Ask the Spouse of a Disabled Person

Miscellaneous and Personal Stuff I Must Share
21

Well, since you walked by…

lapin blanc, other than being tiny, do you have any other disabilities? Do people assume that you do, or that your ears don’t work? Broomstick has already mentioned people talking over her husband’s head; do people do it to yours, bobkitty?

My mother was offered disability when she was 30, but rejected it out of pride. She’s spent her whole life lying to herself and to everybody, including her doctors (she’ll take extra painkillers before going to the doctor - one advantage of having my sister-in-law as Mom’s GP is that they see each other out of a doctor-patient situation), the parish priests, our teachers; the fact that nobody would have believed me made the amount of work I had to do around the house even worse. She never leaves the house unless she’s feeling fine; nobody would believe that she spent half the morning in bed before crawling out of it and wouldn’t leave the house until 5pm to go to some social thing or other. I couldn’t ask anybody for help or just, you know, whine without being laughed at and told something like “oh, c’mon, it can’t be that bad! Nobody would have (a girl my age) cooking, you’re exagerating! And (your parents are perfect anyway, since they’re so involved in the PTA).” She was bedridden for over a year when I was in 11th and 12th grade; the only people who knew it other than my nuclear family were her doctors, my BFF’s mom and my parents’ Team of Our Lady.
So in my case the frustrations involved are those linked to dealing with someone who’s somewhat disabled but hides it from the world, rather than those of dealing with the world’s reaction to someone with a visually-evident disability. It can be like being permanently going to get the car from the disabled-only spot while she waits sitting on a bank near the shopping mall’s door.

22

Has he (or you) ever considered carrying a “prop” cane to distract holier-than-thou’s who feel compelled to bitch about using a handicapped space when Anyone Can Tell You’re Perfectly Fine? I’d be tempted, for sure. Plus you can use the cane to whack 'em if they annoy you (JUST KIDDING. Mostly).

Have you had much trouble with handicapped spaces not being available? Either because boneheads have used 'em illegally, or because there simply aren’t enough? My mother (looked perfectly healthy, just missing one lung) had a fair bit of trouble with that. And a grocery store near us… well, there are spaces that clearly used to be reserved for handicapped (near the door, wider, a striped area next to them) but aren’t any more (no signs or symbol on the pavement). While those spaces are nice to nab if I happen upon an empty one, I keep wondering if this means there aren’t enough reserved spaces.

23

Well, on a regular basis in restaurants I would get kid’s menus until I was about 30. Even if it wasn’t a busy restaurant. Hello…boobs? Not a kid!

As far as actual disabilities go, I have issues with walking very far or standing for more than a couple of minutes due to back pain and also a weird nerve issue in my left leg that never got pinned down and I’d swear in the last few years that I’m starting to get a bit of arthritis in my ankles. Plus the last year or so I’ve been having nerve problems with my left arm and now that I will have insurance kicking in this January I will be able to get that checked out. Mostly not that much but the older I get the higher the chances of various interesting orthopedic problems cropping up get.

Plus there’s the way the world is not built to accomodate somebody at my level. The light switches in my house are a foot over my head. But the house dates from the 1940s so it’s not like they had ADA compliant building codes.

24

Oh yeah, I spent a few days at a hotel last year and, after leaving my luggage in my room, asked the receptionist what would they do if they got a really short customer. She didn’t even understand what was I talking about, I had to explain it slowwwly several times. In the UK, many doors have an arrangement where you need to turn a bolt and the handle at the same time, making “opening a door with something in your hands” a total bitch. I’m 5’4" and the bolt was set higher than my head - and this was a place they had redone that same year!

Apparently the notion of “there are grown-ups under 5’” had never occurred to anybody involved in the work.

25

Yeah, that was kind of my point. I’ve been through so much shit it makes me cocky sometimes about my superior ability to handle adversity. But every once in a while someone comes along with an experience I really can’t imagine, and it humbles me. That’s all I’m saying.

26

It’s a good idea on one level, but I don’t think I’d do it because it would feel dishonest to me. I seldom have people confront me about parking in the handicap spot when I’m picking up my husband, and if they do, I just look them in the eye and say “I’m here to pick up the cripple”. The “c” word usually shuts them up on the spot anyhow.

It’s a jerky response on their part, anyhow. Someone can look fine but have something seriously wrong with them. Someone who has one of those new-fangled prosthetic legs may have a normal-looking gait, but they’ll still have more trouble on any sort of slick or uneven surface than people with natural legs.

The law says you can use the handicap placard regardless of whether the owner is driving or a passenger, and you can use it to park in the special spot if you’re picking up the placard owner. I attribute some of the misunderstanding to difficulty in the ignorant understanding that “disabled” does not necessarily mean “totally helpless”. There’s a continuum between “totally able” and “unable to move”.

On the flip side, my husband and I have at times gotten grief for NOT parking in the handicapped slot! Seriously, isn’t that ridiculous? On a good day if he feels up to it and there is other parking not to distant from our destination he’ll park in the “normal” spots. Yet there are people who insist that because he’s disabled he now MUST park in the special spaces! I dunno, maybe they’re afraid he’ll take that most-distant parking space and thereby force the able-bodied to park closer to the door or something.

27

I know it sounds shocking and insulting, but as a ‘medical person’ I can see the practical sense in it. They don’t mean you should leave him. I know of two couples in this sort of situation who are unmarried but live together in long-term, committed relationships; one never got married and the other cancelled their planned marriage when the financial implications became clear.

28

To anyone who cares to answer: did your spouse’s disability affect your decision about whether to have kids or not? Broomstick, you mentioned your husband can’t have kids; did you consider adoption?

29

My understanding, though is that if you have been married you ARE required to physically separate into two different households precisely to discourage divorces of convenience. We’ve been married 20 years, it’s a little hard at this point to say it didn’t happen.

Yes, I am aware of the practical nature of the suggestion, but I find I am morally and ethnically HORRIFIED at it. Rather like suggesting cannibalism as a means of surviving extreme starvation - yes, it’s very practical but still horrible to contemplate. What kind of society do we live in where the suggestion you mentioned is somehow seen as a practical solution to the problem of taking care of the disabled? Dissolving family bonds as a practical solution? You don’t see what’s wrong with that on an emotional level?

30

Yes, we considered it and rejected it for several reasons:

  1. It is more difficult for the disabled to adopt than for the able-bodied. Many agencies won’t even consider it.

  2. It seemed that we would be expected to adopt “special needs” children. I guess because I’m supposed to have such vast experience with “special needs”? The message we got was that we wouldn’t be offered normal children, only the handicapped. Really, it came across that because my husband was “broken” we’d only be offered “broken” children.

  3. His family would never accept an adopted child as a true member of the family. Whether you find that attitude acceptable or not, that is how they are.

  4. Having children, in the end, really wasn’t that important to us.

31

So many more great questions!

Mr Kitty shouldn’t have been able to have kids- most CF males are sterile- but he had two from a previous marriage who were 9 and 10 when we got together. I never wanted kids, so it wasn’t a difficult decision at all to put him ‘in the shop’ for a vasectomy. :slight_smile: When we found out it was CF, one of his first significant concerns was for his kids/the grandkids; they’ve since been tested and are negative, thankfully.

Interestingly, I also have a fairly significant health issue (MS), and although the docs said I’d be in a wheelchair by the time I was 30, I still get around just fine. Yet I have been tempted to Carry A Big Stick, as it were, more for the pummeling than the distraction. :slight_smile:

It really depends on the business. One of the medical offices he goes to adjoins a hospital, and you’d think they’d have way more spaces than they do… the majority of the ‘close to the door’ spots are reserved for board/auxiliary members and pregnant women. Trying to get a cripple spot at Walmart on a Saturday is impossible. But for reasons that utterly escape both of us, Home Depot always has TONS of spots… it’s actually a running joke between us.

Sort of, yes, and hell yes.

On a near-daily basis Mr K will catch his oxygen hose on something- which is annoying and painful- or we’ll get yet another hospital bill, or something else will go wrong, and he’ll say “I hate this life.” There are days (and it’s not so far back in my mind) when I have to really focus on not snapping back “It’s no fucking cakewalk from my end either!” I think that’s a completely human reaction, and I think I’d be insane to not be frustrated and angry that my life is as screwed up as it is. I can’t cuddle with my husband because he gets overheated and starts coughing- who the hell would actually enjoy a limitation like that? I would love to quit my job, but I can’t- instead I live in constant fear that my boss’s boss will get her panties in a wad and fire me. We can’t spontaneously hop in the car and take a day trip, because he has medical equipment that he uses while he sleeps (never mind all his medication). Even short excursions can be a hassle- for his 50th birthday I took a week vacation and set up little, affordable things we could do, and one of them was to see the Terra Cotta Warrior exhibit. I’d never been to the High before, and would have loved to have spent more time there- but we had to leave shortly after finishing the exhibit because the regulator on his oxygen tank started leaking and we were about 2 hours from home.

I have a coworker whose husband has significant health issues that cropped up after they married; we commiserate a LOT about our respective situations, and whenever someone we work with gets engaged/talks about marriage, we always joke “Take them for a physical first! Make sure you read the fine print!” Some days its more a ‘joke’ than others.

No; mostly because he doesn’t let them. :slight_smile: They do tend to steer clear of him when he goes into a coughing fit, especially in an elevator.

Heh. About a year or two after we got married, he broke several ribs during a coughing fit. They’ll never heal, and every now and then they shift out of place. Sex is… interesting when you can hear your partner’s insides moving about. ::shudder:: :smiley:

32

Oh, yeah - definitely some positions are out for us, either because we can’t physically get into them, or because they cause problems.

33

:eek: Never heal? Why not? I wasn’t aware that CF affected the body’s ability to heal. And I’ve always heard that broken ribs are incredibly painful. That must be terrible for him.

34

Oh, I agree. But for many people it’s the difference between surviving and not, so sometimes tough solutions need to be suggested.

35

I still find it absolutely horrific and morally disgusting that we live in a supposedly civilized country where that tactic even occurs to anyone as a solution to a problem that shouldn’t exist in the first place. I know of no other industrialized nation where that is ever necessary for a disabled person to access care and assistance. It is a reprehensible blot on the US.

36

They blew out in such a way that the connections were completely destroyed- IIRC, the first time impacted the spot where the ribs connect to the sternum on the left side, and the second time tore the ligaments in the back on his right side, so several of his ribs ‘float’ on both sides. He has to sort of wrap his arms around himself when he goes into a coughing fit to keep them in place. And yeah, huge amounts of pain… and corresponding painkillers.

Will make the inevitable opening of the chest to replace the lungs much easier, though. :wink:

37

Can you tell me more about the lung transplant? I’ve read that it’s one (extreme) method of treatment for CF. What factors go into your decision and the doctor’s about whether or not, and when, your husband should have a lung transplant? Will it likely be an improvement or deterioration in your husbands quality of life?

38

It is a pretty extreme treatment method, especially taking into account that average life span after a double lung (they have to do both) transplant is 5 years. But considering the average age of survival is 32, it’s a decent tradeoff.

A lot of the factors are the same for any other transplant- overall health, financial resources, support system, compatibility, patient compliance. They usually wait until you’re about two years from certain death (as certain as such things are); Mr Kitty’s about six months into that particular pronouncement. His docs had been dragging their feet about putting him before the board for review because of our financial situation- they had genuine concerns that we would be rejected out of hand because we can’t afford the maintenance medications. But when his most recent hospital stay didn’t give the results they wanted (in fact, he got worse), they agreed that it was time. We’re still waiting on the decision… I don’t envy those folks at all- imagine what it’s like having to first decide if someone gets on the list, then where on the list they go, then whether they move up/down the list as more people are added… ick.

Our choice was easy- if that’s what will give him quality of life, and he’s a good candidate, then we’ll do it. He’s actually lucky for a CFer- he doesn’t have a lot of the other major complications, and those he does have are manageable. Every now and then I feel… weird about it. I’m a big supporter of organ donation, but I can’t help circling back to “You know, I have to actually hope someone dies in order for Mr K to live…” I’ve been telling my coworkers that I really hope it’s some orphaned, friendless college kid who dies doing something unbelievably stupid like shooting bottle rockets out his ass, and not some single mom of 4 kids working three jobs and going to school who gets hit by a drunk driver (not that they actually tell you, but still…).

As far as improvement vs. deterioration- well, to be perfectly honest he physically can’t last much longer in the state he’s in. So it will likely be an improvement in that it stops the rapid downhill slide. But I think he’s not being completely honest with himself about how much of a huge lifestyle change it is once he’s on the waiting list and for the first year or so after. While you’re waiting, you have to remain within a certain distance of the hospital, so no traveling at all. You have to be ultra-aware of people around you and whether they’re sick, and most transplant teams insist the patient wear a mask every time they go out. He’s looking at a minimum of two to six months in the hospital after the transplant itself. So if he thinks it’s frustrating to be ‘tied’ to an oxygen tank or stuck in the hospital for a week or two, I dread what it’s going to be like down the road.

Interestingly, there’s research indicating that marijuana (eaten or used in a vaporizer, not smoked!) is quite helpful to CF patients, because it breaks up the mucous and helps them cough it out; it also stimulates the appetite and decreases pain from constant coughing. Mr K grew up in the 70s and claims to have first-hand knowledge of its benefits. :wink: He’s been a big proponent of passing a medical marijuana bill here, and hopes that (should it pass) it might keep him around long enough to get the transplant.

39

Thanks for that info, bobkitty. And really, is there any physical ailment that medical marijuana doesn’t help? :slight_smile:

40

Considering it makes people hungry, I’d like anybody who has it to keep it away from my mother. Pretty much every single one of her multiple illnesses / conditions /whatever would get better if the woman ate half as much as she does :stuck_out_tongue: