Mom's performance in PT yesterday...
...increased my optimism regarding our immediate future. She walkered, slowly but surely, for probably a good 30 feet, again. She had to rest about two thirds of the way through but resting "in flight" is common for her and we've already incorporated that into our home routine. She went up and down a set of three steps once. All that will be required of her, here, is negotiating two steps at a time, either up or down, followed by significant "rest stops". She was alert and curious and it was these two qualities that kept her going. As well, her immune system seems to have adjusted to the eccentric pathogens in the facility environment, so she, finally, no longer appears to be conducted daily skirmishes with whatever is floating around there. Our home environment hasn't changed since she left so I'm assuming that her immune system will remember how to deal with it. We conducted, by ourselves, two perfect toilet sessions in the bathroom rather than on the bed, one involving a change, both involving two stand-ups. Essentially, she's doing everything that guarantees our return to a more or less normal life at home for the time being; just a little less and a little more slowly. I can handle that.
    Equipment has become an interesting challenge. Some lot of the equipment I thought would be appropriate isn't. The bedside bars, for instance, extend more than halfway down her bed, which, if I used them, would make getting out of bed harder, rather than easier. Some of the equipment, the over-the-bed table and the bedside commode, will be used in different capacities than intended. We will definitely be using a different walker and I've already been able to donate the one we've been using. However, it looks as though, for the time being, we'll be using the same wheelchair. It seems that only standard versions are covered by Hospice/Medicare, all of which are too wide to push through our bathroom door, so I'm hunting through the supplies of charity organizations to locate a chair that is narrow enough for our house and low enough to make sitting and standing easy for Mom. Some of the research I've done has suggested to me that a child's wheelchair might be more appropriate for her. Grab rails in our hall will probably have to be specially designed, if we can use them at all, because of its narrowness.
    As soon as Mom arrives home I'm going to begin searching out PT day programs that would cater to her interest in interacting with others. She's developed quite a reputation at the facility for socializing with and encouraging others in therapy. I'd like to see her continue this. As of this evening it occurred to me there may be an outside chance that she might be accepted as a volunteer "cheerleader" in the facility's PT department. I'll be suggesting this to someone this weekend in order to explore the possibilities. The official Adult Center Day Care program here is, unfortunately, well below her abilities and consists mostly of people who are far below her alertness and interaction levels, but I'm sure there must be others out there that would be appropriate. I'm also hoping that within a week or so, with an intermediate platform that I will either buy or devise, she'll be car mobile with chair. This seems, as of today, possible. Thus, if we can't find an appropriate PT program, I can at least get her out a lot more so she can "people watch" and "people interact". Her desire to interact with others has surprised both her and me; thus, if the PT stay accomplished nothing else, it reminded her that, as much as she likes times of social contraction, she likes times of social expansion, as well.
    We will, of course, approach all of this easily and with care. She's going to continue to have slow days, sleep days, etc., probably more as time goes on. From the way things have gone since 5/18/08, though, I don't expect that the speed or angle of her trajectory will change much. I mean, for at least a year, if not more, we've been dealing with the obvious influence of her lung cancer...we just didn't know we were. The only real difference, now, is that I am determined to keep her out of all medical facilities as much as possible. I think we'll be able to accomplish this without too much difficulty.
    Mom has decided that her "Welcome Home" dinner will be pizza, at the suggestion of one of the CNAs with whom we've become very familiar. I'm going to order flowers, too, to be delivered late in the afternoon.

    Mr. Man just sat on my keyboard while I was making myself a cup of coffee and froze my cursor by turning off the computer touchpad, so I had to take a few mintues to figure out how to turn it on. In the meantime, I published this post before I was finished.
    I had one more item about which I wanted to write. While I've been attending to my mother I've noticed two other relatives whose presence is also fairly ubiquitous. One is the child of a patient; the other is a spouse. I've briefly spoken to the former: We acknowledged one another's presence and duties in passing. The other, though, the wife of a man who is recovering from his second heart valve replacement and I have barely had a chance to "eyeball" (as my father would have said) one another. Yesterday I, literally, ran into her in the front hall as I was exiting the main bathroom, which I use because I can no longer tolerate the mold smell of the bathroom in my mother's room. I asked her if she was "the child or spouse of a patient." She quickly corrected me, "I am my husband's medical advocate."
    I grinned. "I'm so glad to hear you use that word, advocate. That is what I'm doing for my mother, but I've used that term a couple of times here and it gets a stunned response."
    She laughed. Her laughter had a decided edge. "I'm not surprised. I'm barely tolerated here," she said.
    She went on to enumerate the problems she's been having with the facility and the hospital during her husbands recovery, which include:

• Discovering that she had to train not only the CNAs but the nurses at the facility in how to clean her husband's surgical wound and handle his temporary catheterization and eliminatory abnormalities. It seems that one of the by-products of his surgery is that one's body takes several days to readjust itself and this causes a multitude of problems with many systems, including elimination. She continues to be beside herself with having to retrain shift after shift of workers in order to ensure that her husband is adequately protected from infection and other complications while healing.
• Inadequate hydration is causing a particularly ticklish constipation problem with her husband, which is delaying his fecal elimination system's recovery.
• She encountered numerous problems with the medication schedule with which he was transferred from the hospital. She still hasn't determined whether this problem followed him from the hospital or originated at the facility.
• She had some sort of transfer problem that involved the Medicare personnel at the hospital miscalculating his readiness to be released into rehab.
• She caught a fairly high level facility staff member misrepresenting her husband as demented, which he clearly is not, and lying about having seen him.

    Somewhere in her litany she mentioned that she is retired from the medical insurance industry. She didn't mention whether she was in sales or administration but she told me this in order to underline her knowledge and understanding regarding medical rights and practices when combined with insurance coverage. She mentioned that she is considering legal counsel, although she is unsure whether to approach this possibility from the perspective of enhanced advocation or defensive action.
    I was surprised that, despite the differences in her husband's necessity for being where he is compared with my mother's and the effect of this difference on the potential seriousness of the impact of the problems they're having, their problems echo ours. A few days ago a very helpful reader wrote me with a piece of advice that provided a much needed calming perspective on Mom's and my situations with both the facility and the hospital: She said that at some point one has to decide, as an advocate, whether the expenditure of energy necessary to go after the medical industrial complex is worth it in particular situations. In my mother's case, since I have been able, on my own, to quickly (albeit continually) overcome our problems and set circumstances to rights, I decided that, no, it isn't worth it to continue to irritate myself over the inconsistency and error implicit in this broken system. However, speaking with this woman reminded me that, in many cases, such grappling is a matter of life or death.
    MPNP is considering going into medicine. He's already begun his journey, although he hasn't decided exactly where he wants to formally pursue his medical education and training. He and I entered into an exchange, yesterday, both fascinating and troubling, involving the concerns he is facing in regard to his desire. All these concerns center around whether he even wants to attempt to practice medicine in the current U.S. medical industrial complex.
    The way we handle the business of medicine in this country isn't only a problem for patients, it is also a problem for practitioners. The source of the problems, though, is the same for both: The primary focus of our current system isn't treatment and healing. This isn't to say that practitioners don't enter into the profession with the noblest of motives. It is to say, though, that those motives are undermined by our current medical delivery system.
    A few weeks ago I watched a run of episodes of the series House. Since I was completely enwrapped in dealing with the medical industrial complex on my mother's behalf at the time, it was impossible for me to watch these episodes without wondering, "Where is the paper and profit pushing reality in these episodes?" Occasionally a segment of an episode would approach a concern. I remember one episode, in particular, involving the repackaging of a popular medicine in order to up the profit margin. I remember another, from which I quoted in a much earlier post, that outlined the antipathy of the medical system toward caregivers. Yet a third involved the introduction of a board member who almost railroaded much that was good about this fictional hospital's medical delivery system in favor of higher profit. I do not, however, recall any episodes in which a patient or medical advocate had to grapple with the types of concerns that regularly plague me such as: Discovering that medications are inappropriate, either by type, or dosage, or because of medication interaction, having to figure out appropriate medical regimens on their own, then having to repeatedly remind medical practitioners of these discoveries and defend them, as well; having to decide whether to have medicine intervene in a problem at all, knowing the high chances of having the problem inadequately or erroneously addressed; experiencing "medical burnout" in which the patient or advocate becomes so boggled by the constant need for oversight, which, itself, is likely to be as inadequately informed as the procedures pursued by the practitioners enlisted, that the patient or advocate willingly drops the ball, crosses his or her fingers and hopes for the best.
    During MPNP's and my conversation we found ourselves speculating that many of the problems now plaguing the practice of medicine may very well be underlain by a cause no one has yet addressed in any but speculative terms: Human overpopulation; and that the problems, themselves, may be one of the primary solutions. This method of unconscious ameliorative address, though, will be uncontrollable and its likely survivors will not necessarily be those we assume: The self-protected rich. Are we really, as a species, too large for us to handle? If we are and we don't address this cogently and soon our medical dilemmas make take care of this problem for us long before (or in conjunction with) the devastating effects of human induced global warming thin us. From a removed perspective it may not matter which agent intercedes. From a personally human perspective, though, we need to figure out, soon, whether we even have the energy to intervene in our future as a species of the Earth.

    Sorry about the lecture. I needed to unload. I'll carry on with personal reporting...
    ...later.
- posted by Gail Rae @ 04:54   email  this post