Wednesday, March 4, 2009

How hospice helps

These coughing spells are extremely worrisome, so I was pleased with Kathy's attitude when she was here yesterday. "We are going to get this coughing under control," she told me. She started me on Plan A--cough medicine every four hours, whether I was coughing or not, and she already had a Plan B if that didn't work (an additional medicine). I guess this is the same attitude that cancer patients find so helpful when they come into hospice--they are told that their pain will be controlled, when often they have been suffering for a long time. It's that quality of life issue again--nothing is more important for the sick person than to know that they will get real help with whatever that person thinks is the most important thing.

Again, I can't help contrasting this with the mental health system, where often what people want is very practical stuff, like finding a place to live, and instead they have to jump through all kinds of hoops because someone else decides what's most important. That approach makes the person feel even less in charge of his or her own life.

In any case, I haven't had another coughing spell. I have been using the cough medicine, and I also need to do two nebulizer treatments a day (I managed one yesterday). For some reason, I couldn't sleep last night, which happens very rarely these days, and I got up for good about five-thirty. I was feeling pretty good, so I was able to go into the kitchen, leaving Marty to sleep, and have some tea and cinnamon raisin toast (I think this is going to be my standard breakfast for awhile--until I get sick of it), and read. When I heard Marty beginning to stir I went into the bedroom with the newspapers (getting all the way through the apartment and to the front step is a big excursion these days, and I had to sit and rest in the living room for a bit before getting all the way to the front door, and again on the way back), and we did the Times puzzle, which turned out to be one with an interesting twist and fun to do.

Nancy, the hospice chaplain, came for a visit and she, Marty, and I lounged on my bed and talked for probably an hour. A lot of what we talked about was chit-chat, but I've discovered that it's not necessary to focus on the "heavy" topics--things come up very naturally in the course of conversation, and we did end up talking a lot about support, the difficulties of asking for help, and my being able to give up control over details without feeling an overall loss of control.

Marty left a little while ago to run some errands, and I will probably try to take a nap and see if I can catch up with some of that missing sleep.


  1. I agree with Kathy completely and you are doing great need to be a hero any more.... be really NICE to you...You deserve it.


    Related to something I said a few weeks ago: as you can see from reading the blog, visitors really *do* make a difference. It's not only a good way to use time, but really does seem to energize Judi. So, don't hesitate to come visit, and those of you plugged into Judi's various networks, let your friends and colleagues know that they're [almost] always welcome and it's not a a depressing experience in any way. There's always good conversation and a decent bottle of wine! [And, while it's appreciated, you *don't* ever have to bring authentic New York cheese cake!]. Just give a call

  3. Hi Judi -- I've been following your blog for a bit. I admire the spirit with which you face each twist and turn on your path. The struggle you describe in finding the balance between independence and dependence is particularly thought provoking. Perhaps there is a balance to be found in letting go of some of the small stuff, so that you can continue to enjoy those activities that bring you comfort and pleasure. What comes most to mind at the moment is the routine of reading the morning paper and doing the crossword puzzle. Your "cast of characters" mentions that your grandchildren live upstairs. Maybe the older children can share the task of bringing in your newspaper before they go to school. That way, they are helping in a positive way, and you can enjoy the paper without needing to rest in the living room, or feeling too tired and needing a nap. A small change that might help. . .ses