Saturday, December 5, 2009

A very strange day

I had a lot of trouble getting to sleep last night, but once I did, I slept for a long time. I woke up a couple of times thinking I was up for good, but kept drifting off again until Marty woke me at about twenty after ten, since my home monitoring equipment goes off and has me check my blood pressure and oxygen saturation at ten thirty.

So I got a very late start to the day, and didn't realize how weak I was until I got up to go to the bathroom and had a lot of trouble getting back to bed. I was gasping for breath and felt totally exhausted, and Marty pretty quickly realized that it was not a day on which he was going to be able to get me to go out.

I called hospice and spoke to Louise, who didn't have much to suggest except the usual (take morphine, use the ABR gel, rest, and that she would see me on Monday). I just feel so discouraged as I get weaker and weaker. I just want this to be over.

And the big picture doesn't look so good either. It looks like Congress thinks it can squeeze health care savings not out of the billions of dollars made by drug companies and insurance companies, but instead from small home care agencies (like visiting nurse and hospice programs), which is absurd, as these programs operate on tiny budgets and save money by keeping people out of expensive hospitals and nursing homes.

Maybe I can mobilize some energy to write something about it for the op-ed page. I'd just need to update the piece I wrote a month or two ago. That's the only thing of use I can see myself doing right now. I'll have to see how much energy I have tomorrow.


  1. Judi,
    I would like to express my deep gratitude to you for your work in helping others understand not only hospice but the real struggles and challenges people are faced with when approaching the end of physical life. I believe one of your precious gifts to humanity is your ability to write and teach… thank you! I send you my heart felt empathy and prayers. Blessing:
    May your struggles lessen with each step you take
    May the gentle breeze lift your hopes and dreams
    May the strength of the sun warm your heart with courage
    May the glimmering of your beauty shine upon loving faces
    Take care dear one.
    Hospice Chaplain Randall

  2. Hi Judi,
    Hope today is a better day for you.
    Thinking of you lots.

  3. Judi- I have been a hospice social worker for 15 years and now manage a hospice. I have truly been touched by your blog...your honesty, the clarity, the openness with which you write is a treat for all who take the time to read. So often our patients can't articulate the loss of independence, the exhaustion, the bargaining (if I do this now then I won't be able to do that later), the feelings of hopelessness. Thank you for reminding me of what some of the everyday struggles are. Thank you for sharing so that others can understand. Sincerely!