Got a few hours but not as much as I need ... up to do busy work, rather than lie awake in bed. Was greeted by a very supportive email from one of Harriet's friends ... despite my rant yesterday, most of her friends are great, they either support me explicitly or they stay out of the way until later, when the situation improves. And the ones who screw up obviously love her but just don't get it.
With that card, I think part of the problem was that it was so long, by the time H got to the end, she couldn't remember what was said in the beginning. It was really a very sweet love letter to an adult mind. But H not only has short term memory loss but can't make connections. Her two questions, after asking me to explain this card to her, it had upset her very much, were ...
why is she telling me these things?
doesn't she like me any more?
I said, she loves you but she's a terrible writer. Lucky she wasn't in my class at PSU, I would have flunked her. A smile! And we could move on to other things. But I was not there when she got the card, she had been upset about it for an hour or so before I got there to see her in a terrible state.
All this breaks all of our hearts. But she can get better if she can stay out of the "psychic drain" that she felt at the end of yesterday. And when she is home, Pam and I can protect her from surprises because we'll be with her 24/7.
But the hospital, too, could do a better job. They need a clear, simple brochure to give to anyone who wants to visit a brain injured patient. Also, they need better coordination. In the beginning, a nurse told me, only one or two visitors at a time, and her doctor was there and intervened and said, No, no visitors until further notice. I have yet to get further notice. But the one or two is standard, so the computer downstairs says that! If you come to the desk and say you want to visit Harriet, there is no problem. That should have been flagged, the computer should have updated the rules that the doctor changed. How the hell is a friend to know if the front desk says, ok, only one or two at a time and gives them the room number? You can't blame a friend for what really is a hospital mistake, or lack of coordination.
I really will embrace being in control so that kind of shit will not happen.
One of the first things I was told when they learned I was the husband, I would be the primary caregiver, was this: managing her friends will be a great challenge. Well, they nailed that! But again, okay, if this is a great challenge, in case after case, why don't you do something to make it less of a challenge, why don't you do something to educate friends better so they won't make mistakes out of love?
Hope I can get a few more hours sleep before I go to the hospital. I have to leave after breakfast, I have very full days today and tomorrow with out of hospital chores, things I can't pass on to someone else.
A new day. Clean slate, yesterday was yesterday, let's do better today.
