It's lung cancer.
    Ba da boom.
    Figured I'd get that over with first.
    My reaction when the doctor told me today was phlegmatic. She did, indeed, have pneumonia, too, or, at least some sort of "interstitial" build up of fluid, and that seems to have abated. She can breathe much easier, now, and is back to 2-3/lpm oxygen. The weakness that has been creeping up on her over these last three months and bombarded her Wednesday night, though, remains severe, although over the last two days she's been recovering a lot of the abilities that seemed to have abandoned her while she was enduring her physical crises in the hospital. She has almost completely recovered her ability to speak. She's regaining her ability to feed herself. Her humor and interactivity are completely back, although I don't think those ever lagged, she just couldn't communicate them very well. I understood that they were there from the variety of glints in her eyes when she was addressed, but her inability to work her mouth and a minor, temporary disconnect between her brain and her mouth hamstrung her ability to communicate. She still can't stand without "2 person max assist" [I'm suddenly learning lots of new technical phrases], but I have guarded hopes that some of this may come back to her for awhile before absolute decline sets in. So does she. Between the two of us, I'm hoping we might be able to manage a bit more mobility than she now exhibits. I'm hoping this because I think, being used to feeling that she can maneuver in her own home without more than the help of walls, counters, walkers, occasionally the wheel chair and her daughter, it will be important to her to be able to continue some of this for awhile as she is incrementally adjusting to becoming more and more bed bound. Thank the gods, though, that the woman loves to sleep! I want her to be able to sit in her rocker and muse and watch TV, though, as long as possible. I've asked hospice to help me train to handle her physically. Luckily, at least in this area of the world, they do this.
    I took it upon myself to decide not to treat. The doctor recommended this course, and MCS and I had a conversation about this possibility a few weeks ago and we are sure, considering her physical frailty and her preference for not being "poked and prodded" by doctors, that "in the event", this would be the best course, so this wasn't a hard decision at all...it has already been decided. When the doctor suggested it I nodded vigorously. The "mass" is not insignificant: About the size of a small hamburger, so it's been there awhile. I had an enlightening conversation with the fantastic hospice intake nurse, with whom I immediately bonded. This evening as we were going over Mom's medical history in depth for the last several years this amazing nurse brought to my attention that it seems likely that the mass may have birthed itself around 2004, so, you know, she's had it awhile and, baby, look what kind of life she's led, despite it. But, now, it's become a force in her life with which to be reckoned, so, we'll reckon with it, her and I, together, although, as I contemplate this I realize we've already been reckoning with it and, I think, we're on copacetic terms with it. I have no recriminations or regrets about it not being found earlier, about doctors not looking for something like this or finding it early enough for it to have been treated. My mother is a "live your own life" kind of person, which is what she's done. Her preference for a light medical touch is part of what defines her, and it will, obviously, define her death. I mean, the last real operation she had was in 1973, a routine D&C that they used to do on women who were completing menopause. I'm sure she could have had more operations for this or that if she went to the doctor more and demanded more medical investigation, but that's not her style. She has always trusted her body. I think she can trust her body in this, as well.
    The doctor vaguely spouted a "6 month" time frame before death. Of course, it could be shorter, or longer. You never know. She is in no pain, nothing unusual, anyway, nothing out of the ordinary. And, yes, I've employed in-home hospice to support us through her End of Days. I'm taking a five day break, yes, the kind everyone else calls "respite" (first time in my entire companionship/caregiving career I've taken a real break). This is mainly to get the house in order for the changes that will be made to accommodate Mom living here safely and comfortably. But, I have to admit, it's nice to feel as though I have a few days sort of to myself to settle myself with new tweaks on realities.
    Mom's spending those five days at a, hmmm, it's hard to call it an "institution" or a "facility", it's very much on the order of a private home that takes in lodgers of the intensively needy type and is their final home; sort of a midwestern concept, which is interesting, considering that the assistant manager observed in conversation with me that many of their residents (now including Mom) are "midwestern farm girls". It's a beautiful place, well set up, very much like many people's idea of a warm, comfortable, inviting, even ideal home. My mother had been there about a half hour when she asked the assistant manager, several times, "How much will you take for this place?" Always the opportunist! Each resident has his or her own bedroom. I'm not sure but I think there are six or seven bedrooms. The living room is not so large as to be daunting but not so small as to be suffocating. Lots of comfy chairs and couches. A home type dining room; everyone eats at the common table. The kitchen is just a counter away and you can smell the meals cooking, all of which are home made. There are a variety of activities arranged for the residents, but the schedule is extremely flexible to allow for visitors and individual residents' preferences. While I was there two daughters were visiting with their mothers. I chatted up several of the residents; most of them initiated conversations with me, rather than vice versa. Some are in various stages of dementia, some are not. Some, it is obvious, require very intensive care, some do not. A married couple lives there, too, both in their nineties, each of whom has minor physical frailties. During the evening hours while the Hospice Intake Nurse was conducting her interview of me, one of the residents, a shrunken man with piercing eyes who looked upon us as though he was sizing up whether we were friendly or threatening invaders in his home, sat in a chair opposite us, stared at us for awhile, then, satisfied, I guess, that we meant no harm, sunk to his side and fell asleep. Something about this felt particularly cozy and accepting.
    Mom was so impressed with the place that I briefly contemplated something I'd never before considered; moving her into the place permanently. Two things, though, changed my mind:

• It was clear, despite her desire to own the place, that Mom is anxious to get home, "with the kitties", and with life as she is used to it, although I'm sure she'd like our life to continue in a home like that, and;
• Three different residents talked about "going home" with conviction, one of whom exhibited about the same level of dementia as Mom and has been at the home since 2005, so, you know, I realized, be it ever so humble, and, believe me, our home is very humble compared to this delight of a care center, there, truly, is no place like home. I've come this far with Mom, I think I can go all the way.

    It's hard for me, right now, to take any time frames seriously. With each day I always know we're closer to the ultimate separation. I've been aware of this for a long time. I abandoned all hope for any particular time frame, despite my mother's insistence on her immortality (and mine, too), just because I have, for a long time, figured, and continue to figure that you just take it a step at a time. You do what is necessary in the moment. No more, no less. And, finally, you take that last step.
    There remains lots to report and, of course, I intend to report all of it, but, in the meantime, we're doing well, we've got a diagnosis and someone else's time frame but, well, you know, none of that has anything to do with the wonders that I expect this part of our adventure will reveal.
    Oh, one last thing. Although I haven't yet, just because the time hasn't been right, I'm sure, at some point, I'll tell Mom that she has lung cancer. I'm sure I'll also tell her that I made the decision not to treat and I think she'll be okay with that. She'll probably be so okay with it that she will not believe she has lung cancer, and that's okay, too. I am getting an intimation, now, of how she will probably deal with what is coming up regarding her decline: She'll take it one day, even one moment, at a time, one difficulty at a time, she'll appreciate all the help she can get in regards to comfort, she'll decide how hard it's getting and she'll decide when it's just too hard; and, I think it will surprise her when she hits that point. And me.
    Oddly, I'm excited. Being a loving, as well as benevolent, observer of how her life concludes has me jazzed. She and I have become so close in so many unbelievable ways. I do not want to miss out on this final lap. She will be leaning on me, more and more, physically, and, partially, emotionally. It's been hard for her to learn to do this and she doesn't do it easily or willingly, but she is accustomed to doing this now and trusts me implicitly; so much so that over the last some days in the hospital and last night at the care home, when she was lifted by others to be transferred from one place to another, she'd instinctively reach her hand out out to me and attempt to lunge for me. But spiritually and intellectually she's never leaned on anyone and still doesn't. I'm so curious to see what it will be like for such a person to bring her life here to an end.
    I'm exhausted. I've got stuff to deliver to Mom's current "motel" tomorrow and I'm recovering from a severe bout of some sort of stomach flu bug that apparently worked it's way through the hospital while I was there visiting Mom and bedeviling staff, so I'm especially pleased that I have a few days to take some deep breaths and figure out how to rearrange this snug but somewhat unaccommodating house to enhance this next phase of our life. So, you know, as always...
    ...later.
- posted by Gail Rae @ 22:55   email  this post