Pneumonia X 2
    I'm going to assume you haven't been keeping up with the Life After Death and Dailies journals. Even if you have, you'd be only obliquely aware of what's been going on over the last few days, as I haven't been posting; I've been too busy caring for my mother. I up-to-dated both journals up this morning, but only bits of pieces of the story of our last few days exists in them, so I'll weave together those threads with others here:

• Since the beginning of this week certain infirmities, not uncommon but usually signifying, when appearing together, the advent of an acute episode of "something-'er-other", have developed. In order of appearance:
  1. Falling twice in the last two weeks, especially considering that my mother doesn't have a history of frequent falling.
  2. Feet and lower leg edema, which developed slowly but which didn't abate overnight after late night leg rub downs.
  3. A heightening weakness, especially regarding Mom's ability to use her legs and "mobilize", that finally reached a level that caused transfers to be so difficult that I was, sometimes, taking holding of her as soon as she arose and lifting and swinging her from chair to chair. This development also caused much concern regarding such activities as groin bathing (which we managed to accomplish with some difficulty).
  4. Wednesday evening over a period of three hours my mother's feet and legs swelled so quickly and alarmingly that I decided to administer furosemide in what for my mother is a "double dose", 20 mg, before she retired. Although this helped the feet and leg edema abate somewhat, it didn't even touch her continued and escalating weakness.
  5. Late Thursday evening she began to exhibit what I call "tongue thickening", in which her speech sounds as though her tongue is swelling, although she has no trouble swallowing, which means that it isn't actually thickening, it is, instead, a neurological development.
• Once all these symptoms were securely in place, Thursday midafternoon, except for the tongue thickening, my concern had heightened to the point that I thought it would be a good idea to call Hospice and speak to a nurse in order to outline the developments as what I called a "reference point", in case further developments required later action. The RN to whom I spoke while the office was open was thorough and understanding. She understood that, at that point, I didn't think action needed to be taken but, as I told her, I wanted to make sure that Hospice was aware of what was going on, primarily so we could avoid an ER visit if my mother's condition worsened. At this point I suspected that it would worsen but not for a day or more. This would have taken us into the weekend and I wanted to make sure that on call people would have a clear history of what was happening, just in case. At this point, after discussion, the Hospice Nurse asked me to take her temperature and call back if it was over 99.0 (F). At 1515 it was 98.9, which is high for my mother, but it wasn't over 99.0 so I didn't call back. I suspected a hemoglobin plunge, although nothing in particular indicated this and I was open to other possibilities, as well.
• Before she went down for her nap at 1600 (early on this day but she was so tired she couldn't keep her eyes open) I noticed that her speech was becoming difficult, as though her tongue was thickening. This concerned me, as this one symptom, in particular, was exclusive to her development of pneumonia in May. The Hospice office was not yet closed, so I called to report this at 1615. The RN to whom I had previously spoken was out on an "eval" but the receptionist, who is familiar with us, promised to pass on this information, as well as the exact measurement of the "below 99.0" temperature.
• At 1708 I received a call from the Hospice Nurse on call, the same nurse who had taken our initial intake evaluation back on 5/21/08. We had a long conversation about what might be happening with my mother, considering in detail her health history, which this nurse remembered taking. My chief concerns were:
  • Are any of these developments "typical" of lung cancer decline?
  • Either way, in light of Mom's lung cancer, I was confused about whether and how to treat these symptoms and the possible underlying causes;
  • I was also confused about, and frightened of, the possibility that tests would be required and a hospital visit might be arranged...I absolutely want to avoid all possible hospital visits, from this point on; they are much too traumatic for her, now, and hospital procedure design no longer suits my mother: It is either too dramatic or too slow or both (as in the case of her last visit).
• During the discussion, it became apparent that the tongue thickening seemed to indicate that the problem was probably pneumonia. At this point the conversation centered on whether to treat. On the one hand, as the nurse pointed out, considering my mother's underlying diagnosis of lung cancer, this will most likely not be the last episode of pneumonia, as lung cancer creates a particularly inviting lung environment for pneumonia: Compromised lungs that collect and hold moisture at an ideal temperature for the development of bacteria. This was, as the nurse highlighted, a rather typical trajectory for lung cancer. My mother's first "lung cancer" pneumonial episode was in May. It's been four months since then. As the cancer develops, the periods between pneumonial episodes, and/or acute health crises, decrease, dramatically. In a theoretical case she cited that, say, the first repeat might happen at three months; the second at three weeks; the third at three days. On the other hand, keeping in mind, as I pointed out, that pneumonia can be a kind way to avoid the inevitably ugly death of fully developed lung cancer, was this the "no treat" episode?
• The Hospice RN was incredibly helpful and compassionate in this regard. We talked about my mother's overall health and attitude at this point: Her appetite, for instance, a big factor in decisions of this kind, remains excellent. Her spirit and will remain strong. She was, during this episode of increasing weakness, frustrated and angry at what was happening and continued trying to use her legs and feet, even when they were uncooperative. As well, and finally, I said to the RN, "I guess what I'm looking for is some evidence that my mother is resigned to what's happening to her right now. She isn't." Although we continued discussing this for a bit, prompted by my question about whether there are people who remain unresigned right up to the end (which there are, the RN confirmed; it is impossible, at this point, she said, to know whether this will be my mother's attitude...it's impossible for me to know this, as well...I can't even guess) it was this particular aspect of this particular development of crisis-related symptoms that tipped the scale toward a decision to treat.
• At this point I was given two options: The first was blood tests and a chest x-ray on Friday to see if pneumonia was showing. The nurse asked about the x-ray upon which Mom's May pneumonia was diagnosed. Although I don't have a copy of it, I remember looking at it and noticing that it said, "interstitial fluid build-up". As well, she asked about the time frame of the chest x-ray in connection with the beginning of treatment (the initiation of the IV antibiotics Levafloxin and Ciprofloxin), which was less than 24 hours. She asked about coughing, which my mother had not been doing other than minimal coughing in the morning (sometimes not even this much). We both noted that lack of coughing had been present during her last pneumonial episode. As well, we discussed White Blood Cell count. I reported that, to the best of my knowledge, my mother's WBC had not veered out of the "normal" range during the last episode and, in fact, historically, doesn't move out of the "normal" range, no matter what is going on with my mother. The nurse got a kick out of this (as well as other asides about my mother when she is acutely ill); she said something about how my mother has a wily tendency to "hide" indicators. This is more than the truth, it is my mother's body's MO. The second option, she said, was "preemptive treatment", in which an oral antibiotic would be ordered to begin that night and we'd continue on that course and see if some, if not all, of the symptoms cleared. After a bit more discussion, I opted for this. She called to clear it with Mom's Hospice Physician.
• When the Hospice RN called again to tell me that the physician had okayed preemptive treatment with antibiotics she wanted to confirm that I was familiar with possible side effects of Levaquin, considering my mother's extraordinary iron consumption (her recommendation regarding time lapses between doses of iron and Levaquin are that Levaquin should be administered two hours before or four hours after iron supplementation; although this is in disagreement with "the literature" on Levaquin, including the insert from the pharmacy, my experience, including past advice from Mom's former PCP, tells me that it would be best to follow the RN's recommendation) and her diabetes, she mentioned something I didn't know about diabetes and infections. "In the presence of infection," she said, blood glucose is likely to go crazy, either registering higher or lower than normal.
  "That's interesting," I said. "Over the last week or so her blood glucose numbers have been higher than normal." I cited number ranges, both "normal" and for the last week, which, upon examination, appeared to be registering 30 to 70 points above normal. The RN felt that this was a confirmation that infection was present. The RN also told me that she'd questioned Mom's Hospice Physician about what I might expect regarding time of recovery. I was surprised, as I hadn't asked, but pleased that she'd wondered on my behalf. The doctor, she reported, "...could be months." In other words, I reflected, considering Mom's current health profile, she may be pneumonia-bound for the rest of her life. I'm neither surprised nor concerned. We'll just take it as it comes.
• I took a moment, in our first conversation, to ask the Hospice RN about whether a flu shot, this season, would be advisable. I've been questioning this in my mind, considering my mother's noticeably declining lung condition. I mean, is it wise to risk a flu shot if she might react to it and get the flu? I consider this, now, a very real possibility, even though I didn't a year ago. Things are different, now.
  The RN mentioned exactly the same concerns that I had been contemplating. I'll run this issue by Mom's usual RN, but, at this point, I am as likely to opt out of the flu shot for her as I am to opt in for it. I will be getting mine; just so I'll be a bit safer for my mother to be around, assuming that the shot isn't as ineffective as last year's was.
  Along this line, the RN started to mention something about the pneumonia vaccine. I mentioned that my mother had completed "the series" and that the nurse who administered her last pneumonia shot, I think it was in 2007 (I'd have to check) said that she was protected "for the rest of her life", which I find a bit ironic, now. The RN said she thought the series actually lasted for three to five years. Whatever, I thought. "Little did she know," I joked to the RN, "that the stretch of Mom's life was already being dictated by lung cancer and she, indeed, would not need the shot again for the rest of her life." So, you know, as I look back on the pneumonia series, now, I see that its effectiveness can be overwhelmed by other conditions. This doesn't surprise me, either. Lung cancer is one of the Big Guns. I don't imagine much gets past its influence when one allows it to have its way, which we are doing.
• At 1825 I was on my way to the pharmacy picking up the antibiotics.
• Mom received her first dose promptly at 2000, when I awoke her from her nap. At this point she was still noticeably weak and cranky about being weak. She was also voraciously hungry and remembered my promise that she could have a Carl's Jr. Guacamole Bacon Burger and onion rings for supper. By the time she went to bed that night she was feeling startlingly better (I didn't think antibiotics worked this fast) and looked better, as well. The paleness, which had been encroaching from the side of her face, had disappeared. She stayed up until 0100, feeling good. The tongue thickness hadn't subsided, nor had the leg swelling or the difficulty using her legs, but she even reported that she felt better. She attributed this to the hamburger and onion rings.
• Yesterday morning the tongue thickness had disappeared. Her feet were looking better, although not yet completely normal. She awoke on her own before I had planned to awaken her. I was going to let her go until 1330, but she was up at 1300, sitting on the edge of her bed, her glasses on. She was planning on walking to the bathroom, as is her usual habit. I discouraged this but took note that her transfers were perfect and energetic throughout the day. Before napping, before rubbing her legs down in the evening and before heading into the bathroom to prepare for bed she was able, with ease and without drama, to raise herself from her rocking chair with her arms on the armrests. She hasn't been able to do this for the entire week.
• Last night after bedtime through this morning has been a bit of a challenge. Bless that "nursing" monitor, I heard it all! I noted that it took her breathing a long time to settle into a regular rhythm, last night,which meant that she was having trouble adjusting herself into a comfortable position; the monitor confirmed this. She awoke coughing and blowing at 0845. When I dashed into her bedroom, the wasn't ready to "get up for the day", but she wanted to go to the bathroom before going back to bed. I took advantage of her rising to administer an early breathing treatment, since we missed her 3rd one yesterday...too little time up between treatments. She transferred well and easily going into and out of the bathroom, stood well, was animated and chatty, her forehead felt cool to the touch. I can hear, through the monitor, that her breathing is not what it should be, but this is, at this point, a good thing, as I can also hear her attempting to expell congestion, which is good. Each time I hear a particularly loud attempt at expellation, I peak into her room. She's sleeping through all of this, although the monitor assures me that it's not the most restful of sleeps. Thus, I'm preparing for the possibility of a "hang dog" day...but, you never know. I'm going to let her go until 1300, as we decided when she laid back down this morning. Although I mentioned the possibility, last night, that, if she wanted, we'd try letting her walk into the bathroom for bathing, I'm keeping her options open on that one. If she's hung over from what has been a challenging night, I may insist on one more full wheelchair day, then reevaluate every time we come to a crossroad requiring leg movement.

    This was my first experience at deciding whether to medically treat acute symptoms since we've been on Hospice. I am full of gratitude to our Hospice company for the patience and compassion Mom and I were shown as I worked things through out loud in order to arrive at a decision. My fears of hospitalization have finally been allayed. I was assured by three separate nurses, during this episode, that all efforts are always made to avoid hospitalization when this is the desire of the client. I was astonished that even the minutest of my concerns and questions, such as whether the On Call Hospice RN had, in her experience, encountered people who died without ever having reached resignation, found detailed, concerned response. Once I decided to treat and settled on a course of treatment action was immediate. Finally, I was never "warned" about anything, merely informed of what could be taking place and what I might experience with my mother from this point on.
    Interestingly, although I didn't even think to consider pneumonia until the tongue thickening happened, once that possibility appeared, I didn't freak, nor did I buckle, at all, at the possibility that this is most likely going to be typical of my mother's trajectory and that more "To Treat or Not To Treat" decisions will probably be littering our path with increased frequency. As well, I am pleased that, during the worst of her weakness, I quickly figured out a way to use my body to support my mother's weight during transfers when it was obvious that she couldn't, and managed this without doing it in such a way as to compromise my back. On Wednesday, while chatting with the Hospice Social Worker after his visit with my mother, I reported to him that my next "fear on the horizon" was the time when my mother wouldn't be able to help in transfer and would become bedridden. He assured me that as long as my mother could sit up, there would always be some sort of "trick" to help her move from spot to spot, even if she became to weak to help in her own transfers. That, he said, is what the OT people are for. Then, less than 12 hours later, I found myself in this position and discovered a trick for myself, on the fly. This gives me great confidence; not that it will be easy, but that, no matter what happens, one way or another I will be up to it.
    Oh, wanted to mention, off topic, just so it's here, my mother did develop a knot on her back where her tailbone used to be (she broke it and it was removed when she was in the Navy) from the "cleaning drawers" collapse on Thursday. It doesn't hurt her, though, even when I press on it, and doesn't seem to keep her from sitting comfortably or, as we discovered yesterday, from moving, when she's of-a-body to move. Her left arm continues to improve. Although, when concentrating at my direction, she still doesn't seem to be able to raise it enough to use her slip-on blouses, I noticed, last night, when she was in the bathroom before retiring, she was raising her left arm so that her bicep was at a 90 degree angle in order to preen her hair (which needs washing).
    I also want to mention, so that I remember, when she was "fever sweating" over the last few days I detected a sharp sweat odor after each episode. Her sweat (little that there is) usually doesn't have a noticeable odor. I've never noticed this one, although it's been a looooong time since she's had fever sweating episodes here at home. The last ones were at the hospital and the rehab facility, respectively. During these times there were so many other competing odors that I never noticed this one. This morning I took extra whiffs when I was close enough to her to do so without being detected. Nothing, other than the usual odor of underwear that needs to be changed. Her forehead felt, as she often says, "cool as a cucumber". I can hear through the monitor that she has been settled down for awhile, now. Depending on how she appears when I enter her bedroom to awaken her at 1300, I may let her sleep until 1330 or 1400. I know the extra sleep, especially if she is in peaceful repose, would probably be good for her.
    So, on we go, hopping down The Tumor Trail. It doesn't seem as though she's "dying". It just seems as though she's living, more slowly, with a bit more difficulty, but continuing to live, nonetheless. You'd think, by now, I'd have developed some sort of idea how her life will end...but I haven't a clue, and, frankly, I'm glad I don't. Mom & I both like surprises.
    Later.
- posted by Gail Rae @ 12:40   email  this post