Another Hospice RN visit today...
...and I want to record the highlights before some episodic wind blows them out of my conscious mind (which has been happening a lot, lately) [This post started 11/18/08]. Some of the detail is sketched over at The Dailies post for today [11/18/08], which won't publish until 2359 this evening [the evening of 11/18/08]. I'll fill in the exact linking url later. Thus, I'll try not to repeat myself but, well, I'll probably fail at that endeavor. Here are the highlights:

• Hospice uses both weight measurement, which is a bit difficult to get on my mother, and upper right arm measurement to determine what my mother's weight status is (whether she's gain weight, losing it or her weight is remaining steady). Today the Hospice RN opted for the latter. It has seemed to me that Mom is losing a little weight, particularly evident in her upper arms as she sleeps, her upper right arm being the one most visible to me when she's sleeping. As well, she has been eating less...not necessarily noticeable to the untrained eye but definitely noticeable to me. On occasion, lately, she's even refused dessert, which is normally unheard of in her food parlance. Thus, I was surprised to discover that our RN measured her upper right arm at 11.25" today, a full half inch larger than his last measurement, which would have been somewhat over a month ago or, possibly earlier (I didn't think to ask). When I told him of my surprise and explained what I was expecting, he mentioned that consideration of such measurement always includes "parallax"; which is to say, assumption that positioning and tightness of the tape measure is never the same twice. So, I'm now looking forward to yet another weighing in, although I'll allow that to be scheduled by the RNs who visit.
• I haven't been back here for awhile, thus I need to set up this particular point by mentioning the following incident: Very early last Sunday morning, about 45 minutes before Mom retired, she had another incredible pain episode, exactly like the first to which the immediately previous link is attached. The cause became obvious through this episode. It was easy to see that she had once again dislodged her nasal cannula by incessantly wiping her nose (a habit she developed some years ago) to the point that both tubes were directing O₂ directly past her nostrils. At the point at which I could tell she was in sudden, hard pain, her lips were also turning dark blue and she had begun to gasp. It all happened very quickly, so I'm not sure how long the cannula was dislodged. At any rate, the pain was exactly the same and, after the cannula was replaced, she responded exactly as she had before to 500 mg acetaminophen, which banished the pain within 20 minutes. The replacement of the cannula, of course, took care of the gasping. There never was any question about whether to use morphine. I figured, what worked before, acetaminophen alone, would work again.
  After the episode I put all the detail together and realized that the pain was being caused by the unusual work required of her lungs and diaphragm when she isn't getting enough O₂. This got me to thinking about the mechanism of pain relief catalyzed by acetaminophen versus morphine. I wondered if, for instance, the reason the acetaminophen worked is because it relieves inflammation and if the extraordinary labor of her lungs and diaphragm would have produced inflammation, as overworking just about any muscle tends to do. I also wondered if morphine relieves inflammation and, if so, which would be better to administer.
  I put all the above before the Hospice RN today. First, he told me that, often, although we know of many substances that relieve various types of pain and can classify them according to which types of pain they relieve, we don't necessarily know why they work. [A little further research on morphine confirmed this; the literature often states, especially in the case of respiratory disease pain, that "we" don't know why morphine works.] What we do know about morphine is that it interfere's with the brain's CO₂ receptors, thus it tells the body that it is no longer in hypercapnial distress, even though the body actually is. This relieves the breathing response and, in one short tract that I read (I lost the link to it earlier, unfortunately), it also actually decreases hypercapnia, to a certain extent (although, again, "we" are not sure why this happens). As the nurse put it [He substituted the word "dysthemic", pronouncing it "dis-thee-mik", for "hypercapnitic"; "dysthemia" refers to depression, usually "mental" in origin; however, in a sense, he was right, as it is the suppression of O₂ in the body that often accounts for hypercapnia.], the body may remain short on O₂ and long on CO₂, but it doesn't care. Thus, this is why morphine is often used to address "air hunger", especially when O₂ delivery cannot.
  He went on to tell me that one of his clients addressed the same pain with ibuprofen; which put that back on my list of possible pain antidotes; perhaps the first course of action in further episodes of incredible pain caused by my mother's diminishing ability to breathe, which will surely happen in her future, unless something else takes her out before respiratory failure does the trick.
  The reason I was curious about all this is because, in accordance with my mother's wishes, I would prefer to allow her to remain as alert as possible AND without pain AND without significant respiratory distress (it could be said, actually, that she is, at this time in her life, always at some level of respiratory distress; she's just very good at tolerating the lower levels, probably because this permanent condition of respiratory distress has developed so gently). If the second can be accomplished without morphine, then I think, considering the very likely fact that my mother is opiate innocent, as long as we can get away with pain relief without morphine we may as well continue on the NSaid track.
  Our RN did come out on the side of possibly, at some point before morphine becomes absolutely necessary, using it during these episodes in the interim would help develop tolerance. But, I have to consider, as well, that my mother's preference is in favor of alertness...thus, at this point, my vote is to wait until tolerance is necessary before developing it.
• The subject of respite came up, and, surprisingly, I'm glad it did. I have been assuming, considering my one extremely hectic and non-restful experience with Hospice respite that, sadly, it was out of the question for me. The subject came up, yesterday, during a conversation in which the Hospice RN, after a prelude of apology in case he is misinterpreting my actions, attempted to convince me that I can relax regarding my mother's care: That, unbeknownst to me, my efforts on behalf of my mother receive "accolades" among those Hospice employees with whom we've come into contact, that I am "surrounded by professionals" who are ready and willing to help and that between the excellent care my mother receives from me and from Hospice (which is true, she receives absolutely top-notch care from Hospice) I should consider more fully using the resources available to me through Hospice, especially in regard to allowing myself some time to recuperate, here and there.
  In response, I explained that, in fact, I was much more relaxed regarding caring for my mother than he understands...and this is true. While I continue to ask questions regarding technical medical stuff that is going on or may go on and while I continue to meticulously perform as much tweaking of her care as I can, in fact I am no longer obsessing over many of the big aspects, like Hospice's appropriateness for her and Hospice's care oversight of her. I have absolute confidence, now, in both and am not stressed about either; so much so that I am stepping back on my obsessive measuring (dropping taking her BP, for instance, was a major relief for me).
  I continued that I am so relaxed with her at home, now, that there are some nights (not many, but a few, maybe one per week), when I do not hesitate to turn off the sound monitor when sleeping because my mother coughs a lot at night, which triggers a reception on my end and usually awakens me. I'm getting better at sleeping through normal sounds but some nights I am so tired that I know better than to subject myself to disturbed sleep and place confidence in, one, my usually high ability to respond to odd noises floating the short distance between Mom's bed and mine and, two, The Little Girl's hyper vigilance of my mother. I am at peace, on these nights, with the possibility of something untoward happening and consider that there is no such thing as me responding "too late".
  I also told him that I am not a person who rehashes completed decisions. If it appears that I have made a mistake in caring for my mother I do what I can to ameliorate the results, take notes for the future, shrug and go on.
  I went on to explain that if there is any area of our life about which I am "stressed" it is the area of respite. Especially lately, I've very much wanted to have a couple of days or so of respite but I cannot, in good conscience, do this in light of my experience telling me that I will be subjecting my mother to:
  • bedsores (one of which she developed, in her last and only respite stay, from a pressure bruise she developed at the rehab facility);
  • lagging appetite which was chalked up to "failure to thrive", "she's old, that happens," etc., until I intervened;
  • dehydration, which precipitated frequent bouts of bowel back-up and frequent administration of laxatives.
  [Continued 11/19/08 at 1034] All of this required such oversight by me that my "respite" turned out to be worse than having no respite at all.
  After telling me that caregivers such as myself are qualified to receive five respite days per every 30 days, our RN explained that all of my concerns could be mitigated by a careful and thorough selection, investigation and preparation of the facility in which my mother would be staying. He mentioned, for instance, that, in regard to the appetite problem, I can make it clear, with the confirmation of Hospice, exactly what my mother's appetite is and that if she should lose her appetite it would be imperative that reasons outside my mother's health profile be considered. I had to admit to him that the occasion of my mother's first respite stay was, indeed, negotiated so quickly and the experience was so new to me that I did not even think about doing what he suggested. I agreed that it sounded as though such a preparation could, indeed, alleviate quite a few of my concerns and even more of the deleterious possibilities for my mother surrounding such a stay. By the time our conversation ended I was telling our RN, with renewed confidence, that I'd like to consider and prepare for a respite sometime between Thanksgiving and Christmas.
  Thus, much of yesterday afternoon and evening, one track of my mind was busy compiling a strategy for approaching the determination of a suitable respite facility and delineating the concerns I would want to address with a possible facility. This is the list I've devised so far, most issues of which were among those I had to confront and negotiate while my mother was in respite and rehab facilities; a few of which have become even more critical in the intervening months; one of which is a new issues:
  • The Appetite Problem: I figure I can negotiate this by making sure I am there for every evening dinner hour...I don't think this would bite into my respite experience, as long as I could confidently leave her in the care of the facility the rest of the time. I would also be available for nightly leg rub downs, which are critical to our relationship and my mother's overall care. In the meantime, though, I would want to insist that if and when my mother refuses food I be called and the actual reason for this determined and negotiated.
  • Pressure Bruises/Sores: There should be no excuse for urine rashes, pressure bruises and pressure sores. Part of the problem at the previous respite facility is that, even against my advice, the staff continually put my mother in a recliner. My mother doesn't actually like recliners after the first few minutes. They bother her lower back (in which she experienced continual low level pain during her respite stay) and, if she can, she fidgets in them. As it turns out, having her in the recliner so much is likely what caused the pressure bruise to open and become a pressure sore. But, almost every time I visited my mother when she was not at the table, she was in the recliner. I would be told "But, she likes it!" Thing is, if the discomfort is low level my mother doesn't complain. As well, if she is fairly unfamiliar with those surrounding her, being a genial person underlines her reluctance to complain. Bottom line: Keep her out of recliners, even if she appears to enjoy them. Period. No excuses.
  • O₂: Absolutely appropriate and timely attention to my mother's ₂ hook-up is critical. She needs to be at least on 4/lpm when sitting, 5/lpm when moving and 5/lpm when sleeping. Period. If she begins to gasp or her breathing becomes labored while sitting: First, the positioning of her cannula needs to be checked; second, she needs to be walked through blowing her nose quickly and cleanly; third; the level of her tank and the state of her tubing (is it restricted by being placed under furniture, the wheels of her chair, etc.) needs to be checked. Under no circumstances is her level of oxygen to be below the levels prescribed above. As well, Blood O₂ level is not to be used to determine whether she is at an appropriate O₂/lpm. With my mother, Blood O₂ level has little relation to whether she is breathing easily. CO₂ level is more reliable; and, usually, can't be quickly measured.
  • Pain from Breathlessness: [This is a new aspect of her care.] If she becomes breathless because of lack of oxygen, for any reason, and begins experiencing hard pain in her back from labored breathing, under no circumstances are any narcotics to be issued without me being consulted. The first line of defense should, at this point, always be either 500 mg of acetaminophen or 200 mg of ibuprofen (the first is preferred and, so far, is the only action that has been used or required), administered with a starchy snack. A minimum of 30 minutes from the time of administration of either of the two medications is to be observed before further action is taken, as, so far, the above first action has been all that has been necessary to alleviate the pain completely.
  • Fall Risk: My mother is a definite fall risk and must be managed as such. This includes the attacment of monitors, not being left alone for very long and adequate assist when mobilizing from one point of sitting to another.
  • Constipation: With adequate hydration and diet, including 4 ounces of prune juice every night, laxatives should not be necessary. If they are, I should be notified before administration and the mildest must be administered first.
  • Cleansing after Bowel Movements: She must be cleaned. She is incapable of doing this herself. Particular attention should be paid to the area around her clitoris, as fecal matter always migrates to this area when she is moving her bowels.
  • Sleep: Although my mother sleeps a lot, she can be roused fairly easily and should be able to negotiate being awake for at least 8 hours a day, if not more, with a nap. She should be roused, dressed and encouraged to participate in up-time every day, once after night sleep and once after a nap. It is very common for her to refuse arousal after sleep times. Unless there is a health concern, she should be roused anyway.
  • Medication: All medications prescribed, including supplements which are typically prescribed by me, are to be administered on schedule, no excuses. Administration is to be monitored. This works best if she is given one or two pills at a time followed by a sip of liquid. Occasionally she needs to be reminded not to chew pills or roll them around in her mouth until they soften. She doesn't have any trouble swallowing.
  • Dehydration: My mother typically will drink very little if she is not monitored. Simply telling her to drink and walking away doesn't work. She needs to be reminded, frequently, to pick up the container and drink and needs to be monitored at these times. No excuses. Her lack of thirst is a years' long phenomenon. If the current wisdom of "drinking only when she's thirsty" had been applied from the beginning of her lack of thirst, she would have died at least four years ago from complications due to dehydration. The facility should be aware that one of my most important and frequent duties is getting her, in a timely manner, from one glass of liquid to the next so that she consumes at least two quarts of liquid (not including what she receives in her food) per day. Easily reachable and negotiable liquid should be left well within reach of her when she is sleeping.
  • Her and Me: If she asks for me, I am to be called, no matter what time of day or night.
  • Diet: Should be appropriate to her diabetic status, although her status allows a lot of leeway. An attempt should be made to include as much fiber as possible. Try to keep her blood glucose (which should be measured before breakfast and before dinner) to a low roar: Under 200, if possible. Otherwise, if her BG rises above this level in the evening, a third glipizide before bed should get her back under 200 before morning. Insulin is not to be administered without consulting me.
  • Finally: In taking care of her at home, I have been able to keep her, for years, from dangerous falls most of the time, have kept her well hydrated and well fed, have successfully seen to it that she is medically managed appropriately, have only a minor problem with constipation, have negotiated her prodigious sleep habits well enough to keep her moving enough to keep her from ever developing a bedsore under my care and have honored her strong will and her high spirits, even during this latest period of her incrementally declining health due to lung cancer. I expect no less from a care facility.
  Yesterday evening, after contemplating all of the above, I suddenly realized that my experience tells me that what I want to be able to expect from a care facility is not possible, at this time, for several reasons, not the least of which is that no one in the care business, no one (except owners and share holders, perhaps), is compensated well enough to pay little more than lip service to my requirements. I wondered if, knowing what I know about the care business, from experience and research, I even have a right to expect any of what I do expect. That's why I bolded and italicized the last bullet up there. My first duty, I think, will be to present these (and any other expectations I discover as I think about this...I'm sure the list above is incomplete) to our Hospice RN and ask him if belief that my expectations are too high for the current state of the industry is correct. As one of my sisters once cautioned me, because of the circumstances (including my emotional ability to risk everything in my life to care for my mother) that surround my in-home care of my mother, my standards for facility care are probably way too high at this time in this country. What I consider inadequate care, she explained, is probably copacetic with many other caregivers. I'm sure she's right.
  Thing is, I'm tired of either bending to or making up for the industry standard. I'm more tired of doing this than I am simply taking care of my mother without respite. As I've said before, and I'll say it, here, again, in my worst, most exhausted (physically and emotionally) state, I am still capable of giving better care to my mother, moment by moment, than the industry is capable of delivering, day by day.
  So, the result of all this is that by late last night I had worked myself into light despair.
  I don't know. I'll continue, for awhile, anyway, to explore the possibility of another respite but, you know, I'm just tired of having my expectations dashed. The dictate is, people should learn from experience. I believe this. It works for me. My experience tells me, overwhelmingly, I have reason to worry when my mother is under care of the the professionals and I am not around to oversee that care. And, yet, the industry continues to yell at me, "Trust us, trust us, trust us." Wouldn't it be stupid of me, considering our experience, almost all of which has been documented in these journals, to, once again, initially trust an industry that has proven itself to me to be totally untrustworthy and then, once again, find myself frantically performing oversight, thus actually designing an even more stressful period for myself than I would have without respite care simply to get my mother through yet another one of my respite periods?
  This is where we are in the caregiver game, in this country, at this time. Does it do either my mother or me any good to act as though we aren't? How much "trust" am I expected to place, how much "oversight" am I expected to perform, before the industry stops telling me that these professional care circumstances are my fault because they can be controlled by me without undue stress and with sufficient oversight, and the industry finally puts some that misplaced you-can-control-your-experience energy into reforming their care industry?

    So, anyway, that's where I am, right now. Optimistic yesterday, fearful today. And, it's just about time to awaken my mother. The Hospice Social Worker is due for an appointment later. Maybe I'll discuss this with him. Maybe I won't. I'm not sure.
    You know, bottom line is, I'm trying to avoid circumstances that would lead me to consider a law suit. I don't like the idea that the medical and professional care industries are amenable to change only through law suits, not to mention the fact that I simply don't want my mother or me to find ourselves in the position of considering a law suit, because that presupposes bad care and all the dangers that accompany bad care. Through Hospice I am now able to relax about my mother's medical care, after six years. Unfortunately, and, believe me, Hospice is not to blame for this, I am not able to relax about the possibility of in-facility professional care for my mother.
    What about having a volunteer a few hours a day to sub for me so I could "get out"? You know what? I don't want to relax by "getting out". I want to relax by staying in, doing things I want to do here at home without being interrupted by the requirements of my mother's care. In this small, snug home, I don't see that happening, even if a volunteer were to take over care here and there for a few hours. I'd have to get out in order to get away from caregiving. And, you know, I already know, that wouldn't work for me. I relax best at home. It's a part of my character. Something tells me, ignoring my character would be one of the most stressful actions I could take.
    So, you know, consider this post in the spirit in which it is written: Venting.
    Shaking head. Closing eyes.
    Later.
- posted by Gail Rae @ 12:15   email  this post