Yesterday was the second day in a row...
...that Mom has complained, upon awakening, this time from her night sleep, that she "just didn't feel good" but couldn't put her finger on what this meant. She said she wasn't in any pain. Her temp was at the upper reaches of the Arterial range, one tenth of a degree before the designation of "fever" kicks in. I am reminded that as terminal people approach death, according to Final Gifts, temperature may be slightly elevated. She's not lost her appetite, though, and her "interest in life", which is certainly less than some years ago, remains the same as it has for some years. She seems a bit puzzled by this "not feeling good" development, but not worried by it. So, yesterday, we had a full wheel chair day. I also made it a hair day and, since I awoke her earlier than her 12 hour sleep mark, I included a hair day, full wash, set and comb out. She was in unusually good humor for the Hospice Nurse visit but decided she wanted to cancel, yet again, the Hospice Spiritual Counselor and directed me not to reschedule the visit but to put it "on hold". That's what I did.
    After a four hour nap once the nurse left, although she wasn't easy to rouse, she perked up during dinner. As I was scanning through DVR'ed programs to see if I could find anything to capture her interest she noticed the run of Law & Order: Criminal Intent shows I had taped and said she felt in the mood for "some blood and guts". This was a surprise! She usually prefers her mysteries to be of the more genteel type. We worked through all the ones I'd previously taped and hadn't watched. She was disappointed that there weren't more...so I've queued up all the L & O episodes I can find for the next week, just in case. Last night, though, a program on PBS about a flood that was probably responsible for the Scablands substituted well for the final lack of crime dramas.
    I'm mentioning these "not feeling good" days for two reasons:

• First, they surprise my mother when she has them, so she considers them out of character for her;
• and, second, with yesterday's I was reminded of her "six month" prognosis and wondered if there was some veracity to it.

    Nothing else seems to have changed. I've been scanning her meticulously for a drop in hemoglobin. I'm not sure whether she's showing signs of one but, if these days continue, I'll probably ask for a blood draw next week, just to check. Of course, there isn't much we'll do if it is dropping but, at least, I'll know what's happening and, despite the Hospice Doctor's and Nurse's adamant assertions that information without action isn't valuable, it is to me. It calms me and, hey, guys, that's important from the standpoint of being my mother's caregiver, thus, it's care for the caregiver and that's important to both my mother and me.
    Which reminds me, during the H[ospice] N[]urse appointment last week HN and I discussed blood transfusions. It seems they are quickly becoming medically unpopular, which doesn't surprise me. He mentioned that Banner/Good Samaritan in The Valley has already "gone bloodless". I didn't think to ask what is used instead. My nephew clued me in, when he was here building the ramps, that there is a new concoction, completely synthetic, including a mimic of hemoglobin, that is being tested on Iraqi soldiers, which promises to work better than blood and, as well, the artificial hemoglobin, which isn't a cell but attaches itself to blood cells, is more or less "permanent" and shows excellent results. However, I doubt that this is available to such as my mother at this time.
    So, hmmm...maybe we're on a decided downhill slope. It will take more time and more symptoms for me to determine this, for sure. I figure, though, it's a good idea for me to be internally prepared.
    I discovered during HN's visit that my mother's concentrator is clogged. Once the clog was discovered it immediately vanished. I'd been wondering, lately, about whether it wasn't functioning up to par and had dialed it up about 36 hours ago to get what felt to me like a fairly good flow. Luckily, HN carries a flow meter in his pocket. Just checking the machine cleared it.
    HN also expressed confidence in my ability to care well for my mother, which was good to hear. Not that I have doubts, but recognition from the pros is nice. Just before he left he asked how we seemed to be doing overall. "We're cruising," I said, looking at Mom for confirmation. Mom and he nodded in agreement.
    I'm letting my mother sleep in today. I'll check in on her at 1300, in a few minutes, at her 12 hour sleep mark, but I may let her go until 1400, depending.
    If we're on the downhill slide, I hope that I'll be able to keep in mind that, when you can't fight gravity, it's best just to go with it.
    Later.
- posted by Gail Rae @ 12:40   email  this post