Catching Up #1
    Some posts ago I mentioned that I wanted to post about some discussions that the Hospice Nurse and I have had over the last two visits. This post covers one of those discussions.
    One of my concerns has been that my mother would outlive her Hospice prognosis and, in being evaluated for a continuation of Hospice, would "fail" to qualify. I've had this concern because my mother seems to be "declining" so slowly that her "decline" is almost imperceptible.
    Our Hospice RN wanted to know if any biopsy had been done in order to reach the initial determination and I told him that none had. During our discussion of this at the first of the two visits I asked if there is such a procedure as a needle biopsy that could be performed on her, if necessary. He responded that, yes, there is. I mentioned that I would be amenable to this type of biopsy on my mother.
    In the interim between visits I wondered why a needle biopsy, at the very least, wasn't done on my mother once the CT scan showed what appeared to be clear evidence of a tumor. So, as usual, I researched needle biopsies of the lungs. As I said to our Hospice RN when I told him, last week, of my research, "The Hospital made so many mistakes when they were treating her for what turned out to be pneumonia that sometimes I think, wouldn't it be funny if the diagnosis of lung cancer was a mistake?!?"
    First of all, there's an excellent chance that my mother would be a poor candidate for this procedure because of the pain involved. The pain isn't, as I understand it, unbearable, but is sharp and definite. Although my mother used to react to pain stoically, now, even when verbally prepared for it, she almost always reacts physically. This isn't a good thing. Secondly and even more seriously, lung collapse is a frequent side effect of needle biopsies on the lungs. To quote Wikipedia (which is the less technical of all the research articles I accessed): "...collapsed lungs are more frequent and more serious in patients with severe emphysema and in patients in whom the biopsy is difficult to perform." Describes my mother to a "T".
    So, last week I told our Hospice RN that I have reversed my position on needle biospy and would not approve it, and told him why. He didn't counter me. He's a great RN. He sits back, answers my questions, no more, no less, takes in what I have to say, then adjusts according to what I discover and what I have to say about where my contemplations of these discoveries lead me. This, by the way, is the reason I refer to him as "our" RN. He is a wonderful resource for me as caregiver, as well as for my mother.
    In response to my obvious (but, gratefully, low level anxiety) about her lack of fitness for the usual Hospice qualifying procedures and what this might mean if my mother outlives her Hospice prognosis, he mentioned that cancer diagnoses are given a lot more leeway in Hospice, primarily because each occurrence of cancer tends to be unique. He continued that, if necessary, another CT scan would be performed to document growth of her tumor. Considering my mother's lack of fitness for general anesthesia, a biopsy requiring such would most likely not be required. Considering what I'd discovered about the dangers to my mother of a needle biopsy of her lung, he understood why I reversed my position on that procedure.
    I'm very pleased to know that Hospice is much less likely to "go by" any kind of "book" in regard to keeping cancer patients on Hospice. Hospice medical care is exactly what she needs. It's exactly the kind of medical care she's needed for some time, in fact, and it is a relief to me to not have to fight the medical establishment for it any more. It's funny, too, because our Hospice RN mentioned to me as he left, last week, that it's not uncommon for his colleagues to wonder out loud why his patients don't decline. Although he answered this with a mere shrug, my guess is that he has a lot of cancer patients.
    He also confided to me that, so far, Mom (and I) are "easy" because my years of medical advocation and caregiving have prepared me so well that I can handle a lot of things between Mom and me without outside intervention that are new and confusing to lots of caregivers. As I think about this, I realize that many, many people who are managing a loved one under Hospice are probably often caregiver "newbies" and are unprepared to think about either the death of their loved one or the care that their recipient might need. That hadn't before occurred to me. Last week, though, a blip occurred in my ability to handle many occurrences without outside help. At the moment, I can't remember what it was, it was that minor, but I called our Hospice RN and left a message to have him check back. Then, I calmed down and handled the situation lickety-split. I felt like a dope and apologized to our RN for calling. He told me that, throughout that week he'd gotten lots of similar calls involving people freaking over minor details of care...he blamed the moon. So, as it turns out, I'm a bit more comfortable, now, about the possibility that I might misjudge my abilities, from time to time, courtesy of the moon, and put in an occasional unnecessary call for help. That, as well, is a relief to know.
    Two people I know have suggested, when I've discussed my anxiety about my mother's overt lack of very obvious decline, that I should lie about what I observe in order to keep her on Hospice. But, you know, aside from the fact that it would be difficult to do this considering how often Mom is monitored by our Hospice RN, I have a natural negative response to the idea of relaying information that isn't true, as this could alter treatments in a way that would not be to Mom's benefit.
    Oh, one more thing. Happened today. I have to set this up a bit. At breakfast this morning Mom and I read a "Dear Abby" letter sent by someone who wanted to know how to handle a hypochondriac. "Abby's" response was to tell the culprit, the next time the writer saw her, how "horrible" she looked and how awful she must feel. "Abby" assured the writer that the hypochondriac would "love her for it," thus becoming much more manageable. Mom and I spent a fair amount of time reminiscing about her hypochondriac sister-in-law, remembering that, indeed, this woman always responded favorably to being told she looked bad. Later I escorted Mom in for her nap. She was very, very tired, even though she hadn't been up long and had gotten a good sleep last night. She noticed that she was slower "getting around" than usual and was finding it unusually difficult to "pick up" her legs as she walked. I had noticed this, too, earlier, and, just prior to her heading from the rocker into the bathroom, had offered the wheel chair, "just in case". Stalwart that she is, she refused, with a glance of consternation aimed at me. Anyway, to tease her, after she wondered aloud about the seriousness of her movement difficulty, I said, in a mock dramatic voice, "Well, of course it is! You have a horrible, debilitating disease and I doubt that you'll make it halfway to your bed before collapsing!"
    She grinned, then shot me a look that I can only describe as cautionary and said, "Well, I do have lung cancer, you know."
    So, she knows, now, and remembers, often enough to waggle her diagnosis at me in lieu of a scolding finger. I was surprised but not taken aback. It is, after all, her tumor. She has every right to own it and its effect on her.
    So, on we go, Mom & Me & Mom's Tumor. There are times when I feel as though I should name that being inside her left lung since it is a definitive partner in our life...as it turns out, a long time partner.
    Later.
- posted by Gail Rae @ 19:19   email  this post