Sunday, December 6, 2009
We have featured blogs here from social workers, doctors and nurses in the hospice and palliative medicine field, but we have never featured a blog written from a hospice patient. Judi Chamberlin has been writing "Life as a Hospice Patient" and just had her one-year blogging anniversary December 4th. She has led a very active life including being an activist in the psychiatric survivor movement since 1971 and author of "On Our Own," (available from the National Empowerment Center (http://power2u.org/). One of her goals is to ensure that people labeled as "mentally ill" have the same rights as others and to prevent their marginalization and discrimination. Her activist background has been continued with her blog about her hospice experience.
Her hospice story was even featured in the Boston Globe because her insurance had reached it's lifetime $5,000 hospice benefit limit.*
Some highlights from Judi's posts:
From the post "An even stranger day":
Meanwhile, I was attempting to manage my symptoms of feeling generally awful, and I used enough morphine, ativan, and ABHR gel to finally start feeling better, with no more pain, and just a slight amount of spaciness, which seemed like a reasonable trade off. Combined with the general pattern of feeling better as it gets later, I'm feeling better right now than I have all weekend. Yesterday I needed resting chairs to get from bed to the living room, but today I made it without the chairs, and I've gone back and forth to the bathroom as well without getting totally exhausted (a big change from yesterday).
From the post "...and more sleep...":
Marty, Marie, and I had a good conversation on Tuesday, in which I expressed my fear of hitting a plateau in this extremely weak state and just lingering here. This is the worst thing I can imagine, growing more and more miserable and frustrated as I can do less and less. And today we met with Nancy, and I talked about the same fears. I am just so weak and feeling so blue. Even doing simple things, like writing out some checks, feels like too much. I just want to lie here and watch TV or read the paper or do crossword puzzles.
I keep drifting off into a state of semi-sleep where I can hear the TV or the conversation in the room and think I am participating but of course am not making any sense. I'm tired and bored and frustrated and just don't want to go on like this much longer.
From the post "Hospice--patient centered care":
The hospice movement attracts certain kinds of people, who find it rewarding to work with dying patients, although I suppose many people would not find it appealing work. But in all my experiences with hospice, both when my dad was a hospice patient, and now my own, I have found a group of people who are upbeat without any kind of false cheerfulness, but who instead can help to find a positive aspect in any situation.She writes very openly allowing us to see her raw feelings and honest reactions to the people around her. Go read through Judi's blog and leave a comment and let her know someone is listening.
When I first came into hospice, I was shown a diagram of patient-centered care, with the patient represented by a big circle in the middle, surrounded by smaller circles standing for family, nurses, social workers, etc., all of whom are there to help the patient achieve his or her goals. So when I said I wanted to go to Omaha, many people at both agencies had to do a lot of things to make it possible, without any sense that they were going out of their way or doing something "extra" or unnecessary--if it was something I wanted to do, hospice was there to make sure it happened.
*That's a story for another day.