Tuesday, February 17, 2009

My weekend away (Part 2)

Sunday morning we lazed around the hotel room. Marty took a shower, and while he was in the bathroom his cellphone rang. He came out of the bathroom, just missing the call, looked at the caller ID and said it was a number he didn't recognize. We didn't think more about it until an hour or so later, when my son-in-law Jim called me to say that somehow the button on my Lifeline machine had been pressed (the only thing we could figure was that somehow the cat did it), and when I didn't respond to the page, and the Lifeline service was unable to reach either Julie (my daughter--as it turned out, she was in the shower too and didn't hear her phone) or Marty, they had called an ambulance and a police car! Julie and Jim heard the commotion (they live upstairs from me in a two-family house) and were able to explain to the emergency personnel that I was away and not lying on the floor helpless.

Getting all the equipment out of the room and back into the car took awhile, and, once again, we got lost in Providence, which seems to have no signs directing people to the interstate highway, but we finally found it. We had the oxygen machine plugged into the car charger, which is supposed to charge the battery, but when we stopped for lunch, at an Olive Garden restaurant just over the Massachusetts border in Attleboro, we unplugged the machine to take it into the restaurant and discovered it had no charge at all, and was emitting an emergency signal. We tried plugging it into the wall, but that didn't work either, and the machine continued to beep. The restaurant people were terrific--they kept trying to get the machine started (it would run for a couple of minutes at a time, then conk out again)--and they decided to call the rescue squad. Needless to say, I was panicky and scared and gasping for breath. The fire department guys who showed up were great--they put me on an oxygen cylinder, and said we should just take it home with us and get it back to them at some point (we were probably thirty miles or so from home).

With all this, by the time we got home we were both exhausted, and I was wondering whether it had been a good idea to go on the trip. I went straight to bed, and asked Marty to set up my bi-pap machine (which I sleep with and which pushes air into my lungs), and promptly fell asleep for several hours. I slept through the night as well, but when I woke up on Monday morning I was feeling extremely weak, and was really scared that I had permanently depleted what little store of energy I have. But by mid-day on Monday I started feeling a lot better and stronger, and began to think that it had been a good idea to go away--that the change of scene had done us both a lot of good.

While I was lying in bed, one of my cats was sitting on the shelf over the radiator in the bedroom, which is where the Lifeline machine is, and he bumped into the machine and set it off, so I saw how easy it was for this to happen. At least this time, when the voice came on saying "What's your emergency?" I was able to tell them that I was fine and that the cat had done it, and the woman who was answering the call said, "As long as you're all right." We have now gotten things rearranged on that shelf so that the machine is well shielded from the cats and I don't think there's any way they can get to it, but I'm glad I saw it happen.

Today has been a pretty good day. Kathy, my hospice nurse, stopped in this afternoon, and the first thing she asked was how the trip had gone, and she was quite supportive of my conclusion that, despite all the difficulties, it had been well worth it. Nancy, the hospice chaplain, called today, and she will be visiting tomorrow. Talking with her has been really helpful, and I'm looking forward to seeing her. I have also asked for a new volunteer, as the volunteer who was originally assigned to me has only been able to come once in all these weeks (first he was sick, and then his wife had surgery). My dad was a hospice volunteer for many years (before becoming a hospice patient at the end of his own life), and I know what an important role a volunteer can play, so I'm hoping they can find me someone who will visit regularly.


  1. Hi Judi - In the course of describing your emergency message setup, you mentioned that your daughter Julie (and her husband?) live above you. I guess I fall into the category of persons who have known you for years as a fellow advocate but never really got to know you well on a personal level.

    So, believe it or not, I did not even know that you had a daughter! I would love to hear more about Julie, and how she fit into your career as csx leader and advocate. As you may know, I have a daughter, Meg, with whom I was denied custody because, as the judge said, "someone who has had ECT treatments should not have custody of a child."

    So this has been a painful issue for me and for a lot of other psychiatrically labeled people, and I would like to hear your thoughts about it. I would like to hear Julie's views and experiences, too. I know that Meg has respected and admired my work as an advocate, but still there is a distance between us that will never be resolved.

    Thanks, Sally

  2. Hi there Judi. The trip to Providence probably did you some good, despite the problems that it entailed. Your description reminded me of what the experience of living in New England was like, even though I haven't been there in almost 30 years. I remember a wintertime driving trip I took with you and two others -- I guess we were all "activists" -- from Boston to Hartford, Connecticut, to attend some event of the Mental Health Association there. Anyway, I think it's good that you got away for the weekend.

    I wouldn't have known that you had a daughter, either, except that I think I read some reference to Julie in the "Acknowledgements" section of "On Our Own". Thanks for writing this blog.