All roads lead to crazy town.

It has been quiet here, I know.

My hair is getting really long.  My mom has been gone almost a year. These things are related. 

My last haircut was with my mom on the day that should have been her second knee surgery, the day after Annie's birthday -- March 17.  St. Patrick's Day.  Mom's surgery was cancelled at the last minute due to anemia.  Well, I said, since you aren't doing that, you could drive down for Annie's birthday and pick me up on the way.  And that she did.   Of course she did.  

We had mexican food a restaurant  no longer in business when we went back in November.  We stopped couple on the street to take a photo of the three of us.  We all tried on mom's burt's bees lipbalm, which Annie claimed as her own since it was her birthday.  We ate tacos and drank margarita after margarita, when we got the bill, we were floored -- by how low it was.  So mom tipped the woman the difference between what the bill was and what she thought it would be -- way over a 20% tip. 

Then we went out for beers with Annie's friends.  

As mom and I drove home, somewhere between Springfield and Decatur, the gaslight came one.  We rolled up to the gas station, started the pump and seconds later all the lights turned off -- they were closing.  By luck, we had arrived seconds before closing and were allowed to buy our gas. 

The next day we had lunch as Sarim Om (no longer there) where my mom waited an hour for her Chai tea, then headed to the thrift store, and then called to see if I could get bangs cut.  

Excited to show off my bangs, and to celebrate St. Pats, we went out for dinner with mom and friends.  The bar was out of corned beef.  I stressed, the way I do, about the nature of existence and how eating out cost money, and money is what you get in exchange for your life energy.  Mom yucked it up and was excited to see my friend she shares a spirit.  A month later -- the week before the last time I ever saw her, as we made plans for family Easter at our house, my mom asked "Will R be there?!"

I digress.  To the Amy Show!

This blog got quiet after the departure of MeanyCold and a good IP meeting.  For a stint, things were better, and Amy has engaged in a lot more social activities in the past two months.

But, things started to fall apart.  For one, we've never seen our beloved FriendlyBigMouth again.  Gone.  Amy's most favorite of all, a warm and loving older woman, has left the agency.  MeanyCold's replacement, KindDistant, is suddenly gone, too, and in her place is the tentatively named ShitTalker.

Anyway, my most recent email:

Hi, [NewQ], 

We had a problem yesterday (Saturday) morning, but both of the numbers I have for you didn't work.  The first was not in service and the second was a wrong number, so I then called [Residential Director].  Can you provide me your correct phone numbers? 

Staff got Amy up between 6 and 6:45 am on Saturday.  I told her to tell them she'd like to sleep till eight on Sunday, that if she speaks up there won't be a problem.  She was very reluctant, concerned she wouldn't be allowed, and worried she wouldn't get to have breakfast if she slept till 8.  I assured her that this is her house, that she'll have breakfast when she gets up, regardless of the time.  Amy called me back to tell me she spoke up and asked to get up later, and staff told her that they'd need to get her up at six to have breakfast, but could then put her back to bed.  This makes no sense.   I contacted Joan regarding this and she was going to contact staff.  Sunday, Amy got up at 8 (hooray!) and a staff member told her, "There is a reason I get you up at six".  That comment was unnecessary and irrelevant, and made Amy feel uncomfortable.  A staff member had mentioned this to me as well -- that she wanted to get Amy up early because it takes her a while to get Amy ready, but what does this matter when there are no set plans for the day?

The other issue this weekend, Amy asked to have hot tea on Saturday at about 10:15 am and was told she couldn't have tea till the evening.  This is not the case.  Amy can have tea any time she wants.  Joan handled this.  Later in the day, after Joan had handled the issue, a staff member told Amy that she couldn't have any more tea.  Again, that is not the case.  Amy can have tea any time she wants.

Amy hasn't had any significant problems with caregivers since the changeover, but a mentality of care persists, and is continually the root of these problems.  [Agency]'s mission is to "empower individuals with disabilities, mental illness and special needs to achieve independence and community inclusion", and Elmwood is a "24-hour home setting for individuals with developmental disabilities or behavioral health care concerns who need to develop independent living skills", but what goes on in the house is more akin to a nursing home situation. 

There are four big issues that we need to overcome at Elmwood.  

1. Amy is in charge of Amy.  If Amy asks for something, she can have it.  It does not need to be checked with her Q or her family.  This needs to be understood by all staff about all issues.  Amy can take her braces off any time, Amy does not need to sleep on a pee pad, Amy can have tea or coffee or food or juice, any time she wants. Amy can shower when she wants, Amy can stay up till whatever time she wants -- in or out of her chair, Amy can choose what time to get up.  When Amy asks for something, she is not asking for permission (she doesn’t need permission) but for assistance with the task in question.
2. Care conforms to clients' needs; clients' needs do not conform to care or convenience.  The clients are the customers.  Staff work for the clients to facilitate full and independent lives.  Amy can have a bath if she wants one before bed, and she can have breakfast whenever she gets up.  
3. Efficiency is not the goal; engagement and involvement are the goal.  In the IP meeting, we talked about how Amy's goal of going to the bank monthly had devolved from her going in to the bank to handle the transaction to herself to them going through the drive through.  This is an example of how engagement and involvement take a backseat to efficiency.
4. Staff should be kind and respectful at all times.    Amy routinely has interactions that are disrespectful, where she is treated like a child, where staff members act as though they are disciplining her (for example, by demanding she behave in a certain way in order to be provided her care) or where a person providing her care is generally cold.  Today, Amy told a staff member that she was not far enough back in her chair.  The staff member told her “let me do my job”.  After they had spent some time trying to position her but it still wasn’t right, the staff member told her “I’m not going to be here five hours”.  This is inappropriate and unacceptable.   

At all times, staff should be treating residents respectfully, recognizing their full capacity, responding to their requests, and acknowledging that they are in charge.  Residents should be encouraged to and assisted in participating in making menus, grocery shopping, making dinner, doing laundry, putting clothes away.

In the interest of my sister, I would like to know what kind of training in disability sensitivity the staff has received, and what they know about each clients disability.  I’m sure the Illinois Council on Developmental Disabilities, Life My Way, or the Arc, all Illinois organizations, would have great resources for professional development of individuals working with the disabled, and I’d be happy to reach out them to assist in this.

I hope that everyone working with Amy understands how truly minor her cognitive disability is, in contrast to her physical disability (including legal blindness).

On the glasses, and really about anything -- Amy likes to know, and should know, the details -- the whys and hows and next steps and backstory, and should always be told any details known about situations relating to her. It is important to Amy (just as it is anyone) to have full knowledge of what is going on in her life and why.  It makes her feel more in control of a life she doesn't exercise a ton of control over, and allows her to make plans and look forward to things.   She asked me to find out what was up with her glasses, and I've passed this information on to her.  I have no doubt that the 6-8 weeks for Medicaid was covered in the doctors visit, but for whatever reason she wanted to know more or didn't catch it at the time.

It's fine to tell Amy things more than once, and in fact, she'll appreciate it.  It is probably good practice to go over doctors visits or meetings afterward with Amy so she has a chance to get it all.  Given that she can't take notes, she relies on her memory and appreciates being told everything in a way that allows her to remember it.  Other examples: if something is cancelled, people should tell her as soon as they know and explain why.  If she needs to get up early, or get a shower at a different time, explain why (staff convenience is not a reason).

Amy says staff have been moving her around, but doesn’t know if they are doing range of motion.  Please ask staff to tell her when they are doing range of motion and tell her what each stretch is (it is all on the printouts the doctor provided to me and I sent to you).  This way Amy will know she’s done all her exercises and that she’s done them twice each day.  I’ll go over all the different exercises and what they do with her so that she will recognize them by name.    

[NewQ], you are awesome.  Thank you for handling all the stuff below (relating to earlier email).  We are so thankful to have you as Amy's Q. 

Best, Allison

There are about ten other issues that have sprung up at the house in the last three week, but I cannot even get in to it.

Good things:  Spoke today with the director of an awesome organization that support individuals with disabilities in developing the lives they want, and she's going to help me.

And the last one is sappy.  At the close of our bedtime call, Amy and I sing, almost every night.  Usually I start it, or come up with which songs we'll sing, or Amy will request one of our recent numbers.  Today Amy busted out with a song we hadn't sang in AGES, and never in our night time phone call, a spark I'm so happy to see.