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Spokane, WA
This profile photo is my mom and me at the beach--she is 26 and I am about 18 months. LOVE the joy!! I am a mom of three and a teacher; being a teacher means I have to go back and cut the f-bombs. There were a few. Because Alzheimer's sucks badly. This blog, for nine years now--skipping a few while I was too cheap to buy my domain name-- helps me un-peel and process the endless layers of sad woven with weird and--impossibly--comedy.

Friday, May 6, 2011

Scrabble and the Mangy Mascot

Chris, Mom and I in 1975
         My little brother has been visiting from Los Angeles for the last few days to spend time with our mom. The first time we talked about him coming here to "say goodbye" was gut-wrenching. It was three weeks ago, when mom first started to lose her ability to monitor her own number ones and number twos, wasn't eating without assistance, etc. We actually thought she was doing the Alzheimer's rapid -body function-shutdown.  He couldn't leave work at that time (he co-hosts a TV show in LA and just couldn't. Anyway, so he's here now.) I had this conversation with him, it's worth mentioning, in the middle of McDonald's playland. My daughters had a little friend for a playdate, so they were screeching around on the play structure and I was sobbing; the maniacal, seemingly therapeutic consumption of french fries wasn't helping curb my grief. Got a text from a friend asking how I was doing; texted back "How soon can you get to McDonald's? Having a breakdown in playland." She arrived ten minutes later)
        Turns out our mom's not dying; not quickly, anyway, and in fact, may stay in this limbo for a while.
Her guardian called on our way to see her on Tuesday..she was asking for the Advanced Directive for her file..the bright green sheet that nurses, doctors and EMT's know as the "pulse form," or the "DNR."My brother didn't know what she was asking, so said "My God, let me visit her first."
       No extraordinary measures.
       Here are the ordinary measures: they feed her medication, help her get dressed, make sure she eats. (She gets to choose from a daily menu. Good thing she forgot she was vegetarian. Limited choices.) She is combative about showering, which I know from my failed attempts to force her. What with the decimation of Medicaid and Medicare, the addition of bathtubs, particularly in skilled nursing homes, doesn't seem likely.. so spot showers and sponge baths it is. She loves having her hair washed, and still has fabulous hair.
       We were scared my mom might not recognize Chris. He claims she didn't for the first few minutes until she heard his voice. She knew immediately that it was her funny son, and so she was trying so hard to be funny. It was really quite charming. She laughed hard and readily. (She doesn't brush her teeth anymore) and tried to make little jokes. She rallied the first day we were there. It was a short visit, and not as bad, but still kind of worse than he had planned. Because it was in person.
        When Alex and I had visited her on Easter, mom was using the bathroom by herself, but since being put on anti-anxiety meds to get her to stop pacing, and chill her out during dressing and undressing  (It reportedly took three nurses half an hour to get her pajamas on a few nights ago.) she's lost the interest or ability to go to the bathroom on her own, so it's back to the pull-ups. Also, she now walks with her right shoulder hunched down. They say its a side effect of the medication (that and constipation) Chris says she looks like an extra in the "Thriller" video. True, but with less rhythm. Inappropriate? Sure, but you try going through this without gallows humor. Speaking of which...
We've dubbed this mangy cat "The Mascot. " I don't remember its name. It needs a bath, some grooming, a trip to the dentist, and some love. Get in line, kitty. 
       On the second day of visiting, we decided we needed photos of the mascot.I don't remember the cat's name, and my promised adherence to HIPAA precludes me from saying its name anyway, even though it's not a patient. Yet very well could be. We've dubbed the ancient long-haired, tiny-framed kitty the official Mascot. It carries itself as gingerly as the patients (who are not confined to wheelchairs.) Like most of the residents, it isn't able to clean, or groom (or be cleaned, or get groomed)   It skulks from room to room, grabbing a nap on random pillows. It's darling in a super pathetic way. I want to hold it, but I can only manage to tap it gently on the head. My brother wiped its goopy eyes, which I thought was rather generous.

I tried to get some annuals for my mom to plant in this box: She really wanted to, but the little town in which she resides didn't have any flowers. Had ordered them, but didn't have them.

It looks kind of pleasant here; and it is, for what it is. A place for people who have no where else to be; whose level of care is too much for anyone else to grapple with..especially running their own families. Everyone there needs 24 hour care. Few are ambulatory. Most of them smoke, just to have something to do. My mom is like a caged animal, pacing and pacing. When we walked out to the "back yard," she actually shook on the locked gate. We decided, after finding out there were no flowers to plant in the whole town, that we would just play Scrabble.
         Word-building. Social. We talked a large kindly man, who appeared to be a former boxer, since he used a fighting gesture to be playful, which is probably where he was brain-damaged. We're just creating that theory, we don't really want to know the truth. Former Heavyweight champion. He put an "L" tile on the table next to the Scrabble board. Just the "L." Chris looked over and saw "ost" on his wooden letter holding ledge. "May I make a suggestion?" he asked. And he added the OST onto the L. The champ rose his arms up and said "Yea!" in victory. My mom left a few times..wasn't really into it. We made up our own rules and put words wherever we wanted. A nurse brought my brother a bag of chips. I had a diet Pepsi. It was 15 minutes of almost fun.
        When we dropped mom off at a dinner table to eat (with 6 men..turns out that scared her. It was the closest table next to the shelves that house the board games) Chris walked over to shake the Scrabble player's hand and joked about winning a hundred dollars off him. Heh, heh.
      A Vet with one leg wheeled over and confronted Chris:
      "Did you really take a hundred dollars from him? That's a lot of money!? Did he take your hundred dollars?" The guy nodded. Shit. Vet was ready to kick Chris's shins in. Chris had to explain the art of sarcasm.
Chris and mom, on the outside walkabout. Not pictured: The smoking shed
       As much as we tried to make light and be friendly and hold my mom's hand and put our arms around her, it was just..REALLY SAD. We were sad. Quiet on the way home. Chris described how mom was talking about being uncomfortable on her bottom and we thought in retrospect she might have diaper rash..then we felt worse. But when he called the staff after we had a few drinks with dinner (after me and my daughters fit in a Girl Scout Mother's Day ice cream social from 6:40-7:30. Of course I was late. We were playing Scrabble with a brain-damaged former heavyweight champion. ) They were all over it. "She's changed, and in bed," they told us. For that moment, on that day, we did what we could. And beyond. But it will never feel like enough.

Thoughtful young me

Thoughtful young me

Seventies chicks

Seventies chicks
Me and my mom Lynn, 1973