Well, I'm feeling a bit more hopeful...
...primarily because, this morning, I've been reading Hospice Blog more thoroughly, particularly the 73 posts labeled "Medicare". Rather than compose a written defense, immediately, I've decided that it would be better to have a conversation with the Medical Director (she and I work amazingly easily and successfully together) about all this before I fly off the handle and present an hysterically, freaked, multi-paged document over their fax machine. My mother, after all, is a cancer patient and, when qualified for hospice, her condition was such that she could easily have been said to have six months or less. It is not that she has improved, or that she's in remission, I'm sure, it is that she is in an environment (our home) and under the type of care (including mine and Hospice's) that agrees so completely with her that she is able to shuffle herself through each day with the assumption that she'll be able to shuffle herself through tomorrow, as well. And, she does.
    So, for my own purpose, I want to list a few evidences that, although her decline is so slow as to be imperceptible during the hour a week when the Hospice RN sees her, it is still evident. I will run this list by her Hospice to see if it makes any difference:

• In the last month she has been less inclined to sit herself up in bed on her own. Figuring that she arises from bed twice a day, in a week I'd say that she depends on me to raise her up into a sitting position 10 out of 14 times a week.
• I believe her sleep quotient is increasing. This is why I've begun to note exactly when she settles into bed and exactly when she arises over at The Dailies.
• When she left the rehab facility on 6/29/08 she still had the energy to clean her arms, as well as her face, when we bathed her. A little over a month ago she found it increasingly difficult to clean her arms, saying that she didn't have the energy to complete them. After a couple of days, I took over this part of bathing without question or cajoling for her to continue trying. It was obvious that doing this on her own was beyond her energy capability.
• Over the last few weeks I've noticed two curious developments which I learned, just a few days ago, while reading Self, Senility, and Alzheimer's Disease in Modern America: A History, are aphasic and, in the author's father's case, the first was connected with his lung cancer (most likely because of metastasis to the brain: Forgetting the words for things, both nouns and verbs (which she has rarely done, previously, but has become a regular occurrence) and mixing up her left and her right. Actually, the nurse sort of observed this, although I'm sure it didn't make an impression on him. I noticed it immediately when it began happening because I mix up those two all the time. I have my whole life. And, my mother, up until the last few weeks, has taken much ironic pride in correcting me every time I reverse them. I, frankly, thought that perhaps it was due to her increased lack of energy, of late, affecting her dementia, which is always worse when she is tired or not feeling well. Seems it may be related to her lung cancer's development.
• Developments I've mentioned to the Hospice nurse include:
  • What appears to be the bouncing of her hemoglobin. Considering that, regardless of whether her chronic anemia existed before her lung cancer (since we don't know how long she's had lung cancer) it is certainly in a very close relationship with it, now, and is no doubt being affected by it. I think I recorded, in one of these journals, within the last week, that I talked to the Hospice RN about doing a CBC/BMP blood draw, just to see how she's doing in this area and her kidney functions, not necessarily implying a prompt to take action.
  • A persistent inability to clear her throat for several hours after she arises in the morning, which has been going on for about three weeks.
  • Humming when she breathes, even when sitting and on 4/lpm O₂...and it's not her usual "singing". I always check.
  • Number of days when we use the wheel chair completely or partially to move her around the house have increased noticeably over the last two months that she's been on hospice. In many of these cases, she is convinced that she will be able to "walk" but, once she's on her feet, she finds it hard to impossible to move her feet without the fear of falling.
  • Noticeably increasing usage of acetaminophen for what she describes as "stiffness". Considering her eccentric, incredibly high tolerance for pain, it is entirely likely that what she is describing as "stiffness" would, normally, by other people, be described as "pain".
  • A significant decrease in available energy and flexibility such that, over the last two months, we've tried three times to get her into the truck for outings and she simply hasn't been able to negotiate this, even though I always choose her "best" days to try this, wheel her right up to the open truck door in the wheel chair and "help" her lift her legs with my arms. Up through her leg collapse on 5/14/08, she was able to negotiate this task, admittedly, with difficulty, but was doing it each week to see the hematologist.
  • In the last three weeks, significant dry hacking when she lays down and when she arises, so much so that I've purchased a 10" wedge (we have a 7.5" wedge that she's been using) to raise her up a little more when she sleeps. I purchased in last Tuesday. It isn't always appropriate, but we've used it three out of the last five days, so far.
• Considering the declines that have occurred since her pneumonia diagnosis and the subsequent discovery of her lung cancer, I believe it is not unfair to assume that further declines are in the cards, even though they may be, at time, close to imperceptible, precisely because she has such a strong will, lives in such high spirits and is surrounded by circumstances that allow her exceedingly high comfort and quality of life.
• Although it is true that she doesn't seem to be losing weight (I'll be getting a scale, at the request of Hospice, before Tuesday in order to establish this) and her appetite remains sturdy, it's entirely possible that she will not lose her appetite on the usual schedule because, well, she loves good food, I make sure she gets good food and, frankly, now that her diabetes is so easy to control, she has more sweets in her life and it's possible that one of the few indications that she ever will have been in an "active dying phase" may be the necessity of prying a sweet roll from her cold, dead hands.
• Which reminds me, her diabetes continues to get easier and easier to control; her anemia continues to get harder and harder to control: Both signs that her tumor is thriving.
• Since her hospitalization, it is obvious that the days of 3/lpm when sitting and 4/lpm when moving and sleeping are gone. She is firmly in the 4/lpm sitting and 5/lpm when moving or sleeping range. Twice in the last week and a half she has ahd such trouble catching her breath after movement while sitting that I've given her an extra 45 minutes on 5/lpm just to help her settle down. One of these incidents was reported to the Hospice RN on the PRN meds sheet he requires of us each week. The other is on next week's sheet.

    There may be additions to this list before tomorrow and my planned conversation with the Medical Director. Maybe even after that. In the meantime, my charged brain is working hard to prepare me, mentally and emotionally, for the conversation I want to initiate with the MD. And, I'm feeling a bit calmer about all this, especially since I did some research very early this morning, before going to bed, about Home Health Care, which may be an interim option for her to keep her out of the inappropriate (to my mother, that is) hands of hospitalists.
    Later.
- posted by Gail Rae @ 13:05   email  this post