17 replies to this topic

[Saneaj]

I'm really needing some advice from the male population here on this forum. Most of you already know that my hubby is bedridden. With that being said... this is what has happened.... he is having a really hard time these past few days dealing with guilt. He told me that he is feeling really guilty right now because he sees me doing even more than what I had already been doing before the whole bed thing. He is really beating himself up and nothing I seem to say seems to help him. He just keeps telling me that he lays there watching me take care of him, the house, our company and our clients, and so forth and so on... while all he does is just lay there. I can tell that this is really eating him up. I keep trying to cheer him up and all but it doesn't work. He's not to the point where I see him totally dwelling on it but I also don't want it to come to that point either. He's NEVER been one to get depressed. Is this depression that is starting to get to him or is this just a man thing because he can't do anything right now? And PLEASE tell me what I should say to him... I don't want to trample on his ego and stuff... help...

And I don't know what he has to feel guilty about... it wasn't his fault that the spider bit him. And it wasn't his fault that any of this other stuff has taken place either... I'm at a loss...

Edited by Saneaj, 01 January 2010 - 10:48 PM.

[Tetracyclone]

This is too stupidly simple, but is there some intellectual work that he can do? Phone calls? I did most of my calculations for my tax forms in ICU. I Even remembered them when there was opportunity to enter them in the computer, though it took me 3 tries before I could begin to remember my way around Turbo Tax.

Yes, it sounds like guy depression. When I feel that way it is gal depression. We whine with slightly different tones.

Edited by Pwuff, 01 January 2010 - 11:40 PM.

[Wheelsonfire]

Although I am a para, I can still give advice, whether a para or a quad, we all get our good days and bad. I agree with Pwuff, so much can be achieved even stuck to a bed, it's a hurdle that needs to be jumped, tough love always worked for me, cruel to be kind. I found a kick in the ass worked far better than someone telling me what I wanted to hear at the time.
The male ego is a sensitive area to be tackling, to get this issue resolved, discuss the issue, lay all the cards on the table as to how both of ye feel and find a resolution, list what needs to be done and have your husband give input as to where he can be supportive.

[Saneaj]

Pwuff... that's what we've already done. He can't handle the phone calls because he doesn't know that tech lingo. I offered to teach him... but he said that it was just not his cup of joe...His job was editing footage for our church's tv program. We've tried every which way for him to be able to use the computers from bed, but due to his positioning, it's just impossible. We've sat down and thought of everything else that he could possibly do... all to no avail. But we really did make a try of it once he became stable enough to even think about stuff like that. But thanks for the try...

Wheelsonfire...we've also done that too. We layed everything out in black and white. One thing about our relationship is that we don't sugar coat things... we tell each other straight and like it is... that's just how our personalities work. And yeah...lol... I do give him a good kick in the booty from time to time. We have this quirkly type of relationship where instead of letting things fester to a point where we blow up at each other... we sort of pick at each other in a cute sort of way. And it works for us. I'm not the type of person to baby someone either... so that has always helped. Men always talk about us women and our mood swings... but dang... you men and your male egos...lol This is hard! Especially when you have tried to come up with different ways of solving this... but hit a stupid brick wall due to one issue or another... ya know...

[Tetracyclone]

You are NOT responsible for his ego. Old bit of female arrogance, that.
Screens and keyboards can be suspended from the ceiling if you can pay someone to do it, but perhaps you expect him to be up soon. Good luck. His job right now should be to be cheerful so you can get stuff done. Pick away!!!!!!!!!!!!

[Saneaj]

That's fuuunnnnyyyy!!!!

It's not the positioning of the keyboard... it's the positioning of him so that he is able to manipulate the keyboard. It's really hard to describe... he had shoulder surgery not to long ago so that hinders certain movements now when in bed. I'd hang the whole complete system over our heads if I thought that it would help...lol Trust me... I've done worse...lol

He's still pretty cheerful and is still keeping me in line. It's just moments that he's having. I just don't want it to start turning yucky for us... that's all. I'm one that believes in preventative maintenance... I know.. I'm anal...lol

Just that he's never really had moments like this in the past few years. And no... we don't expect him to be up any time soon. They are telling us that IF he is ever able to get back up again (he has a lot of health issues right now) that we are looking at least 6 months to a year of him being in this bed.

At least we have cable...lol

[gordonr]

**Darndest thing!**

**Someone asks directly for male input, and the only people who step up are females.**

**Guess I better try to help out.**

Dear Sheri,

Let's leave the male ego for last. There are lots of easier things laying about on the surface. I have reviewed your posts today, and over the last while, we have seen everything from you. And I mean everything.

I do not credit this to "mood swings". You have been through a set of very challenging circumstances, and just when it looked like things were hardenning into a pattern and an outcome, whoops, all bets were off. Luckily, it appears that things have now taken a turn for the better.

Thus you would not now write your "I really love him but I am a realist and I just want this to be over" post. Nor, hopefully, would you write your "walking out to the edge of the ledge" post.

On the other hand, you might wish to re-edit your "stand by my man to the last breath in my body", post.

But one way or the other, you have been through an emotional rollercoaster. And (and I am coming to the point here...) so has he.

You see, this guy thought he was dying, just like YOU thought he was dying. And he must surely have been aware that people were waiting for him to get on with it. These are just facts. And he will now require a little reassurance from your side that you really are happy that he has succeeded in changing the script.

And all of the other practical things we have discussed still remain in the air:

WOULD it be better if he were in a full time care facility with you as a visitor rather than a caregiver?

How WILL you react when sudden crisis number two materializes? And what IS your ultimate plan for dealing with these emergencies?

All of that is on the table. You do have to discuss it. But it has nothing to do with kicking anybody in the butt. The guy has just survived a near-death experience, and he has only a moderate chance of extending his winning streak beyond a horizon measured in months.

Frankly, what DO you expect a man in that postion to do? To want to do? To be willing to do? And why?

Perhaps he deserves to be cut just a little bit of slack and the chance to work on his philosophical and spiritual side in the short span of months or years that remain to him? or at the very least for a month or two while he mulls over the fact that he is not (perhaps) going to die right now?

What does he really need now? Well in my opinion, it is simple: He needs to be cleaned, to be fed, to be turned, perhaps to be read to, and he needs to feel, really feel, that he is accepted for what he is, that he is not a burden to anybody, and that nobody is waiting for him to die.

And now for the male ego. It is an evolutionary fact known to men, that women value us for what we can do. We also know that when we can do less, women value us less. This is not a cute little mental foible, it is an observable fact. In the animal world of human evolution, this is how things work.

Now, it turns out that you clearly aspire to something better than that animal world. In particular, you aspire to a life in which you can value your partner not only for what he does, but for what he is, a human intelligence and spirit.

Therefore, this, right now is the proof of the pudding. Can you, really, right now, get off his case without abandonning him? That is (forget his ego), are you as a woman capable of just being with him, and permitting him to survive, even if he can't do ANYTHING from a practical point of view? Can you do it without mentally torturing him for it?

(At your place or in a home is irrellevant. Choose whichever is more convenient.)


I'm betting you can. And I also am betting, that if you can get over his failure to play his male role, so also can he. In the end, it is just a case of affection and respect.


If anybody can do it, I think you two can.

And please don't let me down. I am looking for examples to show it can be possible when my own time comes.

Best,

Gordon

Edited by gordonr, 02 January 2010 - 04:48 AM.

[Wheelsonfire]

Many thanks Gordon for the sex change, finally I have a reason not to get up in the morning!!

[Saneaj]

Gordon,

I don't know what to say or how to respond. I'm not exactly sure how to take your post. I'm truly at a loss right now. Very confused.

What I can say is this... we are still facing his death, it's just not as soon as what we thought. And the post where I said I was just wanting this to be over was due to me watching him lay there in utter agony. I didn't want to see him live like that and I couldn't live like that either. So I don't know how to defend myself in all of this. Maybe there isn't any defense for someone like me... so all I can do is just say sorry...

I'm very tired today, so maybe that has a lot to do with it. Mix that with the fact that all the company we have seen for the past two weeks are just the nurses. So maybe I'm just not thinking clearly today. Who knows.

Last night my hubby and I had a talk. Physically things are getting easier on my chest because I don't have to quad cough him all the time now and such. So that is a good thing. I told him that I really need him to watch over me. I keep gettting flustered and can't remember everything that I need to do. Like... did I feed the dog... Did I render that one project out... etc... His bed is positioned to where he can see almost everything that goes on here in the house. So it is now his job to focus on me and what I need to keep up with. Sort of like my supervisor. He's really good at it because he doesn't come across as demanding or barking orders at me. So this is helping.

And yes... I can always love him for whom he is... my man. Even if he is no longer able to supervise or even talk... I will still love him and love on him. I don't see him as anything else. He's just simply my hubby... and I truly try to make sure... I mean ALWAYs make sure that he never feels that he is a burden on me. That is something that I work on constantly. Other than that... I don't know how to respond to your post. Just that I'm going to scale it all back and thanks to learning how I screwed up with Stef... never EVER share any of my stories here ever again... the LAST thing that I EVER want to do is cause someone more pain than what they are already dealing with... And if you could please be more specific on the one post you want me to go in and edit... I will try to get that resolved as well... Maybe I just don't understand how all of this forum stuff is supposed to work. And just need to obstain for a bit until I can fully understand this... thanks...

[gordonr]

Wheelsonfire, on Jan 2 2010, 02:24 PM, said:

Many thanks Gordon for the sex change, finally I have a reason not to get up in the morning!!

Whoops!

*sheepish grin*

Sorry about that, Buddy.

-G

[gordonr]

Sheri,

I don't think you have anything to apologize for. On the contrary, your shared experience has been very enlightenning for me.

My point about your changing posts was to show how much and how varied the circumstances were through which you have been passing.

I have no doubt about your commitment. What I think you have shown us is a totally committed couple, and how even that totally committed couple, faced with a certain level of adversity, can be overwhelmed. Luckily, in this case it was temporary and you quickly recovered.

Here are the facts as i see them:

You have shown through eighteen years that you are capable of caring for a healthy quad.

And now, with your work from home organization, you are showing yourself able to care for a bed-confined quad.

Where the problem came, was with the twenty-four hour respiratory care. Frankly, I don't see how any one person can handle a thing like that. And if that had gone on even a little longer, you would definitely have had to hand your hubby off to some other care.

Of course the problem was, there WAS no other care. And at that point you started exploring options.

I am not going to labor the point, because I think I have said as much as I can. But I think you should look ahead, now that you have a temporary respite to do so, and figure out how you are going to meet the next crisis.

If it takes a divorce. Why not? It would make no difference to either of you.

And then, next time he gets admitted to hospital, if they want to discharge him while he still needs twenty-four hour care, then you should just tell them YOU cannot take that responsibility.

There is no shame in any of this. Get him in a place where you can both be calm . Figure out how to present your living circumstances in the light that will bring him the most benefits.

I am making things up here off the top of my head, but how about you divorce. he sells you his half of the house on an IOU. You take him as a renter. He gets some home visits.

Or just go straight to the home.

Or just go with the next crisis.

Whatever you decide, all the people here have taken your life very much to heart. We are all on your side.

Best

-G

[Wheelsonfire]

No worries dude.....lol

Enjoy and have a good one.

John

[Saneaj]

Gordon...

Oh... Now I understand... Did I also mention that I tend to be blonde from time to time...lol

Sometimes I don't really understand people because either I'm very tired or just so used to having to defend why I stay with my hubbypooh with family... ya know... so I tend to get a little defensive and tend to pull back at times... that's why I have never really shared my stories with anyone over the years but just now and just in here...

Thanks for clarifying and for truly understanding my heart in all of this...

Sheri

[Saneaj]

Good news... which much configuring, twisting, turning, etc...lol We were able to get my laptop (Alice) into bed with him. He can't manipulate everything... and he won't be able to edit footage... but... he can play Mafia Wars off his and my facebook accounts. YAY!!!! He can't play Dark Orbit... so saving the universe will just have to wait for now... but Mafia Wars will do just fine.... soooo relieved...

Thanks for everyones thoughts...

[Wheelsonfire]

But that does not resolve the issue of you doing everything!
Was he just bored?

[Saneaj]

No... it doesn't... but I'm realllly hoping that it will get his mind off it... Maybe he will get so involved in it that he will forget... or maybe I'm just wishful thinking... I dunno... Just plucking at straws right now, ya know... He usually takes his computer games very seriously. So I'm hoping that this will help in some way to divert his attentions to it and off me... or does that just sound stupid...I dunno

[Wheelsonfire]

Nope...sounds logical...main thing is to keep him busy, nothing worse than an idle mind

[Saneaj]

Well... it was a disaster! He was able to partially use my laptop like I had stated earlier... but here's what happened...

They way he had to manipulate his arms and all, well... it caused him to rock back and forth from side to side. Not much, but evidentally enough to do damage. We didn't really catch it or think anything of it. I REALLLY should've thought this thru better. The extra side to side movement sort of caused a shearing effect on his one sore. It was a MESS!!! I just couldn't believe that something like that would cause damage to him. That one stinkin sore is in such a stupid place! Every extra movement that he seems to have causes more damage. This really SUCKS!!! But he did appreciate the efforts....