Monday, September 18, 2006

Heroic Measures

So saturday night I'm in Toronto at Film Lounge, dancing it up sober at a friend of a friend's birthday bash. At 5:00 a.m. my cell phone rings and I see on the display that it's the nursing home. I can hear them over the music but they can't hear me, I shout that I'm going outside and that they should call me back in two minutes. I make my way out to the smoking area in an increasing state of panic (they've never called at 5:00 a.m. before) and call them back. They tell me that Tammy's running a major temperature and that they think that she's developed pneumonitis; and that as per the advanced care directive I signed they'll try and keep her comfortable. I have trouble picturing that things could be that bad, and say that "I'm not prepared to lose her today" and to send her to hospital if they think it's warranted.

Too shaken not to tell somebody what's going on, I go back upstairs to say goodbye to my friends, singling out Sheldon in particular. I forget how much I told him exactly, but he got the jist that the nursing home had called and that I had to leave, rapidly. I give him a firm handshake and head downstairs to the street for the block and a half walk back to the car. On the way I call Linda, Tammy's mother, and fill her in. She's surprised that they called me over just a high temperature and I mention how they started quoting the advance care directive; and how much that had me scared. She has to go to work and won't be coming in to the home, but wants me to call with an update when I get there and know more. I hop in the car and begin the long drive home, heading down Spadina in heavy fog. The thoughts race through my head and I race down the streets... 120 on the Gardiner, 130 on the 427, 140 on the 401. The taillights ahead are visible out to about 500m, but as I pass the last of them all frames of reference disappear. I don't slow down.

In Cambridge my phone rings and I drop to 120 to take the call. It's Linda and it turns out that she's heading down to the nursing home after all. She tells me to take it easy because of the heavy fog; I don't mention that I'm already practically there. As I pass Sportsworld the fog breaks, the stars come out and there's a text from Sheldon, "Hope all is well buddy." I text back, "They were talking about the 'No heroic measures' order we signed on the phone which frankly scares the shit out of me. I'll be there in 10 more mins and then I'll know what's up. Hoping it's not as bad as all that..."

A coffee stop later and I'm at the nursing home. Kathy, the nurse manager I'm most familiar with, is just walking in and says she's surprised to see me there so early. I tell her what's up and we head upstairs together. The nurse on Tammy's wing fills us in, Tammy got frustrated at noon when they were out of the meal she picked and was fidgety and threw tantrums for the rest of the day (her latest course of meds is not working on her mental health problems, if anything it's made them worse). At bedtime she had a slight temperature so they started monitoring her overnight. It started rising dramatically and they gave her Tylenol to help bring it down, but by 4:00 a.m. it was nearing the mid 40's. They consulted her doctor and believe it's pneumonitis -- Huntington's patients lose coordination as cells in the brain die off and can no longer do any of the things we take for granted, including swallow. Things often 'go down the wrong pipe' and aspiration pneumonia is the leading cause of death. I go to Tammy's room and the bed is empty, they forgot to mention that! Apparently the ambulance picked her up half hour before I got there, why didn't they tell me that, or call?

I try to phone Tam's mom back to re-route her to the hospital but can't get a hold of her, she'll just have to find out the way I did. I text Sheldon some more details and he asks if she's stable. I tell him that I don't know and will have to turn the phone off when I get there, but will try to update him a bit later. "No worries. Take care." I feel bad leaving him hanging like that, he's a recent friend and only peripherally aware of Tam's condition, but he already knew something was up it just seemed logical to keep talking to him.

I get to the emergency room and there's that familiar awkward moment. You don't want to put your name on the triage clipboard because there's nothing wrong with you, but there's no staff around to talk to either -- you have to interrupt someone else's triage to find a warm body with a keycard. "Yes I'm rude; but you just have a scrape on your knee and my wife may be dead..." There's got to be a better system.

I go in and Tammy's on a gurney behind a curtain hooked up to a half dozen sensors. Her heart rate's high at 120, respiration high at 40, temperature high at 41, BP dramatically low. 84 over 40. The nurse introduces herself and tells me that Tammy's temperature's been dropped with ice and Tylenol, and that they'll be starting an albumin IV to bring her blood pressure up. The doctor is told that I've arrived and comes in to tell me Tammy's probably not going to make it, there's a chaplin and counsellors on call if I need them. I say "No that's okay.", not even thinking about Tam's recent baptism and how that would be important to her. I hold her hand for a few minutes and then have to go out and tell somebody. Outside I turn on my phone and call mom and dad, they're going to come in. I text Sheldon an update then turn off the phone and head back in.

Tammy's mom soon arrives and I update her on the situation. She tells them that Tammy's Roman Catholic and asks for a priest -- I feel like crap for not thinking of it. They add the albumin drip, her blood pressure increases slightly, her temperature's almost normal. She's been white and completely motionless the whole time, usually there's random twitches from the Huntington's disease. Her eyes haven't opened, there's no sign if she's been hearing us or not. Suddenly she starts to toss and turn and gets some colour on her cheeks. I'm getting hopeful but then she throws up into the mask, she could choke to death! I pull the mask off and her mom and I turn her onto her side, fumbling for the call button. We can't find it but I hit the yellow button marked 'Staff' on the wall behind her bed. An alarm sounds and there's instantly two doctors and three nurses in the room. They clear her airway and we have to leave the room while they clean her up. When we get back in they clip the call button beside her head and point it out to us. They ought to make that other button red and label it 'Emergency'.

Over the next hour Tammy's mom and I take turns making calls, a priest arrives and performs the sacrament of Anointing of the Sick (last rites). We're informed that her brother has arrived in the waiting room, followed shortly by my parents, and we take turns in the room with Tammy. She still doesn't respond and her colour's gone back to white with slightly purple lips and eyelids. We wait. Dad's undergoing chemo and has to go home to rest; mom stays. Tammy's taken for more x-rays and eventually we get a bed up on the sixth floor. Her brother has to say goodbye, he's leaving for a business trip that afternoon. I have some lunch, and then my mom says goodbye to take the bus back home. It's Linda's turn for lunch and when she's back upstairs she tells me to go home for some rest, since I'd admitted to my all-nighter in Toronto.

I softly say goodbye to Tammy and kiss her on the forehead. And she wakes up!

We ask her how she's feeling and she keeps repeating "I feel fine" and asks for her glasses. It's unbelievable! I stay with her another fifteen minutes or so as we explain everything that's happened, she agrees that I should go for some sleep. All the sudden it feels that everything is better, that she'll be out soon and we'll get to celebrate our anniversary after all (we had just booked a weekend at Fern Resort). I leave the hospital with a spring in my step, music cranked on the stereo. Worried that I'll forget to stop by the nursing home for her glasses on my way back in, I head there before going home. On the way I call mom and dad, my sister in Alabama (who'd just been given the grim news a few hours earlier), and text Sheldon. At the nursing home I give Kathy the story, and have a long chat with her roomate across the hall.

I get home and have to stay awake a while longer to feed the cats, one of whom is on prescription food and has to be fed in a separate room, keeping me up even longer. I turn on the tv to give the cat some time alone with her food and it turns into my usual fatal mistake. I stay up for another hour and a half, and get only two hours of sleep. I have dinner with mom and dad, then head back to the hospital to relieve Linda. She heads home, and mom and dad arrive shortly afterwards, having met Linda on her way out. They stay for a bit and then dad's too tired again, I can tell that he's really wiped out. After that I stay with Tammy for another hour, before using the end of visiting hours as my excuse to head back home.

I think a lot about the decision I made. On the phone passing through Cambridge, Tammy's mom urged me to think about whether or not to send Tammy to hospital. As I parked the car at the nursing home I actually made up my mind that we shouldn't. Of course by then the wheels were in motion and it was already too late. I'd always figured that there would be a slow decline, that she'd end up in hospital for months like her dad; and that 'heroic measures' would mean a chest tube or a dramatic resuscitation with paddles. I never thought it would mean Tylenol and an IV, the result of a simple statement made on the phone in a nightclub, "I'm not prepared to lose her today." If she'd stayed at the nursing home she would actually be dead right now, at this very moment, and if she recovers to get our weekend at Fern this will all have been worth it. But in the middle lurks a terrible grey area, that this is just a long and miserable hospital stay before the ultimate end. I hope not, and more than that I hope for this: That I am prepared to lose her tomorrow.

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Thursday, September 07, 2006


So I had Tammy home for another visit tonight. She's been really shaky lately (there's more about that in the post I never finished/posted two weeks ago) and it tears my heart out to see her lying on the couch watching TV flailing all over the place, knocking her glasses off, banging herself in the head, throwing the blanket off when she's already cold; but there's nothing I can do about it until the damned nursing home doctor calls me back to discuss her meds. Other than that the night went well... We were watching a 9/11 special on Discovery Channel that ended up being two hours long, so I let her stay until 10:00 p.m., again. I always say that I won't but I think it's been at least two months since we've actually left at 9:00 p.m. as planned.

As I'm getting her dressed and putting her shoes on, she starts talking about how her feet hurt and how she needs new shoes. The shoes she has are less than a year old, but in her mind they're many years old and therefore too small, even though they actually fit fine. Basically, her feet are sore from all the flailing around and whacking them into stuff all the time, like the footboard of her bed. I try to tell her that it's not exactly like we can just hop in the car and go to Yorkdale in Toronto like we used to to buy new shoes -- she's so fidgety now that she'd kick the windshield out before we could ever get there and back. (Context: She's a size 12 AAA narrow and you can't exactly buy those shoes just anywhere -- Tallcrest at Yorkdale is it.) I tell her that maybe I should just try to order some New Balance (her favorite brand) online in size 13, but she won't hear of it; she insists that she's size 12 (which really she is) even though she's complained that the last four pairs that size were all old and too small within a few weeks of their purchase. The HD has just made her hyper-sensitive to everything, I guess it's part of the fixations part. There's really no way to resolve the issue with her tonight and we have to get back to the nursing home, so I just stop talking about it. She gets into the wheelchair okay and off we go down to the parking garage.

In the elevator she starts getting weird, I rub her shoulders like I always do on the way down, and she pitches violently forward and almost tips the whole chair over on top of herself. I didn't make the connection that it was me touching her that caused this, big mistake. We get to the car and I prepare to transfer her out of the chair and into the passenger seat, which I start doing by unbuckling the wheelchair's seatbelt. She immediately slumps in the chair and almost slides out of it, and then refuses to let me touch her. Oh shit, we've been here before. Often this ends up with me manhandling her into the car against her will, her being pissed at me, screaming at me, saying that I hurt her, calling me an asshole; and me ultimately having to call the nursing home staff to come get her out of the car. I decide to try a different tack -- I sit down in the car's passenger seat, talk calmly to her and try to resolve what's bothering her. Bigger mistake! She refuses to talk about it and 10 or 15 minutes into the 'calmness attempt', she slides right out of the wheelchair and onto the ground. Just fucking great... she's 6'4" and 170 lbs, all knees and elbows, and even when she's cooperating with me it's hard to get her up from this position without having to manhandle her, again ending up with screaming, yelling and namecalling, not to mention bruises or injury.

Now what? I move the wheelchair so her head's no longer against the hard footrest mounts with her neck bent at a sharp angle, then try to get her legs untangled before she twists an ankle. A fellow resident [Aside: I can't say neighbour because in a building with 300 units everyone's basically anonymous -- she just happens to park across from me yet I can't recall ever having seen her before] caught the last few minutes of the 'calmness attempt' , saw what happened and offers to help. We make a valiant effort but Tam's still obstinate and the best we manage to do is get her bum on the door sill and lean her back across the passenger seat... still far from being safely inside the vehicle. The neighbour (she's certainly become that now) apologizes all over the place that she can't accomplish any more than that, but I know there's just no way to make this work. I apologize to her (can you imagine how much this whole scene has just traumatized the poor woman?) and resign to calling 911. Yeah. Try explaining this situation to the operator and have it make much sense. Eventually the operator and I agree that I need an ambulance and crew to get Tammy up, and the neighbour quietly (thankfully, I'm sure) makes an exit with more apologies. None of them necessary of course, I know she did the best she could. I get her first name and thank her directly by it; after that it's just me, Tammy lying half in and out of the car, and my cell phone. I call the nursing home (again, since I gave them the heads up that Tam was being difficult before I started the ill-fated 'calmness attempt') and update them with the 911 situation, then call Tam's mom to let her know too but end up having to just leave her a voice mail.

I stand there in the open car door for about 20 minutes waiting for the ambulance, straddling Tam to keep her from sliding back out onto the ground. At the 911 operator's request, the car's four way flashers are on so the ambulance can find us in the parking structure; which has the side benefit of advertising me to the 10 or so people that pass by in the meantime and look at me like I'm a fucking wacko, calmly straddling a body sticking out of my car with four way flashers on. Yeah-huh. The ambulance gets there, drives into the wrong building's garage (we share a driveway with the high-rise next door), then onto the upper deck of my garage (I specifically told the operator the lower deck), then it backs down onto the street, goes down the street, back up the street, tries to park on the street; then realizes that the lower deck is fenced in and finally drives into where I'm still standing like a wacko, straddling a body with the four way flashers on.

I say 'the ambulance' but there were actually two vehicles, a traditional ambulance and a paramedic SUV; a total of four attendants. Oh I'm going to enjoy getting the bill in the mail for this one! I try to explain the situation as calmly and rationally as I can, then lower all the windows and unlock the doors (while still straddling Tam to keep her from sliding out) so that they can get enough access into the vehicle to help her. During the whole waiting period after the 911 call; Tam has gone from screaming obscenities at me, demanding a divorce, begging me to still come and visit her (I never said I wouldn't dear!) to finally pleading that I just get her into the car and take her to the nursing home like nothing has happened at all. Sorry hon, but from this position I can't get you into the car on my own anymore, no matter how much you start cooperating now. The upshot of her new-found docility is that the ambulance crew don't want to transfer her to the nursing home themselves, or perhaps they're only allowed to go to the hospital or nothing, and Tammy willingly agrees to let them sit her up in the car and go on about our merry way, further making me look like a complete fucking idiot for having called them out in the first place. Thanks dear.

Anyways, once we're on our way I call the nursing home back to re-update them on the situation: We're coming, alone, and can one or two of the support workers please meet us in the parking lot just in case Tammy's uncooperative again, or just too tired to help with the transfer anymore? Thank you. Then I call Tam's mom and re-voicemail her on the latest situation. Her mom calls back while we're still on the way and we get to discuss things a little, at least she won't be getting her voicemails sometime later and getting panicked unnecessarily. We finally get to the nursing home and true to form; Tam is sweet as pie, refuses the support worker's help and further cements the world's image that I'm some kind of fucking tyrant husband for causing all this fuss in the first place. I transfer her back into the wheelchair by myself without any problems, get her upstairs, transfer her to bed, get her into her pj's, all tucked in under her favorite oversized comforter, kiss her on the forehead, sweetly say good night, step outside the room; and promptly go to fucking pieces.

I mean, how do you deal with shit like this, time after time, week after week? About three months ago the nursing home staff told me I shouldn't take her home anymore, but that just seems so heavy handed and unacceptable to me. When I wouldn't buy it they softened their approach and said that I shouldn't use the car anymore (sensible), but call for wheelchair transit instead. That's all fine and dandy for functioning people; but you have to call wheelchair transit a day ahead of time to book for specific times, and excuse me; but I'm a total fucking mess... I cannot plan, get motivated, or be on time for anything. Wheelchair transit is quite frankly beyond my ability to deal with at the moment -- the reason I still use my car is because I have no idea when I'm actually going to make it in to see her next. I can occasionally narrow it down to specific days but even that's been 50/50 these past few months with a lot of broken promises to Tammy and the staff in between. I don't know -- it's clear that I can't keep using my own car, but I just don't know how I'm going to manage booking wheelchair transit either.


Anyways, I just started prescription anti-depressants this morning (well, yesterday now) and I really hope the damned little pills work. I've got lots of friends who say to feel free and call them to talk about this stuff, but how can you really say things to them like "I wanted to drive my car into a pole on the way home tonight," or "I love my wife, but why won't she just fucking die?" I do love my wife, and I don't want her to die, but these thoughts come to you anyway when you're regularly dealing with this stuff. They're irrational and you'd never act on them, but you can't stop them from coming and they feel too heavy to talk to anybody about. I tried a counselor two years ago but it just didn't work, I couldn't say these things to him either, and without saying them he was a very expensive way of getting no help at all. So you bottle it up, pray to whatever god you believe in (none) that you can deal with it, don't sleep right, don't sleep enough, show up late for everything, hope you don't lose your damned job, or your awesome friends, even though you're an unreliable, unpredictable wreck 95% of the time. Of course the other 5% you're manic, and doesn't that just feel great for a while?

So really, I hope these little pills work because I just gave up my only escape for them; because you don't dare mix them with drugs or alcohol. You have no idea how good it feels to check your brain at the door and dance all day, all night, in an afterhours for 12 or 24 hours at a stretch and leave this all behind in a swirl of beats, vibes, friends and colour. It's not exactly something you pull off sober; but I've done my homework, known the risks, stayed away from the hard stuff and been careful about it every step of the way. And now I've had to give it all up. I have tritely condescending friends who are 'proud of me' for this decision. Yep, giving up my few fleeting moments of happiness to live this eternal drag 24/7 again -- what a great accomplishment! You try it for a while. Fuck.

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