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Active member
Feb 24, 2006
Good evening everyone--

Last night, Dad entered a respite facility for hospice patients. They're planning on keeping him only 5-7 days max, and this was in the works for a while before a bed came open for him. So far so good, except for the middle of the night last night. No one seemed to understand what he needed. I spent 4 hours there this afternoon, had a long conference with the social worker, a conference with the hospice manager about his nighttime needs (re-positioning, pain from the mask, anxiety and restlessness, agitation) and she said she'd be sure to leave specific instructions. They have one other ALS patient there right now, and they've had many in the past. I feel confidant in this place--got a good feeling about it as soon as I walked in. They will evaluate his palliative needs, nothing more, although I tried to point out that the difficulty in communicating has a direct bearing on his comfort because his hired caregivers don't understand him, don't understand enough English, etc.

Dad has a very beautiful blooming cherry tree right outside his window, which looks onto a pretty garden. Really quite peaceful.

Has anyone else ever gone to any facility for a short visit? What made it more bearable?

I hope that the onset of spring is helping to lift everyone's spirits. Even you folks up north must be getting at least a little hint. Be well everyone!

Hi Liz. Up here in beautiful rural Ontario it was about 65 degrees today but it's raining now. I had to go to a rehab hospital for a week in Jan of 2005 to get my bipap. There were a couple of long term als patients there and the one thing they did enjoy was getting out in the fresh air and sunshine when possible. I got to talk to a few of them because they were on my respiratory floor because of vents etc. I think Virginia is a little warmer than here so if you can I'd try to get your dad out as much as possible. I'm sure some of the others here can offer more advice too. Take care. Al.
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