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Wife Of Paraplegic Needs Advice And Support


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#1 devotedwife

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Posted 05 May 2009 - 11:33 PM

Hi everyone, I haven't posted in a long time. This time, I really need help and you guys are the only ones that might understand.

First of all, I want to say, I am married to thewonderful man. I love my husband very much. He was hurt almost 3 years ago and he is now a T-8/T9 Paraplegic. The past year he has been very sick, going through withdrawls from Oxycontin and many UTI's. He has been hospitalized at leat 5 or 6 times last year, not counting the other trips to the ER.

He is going through an extreme amount of anxiety and depression (although he will not admit the depression) He wakes up several times through the nights every night drenched in sweat and nauseated or vomits. He has lost 80 pounds in a year. He barely eats! He has no appetite.

We have seen so many doctors in a year and tried to get help. Noone can seem to help. He has stopped using the VA, except for supplies.

In addition, he wakes up in the middle of the night with very bad spasms. He has even screamed and told me wanted his legs amputated.

Then we get to the part of my relationship with my husband. I know my husband loves and I love him. He tells me all the time. But, lately he hasn't been treating me very well. I know that it is the anxiety and depression that causes this, but it is so hard. He yells at me a lot. He always apologizes. Lately he has threatened to leave me, said that he wants to leave so I will be happy. I have never told me that I am unhappy. I can't imagine myself without him. He always says that I don't deserve to be treated the way he treats me and that I should be with someone that treats me better. Most of the time, he treats me great, but when he is in one of his moods. He is so sweet and so loving.

Today, we went to a doctors appointment for him and he got so upset with me, that when I got out of the car to get his chair. He drove off and left me in the parking lot. He came back, and we talked but he was still upset and told me he was leaving me again. But, then he cooled off and apologized. He told me part of him wants me to leave him. I told him that it will NOT be my decision to end our marriage. If he no longer wants to be married to me, he will have to make that decision. I will never leave him, I love him way too much.

I don't want to portray my husband as a bad guy. He is really wonderful and I have never loved someone so much!

I just need to know if anyone has had this experience whether themselves or someone they love, please share their experience. I need support and someone to talk to. My family doesn't understand, and neither do any of my friends. Please any advice is welcome. Even, if it is telling me that you have had a similar experience in any of the things I have stated above. Thank you so much for your help in advance

#2 nomis

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Posted 06 May 2009 - 10:58 PM

It's outside my experience, but it sounds like your husband is seriously depressed. From what you say his wanting you to leave sounds like his own self-loathing and that he doesn't deserve you. I'm puzzled by the apparent inaction from the doctor. Is he/she getting the full facts?
"It's the notion that there is no perfection ~ that this is a broken world and we live with broken hearts and broken lives but still that is no alibi for anything. On the contrary, you have to stand up and say hallelujah under those circumstances. " - Leonard Cohen

#3 devotedwife

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Posted 06 May 2009 - 11:21 PM

View Postnomis, on May 6 2009, 03:58 PM, said:

It's outside my experience, but it sounds like your husband is seriously depressed. From what you say his wanting you to leave sounds like his own self-loathing and that he doesn't deserve you. I'm puzzled by the apparent inaction from the doctor. Is he/she getting the full facts?


Yes, we tell him everything. He has so many doctors. We don't just use the VA, we have other insurance, so we go all over the place to different doctors.

#4 wheeliebear75

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Posted 07 May 2009 - 01:35 AM

Well I know that just not feeling good physically can make a person quite depressed & it has happened to quite a few of us. And when we're in severe pain (you mentioned he has woken up screaming that he wanted his legs amputated) that can also put us in a sour disposition. However that is no excuse for treating you like crap. You're very understanding & forgiving to put up with his emotional roller coaster.........with many women he would have pushed them away by now. But that would only serve to further his low self image. I know you said that you have many Dr.s, but one of them has to be able to do something. The VA does have councilors for their patients to see & I think he would be helped tremendously by a team of psych & pain management specialist. The psych docs obviously we know what they do. But aside from writing prescriptions for heavy duty drugs pain management docs also deal with the depression that can come from chronic pain as well as those who have a legitimate physical pain but have become dependent on the meds., along with weight-loss which it sounds like is also an issue your hubby is dealing with. Loss of sleep from pain, loosing weight from lack of appetite, irritability, trying to push loved-one's away........these are all symptoms of what could become an ugly monster if he isn't forced to do something about it.

I wish I could give you an easy answer........but this is a very complicated problem & you both need help to get through it.

Best of luck. :hug:
*Enjoy every sunset, but be grateful for every dawn.*
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#5 musical-poet

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Posted 08 May 2009 - 08:32 AM

i'm engaged with my injury and i like your husband give my lady too much grief to say.
I don't wish to hurt her but do at times, well most of the time, give her some of the most unpleasant interactions imaginable.

I often hate what she does, probably a way of defending my self against if we split.
It's easier to accept an end if you turn everything into a battle. That way you feel like it's the war you leave behind not the love.

Being in a state of similar throws i can't tell you any ways to get around it, i can only assure you that you are not alone in the experiance.
Best is to get help for him on the psychology side. The rest is time i suppose.

It helps me and then maybe you guys that we're not alone.
chef was and is my name!

#6 hooplady

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Posted 09 May 2009 - 05:30 PM

I will give you my two cents but I suspect you won't like it much.

It sounds like you two are trapped in a classic abuser/victim situation. The fact that he abuses you and then makes up for it by apologizing after the fact and telling you that he loves you does not give him a pass to abuse you again. Unless, of course, you keep allowing him to.

He is obviously in severe pain both physically and mentally and needs to seek treatment for his anxiety and depression. However, you can't force him to take care of himself - that's his job, not yours. Your first job is to take care of yourself, and assist him if he wants your help. Are you yourself getting some help via therapy?

Ask yourself - if a friend of yours came to you and described the same pattern of behavior from a spouse who was, say, an alcoholic, what would you tell her to do? Keep forgiving him and let the behavior continue?

You say that you will never leave him because you love him too much. If this is true, then you are saying that you accept him fully for whatever he is and whatever he does to you. If this true then why are you expecting him to change? Is this really what you want in your life?

You need to make it clear to him that you love him but that his bevavior towards you is not acceptable. I suspect that his threats to leave you are his way of gaining some type of control in his life - clearly there are so many things that he cannot control he is grasping at straws. The next time he tells you that you deserve better, maybe you should agree with him...because it's true. Make it clear to him that you do deserve someone who respects you and you would really like that person to continue to be him. But you can't prevent him from leaving you he if that's what he wants to do. You can help and encourage him to get the medical and psychological help he needs, but to continue to accept these threats from him is making you an enabler.

Or you can just make sure you always have cab fare for the next time he drives off and leaves you.

I told you you wouldn't like my advice. And, yes, I do speak from experience, unfortunately. Be strong and good luck...if you do truly love each other this is not insurmountable but you each need to work at breaking out of these awful patterns you have fallen into.

#7 Quad65

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Posted 10 May 2009 - 03:44 PM

You mentioned you go to many doctors. I suggest that you find a primary doctor, one familiar with SCIs, and have him be the lead doctor supervising his rehab and recovery. A team approach, as it were. It sounds like none of the doctors is getting a complete picture of what is going on with your husband, physically or emotionally, and this is not good for either of you. I agree with others who feel your husband is suffering major depression. Couples counseling would be beneficial. There is a great deal of displaced anger and aggression going on and it needs to be addressed professionally. There is no shame in doing so. If he is a Vet, as you stated, there should be resources available through the VA. If it is inadequate, go through your private insurance. Do it ASAP. The situation as a whole will not resolve itself. I hope for the best for both of you.
-- Whatever doesn't kill you, makes you want to get even real bad.

#8 gordonr

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Posted 10 May 2009 - 07:28 PM

He was hurt almost 3 years ago and he is now a T-8/T9 Paraplegic. The past year he has been very sick, going through withdrawls from Oxycontin and many UTI's. He has been hospitalized at leat 5 or 6 times last year, not counting the other trips to the ER.
**********

Dear Devoted,

I notice that this guy is only three years in. Naturally three years feels like twenty but it is not usually enough to turn the corner on such a catastrophic injury.

It is important for him to at least suspect what the future may have to hold. A stable para is not an addict, or constantly infected, or in and out of emergency and actually hospitalized multiple times each year. A stable para is not totally selfabsorbed, frozen in time, obssessed with his injury, and investing exclusively in one relationship because he is convinced that nobody else could ever understand him as he is.

By way of contrast, many fresh injuries are addicts of one kind or another, do not take care of themselves properly because they are ignorant of the risks or because they have a live for today what the hell attitude towards longterm health, and in particular, those who are lucky enough to have good partners when the injury occurs, will have both the benefits of an extraordinarily intimate relationship (as will the partner I might add) and will likely live through some very rough patches as well, resulting from completely irrational demands upon the unlimited comprehension of that partner.

But the main point here, is physical health. Paraplegia has psychological dimensions, of course. But paraplegia is not a psychological condition. Let`s start with the urninary infections. When I was a young para, the doctor told me that twenty percent of us will die of these. And believe it or not, there are ways to minimize that risk. And the main way is to keep your bladder empty, and to be drinking all the time (alcohol does not count as drinking it has to be water). So OK, the more you drink, the more trouble it is to void. And if you are not catheterized, this is work, pushing on your bladder and learning how to get it to function properly. And, if you happen to be drunk and/or stoned (enjoying a place were none of this matters), your bladder will be getting too full before it voids, you will have more infected urine and that infected urine will be backing up towards the kidney. From time to time, things will get out of hand. In the end, rest assured, it will kill you.

A stable para can have permanently infected urine, but it doesn't matter, and he will not even have to take antibiotics, because he is moving enough water to keep the count down, and he is not letting the the bladder blow up and threaten his kidney with reflux. In other words, the stable para is not drunk and stoned, forgetting about it until tommorrow. The stable para is drinking juice and voiding his bladder now, and he will not be developing resistance to the drugs he will need to save his life when the kidney does need help.

Next is skin sores. Skin sores are not just sores. They are the number two killer of paras after the urinary thing. You did not mention these, but with the profile you depict, I would not be surprised to hear he has skin issues as well. And this is the same as the urinary. IF you lift yourself up for thirtyseconds every twenty minutes. If you turn over in bed every four hours. If you get out of your chair to lie down for ten minutes every three or four hours (I always lie down on the floor of my van between driving and chairing and when I enter or leave the the house I always lie down for ten) then you will never have any pressure sores. If on the other hand, you are drunk and/or stoned, you will sit in your chair for hours and hours without any lifting or position change, let alone a lie down break, and you will basically pass out for six or eight or ten hours lying one side. The sores will come. The sores will get worse. The sores will take control of your life, and in the end, the sores will kill you.

But a stable para does not have that to worry about.

And what is the key to transforming the anguished soul of the fresh para into the normal experience of the stable para? Number one is to kick the substances. And then to pay attention to doing all of the things you need to do to stay healthy, as in rest food and exercise along with the elements of special care we need as paras. And under these circumstances, you will be fine, and you will think rationally (a healthy mind in a healthy body).

But first and formost, you have to want to survive. That is the three year or four year or five year crisis. Your body has exhausted its ability to simply absorb abuse and neglect, and serious signs of physical breakdown begin to emerge. At this point the adventure of being a para, of knowing what it is to survive and value life, or the unbeleivable intimacy possible with a loved one under unusual stress, all of these things begin to pale and you must look at life from a more normal longterm, less exalted, merely ordinary aspect. If you don't decide to live in this longterm sense, you will die, as about twenty percent of us do, in the first five years. Not because that is the effect of the injury, but because you do not turn the corner on it in your heart and mind.

Now relationship.

Some people go on with the pre-injury relationship. But many do not. Many partners cannot handle it. Many paras stay with their partner because they do not believe that anybody else would have them. Some paras become unfaithful to their partners as a part of proving to themselves that somebody else (meaning the whole normal world CAN accept them).

So you have two hurdles. Number one, your partner has to decide to live. And number two, this incredible relation of us alone in the whole world has to normalize itself into one containing two adults.

Can it be done?

Of course. I was as bad as you describe. Perhaps worse. I am now thirty years down the line. Father of four (adopted). Normal adult responsabilites. But I went through more than one relationship. And I had to stop the substances.

Look on the bright side. You will do your best. If your mate succeeds in doing that which he alone must do, then perhaps you will have a long and prosperous life together. If on the other hand, his rehab requires a seperation to prove his independence, or if God forbid, like so many of us he must die, then you will have had the benefit of experiencing something truly special which will make you a much more matue and deep person. And that will enable you to make your own rehab and emerge in some future wonderful life. In other words, this way or the other way, through injury, handicap, loss of loved ones, or failed mariiages, life remains to be lived by those prepared to live it.

And that fact is the same for us all. Individually and together.



Best Regards,

Gordon

#9 gordonr

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Posted 12 May 2009 - 03:32 AM

It strikes me that the preceding post, no matter how correct, appears terribly dry and heartless when held up beside the real drama of life. I apologize for that.

Gordon

#10 buff

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Posted 12 July 2009 - 04:42 PM

i find it funny that i always ask my bf if he is in a "mood" which upsets him. but so many of us spouses and caregivers use the term "mood" for them. also i posted a question a few days ago called frustrated you may want to look at the feedback. mine is no where near as sever but when my bf gets mad at me i think he is just getting frustrated with himself. try not reacting to him when he tells you to leave just continue on what your doing and totally ignore it. maybe he will stop. reacting is prob helping to give him doubt. even though you tell him you won't leave him, you two are debating so to say so just ignore it. when my bf got upset with me the other night (while i was trying to help him) i just told him that i was going home after we finished the task. i kissed him told him i loved him and i left. so maybe you can just kiss him when he says that stuff say "i am going to go or i am going to...... ill be back, i love you" then exit like that. it seemed to work for me.




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