Mom & Me Four Archive

    It became obvious to me some time last week that one or more of a few possible things may be happening (some of these "things" I've been considering for longer than a week, as you know):

• My mother may have passed the "grace period" in which medications (both her glipizide and her lisinopril) work well to control her diabetes and blood pressure;
• Lifestyle is going to have to come into more play than before in controlling these two conditions if we want to keep her out of the clutch of physicians, as she prefers;
• The only way to receive her cooperation in this is to explain to her, in detail, every day, sometimes more than once, for exactly what we are controlling and show her evidence that either our control is working or not;
• If she and I want to control these conditions, somehow, she will need to disavow herself of the perceived safety of spending her days sitting in her rocker.

    Thus, both our lives have become, within a little more than a week, much more intense, particularly mine. Except for one day, Labor Day, I've had her out walkering on the driveway every day. If she seems up to it (I don't ask her), I have her do an additional session in the house doing laps down the hall and back. The surface is much smoother than our concrete driveway, thus there is less wheel resistance and she is less likely to push the walker with her arms and can practice relaxing with it, which is hard for her to do on outside surfaces. As well, the tight space inside actually helps her practice close-to-the-body pivoting as she turns herself and the walker. I insist on at least one outdoor session per day in order to expose her to the sun and the "nature" of our yard, though. She is more likely to keep her eyes forward and head up when she has something to look at. Conversation, too, tends to take her out of her work, which makes it easier, and there are always lots of things in our wild and wonderful yard for her to notice and mention as she walkers. Yesterday she was the first to notice that among the blanket of tiny yellow daisy-like weed flowers our yard is currently hosting, there are a few bright purple daisy-like weed flowers. She loves to grouse about what she considers to be our yard's need for maintenance, too. Frankly, my position is that the less maintenance it receives, the more likely it is to spark her notice and commentary, which is good. When we first moved here in 1997 for yearly springs, summers and falls, the yard, both back and front, was so severely maintained that it had no character, thus, attracted no notice or comment. At that time, of course, she was getting out into the community all the time so the blandness of our yard was beside the point.
    Anyway, this is why I haven't kept up much with this journal. Although I doubted that caring for my mother could become more intense as long as she isn't bedridden, I was wrong. Getting her out every day involves a good third of an hour of preparation before our trek, a good three quarters of an hour afterwards to cool her down properly so that her muscles don't seize, and then planning other movement and dietary options throughout the day to maximize control. Some of these are:

• Making sure she sleeps no more than 12 hours a night and no more than two hours for napping. So far, this has worked well with no protest from her.
• For the last several months I've allowed her to let her tissues pile up on the coffee table next to her walker. As of a few days ago I've begun to remind her to take them to the garbage across the room a few more than a few times a day.
• Reminding her, relentlessly, that when she refuses all my efforts to tempt her with activity, game playing, etc., and isn't interested in watching movies or shows, she must still remain up.
• Incorporating one or two more bathroom visits into her day.
• Spending lots of time in conversation in order to encourage whatever mental benefits are accruing from her increased movement and further decreased refined carbohydrates (although, truthfully, it's becoming difficult to scale back the amount of refined carbohydrates in her diet any further than I've managed, so far; they were already fairly well scaled back).
• Brain Age seems to have lost appeal for her within the last month or so. Looking back on it, I think I could have predicted this, as, the more games that are added, the more frustrated she has become, and, games are added even if scores remain flat or drop. However, her interest in Sorry and Scrabble remain and we play those a lot.
• I am ferocious about monitoring fluid intake, now, between not too little and not too much, although, frankly, I have no idea what effect this is having.

    We seem to be making some headway in all these efforts. The increased activity and decreased refined carbohydrates certainly aren't hurting her, although when I knock out the O.J. in the morning she asks for it, then complains when I tell her, "Not today, Mom, maybe tomorrow." Yesterday I added it, just to see if, with the increased movement, it made a difference in her BG. It did, although I'm not sure if it's a difference about which I should worry.
    How am I faring through this? It's debatable. I managed to work myself into a frustrated mess researching alternate diabetic medications and contemplating the possibility of insulin shots, thus, I've dropped this for the time being. Unfortunately, this increases my anxiety about not being up to snuff should her doctor decide to switch her diabetic med or suggests insulin. I'm rather hoping the evidence will show that she continues to not display the side effects of out of control blood sugar and he will tell me, "Don't worry so much. She's doing fine. Back off." I have reason to think this because I've become even more focused on the smell of her urine over the last few weeks and continue to notice that it does not smell sweet. It does not, in fact, smell any different than it has over the last few years. Thus, I have to assume that her diabetes is not affecting anything else.
    I am surprised at this blip in managing her BG. Obviously, her diabetes is far from "going on vacation", which is causing me to reconsider exactly how far along she is in regards to her Chronic Renal Failure. Her BP also causes me some concern in this respect; but we've had BP blip periods before, so I'm not nearly as concerned about what this indicates. As well, if a medication change is necessary to help control her BP (and this is debatable, considering Medicine's current view on what comprises "low" and "high" BP; it seems that a continually low diastolic is automatically considered "low BP", regardless of systolic readings, which, actually, makes sense, when you think about it), it will most likely involve simply upping her lisinopril, with which I have no argument. It's a gentle med, for her, and easily manipulable.
    Tomorrow we go for a blood draw. I've put this off, as, knowing that she will also have blood drawn during her appointment, I wanted to make sure that she didn't end up being stuck three times in a month and a half, rather than two. This one will include a BMP, about which I am very curious; particularly about her electrolyte and kidney function levels. I expect her glucose reading to be higher than "normal", but, you know, it usually is, by anywhere from a few to several points. Other than this, I've also begun to take her temperature rather frequently, every other day or so, to see if she is harboring some sort of internal infection that might be affecting her BG and BP. So far, she continues well within normal adult arterial range.
    I've noticed that I end day after day exhausted, both physically and emotionally. I'd like to say it's a "good tired", but, mostly, it isn't. Sometimes, in order to solicit her cooperation, I find that the only thing that works is veiled threatening, which includes:

• Reminding her, by recalling episodes of intense medical involvement, that our goal is to keep medical treatments and procedures out of her life as much as possible;
• Reminding her how long I've been doing this and that, as she resists, I become even more tired and frustrated than I already am, thus increasing the possibility that I will, finally, throw up my hands and decide I can no longer do this, which automatically puts her in the position to:
  • Come under the care of one of her other daughters, thus;
  • Having her life torn down around her literally, because her other daughters are not prepared to change their life to suit hers, they will insist that her life change to suit theirs: This particular threat is fairly effective because she has, I've discovered, up to this point, assumed that if I can no longer take care of her, one of her other daughters will "move in with [her]". She has been shocked to discover that, in fact, there is no one available to move in with her besides me; that she will be the one to move, which means liquidation of quite a bit of her property (including personal property), a move to another state and/or city, loss of me, her cats, and, mostly likely (definitely in two cases, probably in the third), she would come under the auspices of professional care, which she resolutely does not want and realizes would mean the dissolution of her strong connection to her family;
• Being absolutely up front with her about how harrowing it is for me to negotiate the medical establishment on her behalf in an intense way, how fraught with frustration this pursuit is and how, the more intense and frustrating this pursuit becomes, the more likely I am, yet again, to throw up my hands in confusion and either inadvertently keep her from solicitous treatments or allow unnecessary and disagreeable treatments.

    Sometimes she gets it. Sometimes she doesn't.
    I have a feeling I am on the brink of yet another break through in caring for her. This time, though, the feeling to which I am most susceptible is fear of inadequacy rather than anticipation of revelation. I hope I'm wrong. I want to be wrong. I'm finding it hard, though, this time, very hard, to rally what seem to be the few reserves I have left and approach this period from an optimistic standpoint. I've found myself indulging in some uncustomary and only half believed desperate praying to whatever gods happen to be floating by at any particular time for some sort of miracle that will wash through my mother's body and allow her to remain on a keel that I can easily manage from now until what I hope to be her easy, quick death. I'd love to be able to honor her desire to simply leave her alone, as she expressed a few days ago, and let her ease through her final years worry free. It has come as a surprise to me that I suddenly find I can't honor this if I want to also keep her out of the treacherous clutches of medicine. I have even considered that this recent BP spike may be, in large part, due to the fact that my anxiety level about her physical condition has risen and I am transferring this to her. Despite realizing this, I can't seem to settle myself. Thus, some of those desperate, half-believed prayers have been offered on my behalf, as well, for calm, wisdom, ease and acceptance.
    As yet, no answers that I can identify.