Homeward Bound!

As always, the Northwest was great.  More photos and stuff (food and food and food) to come.  Most of the way home.  Decided at the last minute to crash at Auntie-Mom's late last night instead of heading straight home so we could see our girl today.  Lounging in backyard getting some work done (WORKING ON A SUNDAY; I AM A GROWNUP) before heading on to visit our girl and then head home.

I'm so behind on updates, and I must share Amy's face when she got her computer!

Still waiting on the maybe-Amy-house.  Nothing new at Amy current house (same old crap), but I'm ignoring it for now because so help me god, we are getting out of there soon and I can't keep spinning by wheels on that bullshit.  I'm doing my best to keep her spirits high, but I'm done dealing with those people for anything but clear cut abuse.  We instead are investing heavily in having a good life ready to go the moment she is out of that house -- computer, bike, room at our house.

Most important: tomorrow at 3 pm big stuff happens!

Doh!

I bought the WRONG IPHONE.

Yep.  I don't know.  A lot is going on.

She opened it, LOVED IT, asked fifty times if we could use it now (we hadn't set it up yet).  Annie put in some time in the morning helping her try to use Siri, and it just wouldn't work, no matter who tried it.  At some point, Annie said to me "is it possible this phone doesn't have Siri?"  Nah, nah, of course it does.

An hour later it clicked.  No, the 4S has a Siri.

Lucky us, we have Walker, and he took care of business, installing the 4S operating system.  For last 24 hours we dealt with some shenanigans of having to greet Siri dozen and dozens of times, hoping it would eventually connect.  Came in from sanding lawn furniture this evening and said "Hello, Siri" and it worked!  Woo hoo!

Defeated

I have photos and great things to say about our special birthday weekend with Amy, but right now, we are exhausted, still driving home, and getting tearful call after tearful call from Amy.  I completely blew my top on this last call.  What's the point of all this driving, effort, and money spent if I'm just going to spend Sunday on the phone with her in this state?  Ugh.  

I should have seen this coming. We narrowly escaped major tears twice -- once Thursday when family cancelled (l got a heads up and was able to get an extra special guest to soften the blow -- hooray, Erica!)), and again today when family cancelled (cue extensive, high energy, exhausting sing-a-long).

Also, yeah, I'm embarressed by the way I sometimes talk and feel about my sister.  I respect her and adore her, but this is really hard.  I've never felt her pain so vividly as I do this last year. It is seering, and the sense of responsibility for her happiness that I feel is exhausting.  Also, as with all sister relationships, I suspect, sometimes I just feel like she is being a crazy bitch and lashing me, and I just want to slap her. 

And then there is her disability.  I think a lot of the not swell behavior and emotional responses are actually learned behaviors born of extreme frustration, anxiety, and lack of control, and so for now, I strive to get to a situation that will breed better responses, and can't accept this as an unchangeable part of her disability, and with that comes frustration with not being able, so far, to fix this.  Her state is not going to improve in her current house, and I have frustratingly little control over getting her in to a new house.

I really hope there is good stuff ahead, and look forward to being a person who can say yes, it can be very dark, but there is light ahead.  You can get there from here.

House Party

Annie joined Amy at her house to celebrate her birthday with pizza, cake, music, and presents.

She is 25.

Happy birthday, Amy.

This is your year, Amy.  We're going to make things happen this year.


Photos from our recent visit to the maybe-Amy-house (still waiting).  We'll see our girl this weekend for swimming, pizza, and a slumber party.

The good stuff.

"Annie just called me out of the blue and said are you doing anything [on your birthday] and I was so happy I almost cried."

Amy's party is Saturday... swimming and pizza, but her actual birthday is tomorrow.  Annie is cruising out to Aurora to spend the evening with her.  

Frustration: a timeline.

Amy's glasses broke in late November.  She'd had them a couple years.  The snapped into several pieces.  A staff member took them in to see if they could be fixed, but they couldn't.  Seriously.  In three pieces.

November 30 - I first emailed her Q about this.
December 1 - her Q told me it would be resolved by end of day.
December 3 - she told me she'd make Amy an appointment for the following week.
December 28 - she emailed to tell me Amy would need to pay $200 -- to fix the glasses it has already been established can't be fixed.  I told her that she Amy needed to get glasses from someone accepted Medicaid.
Mid-February -Amy has eye exam (which she did not need -- she got an exam in November) and is told she will have her glasses in one month.
June 13 - Q tells me that Medicaid won't pay for glasses because she can only get one pair of glasses a year.  Amy has not had glasses in several years... it sounds like the glasses still havent' been order.  Q "assures" me that there are people who have been waiting much longer than Amy.

Amy still doesn't have new glasses.  She's still wearing her glassed from high school.

Dammit.  I feel like I'm failing at everything, and this in particular makes me feel like I'm failing my mom because seriously, HER GLASSES!  I can't control this stuff, but the people who can aren't doing their jobs.   Of course I feel like I'm unraveling!  This is INSANE!

I don't know how to fix this, or the 50 other things.  For 13 months of I've sent emails, gone to meetings, talked to supervisors, talked to supervisors supervisors, reported them to the state, gone to more meetings, sent more emails  Nothing has happened.

Memories.

So clear sometimes they break my heart.  That was a GREAT day.

Spoiled.

For Amy.  Don't tell!  It's a surprise!

I can't help myself, and this is something I will need to work on before we have kids.

The rationalization:

• Got it for song on craigslist.
• Yep, Amy is getting a computer for her birthday, which is an awesome and huge gift, BUT we don't want to send it home to her current house and dick around with the shenanigans there if it looks like she moving (keep on rootin for it, nothing in stone yet), and we need more time to get it ready for her, so she'll get this, too, and it will take the sting out of not taking the computer home yet.
• Amy HAS to learn to use SIRI.  One day, her Iphone 3s (with old school voice control) will break in a way that can't be fixed, and sooner or later, 3s's will be hard to come by.  So, while she still has the 3s to use as her main phone, we want to set her up with a 4 with only a handful of numbers in it so she can practice and try to learn SIRI without accidently calling and texting everyone under the sun.
• If she can't do it, Walker gets it!

Walker totally eggs me on, btw.  There is so much stuff we can't change, or is very very sloooow to change, and damn it is fun changing the things we can.

Speaking of things slow to change, in response to yesterdays email complaining that Amy had to wait three hours to use the toilet and that she was put to bed at 7 pm, staff told Amy she was a liar because "that's when we shower you.  that's your shower time" which DOES NOT MAKE SENSE as an excuse, and also doesn't make Amy a liar.

I can't write here what I told Amy about all that, but if you know me in person, you know that it was "vibrant".  

This really happened.

Please provide respectful and sufficient care to my sister, chapter 865:

Hi, [Q],

I've got Amy on the phone with me here, and she wantsme to relay some problems to you.
Tonight, Sunday, Amy came home after a day with her family at 3:20 and was told she had to wait to use the restroom.  She wasn't toileted until after dinner, at which time time she was showered and put in bed... she was not sure on the time, but it was before definitely seven pm based on her call to me from bed at 7:04 pm. 

The other night she was also put to bed really early because one staff was leaving earlier than usual, and the the still staff are under the impression that they need to have two people to use the hoyer (possibly because it is the crank one instead of the electric one they prefer twoo people, but still, only one person necessary).   

Amy asks that you let staff know that she should not be asked to wait more than 15 minutes to use the restroom, and that only one person is needed to use the hoyer and shower her.   Amy should not be put to bed early for staff convenience.  

Best,
Allison

Three hours, she waited, to go to the restroom from the time she asked.  Because she was not able to go when she the opportunity at noon, this means that she used the restroom TWICE on Sunday.  I dare you to try this, or even three times.  

Sittin pretty.

My legs are covered in orange paint.  Repainting our retro patio furniture a bright flaming orange.  Hopefully this fall we'll be making ourselves some modern adirondack chairs like the Sawyer at CB2.

Yesterday at the Restore, a major score!  A funky retro laz-e-boy recliner for the new house!  A recliner with feet that pop out is a must have for our girl Amy, but god those overstuffed ones are an eye sore.   Her currently lives in our garage and only comes inside when she does.  This will give her comfy visits and is soft on our eyes.  It's no retro Milo Baughman, but it was also a 1/20 of what that chair would cost. Some day I'll find of of those for a song, but this is pretty flippin awesome.

I'll be sanding and attaching the arms and legs.  The upholstry is tighter than it looks in the second picture.

The Maybe-Amy-House visit summary.

Gorgeous neighborhood, nice wide ramp the front door, beautiful back porch and yard.  

Older house, kinda crowded, residents share rooms, hard to drive around in.  

Staff is devoted and has been there over ten years. "Q" (case-worker-ish) has been there three years, is fun and warm, and talks to the residents as peers, not patronizing or commanding.  Residents are diverse and AMAZING.  If Amy moved in, there would be THREE power wheelchair plus a push chair.  HUGE turtle top wheelchair van.  Focused on building independence.  Obvious respect for clients as people.  

Initial worries:

• Amy can't do a standing transfer, will she able to live here?  Yes, not a problem.
• Amy may need extra help in the morning, and there is currently only one AM staff member.  Response: we'll assign more staff if needed.
• Amy would be sharing a room.  WHO CARES?  The people and potential for independence is AMAZING.
• The house is kind of hard to drive around in.  See above.  

Also, they already have wifi, so that would be one birthday present worry off our plate.  Extra bonus!

The big thing: the person who currently lives there needs to be accepted in her house first before we can move forward.  This should all work out, but you never know.  Fingers crossed for Amy, everybody.  She needs this.  

Stranded.

When Amy lived with Mom, she had PACE ADA and apparently PACE para-transit through Dundee Township.  We never realized it was township specific, or fully appreciated how great it was.  Amy could take rides, delivered door-to-door, in the immediate are for $1.50 for the first ten miles and then a per-mile rate, or get rides outside of zone at a straight per-mile rate.  The per-mile rate was expensive, going to Aunt Jane and Uncle Ken's was over $65 depending on the day, BUT we could do it if we needed to.

Some time ago, we learned this was a Dundee specific service and seeing as how Amy didn't live in Dundee anymore, it was taken away.  We had to jump through hoops to get enrolled for Aurora township service.  I talked to half a dozen nurses and doctors, and followed up countless times in order to get a proof/description of Amy's disability since Aurora wouldn't allow us to use the one that had been submitted to Dundee some years back even though Amy's disability has remained the same.

Then, Amy had to make an appointment and  go to downtown Aurora with a photo ID, in person, so they could make a copy.  So, the disabled person in need of transportation needs to travel to show their ID... so they can have transportation.  Not to mention, what if Amy didn't have an ID?  How would she get to the DMV to get a new one WITHOUT TRANSPORTATION.  To make this happen, Annie drove an hour to Amy, picked her up and took her to the office (yes, in theory, Amy's house should have facilitated this, but there seems to be a 3 month to 1.5 minimum waiting period on everything with them -- like getting glasses, or going to the doctor) 

Finally, we have service again!  Except, this service isn't like the last one. Amy can only travel door-to-door in very specific zone.  That's it.  That is as far as she can travel.  She has the option of using her PACE ADA outside this zone, but that would require THREE transfers, and scheduling three different busses to pick her up, in order to get "home" to Jane and Ken's.

Aside from the fact that Amy has limited vision and mobility and might have a hard time making those transfers or a problem being left in a parking lot god knows where, this would take HOURS for her to travel the 50 minutes.  Amy has a limited time frame for independent travel.   Let's not dance around it -- how many hours can Amy go before she needs to go to the restroom?  If she takes the bus, she doesn't have her equipment with her.  If she wanted to join her family to out to eat and head home, it could take 2+ hours each way, plus a 2 hour dinner.  6 hrs of either holding it or having a truly unpleasant trying to use a public restroom without a appropriate equipment saga, which doesn't always work out.

So, that is it.  

I'm just so tired.  We just through hoops for things that turn out to be nothing helpful -- like paying through the teeth for her birth certificate in order to qualify for her death benefit from our mom, which turned out to eliminate her need based SS, and only increase her income $18/month, which is seized by her agency anyway and so doesn't change anything for her.

Taking Care of Business Films presents...

A Home for Amy from Anne Kelly on Vimeo.

Panting.

Aww, god, I'm at work and I am panting and just have this rot in the pit of my stomach.

I will write a whole post later, but basically, the visit yesterday was amazing, but I don't think it is going to work out, and it has me near tears, but I've got to put it in my pocket and get my mind back on work.

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.  

--

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. 

Naperville's finest.

A good Amy visit is marked by not 1 but 2 visits to Hot Breads.

Get ready.

Manicure, home facial, wheelchair tuning, and outfit picking with our girl.  Even washed and vacuumed the van.  Big day tomorrow.

Shipped!

Amy's computer is on its way to us!

The ball is rolling!

Ok, it is official!  The good news I hinted at I can now share, since there is action and I'll be telling Amy when she gets off work!

On Annie's birthday (workin for our girl on her own birthday!  MAD PROPS), she and I met with an organization in another suburb that we were connected with by a person from the Illinois Association of Microboards and Cooperatives.  This org we met with was known to be more progressive.

Two weeks ago I got a call that they might have a spot for Amy in one of their homes.  The residents there are 22 to mid-40's, and very social.  One of then is really into self advocacy.  Today I got the call to schedule a visit.  We visit next week.

I am so excited I feel sick.  I hope this works out.

Let's hear it for progress!

Yeah!

Wish us luck.