Some of the day to day, I can't even talk about. But telling stories has always been a way for me to make the best of the hardest things. My songs, and now, these journals.
I sometimes worry that the private has become too public. But dementia is a very present, and pressing epidemic. We should be talking about it. Everyone I meet has their own story. And so I am putting my squeamishness aside more and more.
Yesterday we had to get my mom to a doctor's appointment. No problem with a mobile, sane 79 year old. With my mother? The process starts two hours before we even need to get her dressed. There is the labyrinthine conversation. Denial of pain, terrible pain, no pain, "I never said that, I've been telling you...why are you doing this to me, just get it done."
Julie and I did a trial run on Tuesday. I was in the wheel chair. Julie was my aide. I felt so guilty putting the bus driver through the exercise, but we needed to know how it would work before subjecting my mother to the ordeal.
Well, I had a new compassion for anyone in that situation dealing with the public, buses, etc. I have been the one rolling my eyes because we had to take that extra 30 seconds to strap in someone in a wheel chair. What a jerk! 30 seconds!
We had definitely weighed our options. There's the public medicare service. 8 bucks each way, but you are at their mercy and may end up waiting hours on either end of your appointment. Impossible for mom or anyone trying to comfort and cajole her through it.
Then, there's a private ambulette. $250 minimum for two hours. $80 for any portion of an hour thereafter. $330 bucks to go 30 blocks? I don't think so.
Taxi? We've failed at that. Getting her in and out is impossible.
Rental car. Done that. It's the in and out that kills us all.
OK, so then, there's the bus! They are all wheelchair accessible, easy roll on, easy roll off. The bus stop is directly across from our door. And it's $2.75. Mom's going to be miserable no matter which choice we make. If we get lucky and it's a nice day? - we do the math, and make the terrifying choice to take the bus.
She is cranky from the start. Even after the two hour massaging of the whole plan. The best we ever get is a huffy resignation. "Do whatever you want." She groans with each tiny bump. Three times she says "I wouldn't live here for all the tea in China!"
The second we are in the doctor's office, mom comes alive. She LOVES an audience. We have given her vicodin and an ice cream sandwich for the trip, yes, but her arthritis has hobbled her and kept her in pretty constant pain for a long time now. It's not just the vicodin!
She sees the beautiful Dr. Devi? Stands straighter, listens intently, follows every direction perfectly. We see the power of her own need to perform. Maybe this is how we trick her in to walking, standing, getting the kinks out - we have to find her an audience. If we can do that we might keep her mobile a little bit longer; avoid another surgery for a little bit longer.
The bus ride home again is a breeze. Mom doesn't flinch or complain at every jolt. She is worried that there might not be enough ice cream for all of us when we get there. She tries to hand Patrick her mittens as she is worried he might be cold. (it's a gorgeous spring day) Mom at her best.
This morning? Crabby, lost, in pain, wanting to spend more time with me. I suggest maybe finding some new friends - "Remember how nice it was talking to Dr. Devi?"
mom: "I don't want just any old person. I want you."
me: "Well I can't be there all the time."
mom: "I know that, I'm not stupid."
me: "Well maybe we should take a walk later, there are a lot of great people in our neighborhood."
mom: "Nevermind. You just don't understand."
And she hangs up on me.
And I remember:
"Start again more than you ever dreamed you could."
