10 replies to this topic

[mcwriter]

My husband's new chair has finally arrived. He has a scooter which is a pain actually, not very convenient or dependable, so awhile back I had made the suggestion to get a manual chair, easier to toss in a vehicle, plus it wouldn't matter which vehicle, unlike the scooter that is pretty much tied to using one vehicle. Besides, he is getting much worse when trying to use his cane.

Anyway, I have a couple of questions to start out with (I'm sure I'll have more):

It did not occur to me until after we got this new one that we have a handicap license plate for the van because that was the primary vehicle for transporting him, but I don't have anything for the other vehicles. I don't think it should matter since he doesn't drive anymore anyway, but I wonder if you can get a spare hang-in-the-window kind in the US or are we just stuck with just the plate?

Secondly, this was suppose to be sort of an incentive for him to get out and do more things with me and it is not happening yet. Maybe I am going about it all wrong, I'm not sure, this is kind of new to do things this way. It's no big deal to me to get it in and out of the vehicle and he does fine getting in and out of the chair himself, but then he wants me to push it too, when he could do that just fine as well. I am thinking that he should not be expecting me to do this all of the sudden. He never does that with the scooter, but he will put a hand on my shoulder when he has his cane.
Any ideas why he would suddenly want this?

[edlee]

Actually Hon,, I do. You have been babying him for quite a while, now. He is a hell of a lot more capable of doing for himself than he has been forced to prove to himself or to you. I've read your posts and your "about me" a few times now,,, Just to see if I could pick out some reason for this,,, but I couldn't.

I have met quite a few paras and quads,, in my dealings with the VA,, the paralyzed Veterans Of America, and the local Wounded Warriors,,, and one trait seems to stand out in all of them,,, and that was their extreme desire to show their independence. Sometimes to the point of doing themselves,,, ourselves,,, harm. I don't intend to compare injury or extent of pain,, cause I'm not in his shoes,,,, but I can't help but wonder why he is so different from all those I have met.

I have been having a debate with myself, for quite some time, about whether to say anything about this issue. I have have held my "tongue" till now,, but from what you say, he's getting worse. Perhaps if you raise YOUR expectations of what he should be doing,,, he will too.

I hope you don't find this insulting,,, because it certainly wasn't meant to be.
ed

[mcwriter]

Oh gosh, I am not insulted at all. I think you are right. Knowing his personality traits and what in his life that made them what they are, I find that it is a very tricky thing to get around his emotional neediness. So far I have caught myself starting to push him and then I've stepped back and refused.

At the same time I am waiting to see what kind of adjustments his body is going to make to the chair. Even with the nicer tires, every bump is like shards of glass, it is the same with riding in the car. It all depends on how much he is willing to force himself to endure, really. Then there are the after effects...because everything he does different from the norm has effects for days afterwards and this usually runs for a good three days before he is back to normal.

Anyway, you read it right. I also have other issues with him in his deteriorating condition, and one is an old head injury that I see manifesting here and there, edlee, and if you know anything about those, you might know that it's hard to tell sometimes unless you are really paying close attention, other times his memory just completely stinks and you don't realize it until after the fact or sometimes he gets that sort of a terror about being lost thing. So it makes it hard to back off too far when I need to be sure what is going on with him.

Alas, I will take your advice and see what more I can keep prompting him to do on his own.

Thanks, I do appreciate you input on this, edlee.

[goose]

I can't imagine anyone at his level wanting to be pushed. I would think he would enjoy the freedom of going where he wants.

Maybe if you push him only to places you want to go...shoe dept., makeup,etc. then he'd get bored and push himself.

[mcwriter]

goose, on 22 December 2011 - 03:03 AM, said:

I can't imagine anyone at his level wanting to be pushed. I would think he would enjoy the freedom of going where he wants.

Maybe if you push him only to places you want to go...shoe dept., makeup,etc. then he'd get bored and push himself.

Yeah, I thought it was weird too. I wondered if it was just because it's a new thing for him or something.
He used to try to hobble with his cane but he can hardly get from the from his bed to the car which is not far at all, then he is wiped out and hurting too much so that has made for very few, very short trips out. I didn't expect this at all.

[wheeliebear75]

I do admit to being pushed at times thanks to my lousy eyesight such as; crowds, if we're in a store that IF I were to bump into something it would cause something to break. And I do get pushed quite a bit when it's really cold and/or raining, which is because I have osteoarthritis from C2-L5/S1 that flares up then.

But given a 1/2 decent day & some open space & LEMME GO! My "ride" is a Quickie XTR with "frog legs" & a ROHO Quattro. Those take most of the "glass shards" out of my saddle area, I also use the T.E.N.S. unit also helps (just make DAMN SURE those wires are tucked SECURELY UNDER clothes).

I'm not saying anything about your hubby....JUST MY situation.

[moses gichuki]

ONE THING I BELIEVE IS THAT A HELPER SHOULD NORMALLY DO ONLY WHAT I CANT DO FOR MY SELF

[isobar]

I believe others have hit on a very key point here .......... your hubby is probably use to being catered to. But i'm not in his shoes so there could be times when he just wants or doesn't feel up to the task. It's easy to let others do things if we allow ourselves to fall into dependency mode. I have a friend who is married he admits he got lazy and started relying on his wife to do things he use to do himself. Whenever i visit him her name is called a lot ......... i say to myself he could have done that but dutifully she responds and i can hear she's tired in her voice.


Love's a funny thing it can make or help us weaken or strengthen each other we have too really watch how we apply it.

Edited by isobar, 22 December 2011 - 03:11 PM.

[mcwriter]

goose, on 22 December 2011 - 03:03 AM, said:

I can't imagine anyone at his level wanting to be pushed. I would think he would enjoy the freedom of going where he wants.

Maybe if you push him only to places you want to go...shoe dept., makeup,etc. then he'd get bored and push himself.

His level isn't quite what it seems. It is the result of bad surgery and some related things, not to mention other health issues. Even after this long we are figuring out that more things happening to him are results of the damage and he continues to deteriorate. That is one reason why this site is so helpful.

Anyway there is a big issue with intense and constant pain that is exacerbated with movement and especially bending at the waist. He can only sit upright for relatively short periods. If he goes longer you can add days to recover and get back to his "normal", so most of the time he is in bed, in a reclining position. He walks, but not well and not far, his knees will give out at random. He does try hard to exercise, and his arms are just peachy.

As for the pushing himself thing, I'm making it a point to not give in, unless he gets stuck or something.

[mcwriter]

isobar, on 22 December 2011 - 02:50 PM, said:

I believe others have hit on a very key point here .......... your hubby is probably use to being catered to. But i'm not in his shoes so there could be times when he just wants or doesn't feel up to the task. It's easy to let others do things if we allow ourselves to fall into dependency mode. I have a friend who is married he admits he got lazy and started relying on his wife to do things he use to do himself. Whenever i visit him her name is called a lot ......... i say to myself he could have done that but dutifully she responds and i can hear she's tired in her voice.


Love's a funny thing it can make or help us weaken or strengthen each other we have too really watch how we apply it.

It's true, he does get in that mode and I have to come out and set him straight periodically. He won't realize it unless I say something and it goes for awhile. On my part, sometimes it is just easier sometimes. I am so used to doing everything that when he wants to help, I see it as either more work to help him, plus knowing how much and how long he will be suffering from the effort afterwards that it doesn't feel worth all the chaos.

So yeah, I've let him get away with more than I should have for many years. At the same time, he has so many health issues going on all the time that I have to really keep an eye on things because he won't remember or see the patterns we need to pay attention to so they can be medically addressed.

I just wondered if this was a weird thing or not. There are so many.

[edlee]

I think that the question most of us were addressing wasn't what he could or couldn't do,,, but how much he WANTED to do. It seems from the conversation, that the second is what is realy deteriorating with time.

For most of us,, pain IS. It seems to be a given. The reality is that that part isn't going to get any better,,, though he should go through the pain clinic route, just in case. I am now , still, making a concerted effort to use meditation in place of medication,,, and it works to some extent. It allows me to keep driving a vehicle,, which one really shouldn't do when taking pontent pain killers. Though it does cause be considerably, each time I go,, I refuse to give it up. That's what I mean when I talk about the tremendous desire for independence I have seen to be virtually universal among the disabled.

If you want it bad enough,, you do what you must ,, and endure what you must,,,,,,, or you let someone do it for you,, if you have someone who will.
ed