Friday, December 9, 2005

 

Just a quick note to note...

...that I'm very excited! I was up until 0340 this morning installing and adjusting all the software necessary to network our computers and hook them all to our cable internet connection. Today is Setting Up The Network day.
    Although Mom retired at a normal time for her, 2330, in fact, because she knew I'd be up to all hours fooling with our computers, she arose a couple of times in the night and came out to join me, asking me what I was doing, wanting to see what a computer looked like that was installing a new system on itself, discussing all the cords laying about and the connections I was making from here to there to everywhere. I was surprised at her interest. So was she. Thus, she's still sleeping but I'm going to rouse her in just a few minutes, here, at 1400.
    I'm a bit concerned that she hasn't moved her bowels since her diarrhea. I mentioned last night, as we prepared her for bed, that maybe I needed to administer a light laxative. She said, "Wait until tomorrow. I don't think it'll be necessary by evening." I hope she's right. Neither she nor I like to play the laxative game.
    Time to awaken The Mom.
    I've still got a fair amount to do regarding networking so it may be another 24 hours or so before I post again.
    Later.

Thursday, December 8, 2005

 

The Thanksgiving Drive: Not My Finest Hour

    By now you know that our Thanksgiving visit was spectacular. Very satisfying for both of us. You know why. What I haven't revealed is the horrible parts of the day, the trips down and back.

Prologue:
    When my mother is on tanked pulse oxygen regulated by her breath she sometimes indulges in mouth breathing for no other reason than that the cannula continues to feel to her like a nose invasion. Her mouth breathing usually occurs when she is uncomfortable, tense (for either good or bad reasons), she has a cold or is particularly weak. When sleeping she uses the concentrator so that if she should begin to mouth breath it won't make much of a difference in the amount of oxygen she receives. Sometimes, if her discomfort or weakness is extreme, I'll move the concentrator around the house and use it on her during the day if she's in need of oxygen. When she uses the pulse regulator I've become so used to listening to the timing of the puffs and reminding her, sometimes as much as a couple of times a minute, to "breathe through your nose, not your mouth" that this chore is autonomic. Thus, she's also gotten so used to me reminding her of this that she relies on my reminders. Somewhere in her mind she knows that if she is paying no attention to her breathing I am and everything will be all right. Lately, within the last couple of months, though, I've experienced blips in which I become irritated with constantly reminding her to breathe through her nose. Thus, I've found it in our best interests, in order to keep the level of irritation to an absolute minimum or stop it altogether, to sometimes use the larger "C" tanks during the day if she's on oxygen and dial the regulator to 2/lpm continuous. I still occasionally have to remind her to clean out her nose and keep her mouth closed when breathing to make sure she gets a full 2/lpm most of the time, but not nearly as often as with the pulse dial settings. When we travel to the Valley and back oxygen is necessary, as her body doesn't adjust well to the changes in altitude anymore and even traveling down to an area where she usually doesn't need oxygen creates a certain amount of stressful breathing until her body adjusts, usually by the time we "land".
    Unfortunately, because I was caught up in trip preparations on Thanksgiving morning (poor excuse, but there you have it), I didn't take any of the above into consideration. When we left the house at 0900 I hooked her up to an M-6 with the pulse regulator at 5/lpm, assuming that this would allow her, between her bouts of mouth breathing, to get at least 2/lpm per minute regulated. We'd gone through all our C tanks previous to the trip and a delivery wasn't scheduled until Friday. The M-6's will deliver oxygen for an hour at most on 2/lpm continuous flow. Even on as high as 5/lpm pulse we get a good three hours out of an M-6 tank, which covers the trip in question. Besides this, since I knew she would probably be doing some mouth breathing, I figured that we'd be fine with just the M-6s going down and up and I knew, since she was in good health, that she wouldn't need oxygen once her body settled itself in the Valley.
The Trips:
    The short version is that at some point after we'd been on the road for a little less than an hour, without notice I fell over the edge.
    The long version: My habit of reminding her to breathe through her nose suddenly morphed from benign and automatic to treacherous and resented. My voice became tighter and harsher. I began to pick on other inconsequential habits she has when we're driving: Balling up the tissues she uses and throwing them on the floor; telling me she isn't thirsty when I remind her to sip from her water bottle and refusing until I order her to drink; repeating over and over that she's "never been on this road before". Within 15 minutes my frustration level was so out of control that I blurted, menacingly, my voice low and loud, "Close your fucking mouth and breath through your fucking nose."
    I hate it when I allow myself to be driven to the point of cursing at her, especially when I use the word "fuck" and its derivatives. However, in answer to Dr. Phil's perpetual question, "And how is that working for you?" the truth is, it worked on the Thanksgiving trip exactly the same way it works when we're at home: Just fine, thank you. Through the rest of the trip I did not have to remind her to breathe through her nose. Problem solved, right?
    Not quite. I was emotionally devastated that I'd allowed myself to devolve to this state and I began to weep silently and uncontrollably. My mother was aware only of the fact that I was stone silent through the rest of the trip. She didn't realize I was uncontrollably weeping, tears streaming down my face and staining the front of my shirt, until we arrived at MCF's house and I pulled off my solar shades, my usual habit before we exit the car.
    I could see her taking note of my state but she said nothing.
    By the time we'd arrived at MCF's house I'd realized that I seemed unable to stop weeping. I decided just before we pulled into MCF's driveway that MCF's sister and her guests would not appreciate a guest who was weeping uncontrollably. When MCF met me behind our car to help me unload the pies I'd baked I sobbed to her that I was completely undone by our trip down, couldn't seem to control myself and that perhaps the best action was for us to deliver the pies to her and head back to Prescott.
    Luckily, she would hear none of this. She and her daughter settled us in their home, took me aside and by the time we all were due to leave for her sister's had managed to help me work myself into a tearless holiday state of mind. They were both completely understanding about the stress I was feeling. Neither of them belittled me or told me to buck up.
    So, we went to her sisters. As you know, both my mother and I had a wonderful time, so good that we promised to come back for Christmas. I gave no thought to the impending trip back up the mountain. There was much help getting Mom in the car, for which I was incredibly appreciative and which put me in an even better mood. I hooked her up to oxygen and off we went.
    Before we were out of the city the trip up had morphed into an extended replay of the trip down with additions: This time my mother couldn't keep her hands off the cannula cording. I found myself not only constantly reminding her to breathe through her nose but to keep her hands off the tubing, as well. My irritation worked itself into distress (without tears this time...I was determined not to inhibit my night vision with weeping) before we were out of the city. Finally I said to her, "Okay, look. I can't continue to do this all the way up, reminding you to breathe through your nose and leave the cannula cord alone. It's endangering my ability to drive safely. If you don't get enough oxygen or you end up disconnecting yourself, oh well."
    She did disconnect herself from the tank during the steep seven mile climb from Black Canyon City to Sunset Point. I could tell because she began to pant heavily. I realized, in part because we were climbing into thinner air and in part because the few cigarettes she'd had throughout the day had somewhat compromised her breathing, that we were going to have to stop at Sunset Point and reconnect her and that it would be best if I suck it up and continue my reminders to her once she was reconnected.
    Sunset Point is not someplace you want to stop on Thanksgiving night. The parking lot was already full of semis and cars nestled in for the night. I drove past all the cars and pulled along the sidewalk on the south side of the rest area, turning on the hazard lights so people would avoid hitting us while I reattached Mom's oxygen and gave her a stern lecture (which, in hindsight, didn't help) about how I needed her cooperation.
    Within a minute after pulling along the sidewalk a DPS patrol car pulled up behind us. "You can't park here, M'am. This rest area is full. You'll have to move on."
    I explained the situation to the officer, telling him that I was almost ready to head back onto the highway. He understood, protected us from the traffic of others driving through the area looking for a place to stop and we were shortly on our way.
    I was fairly successful in controlling my irritation and remaining even-keeled throughout the last hour of the trip but I was miserable. Mom, however, was fine, even though she continued needing reminders to breathe through her nose and leave the cannula cord alone.
    Although I can't say that the trip dimmed the felicitous Thanksgiving get together experience, I realized I had to give serious consideration to how I could avoid some of the tension that we'd both experienced during the actual trip and whether I wanted to do this again on Christmas.
    MCF had offered her home to us, suggesting that we sleep there Christmas eve so that I could have a chance to unwind. I considered ways that I could keep myself from having to remind Mom how to breathe oxygen: The obvious and most promising tactic would be to make sure I brought C instead of M-6 tanks and dial her to 2/lpm continuous while driving there and back. I wasn't sure about the cannula situation but figured I could talk myself into not becoming irritated and simply pulling into the closest exit, reattaching her and continuing, if necessary.
    I also thought about all the work and supplies it would take to spend a night in the Valley with friends: Bringing both regular sheets and plastic sheets; making sure all our bathing supplies were packed for the next morning; making sure our hosts didn't mind if we cleaned out a tank of hot water during her morning bath, a bath which would be necessary; bringing at least three extra sets of clothes, just in case; packing along all the other "just in case" supplies on the out chance that they might be used; performing all the chores I normally do for my mother at home in an unfamiliar environment; packing a futon and my bedding so that I could sleep close to my mother in case she needed to get up during the night in unfamiliar territory; the likelihood that I would get very little sleep and be tired and touchy the next day; negotiating two visits, both of which would be necessary if we were there: One to MPS and her family, since we didn't see them over Thanksgiving (which was a horror of miscommunication all around) and one to MCF's sister's house; all of this followed by the final trip up, when both of us would no doubt be tired and touchy.
    I factored in a few other aspects as well: 5 (at least) tense, possibly horrible hours in the car versus 8 hours visiting on Thanksgiving versus probably about 16 hours visiting over a Christmas trip; the fact that this would be the third trip in less than three months (the first being her doctor's appointment November 1st); the drain on me of taking these trips; the drain on Mom, despite her enjoyment of the visits; my usual heightened tension during the holidays, anyway, not being a holiday person but, at least this year, trying to honor Mom's holiday desires and habits.
    I realized I had a choice: I could try hard and possibly successfully to negotiate yet another holiday trip using all I'd learned from the disastrous part of the Thanksgiving trip to ameliorate any tension problems that might occur, thus honoring Mom and her holiday desires, or I could call it a day, do my best up here in a familiar and relaxed atmosphere to honor the holiday for Mom and hope that, if people want to see us, they work a low-key visit to us into their schedules.
    I've chosen the latter. Most of the time in this caregiving journey I can negotiate tensions without too much of a problem. I'm fully aware of my contribution to any tension I experience and I know how to stop, breathe and evaluate any problems I'm having in order to change course. I also know that when I'm experiencing a particularly tiring and busy period my tendency is to allow my difficulties full sway for at least awhile so that I can observe the onslaught of my strictly emotional reactions without any attempt to reign them in for any reason. The more tired I become, the more likely I am to want to allow myself this sway. I suppose I could use this holiday as an opportunity to figure out how to handle future holidays with much more glee and elan but, you know, I'm already tired, this year, I don't feel like being the cooperative caregiver. I'm already doing a lot of activities I've avoided over the last few heavy-duty-health-negotiation years: Holiday baking and the passing out of home made treats to acquaintances and friends up here; holiday shopping and mailing; focusing on hauling our 75 pound tree and decorations out of the shed and putting it up (which hasn't yet happened but I'm planning on doing soon); making sure I don't hibernate to the point of alienating family and friends...this is about all of which I'm capable this year.
    What it comes down to is this: One can only give care out of who one is. If one is left alone to give primary, secondary and tertiary care without the help of family and community one finally realizes that one can't always take up the slack and remain sane and relaxed. One finally has to chose: Honor family and friends or honor circumstances that ensure one will be remain as sane and relaxed as possible. Once again, this year, I choose the latter.
    Maybe next year.

 

We had an amazing day, yesterday.

    All holiday shopping and mailing was finished. Although she had no desire to get out, citing the cold, she was up a lot, felt good and we had a great day. I went over the lists of stuff we were sending to my sisters, which included a copy of the video Antonia's Line. She couldn't remember that she'd seen it so we watched it again, always a pleasure for me. Afterwards we talked about how this close-knit yet amazingly open community of related family and friend family was much like Mom envisions her own family; she being the Antonia-matriarch, of course. Interestingly, there were no regrets voiced about the differences between her actual situation and her imagined situation.
    We both retired at the same time: 2315. I was really tired so I have no idea when her light went off but I suspect it was shortly after I settled into bed, as she was tired, too.
    I will be posting about Thanksgiving: The Down Side shortly. My plan, after that, for today is to update the system on this computer then, set up a wired home networking system that'll allow me complete access, regardless of what computer I'm on, to those aspects of recording Mom's and my journey that I necessarily have to do on Windows software (keeping track of her blood glucose for the doctor). Some parts of the procedure will involve blocks of time during which it would be best if I can concentrate completely on computer stuff and not have to deal with the daily observation of Mom. I should be able to accomplish some of the stuff this morning (like clearing this computer of miscellaneous stuff I don't use and setting it up to easily receive the updated system). Other parts may have to wait a day or two.
    Well, better get on with it.
    Later.

Monday, December 5, 2005

 

Laid-back day...

...as you can read in today's Non-stat Day post over at the Test & Meds site. We just sat back and enjoyed each other's company and a moratorium on me chasing her around with the statting meters. Her suggestion.
    Although it's cold, I'm going to try to get her out and moving a little this week on principle, although I'm not sure it will work. I'm not going to push it. I'm past that, now, at least for the time being.
    One of my plans is to hit the storage shed and pull out the Christmas tree and decorations. Time to get those up, clean carpet or not. Our neighbors have trimmed their house with their usual lights and Mom has noticed and admired them through her bedroom window every night before retiring. The background memory of the display keeps her bugging me about "our tree" during the day. It's time.
    No phasing today other than normal short term memory loss. That was a surprise because she was in almost continual memory phase almost all day, yesterday.
    Not much else to report, except all the stuff I've mentioned in previous posts but haven't gotten to, yet. Maybe tomorrow?
    Later.

All material copyright at time of posting by Gail Rae Hudson

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