Bookends

Yesterday, we visited Amy's maybe future house.  We pulled back up to her current house around 8 pm after a ten minute sing along to pop songs we didn't know, just singing boops and bops and yeah yeah yeahs over the music whenever we could grab a note.  The only thing more intense that two Kelly sisters together is three Kelly sisters (hooray for Walker and Spencer!).  It was a beautiful summer evening, the last minutes of bright evening sun.  We mugged for photos in the driveway.  Amy gave Daisy some love and I showed her my new bike.  It was just such a great day.   A lot of feelings all over the place, but a really good day.

We walked in to a completely silent and dark house with two caretakers watching tv.  Amy's face twisted with concern.  "My shower… will I get to --"  "I don't think so, Amy, because so -and-so leaves at 9 and it's already 8:30, and you know we have to have two people to use the lift with you (no they don't, btw.  total bullshit)".  I nudged Amy and with my eyes begged her to let it go, hurrying her back to her room.  "See, and you still have stuff to do with your sister.  It's too late."  

We headed back to Amy's room to furiously reorganize her closet and go through her books on tape, since they don't t hang her clothes up with any organization (they hang multiple items of clothing in a pile over a single hanger and stick in the closet -- doesn't this just make more work for them later when they can't find clothes for Amy?!), and never send her book cassettes back, even at her request (you literally just have to drop then in the mail, they are marked with the address and postage paid).  This is always an intense half hour of rushed pickup so she can get to bed in the staff's desired timeframe.  Yesterday, the irritation was exacerbated by the fact that Amy's overhead light doesn't work.  She called me about a month ago to tell me I needed to buy her a lightbulb, to which I thought HELL NO but actually said that Amy, this sounds like something you can and should handle.  Politely ask your staff to change the bulb.  Apparently the problem is beyond the bulb and the dimmer needs to be replaced, and they put in a work order.  A week ago.  Three weeks after it stopped working.  I mentioned that this was really rough for Amy, and that the candlelight brightness of her room really exacerbated her already near blindness.  Then the staff member told me how inconvenient it was for her also that it didn't work.  Yeah, ok.   Not inconvenient enough to deal with it in the first three weeks.  

As we left, we walked by the other staff member, still seated on the couch watching TV while down the hall,  Amy was being denied a shower due to the lack of two people to assist.  

And so that was our return to her current home, where the house is spacious, the doorways are wide, and the staff could give a shit about the whole person they are caring for.  

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Walker and I spent Sunday with Amy getting her revved up and confident for the visit.  In the evening, we headed to Auntie-Mom's.  We brought fixings to make a massaman curry, and sat on the patio till late talking to her and Uncle Ken.  We slept over and set up at the kitchen table to telecommute in the morning.  

I had a little Annie time before we picked up Amy, which is great.  She gives me a charge.  Being with her is something that doesn't change.  

Annie asked me today what makes me happy.  Told me the blog is so depressing.  I hemmed and hawed.  I like you, I said.  I like making things with my hands.  I like improving things.  What I figured out some months ago, I told her, is that I will only ever be as happy as Amy.  I'll be content when she is.  I'll be happy when she is.  I think I felt this way when I was younger, combined with some resentment, but then I went away to college and became all about ME and MY OWN THING, and Amy's overarching care became Mom's thing.  

It makes me so sad to think that first I left for college, then Annie left for college, and then my dad left.  One by one, we left mom alone with an ache in her heart.  Even before then, she'd told me she was the only one that felt the way she did -- the heavy burden and the intense love -- and that she was alone in her devotion to providing complete physical and emotional care to Amy, and it was true.  But then we all left, and she was left truly alone.

When mom died, this piece of me woke back up, and I FEEL SO MUCH, all of the time, for Amy.  When she is upset, I get upset.  When her world doesn't make sense, and the shit fest is in full swing, that's how my world feels, too, and then there's also this thick fuzzy layer of ANGER on top of it  -- spitting anger in all directions -- at my dad for disconnecting, at my mom for dying, at Amy's house and agency for being such f-ers, at Amy, and at me for being such a self-centered, resentful ass.  And then my brain just cracks, and it is terrible, because then I am worthless and totally broken and struggle to comfort her, and I am exhausted.  

So, today, after lunch and thrifting with Annie, we drove together to Amy-town, picked up the van, then parked in her driveway waiting for her to get home from work.  When we saw Amy the first thing I noticed is that THEY DIDN'T WASH HER HAIR last night.  The same people who the day before watched us do facials and pluck eyebrows, and who we talked to about Amy's BIG DAY then did not wash her hair when they showered her.  

So, then there is everything that actually happened on the visit.  That's up next.