Mortality a phone call away
So I got a call from the nursing home while at an employee farewell lunch today. I let the phone take the message (because nobody should ever [ever!] answer their phone in a restaurant) and then grabbed it to see if it was anything urgent. The message said 'call us back' but didn't sound particularly urgent, but I went outside anyways and returned the call. Good thing: Tammy had been choking on her own saliva for the past hour! They handed her the phone so that she could hear my voice, hoping that that would calm her down enough to stop the choking. Talk about really fucking scary -- for the first minute or so all I could hear were coughs and gags in response, but then damned if their idea didn't work and all of the sudden she wasn't choking anymore!
One of the things I said to her was that I'd be there soon to hold her hand. Liar. That was 1:15 and I'm still not there yet... I can blame work but it also doesn't help that my left eye's been swollen and watering out of my head since saturday for no apparent reason (it got stuck that way at pirate practice; ahrr) and my friend Yas has been scare mongering me all day that it's pink eye and really contagious. (Due to the way he's seen schools respond to it, but since when don't they overreact to cover their ass?) I thought I'd swing by Urgent Care on the way to the nursing home but now if I do that I won't get there until long after Tam's asleep. Sigh. Google says that pink eye is only really contagious if you got it from a virus, but after 48 hours it's still just in my left eye so that's not it. (Hey, left one's lucky.) Yeah.
So since that phone call came in I've been useless and I'm still here at work. Hiding. I've said for a while now that Tam probably only has a year or two left and that we've made our peace with it. Apparently not. Today I've drifted off and imagined not making it through christmas, or to next christmas, and it sucks. Fuckingly crushingly sucks. And I got frustrated and yelled at Tam again this weekend over something stupid. Why?
(
Huntingtons kills off part of the brain and sufferers lose coordination to the point where even swallowing doesn't work. Pneumonia due to aspiration is almost always the cause of death.)
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Starship Troopers still plays out pretty good
So after blogging I turn on the tv to unwind and Deep Blue Sea is about halfway through and I watch the end of it. Then Starship Troopers comes on and of course it demands to be watched... Will I ever just fall asleep at night again like a normal person?
Quest for faith
Well I was going to have Tam home Friday night again, but I saw my parents for breakfast on friday (I do that a lot, last kid syndrome) and they were telling me that Tam wanted to go to church on saturday. The two of us have never been religious... I'm a non-practicing catholic, she's a non practicing baptist. Or at least, she was. At the nursing home she started attending all the different services offered, and somewhere along the line has decided that she has to become a catholic before she dies or she won't get to heaven (or something, it's hard to get real explanations out of somebody who can barely speak). My mom, fortunately, is a devout catholic and is helping Tam along her journey, but it still falls to me to get her to and from church.
Back when Tam and I were dating, she was a real morning person. She waitressed at the The Cozy Diner and was literally up at 4:00 so she could take her time getting ready to open at 7:30. I don't know if that was just because the job demanded it or what, because these days she is anything but a morning person, and if we're going to make it into church at all it's going to be the saturday evening service. With the feeding tube being a ten hour run, there's just no way I can have her home overnight on friday and then get her to church at 6:00 p.m. My parents were seeing her again friday afternoon, so I had them broach the idea of my having her home overnight saturday instead, after church. They called later that day to say that Tam was okay with the idea, so I made some quick friday night plans and thought I was good to go.
I was ready to head out of the office friday night when the phone rings and it's the nursing home. I answer it, expecting it to be some crisis or other (since I'd already spoken with them earlier in the day) but instead it's Tam wanting to talk. I hate these calls! Tam can't hold the phone and is hard enough to talk to face to face... it takes several attempts of the phone being handed back and forth between Tam and the nurse before she manages to get it to her ear in such a way that she can actually hear my responses.
She asks if she's coming home on friday. I explain that it is friday, and no she's not so we can go to church like she wanted to the next day. She asks if she's coming home on friday. I explain that it is friday, and no she's not so we can go to church like she wanted to the next day. She asks if she's coming home on friday. I explain that it is friday, and no she's not so we can go to church like she wanted to the next day. She asks if she's coming home on friday. I explain that it is friday, and no she's not so we can go to church like she wanted to the next day. She asks if she's coming home on friday. I explain that it is friday, and no she's not so we can go to church like she wanted to the next day.
Do not adjust your browser, that was the actual conversation, just with several identical minutes of it left out. I hate leaving things with Tam unfinished, but no matter how I explained things she just wasn't getting it, and I was either going to scream at her or just hang up (water drop torture; it works). Mercifully, the nurse came back on to ask if we were done, and I agonized about things for a bit then said yes, leaving it unfinished. I hope she didn't cry much after that.
So saturday I pick her up a half hour before church, thinking that would be plenty of time given that it's only a block away. She wants to talk about the feeding tube. "Honey, you wanted to go to church, we have to leave now or you'll miss it." "You have to ask the nurse how the feeding tube works, I need the feeding tube." "Honey, you're finished the tube until tomorrow, now it's time for us to go to church." "Call the nurse, you have to call the nurse, I need the feeding tube." And on, and on. Finally I get a flash of brilliance and tell her about my talk with the dietician; that I have an appointment on tuesday morning to learn about the tube, that she'll be weighed on monday, and if her weight hits the target then the amount of time per day that she's on the tube will go down. That breaks her spell and I can get her ready for church, only now there's just five minutes to get there. Argh.
We sneak into the back of the church like last time, and find the aisle that we can head up the farthest yet still get a seat on the edge for me. Last time she couldn't hear the service, so I want to get her as close to the front as possible. This time she can hear but that presents a new problem, she keeps trying to ask me questions about the service
during the service. Joy. It finally ends without my somehow having killed her (though having died of embarassment myself), and we meet up with mom and start answering her questions after everyone has filed out.
In some ways I'm happy that Tammy is taking this whole conversion thing seriously and has a lot of questions. The priest, having met her, is okay with bypassing the entire learning process and baptising her as soon as we can clear the paperwork. Part of me is amazed at that, yet another part almost offended that there's not at least some attempt to teach her something first. (Why do I even care? I've been non-practicing for years and don't believe in god... I have no answer to that question.) My mom, ever the trooper, has hunted down a lot of info from her cousin in the RCIA (no, it's not the Roman Catholic Intelligence Agency, rather something to do with conversion) and works through it every week with Tammy. Perhaps the priest knows this.
Anyways, on our way out the priest was still in the vestibule and came over to speak with us. There's a problem -- Tam and I were not married in the catholic church, and apparently we have to have our marriage blessed by the church before she can convert. For those keeping score, we got married in 1997, and in 2004 I broke down after months of holding my ground and we renewed our vows in the spring. We got to write our own though, and I conveniently left out faithfulness, the main sticky point in my initial refusal to do so.
Then in the fall of 2004 Tam wanted to renew them yet again on our trip to Vegas. That time I didn't hold out because the venue was a drive-up wedding window, cheesy enough to be worth it and I had already caved in the spring. So apparently, now we're on to marriage number four, and I feel like it's a total sham. Yeah, I'm devoted to Tam and seeing this thing through to the end, and if she wants to convert and this is what we have to do to do it then so be it, but damn...
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So what do you do?
If it's got a computer chip in it but it's not a computer, it's an embedded system; and I am an embedded developer -- currently of the hardware design persuation. Yep, I'm the guy that picks the chips and other little electronical bits and figures out how to wire them up to solve your problem. I've also written the computer programs that run on them (firmware), the programs that work with them (software; windows and otherwise) and have done my fair share of technical writing (specifications, user manuals and help files).
So anyways, today I completed my first customer-ready prototype of my first design at my current job and thought that I would show it off. What looks like just a cable has actually got a tiny processor hidden in one end of it to make two things that wouldn't normally plug into each other, plug into each other. It's the least complicated design I've ever done but I'm kind of proud of it because I hand built it, and it's made of some of the tiniest components you can get. At my old job we had a binocular microscope for doing that kind of work, and it's amazing how steady your hand gets when you can see what you're doing. I'm the only hardware guy at my new job though, so this one was done with nothing but reading glasses.
How small do the little bits get? This small:
Yes, I rock. Any questions?
Triumph and tragedy
So last night was cool. I thought that my friend Tamara had left the country already and was pretty bummed out about not having been able to say goodbye, but then Monday she e-mailed that she's leaving this week and was having a farewell dinner last night. Needless to say, I made it to that and had a great time... saw so many people too that I haven't seen in a while (Anthony, Carter, Kenny, Becky) and even ended up in a strip club. I don't know what this trend is of girls wanting to go to strip clubs these days, but I'm not complaining either. So endeth triumph.
Today after work I went and saw Tam at the nursing home again. She wanted to go home but it was already 7:30 so I said no, there wasn't much time and the weather was bad (which it was; snowing and getting slippery out tonight). I told her that I'd read to her instead but once again she wasn't into the whole reading plan (Monday night's story that never got told here), so I caved in and grabbed her stuff to get her ready to go out. That brightened her up but then it all went to shit, or rather, piss. Yes, the curse of the overhydration from that fucking feeding tube struck again, and Tam had peed so much that the brief was soaked through, her pants were soaked, the sheets were soaked, and even the mattress was... soaked. I buzzed for the support staff and Tam just really started coming apart. If this pee thing is driving me nuts you can imagine its effect on her, having to live with it 24/7, I've only had to deal with it that one night so far.
After a few minutes one of the girls came by to answer the buzz, but we had to wait another twenty after that for them to be done with the patient they were with and come over to help Tam (it takes two because of Tam's height and awkwardness). I waited in the hall for the time it took to get Tam cleaned up and everything, then went back in. By then it really was too late to take her out, and they had her in her pajamas and all tucked in too. Tam had cried through the whole cleanup and just wouldn't stop after that. Crying for the good pants she thinks she ruined (they'll wash), crying that the stupid tube still aggravates her, crying that it's hooked up to the pump all day, crying that she's peeing all the time, crying that she couldn't make it out.
Most of all though it's the can't make it out part. She's convinced that she's stuck in that bed and that room for the rest of her life. What do I say to that when it's mostly true? Sure I'll have her home fridays overnight and the odd weekday trip to see the kitties, but in a couple of months even that freedom will be gone. I held her hand for a half hour and told her all the reasons it would be okay and wasn't as bad as she thought, but I couldn't break her funk. Finally it just seemed too futile and I took off her glasses, tucked her in, turned out the light and kissed her goodnight.
I left her there still crying, and have no idea what else I could have done. Fuck tragedy.
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Hoses noses roses and moses
So somewhere on friday between the a.m. partying and the p.m. partying, I had the presence of mind to call the nursing home and find out when Tammy would be done her tube feed on Saturday, which was at 5:00 p.m. After much sleeping in I managed to get to the home around 6:00 and pick her up, and had her at home for an overnight stay. Another hurdle cleared in the battle to feel normal again after the surgery, though I still don't feel much better about it.
I had to have her back by 10:00 a.m. sunday so they could start the feed in time for it to be finished at a reasonable hour (it runs for 10 hours!) but that of course didn't happen, Tam was up and down all night. I used to worry about her being dehydrated because it was so difficult to feed her, now if anything she's overhydrated! I have never seen anybody pee so goddamned much in one night, and we're talking about me changing briefs here, not just helping her get to the bathroom. Definitely no fun.
So having her home was good but exhausting; I was up at 1, 2, 3, 4 and 5 a.m. dealing with this whole damned pee business. The alarm was set for 8 so I could get her up, ready and make her a decent breakfast (she still enjoys my omelets, somebody has to) and only be a little late. I think at 5 though I turned off the alarm, and got a good four hours sleep before waking up on my own. Prolonging the inevitable, I made myself breakfast and got showered and ready first, then tried to wake Tam. Only she wouldn't wake up. I tried at 9:45, 10:00, 10:30... she just wouldn't stay awake. I mean; I suppose you can force somebody to wake up, but I never do that to Tam. Partly because I love her and if she's sleepy then I want to let her sleep, but mostly because she's so much fucking work once she's awake that I kind of relish in the respite when she doesn't wake easily. Shitty I know, but you'll understand once you've been there.
So anyways, she didn't get up until around noon, at which point I wasn't offering breakfast because we were late enough already. She insisted on it though and by the time I got it made, fed her, got her up, changed, and dressed; we were plenty late. I think it was about 2 that we got to the nursing home, which means she'd be on the feed until midnight! Ooops. Hopefully they cut her short since I went to great pains to explain that she'd had a full breakfast. (A lie. She had so much trouble that it took forever, and she gave up after 2/3rds because the omelet was cold and gross.)
So yeah, having her home overnight was a victory but still surreal, and I'm still fumbling around in that whole 'our lives will never be the same' depression. I asked the nursing home for an appointment to get me trained on how to set up the tube at home, but that's another whole can of worms. I mean, ten hours in one position while she's hooked up? Hardly a normal home visit.
And I still can't hug her.
And the cats can't sit with her. Sigh. I'd rather just not deal with it but I know that for Tam those ten hours at home sure beat the same ten hours at the nursing home. I guess we'll manage, we always have.
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The quick and dirty update post
I can't believe I haven't posted on here in almost a week. Reason being, the whole feeding tube thing with Tam has been bumming me (and her) out, and I wanted to do a detailed treatise on how I'm feeling. Well fuck that -- it's apparently just too heavy for me to sit down and get serious about. Let me sum up: Despite the nursing home's assurances to the contrary, it felt like this huge turning point, like Tam would never be coming home again. Well on Wednesday night I actually had her home for an hour, which helped a bit but not much. Every time I transfered Tammy to or from the chair, she'd complain that the tube hurt and I had to handle her with kid gloves, and couldn't even give her a decent hug.
Thursday night I was feeling as bummed out as ever and agreed to visit some friends at Roxannes (a local strip club). I wasn't into it and neither were they really, so we moved on to Renaissance (a local gay bar; did I mention they were lesbian friends?) Earlier in the day I'd agreed to take them to TO Friday morning because one of them had an appointment; couldn't get a lift, no bus fare, blah blah blah (help me obi wan, you're my only hope). So anyways, there I was at a gay bar having a merely okay time (still depressed, just two blinks and a gulp from really coming apart) so I thought 'what the hell?' -- we need to be in TO the next morning, I hate rush hour traffic, let's just head there and party all night. We landed at Bebe which was pretty cool (Deko-ze was spinning, need I say more...) but it closed at 3:00 a.m. so we headed to Comfort Zone (where Deko-ze was spinning) and partied until it closed at 7:00. Yes, it is true, I have finally closed the zone!
We cleaned up a bit at a friend's and had breakfast, dropped off the first two at their appointment, then I took the third back with me to Kitchener (company, woohoo!) Around noon I found myself a mere three blocks from work so I started heading in. Uhm, reality check... I was in thursday's clothes, wednesday's shave, smelled like cigarettes and was still pretty mashy. So I turned around and went home to clean up before heading in, but did I ever make it to work? Nope. Did I fall asleep? Well, no. Foolishly I checked e-mail and found a notification from a dating site I hadn't used in months that somebody had 'expressed interest' in me, and wound up responding, updating my profile and cruising a bunch of sites until 7:00 when I realized I'd promised to meet friends at 8 to head into Toronto for my friend irGO's set at System. So I cleaned up and off we went.
From extreme depression to extreme partying. At least I lead a well balanced life...
So apparently, I'm at Comfort Zone
Some day I will figure out how in the world I ended up at the Zone at 4:00 a.m. on a friday morning. But not today... too fun for use brain. Ugh.
Chair story
So this morning I had an appointment with the physiotherapist at the home to see about upgrading Tammy's wheelchair. Again.
We started off with a rental back in December of 2001, then got the CCAC involved to hook us up with a physiotherapist to order a permanent chair. She arrived with a loaner and we returned our rental, then spent weeks swapping in cushions, armrests, backs and casters; to dial in the perfect fit. I'd always thought that a wheelchair was a wheelchair, but apparently there's more options than you get buying a car! From order to delivery was another month or two, and then the whole summer and fall before the government paid us back, no thanks to the striking bastards at OPSEU! That first chair folded up nicely to fit in the trunk, and was two inches narrower than usual with 'space saver' arms to work in the confines of our apartment. Tam was instructed how to foot propel (since her arm control wasn't up to the task, even then) but never did, always relying on someone else to push her around.
Flash forward to the fall of 2003 when Tam was at Freeport hospital. She was having trouble keeping upright in the chair, so Freeport's physiotherapist brought in a reclining model for her to trial. I quickly dubbed it quasimoped; a hunchbacked beast you could barely manoeuvre, and forget about getting it anywhere by car. Regardless, Tam loved it, until the day she discovered the power of her own two feet. Freeport, unlike our apartment, had a lot of places to go, with wide hallways and no carpets to drag her down. Tam was thrilled and kept gushing how "I didn't know I could do that!" Which basically just pissed me off, because her mom and I had been trying for years to get her to move around on her own. Anyway, quasimoped was too limiting for her newfound freedom, so the original chair was modified with a new cushion and casters, to tilt her back more while still letting her get around easily.
A year later, Tam was at the nursing home and her condition had declined. She'd begun having seisures, but they were mini-mal (blackouts only) and we didn't recognize them for what they were. All we knew was that she'd be found on the floor out cold, having tumbled out of her chair; usually with it on top of her because of the seatbelts. It was time to look into a safer chair, so enter physiotherapist number three. What did we end up with? You guessed it, the return of quasimoped! Only this time the physiotherapist wasn't as thorough and the chair didn't really fit. (To me it seemed like a racket, just about everyone in that home got the same brand and similar model of chair from the same vendor -- gone was the objectivity of the first two physios we'd worked with.) Worse, Tam was still tooling around the home under her own power, but now in a chair that weighed a gazillion fucking pounds with a nasty-ass steel bar behind her heels for the tilt mechanism. It only took a week for Tam to get her feet caught while moving at full steam, and damned if it didn't nearly tear them off -- leaving her ankles bloody and swollen to the size of softballs! The chair was still on trial and I wanted it fucking gone, but was vetoed by both the physiotherapist and Tam's mom, who had never seen the damage until after it had mostly healed, and didn't believe my descriptions of how bad it was.
Son-of-quasimoped became chair number two, but problems with it continued. Tammy still managed to tip over and take it with her, only now it was a chair that weighed a ton and a half and they had to cut the seatbelts to get it off of her. Twice actually, with replacements paid for out of pocket (sigh). Eventually they caught her in a grand mal seisure and figured out what was going on, so she went on anti-seisure meds and eventually they stopped, but not before they added shoulder straps in response to my request for a five point harness (so that she couldn't throw her center of gravity off enough to tip the chair). The shoulder straps had an un-anticipated effect; now it seems that Tammy was sliding out from underneath the belts and still wound up on the floor, but at least without a chair on top of her. Again I asked for a five point harness, but was told by the physio that they didn't exist. One of the support workers then figured out a way to loop the lap belt through the cushion handle, this worked and got the physio's blessing but left Tam supremely uncomfortable, not to mention eventually ripping the handle from the cushion cover. Fortunately we had a laundry spare from the cushion that was changed out at Freeport -- we pressed it into service, but the cover hasn't been laundered since (ewww!)
At some point Tam lost the ability to get around on her own, so they started leaving the chair reclined all the time. Looping the belt became unnecessary, and the shoulder straps, a huge pain in the ass that Tammy hated, disappeared. Now the issue became the foot rests. Unlike the cast ones on the first chair (which remains our travel chair since it fits in the car), son-of-quasimoped came with molded plastic ones, and they quickly broke under the strain of continuous duty. They replaced them with metal ones, which would be sensible but for this: Instead of castings, these were thin steel plates with mounting holes drilled in amateurish fashion, bolted to adjustable hinges. They look like they were made in someone's garage, have no heel straps, and the hinges constantly get pushed out of alignment. Tam's feet are always slipping off of them, and her ankles are bruised and cut from the sharp edges on the damned things as a result. They may as well have installed axe blades!
A few months ago, son-of-quasimoped suffered another failure when the backrest mountings broke. (Due to Huntingtons, Tam's coordination is shot and her motions exagerated, so whenever she shifts position she tends to straighten out, pushing really hard with her feet and back.) By this time the physiotherapist had quit, which I wouldn't have considered much of a loss except that she was the link to the vendor's service department, so now we couldn't get the damned thing fixed, and the brakes were also failing. (Get the idea by now that this chair was a cheap piece of shit? Me too!) Eventually the nursing home got set up with a new supplier who came in and did an assessment, sans physio, and got Tam into another loaner. Several parts were salvaged from son-of-quasimoped, including the axe-blade foot rests, but there's a taller frame and longer cushion that fits Tam perfectly (recall that she's 6'4"), so she's much more comfortable and not nearly as hard on it when shifting positions. Yahoo!
Back to this morning now, and our first appointment with a new (our fourth for anyone who's counting) physiotherapist. Before committing to the recent loaner, and in light of Tam's feeding tube and continual decline, we're going to try some radical alternatives. Apparently there's a chair called a Bentley often used for Huntingtons patients, because it's got spring loaded parts and stands up to more wear and tear, so we're trying to get one for a trial. What we did get to sample was a
CareFoam CF200, which is nothing like any wheelchair I've ever seen. (Or the government for that matter, as apparently they don't cover it.) Tam instantly loved it, but it was being delivered to someone else at the home so we couldn't keep it to trial. They're going to try and get the CF510 though, since it has an adjustable tilt which should make getting Tam in and out of it a lot easier.
I also asked the vendor about replacing the axe blades on the loaner, and produced the cast footrests from the travel chair to show him what I had in mind. He clipped them onto the loaner and took the axe blades with him. D'oh! It never occurred to me that they might fit, because son-of-quasimoped had a different set of quick releases. Sigh. Finally, I mentioned Tam's tendency to slide out from under seatbelts, and asked about our options. You know what the new physio suggested? A five point harness...
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A day that nothing interesting happened
After a smashing 4 hours of sleep, I got up, had breakfast at mom and dad's, and went to work. On my lunch break I jogged and decided I should take some snaps and share them. But it was overcast and cell phone cams aren't the greatest, so basically it's a nice tribute to Six Feet Under. Then, for completely futile reasons, I worked late and didn't make it in to see Tam tonight. Yes, I suck.
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This whole insomnia thing sucks...
But on the bright side, I got to watch the Mythbusters episode I
missed earlier and now know that if I manage to inflate it and strap
myself to it after leaving a plane at 300 miles per hour, I can float
gently down to the earth for a soft landing on an inflatable DC9
escape slide. Oh, that and how William Shatner changed the world, and
that Canadian film sucks equally bad (as well?) as Canadian TV --
ridiculously scripted characters were poorly overacted in a piece of
crap called "Expecting" that I strangely watched anyways. What was I
expecting?
Useless
That would be the word that best describes me for the rest of the weekend. After a round of sleep that was more tossing and turning than sleep, I'm awoken (so I guess I was sleeping) around 10:30 a.m. by a call from the hospital, asking if I can bring a few items of Tam's from the nursing home. No problem I tell them; then fall back asleep. About twenty minutes later I get a call from some friends looking to make weekend plans, and quickly commit to meeting them at 6:00 p.m. Why? I have no idea -- I'm basically just stumbling through life at this point. I also took a call from my parents wondering how Tam was doing, so I filled them in and gave them her room number when they offered to visit.
I think mentally that let me off the hook. I recall having had some breakfast and some lunch, and being unable to drag my ass off the couch, but I must have done so because I woke up
from bed at around 4:00 p.m. Hmm. Now I have to shower, get ready, swing by the nursing home, eat, and make it to Hamilton in just two hours. Greaaat. About 5:15 on my way from the nursing home to the hospital, I call my friends to give them the heads up that I'll be late, totally feeling like crap because I think I've been late every damned time I've ever gone to see them. (It's not you, it's me...)
I get to the hospital and Tammy's actually in pretty good spirits. They've had her on tube feed all day and she's no longer ravenously hungry, but she hasn't had anything to eat or drink by mouth for at least a day and her teeth are looking pretty funky. Fortunately one of the items I've brought is her toothbrush and we quickly get that and some hair brushing out of the way, and she's a normal human again. I also clean her glasses and set them on her, they were sitting on the back corner of the night stand
exactly where they were set down the night before when they took her to the OR. Tam's got the thickest prescription imaginable and is totally blind without her glasses, and she was left without them
all day. Argh.
They bring in dinner and I'm thinking, "Hey, this works out well, I can feed her before running off and abondoning her." Except, I can't. They've brought in a regular dinner, apparently not having been told about Tam's need for pureed foods and thickened fluids. I make an inquiry and find out that it's too late to get another dinner, but they manage to scare up some jello, pudding, and thickened drinks; which Tam was only too happy to get. They also never sent anyone in to help feed her -- as near as I can figure, if I hadn't been there, Tam just simply wouldn't have eaten. Once again I'm getting really cheesed at this whole system, but politely let them know that Tam needs to be hand fed. Oh well, at least I got a free dinner out of it, because I have no idea when I'd have gotten around to getting dinner on my own.
After Tam's eaten she's tired enough to go straight to sleep, and I extract myself early with only a little guilt. I call my friends as I pull out of my parking spot and explain to them, sorry, I'll be a little later yet, but should be there at ten to eight. Magically, the stars align and I get to their place at exactly 7:50, though why I committed to going there last night I have no idea. In some ways it's what I needed most and in others I'm just not into it and wrap up the visit around 2:00 a.m. This is actually rather late for me since Tam's due to transfer back at 9:00 a.m., but I hadn't seem them in a while and they were really hoping I'd stay the night. Sigh.
When I get home I do something I haven't done in over a month -- I go straight to bed without turning on the tv or computer and wham! I'm asleep. I've got the alarm set for seven but death wish takes over when it rings and I shut it off and go back to sleep. Tam has transferred out of many a hospital, and they're always hours behind schedule. At 8:00 a.m. the phone gets me up again though and it's my mother in law, Linda. Tam's brother and sister are out of town on a working vacation and she's been taking care of their kids. She'd only just got home and received all the messages I'd left her, and was so apologetic for not being there for Tam. Apparently she'd told Tam over and over again that she'd be with her through the whole procedure and felt really bad, which made me feel awful for her because it's not our fault that we were blindsided with this on a day we only expected a consult! Oh well, given Tam's crisis of not having been able to eat in the preceding days, getting it done immediately was exactly the right thing for her. Anyways, her mom committed to visiting her this afternoon and bringing the kids along, which I know Tam will absolutely love.
I stay up after the call and get ready to head in to see Tam. It's 9:00 a.m. when I pull out from home so I call the hospital just in case, on the very outside chance that for the first time ever in life, a transfer out was happening on time. But of course not, they were there
5 minutes early!!! (Tam must really hate me.) I go there anyway to pick up the wheelchair and thank the nurses, but I notice that Tam's breakfast (pureed stuff this time, yay!) is untouched. Despite my telling them the night before that she needs to be fed, it appears that nobody had bothered (boo!). I snag the chair and withold the thanks (je suis prick).
At the home I wait while the nurses check her out and get her settled, then I give her some applesauce and juice; but she's so wiped out that she can't finish either. Damn. I know she's got the tube feed now so it's not a big deal, but inside I come apart and just quietly hold her hand for the next hour. (Why did that feel like such a chore while we were waiting for her to go into surgery just days before?) I don't want her to see me cry so I keep it in. As she drifts off to sleep I kiss her goodbye and tell her I'm letting her rest so she can be up and around when the kids get there, but really it's so I can slink off and come apart in private.
How did I spend the rest of the day? Doing absolutely nothing, and wishing I had Tamara or Leanne or Shannon to curl up with. Useless, completely useless. Is this dealing with it, or hiding from it?
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It's not over til it's over
No sooner had I clicked send on my last post from the car, when I realized that I couldn't get out of the hospital garage without $5.00 change. I turn around to go back in but the main door is now locked, so I pick up the phone to get buzzed in. The ever helpful switchboard tells me to go to emergency -- deja vu all over again, but easier this time as I no longer have a Tam in a wheelchair with me, and can use the stairs. Down in emerg the change machine is of course
broken, so it's another trip through the verboten inside passage up to the main entrance, only to encounter a machine that bears extreme prejudice against my only $5.00 bill. Fortunately there's some gentlemen hanging out by the entrance, and I swap fives with one of them to try again. That should be it right? Nope, the machine's not taking that one either, though it courteously accepts all manner of swearing without complaint. Will this stupid night ever end? Well okay, I shouldn't have stressed out because the same very fine gentlemen (no doubt card carrying members of the VeryFine Juice Patrol) also have five bucks change. Finally I can get into the car, head home, and leave this wretched night behind.
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To quote professor Farnsworth...
Great news everyone!
Well the doctor came in and told me that Tam's procedure went off without a hitch, and that she should be discharged tomorrow. I brought up the home's concerns about not having the supplies to tube feed her yet, and also that she's only gotten one meal down in 48 hours and is probably too weak to eat normally, and so will require the feeding tube to regain her countenance and should probably be kept for observation. Boy did he get right cheesed!
"Well they knew that's what she was here for and they should be prepared. People don't believe we should give up precious surgical beds for this type of procedure in the first place and we certainly can't babysit her here over the weekend."
Well hello! We thought we were only coming in for a meeting and that she _might_ get the procedure this weekend. Sigh. He's going to call the home tomorrow and hash it out with them, which is fine by me because being the middle man in this little shindig SUCKS LARGE! (And I'll bet that the home can scare up the supplies if they really have to anyways. They've done it before when Tam's come back from the hospital on a weekend with a new prescription.)
Despite the grief, a huge thanks to Dr. Kilmurry, Jen, Melissa, Colleen, Ron, Mary-Anne and all the others whose name tags I wasn't fast enough to read.
So now Tam's transfering from recovery to her room (for all five minutes that they'll keep her in it from the sounds of things) so goodnight monsieur blog, for I am going home to bed.
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Paging Dr. Godot
It's 9:40 and another estimated surgery start has come, and went. And through it all I remain, sitting in an uncomfy chair, holding her hand, and waiting.
But soft, what nurse through yonder doorway breaks? Tis Jen, with news of the sun. We finally get to go down to... to... the waiting area.
Kill me. Kill me now.
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Waiting to get hosed
So we're at the hospital and it's already been a mini ordeal, though not for reasons you might expect. I finally got the call about 10:00 a.m. this morning that Tam should be there at 2:00 this afternoon. So after lunch I began the laborious process known as sitting at my desk and marking time, until heading off to grab Tam. I marked too much time though and left at 1:30, right about when I planned to be picking her up. Ooops. I guess it's because I'm not exactly looking forward to this...
So I get to the home and now I'm in a hurry, and Tam wants to tell me about something instead of letting me get her loaded into her travel chair. Frustration is growing. I get her loaded up and grab her transfer papers from the nurse and ask her where we're going. Grand River Hospital is the only answer we're given. This is gonna be rich...
So we get there and go in the main doors but no-one is at the information desk and we have to grab the white phone to switchboard. All they can tell me though is the doctor's office number, and from the sound of it, straight from the phone book. So I call it and his receptionist tells me we should go to the emergency department, which at GRH means that you go outside, around the building, and down a level. I go the interior way that we're not supposed to go (I'm pushing a wheelchair and the outside route is a long way when you can't take the stairs), and of course someone tells me to go outside and around. Fuck that!!!
I take a different hallway and we finally get to emerg, but of course no-one is at their desk either. I put our name down on the clipboard, and we wait. And wait. Finally someone comes out of the back and calls us by name, without even looking an the clipboard. Hmmm. Apparently we're not just meeting the surgeon today like I'd thought, but are actually booked for surgery! Admitting went looking for us after the nursing home told them we were on our way but then we hadn't shown up. Good catch! I'm glad the admitting lady found us and that she (and everyone else we've met since) was super nice, but damn -- couldn't we have been given a little more direction up front?
Anyways, the surgeon is great and possibly even younger than us (which surprised us a bit), and he explained the whole procedure, even taking extra time to answer Tam's questions which don't exactly come out easily these days. So here we are, consent forms filled out and Tam in a gown with an IV and oxygen, just waiting to be wheeled into surgery in another 45 minutes or so. Tam is scared and fidgety, I'm holding her hand on one side and blogging by phone on the other. (You sit in an uncomfortable chair for three hours and hold someone's hand, and see if you don't find something else to do too!) And another chapter of our lives is about to begin...
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Heck in a pink Hilfiger
So today we had an all day meeting at work with some outside contractors, and I decided to be almost over the top (i.e. over the top for anyone else but me) and wear my new pink Hilfiger (complete with 80s double cotton powder blue insets, ooo!) Amazingly, it garnered almost no commentary, but whatever...
The meetings were okay but in the afternoon I picked up a voice mail from the nursing home, Tammy had been unable to eat breakfast or lunch, and was completely distraught, bawling, and getting lots of comfort from the social worker. Oi! How to deal with this during a workday?
Backstory: Tam's been having more and more trouble eating lately. For more than a year the nursing home has been pushing for a feeding tube, but in the beginning it wasn't really necessary and her mom and I surmised it was just the nursing home looking for the easy out, as opposed to dedicating somebody to the (admittedly difficult) task of spoon feeding her every meal. Their concerns even had some validity, as she had been losing weight continously from the time she got there, but here's the point -- unlike Freeport Hospital, they were not giving her any supplements between meals or even giving her higher calorie meals. People with Huntington's, and Tam's no exception, often have uncontrolled movements that cause them to burn extra calories. At the third round of feeding tube meetings (the first was by phone, the second a family meeting where we were ambushed -- they said it was to talk about what the Huntington Society could do to help train their staff, but no one from the HSC was there and all they did was talk feeding tube), we talked about her calorie needs and they agreed to put her on supplements (Boost, Ensure; their brand is called Resource) between meals. Well wonder of wonders if that wasn't working -- officially she never regained more than 2.5 kg, but while having her home every weekend and getting her changed I could see major differences on her frame and it was great!
Unfortunately, it was also short lived... she's looking pretty thin and gaunt again and is definitely having more troubles eating than she used to. So we had the fourth family meeting a few weeks ago and agreed that it is now time to do this feeding tube thing. We told them our concerns though, about it being an easy out for the nursing home, but they were adamant that they will not change their resource planning and will still have a nurse dedicated to feed Tammy at each meal. The tube is just there as a supplement, and for those days when Tammy just can't eat (because they will happen, more and more unfortunatley). Presumably they won't change that without talking to us again, but I should follow up on that presumption to be sure (which I only just thought of now while typing).
So anyways, we were scheduled to meet a surgeon tomorrow to discuss the tube and were told that the surgery might even be done the same day, so today's news while sobering, was not a super duper crisis. The weird thing is that the surgeon's office has not called the home, or me, to confirm what time tomorrow this meeting will happen, at the least let's hope they give me enough time to actually get Tam to her appointment. (You think!?)
So yeah, I'm a bit aloof at work for the rest of the day, and trying to coordinate dinner with Bonnie tonight (happy birthday Bonnie!) to boot. I called the home at 6:00 to see if Tam was able to get dinner down, because if she hadn't I'd have to cancel with Bonnie and see what headway I could make feeding her. (They try to feed her sitting up but I've been feeding her laying down for years with far more success, so I could probably have gotten dinner into her in the comfort of her room had they been unable to manage it.) Yahoo! Tam ate a dinner and a half and I don't have to cancel with Bonnie, but then it turns out that she couldn't get a sitter and had to cancel with me. That's what I get for making plans with her on short notice (but it wasn't my fault you see; I'd e-mailed her last week not knowing that she didn't have that address anymore, and it was only by luck that she e-mailed me her new address on Tuesday and I got a chance to re-invite her). Why can't life ever be simple? Because then it wouldn't be any fun... d'uh!
So what
did I do after work tonight? I went to Roxannes of course... Hey, the shirt demanded that it be seen somewhere, and who am I to argue with a shirt? It was actually pretty cool, I met a girl visiting from Halifax and chatted her up for an hour or so, and then an old friend came over and gave me shit for talking to her best friend from out east. Teehee. So of course I bought a dance -- I don't argue with fate much either.
Footnote: I have never had so many conversations with so many people as the night the pink shirt debuted at Comfort Zone paired with my "I Support Single Moms" t-shirt (with a silhoutte of a stripper on a pole). One guy who was introduced to me on the patio told me how much I sketched him out on the dance floor, then how surprised he was to meet me and find out I was cool. That should probably worry me but fuck it, I'm proud!
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Yay, I jogged again
So a few weeks ago I ran the Oktoberfest 10k, which was like a HUGE DEAL because I
dislocated my kneecap back in March. (I like to dance really hard but apparently there's a too hard -- I never got the memo.) Of course there was a long road to recovery involving tons of physio (woops, I still need to claim the last two months worth!) and many weeks of training. In the week or two before the event though, work got real busy and I missed a bunch of training. I had done the 10k distance and had covered more than my target time, but always in intervals of run/walk -- the event was the first time since the incident (since the 2004 event come to think of it) that I would go the distance non-stop. I was confident I could do it but a bit fearful as well.
As it turns out I had nothing to fear, I
beat my previous year's time by two minutes, and with a gammy leg to boot! So that wasn't a problem, but then I compounded it. My friend Tamara was leaving the country for six months or more, and we'd talked about getting together for one last round of partying that weekend. I couldn't make Saturday night because of the race the next day, but damned if I was going to miss Sunday afternoon! I dutifully headed to Toronto and made my way to Comfort Zone (because
it's comfortable), where I ran into a whole bunch of people (everyone except Tamara, basically) and danced my ass off until the wee hours of the morning. Beyond them actually... I think it was 2:00 a.m. when I left for home with my friend Stacey in tow, and we stayed up watching cheezie movies until probably 10 a.m. (Yes, I called work and took a vacation day -- lord knows I've got enough left of them.)
So anyways, day end I take Stacey back to Toronto and call it a night but here's the thing. My leg was hosed! (Well okay, it was hosed by the time I left Comfort Zone.) So short story long, I didn't jog for two weeks. Then I went to Comfort Zone again, danced my ass off more and my leg survived, but I caught my usual danced-and-went-outside danced-and-went-outside nasty ass cold, and have been struggling with that for over a week, so still no jogging. So today I finally made it out jogging -- it was cold as hell, had been thunderstorming all morning, and was still misty rain, and I tried to bag out of it by calling Shannon to see if she wanted to do coffee over lunch, but THANK YOU SHANNON! She was busy, and I actually jogged. 11 intervals of 3:30/1:30 jog/walk and a distance of just over 8k. My triumphant return. Sigh.
Behind the backs of those we love
So twice in the past week, the topic of going behind the backs, or
against the wishes, of those that we love, those living with
Huntington's Disease, has come up. A friend in the support group was
approached (ambushed) by his children and told that they have to have
a 'family meeting' to discuss the 'future of their family' without mom
present. He e-mailed the rest of us in the caregivers support group
for our opinions. My hackles went up immediately and I let him have
it, or rather, let his kids have it with both barrels. Then today I
heard another story of how another 'living with' I know was outed
behind her back to the friends in her social group -- despicable. I
just can't believe that both of these things have happened, are happening.
Why do some people think that those living with are not qualified to
have their own opinions, make their own decisions, about their care
and quality of life? Sure there's a lot of things about my
relationship with Tam that are pretty messed up, things I keep
secret -- the partying, the swingers; things I do to 'balance' my
situation that I know won't meet with her approval. But those are my
things, when it comes to her care, her quality of life, I always
involve her in the decisions. I know recently she asked me about
rescinding the DNR on file at the nursing home and I haven't got to it
yet, but we also never finished the discussion, and will be getting
back to it with her mom in a proper family meeting, one that
includes her. And we've been very up front with her about the whole
feeding tube situation, pushing it off as long as possible and
involving her in every discussion, every meeting (in fact the three of us
are meeting the surgeon to discuss it further on Friday).
There are so many things this disease takes away from them -- why
do some self righteous folks take away even more under the conviction
that they're helping???
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WinAmp pisses me off sometimes...
So yesterday I ran WinAmp and it prompted me that a new version was
available, so I downloaded it. Why? Because apparently they've
bloated it to the point that it's now so net connected that it has
it's own security vulnerables. It's a @#!! mp3 player people, what
were you thinking???
So anyways, I install it; and does it transparently re-install with
all the settings intact? Shit no! I have to walk through the wizard
all over again. I carefully tell it not to support any video file
extensions other than it's own, then get asked again if I want audio
and video support, and say yes to video so that it will at least
handle it's own format. So what happens today? I've got a long
playlist loaded up that I'm somewhere in the middle of, open an .asf
video file (Microsoft format) to show somebody, and it opens in bloody
Winamp! Now my playlist is no longer loaded, and sure I can re-load
it but I'll no longer be in the same place that I was, unless I want
to scroll through 5000 songs or so to find it.
Why why why why why did it open in Winamp when I carefully walked
through the wizards (again, just like the last five times I installed
an update this year) and told it only to support it's own format?
I've been a winamp fan for a long time but lately it's really starting
to get on my nerves, and it's only a matter of time before I dump it.
Thanks WinAmp guys for fucking up a good product...
I blogged therefore I'm spammed
Oh look, eh? Only my second post and someone already had a comment. I must really rock! Oh no, wait... it's just a plug for a health insurance site. So the way it works is like, I still really rock; but since nature always seeks a balance, some leech had to suck in proportion. Bummer. Cruel fate. Poor leech. (Fucker.)
And then there were two
Well today went better. Despite staying up until 3:00 a.m. last night (Aliens was on and I'd never seen it, and then the Mythbusters I missed while out watching Doom came on at 2:00, so of course I had to watch that...) I woke up when the alarm went off, and actually made it out the door by 8:00 a.m. First stop, Urgent Care, who made me the proud owner of about two dozen horse pills (Amoxicillin in 30 calibre rounds) which should cure up this stupid cold. I got into work by 10:00 and actually knocked out a pretty productive day. My last five prototypes are almost fully assembled, should be done by day-end tomorrow (famous last words).
Snapshot: Just got home from tucking Tam into bed at the nursing home and choked down the last horse pill of the day. Although my cold's not better (they said I'd be contagious until 24 hours after I started taking the meds) I'm not coughing anymore and the doc said if I washed my hands well and avoided breathing, it would be safe to go to the home. So I did, Tam was happy, and hopefully an entire wing of residents has not been decimated in my wake. Sigh.
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I blogger
So that's it then, I've started a blog. There's so many heavyweight things I've always wanted to post online... will I ever actually get to any of them? Who knows.
Snapshot: It's 10:33 and Robocop 2 is playing on Spike. Apparently there was a Robocop 3 (I watched it earlier today) who knew? In between them I went to the theatre and saw Doom and had dinner, and now it's official -- I know that New York Fries' hotdogs suck, and will not be tempted to order them ever again.
Reality: So I didn't see Tam this weekend. Friday night I hung around the office too long, and by the time I had dinner and got to the nursing home she was already in bed. My cold has still been murder and I didn't want to be there too long (don't want to infect the other residents) so I resolved to pick her up Saturday morning after breakfast. Only I stayed up until 6:00 a.m. watching who knows what (well, some of it was porn on Mxcess) and didn't wake up until after lunch -- and then my cold was worse with a lot of coughing and general death wishiness. So I called the home and told them I wouldn't be in, and cancelled all my weekend plans. I got caught up on a lot of reading this weekend (September and October's PopSci magazines). I also thought I'd make it to the urgent care to get some antibiotics but procrastinated my way out of it. Some days I hate being me. What else? Picked up my clothes at Just For Him and dropped off the two pair of pants that need hemming. Sigh. Boring pants come in just the length you need, the good ones only seem to have one length per waist size and they're always too long (yeah, yeah, if my waist were smaller it wouldn't be an issue). Anyways, today's efforts consisted of getting caught up on the mail and bills (took over an hour for three weeks worth! I hate being an adult) and finally got the kitty stains cleaned up in the front hall. I also took a call from the home, Tam was quite despondant and difficult because I hadn't see her. I knew that would happen and I hate it, but I did the right thing by staying away, didn't I? I mean, part of me enjoyed not having to deal with the responsibility this weekend, even revelled in it, but then on the flipside I feel so depressed about doing that to her. Oh well, I called mom and she was going to go in and visit her, with dad's approval, I hope she got it and saw her. Tammy I love you, I miss you, and I'm sorry. Tomorrow I'll get those antibiotics taken care of, I want to see you again.
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Tear here
I started blogging on November 6th, everything below this is just pages that were added later to collect stuff that was out of sequence with the regular blog.
My first video, right-click and Save Link As...
FuckYou.avi
