Okay, let's see...
...today is Friday. The MPS's and MPNC's visit ended yesterday. It went well, even though all of us except Mom wore ourselves out trying to keep up with everyone's hours, which meant no one except Mom slept much. I remain pleased that I repealed all my visit regulations; and remain convinced that this is no longer the time for those rules.
    Obviously, this part of Mom's and my journey together is requiring more stamina from me, but I successfully passed the first (I write "first" because I'm expecting there will be others) personal doubt phase and have every reason to expect that I will pass through others successfully, too.
    On Tuesday (I think it was Tuesday), we finally met with Mom's assigned Hospice nurse, who will apparently be visiting Mom every week, at least. When he called to make the appointment he mentioned that he wanted to see if Mom and he and I made a "good fit". I was pleased with his attitude and it looks like all three of us feel that we do. My only care concerns, at this point, surround the issue of comfort medication, particularly in regard to her breathing and the possibility of Mom's anxiety level increasing as a result of diminished breathing. His observations told me that she is probably already at a level which would cause anxiety in most people, and yet she isn't anxious about her breathing. At one point he asked me if she always breathes as quickly as she was breathing during the meeting. I focused on her breath rate and confirmed that it was pretty normal. He clued me that it was fairly high. This was the point at which he and I entered a discussion about using meds such as morphine derivatives, other opiates and synthetics which address anxiety to control breathing. I related the story of the breathing crisis in the hospital during her recovery from pneumonia, asserting that my presence relaxed her enough so that the Xanax, Ativan and/or Morphine that the doctor and nurse were suggesting weren't necessary. Our Hospice RN confirmed that someone whose body is "opiate innocent" (which described my mother) often reacts, "for a few days" in much the way I saw my mother react to the pneumonia and the small variety of psycho-pharmaceuticals that were sneaked into her body when I wasn't looking (but was trying hard to look): Slack jaw, haziness, inability of her brain to negotiate the distance between thought and speech. He talked, some, about experiences he'd had with people who had been adamant against such medications yet had finally acquiesced. His recollections were, of course, positive. I said (and I meant) that I trusted his experience and would carefully consider his judgment on this issue. I am, too, reserving my own judgment, mainly because no matter how hard it appears as though my mother is working to breathe, if she is not showing any anxiety then she's not anxious and doesn't need to have anxiety relieved. As well, by her own admission, she'd rather be alert than out of it. Frankly, I'd also rather have her alert. Regarding my wishes in matters pertaining to this part of my mother's journey, the Hospice RN and I had an abbreviated discussion about the difference between what I want and what my mother wants. In context, which was treating her anemia, it made sense that my desires should take a back seat. After the RN left, though, and I further considered the matter, I realized that I need to be careful not to allow my desires to take such a back seat that this part of our lives becomes so difficult for me that I despair of being able to accompany my mother all the way to the end. She and I are bonded so intimately that, in some cases, the line between her desires and mine is blurred almost beyond recognition. It is this blurring that has gotten us as far as we are, now, and in fine shape, I might add. Thus, even as this is her death, it is mine, as well, especially considering that it will, indeed, be the death of an identity I've forged over the last 14 years. The two deaths are, of course, of a different character, but they both not only deserve but require the respect of Hospice people. My mother is alive, now, in large part, because of this blurring of my desires and hers on both of our behalves. It makes no sense to change this course...in fact, it would, I think, completely obscure the legitimacy and the extraordinary utility of our shared life if we suddenly change course and make this "all about her". My mother is here, I believe, because it has been "all about her and me". This should continue until the end of her life and my role in it. It may not be the way its usually done but, then, she and I have not been traveling the normal Caregiving Road.
    Am I making sense? I feel as though I haven't quite explained myself and my preferred approach to this period in my mother's and my life. I'll probably revisit this.
    Reconnaissance cough to my right and down the hall. Yes, we are fully back into Mom's normal schedule; which is, of course, my normal schedule, as well. More...
    ...later.
- posted by Gail Rae @ 12:10   email  this post