continued answer of no with prns and no in person trip to BCIL and bedbugs again!

Hey everyone,

Another frustrating day. We had Callie the ombudsman who used to be staff here really check into the PRN situation. She called different staff here including assistant clinical director who all repeated answer of very likely not. Says they will try talking to our doctor on Monday but probably won’t do any good. Jess heard the same thing from the woman that schedules doctors.

Apparently I was right in that this just doesn’t often come up as people don’t travel very much. Figures we’re the big exception.

Well there’s nothing we can do so will just have to deal and if we have a major crisis when we get home so be it. Hopefully it can hold out til then. Really don’t want to visit emerson hospital ER as was suggested as a last resort. They’re very bad with mental healthcare so I’ve been told by a trusted psychiatrist and are just a not great hospital in general.

So then my mom writes and asks if we can change the appointment at BCIL to Monday instead of Tuesday so we don’t have to go back and forth to boston and she wants it relaxing for everyone. Basically they don’t want to drive us. I wish she said so in the first place.

So we’ll just have to make due with a phone appointment. Really disappointed me as I’ve been really really getting mentally/ emotionally ready for this appointment getting awesome information on questions to ask/ things we might say we will need. Would be great to just be able to sit in the same room and just get going on all this. I literally have no idea when we can come back to visit because we have no idea where my parents will be moving to. Unless Jess and I stayed with a new friend. Would take awhile to save up for plane tickets but at least we wouldn’t be saving up for hotel as well.

So far no one has found either my suitcase or any extra one for Jess. So I guess we’ll have to buy one.

And then found out we have bedbugs again. On our floor not our room. In a room where people go out and bring stuff in off the street so of course it would be back! They’ve done an awesome job of keeping them out but with 350 people what are you gonna do?

I’ve been waiting so long for changes that they say will happen. The reorganization of this whole system which would likely make things a lot better. But I know that with the way IL is we’re lucky to be open at all.

I hate living here right now. I know everyone is busy with emergencies/ things come up/ each caseworker has 30 residents plus whatever is going on/ Jonathan is the clinical director and has to run this whole facility. But I’m tired of being 1 out of 350! I’m tired of the bad food and bedbugs, and people all crammed into one spot or another and the noise and the smell and just everything.

With Jonathan plain seeming not to care (Jess double checked today that he would be taking us to the airport and he said yes, I’m actually surprised he’s doing this after not doing so much) Anna zoned out half the time, understandably, and just this trip that staff say they’re a hundred percent for yet this place has made it ten times more stressful I’m just done!

From looking around online and talking with people it sounds like the resources in MA for outpatient anyway are way better than IL. I know it’s not perfect but at least it’s better. More creative anyway. But I know it will take a very very long time to get anything set up. I’m sure people at boston center for independent living hasn’t worked with people from out of state before. Yet again we’re a unique situation!

People are saying apply for department of mental health which we will but I know it’s a headache to apply for and you basically have to justify that you’re sick enough for the services and even then it’s a struggle.

But I guess you get more than you would on masshealth which I’m told not many therapists take.

So we’ll see what we can do. Will probably have to fill out a ton of housing applications though as I’ve said a million times I refuse to be in an unsafe situation!

And if this trip is any indicator the staff often through no fault of their own will take their time on this.

Just fed up and frustrated and I know I’m gonna hate it ten times more coming from an actual house/ hotel with a small amount of people back here.

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