                  Mother asked about sharing a room with her. 
                “Would you give it a try?” 
                Ada said that she would really have to think about it because it would be a big change. 
                “Do you have a roommate?” I asked her, and she said, “I have an apartment,” and Mom said, “Oh, yes.  I forgot that.  That would be a big change for you.  There really wouldn’t be room.” 
                 I emphasized that they could still be together most of the day and that they were just down the hall from each other. 
                Ada said, “I need a hug,” and she hugged Mom, who hugged back. 
                 “I love you,” Ada told Mom, who said, “Thank you.”  But I think later she said she loved Ada too.
                Mom wanted to eat the cookies I made but today she didn’t want to eat the sandwich I brought in for her.
                They brought her lunch to her room after she turned down their invitation to come and eat with the others.  But she ate her soup.  Then she started obsessing about the BMs again and fearing that the food would create a problem.
                “At home I didn’t have to worry about that, but here I do.”
                I didn’t remind her that at home she worried about it all the time.
                She did take her meds, and at least she gave her obsession with her BMs as the reason not to eat rather than the certainty that they were trying to poison her.
                She didn’t remember that Nan had come the day before.  and she wasn’t sure whether Kathy had come but didn’t seem surprised when I said she’d come a couple of times in the past few days. 
                She had asked her friend Nan why Kathy hadn’t come to see her, and Nan also reminded her that Kathy had been there.
                We needed to leave something with her to help her remember our visits.  Proof we weren’t abandoning her.  Proof she wasn’t  at the Guttenberg Concentration Camp .

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