57 replies to this topic

[Quadman's Wife]

I have a wonderful husband - C6 C7 quad. When I met him I didn't even notice his disability; he has such an inspiring and fun personality. My parents love him, but they had some reservations. He told them he wasn't marrying me to be his caregiver. He just wanted to share his life with his best friend.

A couple months before we were married I trained on all aspects of his care. We got married and I trained a weekday morning caregiver. She quit and it all fell to me. He wasn't very motivated to get caregivers. He told people I was his best caregiver ever. I have grown to resent this after two years. I want to be his wife. I don't want to be his caregiver. I get 5 to 6 hours of sleep a night and I am completely drained and exhausted. I get migraines up to ten times a month and still have to do his care. Once in a while I get very desperate and he hires a caregiver. No one has lasted for more than a few months. I have told him he has to get full time caregivers. He is telling me he understands how hard it is, but I am being selfish and he never would have married me if I hadn't agreed to be his primary caregiver.

I'm feeling incredible guilt and don't know how to define my role as wife. What should be expected of a wife? How hard do I push for him to hire caregivers?

[edlee]

Quote

he never would have married me if I hadn't agreed to be his primary caregiver

Do you remember doing that???? If not, tell him so!!!!!!

I hate to be redundant, but,,,,We have the same percentage of assholes as in the general population.

Having sci doesn't give us some kind of super sensitivity to the feelings of others ( tho you might think it should).

Marriage is a partnership.... You both need to be happy... If that isn't possible, don't feel bad about dissolving the partnership. In the end it will be better for everyone involved.

As it stands, he is bullying you with his disability... If you allow it to continue, it will!!!!!

Best of luck to you both.
ed

[Motor]

Quadman's Wife, on Jan 28 2008, 08:02 PM, said:

I have a wonderful husband - C6 C7 quad. When I met him I didn't even notice his disability; he has such an inspiring and fun personality. My parents love him, but they had some reservations. He told them he wasn't marrying me to be his caregiver. He just wanted to share his life with his best friend.

A couple months before we were married I trained on all aspects of his care. We got married and I trained a weekday morning caregiver. She quit and it all fell to me. He wasn't very motivated to get caregivers. He told people I was his best caregiver ever. I have grown to resent this after two years. I want to be his wife. I don't want to be his caregiver. I get 5 to 6 hours of sleep a night and I am completely drained and exhausted. I get migraines up to ten times a month and still have to do his care. Once in a while I get very desperate and he hires a caregiver. No one has lasted for more than a few months. I have told him he has to get full time caregivers. He is telling me he understands how hard it is, but I am being selfish and he never would have married me if I hadn't agreed to be his primary caregiver.

I'm feeling incredible guilt and don't know how to define my role as wife. What should be expected of a wife? How hard do I push for him to hire caregivers?

Hi and welcome to the forum. I can speak on behalf of my wife. She was my caregiver from day one. Even in the hospital. I would let no one touch me. Finally 1 1/2 years later it was tuff love that saved my marriage. I was not transfering on my own. Still wearing diapers and made her dress me. Finally one nite she dropped me and said I can't do it anymore. She left me on the floor for 14 hours and made arrangements to have me put back in the hospital. I spent 8 weeks learning all my ADLs (activities of daily living). Upon discharge my life changed my wife had her husband back and lost her patient. Like you, she wanted to be my wife not my nurse. All her expierence helps in case of an emergency but I am 98% independant now. I owe it all to her. I know me being a para makes it easier but you must let him try to do as much as possible for himself. Try not to enable him and get outside help. It will kill your relationship if not. My wife complained that she raised 2 kids and was done changing diapers. She did in the begininng but waited for it to get better and it didn't for sometime. Feel free to holla if you any questions or comments. Tell him its hard to clean him change diapers and what ever and then lay next to him and then be his wife. It is not that you don;t love him but you need a break. Be well and keep the faith!

[Quadman's Wife]

I can't tell you how much I appreciate what you shared with me.

I need to read it and re-read it and stay strong. I truly believe I'm doing it for him as well as myself.

[KarenFerguson]

I think your husband not you is being selfish in this matter. He should realize that you (his wife) is miserable & that getting a caregiver is probably the best thing for his marriage.

My husband is a C5 quad and I know he'd like me to perform his bowel program instead of getting an aide to come three times a week, however, he gets an aide because he knows how draining the bowel program is on me. It's not like I don't help him either, I get him up and dressed the other days and get him into bed as well.

When you're married you're a team. Compromise is in order. Discuss your feelings with him and tell him you didn't want to be his caregiver, but his wife and life-long partner. Hopefully he'll understand how you feel.

[nomis]

Yeah Quadman's Wife, like the others I fully support you having a life for yourself. Like everyone else you are entitled to that.
Get tough if that's what's needed. Both you and your husband will be happier in the long run.
It sounds as though your husband needs to learn to trust others and face up to his dependency. It's not an easy road for him but he'll be better for taking it. And so will you.
Good luck. Go and give yourself a treat. Now.
cheers

[DaveP]

I'm a C6/7 and don't need any care at all. I've lived on my own many times with my dogs and have always managed fine. OK, it was a bit hard at first but it's mostly mind-over-matter and determination. Learning to transfer on your own is very important, and is mostly about technique rather than strength - lots of practice and not taking the easy way out. "Practice makes perfect"...

It took me 3 or 4 years to be able to tie my shoe laces on my own and that was a great turning point. I refused to use any adaptions or aids to make life easier, such as grips for knives and forks, toothbrushes, razor etc... I have one grab rail for transferring onto the toilet and a fold-down shower seat in my shower... I drive a car with standard hand controls an no tetra-grips or anything like that and take my wheechair apart and put it in the car on my own ... I enjoy offroading in an old 4X4 and am now thinking about buying a quad bike...

I mention all this purely to say that if he really wants to do it, he can. It may take time and lots of practice, lots of failures and lots of frustations, but it gets easier and faster all the time, and eventually he will be as independant as he wants to be.

For you guys, the hardest part is probably trying to break old habits and creating new ones. If you can do this without there being a major falling out and address this situation together with humour and laugh when it goes wrong, then it will get much easier. See if he'll agree to do as much as possible on his own and only provide just enough help for him to achieve his goal - like getting dresses... be there next to him and if he struggles with some part, help him just enough and le thim carry on. Doing up buttons will take time but he still needs to learn to find a way around this - it's purely technique, not strength.

He can do it and he will get more and more mobile and independant - but only if he wants to!

[Quadman's Wife]

DaveP, on Jan 29 2008, 04:00 AM, said:

I'm a C6/7 and don't need any care at all. I've lived on my own many times with my dogs and have always managed fine. OK, it was a bit hard at first but it's mostly mind-over-matter and determination. Learning to transfer on your own is very important, and is mostly about technique rather than strength - lots of practice and not taking the easy way out. "Practice makes perfect"...

It took me 3 or 4 years to be able to tie my shoe laces on my own and that was a great turning point. I refused to use any adaptions or aids to make life easier, such as grips for knives and forks, toothbrushes, razor etc... I have one grab rail for transferring onto the toilet and a fold-down shower seat in my shower... I drive a car with standard hand controls an no tetra-grips or anything like that and take my wheechair apart and put it in the car on my own ... I enjoy offroading in an old 4X4 and am now thinking about buying a quad bike...

I mention all this purely to say that if he really wants to do it, he can. It may take time and lots of practice, lots of failures and lots of frustations, but it gets easier and faster all the time, and eventually he will be as independant as he wants to be.

For you guys, the hardest part is probably trying to break old habits and creating new ones. If you can do this without there being a major falling out and address this situation together with humour and laugh when it goes wrong, then it will get much easier. See if he'll agree to do as much as possible on his own and only provide just enough help for him to achieve his goal - like getting dresses... be there next to him and if he struggles with some part, help him just enough and le thim carry on. Doing up buttons will take time but he still needs to learn to find a way around this - it's purely technique, not strength.

He can do it and he will get more and more mobile and independant - but only if he wants to!

Yes, it was a big deal when he started filling his own water cup and getting his own yogurt out of the fridge. Actually, it was a huge fight. Now he says he prefers it because he doesn't have to wait for me. I'm amazed at all that you can do. I'm truly amazed! We have to do a bowel program, I didn't know there was a way for him to use the toilet. I have a lot to learn.

[edlee]

Who was it that was doing all this for him before you met him? And for how long?

Is this injury new to him?

I ask, only because I may have been too quick to judge him an ass. If he hasn't had an opportunity to deal with these problems, on his own, in the past, there may be some excuse for the slow learning curve.

If , on the other hand, he simply didn't like paying for the help,,,, maybe I wasn't too quick, after all.
ed

[Quadman's Wife]

edlee, on Jan 29 2008, 10:21 PM, said:

Who was it that was doing all this for him before you met him? And for how long?

Is this injury new to him?

I ask, only because I may have been too quick to judge him an ass. If he hasn't had an opportunity to deal with these problems, on his own, in the past, there may be some excuse for the slow learning curve.

If , on the other hand, he simply didn't like paying for the help,,,, maybe I wasn't too quick, after all.
ed

These are very fair questions. He has had this injury for 18 years. He had several caregivers - morning weekday, evening weekday, morning weekend and evening weekend. But, when he moved to be married to me it meant building up a network of caregivers from scratch. After two years he never hired an evening or weekend caregiver. We have only had a weekday morning person for about half the time. We went over 7 months without anyone helping and I just about lost it. It finally got really bad a couple months ago when I wanted to go see one of my daughter's performances at the end of the semester in New York (it is her Senior year in college) and he just didn't seem to have the time to interview and hire someone. One of my best friends couldn't take it anymore and she insisted we train her so I could get away. He finally agreed to let me train her so I could go.

I just learned from his brother that he actually learned how to dress himself 18 years ago, but he stopped doing it when he got home and had caregivers. I never knew he could do it. One day we got interrupted while I was getting him dressed, my daughter needed help with something before she left for school. When I came back in the room he had put his own shirt on because he was tired of waiting for me. I was stunned. I didn't know he could do it. He can't tuck it down behind himself as well as I can and he hasn't done it since.

I've also learned that my husband's mom would baby him way too much over the years. One time when I was visiting we arrived at a family dinner. I helped my husband with his plate. I got all of his food for him from the buffet. Later his mom and cousin said they were in a panic before I got there trying to figure out who would serve him when we arrived. They were relieved that I served him. Now we go places and I don't serve him anymore. He can actually dish up and get his own food.

I think some people think I'm being harsh and I do feel guilty, but in the long run I think it is best he do for himself what he can do (I think). He says I am being prejudiced against quadriplegics - that if I had an AB husband I would do more for him than I do for him. I'm so worn out right now I can't even say if he is wrong or right.

[monikamadrid75]

Hey

My man and I are getting married on August and in all the time I have spent with him, I have made a point of not helping him more than I should - because he prefers it that way. He hangs on to every bit of independence he has. Sometimes this means me facilitating something, but the result is the same - he does it. He is always looking for new ways to be more independent. It is sometimes
easier and there are days where he is really tired or not well and I step in with some things, but generally - he just gets on with what he needs. He needs help with getting up and going to bed and dressing his bottom half, but all his grooming, eating, basic meal preparation, work stuff, cleaning (including vacuuming, loading the dishwasher) is done by him. We have made lots of adaptive 'things' to assist us in the house and most stuff is left in an accessible position for him to get to - so no excuses! I figure I get to do enough 'man stuff' and if he takes a load off the traditional 'woman stuff' then that's how it is.
He has carers 3 times a week to help with showers and bowel stuff and the getting up on the other days and getting to bed are done by me. I prefer it that way as it is a nice time to chat and just be together. Never stressful. The only thing that EVER bothers me is after we go shopping that I get to carry all the stuff into the house - but he is getting Wigits soon and then that will be a thing of the past too - as less effort to push means more bags on his lap!
Don't feel guilty. Too much help is a hinderance and it 'dis'ables him more. My man does not feel I am being hard - he loves that I know what he is potentially able to do and always does his best to take the load off me.

It should never get to the point where you feel that bad.... communication is really important. If I feel like it's too much, I just open my mouth and out it comes... best that way with less hard feelings in the end.

Good luck. Talk lots and if you need to vent, we are always here!

xxx
Monika

[Quadman's Wife]

Thanks, Monika.

It is so helpful to hear more and more how other people live and function. The only perspective I have ever had is my husband's. When I inquire about how other quadriplegics do things he convinces me that the only way is the way he wants things done. So, I just didn't know! He is very meticulous and detailed about his care. He bathes every day and has only missed taking a shower once in the 2+ years we've been married and I felt guilty all day because of it.

I'm learning so much. We have an appointment with a therapist this afternoon and then with our clergy tonight. My husband says he is going to tell them that if I don't do what I promised to do, be his primary caregiver, then he is out of here.

I would never abandon him or leave him without help, but I'm trying to send the message right now that he has to get caregivers. He just isn't motivated because he knows I'm there 24/7. So, I'm trying to step back so we can find a middle ground eventually. Does that make sense?

All of you guys have been so great!

PJ

[YYZ]

I know from hearing many stories that sometimes the caregiver as significant other situation works, and sometimes it is a disaster. Especially when the individual is injured post-onset of the relationship.

In your particular case, I think that the care obviously needs to be kept separate from the relationship. It is too bad that this wasn't established before you got married, though.

Just remember that every injury is different, and people chiming in (especially paraplegics) about what they can do is worthless. In the end, if you are that miserable, he should be making an effort to lighten the load. There may also be concomitant issues that you haven't even addressed yet.

YYZ

[kashley]

Quadman's Wife, on Jan 29 2008, 07:45 AM, said:

Yes, it was a big deal when he started filling his own water cup and getting his own yogurt out of the fridge. Actually, it was a huge fight. Now he says he prefers it because he doesn't have to wait for me. I'm amazed at all that you can do. I'm truly amazed! We have to do a bowel program, I didn't know there was a way for him to use the toilet. I have a lot to learn.

I hope things get better for you. I get tired too, but I go back to sleep after he goes to work. You should go to a medical supply site, you will see all sorts of stuff that will help in the bathroom. There shower chairs that go over the toliet.

[KimAndSophie]

Quadman's Wife, on Jan 30 2008, 01:09 AM, said:

I just learned from his brother that he actually learned how to dress himself 18 years ago, but he stopped doing it when he got home and had caregivers. I never knew he could do it. One day we got interrupted while I was getting him dressed, my daughter needed help with something before she left for school. When I came back in the room he had put his own shirt on because he was tired of waiting for me. I was stunned. I didn't know he could do it. He can't tuck it down behind himself as well as I can and he hasn't done it since.

I've also learned that my husband's mom would baby him way too much over the years. One time when I was visiting we arrived at a family dinner. I helped my husband with his plate. I got all of his food for him from the buffet. Later his mom and cousin said they were in a panic before I got there trying to figure out who would serve him when we arrived. They were relieved that I served him. Now we go places and I don't serve him anymore. He can actually dish up and get his own food.

Hi, I know I'm a bit late coming into this conversation, but I've been really busy lately. LOL I decided that I'd take a day and just relax for my birthday today! I'll try to catch up on everything I missed.

First of all welcome to the forum! It's a great place and I'm glad you found it! It sounds to me like your husband learned to take care of himself in rehab, but once he was home he was babied so much he didn't have to do anything at all for himself. Now he expects you to do the same thing his family has been doing for him ever since his injury (which in this case is EVERYTHING). He's never really had a chance to be independent since he left rehab (or even in rehab if it was anything like when I was there), so he got use to being dependent on others for everything.

I think like most others already said here that the best way to deal with this situation is with "tough love". He's proved that he can get his own yogurt from the fridge, so let him get him get his own snacks/food. If he needs help opening a jar, then after he gives it a try and can't (not a fake try, but actually really tried), then help him, but don't drop everything to run and do it. Like him putting his own shirt on, he'll get tired of waiting and do it himself eventually, and if not, then he probably really did need the help. His mom probably thought she was doing nothing but good things by treating him the way she has, because mothers just want to do everything they can to protect and look after their children, no matter how old they are. She didn't realize that by not letting him do things for himself she has totally taken away his independence. I think the best thing would be to see if you can get him back into rehab for awhile to re-learn what he had learned the first time he was there.

Quote

I think some people think I'm being harsh and I do feel guilty, but in the long run I think it is best he do for himself what he can do (I think). He says I am being prejudiced against quadriplegics - that if I had an AB husband I would do more for him than I do for him. I'm so worn out right now I can't even say if he is wrong or right.

If you had an able bodied husband would you treat him the way you treat your husband? I mean would you dress him, and do everything you do for your husband now for him? Would you do things he could do for himself for him just because he wasn't willing to do them on his own? I think you are being very kind to him, and you obviously love him a lot. Don't feel bad about being worn out, a lot of people just wouldn't have even bothered to stick around at all because it would have just been way too much for them to handle.

People will always look at you and think you are being harsh in certain situations. It's not that you are, but they believe that the "poor disabled person" can't possible do anything for themselves. Julian knows exactly what I mean here. I'm a c6 complete quad, and I've also been totally blind since birth. I have a guide dog and use a manual wheelchair. When we are out in public he gets nasty looks all the time because he's not "helping" me. I live on my own when he's not here with my current guide dog, and my guide/service dog in training (I'm training her myself). I'm completely independent (unless Julian leaves things on the top shelf LOL) and if I want to do something nothing will stop me until I'm doing whatever it is. I get ready on my own, transfer in and out of the car on my own, yet people still think he should be pushing me when we are in a mall when I am doing perfectly fine on my own (and having to slow down so Julian can keep up!). If I do need a push up a steep curb then I'll ask, or have Sophie pull me. Don't worry what people think of you. You will never make everyone happy. As long as you and your family are happy then that's all that matters.

I just wanted to add onto this post. Why not talk to your husband about how independent he could be if her tried. He could do things on his own time, feel great about himself because he did do them, and drive. He could have so much more freedom to do what he wants to do when he wants to do it!

Also, what will happen to him one of these days if you are sick or something happens to you and there is no one to take care of him? He has to realize that he needs to take care of himself.

Edited by KimAndSophie, 30 January 2008 - 07:23 PM.

[Lucydog]

You know something and I know Im sounding harsh but I think you just need to walk away. Do it now for both your sakes. Your husband seems to just want you to be there to look after him 24/7, dont you have a life, dreams hopes? I think you have to tell him how it is, although somehow I dont think hes really going to get it as he sounds totally wrapped up in himself. If I were you, Id go away for a weekend without him and leave him to it. He wont starve, and amazingly he will manage somehow, does he have no self respect? I know Im just a para giving advice and I have no intention of giving physical advice but there are plenty of people living very independent lives here with high level injuries. What Im concerned about is your own mental health. Please dont stay with him out of duty, if you feel like this after 2 years of marriage whats it going to be like after 10? Please dont waste your life on a guy who doesnt really know what a wonderful partner he has, please stop letting him control you. You are worth so much more, you only have one life and he will take it all from you, I know because Ive seen this happen a few times now. Where is his self respect, where is his respect for you? You need to sit and think very carefully where do you see yourself in 10 years time? Can you contemplate 20 years of this? My harsh advice is that it will not improve unless he is forced to see the situation, it may even be too late, but you must have some self preservation otherwise he will steal your soul.

take lots of care
L

[edlee]

Others have said it, but I think it needs saying,again.

The man is not giving you the respect you deserve!!!!!!

The only way to convince him of his unacceptable behavior, may be to leave him. I would like it better if he would see reason sooner, but if he doesn't you need to prepare yourself for it.

There can be no love without respect!!! He has none for you now,,,, how long before you lose your's, for him????

Get him to log on here... Let's see if he can convince us.

If you have any self respect left,, the next time he says "my way or the highway", ,,,TAKE THE HIGHWAY!!!!!

Best of luck, tho I know you won't listen.
ed

[Quadman's Wife]

I have asked him, "What would you do if I died today? Who would take care of you?" He lists a few people that could help him and I ask him why he can't ask them to help out so I can take a little break. He says he can't do that to people.

He says the real problem is he just can't hire people. I'm going to hit it hard and start trying to hire caregivers. I've tried in the past but he wants to be there for the interviews and never had time. He feels I'm being controlling and disprespectful if I just do it on my own. Well, maybe controlling and disrespectful for a little while is better than miserable for a long time.

He is incredibly independent in the "real world." He works full time, drives and even caths during the day while he is gone. It's just when he gets home he wants me to do everything.

I really think we can work this out. But, I can tell there are going to be some rough times. I've had some suggestions to get with an OT to increase his independence at home with his care. I'm going to work on this, too.

I'm learning so much from all of you.

Keep the advice and perspectives coming.

PJ

[Brindabella]

Quadman's Wife, on Jan 31 2008, 08:55 AM, said:

I have asked him, "What would you do if I died today? Who would take care of you?" He lists a few people that could help him and I ask him why he can't ask them to help out so I can take a little break. He says he can't do that to people.

He says the real problem is he just can't hire people. I'm going to hit it hard and start trying to hire caregivers. I've tried in the past but he wants to be there for the interviews and never had time. He feels I'm being controlling and disprespectful if I just do it on my own. Well, maybe controlling and disrespectful for a little while is better than miserable for a long time.

He is incredibly independent in the "real world." He works full time, drives and even caths during the day while he is gone. It's just when he gets home he wants me to do everything.

I really think we can work this out. But, I can tell there are going to be some rough times. I've had some suggestions to get with an OT to increase his independence at home with his care. I'm going to work on this, too.

I'm learning so much from all of you.

Keep the advice and perspectives coming.

PJ

Move out for a while, and wait. You'll need to be strong, but he'll come round. Good luck.

Edited by Brindabella, 31 January 2008 - 10:33 AM.

[anabelle]

Don't you think you need to accept responsibility for the part you've played in turning your husband into a helpless, dependent mess by doing "everything" for him these past 2 years? I think you should ask yourself why you wanted to make him so dependent on you and to discourage his self-reliance. I'm not surprised at your husband's reaction to your being fed up w/the current situation. But, you need to look at it from his perspective. You 2 adopted a life-style where you encouraged him to rely on you to take care of his most basic physical needs. Now suddenly you want to change the rules and he's not going for it. I don't mean this in a harsh way, but if you continue to see yourself as the victim in all this, and don't acknowledge your role in creating the present dynamic and accept the fact that you encouraged your present situation b/c it benefited you psychologically in some way, it's unlikely you'll be able to create a healthy, mature relationship w/your spouse.

[kashley]

Quadman's Wife, on Jan 30 2008, 10:14 AM, said:

I'm learning so much. We have an appointment with a therapist this afternoon and then with our clergy tonight. My husband says he is going to tell them that if I don't do what I promised to do, be his primary caregiver, then he is out of here.

How did it go with the therapist and clergy? My dad's mother babied him and he is AB, he has to eat sandwiches the whole time when my mom is called out of town. Then there is the big clean up when my mom gets home. Just like the movies, there is piles laundry left for her.

Edited by kashley, 31 January 2008 - 04:09 PM.

[Quadman's Wife]

anabelle, on Jan 31 2008, 05:36 AM, said:

Don't you think you need to accept responsibility for the part you've played in turning your husband into a helpless, dependent mess by doing "everything" for him these past 2 years? I think you should ask yourself why you wanted to make him so dependent on you and to discourage his self-reliance. I'm not surprised at your husband's reaction to your being fed up w/the current situation. But, you need to look at it from his perspective. You 2 adopted a life-style where you encouraged him to rely on you to take care of his most basic physical needs. Now suddenly you want to change the rules and he's not going for it. I don't mean this in a harsh way, but if you continue to see yourself as the victim in all this, and don't acknowledge your role in creating the present dynamic and accept the fact that you encouraged your present situation b/c it benefited you psychologically in some way, it's unlikely you'll be able to create a healthy, mature relationship w/your spouse.

Yes, you are definitely right. I did create this situation and it is shocking to him that I want him to be more independent.

It has been well over a year that we have been struggling and I've been trying to get him to get caregivers and do more for himself. I guess it will take baby steps. I know what you mean by playing the victim roll . . . that's not going to get me anywhere.

Keep the advice and perspectives coming!

kashley, on Jan 31 2008, 10:04 AM, said:

Quadman's Wife, on Jan 30 2008, 10:14 AM, said:

I'm learning so much. We have an appointment with a therapist this afternoon and then with our clergy tonight. My husband says he is going to tell them that if I don't do what I promised to do, be his primary caregiver, then he is out of here.

How did it go with the therapist and clergy? My dad's mother babied him and he is AB, he has to eat sandwiches the whole time when my mom is called out of town. Then there is the big clean up when my mom gets home. Just like the movies, there is piles laundry left for her.

We went to the therapist and he talked pretty much the whole time. He talked about his hopes and dreams for marriage and then would illustrate what I've done wrong on each of those points. I was very shut down by the end of the session because it is hard to sit there and listen to what a terrible person you are for an hour. I tried to say things and I was a complete idiot. I couldn't think straight. I would start to say something and my husband kept interrupting with, "That's an exaggeration." or "That was two months ago, not three months ago." or "That's not at all how it happened." or "You were the one that didn't want a caregiver." Anyway, my train of thought kept gettting blocked . . . I shut down. The therapist said he doesn't usually do this, but he wants to see us separately next week. I was looking forward to the session, but I guess sometimes it is going to be very hard and painful (duh). I truly believe I just came home and turned into a zombie. I didn't go see the clergy with my husband. I emailed them both and said my self image was a bit shattered and I didn't feel up to another hour of being criticized. My husband went and he said they had a really good talk. I couldn't talk to him the rest of the night. I'm just kinda bumping into walls today and crying once in a while. I feel pretty lost, but I know that it will get better. I'm going to do some praying and go out with some girlfriends tonight.

kashley, on Jan 31 2008, 10:04 AM, said:

Quadman's Wife, on Jan 30 2008, 10:14 AM, said:

I'm learning so much. We have an appointment with a therapist this afternoon and then with our clergy tonight. My husband says he is going to tell them that if I don't do what I promised to do, be his primary caregiver, then he is out of here.

How did it go with the therapist and clergy? My dad's mother babied him and he is AB, he has to eat sandwiches the whole time when my mom is called out of town. Then there is the big clean up when my mom gets home. Just like the movies, there is piles laundry left for her.

We went to the therapist and my husband talked pretty much the whole time. He talked about his hopes and dreams for marriage and then would illustrate what I've done wrong on each of those points. I was very shut down by the end of the session because it is hard to sit there and listen to what a terrible person you are for an hour. I tried to say things and I was a complete idiot. I couldn't think straight. I would start to say something and my husband kept interrupting with, "That's an exaggeration." or "That was two months ago, not three months ago." or "That's not at all how it happened." or "You were the one that didn't want a caregiver." Anyway, my train of thought kept gettting blocked . . . I shut down. The therapist said he doesn't usually do this, but he wants to see us separately next week. I was looking forward to the session, but I guess sometimes it is going to be very hard and painful (duh). I truly believe I just came home and turned into a zombie. I didn't go see the clergy with my husband. I emailed them both and said my self image was a bit shattered and I didn't feel up to another hour of being criticized. My husband went and he said they had a really good talk. I couldn't talk to him the rest of the night. I'm just kinda bumping into walls today and crying once in a while. I feel pretty lost, but I know that it will get better. I'm going to do some praying and go out with some girlfriends tonight.

[KimAndSophie]

Quadman's Wife, on Jan 31 2008, 01:21 PM, said:

We went to the therapist and he talked pretty much the whole time. He talked about his hopes and dreams for marriage and then would illustrate what I've done wrong on each of those points. I was very shut down by the end of the session because it is hard to sit there and listen to what a terrible person you are for an hour. I tried to say things and I was a complete idiot. I couldn't think straight. I would start to say something and my husband kept interrupting with, "That's an exaggeration." or "That was two months ago, not three months ago." or "That's not at all how it happened." or "You were the one that didn't want a caregiver." Anyway, my train of thought kept gettting blocked . . . I shut down. The therapist said he doesn't usually do this, but he wants to see us separately next week. I was looking forward to the session, but I guess sometimes it is going to be very hard and painful (duh). I truly believe I just came home and turned into a zombie. I didn't go see the clergy with my husband. I emailed them both and said my self image was a bit shattered and I didn't feel up to another hour of being criticized. My husband went and he said they had a really good talk. I couldn't talk to him the rest of the night. I'm just kinda bumping into walls today and crying once in a while. I feel pretty lost, but I know that it will get better. I'm going to do some praying and go out with some girlfriends tonight.

I was thinking as I read this post that you should see if you can each talk to the therapist seperatly once. Seeing how you are going to do this how about writing down all of the things you want to talk about so you can have them with you when you go there. Then you can remember everything you wanted to say. If you write down each thing and some of the points about each under it then you should have a cleaer head when you go in there and not miss anything. I hope it goes well and your feeling better soon.

[Quadman's Wife]

KimAndSophie, on Jan 31 2008, 01:25 PM, said:

Quadman's Wife, on Jan 31 2008, 01:21 PM, said:

We went to the therapist and he talked pretty much the whole time. He talked about his hopes and dreams for marriage and then would illustrate what I've done wrong on each of those points. I was very shut down by the end of the session because it is hard to sit there and listen to what a terrible person you are for an hour. I tried to say things and I was a complete idiot. I couldn't think straight. I would start to say something and my husband kept interrupting with, "That's an exaggeration." or "That was two months ago, not three months ago." or "That's not at all how it happened." or "You were the one that didn't want a caregiver." Anyway, my train of thought kept gettting blocked . . . I shut down. The therapist said he doesn't usually do this, but he wants to see us separately next week. I was looking forward to the session, but I guess sometimes it is going to be very hard and painful (duh). I truly believe I just came home and turned into a zombie. I didn't go see the clergy with my husband. I emailed them both and said my self image was a bit shattered and I didn't feel up to another hour of being criticized. My husband went and he said they had a really good talk. I couldn't talk to him the rest of the night. I'm just kinda bumping into walls today and crying once in a while. I feel pretty lost, but I know that it will get better. I'm going to do some praying and go out with some girlfriends tonight.

I was thinking as I read this post that you should see if you can each talk to the therapist seperatly once. Seeing how you are going to do this how about writing down all of the things you want to talk about so you can have them with you when you go there. Then you can remember everything you wanted to say. If you write down each thing and some of the points about each under it then you should have a cleaer head when you go in there and not miss anything. I hope it goes well and your feeling better soon.

Thanks for the advice. I left the therapist a message to schedule my own session.

[DaveP]

Maybe it would be useful for your husband to read this entire thread. This will help him understand what you're thinking and feeling, as well as read other people's opinions and suggestions, and show him that there are other ways to do things.

Ok - being the manufacturer of testosterone, he's likely to flip out, but that's normal - like a dog barking! lol

Would be nice to get his side of the story too.

[deyoht_kwa]

Hi There exhausted. My husband is a T6-7-8, I was his primary caregiver and his counsellor and his everything... I was his rock! I was raised to do "for your man" and honestly I loved it. I loved getting up at 4 or 5 am and making his breakfast and his lunch, making him coffee - kissing him and seeing him off. Then a couple hours later get the 5 kids up and get 3 of them ready for school.

I had the supper on the table when he got home.. and i loved it! (Not every day did I do this, nor did he care when I didn't do it). So when he fell 22ft at work and left him a T6/7/8 Para it was devastating for us both. I was his primary everything... but that was because I wanted to be. I needed to be at that time. I did everything for him, I was his wound care nurse, his nurse, his PSW, his banker, his counsellor, I was also his speaker! especially at appointments. We had to go to a baseball banquet for our kids and he was texting me every few minuets, "where are u, are u on your way, how long" and I asked him why.. he couldn't do the public thing without me there... because I faced the questions. (this was only 2 mths post injury). His baseball team we coached for 2 years showed up at our home and asked him if he was coaching this year n he said yes... this was 9 mths post injury, but I was still his everything mentioned above. Finally, after almost 1 and 1/2 years I said I can't do it all... I need a shoulder now. I just told him he had to do things for himself, but i'd be there to support him. We found him a counsellor, we got him an OT, we got him a peer-counsellor, and we found his wife underneath all those hats I wore.

I told him i couldn't do it anymore, and then i would leave to do the groceries, and left him home... he figured it out! And he also figured out he could do it by himself. Now I attend his appointments with him, as his wife, and I'm just there as a memory notebook (to give dates, amounts, and times)... my husband didn't even know what med's he was taking, or how much cause that's what I did.

Now I can take care of his wounds, but I don't change the dressings, I just let him know if I think they are doing it right or how well it looks (cuz i'm trained to do these things), I also take care of him when I'm NOT exhausted.. but honestly, he does it himself now.

with supper, I get him to help me peel potatoes, or he bbq's or fries something.. but we do it together and it made the world of difference!

Remember that 95% of marriages dont' work out when the wife tries to be the nurse... and ask yourself where do you want to be? in the other 5% is what I found! Hope this helps! Good luck

[In The Wind]

Hey Q-wife,

I’m a C5-7 quad, although I do have good use of my hands and arms. I’m completely independent. I can guarantee that if you can force him to learn to be as independent as he can be, he will be much happier in the end.

I know that I hate changes in my routine. I have a way of doing things and I have a tendency to resist changes. But every time I’ve had to learn a new way it’s been for the better. Your hubby is being a silly, stupid fool. I cannot say how much I would love to have a wife or GF to be with, and everytime I hear about these “woe is me” types I just want to strangle them.

Bottom line. Take care of yourself. If he doesn’t want to be as self sufficient as possible, then he needs to be in a home.

[Quadman's Wife]

In The Wind, on Feb 1 2008, 10:47 AM, said:

I cannot say how much I would love to have a wife or GF to be with, and everytime I hear about these “woe is me” types I just want to strangle them.

Hi ITW,

I really appreciate your perspective. It reminds me of when we were at the Therapist the other day. My husband talked for a long time about how important his care is and how he never would have married me if I was going to do it for him. At the end of what he said the Therapist looked at me and asked what I had wanted out of the marriage. My husband interrupted and said, "Oh, there are a lot of other things I wanted, also, not just the care." The therapist looked at my husband and I did, too. I asked my husband, "Really, well then why don't you tell us about those things?" My husband proceeded to list a lot of romantic wonderful things: best friend, fun, ups and downs, joy of raising kids, affection, etc. . . After each point, though, he would mention how those things haven't happened. But, after his long list I said, "Okay, let's do all those things and find someone else to do your care." My husband said, "That isn't how it works."

Well, I told him I wouldn't do his care this weekend. And he has been really angry with me. But, he found someone to do his care! What a miracle. I am training someone to do his night care for weekdays and I've just hired another person to do his weekend nights. It only took me 24 hours to find someone!

I know I'm going to the other extreme, but hopefully when he finds and appreciates some independence from me we can balance out and find a middle ground. I enjoy making dinner, rubbing his achey shoulders, sitting by him at events, talking with him about his work . . .

I wish everyone whose heart desired to be with someone could have a someone.

Thanks for your thoughts!

deyoht_kwa, on Feb 1 2008, 10:30 AM, said:

Hi There exhausted. My husband is a T6-7-8, I was his primary caregiver and his counsellor and his everything... I was his rock! I was raised to do "for your man" and honestly I loved it. I loved getting up at 4 or 5 am and making his breakfast and his lunch, making him coffee - kissing him and seeing him off. Then a couple hours later get the 5 kids up and get 3 of them ready for school.

I had the supper on the table when he got home.. and i loved it! (Not every day did I do this, nor did he care when I didn't do it). So when he fell 22ft at work and left him a T6/7/8 Para it was devastating for us both. I was his primary everything... but that was because I wanted to be. I needed to be at that time. I did everything for him, I was his wound care nurse, his nurse, his PSW, his banker, his counsellor, I was also his speaker! especially at appointments. We had to go to a baseball banquet for our kids and he was texting me every few minuets, "where are u, are u on your way, how long" and I asked him why.. he couldn't do the public thing without me there... because I faced the questions. (this was only 2 mths post injury). His baseball team we coached for 2 years showed up at our home and asked him if he was coaching this year n he said yes... this was 9 mths post injury, but I was still his everything mentioned above. Finally, after almost 1 and 1/2 years I said I can't do it all... I need a shoulder now. I just told him he had to do things for himself, but i'd be there to support him. We found him a counsellor, we got him an OT, we got him a peer-counsellor, and we found his wife underneath all those hats I wore.

I told him i couldn't do it anymore, and then i would leave to do the groceries, and left him home... he figured it out! And he also figured out he could do it by himself. Now I attend his appointments with him, as his wife, and I'm just there as a memory notebook (to give dates, amounts, and times)... my husband didn't even know what med's he was taking, or how much cause that's what I did.

Now I can take care of his wounds, but I don't change the dressings, I just let him know if I think they are doing it right or how well it looks (cuz i'm trained to do these things), I also take care of him when I'm NOT exhausted.. but honestly, he does it himself now.

with supper, I get him to help me peel potatoes, or he bbq's or fries something.. but we do it together and it made the world of difference!

Remember that 95% of marriages dont' work out when the wife tries to be the nurse... and ask yourself where do you want to be? in the other 5% is what I found! Hope this helps! Good luck

[Quadman's Wife]

deyoht_kwa, on Feb 1 2008, 10:30 AM, said:

Finally, after almost 1 and 1/2 years I said I can't do it all... I need a shoulder now. I just told him he had to do things for himself, but i'd be there to support him. We found him a counsellor, we got him an OT, we got him a peer-counsellor, and we found his wife underneath all those hats I wore.

Remember that 95% of marriages dont' work out when the wife tries to be the nurse... and ask yourself where do you want to be? in the other 5% is what I found! Hope this helps! Good luck

You are living my dream! I am very good at my husband's care and I'm also very fast which he likes. He is patient . . . I would go looney waiting on slow caregivers. So, I know he really prefers me because I keep him so healthy and I don't waste his time. But, I also train people really well. So, I want to be the trainer, the would care when it is needed, but have the majority of our life be sharing the day to day things with each other.

I'm not giving up. He is my dream husband when it comes to his other qualities; I just got things off track by doing everything for him. You, along with the others on this site, continue to inspire me.

[Rose May]

I am grateful to read all ur views in a relationship, the commitment, the trust and espcially the patient. Love is patient....sure it is... I am in love or should i say am having a special feelings ( that am sure of it) to a SCI c6 man... but i dont know if he believes me...I never knew anything that hinders but I have been looking all the topics that he wants me to know and what I will be entering.... but its best to know it straight from him right? although I need some views from people here esp the wives or girlfriends. When u love someone you dont see anything wrong with it. But u look forward that both will be happy...

Could everyone share how to make relationship works...anything... thanks

Rose