Saturday, October 24, 2009


We had a nice plan for today, attending a showing of a movie that's a part of the disability film series being put on by the Cambridge Commission on Disabilities, a classic of the disability rights movement--"When Billy Broke His Head and Other Tales of Wonder." But I had a rough night, waking up coughing and gasping for breath several times during the night, and then waking in the morning very weak and short of breath. I dozed on and off into the late morning, then managed to drink some tea but didn't feel like eating. I finally had a chicken salad sandwich in the late afternoon, after asking Marty to make it several hours earlier but then feeling queasy when I thought about eating it.

As happens so often, now that it's evening I'm feeling better and stronger. It's important for me to maintain my energy so we can leave on Wednesday for Omaha. Everything appears to be set; the tickets have been bought by the organizers, and we've spoken with the airlines about disability accommodations. I am able to take my portable oxygen concentrator on board, and they have promised that I can ride my scooter to the door of the plane, and that it will be last loaded and first off, so I will be able to get on it when we deplane. That's how it's supposed to work, anyway--we will see how it goes in practice. In each case, we have to take a commuter plane on the leg that involves Omaha, which probably will require my climbing a few steps into the plane, which I can do if they preboard us and give us enough time so I can do it slowly.

I am really looking forward to this trip. It will be good to be away from the various tensions here, plus I will have a chance to see a number of people that I haven't seen in ages. Our room is in the conference hotel, so I can take part in as much of it as I have the strength for, and then relax in our room where I'll be able to meet with people informally. I asked the hotel for a handicapped accessible room--the best of these have roll in showers, although the more usual arrangement is just extra grab bars, which isn't too helpful for me. I can't take a shower unless I can be sitting down, as I get too tired otherwise.

I'll need to check on Monday to see if hospice has made the necessary arrangements for me to be covered by another hospice program while I am there. Last time (the trip to the Catskills which we never actually took) Lauren arranged everything, but she has been out sick all this week and I hope Louise has been able to get the information she needs to set things up. When Joan, the social worker, was here on Friday she said that she is quite pleased that I am going on this trip, which she thinks will be very good for my morale. I quite agree--I'm so sick of sitting here and staring at the TV, and I don't have the mental energy to read anything more than the newspapers, and my New Yorker and Vanity Fair. I may take a book with me on the trip to see if I can read something light.

I hope I can get some restful sleep tonight.


  1. I had no idea that a hospice patient could set up hospice at the place they are vacationing to. Wow, that is actually quite fantastic!

  2. This is just one of many reasons why I find it so sad that most people enter hospice care only in the very last stages of dying, when really all that hospice can offer is to make sure the person is comfortable (of course, that's a very important thing). But hospice can get involved when the doctor makes a "guesstimate" that he hor she has left than six months to live, and these periods are renewable. I have gained so mmuch from being a hospice patient throughout my dying process.

  3. Hi Judi,
    Your trip sounds excellent.
    Good to know more about what hospices do, I too thought they were just for the final stages.
    Shame that death is such a taboo subject.
    Have not been visiting much recently been too absorbed in my own things.
    Thinking about you.
    Have a good day today.