About Me

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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.

Sunday, March 9, 2014

Transition blues and Amsterdam envy

            I just was writing the title to this blog and I couldn't remember the word "Amsterdam." Shit. I'm so afraid it's happening at moments like that. Like I mostly think my ship is floating along and I've got a huge awesome voyage still ahead; I'll have grandchildren! Then suddenly I don't know "Amsterdam" and I can hear the water already starting to seep through the sides. But enough about me, (ha! It's ALL ABOUT ME. Every minute)
           Last week I went to see my mom a few times. One early evening, she wouldn't open her eyes-for anyone-and was refusing to eat. I tried to look at it from the perspective of a toddler in the midst of a quiet tantrum; the implosion brand. If such a thing exists.
           I was told there would a "rough transition" after making the MOVE. And that is what it is, I guess.
          My social diagnosis (as I pretended among the staff to have my "big girl panties" on, while in reality crying in her room as I was taking photographs from the Creative Memories albums she and I made in the 2000's to go with the biography sheets I completed for the facility.)
 
Oh God she's pretty. High school prom photo, her on a trip during which she hung out with James Mercer's (Yes! the lead singer of The Shins) family in Sidney, MT, and lovin' on Alex.
was that she appears to be "being quietly obstinate;" that refusing to eat "I assume is her way of shutting down and kind of saying 'F off I'm on sensory overload.'" "Yes," they said. "Or maybe still asserting some independence."
           The next day I was called by a physical therapist and asked why she has a swollen hip, with lopsided legs and no range of motion. I just said she'd fallen a few years ago and had been basically in a wheelchair because she didn't want to stand anymore. (And then pictured some hidden camera Hellish video of old people being absurd and left to sit for hours or thrown around) and yes, Lynn now has a personal occupational and physical therapist, with no desire to stand or talk, and a gorgeous setting which she's too overwhelmed to begin to take in. Too much too late. 
           But that's not even what breaks my heart today. It's this CNN REPORT by Dr. Sanjay Gupta about this one-of-a-kind "Dementia Village" in Amsterdam. They wander from store, to building, to park. All the grocery goods are not priced, because it alleviates confusion. It's 23 minutes long and made me want to start one here.. Somehow. Yet another reason to be wealthy, which I am not. Perhaps just to be an advocate or at the very least a better human. It's an amazing model to follow. Or emulate at any level.
http://www.cnn.com/2013/07/11/world/europe/wus-holland-dementia-village/

Holding hands with late-stage Lynn






In which I am an Alzheimer's-book-smart show-off

       Mom was playing with my hair. Playing and pulling; like a toddler. I love it and the attention makes me giggle. Then she was rubbing against her chair, so I scratched her back and put a little lotion (although I only had strongly-scented stuff in my purse, which she used to hate) on what is almost certainly eczema. 
       "Where is my mother?" Asked a lady sitting two chairs down in the hallway-obviously visiting from the other, higher-functioning wing.
      "She will be here in a few minutes," I assured her. She seemed satisfied but then I followed up, needlessly. 
      "Moms are very busy." Smile. 
      Then, patting myself on the back for really knowing how to be in the world of people in that charming stage FOUR of Alzheimer's- (My mom being in stage 5 or 6- I'm soooo wise.) I thought I'd put it over-the-top by saying "Your mom loves you very much." 
      She looked at me indifferently.
      "Well, I don't like that at all. But I will be kind." And she sat abruptly back in her chair, and I laughed into my Mom's lap because other people's Alzheimer's is fricking hilarious, and she flicked and pulled on my hair some more.
     A few minutes later the lady walked over and had a pretend conversation with my mom and I about my vest. 
     "So," she said, "Are you carrying anything?"
     I told her, "I've got some methamphetamine and a little cocaine is all." 
    "Did you say message?"
    "No, meth. I was being sarcastic. I like to be funny, but I'm not."
     She smiled, patted me on the head, and kept walking in a small circle, then into the closed dining room to check it out while the nurse's aides were concentrating on getting the wheel-chair-bound their nighttime snacks. I wish I'd enjoyed my mother's wandering days more, but frankly, they were rather exasperating, because they were frantic, and she was not in a beautiful, safe loop-shaped facility. I really enjoy this lady waiting for her mom. 
     But right when I was daydreaming about the "good old" (read: much more horrible) days and enjoying my new old pal, my own mother laughed out loud and declared a non-sensical thing all conspiratorially, as if gossiping. It was cute and I focused back on her and said goodbye.
     I introduced myself to the lavender lady as I left and she shook my hand three times making a strange squeaky sound effect with each shake. 
     Man I love his place. It's like a sweetly deranged Hilton you can't leave (Well, not without the code, which I have because I'm SO WISE).
Just noticed this sweet ass paint job on her wheelchair tonight. Looks all 70's motorcycle helmet/jet boat.

Saturday, March 8, 2014

Singing Stevie in the Late Stage Wing

         This is about the best I could have possibly hoped for, as far an an environment for my late stage mama. But still, someone seems to have a dirty diaper. So we've lathered up with fragrant lotion to quell the smell. She's really holding my hands today, which is sweet. I got her some pretty slippers with gold shimmer and a new cobalt blue long sleeved T, also shimmery. (Clearance, or as my dad calks it, the "no one else will buy" rack at Shopko.)
        There is a man to our right making quite a production of reading the newspaper. One of the activities  staff read a headline: "Talking Trash" (God I hate idioms as headlines) and he's saying little phrases as he-rather dexterously-  turns the pages. He has a stethoscope so maybe he was a doctor, or played one on TV. He seems quite studious and is maybe following financial trends or looking at the comics or just clinging to routine.
        The guy to our left is yelling "help me!" and another is bellowing, "Hey!" When he gets eye contact with me. When I walked by him to get water, (or look for smelling salts-seriously it is ripe in here-it's usually not but it's lunch time and the staff if trying to get that going) he did call me "Madame" (is there a silent e?) which was quite polite. Perhaps a world traveler in his "prime" which may have been ten years ago, or two.
        There's a bad Jackie Chan western movie in (on a big flat screen TV-not the one with Owen Wilson) "Hey, madame" guy appears to be dozing.
         In spite of the charming country Americana ducks and Rosebud sled-old-photo-type decor, with some warm light fixtures and pretty sconces, I'm still dreaming of the "Dementia Village" in Amsterdam.
        And I think my mom has the dirty diaper. Just the same, I'm singing with Stevie Wonder's "Isn't she Lovely?" On my phone while taking notes and generally multi-tasking. Why would I be different than with my kids? "Yep, totally present...Oh, wait...this giggling baby meme is adorable." 
She used to like Stevie, and I did see her tap a foot for a few beats, really.
        And as we have left that room and are sitting in the dining room, I really don't think the poo smell was her after all. And I'm going to get her to eat some veggies. At least my loved one can still eat solids. Some of them in here can't. 
Ah, but the decor...

I call this a warm light fixture. (Not pictured: Wild duck decor. SO MUCH duck decor.)

Sunday, January 26, 2014

The Victory Lap along John Wayne Trail

I've had a good attitude this week. At the exact moment my brother texted me a photo of the front of his personal dressing room door from the Conan O'Brien show last Thursday afternoon, I also received a text from my mother's guardian informing me that she was going to move our mother from the rural nursing care facility where she's been nearly three years to Pine Ridge, a tastefully furnished Alzheimer's long-term care center just 15 minutes from my house, rather than 1 hour. At the really nice care facilities, within the memory care units there is always the unavoidable acrid urine/soft food smell, but it is masked by better smells: Potpourri or maybe candles? Hope? Something that makes it tolerable. Decent decor actually does a lot. But I digress.
Conveniently, I had kept the parcels (complete with foam packing peanuts) which housed my twins' birthday gifts  in my living room for the past two weeks. They were perfect for the small number of "valuables" I needed to pack for my mom's new place.
I brought a large bouquet of flowers for the staff, because they have been sweet and patient with my mom, and I know they have cared for, and grown attached to her. I also included a round danish tart pizza from Trader Joes on a plastic disposable tray that I lined with two oversized, heart-shaped doilies before plopping on the mega fruit danish. Because, like I said, I was in good spirits.
It felt fantastic to drive past all the dismal markers on highway 27 and know that I'd be driving past them for the last time.
Does the John Wayne Trail even really exist?
I listened to a book on Audible, as is my Tekoa-trip-tradition. Today it was The Fault in our Stars. Let me just say, I LOVE it. By the first five minutes, (so maybe 7 pages) it succeeds in being a funny book about a teenager with stage four cancer, which is surprisingly extraordinary. And you know what? Dying is more sad than Alzheimer's. Sick kids just trumps sick grown ups..even those who are too young to be dying, you know? So it added to my happy mood, as good writing always does. Shit, I was just in a great mood all around, getting to make a victory lap along the (alleged) John Wayne Trail one last time. You know how it feels to quit a job that you dislike? That kind. A posthumous, thanks, again, to my Depression-era psycho-about-squirreling-money grandparents who spent absolutely nothing in their living years, because my mostly sad uncles now have shiny new cars and my mother gets to move into a swanky-ass Alzheimer's unit. And the number of people who get to leave Tekoa Care Center for greener pastures is just, very low, I suspect. When do old people get unexpected windfalls? So thanks, grandparents. This does make a difference in a way that no one could have foreseen.
How freaky is it that THIS is the last road sign before the facility?
I have taken a few photos of it.. as has Chris, and I'm sure glad that my mom wasn't destined to be buried by here or that my brother or I were never hit by a car here or something because it was always a little eerie..
Having handed out (to surprised staff) the mega Danish and the flowers, I got right to work on placing within my foam packing nuts one glass paper weight egg, five glass-framed photos of my family, Creative memory scrapbooks my mom put together in the early 2000's, various loose photos, and one of my favorite framed wedding photos. Chris and I look so young, and were; we're illuminated by a magic sun ray and my mom's shiny hair is in in the left corner, as she is stepping, I believe, in sand made wet by the wave that crashed through my altar just minutes before.

My mother's 91-year-old roommate, so annoyingly coherent, is also deaf, and kept asking me questions as I attempted to make quick work out of my two-box project while listening to music. I finally just wrote down what was happening on her legal pad so I could sing along to Macklemore (She's deaf, I mentioned?) and dance, with minimal spirit, admittedly, behind the shoddy curtain that provides the two women "privacy."
And sweet Jesus, there was the doll that should have been in The Shining
"I want to play with you, Lisa. For ever, and ever, and ever."
But, you know, She didn't look as scary. She looked happy, because, you know..I was all optimistic. Still, I didn't pack her. Nor did I pack any of my mother's frumpy clothes, or try to solve the mystery of where the pre-fab closet-full of her own stylish clothes had gone. It doesn't matter. My mom is rich, for a few years. All the full-grown sized onesies her guardian can get permission to purchase with court orders are hers for the having. Yes, she wears onesies (with the pull-ups) It's too much to get into, And HIPAA precludes me from doing so.
The impatiently yelled responses to her lonely roommate notwithstanding, the packing took me only 40 minutes or so.
Then I went into the all-purpose room where a nurses aide in her twenties but with rough teeth from years of smoking was conducting "Trivia!" hour to a mostly incapacitated audience. She was asking questions which appeared to be from a book published in 1989 or so. I learned that the first recorded UFO sighting was not in Roswell, NM, but near Mount Rainier, WA. And, that Stormin' Norman Schwarzkopf's Dad led the investigation into finding the Lindbergh baby. (How it went down was something like this: Her: The father of which famous American assisted on the team to help to find the Lindbergh baby?" I didn't know, but was able to help her pronounce "Schwarzkopf,"when she said "Stormin' Norman.")
A decrepit but spirited half-squinting 100-year old lady (maybe 88? who can tell, really?) I hadn't seen before was yelling"78!" Every 90 seconds, so, given she was the only active participant, I started posing questions that could have that answer.
"What year did former president Nixon start drinking in earnest?!" Pause. "78!" "Yes!"
"When did I first read The Outsiders!?" "78!" "Yes!"
The aide read: "How many boxes did it take to carry the Statue of Liberty?" and there may have been another answer but no one will ever know because now I was in cahoots with the other three staff members and we shouted, with genuine glee, "Yes!" when she answered "78!" And then little Ms. Magoo added "Boy, oh boy!" to her seemingly limited repertoire.
I gave my mom a kiss on the cheek and said, for the first time being absolutely truthful and without guilt, "I'll see you tomorrow." 
I will move my mother's things into her new room inside her new place in the morning, and greet her once she makes the move tomorrow. There is concern for a potentially "rough" transition after her new homecoming, and I hope that if it comes, it doesn't last too long.

Thoughtful young me

Thoughtful young me

Seventies chicks

Seventies chicks
Me and my mom Lynn, 1973

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