Ran lots of errands today, saw friends, made phone calls, met Hospice social worker, cousins came over to bring food. Makes me wonder how I work and get anything else done!
I am so naive to think Hospice is free. I know I posted earlier about this, but I'm amazed that their services "require" insurance or the family pays. They don't hound you to pay but nevertheless, the bill is there. There's going to be a huge gap when John's deductible starts over at the beginning of the year. Plus, his insurance's end of life care will only cover about 38 days, which unclear to us, began 5 days ago, at the time of admission. And the days are spent/used/claimed consecutively whether you use their services or not. Which means we just wasted 4 days. Unfortunately, the days are not service days. Which means we'll get 16 days in 2010, then come Jan. 1st, we'll pay because the deductible hasn't been met. So, does that mean we lose the other 22 days? Do we get 22 days before the deductible has to be met? They are thinking about putting John on 'self-pay' so he can get medicaid to pay for it, provided I get him on SSdisablility by then. [friend in high place can make it happen]
We had long discussion of this with the social worker and the financial lady on speaker phone trying to sort it all out. Still isn't sorted out.
John was his usual jovial self while the social worker was here. The guy asked if this was his usual demeanor. "Yes," I said. "He's a laugh a minute." By the time the session was over, John and I were so stressed, we almost had our first fight. He says I don't tell him things I do; that I make decisions and have conversations with people and don't tell him. He even cussed. I do keep him informed and let him know what I do and what's said. He truly doesn't always hear me. What he was mad about was the disability. I told him I haven't told him anything about it because I haven't gotten it done yet. It seems to be the one thing too much. We have the letters from his drs. After we talked a lot about it and got it clear, then we cried. It was a stressful afternoon. I'm SO glad I'm home with him these 2 weeks.
Hospice nurse will be visiting for the first time tomorrow morning. I'm so tempted to get every service I can before the end of the year, but I don't want to be spiteful. Our 'team' is very nice and helpful and have gone out of their way to see to our needs.
The tumor bulge has a spot that drips blood. I think it's where a stitch is. Hopefully the nurse can make some sense of it, and help us bandage it better. The ace didn't work too well because in the night, when John would roll his head, it would slip off. Right now he's using an old stretchy headband of mine. I told him he looks like he's ready to run a race. Looks like a sweatband from the '80's.
Also tomorrow, one of the management companies John has done tons of work for is bringing dinner/lunch/food. I'm learning to accept.
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