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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.

Saturday, September 8, 2012

Being There with Les and Diet Cherry Pepsi

          SO. Thursday, I took my mom the spooky doll, thinking it might get a glimmer of recognition, and just because it's hers. I also brought Alex's portable CD player (he doesn't use it anymore; he has an Ipod) and the zipped-up jazz library.
          She had vacant eyes. Has. They used to be blue gray, and now they're just gray.
          When I walked in with the doll, she responded to neither of us any differently than other objects; inanimate or animate. (Food, other people.)And I say that, today, attaching less meaning to it than before. I'm not slapping the front of my hand to my forehead "uuuuuugh my mother doesn't knooooow me..."But it does suck.
After small talk in the common area, where scrubs-clad workers were cleaning up after a late breakfast or early lunch, one of the nurses took the boom box and said she'd put it in her room.
          My mom's roommate is probably ten years older than my mother (most patients there are) very hard of hearing, very sick (confined to bed) but lucid; giving specific updates and directives. "I need to be changed, and I've got about half the water in the bottle, and could you please hand me a tissue and this book..."
          Seems like that would suck even worse than just floating around? I have to think so, because yes, even at the end of the life-long journey to "look good" and "have it all," it's about comparing.
Geez, I have little functioning brain power, but, whoo! At least I'm not as bad off as THAT guy. He gnawed off his own foot..." Total gallows humor. I'm sure it was a War injury. Or maybe Diabetes.
I'm awful.

          So I rolled her outside, having gotten a helpful tip about releasing the back of the chair so that she can lean back and I can move the wheelchair without having her little slippered feet drag along. She's still carrying the doll, and I have my purse, and a Diet Cherry Pepsi from the vending machine.
I have a flashback to when I used to push my twins around in a double stroller, heaving my purse and diaper bag to the left and opening doors with a right hand (or pinkie finger if holding something else in my right arm), holding it with a hip and pushing the door open with a foot while I throw in the rolling chair into the doorway.
Anyway we went outside, but most of it is reserved for the smoking shed in the back cement yard area. Half of the patients cant hold their own cigarettes, so the aides have to hold it for them. My mom isn't even bothered by the second hand smoke, which says volumes because the only thing that bothered her more than smokers was meat grown in factory farms.

          I decided now would be a good time, away from the smoke, to listen to the music, so I found an outlet at the end of a small sidewalk and left her here to get the boom box and music. Just like this.

          While I'm getting the boom box, take a small break and go back to 2010 to check out me, my brother and my mom TWO YEARS AGO in July. She was living independently, with someone coming in to buy groceries and help her pick up; she had an automated pill dispenser at the time. That's it. Fricking fast decline.

I look thin there. So does Chris but he always does.

          On this day we also went, after our innocuous trip to Riverfront Park, to tour assisted living facilities and a few Dementia Care units-so Chris ( who lives in California) could be a part of this rich pageant called early onset AD.
At one, which ended up being more like the place she is now, for people really far gone and out of money (we hated it and couldn't wait to get out of there) my mother was doing her normal person routine; turning on the charm with the front desk/tour guide person: "Oooh, I really like the way your flowers look our here, nice decor, heh heh, Well, we need to get going now, my son's just here to visit."

          But the best place, the place to which we (my brother, the previous court-appointed guardian and I) were planning to move her (Clare Bridge is the HILTON of dementia care in Spokane) was very stressful to my mom. She told Chris: "I would rather kill myself than live here."
So, we stopped the plan.
          And then she spent all her money on home care and then it was gone, and her condo wouldn't sell, and then she qualified for Medicare and there was only one place--an hour outside of Spokane- that would take her when she was kicked out of her swanky "retirement community" for months of non-payment.

          And here we are back at the cement slab with Les McCann and Diet Cherry Pepsi.

           I plugged in the boom box in our own outlet at the end of a small sidewalk, and I played it. I tried to play Tony Bennett, but it turns out that it was a DVD and that I lied about having brought the CD collection, I only put two in my purse.

          She heard the Les McCann (Greatest Hits) but didn't respond strongly; just looked the direction of the music box and tapped her left foot.

          I skipped forward a few tracks (God I hate this music) and she dropped the doll. Then she reached down to the stereo so I picked it up for her and she held it in her lap. I won't say that peace overcame her, or that I had evidence that she was getting any specific brain-building (like some version of the classical music for babies theory) or spiritual benefits, but I can say her focus charged, or that she simply had focus. And I sat there.

          I thought about all the hours I spent with Alex in my arms. Or when I was trying to wean him from being nursed to sleep, how I laid on the floor with my arm weaved through a rung on his crib (until he was deeply asleep enough to dare move my arm) I had no where else to be in the world then. Now I had other places to be, sure, but not for a while, so I stayed and watched her. She got less nervous, and seemed to be relaxed as she closed her eyes. When she seemed to be losing her grip on the stereo, I tried to move it off her lap, but she kept holding on (like my toddler with his half-asleep death grip) So I kept my foot beneath the stereo so she wouldn't drop it, and I moved my hand to the handle a couple times, too.
         One time, she took my hand. Not assertively, but still. And I held it for about five minutes.
          I told her I would come once a week to listen to music with her. I may have lied, but I will go more often. No one else can do that. Just sit, and watch while she sits and listens. I saw her expression, once, for about 20 seconds, but then it went back to fog. I cried for about five minutes, spiralling down the "my mommy's gone" hole and then took several deep breaths to regain my composure, because, Hell. Why do that for long if I can help it? And then I drove home, but actually felt like I did something. Even if it was just being there. And it wasn't as heart breaking as I thought it would be.
Except that I'm lying again, because it really fucking is.

Thoughtful young me

Thoughtful young me

Seventies chicks

Seventies chicks
Me and my mom Lynn, 1973