Crossposts:

http://troubleinchina.livejournal.com/622268.html

LET ME TELL YOU ABOUT OUR DAY.


At the end of July, Don returned from a painful visit to his family back in Alberta and was really really really sick. Like, not just a little sick, but not able to eat food sick. The first thought was it was a flu or something, because I had also come down with something icky, and Don usually gets a lot sicker than I do from things I can brush off in a few days. But after a few weeks, he went off to DOCTOR STUPIDASS, who stopped listening to Don's symptoms and started instead making grand lists of WHAT IT COULD BE!

Theory One: It's an infection!
Theory Two: It's bowel cancer!
Theory Three: It's a parasite!
Theory Four: It's Diabetes!
Theory Five: It's an ulcer!

Oh, hey, you wanna know what our theory has been? That Don's stomach is reacting to having taken a lot of pain medications when he was in Alberta, and maybe his stomach and related things need a break. "Can we change any of his medications to something he can take as an injection?" "No." "Can we get him admitted to a hospital so the medications can all be tinkered with an a GI specialist can see him?" "No." "Can you change any of his regular medications so that they're not drugs he has to take food with, so he can go back to taking his medications?" "No."

So, for months Don was unable to take his antidepressants and some of his pain meds. He tells me roughly 2/3s of his medications he was no longer able to take without throwing up.

We spent months here playing with his medications just from things around the house because Doctor Stupidass kept refusing to change Don's meds. He went back to taking Oxycotin for breakthrough pain, which was less effective but at least he could take. The pain management people put him on the medicinal form of marijuana, so pills, which at least helped with some of the nausea, but not really enough. He started taking his once-a-day 12 hour morphine tablets twice a day so he could get through the day, and found that this meant he threw up violently every time he tried to take medication for breakthrough pain. He finally convinced Doctor Stupidass that while waiting for someone to diagnose him with something maybe he could change his antidepressant to something that Don could actually take, so he prescribed him the lowest possible dose of a new one, with no plans or discussion on ramping that up. This will become relevant later.

Throughout, Doctor Stupidass decided to try and mask all of Don's symptoms rather than treating them. So Don started taking medications that are supposed to help with acid reflux. Since acid reflux isn't really the problem, I have NO IDEA what they are supposed to do, but since I am a USELESS SCREAMING HARRIDAN WHO ONLY WANTS HER HUSBAND TO GET MEDICAL CARE SO I CAN STOP WITH MY WIFELY DUTIES OF GIVING UP MY FUCKING CAREER TO TAKE CARE OF HIM FULL TIME WHAT THE FUCK DO I KNOW. He started taking fiber supplements (which, oh, hey, I better get my STUPID USELESS SELF out to the pharmacy to get more of) to help keep everything moving. But actually listen to the symptoms? Actually listen to the patient? What madness is this?

Which brought us to the HAPPY FUN TIMES of January, which was when Don finally got to the point he was in so much pain he could no longer function at all. My husband went from being someone who went out two to three times a week, who did all the grocery shopping, handled the laundry and garbage duties, did most of his own self-care, and could be counted on to toss a frozen pizza in the oven or make a sandwich or pasta or something to leaving his bed twice a day to go to the washroom, and trying to make that happen as little as possible. He went from eating a reasonable amount of calories a day to eating so little he lost over 50 pounds in a few months. He went from having somewhat of a variety in eating things to eating cereal bars and apple sauce and this is an improvement over a few months ago when he was eating dried cereal and nothing else.

Since January we've been to the emergency room twice, and both times Don's been given a shot of something and sent home. We've begged them to admit him and help him with the pain. They said no, because "that's pain management", but agreed that he needed to be in a hospital. They also discussed their theory of what was going wrong, which was - TA DA! - that he was taking a lot of medications that were very hard on his stomach, no one had been giving him any nutrition information about how to help with any eating problems that would cause the issues he's been experiencing, and it is very obvious that he needs to be seen by someone about GI issues and probably spend some time in the hospital while everything is dealt with.

OH WAIT. I FORGOT! The other reason they won't admit him is Don can "feed himself and get to the bathroom."

Gentle reader. Don can feed himself and get to the bathroom because I am at home 22 hours a day. Don cannot make a meal. He cannot get out to get food. He cannot open half of the pre-prepped stuff we have in the house. He cannot care for his hair or his beard, or have a shower without it being something we plan two days in advance. He cannot make the phone calls to follow up on doctor's appointments. He cannot get his own medication, and there is apparently no service that will deliver it. But of course, why would he need help? He's married, and it is MY FULL TIME JOB TO TAKE CARE OF HIM. And I should fucking SHUT UP AND LIKE IT, because "Don's medical condition has nothing to do with your having to give up your career."

LIKE SWEET FUCK IT DOESN'T. YOU KEEP TELLING ME YOU'RE SENDING HIM HOME BECAUSE I AM THERE. I CANNOT TAKE CARE OF HIM WITHOUT THE MEDICAL SYSTEM HELPING ME, AND I SHOULDN'T HAVE TO GIVE UP MY GOD DAMNED LIFE IN ORDER TO DO IT.

So, seriously, in emerg, I tell them "Look, this situation is getting dire. My husband has chronic depression that is currently untreated because he can't take his medication and he can't get out to see his counselor because he's in too much pain to make the appointments. There's enough medication in our household right now to kill three or four people, at least. Can you at least get someone from psych to see him? Maybe they can get him a bed and get him into the system."

Psych says "Well, he doesn't have a plan on killing himself right now, but we can get him an emergency psychiatric nursing appointment in two days."

And then send him home from emerg. (This is still January, or maybe early February at this point.)

So. We deal with getting Don off to the psych nurse at a nearby hospital, which is a drama all in itself and involved the taxi driver explaining that taxis shouldn't be required to pick up people who have wheelchairs because wheelchairs are heavy and, you know, I have a hard enough time with bullshit about wheelchairs & wheelchair users at the best of times but when it's 8:30 in the thrice-damned morning and my husband keeps being told that he's not sick enough to be treated by anyone and we're going to the psych nurse because I'm afraid one of us is going to die I am NOT REALLY HAPPY TO PUT UP WITH THAT, so that is why we no longer use Yellow Cab, in case you are in Halifax and wondering who NOT TO CALL.

Anyway, Don goes in to see the psych nurse and I, of course, foolishly think that he should be fine by himself and go get a coffee so that some fucking JACKASS can tell my husband "Well, you know, you're young, and they're inventing new treatment for pain every day, so you just need to think positive!"

She does, however, point out that he's on a ridiculously low medication for his antidepressant and maybe she can refer him back to his psychiatrist that hasn't wanted to see him because, you know, it's just pain that's causing his depression and so there's not much the psych can do anymore.

That brings us to roughly last week, which I think is before the snowstorm we had to go through because heavens forfend he get a prescription refill from his doctor over the phone, no no, he should go to another appointment. In a snowstorm. And have the doctor get some of the prescriptions wrong So I can get LECTURED by the pharmacy people about how many meds Don is taking AS THOUGH I DON'T FUCKING KNOW. Or maybe it's after the snowstorm. Anyway. We call the taxi, who is grumpy about taking Don anywhere because OMG HE WILL GET WHEELCHAIR COOTIES ALL OVER HIM OR SOMETHING I DON'T EVEN FUCKING KNOW because I no longer let taxi drivers put the damned wheelchair in the trunk because they are accidentally damaging it from not knowing how to handle it, and we get there, and then we wait, and then Don sees the doctor for 45 minutes and the doctor says "Oh, hey, we should increase your antidepressant, and if you're having trouble sleeping Take More Drugs, and I'll write your GP a letter about the GI stuff" because apparently my advocating and Don advocating and the pain management people advocating and the emergency doctors allegedly advocating all amounts to nothing because we are STILL WAITING FOR A GI APPOINTMENT.

Oh, right, and then the taxi company got huffy about a wheelchair user being in their car and in total that 45 minute appointment took four hours between when we left and when we got back for something that could have been discussed over the phone.

Am I forgetting something? I am no doubt forgetting something, although I loved this week and the pain management nurse being scheduled to phone Don up for follow-up about his pain and not calling and no one telling us why she hadn't called at the scheduled time until I ended up calling them the next morning and finding out that there had been a family situation and she hadn't come in to work the day before, which is fine, but the last I worked in a medical clinic you called the patients to let them know there wouldn't be anything available that day and to reschedule but WHAT DO I KNOW I AM A SELFISH BITCH WHO WANTS TO GO OUT AND GET A FUCKING COFFEE WITHOUT BEING AFRAID MY HUSBAND WILL DIE OR SOMETHING.

Oh my gosh, people, I just want to die. My eye problems are really fucking dire and of course the only day they could see me was the same day as Don's psych appointment so I'm back on the waiting list for that and the last time I tried to talk to someone about how I am so stressed and angry and have I mentioned my husband is disabled they basically decided to ask a bunch of shitty questions that indicated that they have no idea about anything to do with disability and I am just not up to doing disability 101 when I'm trying to find help in keeping it fucking together for a few more weeks and I can't work on my thesis and it doesn't fucking MATTER Where I get accepted if I can't FINISH THIS STUPID SHITTY THING and I have had to drop out of everything I am doing and the whole thing is so shitty and someone wanted to know what I thought about Dal's accessibility services and I laughed until I cried because, you know, the whole damned university system is designed to assume you are single or have no dependents and if you have any dependents there is someone else taking care of them and I just want to write my fucking thesis and be done with it all forever but every time I leave the fucking house Don doesn't eat because he can't open a fucking pudding container.

A few weeks ago I considered calling someone and telling them that I have a serious mental health condition and a gun just so someone would help us.

(I don't have a gun.)
(I don't even know where to get a gun.)
(I am actually pretty afraid of guns.)
(Let's not talk about guns.)

And the thing is, he's lonely. Except, not really, because his emotions are all fucked up because if he pays attention to how he feels he just notices how much pain he's in, and there's no one else. Talking to people requires effort, he's still recovering from his mother's visit because he had to talk to her and shit, but mostly he just wants to sit and zone into something like a video game or truly terrible Harry Potter fic, and there's no one to talk to at all, there's just me. Me to keep him from noticing how lonely he is, and he needs me here. Not even over there, in the other room, right here, to keep the loneliness at bay but not require anything of him and they never turned the heat on in the building because it never got that cold here, all things considered, so we bought a space heater and so this room is the only room in the apartment that is actually warm and I just want to scream I hate it so much but he can't go anywhere else and he can't really deal with me not being here and I just want someone to help us.

But there is no help, because he's not sick, he's crippled, and while to us this is a horrible indication of how much he is suffering, to them, it's how cripples should fucking live.


Which brings us to today. In which the doctors at the rehab hospital said "We can't admit you because you're too sick to get physiotherapy. All of your problems are GI problems. From what you're saying you need to be admitted via pain management."

- Pain Management doesn't have any hospital beds.
- Pain Management referred us to Rehab.
- ER referred us to Rehab.

Don is too sick to get any help now.

And when I finally lost it and pointed out that I was giving up my career to take care of him full-time, that this was a horrible situation we were in and that if she can't help us could she just tell us someone who could, anyone in Halifax at all, if there's no one in Halifax just tell us that so we can deal with that information, she told me that I was too emotional, and that my having to give up my career had nothing to do with Don's health.

And that's when I realised that the problem is that I married him, gentle reader. I married him so that Don would always have a next of kin who wasn't his mother, no matter where we went. I married him so that I would be the one they called, no matter what, even if we lived in places that didn't recongize de-facto marriages. I married him to be the person that would be the one they called before they did anything to him that he wasn't agreeing to, so I could tell them no.

I married him, and that's why they won't help him. Because he has a full-time unpaid caregiver at home who can ensure he can eat and get himself to the washroom and wash his hair once every three weeks. If I wasn't here, they'd find a place for him, but since I am, they won't.

When I left the room, they went around in circles with Don for 20 more minutes about why he possibly thought a bed in a hospital would help him, and apparently finally agreed to put him on a four to six week long waiting list and he might, maybe, at the end of that, get a bed.

And then we came home. While we were out Pain Management called to see how he's doing.

I don't even know what to tell them. Do you think if I told them that I'm crazy and I have a gun, they'd find a bed for him?

Don thinks they'd find a bed for me, and make him stay at home.

He's probably right.


Before you ask: I'm afraid there's nothing you can do to help unless you come over here and help me do laundry. There is, literally, nothing else that you can do. I'm sorry.