I wanted the title to warn all of my Devoted Readers precisely what I'm doing here. This post is not designed for your reading pleasure. It is not entertaining, nor is it remotely amusing. This is pure venting, plain and simple.
I do caregiving for my mother, who suffers from, among other things, COPD (Chronic Obstructive Pulmonary Disorder -- or maybe it's Disease), which is a relatively new catch-all term for bad lungs. It is incurable, untreatable, and progressive. Unless something else gets you first, it is a terminal condition. The overarching symptom is inability to breathe, simple enough, and the overarching cause is the ongoing build-up of plaque formations (scar tissue) in the parts of the lungs that absorb oxygen. Secondary diagnoses include, but are not limited to emphysema, chronic bronchitis, TB -- active or recovered -- and just about any other disease that affects lung function. Underlying causation is usually long-term smoking or exposure to other pulmonary irritants, pollution, second-hand smoke and so on, that set up the underlying vulnerability and secondary diagnoses, and/or an infectious agent, like pneumonia, the aforementioned TB, and so on. The actual trigger for the ongoing formation of scar trigger, the tipping point for the cascade, as it were, is unknown. There is, however a clear link to anti-cancer radiation treatments that pass through the lungs, such as post-breast cancer radiation. The progress of the disorder is totally individual to each patient -- in other words, it can kill you quick or slow or in fits and starts, but it will kill you eventually. In the meantime, the sensation of gasping for breath and absorbing no oxygen is like being waterboarded 24/7. Oxygen supplementation becomes necessary, at increasing levels. Even with constant oxygen flow, activity becomes more and more difficult as the body's need for oxygen at higher activity levels exceeds the maximum flow possible through supplementation.
With me so far?
In 2004, at 72 years old, my mother, already suffering from bad lungs from earlier years of smoking (she had quit smoking about a dozen years before), inactivity, and infections of various sorts, was given massive radiation after a breast cancer lumpectomy and lymph node involvement. No one ever warned her about this likely side effect, even with her lung history. The good news is there has been no recurrence of breast cancer in the last four years. The bad news is that almost immediately, she needed oxygen supplementation 24/7 and her activity level was reduced to virtually nil. Her home system compresses pure oxygen from the ambient air and delivers a constant stream through a long tube to a nasal canula, requiring little effort and allowing her free access throughout the third floor where her bedroom, bath, dressing room and sitting/TV area are. When she comes downstairs to the kitchen or living area on the second floor, or descends to the first floor to answer the door or get in her car to leave the house, she must rely on tanks. She finds them increasingly heavy and difficult to carry around, even though she has what I am told is the lightest portable system available. These small tanks are filled by the same machine that compresses her primary at home system. Unlike that system, however the portable tanks deliver air only on nasal inhalation, not continuously. Despite keeping uniform settings on all the gauges and nozzles, despite filling the tanks according to instructions every time, the delivery system on the portable tanks are somewhat spotty and they deplete at irregular rates. As a result, she can run out of air far more quickly than the 3 hours per tank promised by the manufacturer, or a slow-releasing tank can last much longer yet fail to deliver the oxygen she needs. While out of the house, oxygen deprivation from one or the other fault of this system has caused her incredible hardship and near-total incapacity -- she has had temporary episodes of lost vision, inability to move, near falls from weakness and dizziness, and complete bewilderment, due to low oxygen levels to the brain. She makes no more than one trip a day to the second floor, and goes to the first floor to leave the house only once a week. She must stop halfway down or up each flight for several minutes to catch her breath, and sit immediately when she reaches her destination, again requiring several minutes recuperation.
It has become increasingly clear over the last few months that the maximum setting on her home device is too low for sufficient oxygen delivery even when she is totally immobile. On the last maintenance visit of the machine supply company, I asked the minimum-wage, minimally-trained tech what could be done. "Nothing," he said. Mom accepted this verdict. I did not. After five minutes of rephrasing the question again and again, a 10-watt bulb finally appeared over his head and said, oh, there is another machine with a higher setting. He'd ask for one when he got back to the office. The next day I called the company, and of course they had no record of any such request. I had to re-explain for another 10 minutes, and finally they said, oh, yes, we'll order one. I called back two weeks later and re-invented the wheel, and was told it could be as long as several months, supply was limited, but oh yes, Mom'd have it as soon as it came in. I was free to call back to check, but it wasn't necessary. And no, said everyone, every time, Mom did not need anything from her doctor to authorize her receipt of this new and improved machine.
Another symptom, related or not, is her very rapid loss of short term memory and cognitive function. At total rest, with sufficient oxygen, she can still do what she needs to, but not if it requires short-term memory. With insufficient oxygen, whether from delivery problems or any activity, she is cognitively in very poor shape. The cause of the ongoing loss has not been diagnosed. Her lung doctor believes it is related to lack of oxygen but there have been no neurological tests done. Mom confessed that she believes she is having small strokes. The change is readily apparent even on a day-to-day basis, and shocking to those she has not seen in a while. She is an actress with great charm and social skills, and can keep up a brilliant pretense of competence and normality for short periods, but even this is slipping. I still suspect that a chronic lack of oxygen, just as a matter of common sense, will have both acute and chronic effect, killing brain cells that don't grow back.
So where have I been, as my mother goes to hell in a handbasket? Why have I not taken this poor soul in hand and done battle for her to improve her lot?
I do as much as I possibly can, engaging in a battle of wits with the unarmed to get her the best care availble, fighting with sulky appointment nurses, clueless laboratory and testing personnel. Worst are the oxygen equipment supply and maintenance people, who seem to have no clue that they are literally responsible for her lifeline. They handle requests with all the urgency of, say, a backordered restaurant supply company asked to deliver forks. I go with her to appointments and try to be her advocate to rushed and unconcerned physicians. I am happy to do this. I don't need applause or approbation, this is my job. I have been well trained to make these efforts -- as a lawyer, even a retired lawyer, I can be as squeaky and persistent a wheel as I am allowed to be without undue stress. But I face a formidable opponent, without whose cooperation I am powerless.
My mother. The patient.
As she confessed to me the other night, "I've run my life through denial, it's worked well so far, and I'm too old to change." She says she still thinks of herself as a thirteen years old tomboy, climbing trees, even as she blacks out from simply standing from a seated position. I cannot get her to engage or cooperate, or even acknowlege the situation in the first place. She will not admit a need for help to me until she can present me with a dire situation that could have been prevented with an earlier request or simple statement of fact. She admits to symptoms only when she first exacts a promise that I will do nothing about it. She outright refuses any neurological workup. She has been told from the outset of this condition that she needs to go to a lung function workshop to learn coping strategies and breathing training, and she has refused again and again, or puts it off. Rather than address the problem, she hides symptoms. I have to hear things from others, either things they observe or admissions she makes to them and not me.
She treats this as a joke. She wants to be entertaining. I can't react to this with laughter any more. I can't seem to reach her directly or indirectly in order to enlist her help. If confronted with her own passivity and resistance, she takes it as a personal criticism and her feelings are hurt.
I want to respect her independence. I want to let her handle what she can. But she's doing a lousy job in a life-threatening situation. She can't seem to understand that her own self-disregard does not happen in a vacuum. I have to watch my beloved mother struggle for breath, for memory, to stand upright, I have to repeat myself over and over again, answering the same questions, giving the same information, I have to worry when I'm out of the house for an hour or a week that something will happen and she won't even tell me if it does. My very concern is an irritant to her, and I have no productive outlet for this concern.
OK, so that's the status quo. I have been re-energized and gotten second and third and fortieth winds in this job, support from friends, and some stern dressings down from other friends, in a loving way, to sieze control back. Lately, I've felt very good about things, not slipping into total codependency, drawing boundaries, being very clear about what I'm doing and why.
Until today triggered this rant. The cleaning lady, Lori, went upstairs and saw Mom struggling with a Gordian knot in her air supply tube, a 50-foot line from the compression machine that drags after her. Mom admitted that her supply was completely cut off. Lori untangled it, yet some bad kinks remained. She wrapped it tightly around the bedposts to straighten it out for a while, which solved the worst of it, but clearly a new tube was needed. Mom would never tell me, Lori knows this, so Lori told me immediately. I went upstairs to see if we had a replacement (Mom lacks the initiative to open the drawer where these supplies are kept). There was no replacement. I asked if she'd call the supply company. She changed the subject. I could tell she still wasn't getting a proper air flow. I went downstairs and called the company, and after listening to a lecture telling me that I should have asked them to replace it on their last quarterly visit a month ago, said they'd drop one in the mail tomorrow and it should arrive by Friday. I said that considering that Mom is gasping like a fish, that was insufficient. The little snip said it would have to do. I also asked about the new compression machine. She had no idea what I was talking about, I'd have to call back when the supervisor was there that afternoon.
I will not recount each and every step, but I have spent the last five hours nonstop dealing with morons, calling supervisors, calling manufacturers, calling other supply companies, calling corporate headquarters, having callbacks, just to get the fucking tube by the end of the day. As regards the new machine, a separate but ongoing issue for two months now, I learned that we can't get there from here, or we wouldn't have if I hadn't checked every single contingency with every single idiot along the way. Even all the steps had been in place for the order of the new machine, and they are only complete today because I did the company's work for them and hollered at a few people, they would never release it to us. Turns out that Mom did in fact, depite repeated assurances up and down the line that it was not necessary, need a doctor's authorization to receive it. This then triggered several hours of negotiation with various appointment secretaries at various specialists, none of whom would be in the office until doomsday, or had an open appointment until a week after that.
Finally, a partner of her regular pulmonary specialist will see her tomorrow for the authorization, on the condition that she reappear for full function testing and a longer appointment with the regular guy early next month.
All so my mother can breathe. Just breathe.
The salient social note here is my mother has solid-gold insurance and Medicare and even if not, money would not be an issue.
Just imagine if I had to fight the insurance company too, or if she had no insurance or money. Or me. She'd be dead.
OK, I'm done.
Wasn't that fun? No, but don't say I didn't warn you.
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