LOL- doesn’t help any of mine. Makes me horribly paranoid (well, more so than usual, anyway) so I steer clear. Pity. 
You’re welcome!
Holy crap. My best friend is disabled and while I’ve noticed that people can be real idiots about it, most of what I see when I’m hanging around with him is more ignorant and/or condescending than outright jerkish. (With exceptions - I once overheard a pair of girls saying “It’s such a shame [his mother] has retards for sons.”:mad:) The thought of people saying shit like this to him makes me want to punch something. My heartfelt sympathies to you and your husband.
Thanks for starting this thread. It’s been very interesting and enlightening.
On to my question. Does the level of dependence he has on you bother your husband, or is he used to it? I haven’t been game to ask my friend how he feels about needing other people to open doors or get stuff off shelves for him or rearrange furniture to accommodate his wheelchair. I think that I’d be really frustrated if I were in his position, but he’s never made a big deal about it. I wonder if it’s because he’s gotten over caring about that sort of thing or if he has to make a conscious effort to be casual.
He’s used to it AND he finds some of it very frustrating. That’s part of the idea of coping skills - how to deal with a chronic frustration.
His dependence bothers him, and at times is even frightening - when I was in the hospital in 2007 he was near panic - what if I became disabled, too? What if I died? Where would he go? Who could he rely on? How would he survive?
Meanwhile, we keep trying to find ways and means to keep him more independent. Like the mechanical jar opener I found for him. Sure, we always had the electric can opener, but jars? Now he can open the peanut butter on his own again instead of needing to get me to do it. It’s a little thing, but it adds up.
He can lean on me because he knows I won’t use his dependence against him, and that I will try to find ways to make him less dependent. This is not true of everyone. He does hate being a burden. He spent much of his adult life proving he was able to take care of himself, and now he can’t anymore.
I also married a man who was disabled when we met. My husband had a heart attack at 33, then bypass surgery at 34 that led to some severe complications. We met when he was 36, and married when he was 37 and I was 26. He wasn’t expected to live more than a couple of years, but we were married from December of 1997 to his death in January of 2009.
Many family members were horrified at the prospect of me marrying someone who was going to die. I knew going in that unless something shocking happened I was going to be a widow–probably a young widow. After our marriage, I always meanly noticed when those same people suffered setbacks or tragedies. I’m not a nice person.
When we married, I made $18000 a year, and his prescription meds were more than that. We eventually did apply for disability, and he was accepted immediately, which isn’t a good sign! I went over 70 thousand dollars in debt over the course of our marriage, despite continuous health insurance and disability payments.
We seriously considered divorcing once he was on disability. It would have been a financial godsend, and I would have felt no guilt whatsoever.
Most of the time, Steve looked very normal, aside from occasionally having bad color. He was a big, tall man, so he rarely got overlooked or treated as an infant. I did have one doctor tell me that if his health failed it was my fault. He got a new doctor.
I almost started a thread like this a few times over the years. I wish I had. Broomstick, bobkitty, I hear ya.
Oh, the doctors…!
Let me state, first of all, that MOST doctors, nurses, etc. we’ve encountered have been professionals, and often much kinder than their job description required. But some…
Apparently, some doctors (usually older men, but not always) seem to think my role in life is to wait on my husband hand and foot. Or assume I’m his sister because they can’t wrap their minds around the idea I willingly married a cripple. These doofuses seem to lack comprehension that, with him disabled, I actually have to work for a living. No, I can’t be at home watching him 24/7. Nor can I control what he puts in his mouth, whether or not he takes his medication, or any of a dozen other things these numbskills seem to think I am responsible for.
A classic exchange:
Me: “I bought Husband a battery-operated jar opener and an electric can opener. He’s thrilled, because now he can get his own lunch.”
Doc: “Why did you do that? You should be getting him lunch.”
Me: “I have to work.”
Doc: “You can’t come home and cook him lunch?”
Me: “Not really - it’s 45 miles each way.”
Doc: “Why are you even working? Someone needs to stay home and take care of him.”
Me: “Are you volunteering to be the family cook, doctor, or to give us enough money to pay our bills? Because the money has to come from somewhere.”
Seriously, where do these people come from? And why would he be opposed to something that makes a disabled person more independent? Crazy! :rolleyes:
WHAT? They can keep you off the transplant list because you can’t afford meds?
I’m speechless.
Butterscotch, I take it you are not from the US, then?
Regretably, many Americans feel that that is a reasonable policy: you can’t pay for the maintenance meds, you don’t get the life-saving transplant.
Despite being American, I happen to disagree with that.
Hi. No, I’m not from the US, I am English (but living in Italy) and horrified! What kind of system is that?! I knew you had to have insurance in the States, which seemed quite drastic to me, but to be denied a transplant for financial reasons seems pretty barbaric. I sense this is a discussion for another thread though. Sorry for the hijack. I’ve learned a lot reading this thread, but that really shocks me!
It’s not my thread, but I personally think a surface discussion (obviously not a debate, or a ‘whose system is better’ thing) of this is quite appropriate here, as it’s something that I as a spouse have to deal with on a regular basis but that the ‘typical’ person probably doesn’t know.
They can reject you for a lot of reasons;
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If you’re critically ill, to the point where the chances are high you won’t make it through the operation.
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If you are non-compliant. This was one we struggled with for a long time- Mr K actually had a comment in his chart that he wasn’t compliant because he’d had the audacity to 1) tell a new doc that he’d already tried a particular medication, it had helped somewhat but the side effects (he lost most of his hearing) weren’t worth it and he wasn’t really keen on giving it another go, and 2) ask questions about new treatment options. Remember that Mr K was misdiagnosed for nearly 48 years, and has an inherent distrust of doctors- he needs to ask questions, but this particular doctor didn’t appreciate that. We finally managed to get the note removed, after I wrote a very strongly-worded email.
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If you engage in self-destructive behaviors. They’re not going to give a liver to someone who continues to drink, or a heart to someone who won’t lose weight/maintain a healthy lifestyle, or lungs to someone who won’t quit smoking. Not an issue for Mr K, luckily.
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Poor support system. There’s a whole section in the transplant application about family, friends, hobbies, spiritual/religious activities, etc. This was a MAJOR issue during Mr K’s hospitalization the summer before last; the first night he was intubated and put in the ICU, his (‘adult’) kids stayed in his room. His son went out and got drunk, and when he returned his sister tore him a new one right next to the hospital bed. The nurse ended up kicking both of them out. Mind you, this was before the hospital staff had met me. I had to smooth a LOT of ruffled feathers, and an incident like this could easily have cost Mr K a spot on the list.
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And yes, finances. They figure that if you can’t afford the anti-rejection medication, you’re not going to take it- and why would they waste an organ and a minimum of a million dollars in hospital costs if you’re not going to follow through with treatment? His doctors were trying to hold out for his disability insurance to kick in as a supplement to the health insurance I carry (that would be December this year), but at this point everyone agrees there’s no way he’ll make it that long.
I want to say something about doctors/nurses/medical professionals in general. Broomstick is right that most of them are professional and kind, but when you get a bad one… oof. My biggest complaint is when they get pissed at you for asking simple questions (see ‘compliance’ above), like you should just take their word for it because there are things you Just Can’t Understand. I went toe-to-toe once with the nurse who heads the respiratory floor where Mr K spends his time when in the hospital; she was talking about a particular bacteria he harbors in his lungs that’s somewhat unusual to see in people (farm animals, yes, because it’s soil-based). I asked her to spell it so I could do some research (I work with horses, so it’s possible I was bringing the bacteria home- I’m buddies with the county agriculture folks, and it’d be easy to get samples taken of the soil at work, but I’d need to know what to tell them to look for); she snapped at me, told me it wasn’t necessary to do that, I wouldn’t understand what I was reading, blah blah blah. Mr K must’ve seen the look on my face because he started to intervene, but it was too late. I told her in no uncertain terms that my three college degrees and I would probably be able to muddle through, and if not I had access to plenty of people who would be willing to take the time to explain it to me, and perhaps she needed to dial her attitude down a notch or ten. :mad:
I understand that they probably put up with a lot of annoying, crazy, stupid people every day, and that it gets frustrating. But this truly is a life-or-death situation, and if I feel the need to ask questions, you’d bloody well better suck it up.
Yes, it is. It’s not “Ask a particular spouse of a disabled person”, it’s “Ask a spouse of a disabled person”. Any such spouse. Really. 
That was incredibly generous of you, Broomstick. And I mean that sincerely.
As Bobkitty noted, unfortunately there are a lot of people who deserve organs who don’t get one for small reasons simply because there are so few donated organs available and the decision must be made about how to do the most good with a very limited resource. I have read that the rate of organ donation in Italy
dramatically improved after the high profile case of an American little boy who was murdered in Italy and whose organs were donated to Italians. Unfortunately, I think the donor rate in America still has a lot of room for improvement, and in my opinion part of the problem is that America still has an “opt in” system for organ donation (unlike many European countries like Italy who assume consent for organ donation unless the person opted out).
Might have been as simple as that she herself wasn’t sure off the top of her head how to spell it (Burkholderia?) and the snappiness was a reflection of her own defensiveness about that.
I think this is what you were referring to earlier, when you told me you were bitching. All I have to say is I feel for you. I also never noticed until now that the reason why the bill is always handed to me is because the waitress is too uncomfortable to look at my boyfriend and so looks at me instead. You put a lot of passion into this post, and rightly so. It is incredible the amount of misunderstanding and lack of empathy broadly apparent in our society for disabled people. (even disabled zombies) 
Most poorly timed zombie ever. 
tvaetbjorn, sadly, if you weren’t aware, Broomstick’s husband passed away on Saturday, and understandably, other matters are taking priority over her posting here for now. I have asked for this thread to be closed.
She had no idea. I’m sorry, I hadn’t seen what she was posting I would have let her know.
Ah, I didn’t notice Broomstick had been posting in the other thread today and they were talking to each other. I should apologize myself if Broomstick does wish to reply.
It’s OK folks - I know she’s a new poster and likely didn’t know. No offense.
Actually, he probably would have thought the “disabled zombie” line pretty damn funny. No need to close thread.