long day update on Gateway supportive living

Hi everyone,

Today felt really long. Have been getting exhausted from all the research I’ve been doing. I wrote about eight assisted living/ residential places at the beginning of the week. The only one that got back to me was a place in NC. That it turns out charges 18 thousand dollars a month! Another place sadly in the boston area, charges 7 thousand a month! How can people afford these rates? Like literally!

The woman from the NC place, which is called cooper Rice, exchanged thoughtful e-mails with me. She said that yes the people coming in do have the money, or they have people outside the family that “ sponsor” them. I wish I had that plus everyone I know hanging by a thread who needs these types of places!

Anyway one place we know we have available is Gateway. We decided to send Kim a quick e-mail. The biggest thing I wanted to be sure of was their policy on psychiatric diagnosis. Back in October, when they first opened, she said as long as you have services outside the facility set up (psychiatrist, therapist ETC) then you can generally be accepted. As all other SLF places have come to say no psych diagnosis I wanted to be sure before we did anything further.

The big surprise I got was that Kim is gone! We were both really sad about that because she’d been so nice and knew our whole situation. We now have Krista.

She and we had the time, so we just sat down and had another phone call. I wasn’t thrilled about giving all my information over again. Which she did say several times she knew it was probably frustrating to do. She was pretty much as nice as Kim.

The short answer is yes, the mental illness thing is true. Though I’m sure it’s different for each person and I honestly won’t be a bit less suspicious until Mr. J talks to someone over there and gives me his thoughts. Asks all the right clinical questions, and does his Mr. J thing, ya know he has a way of talking to people and getting not only information but a good sense about them. If he says he thinks it can work, and I’m sure he’d follow us every step of the way, though sadly not moving with us LOL, then I’ll relax a little.

As it is Krista was nice enough. She listened intently. She said what I thought she’d say, that she would think anyone with a disability would have depression. I took a deep breath and calmly explained that though yes part of my mental health issues do have something to do with being blind as that’s part of my life experience, my mental illness has been chronic and it’s own disability parallel to blindness. She seemed to understand. As much as anyone who isn’t either in the field or has personal experience can. She said that our first step would be to fill out this pre-application with some basic info. Then one of their nurses would contact us and hopefully could answer the more clinical questions. I’m gonna try and see if Jonathan can just directly talk to nursing before sending anything. I don’t want to send them anything if there’s something that comes up right away,that shows it won’t work out. I’m just defensive and suspicious due to the trauma of Friedman place. There’s no other way to say it. That place lied first of all. Second of all I know now that the staff just plain had no clue about MI stuff. So just having them downplay things or not understand made them worse. And there was always this disconnect for me between me and the other residents, even Robbie at times, because they don’t have mental illness or don’t discuss it. Obveously as this is a psych place, people are totally open and often can’t be any other way about their issues. As much as that can be annoying/ uncomfortable or whatever as some issues are so different to others, there’s a huge comfort that people can just be in the halls crying or yelling or hearing voices and we all know it’s ok. Like there’s no real judgment or fear because we know we all have something. People can just be in the dining room talking about their diagnosis and hospitalizations and stuff. That kind of openness I think has helped me know I don’t have to hide my feelings here. It’s just a more relaxed environment to me about like I said not feeling like I’m the only one.

I tried to explain this to Jess, crying remembering my FP days. The best way I was able to explain it is saying “We’ll be the minority.” And it’s true. The purpose of the place is physical disabilities: so mobility issues, health issues (weight high blood pressure chronic pain ETC), I guess blind is ok since they’re fine with me and I guess some other blind person is applying, she said they do have residents with psych issues but again it’s not set up for that. I’d honestly rather be the minority as a blind person than the minority with mental illness. I’m used to being the only blind person someplace. Since coming here I’ve realized what my mental illness means and that it is something I feel I need to be one hundred percent open about, and any place where I can’t, mostly a place I’m living I know will cause problems. Now of course I’ll have Jess and she’ll have me. But even that will be hard. When we’re having a hard time, we really have a hard time! Each in our own way. Which is what I want Jonathan to get absolute, as much as possible, straight answers on. Like what if self-harm happens? What if we need to be hospitalized? Will we be asked to leave? Ya know all that stuff that I know just by knowing my symptoms and her symptoms will likely come up. And we won’t have nurses and CNAS and caseworkers 12 hours a day that get it. I know the raw loneliness and frustration and sadness and need to pretend that being in a position like that brings up. Hell I can feel that way without being the minority. Thanks to my family I can get into spells of feeling like I need to pretend to feel how I’m not really feeling just by my triggers. Never mind actual situations where I would need to be less open about my feelings or feel I’d need to be because I’m around others who don’t understand.

So we’ll just have to see. Will discuss it with Jonathan. The pros of it are: more money $90 versus $30), not being in this overcrowded place. Better food! Having our own spaces. Possibly a pet, hamster, guinney pig etc. The oppurtunities part, the reason I wanted to move in the first place I think will still not change much. Peioria is even a smaller area than Evanston. So I don’t think any hotlines or anything like that. But my thought was being able to save up, due to having extra money than here and not having to buy snacks to survive and then be able to actually pay for flying back to MA or something.

So I don’t know. And it’s another thing I tell people. How I look at it we don’t need to move. We want to move. We have a physically safe, mentally/ emotionally safe stable place to live. So many people, mostly my friends, don’t have that. For all that sucks about this place I would move them all here in a minute if I could so they could get the basic every day safety measures we have. Food, meds, having others that one hundred percent get it, secure housing ETC. I have become more stable here than I have ever been in my life. And I had an intuitive feeling by the end of college after my quality of daily life was so bad in the dorms, that I needed to live in residential. For psych. And I was right.

There’s no way I want to just turn my back on that stability just because I want to do things that aren’t here. If we go somewhere else and get unstable, then the stuff we want to do won’t matter because we won’t have our basic stability. Of course no place is totally safe. But this has been the best living arrangement I think for both of us for our whole lives.

When I think about it like that it’s like OMG stay! Stay and just be grateful it’s here. And know it will get better. I mean it’s supposed to be. Have those different units, be smaller, have more therapists ETC. That could prove some great advocacy chances for me which I do already here. We can always leave. We can’t always come back especially if we leave the state. So huge things to consider.

I did like Krista today. She was very very nice. And if I didn’t have major PTSD from friedman I think I’d be a whole lot happier. We’ll just have to see how things go when I talk to Mr. J tomorrow.


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