7/25 - New hospital stance, group home

Beth and Barbara made today’s visit. Chelsey was still la-la at times but somewhat more grounded than the last few days. She’s calm and doesn’t mind being in the hospital much. Beth, however, is drained. She wept a couple times today and could not wind down to sleep tonight. The uncertainty and stress is taking a toll.

The trigger today was not a change in Chelsey’s condition, but the lack thereof and a new hospital stance. The social worker passed along comments from the doc that Chelsey’s about as stable as she’ll get in the near future. They realize she’s not healthy and still requires monitoring, but they do not think she needs lockdown-level care any longer. She may or may not improve further, but they’re not expecting any significant further progress that would require their specialized care. They want to discharge her very soon.

Although we agree she may not need lockdown, she still needs more than we can handle. She still thinks a lot about suicide, she’s delusional, and she has not been stable and coherent for more than one day at a time. She’s sleeping only about 5 hours a night, and her eating remains erratic. Delusional thoughts made her use the car as a restroom on one of our two field trips. Her delusions seem likely to lead to actions that will risk harm to herself, others, or property. She’ll need virtually constant monitoring. We tried that for three nights at the beginning of the crisis, with devastating, unsustainable results. Nope, no can do, not a chance.

The hospital must discharge her soon, but they must discharge her to an appropriate care setting. Since we can’t provide it at home, the scramble is on to find a group home or step-down facility. Beth cried on calls with Chelsey’s case manager at the DDA (Dept of Developmental Disabilities) and the treatment manager at the agency arranging services. They’re rewriting the plan, starting an urgent authorization process, and looking for openings. Temporary placement in a respite care home is a likely first step while we wait for a long-term opening in a group home tailored to those with disabilities (hopefully with some expertise relative to autism).

This feels like a renewed crisis to Beth because of the urgency, uncertainty, and the idea of Chelsey living away from us long-term being thrust upon us so suddenly. Still, Beth also commented that this feels absolutely right, that this is the only option available that could work. I agree, and I feel at peace about it. We have periodically considered group homes for the distant future, but having it imposed on us in a crisis may have been the only impetus that could have finally moved us to act. In the long run, we think a group home may be best for all of us.

There will undoubtedly be issues, kinks, and considerations, but this seems like a hopeful path to a sustainable future. Aside from worries about even finding an available home within driving distance, our biggest initial concern is potential neglect and poor quality of care in group homes. We’ll keep crossing bridges as the gaps appear. I’m learning to hold very lightly to plans and formerly firm conclusions, but finding a good group home is our new short-term goal.