I guess I'm rested, since I can't get back to sleep.
    We're blowing the pop stand on Sunday or Monday. The facility tells me that discharges don't happen on Sunday. That's okay with me.
    Yesterday I attended Mom's therapy sessions. I was suprised at how much she wasn't able to do, considering how long she's been there, but I'm not going to look back and run myself through the wringer wishing I'd gotten her out sooner. We'll just keep going forward. She can walk, some, and she can negotiate steps, haltingly. That's all we need to get started, here. From my experience with moving her around and offering my physical strength in her service, I know we'll be fine.
    Novabella's recent comment that reminds me of something I've been meaning to mention. When the intake nurse for Hospice conducted her extremely thorough and informative interview on the first evening of my mother's five day stay at the intermediary home (the one where she stayed for my "respite"...I still can't help but grin about the entire respite experience), she mentioned something that put my mother's last four years into perspective for me. As she was reviewing everything I'd told her about my mother's health since 1993 (which was quite a bit), surmised that my mother's cancer probably started about four years ago or thereabouts (as the last doctor to see her at the hospital also guessed) and considered what has been happening with Mom, healthwise, for the last year, that her anemia has become harder to control and her diabetes easier to control, she summed it all up with these words: "Tumors eat iron and sugar." Bingo. Although, at the moment, her anemia is doing well, this information absolutely fits the trouble we've been having periodically just keeping her hemoglobin in "the nines" let alone anything higher.
    Except for Thursday, I'll be participating in Mom's therapy every day until she's discharged. So far I've learned that I've apparently been figuring out rather well how to support her around the house without instruction. What I'm learning, now, are refining tips. I'm no longer concerned that I'll be at sea with her, even though the therapy didn't accomplish what I'd hoped nor did it play to my mother's capabilities, primarily because of her Something Fights. I know she won't have those problems at home, so I'm hopeful that Hospice will judge her worthy of three-day-per-week PT sessions and our home will provide the motivation for her to become a bit stronger simply because she'll want to utilize it in ways that are familiar to her. In the meantime, on Thursday, MPNP will be building a portable ramp that will make it easy for her to use the living room and, as well, go outside, when we have wheelchair days, which I expect will be more (and continually more) frequent as her life continues.
    As far as transportation is concerned, from here on out we'll use the pros, when necessary. There won't be any reason, really, for us to go down the mountain, anymore. She hasn't been particularly interested in "getting out" for a good year or more, even though we've been doing the epo runs without much difficulty. I'm thinking, if MPNP has the time, I might have him construct a simple platform we can use to get her in our car, but professional transportation is cheap enough for the few times she may want to get out.
    We'll both be relieved to get her back on home turf. I'll also be relieved that she'll be off that treacherous facility diet. I had a friendly face-off, yesterday, with one of the Floor Nurses at the facility about Mom's constipation there. She wanted to put Mom on daily Philip's or some other laxative. Many of the elderly, she says, need this "boost" because of their iron supplements and their "pain meds". I countered that Mom's been on high doses of iron for a long time without a problem, she's not on pain meds, and laxatives, daily or not, tend to make her hands and feel swell uncomfortably. "I do not want her on prophylactic daily laxatives. The problem isn't her meds, the problem is the diet and the fact that I'm the only one here that is handling her hydration correctly. You can't just put a pitcher of water in front of her and expect her to drink it. You have to coax her through it. I've been doing this, but I can't get enough liquid down her while I'm here to make up for the liquid she isn't coaxed into drinking when I'm not."
    So, we'll just work with what we can on that score, she may have to have one more suppository to clean her out before she goes, and then we'll get back on schedule when she gets home.
    I feel as though I cannot say this enough: Although facility nursing/aid staff tries their best and their best is very good, indeed, facility administrative decisions regarding diet, staffing and medications are completely treacherous. If you are going to thrive in rehab or, for that matter, in any kind of short or long term facility care, you pretty much already have to be healthy. Forget, people, forget everything you've heard about the necessity of Long Term Care Insurance. All that's going to do is pay for your stay...it's not going to guarantee you adequate care. It can't.
    Oh. Yeah. She didn't have a UTI. No surprise. What she actually has is what I've decided to call "Facility Pathology", which includes things like bad diet, poor hydration, lack of movement (in my mother's case I am not allowed to supervise her use of the walker at the facility, in order to prevent accidents because of her poor handling of it and my lack of certification) and the presence of numerous viruses and bacteria that play havoc with challenged immune systems. The cure for that is obvious. As well, a friend of mine, yesterday, suggested that she probably was discharged from the hospital too soon. That doesn't surprise me, either, but its too late to go back on that one and, anyway, one of my missions is to keep her out of the hospital and any kind of alternative care from now until she dies. Forget "respite". Although the care home was wonderful, for a variety of reasons having to do with Mom's and my relationship, which is our strength, respite was a bust. Forget about the Oxygen in the Airplane analogy. In case anyone hasn't noticed, we're not in an airplane. It's easier on both of us if I handle burnout at home.
    Long day ahead. Maybe I can get a little more rest before I hit the trail.
    Later.
- posted by Gail Rae @ 03:22   email  this post