Today is the first day in seven...
...in which I haven't thought that I'm not going to make it through this last leg of Mom's and my journey together. I'm not sure why I'm feeling better about being able to hang in here. There's nothing different, today, in what Mom is requiring in the way of care; in other words, no let up, but no appreciable ramping up, either, unless you consider that doing her hair, which happens every other day, a minimal ramp up. From a medical business point of view we're actually in a slightly worse position, since I expect we'll be switching Hospice services this week, and I hate switching. From a purely business point of view, I went through a couple of boxes in which I'd been filing mail and discovered some past business to which I forgot to attend during the several weeks of living in two places, although nothing unforgivable. But, finally, I guess, my caregiving muscles stopped aching during all the extra moves this period is requiring and are working smoothly and easily.
    So, why do I record the horrible episodes when my soul is shaking with fear and pain when, if I would just look back, I'd discover that I've had similar episodes before and made it through? I record them because it's all a part of the flow of caregiver-think. I imagine there will be more episodes of caregiving muscle protest before Mom and I have come to the end of our journey. I hope I have the hindsight to remember that, so far, I've always made it through, but it's not in my nature to do this so I doubt that I will. Every episode will seem as though I've reached the end of my endurance. Every episode will trigger depth grief that seems to prophecy a tragic end. And, I am absolutely certain I am not the only lone (in the sense of doing All This alone) caregiver who experiences these episodes of impending tragedy; nor am I the only one who makes it through them, rather, who has made it through them so far. My educated guess is that there are also many caregivers who have a final episode and drop out. I record my episodes, successfully endured (or, who knows, perhaps not, in the future) for all of us who are overwhelmed, whether we sink or swim. They need to be brought to the light, no matter how enervating and shameful they are, because, I believe, they are so common and so potentially destructive...and, because, right now, we as a society have few legitimate, life affirming methods of dealing with these episodes. Respite? Sure, if you want, as happened in Mom's and my case, to have your care recipient develop a bed sore, teeter on the edge of "failure to thrive", have medicines administered in a method that severely undercuts their effectiveness and have yourself end up scurrying about to reverse both of these, neither of which would have happened, you know, if your care recipient had been at home, no matter how tired and overwhelmed you are. Spiritual Counseling? Please! Don't "grace" me with yet another version of the oxygen in the airplane analogy; or a "your reward will be great" suggestion. Practical counseling? Sometimes that actually helps...as long as it is to the situation, a situation which has been acutely observed by the adviser. Often, it is not. Sympathy? The best sympathy comes from the street, I've discovered: Overheard conversations between caregivers and their friends and relatives; recognition of status when one's "care-dar" kicks in and caregivers silently acknowledge one another eye to eye; a hand on the shoulder when someone comes up to Mom and me in public and says, "I did that for my mom; thank you for reminding me; it was hard, but I wouldn't change a second of it."
    So, you know, I'm not asking you to bear with me when I describe the dregs of these caregiving days. I'm just describing. Sometimes it's holy. Sometimes it's a holy terror. It's all caregiving, though. All of it. It all deserves to be recorded.

    I'm thinking, by the way, and I'm just putting this out there, as my time is even more limited, now, than it was prior to the evening of 5/14/08, that I will be resurrecting the =>Moving => Mom journal. Today it occurred to me that it would help if I record her movement, day to day, to help me watch for increasing strengths and weaknesses. This would put me in a better position to accurately answer the oft asked Hospice question, "Are you noticing any decline?". Exercise sessions, when they happen, will be included, but mostly I think I'll be describing, bluntly, how and how much Mom moved on any particular day. We'll see. I still have loads of tests to record (I finally found most of them, today, and have a list of those of which I still need to obtain copies, like, for instance, the final Chest CT used to identify Mom's lung tumor); I still have to set aside some time to restore my Mac files; I still have a load of other items on my steadily increasing mental list of Things to Do. So, you know, it's another item.
    Later.
- posted by Gail Rae @ 18:05   email  this post