DNF
So Tam was coming out of isolation this weekend and couldn't wait to get home. On wednesday night she already had the news that she'd be out on friday, and was begging to come home for a two night stay over the weekend. As much as I love her and was glad that she was getting out of there, she's just so much work and stress that two nights were out of the question. I told her this and she wasn't very happy with me, which I suppose was the obvious outcome but I didn't want to lie to her and give her false hopes of a two night stay either. Still, she was looking forward to coming home right away after work on friday, and then I had to dash that hope too. I'd already had plans for both friday night and saturday morning, and I also wanted to be well rested before having her home besides, so I stood my ground and saturday evening it was.
Following through on the whole 'well rested' plan, I even had an afternoon nap that day and didn't get to the home to pick her up until shortly after eight. To my surprise she was still catheterized... I had assumed that she'd be off cath once isolation was over, but that was a bad assumption. She still had a rash that they were trying to treat. I was tempted to just turn things into a visit at that point and not have her home, but I felt so bad for her weeks of being confined to that bed that I resolved to take her home anyways. When will I learn to just go with my gut and not my mind?
Getting her home was an awkward proposition what with the catheter and collection bag trailing along, but we managed to get there okay with the typical pharmacy along for the ride. (Curiously, the small orange packet is cholesteral -- isn't that stuff supposed to be bad for you?) I got her night meds into her and had her all tucked in by about 10:30, then immediately went to bed myself. (Also curious, the only time I don't have insomnia is when someone else is at home with me.)
About a half hour later I was up to get her changed. No problem, for I had anticipated this and was well rested.™ An hour later I was up again; same thing. The third time I was up it was for something a little weirder. We have a queen bed in the corner of the room, and usually I tuck her in right beside the wall so that she has plenty of room to thrash about without much danger of falling out of bed. This weekend I couldn't do that though because of the catheter. I was not going to tuck her in with a bag of pee, which I left hanging over the edge of the bed like they do at the nursing home. That left her on a short leash and I had to tuck her in in the middle of the bed, and somehow she had managed to toss and turn her way around nintey degrees! Her head was hanging off the edge of the bed smacked up against the wheelchair, and her feet were up against the wall. I got her spun around and tucked back in, then went back to bed. Fifteen minutes later she had me up again to correct the same thing! I got another few snatches of sleep, and then she had to be changed. Again.
At this point I was still managing to get some sleep in between interruptions, but around 4:30 a.m. all that changed and she started getting me up every five minutes. She was too hot, too cold, the blanket wasn't covering her feet, arm, leg; she was turned around again, etc., etc. At 6:00 a.m. she was hungry and wanted to start the feeding tube. Well that wasn't too unreasonable, after all, it does have to run for ten hours. I got the tube started and figured that then I'd be able to get more sleep; she was probably just restless because she was hungry. Wrong. Now she was obsessed with the pump... after several "I can't hear it running" interruptions, I did what I thought was smart and turned it towards the bed so that she could actually see the damned little wheels spinning round. Bad idea. They don't spin continously but start and stop every few seconds based on the feed rate, so all that did was change things into endless complaints of "It's not running."
Now because of the feeding tube and her tossing and turning, I haven't slept in the same bed with her for quite a long time and have somehow learned to sleep comfortably on the couch. This means that each interruption actually has me getting up off the couch and walking around the corner into the bedroom to see what she wants. This is not something I can keep up every five minutes for hours on end after only a few hours of broken sleep. At 9:00 a.m. she needed to be changed again, and even though that in itself is totally reasonable, I was close to snapping.
I've lost my cool with Tam on three occasions and it's not something I'm proud of. Every time the triggers were the same... endless unreasonable requests in the middle of the night when I'm trying to get some sleep. (Water drop torture, it works.) This time I recognized my limits and all of the warning signs, and at 9:00 a.m. I knew I'd had it. I got Tam dressed (as much as you can dress a person against their will), manhandled her into the wheelchair, out to the car, into the car, and back to the nursing home. She didn't speak to me the whole way there and was completely uncooperative with both me and the nurses when we got there, and probably for the rest of the day.
I hate this ending. It's a sucky, shitty, lousy and incomplete ending. But I know it was the right one.
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Napolean Dynamite -- What the hell was that?
There's two hours of my life that I'll never get back.
Update: Okay. I hated this movie, but when I was behind a VW with the license plate V0T4PDR0 last weekend I thought it was really cool. That's just whacked.
All Hail Prime Minister Wahoo!
I've been so busy not paying attention to things that it wasn't until I got an e-mail from
Egale Canada that I realized that Harper won. (Though I at least got my vote in yesterday.) I'm very opinionated on this, although today at a farewell lunch the conversation was all about politics and all I could do was sit back and listen, as the realization dawned that I don't know shit about this last election.
I don't follow the news, or watch enough tv (other than Teletoon and Discovery) to have seen most of the campaign ads, or have caught any of the debates. So what follows are the impressions of a know-nothing, which probably makes me reflective of a large chunk of the voting public, unlike my well informed professional friends at lunch today...
Stephen Harper fucking scares me. I disagree with supporting the americans in Iraq, or letting them park missiles on our lawn, or repealing gay marriage. For a whole year leading up to the non-confidence vote he and the conservatives had nothing constructive to do but whine and bitch about the sponsorship scandal, while the liberals and the NDP went on about the business of trying to cooperate in running the country, JUST AS THEY HAD BEEN ELECTED TO DO. The only time the conservatives got a platform was when the election was game on, and how much can you trust the shit they come up with in a hurry that they think will please the most voters because it only counts on election day? Yeah, about that much. The NDP's goals, the liberals goals, and for that matter even the Bloc's; have been evident long before the election was called, so you can at least trust their convictions.
Now to the liberals... where was their platform? Perhaps it was apparent to informed voters, but to a schmuck like me it was completely invisible during the campaign. All I saw or heard about were attacks on Harper, and that doesn't win an election when 'they' have a scandal to point to and 'you' don't. I remember Paul Martin's televised address last April, it moved me enough to write my liberal MP:
I am writing to profess my support and appreciation of the television address made by The Right Honourable Paul Martin, Prime Minister of Canada, on the evening of April 21, 2005. It demonstrated the quality and accountability of both his leadership and that of the liberal party, and your collective commitment to using the time spent in office for the governance of Canada. Well done!
He even wrote back to say thanks. I also sent this off to my conservative party riding president:
I am writing to express my displeasure at the current goings-on in Canadian parliament. I feel that too much time and attention is being focused on the sponsorship scandal, and the resultant call for an early election.
What seems like a large amount of money to the majority of us Canadians is no doubt trivial compared to the budget of a country. Perhaps I’m naïve, but I actually believe that neither Paul Martin as Finance Minister, nor Jean Chrétien as Prime Minister, were aware of it until it was brought to light in later audits.
Scandals will happen in any government, at any level, and it is how that government responds that is the true measure of its merit. Although I missed Prime Minister Paul Martin’s April 21st television address, it was with great respect that I read the transcript in the newspaper the next morning. It underscored the leadership he has shown in the face of this issue in the past, and demonstrates strong leadership today by calling for parliament to return to the pursuit of the public’s business.
I am not by default a liberal supporter – I have voted many ways in many elections. I can say though that based on the current goings-on in parliament, my vote will not be for the Conservative party should an early federal election be called.
Of course I never heard back from him.
What I'd like to know is, where was that Paul Martin during the campaign? Despite his disappearance I still voted liberal, but my logic was overridingly fiscal at that point: Occasional 200 million dollar scandal vs. yearly multi-billion dollar deficit.
Gee, let me think about that.
Anyway... my liberals lost and they deserved it with that campaign, or rather lack of a campaign; but damn!
C'est Difficile
So basically, what prompted the
previous post is that the problems we'd experienced when Tammy was home over new years kept getting worse. She developed a nasty rash and monday night that week they catheterized her to try and help her heal. That pretty much confined her to bed and kept her miserable, and it was quite depressing for both of us. I was looking forward to taking Tammy to the company holiday party that weekend (in january, oh boy... how politically correct) and it began to look like I wouldn't be able to. (The previous year when I could have, I deliberately didn't... what the hell was I thinking?)
On Thursday that week she was even worse than before the catheter and they sent cultures to the lab to find out what was wrong. Tammy was so weak and fragile that night... for the most part I've felt like I've been able to accept her inevitable demise, but that night it just really hit me and put me into quite a funk. I held out the hope that the tests would come back alright, but found out on saturday that she was positive for a bacterial infection called
C. Difficile.
I lost all drive and at 6:15 that evening after the holiday party cocktails had started, I was still sitting on the couch watching tv and text messaging a friend. She basically told me to get off my ass and go anyways, I did and managed to get there only a little bit late for dinner. I ended up enjoying the party and staying to the very end (which came early on account of the dj sucking), then afterwards drove some friends home and hung out at their place until the wee hours of the morning. Thanks Tree!
In the past two weeks I've been visiting Tam a lot more than I had been lately, though I didn't make it in this weekend due to lack of motivation on saturday, and then wound up clubbing saturday night and all through sunday for a friend's birthday. Woops. I was there last night again though and Tam, while doing much better, is still in isolation and feeling the effects. I read her a chapter from a
James Herriot book we've been working on and for the first time she actually fell asleep while I was reading to her, she's still that exhausted. Sigh... I can't wait for her to be better so I can have her at home again for awhile. Who'd have thought I'd be saying that?
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Somebody
I want somebody to share
Share the rest of my life
Share my innermost thoughts
Know my intimate details
Someone who’ll stand by my side
And give me support
And in return
She’ll get my support
She will listen to me
When I want to speak
About the world we live in
And life in general
Though my views may be wrong
They may even be perverted
She’ll hear me out
And won’t easily be converted
To my way of thinking
In fact she’ll often disagree
But at the end of it all
She will understand me
I want somebody who cares
For me passionately
With every thought and with every breath
Someone who’ll help me see things
In a different light
All the things I detest
I will almost like
I don’t want to be tied
To anyone’s strings
I’m carefully trying to steer clear of
Those things
But when I’m asleep
I want somebody
Who will put their arms around me
And kiss me tenderly
Though things like this
Make me sick
In a case like this
I’ll get away with it
- M.L. Gore
Goodnight sweet girl, sleep tight.
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No more sketchy people
So on Sunday I headed into Comfort Zone for my friend Adam's birthday. The original plan was to get there at six a.m. because he had to work at two, but since I only got home around five thirty that was pretty much out of the question. I got to the zone in the early afternoon to discover that he'd gotten out of his shift and hadn't been there for too long yet himself, so then I didn't feel so bad. Of course Ash and Amy called in the morning to see 'if I was going to zone today and could you give Jess and us a lift home'... whatever; I was there and would be heading home at some point so what the hell.
I was at zone for about two hours and had run into Jess but saw no signs of Ash or Amy, when Adam and Tammy said that they wanted to go to their place for a while. It being Adam's birthday and my trips to TO being more about the friends than the places, I tagged along and gave them a lift. We picked up Subway for dinner (thank god, I hadn't had much to eat all day) then went back to their place to eat. We weren't there for more than five or ten minutes when Ash and Amy called with this big emergency. Amy was having a bad trip and
had to go home right away so could I come get them? Fuck that... I told them I was going to at least finish dinner first then figure out what I'd do. They called back in a couple of minutes and I side-buttoned them, and then they just kept calling and calling and calling. I ignored them until we were done dinner and were ready to start heading back to zone.
On the way there I finally called them back, only now the story was that they were on the other side of town freezing and broke, could I come pick them up? Argh. I should have said no but Jess was with them and she's really sweet so I decided what the fuck, I'd go grab them. Tammy came along too to reinforce the fact that we were going back to the zone and not home. When I picked them up, sure enough, Amy was tripping huge; and her and Ash just kept whining, bitching and yelling that they had to go back to Kitchener, while Jess shrank back into her seat and wished she didn't know them. I tried to pawn them off on everybody in TO we knew but couldn't get a hold of anyone who wasn't at Comfort Zone or otherwise unavailable. Tammy, Jess and I just wanted to go back to zone but Ash and Amy were being such shits that I finally dropped Tammy off with the promise to come back next week for her birthday.
On the way home Ash and Amy were like 'big deal, it's only partying, we'll make it up to you'... Fuck them. They have no idea just how much I needed to check my brain at the door this weekend.
That's it, I'm done, from now on no more sketchy people!
(Except me... When I'm partying... Bwahaha!)
Thank god for good friends
The best of them always know how to put you back on top of the world.
Mine's defective, can I have another one?
So Tam's slipping off her nut again.
This warrants some history: In January of 2001 Tammy become obsessive compulsive as a result of her battles with HD, and started making me wash my hands
a lot. Since HD also made it hard for her to coordinate her movements, she a) couldn't wash her own hands, and b) spent all day lying in bed watching television, not getting dirty in her mind. Dirt was her obsession, but making
me deal with it was her compulsion. Then something happened that made her distrust the kitchen, despite any amount of anti-bacterial cleansing, and thus began the days of the fast food meals.
As illogical as it sounds (but hey, we're not mentally ill) she would no longer eat anything prepared in the kitchen, and I had to truck in fast food three times a day. Not only that, but I had to take elaborate measures between getting it in the door and feeding it to her. To touch anything or to set the food down anywhere was instant game over -- it went into the garbage and I had to wash my hands, head back out, and start all over again. I doubt if I was putting in 30 hours a week at my 40-hour-a-week job, fortunately my employers (despite all their other faults) looked the other way and I still got full salary. Attempts to tell Tammy she had a problem were unsuccessful, in her mind I was the one with the problem for thinking that any of this was unreasonable behaviour. Those were not good days.
Finally something happened that made her distrust the car, then that was it -- she stopped eating. I called the Huntingtons Society for help and the social worker made it very clear. She had to be committed, against her will if necessary. After work that day I called on her mom (an ER nurse) and she came over to help me confront her. Tammy still wouldn't admit there was a problem, so we had to call 911. Both the police and an ambulance came; they talked to Tam privately and told us that she seemed okay to them. At that point I could have had a breakdown and they'd have had to haul me away, but Tam's mom gave the cop a good talking to and he grudgingly agreed that the doctors could decide. Tam was restrained and wheeled out on a gurney.
Her mom and I followed the ambulance to the hospital, where Tammy was placed, cursing and swearing, into that scary white room with the big dome window in the door. We waited for hours for someone from the psych wing to do a consult, while in the meantime Tammy wouldn't let us see her, telling the staff she hated us and never wanted to see us again. She was admitted following the consult, and in the wee hours of the morning we went home. I had a silent weekend from which I recall nothing except the call from the psychiatrist, who spent at least an hour with me discussing Tammy's history to determine the right course of medication. Then on Tuesday something magical happened, Tammy wanted to see me.
Over the next week she was sweet as pie, happy to eat, and looking forward to coming home. She began learning to use a walker with the physiotherapist, and the hospital wouldn't discharge her until we were set up with home care. Thus began the renaissance, and for the next two years life was good, until we had the neurologist fiddle with her meds to overcome, ahem, sexual side effects (how the hell do priests not do it year after year after year?). Tam's obsessive compulsive returned as a result, only this time the fear was of broken glass in the living room from a light bulb that had shattered years earlier.
She became increasingly convinced that her hands hurt from slivers of glass, and demanded an emergency room visit. We discussed her previous experience with ocd, and while the glass was still very real to her, she said that she'd stay at the hospital for her meds to be adjusted if the doctors found that there was no glass. Of course there wasn't and Tammy was seen by another psychiatrist. We pushed for admission but he said that there'd be enough hospitals in her future, issued new prescriptions, and sent us home. In the next week Tam was worse and insisted on going back to the ER to get the glass out of her hands. Again we waited hours for doctors to tell us that there was no glass, then hours more for the psychiatrist to send us home with new prescriptions. Tam got worse.
I called the social worker at the Huntingtons Society again, whom I now had a relationship with through the support group, and she said that the secret to getting admitted was to refuse to leave. The next morning I got up at 6:00 am, had breakfast with my parents, then took dad to the hospital for a cancer operation. I worked a full day, then cooked a farewell dinner for Tammy and her mother before heading to the hospital for "operation don't leave". With Tam and her mom in the waiting room I headed up to recovery to see mom and dad, only nobody was there and the desk nurse told me she had no record of my dad. Another nurse overheard the exchange, asked me my name, then took me down to the waiting room in surgery. Mom was there crying and praying; dad was in emergency surgery for complications and they couldn't tell us if he would pull through. I spent the next several hours bouncing back and forth between waiting rooms. At 3:00 a.m. dad was out of danger and moved up to recovery, at 5:00 a.m. Tam was admitted to the psych wing, and at 6:00 a.m. I went to bed; after what was still the worst 24 hours of my life.
The psych wing was horrible. The first time Tam was hospitalized for ocd she was in a regular ward where she could receive proper care. Two years later with her condition much worse, she was in a wing with normal beds and mostly non-medical staff. They weren't prepared for somebody who couldn't wash, dress or feed themselves; and who could barely even press the call bell. Her moms and I began making daily visits, coordinating to try and cover every lunch and dinner so Tam could at least stay fed.
After two or three weeks Tam was mercifully transferred to Freeport for a full neuropsych assesment, staying in a complex care wing with the advanced elderly whose needs were similar. Volunteers helped her attend numerous activities and workshops which Tammy loved, occasionally blurting out such sweetly morbid things as "This is where I'd like to be when I die." After a month or so the assessment was called off, since Tam was mentally stable and had no symptoms that weren't directly related to Huntingtons Disease. She was discharged into long term care, meaning she got to stay at Freeport while on the waiting lists for a nursing home bed. Little had I known that that farewell dinner was literally her last as a resident of our home.
In February of 2004 she was admitted to Lanark Heights long term care and our problems began anew. The new doctor thought that she was on the anti-psychotic meds for HD related movement disorder, and figured that since they didn't appear to be working, she didn't need to be on them. On her second weekend home I realized that some of her meds were missing and brought up the issue with the nurse. She told me she'd pass on the message to the doctor but the prescriptions didn't change and Tam's behaviour began getting worse. Her obsession now was with the quality of her care, on each visit I was subjected to endless litanies on how her roomate hated her, such and such a nurse was a bitch, the nursing home sucked, she wanted to come back home, etc. It got to a point where the home called to say that Tam was a real problem and couldn't stay there anymore, and I let them have it with both barrels. Finally the doctor called me and it was the first that he'd heard about the meds being a problem, apparently the nursing staff had been stonewalling me from him. It took a few weeks to get the meds phased back in, but her last two years at the home have been good and for the most part she's been happy there.
Then a month or so ago I noticed that her meds had been changed again, and sure enough
her behaviours are increasing. The social worker at the home looked into it for me; the psychiatrist was called when they noticed that her behaviours had increased a bit (her decline due to Huntingtons is continuous) and adjusted her meds, but now her behaviours have increased a lot. The psychiatrist is only in once a month, so now we have to wait until the 19th before anything can be done about it. This will not be fun.
In the midst of all this, my phone has died again. I've been a Palm user for the last eight years and am not prepared to be without one. When my
original unit died, I started using
one we'd bought at work for a research project that was cancelled. I couldn't take it with me when I switched jobs two years ago, and my cellphone then would only hold a charge for a half day or so, so I sprung the big bucks to converge with a
Kyocera 7135. It was nice to have a phone, pda, and mp3 player in my pocket but only have to carry around one thing. Unfortunately it died 13 months later, only six weeks out of warranty, but was an old enough design that they no longer offered repairs. I'd have to pay the full replacement cost, $300 more than the price of a
Treo 600 after rebates. Of course I bought the Treo, adding a camera phone and video player to my all-in-one arsenal. I thought that I'd hate the chiclet keyboard after years of scribbling in my data with a pen, but it made for great one-handed operation.
Unfortunately my bad luck with smartphones quickly struck again, after little more than a month the screen got smashed. Since it wasn't a manufacturing defect and happened after 30 days, I was once again looking at the purchase price to get it repaired. Fortunately I do electronics for a living and found a new screen on the net, so I replaced it myself for about a hundred bucks. For the next ten months life was good, I even became an SMS demon thanks to that little chiclet keyboard. Then last week it started locking up at random, completely unresponsive until whacked, squished, or twisted. The warranty period's a year but my screen repair voided it, so I was planning to fix it myself again until King Kong happened -- the phone started vibrating in the theatre and I couldn't shut the damned thing off! So yesterday I went out and bought myself a brand new
Treo 650, adding a camcorder, bluetooth wireless, and a hi-res screen to my arsenal.
Every time I've bought a smartphone there's always been something better on the market. The Treo 600 was out but pricier when I bought the Kyocera, and the 650 when I bought the 600. The 700w just came out and I'm behind the curve yet again, but for some reason the guys at Palm decided to run Windows on it instead of Palm OS. This virtually guaranteed that it would suck, and I'm happy to report that in fact,
it does.
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Note to self
No matter how late you are to a Peter Jackson film, always go pee first!
Disconnected
So yesterday I had a whole day off and full of promise. I slept in until noon, had some breakfast and then thought about what I wanted to do. I settled on the concept of 'me time' and started off by grabbing The Incredibles dvd I'd rented the week before which was due back at 6:00 pm.
It began as "I'll watch it with the director's commentary", turned into "I'll watch the features that the commentary mentioned", leading to "they're hard to find, I'll just watch them all", followed by "knowing what I now know I think I'll watch the whole movie again", and finally "lets play the end credits over and over just to listen to the great musical score." I ejected the thing at about 5:45, threw on some clothes and hoofed it to the video store, managing to get it returned just in the nick of time. After that it was McNugget time because I'd had a hard-on for them since last Thursday when the drive-through speaker was broken and the line moved so slowly that I waved off and did Taco Bell instead.
When I got back home I started feeling real guilty about all the phone messages that piled up over the weekend, but half of them would be long distance calls, I've got no minutes plan on my land line, my cell phone's been dodgy since thursday, yada yada yada; so I let them all slide. Sorry everyone -- hope you read this and understand. Especially two of you who are waiting on some christmas presence. ;-)
So I ended up attacking the housework and actually got caught up on quite a bit, then decided to hit the hot tub to unwind before they closed it at 10:00. I got there and did the lengthy shower thing first because I hadn't had one since Saturday due to the weekend Tammy trauma, then went to get into the tub and realized that I needn't have bothered -- the water was so cloudy I couldn't even see the bottom of the thing! Ewww. I reported it to the supers and went back into the apartment... what to do, what to do?
Shazam! Blog!
I'm so behind on this thing and there's so much to tell. I got the new year's post done shortly after midnight then set out to backfill some christmas posts. That led to a trip down memory lane and the perfect FAO Schwartz photo that I just
had to link to. Unfortunately it pre-dates my digital camera and was buried in one of about 40 envelopes in the photo drawer, and it took about three hours to find. (Shutup, you've got a drawer just like it!) Then of course it had to be scanned in, trimmed, resized and balanced; along with a bunch of other cool memories I found along the way, which then had to be e-mailed to the guilty parties; etc., etc., etc.
When I finally finished the christmas post it was 4:30 am and I headed straight to bed. Ooops -- it's a workday and what do you know? I was late again... damned if I haven't gotten good at that lately!
Burnout
So yeah, I had Tam home again for new year's. When I got to the nursing home to pick her up I found out that she'd still been desolate and unresponsive, even after I'd talked to her and told her that I was coming. As a result they'd been unable to get her ready to go out and that took extra time, so much so that by the time I got her home it was 10:30. I can't explain where time goes when I'm with her; I'd left home to pick her up at 8:30 and then bam! Two hours were gone.
So anyways, she'd brightened up by the time we got home but then complained that she was hungry, as she hadn't eaten dinner during her uncooperative streak. Though on the feeding tube for 10 hours a day to ensure that she doesn't starve, she still enjoys regular meals in the dining room on the days that she can, and feels hungry without them. So I made her some beans and wieners and by the time I got that done, her fed and everything moderately cleaned up in the kitchen, it was almost midnight and we weren't making it to Yas' party anymore. Fuck.
I know beans and weiners doesn't sound like a lot; but by the time you puree it, thin it to the right consistency, clean the hand blender so it's ready for the next meal (which has to be done immediately because it's a bitch to clean up once stuff's dried on), nuke the meal because it's now luke warm, get her fed (itself a long process due to her limitations), clean her face, throw out all the used tissues and rinse the dishes... Yeah, it takes a long fucking time.
So yep, we missed Yas' party and watched the countdown on tv, then started watching Aliens because it was one of the few movies available on the mere 60 channels we get on the bedroom television. Two thirds of the way through she decided that it just wasn't her movie (well d'uh) and wanted to watch ET. Great, another late night in the making... I transferred her to the living room and got the dvd going, then decided what-the-fuck and left her alone to watch it while I went back to Aliens in the bedroom, since we'd only just got ET for Christmas and watched it then. That was a huge step since normally I'm afraid something bad will happen when I leave her alone (because it has more than once), but I also didn't want to stay up too late since I knew I was getting worn down, and that's been a trigger point for me really losing it with Tam in the past (which is also bad).
Somewhere near the end of Aliens I fell asleep and then got woken up around 4:00 a.m. by the thundering theme music at the end of ET. I went to the living room to shut things down and transfer Tam back to bed, but she was already asleep and wouldn't wake gently so I took another leap of faith and just left her to sleep on the couch. While there's a danger that she'll fall off of it because it's not as wide as the bed where I tuck her in right up against the wall, in some ways it's safer because she also has no room to roll over and snag the feeding tube. The way she lies on the couch is much safer for the tube than the way she sleeps in bed.
Ah blessed sleep... I enjoyed a full three and a half hours of it before she woke me up to go to the bathroom. Thankfully we made it, which is a helluvalot nicer than when I have to clean her up and change her brief. Of course then she said she was hungry and wanted to start the feeding tube. Joy. That plus getting her morning meds crushed, mixed with water, injected into the tube by syringe, and then of course cleaning the syringe so that
it's ready for next time; took about 45 minutes, by which time I was wide awake and not going back to bed anytime soon.
After that we basically watched the learning channel all day, had kraft dinner for lunch (everything purees with a hand blender and the right amount of water or milk) and had a pretty cozy time. She didn't want me to leave her side for a minute, and was always calling me back whenever I was busy doing some cleanup in the kitchen from med prep or whatever, and wanted me to just lie with her and hold her hand. Very sweet, but of course whenever I tried to kiss her or cuddle up to her she'd just shy away. I don't fucking get it.
After a pretty relaxed day that had me thinking that maybe having Tam home more often again wouldn't be so bad, of course things went to shit. Tam had rather a messy accident (yes, literally things went to shit) and in the midst of my trip to the washing machine I discovered that after all the hours of cleanup work in the front hall the day before, my stupid sickly cat had whizzed again in both corners. I got Tam cleaned up, pushed her 5:00 p.m. meds (only 2 hours late, that's got to be a record), then reconnected her to the feeding pump for it to finish up the final half hour. While that ran I cleaned up after the cat, only to discover that it had also crapped under the christmas tree and I had to clean that up too...
I got to the bedroom to rejoin Tam just as the feed pump was completing it's run with a final flush of water down the tube and into... Tammy's soaking wet shirt! Fuck! I hadn't reconnected the pump properly or something and Tam was soaked in goo, water and backflow from the unclamped tube into her stomach. Fuck fuck fuck fuck fuck fuck fuck fuck! More cleaning, oh joy! Finally, with
that cleaned up it was 8:00 p.m.
Dreading the answer, I asked Tam if she was hungry and wanted anything to eat before we headed back to the home. No response. I asked again, no response. I spent about 15 minutes asking and waiting but she never answered the question, though she'd answer others or squeeze my hand when I squeezed hers, so finally I started getting her dressed to go to the nursing home. Of course while combing her hair I discovered that it was all matted and sticky with goo from the disconnected tube, and had to find some way of cleaning that without loading her into the tub for a proper hair washing, which I was too wiped out to do at that point. A few minutes of combing it out with a wet washcloth later, her hair was done and we headed out.
In the car Tam was being strangely dispondent, then suddenly started sobbing. I asked her what was up; she was hungry and upset because I hadn't fed her dinner. Son of a bitch! It's not like I hadn't asked her a million fucking times! It sure made for a fun drive after that; the kind where I pray for a nervous fucking breakdown so I can check out from the world for a couple of weeks, only of course it never happens because I'm just not that fucking lucky.
On the way into the home, Dianna the PSW, god bless her, immediately recognized that something was up and when told the situation promised to find something for Tammy to eat before bed. The other PSWs also ambushed us and asked if Tam wanted a shower yet. It was magic, somehow the stars aligned and Tam wasn't my problem anymore... I didn't even have to get her changed and loaded into bed!
The drive back home was weird. At the first stop light I sunk into my seat with a sigh and my head collapsed to one side, then I was completely unmotivated to get it back to an upright position when the light turned green. I actually drove home that way somehow, glazed over with my head to the side, unable to summon the will to move anything but my feet on the pedals and my hands on the wheel and gearshift. It's like I was locked up or something... too fucked up!
I stopped to grab pizza at the place across from home and in a total fit of fuckedupedness ordered two giant slices with maranara sauce, even though I know damned well that it's more than twice what I should be eating. I got home, collapsed on the couch, ate the pizza and fell asleep in front of the tv surrounded by pizza carnage. I woke up at 2:00 a.m., had the courtesy to transfer the pizza carnage to the kitchen countertop, then watched who knows what on tv until about 7:00, then finally went to bed with the lights on, clothes on and everything.
Happy goddamned new year.
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Getting her home was an awkward proposition what with the catheter and collection bag trailing along, but we managed to get there okay with the typical pharmacy along for the ride. (Curiously, the small orange packet is cholesteral -- isn't that stuff supposed to be bad for you?) I got her night meds into her and had her all tucked in by about 10:30, then immediately went to bed myself. (Also curious, the only time I don't have insomnia is when someone else is at home with me.)
