In response to the very much appreciated comment...
...left by Patty McNally Doherty on the immediately previous post:

    Ah, Patty, you said much that I intended to say but was too caught up in my anxiety to remember. You are right about the staff. Despite the fact that they are overworked and underpaid (including the RNs and FNPs), everyone tries very hard, everyone keeps it together. Well, except for one, yesterday afternoon, a new one to the facility who started out with excellent intentions and then became more and more flabbergasted and frantic as the evening continued. I forgave her without question and tried extra hard to work with her. I felt sorry for her.
    I have, indeed, on a daily basis, been considering pulling my mother out of the facility early and just going with whatever hospice provides in the way of therapy and in-home help and filling in the gaps on my own. I continue to leave my mother there, day by day, though, because, overall, she is improving (although I haven't checked on her yet, today) and the therapy they are providing includes stuff that I know I wouldn't be able to be accomplished at home because of lack of space and some very sophisticated, very large pieces of equipment that are doing my mother noticeable good. Also, she performs very well for the therapists and not so well for me, which, I know, is typical of the relationship between caregivers and care recipients, no matter what their alter relationships are. It is this edge that the therapists have over me that I realize still trumps her being at home. I rather believe, though, that, one way or another, one more week will do it, whether the facility thinks she's "ready" or not. I just want to get her reliable leg strength to the place where we can take it from where she is, come hell or high water. I've already seen that this is happening.
    Of course, all of that will be trumped if she is, physically, at or below where she was yesterday. Then, I am going to start making noises about having her pneumonia status followed up, maybe even transferring her back to the hospital for another chest X-ray, certainly putting her on another course of antibiotics. I am packing both furosemide and metaclopramide in my purse, today, in case I deem that she needs either. I will, of course, consult with the nurses, but it takes awhile for an order or discontinuation for this drug or that to be processed and delivered at the rehab facility. If necessary, I will work some sort of a deal out with the nurse on duty, today, who is, as have been all the nurses, incredibly accommodating in regard to my medical knowledge and opinions regarding my mother, and sign off on removing responsibility from the facility for whatever I give or do to my mother. At this point I figure that the facility isn't actually doing any better a job than I could do.
    The reason I am signing my mother up for hospice so early in her lung cancer episode is that I am determined to make sure she dies at home. I'm hoping that this rehab facility is the last facility she will be in and that she will make it out alive in a week or so. I have already been VERY impressed with the hospice organization I picked. They've already performed miracles for my mother and me. I have also been assured that I can pick and choose services and, if we find it hard to work with some member of the staff or other we are not stuck with that staff member.
    I am absolutely four-square aware and in support of everything you said in your comment about facilities, both medical (hospitals) and rehabs...have been for some years, in fact, since long before my mother had her first rehab facility experience. I knew, going in, this time, what was likely to happen and I've pretty much been right. Although the exhaustion of keeping up with my mother's stay is hard, it isn't as hard (although it's close to it) as it was when I was traveling four hours a day to see her and keep up with treatment.
    It's funny, because on the day of my mother's first planned discharge into rehab, which was also the day her pneumonia was discovered, I was talking with one dynamic and very well meaning case worker who'd been assigned to us through the hospital. I started to make a comment that began, "Look, I know our medical system in this country is broken..." and I heard her clear her throat. I knew she intended to step in and argue the point, but I was quicker and continued, "...because of specific things that have happened to my mother." From that point on I enumerated times, dates and incidents, in some cases mentioning the names of specific personnel, starting with the hospital stay in which my mother was then ensconced and going back through all her facility stays and doctor visits of every type. I rattled on for about five minutes. At the end, the case worker said nothing. This is the value of keeping a journal. Not only does it get the word out there but it keeps my detail ducks all in a row so that when I counter the attempts of people trained in PR to put a happy, or at least a philosophical face on what goes on in this country in the name of medically oriented care, I am far from vague in the examples I use. I can even refer those questioning our experiences to names, numbers, addresses, lab reports, etc. It is impossible for anyone to argue against the facts surrounding my mother's medically oriented experiences.
    So, I continue. I slept through the alarm this morning and am getting a bit of a late start. I've shoveled down some yogurt, some coffee, wiped the sleep out of my eyes (the shower will have to come later), apologized, yet again, to the kitties and I'm on my way.
    If I fail to report daily it's because I'm so caught up in the facility dance that I can't find a graceful way to exit. And, yes, I will describe the scene outside my mother's window...it's rather like sitting on a porch, gossiping about the neighbors who pass and speculating about the structures and greenery that decorate the view. It's one of the few things that keeps my mother's spirits up.
    Later.
- posted by Gail Rae @ 08:47   email  this post