(My Friday blog is out a day early – but circumstances nudged it out a day early because I had to write while this whole mess was fresh.)
So … I am stunned. I am frustrated. I am broken.
Quick update on those of you who don’t know the full story (and click on the ‘About’ tab on my website homepage and then ‘Amanda updates’): Amanda has been living in her own apartment for a year and a half now. She loves her apartment. We have staff that comes every day to help. At night, Amanda needs to wear an AVAP mask to remind her to breathe when in a deep sleep. She has been taking the mask off in her sleep. This is not good for her health and could lead to respiratory failure.
It has been our attempt to get her more staff so that there is someone there at night to check on her every hour and make sure her mask is kept on.
We first thought of moving her into a group home where there is twenty-four hour staffing. We were scared for her health and almost had her moved. Our gut told us that this particular home was just not the right place for her. We changed agencies and caseworkers to what we thought would be better services for Amanda – and our plea for help for Amanda and the urgency for her to have help at night started TWO MONTHS AGO.
We finally had the mandatory ‘budget meeting’ to help get things moving. (Why didn’t Amanda’s caseworker have us do this 2 months ago?)
In the meantime, we are down to only one staff worker who is wondering if she will even still get paid until the budget gets passed. AND it means that I am the other staff for Amanda right now. That’s okay. I’m her mom and of course I’ll help out with my daughter as much as I can. But keep in mind that Amanda loves her apartment and life independent of her mom and dad and is happy to have others around her – not her mean old mom all the time. AND keep in mind that I have already been taking care of her for over 30 years. AND keep in mind that I have been spending two to three nights a week at Amanda’s apartment to make sure she keeps her mask on. Like last night. I sleep on the couch and my phone alarm wakes me every hour so I can go check on her. It’s not a very good night of sleep – not getting any REM’s. And then I got myself to work at 6am.
In two weeks and a couple of days I am supposed to go to Guatemala on a mission trip with my church. The plane ticket was bought a long time ago and we’ve been planning this for a while. That’s why I started TWO MONTHS AGO to make sure I had Amanda all safe and taken care of.
NOTHING HAS HAPPENED YET.
I call Amanda’s caseworker almost every day – and mostly I get to leave messages. I try to convey my frustration and suggested that the urgency of this matter that I spoke about 2 MONTHS AGO is now getting to be an emergency. Well Miss Caseworker called her supervisor and Mr. Supervisor said, “If it’s an emergency, then you need to place her in a group home.”
Amanda would be devastated if we suddenly threw her into the group home. What do we do with all her stuff in her apartment? What about the lease we have for the apartment? Does he want to put her in the group home for – how long? A week until we work things out? Two months? And then move her back? Would Mr Supervisor take any of his family members and make them move temporarily like that? And the group home workers – do they know how to take care of Amanda? NO. They would have to be trained. How much time would that take?
AND YOU THOUGHT THAT OUR VETS HAD IT BAD WITH THE MEDICAL CARE OUR GOVERNEMENT WAS (NOT) PROVIDING THEM?
This is just more government Bullsh*t. I’m sorry.
Ted and I talk all the time – that there HAS to be other parents like us with special needs adult children who, like us, just want a safe and happy place for them to live. Are you guys out there? We dream that if we win the lottery, we would start such a place. It would be an apartment building with stores and businesses on the main floor – potential jobs for some of the abler residents! And we’d hook up with a university that could have nursing students, PT and OT students, and psychologists that could do internships with the residents – provide care and LEARN what life is really like for this population. It would be a community with activities and services for everyone.
Is there such a place already?
Would you like to help us start one?
In the meantime, I can only ask for prayers that things will work out for Amanda.
Again – I ‘m sorry folks – but I am trying to cope with the wake-every-hour night I had and a full morning at work – followed by the rotten not-so-helpful communications with Amanda’s caseworker.
Please pass this on … And please offer your viewpoint or suggestions.
And please pray. Maybe this is part of a bigger plan that God has not revealed yet to me.