Wednesday, February 25, 2009

Dependence and independence

In a comment to my last entry, Susan wrote: "So what does your emotional difficulty with needing help mean to the model of the mental health system? 'Independence' has never meant doing everything for yourself, sick or well--none of us really can. It has always meant deciding what was to be done, when it concerned you, and making choices and having your preferences respected. What you retain is the direction and the control at the core of independence. Or am I clueless?"

These are, of course, issues that I have been struggling with as I become weaker and need more help. Last week, when Ann came on a day when I wasn't able to do much, I made the foolish mistake of telling her to go home. I had been planning to have her help me cook something, which I wasn't feeling up to doing, so instead of being able to alter my expectations and have her do a bunch of things she could have done without direction (emptying the dishwasher, putting other things away) I decided I didn't need her at all. This was certainly a very poor attempt at being "independent."

Ann was here again yesterday, and I was having a good day, so we were able to cook together. But I also discussed with her what had happened the previous time, and how she could help me by pointing out when my trying to be "independent" was actually working against my own needs. One of the reasons I think things will work out with Ann is that she is someone with whom I share values--she's not just a hired pair of helping hands. Having someone who is dealing with recovery from serious mental illness, with whom I can discuss things openly, is as important, or maybe more important, as just doing tasks.

Which brings me back to hospice philosophy, and how I want to see those same values in a mental health system which still values compliance over independence. When I moved myself out of the doctor-based medical system and into hospice, I was deliberately choosing quality of life as my prime value. Going in and out of the hospital, having tests and procedures ordered by doctors, was a loss of control that eventually seemed to me to have reached a point of diminishing returns. That's why, when I shifted into hospice care, I felt such a sense of peace. It's fine to undergo all that medical stuff if it has the ultimate result of improving quality of life, but once it became clear to me that it didn't benefit me, it felt good to give it up. Just the thought that no one will be sticking any more needles in me--in the hospital, I don't think more than four hours would go by without someone having to stick me for something--feels so good!

I'm going to have to learn how to transition to being more needy, more dependent on others, while still maintaining the ultimate "control" that whatever happens is because it's something I want. If I want to remain at home, which I most certainly do, than I will need to accept more help and recognize it not as a loss of control but as helping me to keep the ultimate independence of having my basic decisions recognized and supported.

The mental health system has learned to speak the language of recovery, but without really accepting what it means in terms of changing practice. Helping people to recover means helping them to fulfill their own dreams, moving away from compliance as a prime value and toward a much more complex kind of service that is individualized and which allows people the dignity of risk.

Yesterday was a good day. I felt strong. When Ann arrived we spent more than an hour cooking a big cassarole scalloped potatoes with ham, a recipe I saw in last week's Boston Globe and immediately knew I wanted to eat. I'll be eating it for the next few days, but I don't mind eating the same thing every day if it's something I like, and this is comfort food for me. Ann also helped me fold and put away some laundry, and we also talked about she could be most helpful to me as I become weaker.

In the afternoon, I had an e-mail from my friend Val--she and her colleague, Steve, had been here the day I was so sick and couldn't eat, or even get out of bed--suggesting that they reschedule for that evening, and it worked out great. Val arrived with a bunch of good stuff from Whole Foods--eggplant parmesan, barbequed chicken, Caesar salad, broccoli, and ice cream. Steve arrived and we started to eat, as Marty had said he'd be a bit late, but he got here just a few minutes after we had started eating, and we had a lovely time talking about all kinds of things and drinking some wine. They left shortly before nine as they wanted to get home to watch the president's speech.

Marty and I watched the speech together, but I was tired and toward the end of it drifted off to sleep several times. But I did hear most of it--Obama was very impressive, outlining the depths of the financial crisis we are in, and his proposals to turn things around.

Unfortunately, this morning, for some reason, I'm very short of breath and it's hard for me to do much. It's frustrating, since I was feeling so good yesterday, but I just have to roll with it.


  1. I am so glad to read this, Judi, as it helps me to know how you are feeling about your independence/dependence and ways in which I can help when I hear from Marty.

  2. thanks for this Judi, it is a great example of how the recovery principles work in practice, and hospice care really does equate to psychiatric care in that we are talking about choice, empowerment and quality of life, not 'cure'.

    Some of my friends in the UK have started an 'anti-recovery movement' because 'recovery' has been almost completely hi-jacked by the system, so it is good to hear your take on it.

    Also, your dinner with Marty and your friends sounds lovely, wish I could have been there! Keep on doing what feels good, you've earned it many times over!!!! (not that we should have to earn a nice time with friends!)

    I remember one occasion, the first time I visited the NARPA conference with you and Rae, I think it was, when we had dinner with Leonard Roy Frank and some other survivor leaders, and it remains one of the happiest memories of my life, when I didn't want to be anywhere else or with any other group of people, and I felt totally privileged. It was entirely due to you that I got to come to the NARPA conference, so thanks a million for that :-)



  3. What an honor, for "Ann". Once again I myself am inspired to look into doing hospice work. To make someone more comfortable in their end of life and to be a listener of one's end of life thoughts.... I wonder if I could handle it. It sure has tugged on me for many years.