Why do I include all the personal detail here?
    I'll get to that in a minute, after I add more detail, both technical and personal.
    Today's been a busy day so I haven't added any more tests. I did manage to revise Mom's medication schedules and began cleaning up the existing test results so that when I copy those in order to plug in new dates, times and numbers I don't have to repeat all that information. The cleaning up includes adding glucose numbers, collection times (to show her various states of glucose spiking, especially in the afternoon) and noting whether or not she was fasting, since I know where to find that information on the tests now, and moving all Hemoglobin A1c results to separate tables. I still have a ways to go. Tomorrow promises to be a somewhat lighter day than today, although I never know. I didn't realize today was going to be heavy duty but I'm pleased with how it turned out.
    I was adamant about getting Mom up and moving today, although she didn't actually eat breakfast until around 1100. Once I got her going though, we went shopping for a new Scrabble game and took an extended trip to the grocery. She resisted and I became a bit pushy but, as usual, Mom was later pleased that I'd insisted. She didn't even take a nap this afternoon. Too much was going on and she was too alert.
    An interesting incident happened at the grocery. About half way through our list I noted, by smell, that Mom was having a fecal accident. I mentioned it to her discreetly. She was sure she wasn't (sometimes she has no idea this is happening). Once we got to the bathroom though, we discovered she had and it had just begun. Naturally, today of all days, I'd neglected to bring the bag I typically carry with baby wipes, a few extra pairs of paper underwear and an extra set of clothes. Since we caught it so quickly the clothes weren't necessary and I made do with the cleaning supplies in the bathroom. I needed pads though, so I left her in the bathroom in the handicapped stall (which works better for these incidents since I need to be in her stall, too) and retrieved a package of paper underwear from the store shelf, later paying for the ripped open package.
    There were two curiosities surrounding this incident: The total movement was massive and she was completely unaware not only that she'd begun before we got to the bathroom, but that she had continued while sitting on the toilet as I cleaned her. I've given some thought to both of these aspects of today's accident. Although I've noticed over the last few days that she had been going to the bathroom at home, spending a lot of time in there and coming out without having an apparent bowel movement, I'd asked her several times if she is constipated and she's been telling me she is not. Today's incident told me she has indeed been constipated. We talked about this later. I told her that when I ask her this I have a reason and I need to know if she is "having trouble" eliminating in order to short circuit events like today's, which I usually can do. I also spent some time explaining to her why this one happened. Although she has been moving more than usual, I explained, her body is signaling that she isn't moving enough anymore to accommodate her revived condition and we need to consider, now, adding a little more movement. We discussed a variety of strategies which will be implemented slowly, such as taking a short walk in the morning immediately upon arising, setting a regular rising time in the morning regardless of whether we have "plans" and limiting the time she naps. Although she was not keen on any of the suggestions she agreed that we needed to do something and we "may as well try" what I suggested. I relayed all this information as encouragingly as possible, telling her that all of this was a good sign; that her body is, essentially, saying, "Ma-ry, oh, Ma-ry, I'm ready to be more active again."
    I'm still not sure why she was completely unaware that she was having a bowel movement throughout the entire incident. This is only an occasional occurrence, now. It's been almost a month since she's had an elimination accident, mainly, I think, because her body awareness is returning. We discussed this, too, and I told her that today was part of her Early Warning System. Although she did move and get out some yesterday, she also spent a lot of time in bed, went to bed early and woke up late. "Mom," I said, "we have the choice of falling back into the mode you've been in for the last two years but I've just about decided to refuse that choice. Now that I know it is reversible I'm focused on making sure it doesn't happen again."
    She was reasonable in her response. Most of the "lecturing" I did today was a pep talk. I surmised, out loud, how I feel that, although her anemia was not caused by actions we didn't take, it worsened because I gave into her increasing and seemingly insurmountable lethargy and now that I understand this, I'm not going to let it happen again. I talked about how, since the accidental colonic preceding the colonoscopy, she has been so much more alert and revived that I can no longer accept that the last two years of her entrenched lethargy are simply due to "old age". I offered her a heart felt apology for having allowed this to happen over the last few years, promised her that I was learning my lesson and pointed out to her than in less than a month all her dangerous health conditions (anemia, CHF, diabetes) have begun to reverse themselves even as I have been cutting back on her medications. Thus, neither she nor I can any longer assume that what has been going on the last few years is normal. She 'agreed' in that sly way she has of getting someone to shut up, with which those of you who know her are familiar, and at that point I dropped the subject.
    Interestingly, although she had been a bit slow both physically and mentally this morning, immediately after her massive elimination her energy shot up, her alertness improved, and as we finished our shopping she was stepping smartly about the store, passing me as I browsed for the items on our list, anxious to hit the next aisle to see what was there. I mentioned this to her, too, and she enthusiastically agreed that she was feeling much improved.
    So we played a round of Scrabble this afternoon. I forgot to mention that when we played Yahtzee last night, I had to reteach it to her, although she absorbed it fairly well. The same thing happened with Scrabble. A couple of times when she was fixing her letter holder with what appeared to be a confused stare I gave her clues about what she could do with her letters and the ones already on the board. A few times, as well, she didn't recognize obscure words that she normally would have jumped on by dint of also being an avid crossword puzzle fan, but this appeared to be reversing itself by the end of the game. As we both found places for our very last letters she was recalling quite a bit, including her strategies for racking up points. I think the key, now, is to keep up games like this, encourage her to get back to her crosswords and get her out more.
    I am very encouraged by today. I felt as though we were siphoning into the more obscure healing powers of god/God/All and it was all working. I promised her, as I do whenever she begins to look boggled by what she imagines will be the expending of unpleasant effort, that I wasn't planning on training her for the marathon, yet. She laughed.
    Now, why do I include all this detail? Precisely because the truth and the generality of our adventure lie in the detail. As well, my learning and growing in this experience both happen in the detail. My feeling is the most important service this journal and site provides is realistic encouragement for other caregivers out there. We really don't need greeting card sentiment, diabetically sweet inspirational poetry, vague, pretty platitudes and invitations to see our loved ones ensconced in exaggerated romantic visions. What we need to see, hear about and talk about is the dirt, the gritty detail, exact descriptions, how we deal with it, what we learn as we deal, how enspirited we feel and how our perspective enlarges when we've dealt (either successfully or unsuccessfully) with yet another back street circumstance. I know from experience that there is nothing more inspiring than working in and through that dirty detail. It's something all caregivers come to know.
    Lastly, refusing to hide the dirty detail of caregiving adds a measure of dignity to our loved ones that cannot be granted in any other way and, finally, produces the most inspired and inspiring experience of all: Seeing life, in all its guises, as awe inspiring and awe-full.
    When we caregivers talk dirty detail, listen to us. I promise you, if you listen to the end, it will be more exhilarating than a million glossy greeting card sentiments.
    It's late. I need some sleep. I want to be able to greet whatever might happen tomorrow refreshed and able to be completely absorbed in another day of this amazing journey.
- posted by gail rae @ 02:25   email...this post