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Whirlwind of a day and probably should not have too many like it. But it felt good that I could pull it off successfully at least this once. Here is a blow by blow of how it went. Warning: this may be the most boring post I have done yet, or not...Read on at your own risk.
The morning nurse was Don, who usually comes on Sundays, not Elissa my regular one, and he woke me by coming more than an hour earlier than Elissa does. I was quite groggy. I had taken the 2nd dose of Xyrem at 4:40 a.m. thinking I could sleep till 9 the next morning instead of only 7:45. Don gave me an amazingly painless IM injection of Bicillin, in the arm no less, for which I am eternally grateful. He is now my official Injectioner. No one else will do. After he left, though I wanted more sleep, I stayed up, knowing that if I went back to bed after taking the morning meds I was apt to sleep till noon, even with an alarm set and today was my turn to see Joe. In fact, my ride was due to pick me up between 11:30 and 12:30.
Staying awake was a problem, though. I sat in my recliner to read THE QUIET ROOM, another memoir of “madness” by a woman with schizoaffective disorder (written in the mid-1990’s – some of you no doubt read it long ago – possibly to be discussed here when I finish it) and found myself dozing off despite every effort not to. I needed coffee, I decided, and quick. I poured boiling water through the coffee in a filter, Melita style, and soon was caffeinated enough not to have another sleep attack like the two I’ve had within the space of two weeks (the scary ten-second-warning-before-I-crash and-fall-asleep-right-where-I-am kind). By 11, I had washed a sink full of dishes, read about 30 pp in the book, read and written who knows how many emails, and changed my clothes umpteen times, wanting to look good for Joe but in the end settling for all navy blue: a navy “denim” sweater and “new” jeans bought at Goodwill. I packed a few items I’d made for Joe: a scrubby sponge and a pencil with sponge material wrapped around it for thickness, with the scrubby material glued to the tip, plus a piece of rigid clear plastic with the alphabet printed on it in big black letters.* I added my cell phone and book and was just finishing up when the intercom buzzed. My ride was downstairs.
*Explanation of these items: Joe cannot turn the pp of his magazines, his fingers simply can't grasp them. But the plastic mesh on the back side of a scrubby sponge will. If you take one dry and brush it against the page, it will pull it away from the others. If you don't believe me, try it. I found this out by trial and error, in a desperate attempt to find anything that would work in a low tech way. The built up pencil is just another method of using the scrubby mesh to do the same thing, in case it is easier to manipulate a thick pencil than a flat sponge. The alphabet on clear plastic was meant to imitate an Eye Link, or at least what I believe an Eye Link looks like. What I know you do with one is this: Joe would look at a letter of the alphbet on the plastic and I would meet his gaze. Because he is looking at a letter, and I was looking at his eyes, I would be looking at the same letter. So I would know the letter he wants. That way he could spell by looking alone, and I could read what he wanted to say. Pretty nifty, eh? The ALS Association is supposed to send me one, but it hasn't arrived and hasn't arrived, so that I think they may have forgotten...I am beginning to think that the same woman, the nurse there who hates me may have gotten back from her vacation and decided to torment me again, despite JOE's needs...
I get 12 round trip rides anywhere in Hartford County per year through the Medicare Advantage plan I joined this August, and since I didn’t start using them till late October, I have enough rides this year to see Joe once a week and even get to some of my own medical appointments without having to drive. Come 2008, I do not know what I will do...But I’ll cross that bridge you know when, right? In any event, today I did have a ride, and even though I was forced to listen to Bill O’Reilly of Fox News fame spout off about the Democrats and their disgusting refusal to fight wars, I was glad of it.
Joe was sitting in his wheelchair when I got there, in a hospital johnny but in light sweatpants as well. He looked terribly distressed. Since a young woman standing next to him held the suction wand I assumed it had to do with the choking secretions in his throat once again. There must be some solution, I thought, this is no way to live. I asked if I would be in the way if I sat nearby and she said no, she was simply waiting for the respiratory therapist. Joe pulled the air towards him, waving me in.
But it was clear that Joe needed more from me than mere sitting. He was so troubled by uncontrollable drooling that he was unable to wipe away or prevent in the first place that I took up a towel and stood next to him, letting him chomp down on the fabric to soak up his saliva when he needed to. I would wipe it away if it escaped his mouth. (Oh dear, I apologize if I am grossing you out...I forget that you have not lived with this or things so much worse. And there have been plenty of those. If you cannot read this particular paragraph, skip it. I will confine these matters to one ‘graph only. So simply jump ahead to the next and don’t worry about what you may miss. It is mostly important only to Joe, and to me.) This was only the most obvious of the problems. Less so, but even more troubling and dangerous (“dangerous” since he calls it “choking” though I don’t understand how or why: he is on a vent that “breathes him” through his neck, so why are secretions in the back of his throat “choking” – or is it that they give the sensation of choking, when he would still be “breathing” normally? That is the only explanation I can come up with: his brain gets the message that the back of his throat is closed, therefore he “is choking” and “can’t breathe.” Naturally, panic ensues from this. But because his “body,” so to speak, is getting plenty of air through the tracheostomy, he goes right on living nonetheless...) More troubling to him are the sticky thickened secretions that collect in the back of his throat and need to be “vacuumed” or suctioned out, much as a dentist’s assistant suctions excess water and saliva during dental procedures. Secretions must be suctioned regularly from his windpipe, his trachea, too, or his airway could close and then he truly could not breathe.
Today, when I came in, he was having trouble with all three areas: oral, throat and trachea, and seemed quite discouraged. But when the respiratory therapist (henceforth RT) left the room briefly to answer a page and I asked him if it was still “worth it” he nodded his head emphatically: Yes, yes, it was, even with all the unexpected difficulty living with a vent presented, yes, it was worth living like this. I nodded; it was necessary to ask the question from time to time, but I understood his answer and would keep my word: he would be resuscitated under any and all circumstances. It occurs to me, however, that this may not be so desirable as he believes, and that there are degrees he may not have considered. For instance, does he want to be resuscitated if brain dead or damaged? If paralyzed by ALS and blind? If locked in? Probably I am not even beginning to think of the many other ramifications of an across-the-board order to resuscitate...Though, of course, in an otherwise healthy person, it is assumed, so why not in Joe’s case, since he wants to live as much as any healthy person does. Because he is NOT healthy? Because if he does not have a healthy brain, what does he have? And how does one reach him, if his brain does not function properly. I’m sort of surprised that no one thought that his having schizophrenia (let alone a touch of Asperger’s) disqualified him from having a vent, or at least from making that decision on his own. I’m very glad they did, but it sort of surprises me that no one tried to fight him, as there were many who were against his decision and could have made an issue of it. Thank god he has been stable for many years and that this is a free country...
It was gratifying for the first time to have Joe tell the nurse that though he was tired by the time I was leaving, he felt better than he had when I came. I know I didn’t do anything to bring this about. It was mostly that the suctioning worked for once, and so more oxygen got to his brain, which cleared up his thinking and relieved his mental and physical distress. But all the other visits had felt like disasters because he had been under the weather each time, and totally uncommunicative, too tired to “talk” and too troubled by— phlegm to discuss anything else. While he had been glad to see me, I think what he’d really wanted was the RT’s fulltime attention, and wanted that more than he wanted me at the moment. I don’t blame him now. Of course he had, who wouldn’t? I understood even at the time that he felt like crap. But when I’d left I also felt empty and useless, as if my visiting meant nothing to him, that Karen with her competence in the sickroom had finally managed to mean more to him than I did.
I know now that she does not, not in his heart. He knows her competence and her help come at a price. But we both agree it is a price in dollars well worth paying, at least for now. (*One other word about Karen. She really does know how to navigate “the system” and when I say that I mean just about any system. First of all, the “health care system” whether in its private aspect, like insurance, or public and private together as in hospitals, or purely public, like Medicare benefits. But really she is a whiz at cracking any system or organization: corporate, educational, financial - you name it and I bet she could find out how it works in no time, and then be able to, say, join a cocktail party of insiders and seem quite at home. She has an amazing ability with abstract concepts and organization. And she is very generous when it comes to sharing her time and ability: she uses it on others’ behalf as often as she is able to, enjoying it I think, also knowing that it is her forte, a skill so often lacking in others.)
So. I left Joe when he and I both of us began to tire. Outside, I called the agency just as my ride was then arriving at the hospital, exactly on time.
Home again. It is 3pm and the sun is low in the sky. I haven’t eaten all day but there is no time to stop. I have to call Lynn and Cy because they have been alone all day and god only knows if Lynn got her meds or anything at all to eat. Cy answers the phone and tells me to come on over. I figure something must be wrong or he wouldn’t invite me with such alacrity, but I call back at the downstairs door, asking if I can stop and get anything for them on the way. No, nothing. They have everything they need. And so I “race” over, precisely, even slavishly, staying at the speed limit as I always do because the cops watch me, monitoring my car for any lapses. Occasionally a car will follow me for a time and then I know it’s a cop; but when it turns or pulls into a driveway, it is clear that the cop has gotten bored with my perfect speed limit driving and won’t bother me again for a while, though there is always another who will. Today, there are three, but they do not persist for long, and I have the long uphill stretch of Highland Street to myself. I stay at 35mph anyway, come to a full stop at the stop signs, and reach Cy and Lynn’s exactly 14 minutes after I locked my apartment door. Perfect timing.
Except that there is another Toyota Corolla in the driveway. So they already have a visitor? Why then do they need me? I’m a teensy bit irritated...I don’t really mind coming over, but if I’d known someone was already here, I might have taken a bit of time to—Oh, what the hell, Lynn will have soda and tea and food here. She loves to feed me. What difference does it make where I eat, for heaven’s sake?
I let myself in and a short, white-haired woman greets me, introduces herself as Helen. I tell her who I am. She says she knows. I enter the living room and give Lynn a gentle hug. She is seated in her recliner, her broken arm in a brace, cannulas (sp?) of oxygen in her nose. Lynn tells Helen that I am the one who “wrote that book” and Helen responds that she understands that, she read it, and she thinks I’ve lost a lot of weight since “those pictures were taken.” I tell her that I was taken off the drug that had put on so much weight and I now take a drug that gives me no appetite at all. I recently started on the other drug too, but at a fraction of the dose. She mentions that she would love to lose weight too. But I do not know why as she seems perfectly well proportioned and quit trim. I cannot guess her age except that I know that she and Lynn have been friends for “many years” and her hair is snow white and...Well, now that I think about it at one point, talking about the many friends she has lost, she warns me, “Pam, don’t get old, it is not worth it,” so I would venture to say that she must be in her seventies. Younger than Lynn at 81 but old enough to call herself “old.” (My response to her comment was an acerbic, “I’d prefer getting old to the alternative...” but maybe I missed the point?)
Eventually, Cy goes to get Lynn’s prescriptions, Helen and I start chopping ingredients for an omelet for Lynn’s dinner, then Helen leaves for home and I finish cooking enough for both Lynn and Cy. I am at first rather shy about preparing food for such a good cook as Lynn is, fearing that I’ll make something completely inedible. Then I realize that both of them are so utterly unpretentious that an “omelet” doesn’t mean the fluffy folded exquisite dish that cooks on television whip up with such aplomb, but merely sauteed peppers and onions, with beaten eggs poured over them, slow-cooked till done. As a treat, I melt muenster cheese on top, the slices arranged by chance in a star and Cy’s comment is: “have to be artistic, do you?” But the real compliment, after I bring a plate to Lynn in her recliner, is when he, who has said he isn’t eating, that I should have his portion and eat with Lynn because he had a late lunch – when he asks, “Where’s mine?” I don’t hesitate. “It’s coming,” I say, grinning to myself. “I’m giving you the rest, right on the plate I served it from.” And after bringing him the remaining three quarters of the omelet (Lynn barely touches food, just likes to have some on her plate), I bid them both good night and slip out the door, feeling like a million dollars.
The drive home is difficult though. At first I forget to put the lights on, because the car has daytime running lights and those fool me into thinking the full headlights are on. It’s then I remember why I usually try to get home before four in the winter: I can’t see well in the dark. It’s hard to drive even at the speed limit now and properly see the road, especially when there is on-coming traffic. I avoid any busy street on the way home, unless it is wide and well lit. Luckily, the police do not bother with me in the dark. Maybe they can’t see me, or maybe they know I drive well below the speed limit then perforce. Just before I reach the main drag, I realize I don’t have any food in the fridge. I have to stop at Stop and Shop first. Oh no! But I do it, folks, yes I do. I race through the friggin’ store, paranoia or no, talking up a storm but aiming to get it over and done with for a week in less than fifteen minutes (all except for produce which I’ll buy at PriceRite). If I take any longer than that it is because the cashier is slow. But actually she is not, I am: I cannot find my Stop and Shop card, and then my debit card. Still, and I cannot believe this, there is no one in line before me. There is no wait. I get through in no time and am home ten minutes later at exactly 5:56pm. My day, at least the part of it I must spend with and for others, is done. The rest is mine, and I can do with it as I please.¬¬¬¬
Posted by pamwagg at November 10, 2007 12:38 AM
FYI I didn’t do very much, alas: I did eat. I made a “pizza” with spaghetti sauce and shredded mozzarella cheese on naan bread with little bits of green pepper on top and cooked it in the toaster oven. It came out pretty good, good enough that I ate the whole thing over the course of the evening: 500 calories worth, I estimate, so that helps the grand total. What else? Not much. I talked with Karen, which took up too much time, unfortunately, and it was necessary as it concerned Joe; and I was talked at by Josephine, of whom I am quite fond, thought I get irritated by this habit of hers. I tell her so, but she never gets the message, spoken loud and clear though it is...Otherwise, writing this was my major accomplishment, and I have a feeling it was, in the end, not worth my writing, much less the time.