57 replies to this topic

[anabelle]

Quadman's Wife, on Feb 1 2008, 01:08 PM, said:

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, on Feb 1 2008, 01:14 PM, said:

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.

Quadman's wife: It's good to hear the optimism in your voice when you talk about what you cherish about your relationship w/your husband. Keep pushing him to be more independent than he ever thought he could be!

[Susi]

edlee, on Jan 29 2008, 02:27 AM, said:

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

I wholeheartedly agree with ed, and others here. My principal caregiver is my husband, and after 5 years, although much easier now, than before, he is still exhausted, both mentally and emotionally. He has weathered everything with great sacrifice to his own personal wellbeing and "manliness". It is difficult to be a husband/wife to a partner who is disabled, without losing the emotional development to being a nurturer and then to be expected to satisfy the emotional part of marriage.

What i have found most lasting in a happy and stable relationship like ours, is the complete honesty given, as demanded by me right from get go. It is in this honesty that we are jerked out of our comfort zone. Sad to say, we get complacent and ambivelant, and don't give a thought to our partner caregivers. You have to bee honest and exercise tough love, to snap him out of it, otherwise sorry to say like Ed, the relationship is in danger of becoming hostile.

In my husbands honesty, i have had to try and do things independantly and although I get frustrated with limited mobility in hands, I persevere as I do not want to lose the most precious gift given to me, in the form of my husband. Above all, this has made me step out of myself, and take a good hard look at the person I sometimes am. I owe it to him to fight hard and better myself, because in this way, he can become the lover he was, and not the nuturer at all times.

You owe it to both of you, to give him "shock" therapy. Strike for 24hrs if you have to, and get a caregiver to take your place, or else..... Print all these answers and show it to him!

Best of luck, and I am praying that you do find a happy solution.

[Quadman's Wife]

[You have to bee honest and exercise tough love, to snap him out of it, otherwise sorry to say like Ed, the relationship is in danger of becoming hostile.

In my husbands honesty, i have had to try and do things independantly and although I get frustrated with limited mobility in hands, I persevere as I do not want to lose the most precious gift given to me, in the form of my husband. Above all, this has made me step out of myself, and take a good hard look at the person I sometimes am. I owe it to him to fight hard and better myself, because in this way, he can become the lover he was, and not the nuturer at all times.

You owe it to both of you, to give him "shock" therapy. Strike for 24hrs if you have to, and get a caregiver to take your place, or else..... Print all these answers and show it to him!

Best of luck, and I am praying that you do find a happy solution.


[/quote]
I appreciate your thoughts and prayers.

My husband has not made one more threat to leave and end the marriage if I didn't do his care and I've gotten a big break from doing his care. I've really needed it. I think he is doing really well. There is definitely a distance between us, but we are moving forward. It is going to take some time to adjust to the changes.

Being honest has been paramount. Our therapist met with us separately and we go together next week. We are going to regroup and look at how to make this marriage work. My therapist was very impressed with all of the feedback I got from everyone on this website. I printed out a lot of it and he could see how invaluable it has been for me. It has helped me get rid of this dark cloud of hopelessness and see the sun shine, again. It is so helpful to know how others live and how they've gotten through the tough times.

I am so grateful! Maybe I can be the one giving others advice some day!

[nomis]

Good going Quadman's Wife.
We all have to work to make our relationships work and it sounds like your path is moving into some good learning that many of us can benefit from.
All the best for building a positive future.

[qbounce]

That's a tough one Rose May, that might do better on a new topic?

Quadman'swife,
I'm also a C6-7, only have function in one good hand, and 2 years post injury.
I'm capable of doing everything on my own except my bowel program, which I'll soon do with the help of a hand held suppository injector and digital stimulaton device. This is my last hurdle, as it were, before re-learning to drive.
I mean. . . I can cook, sweap the floor, and do the dishes too, but don't tell my caregiver that!
I had a mentor, another quad C6-7 with one good hand also, 25 years post injury who does everything on his own too. He can even get off the floor into his chair.
Another quad said it best earlier in this thread, "It's all technique, not strength." He just has to try and keep trying . Yes, it's frustrating at times . . . so I step back, take a breather, regroup and try again the next day, if need be.
All the best to you and yours.

[GLENDA]

Quadman's Wife, on Feb 1 2008, 12:14 PM, said:

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.

Hey Q-lady ...in tough love there is a thing called "LOVING TO DEATH". I had to learn the hard way.
LOL

[Quadman's Wife]

My husband logged into this thread and he is telling me that I have lied and not been honest about our situation. He tells me that his situation as a c6 c7 is different than anyone on here and I can't expect from him what others say they can do.

I have really appreciated the support and advice. He continues to discount what I'm learning and what I was trying to do to change our relationship from patient and caregiver to husband and wife.

I'm really discouraged and disappointed. He seems continually focused on being right over being happy.

[qbounce]

Can you give us some insite about what your husband says? What are his functions/ limitations? What does he do on his own? I can tell you, at least from my experience, the more I've TRIED to do, the better I've gotten at it.
Sorry to hear he's not being receptive to your frustrations.

[kewlcatkez]

Quadman's Wife, on Feb 27 2008, 04:58 AM, said:

My husband logged into this thread and he is telling me that I have lied and not been honest about our situation. He tells me that his situation as a c6 c7 is different than anyone on here and I can't expect from him what others say they can do.

I have really appreciated the support and advice. He continues to discount what I'm learning and what I was trying to do to change our relationship from patient and caregiver to husband and wife.

I'm really discouraged and disappointed. He seems continually focused on being right over being happy.

Hello again,

Whilst ever y injury and level of injury is different, that isn't really the issue is it? Its not if he can do things for himself, its empowering and encouraging him to do what he can for himself and getting outside help whom he can employ to do the rest. ...So that you can be husband and wife and not carer and client...you know that,. Keep your focus on the real aims and reasons.

Your husband is trying to manipulate you by saying these things...I mean looking back in the thread, you say how independent and self sufficient and motivated to go to work and do all he can for himself there...and isn't at home..So is it that he is Like the other C6, C7s when at work, but "that his situation as a c6 c7 is different than anyone on here and I can't expect from him what others say they can do" at HOME??

Does he not know how close to losing a Wife AND a caregiver he is? Its in his interests to do as much as he can AND hire someone to do what he can't...no matter what happens with your marriage. To be honest, he is sounding like a spoilt child..but I understand that such an emotive subject does tend to bring out the irrational side...

Hand in there Quad wife,

take care,

K

[zeta]

He does sound exactly like a spoiled child! If you can dress yourself why would you want anyone to do it for you? Unless you are just plain lazy. He gets tired of waiting on you? lol If he had my husband for a wife he would be perpetually waiting. It only took my husband about 6 mos. to get sick and tired of waiting on me. Finally he yelled at me "At least try to do something dammit!". I have to at least try and fail several times before my hubby does things for me. Even then we still look for other ways for me to accomplish the task. I love the independence that I have, and so do the other quads posting here.

How does he know he can't do something if he never tries to do it? Tell him 'at least try who knows you may actually like doing it!'.

Zeta

[quadman]

To my wife who I love so much!!

All, I am Quadman. First of all, I want you to know I love and cherish my wife and I appreciate all my wife has done and gone through for me. These first two years have been really hard and sometimes my worst has shown through as we have adjusted to not only being married, but having to deal with my quadriplegia. Also, I think I failed to recognize HOW hard it has been because sometimes it is easier to be in denial than to accept that you are causing someone you love such hardship. However, because of what happened during the first two years, my wife has gone through similar emotions that each one of us that is paralyzed has gone through when first injured…the grieving process. I appreciate that you guys and gals have been trying to help my wife, but I wish one of you had picked up on this and heard what she wasn’t saying. You also should always remember that there are two sides to every story and then there is the truth.

Sweetheart, please correct anything I say that you think is not true.

In case anyone forgot…here is the original post.

“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?”

When my wife posted this on Jan. 29th we had had a morning caregiver for 2 months and a night caregiver for 2 weeks and have been looking for weekend caregivers for months…as some of you know…they can be the hardest to find. The argument that precipitated this post was about her not helping me one night and one morning on the preceding weekend she had agreed to help .

Our first caregiver lasted three months and the longest was 9 months. We have had plenty who have come for a little while and quit and also the not show up or call when hired. Our current morning caregiver has now been around 3 months, not missed a day and is one of the best I have had Our current night caregiver has been here 3 weeks and is looking good…we will see.

It has only been 3 months since we decided to get full time caregivers. My wife and I have both looked for caregivers and the results have sucked. To say I have not been motivated is untrue and nothing has kept my wife from being motivated. However, many times over the last two years she has said she would not help me because I hired them before I moved to Texas, I should be the one to do it now. I would be more than happy for my wife to find weekend caregivers.

My comment on “best” caregiver is taken out of context…my communication on that subject was meant to reflect my wife’s incredible competency and love for me in that helping me means more than it does for caregivers. It was never meant to indicate that she is or was a caregiver…she is my wife who happens to do my care sometimes and does it better than any one has.

I certainly have never said that I would not have married my wife if she did not agree to be my primary caregiver.

Let me make this clear though…this has been hard on my wife.

Let me start from the beginning. I was injured 19 years ago in Arizona. I am a functionally complete C6-C7 quad with a little tricep and zero hand function. As many have suggested, I have had a total of about 9 months of occupational and physical therapy rehab post halo. I had two months with my halo on.

I had 3 months of physical and occupational therapy right after I went home where I blew out my left elbow. I required months of rehab and three cortisone shots before it healed. I have permanently lost some range of motion in it.

Two years after my accident I went to outpatient physical and occupational rehab for 6 months with the goal to become as independent as possible. After 6 months and a severely pulled muscle in my back attempting to dress myself (I never was able to do that independently) with pull straps and sweat pants, unable to sit up in bed independently and unable to transfer independently due to balance and spasm issues. I took what I had learned and took the route of having caregivers to work with me to get my care over with ASAP so my care would not be my life and I could pursue my independence through getting an education resulting in financial freedom as I grew up very poor and had barely enough money to pay for caregivers, not much else. I did achieve that graduating at the top of my class at one of the largest universities in the nation. I became a financial analyst at a high tech firm and have now been doing that for 11 years. I work 40 to 60 hours a week and I make a significant salary. Please do not comment on by ability to work hard or my independence or lack there of. Each of us that is paralyzed develops their routine over time and only we know why we do the things the way we do and the abilities we do and do not have. I know that each paralyzed person wants to brag on there level of independence, but it is unhelpful in many situations because every injury and the resulting function even at the same level is different and everyone has different body types that make certain things easier or harder. It is extremely unhelpful for incomplete quads with hand movements or paras to talk about their independence. When I was walking I could bench 305 pounds and squat 450. I had a 36 inch vertical and I ran a 4.65 40. It has about as much relevance. Sorry for that but I am sure other complete quads were just about as annoyed as I was from those comments.

Now… my courtship with my wife. I had been looking a long time for someone who is as wonderful as my wife and could look past the wheelchair and see me. That is my wife. We met in Arizona and she lives in Texas. We fell in love for all the right reasons. We would talk for 4 hours on the phone every night and that was not enough. She was very loving and affectionate. She is beautiful, funny, highly intelligent, spiritual and a fantastic mother of 3 girls. We knew instantly we were made for one another. However, here was and is the problem. She lived in Texas. I lived in Arizona. The care network I had developed was in Arizona. She and her daughters had established a life in Texas on a 10 acre farm with her 5 horses. We did not want to change that, therefore I needed to move. I am a native Arizonan. I gave up my family and friends and care network and found a higher paying job in Texas. I would only did that, and my wife and I had many conversations about it, if she could convince me she would be there for me as we built up a network.

Originally, my wife did not want me to have caregivers at all. She wanted to do it because she loved me and she did not want strangers in our bedroom. I related to her what my friend, a wonderful OT, Carol had said about having caregivers. Carol said that she found that couples that had caregivers were happier than couples that did not because of the very issues we are currently talking about . I finally convinced her to let me have caregivers 5 days a week in the morning and two nights a week in the evening. As far as caregivers, you are preaching to the choir.

Now, being a financial analyst I reviewed our finances and budget before we were married. We have to be able to afford all this. In doing so, we determined that my wife would need to earn $1,000 a month to make ends meet. She could do this any way she wanted…most likely real estate. WE wanted her to stay home with her 2 remaining girls at home.

As is now well chronicled, the caregiver situation has been a struggle and my wife ended up doing WAY to much of my care and the $1,000 a month never happened. Even when we had morning caregivers, we made the mistake of my wife being in the room when my care is done ( I encouraged her to go to another room during the 9 month caregiver but she did not want to because it is her room…who can blame her) My wife also did my bowel care those 2 years…big mistake (the current caregiver is doing it) and put me to bed almost every night. Certainly during that time there were times I procrastinated getting caregivers as our lives were very busy and it is a sucky job. However, most of the time I did not and nothing ever stopped my wife from trying also except for her insistence sometimes that only I should do it. Also during this time I felt I was between a rock and a hard place because my wife did not and really still does not like having caregivers in our bedroom (who can blame her). Part of the problem in hiring caregivers is we live out of the city and most everyone has to drive 20 minutes plus to get to us.

O.k….where are we now. We have a great caregiver during the week that has been with us three months. We have a nighttime caregiver we have had for 3 weeks. As I said earlier I have been trying to get weekend help for months. My wife will not help me at all and has said she will never do my care again. Because of that, I am stretching my weekday help very thin because she is the only one other than my wife who knows my bowel care. I do not want to lose this person. My weekends are being done by a family friend and my sister. They both work full-time jobs and have families. Two weekends ago I had to skip bowel care because my wife would not help me and my weekday caregiver was out of town. Meanwhile, to do this, we will be $2,400 over budget. We have a rental house with $90k of equity in it I have wanted to sell for some time to pay for my care while our youngest is still at home but my wife does not want to do it. She has told me on many occasions that she should not have to go to work to “buy her freedom”. She also has said she would not have gotten married if she could not stay at home. She just recently said she is looking, but she recently turned down a job offer. I am not sure where she is at as she is not talking to me.

I think as you can see this HAS been hard. When my wife told me she would never do my care again I felt completely betrayed as I made a big sacrifice to move here and I did it on her word that she would be there when needed. We have always had the option to move back to Arizona where my network still is. We both have made decisions to get us where we are and to lay it all in my lap is unfair.

Sweetheart, I love you and you know that I am more than happy to have full-time caregivers. I appreciate all that you have done. I am sorry this has been so difficult and not worked out the way we had hoped. I am sorry that dealing with my quadriplegia has been so hard. I want us to recapture the passion we have lost. However, I need you to meet me half way. Help me pay for the care. Help me get the caregivers if you think you can find them faster. Help me with my care when I need it, but let’s try to keep that to a minimum, but I need to know you will be there for me when I do. Most importantly…talk to me and let's continue to walk through this together.

I love you,

Quadman

p.s. I have two interviews tonight for the weekend mornings…wish me luck

[kewlcatkez]

Hi Quadman,

Thanks for your side to the 'story' so to speak. It certainly provides balance. I am going to have to reply more later as about to eat dinner ( a take away, lucky me! lol) so I will be back and will perhaps comment further later.

Suffice to say that a lot of the comments re you were made only one the information we had..now there is another part of the puzzle......

You have no need to explain, yet at the same time we wished to see your perspective...It certainly seems like perspectives differ slightly and a lot of what is said - has been said is only skimming the surface until this post..Thats not to say that anyone is lying..just that we all see from our vantage points..its life to do so..

'til later...

Take care,

K


oh and good luck for the interviews...

Edited by kewlcatkez, 28 February 2008 - 07:08 PM.

[sjean423]

Kind of like thos television shows, where they flash back to an incident from 2 different points of view ......

[zeta]

Quadman,

Hearing your side of the story definitely helps everyone understand better. I had no idea that your injury was complete. I know I wasn't trying to 'brag' on my abilities. I was just trying to say if you can do something do it instead of telling your wife your tired of waiting on her. That sounds completely rude to me. I apologize for anything I said that offened you. I was replying to her side of the story not yours.

I also wanted to say that I don't believe anyone was truely try ing to brag. Just telling your wife things that quads are capable of doing. Comments like that can be hurtful when we are only trying to help. This isn't the first time someone's said that to me directly or indirectly. Quad, para, complete, or incomplete we're all paddling up the same sh!# creek.

Zeta

[quadman]

Zeta,

Thanks for the response. However, I think the damage has already been done. Because of the comments on here, I think my wife basically thinks I am lazy and have not been doing all I can. Her trust for me went to zero. When someone is new to the paralyzed game they do not know how significant incomplete injuries are compared to complete. They also do not know that the slightest increase in function between 2 c6/c7 quads and differences in body type can make all the difference in the world. I personally know two quads back in Arizona that are my same level and have the same amount of independence. Both are married with caregivers. I would not consider them lazy.

I know you guys were trying to help...thanks for that.

Carl

[kewlcatkez]

quadman, on Feb 29 2008, 08:02 PM, said:

Zeta,

Thanks for the response. However, I think the damage has already been done. Because of the comments on here, I think my wife basically thinks I am lazy and have not been doing all I can. Her trust for me went to zero. When someone is new to the paralyzed game they do not know how significant incomplete injuries are compared to complete. They also do not know that the slightest increase in function between 2 c6/c7 quads and differences in body type can make all the difference in the world. I personally know two quads back in Arizona that are my same level and have the same amount of independence. Both are married with caregivers. I would not consider them lazy.

I know you guys were trying to help...thanks for that.

Carl

Hello again Quadman,

I can see why you are upset, but the advice was based on the account given. In it a picture of a man who was happy to be and is independent outside of the house was inn stark contrast to one who was unhappy to do anything for himself and so didn't inside of the house. I am NOT saying that this is true, but when we are only given that info (obviously your wife was upset so her account would reflect that) that is when the advice given was on the whole how it was.

Basically, it was an image of a man who was able to function at a higher level outside of the home than inside. We were also told of your telling the counsellor that you said that you would never had married if she hadn't agreed to be your full time carer...

After reading YOUR post, I can see more meat on the bones of the story and at least see your perspective of it. Yes it is very different being almost independent out in the work place than to the home. Plus you point out that moving across the country and marriage was on the understanding of certain things in terms of your care..

Ultimately, you paint a different picture than your wife does..its contrasting..I don't think that the comments of the other posters here actually ever said that you should do anything above your level of function. The key point was that we were led to believe ( rightly or wrongly~) that you functioned at different levels depending on where you were etc..and that things which you could do you refused to do and THAT is the basis which the comments you describe where made..If what you have said here is the actual facts of the situation, No one would expect you to function above your ability to do so..and if they did, then sod them..

Its always interesting to see both perspectives. I do hope that you and your wife work through your difficulties. Communications to each other is key..

Good luck and I hope that the interviews went well,

Take care,

K

[nomis]

Quadman, thanks for your full and clearly written post. Thanks go to you and your wife for being so open and trusting with us for which you deserve our respect.

I guess many of us here can relate to at least elements in the relationship issues that have raised here. Certainly I can.

I hope many positives can come from it, especially for you and your wife. I think we all can learn from this situation which typifies the stresses of SCI with marriage. No doubt it’s hit a few raw nerves among us.

I don’t think that “…the damage has been done.” All that has happened is that some issues have been thrown into the open. As far as you and your wife are concerned, we don’t count for anything. We are not a real part of your life.

You and your wife’s issues are laid out clearly before you and you have the opportunity to do something about it. If it was me, I’d be seeking quality marriage counselling – I don’t mean a “fix-it” counsellor (I don’t trust them), I mean a counsellor who will offer a platform to further clarify the issues and choices for the two of you to learn more about yourselves and your relationships. I see you as having a great opportunity.

Whatever happens, I wish you both well and hope that you pop back in here to share the forum with us. You have both offered us much.

[edlee]

As you said, Quadman, there are two sides and then there is the truth.

No one lies when they tell you what they believe to be true. People often confuse their own perception with reality.

I , certainly hope you and your wife can come to terms with your disagreement, but I still believe what I said before ( tho with limited information) is valid. You BOTH need to be happy.

If that isn't possible,,, then go your own ways. Like the old song says "I got along without you before I met you, I can get along without you now".

As for the money end of it, you both were apparantly solvent before you met. You're the financial analyst,,,,,,,. Even the most rational mind goes on holiday when love enters the picture.

Use your cost analysis skills on an emotional level,,,find the point at which both of your desires can be met with the least given up by the other side.

And remember,,, the first one who brings up leaving in place of bargaining is the one bullying.

I wish you luck AND love.
ed

[steveB.O.P]

you seem like a ery inteligent intelectual and when i read this as a debate you win hands down.
unfortunitly life is not an intelectual debate and being able to justify it or not the way your wife is feeling is actually the way she is feeling and her condition is just as real as your's is.
DEBATE 1 - RELATIONSHIP ???????

[cladivs]

Hi there, I completely understand what you are feeling as my husband is a parapalegic T12 L1, but as i always say to him and anyone who knows us "don't let the wheelchair fool you"!
I am not sure what your situation is but my husband works 2 jobs and i also work. I am also a devoted housewife when i get home but not becasue he is in a wheelchair but because those were my values from even before he became paralyzed (I am coming from an old fashioned Italian family). So I take pride in coming home cooking, cleaning and taking care of my husband. However, I do it because I want to not because I have to and when I see my husband getting too comfortable and expecting me to do things this is when I refresh his memory that I am his wife not his caretaker and I do it because I want to not becasue I have to. It is very important for him to know how to do things for himself too where he can, so from time to time he must do what he can. It is so important for him to be independant becasue if I do everything for him then he gets used to it AND THATS WHEN YOU HAVE CREATED A BRAT.
I do see my self as the primary caretaker when something goes wrong or when he goes to the doctors I like to be involved because at the end he is my life and no one will take care of him the way I do, but it is so important that he undertsands why you do it and works with you and take care of you too. You really need to have a deep discussion and communicate all your feelings and also ask yourself if you really are completely inlove with him becasue you are not doing him anygood if you are with him because of guilt, this is what you have to figure out.
And if your husbands does need a caretaker then you have to work with him and explain to him that maybe a parttime caretaker would be best to do the things he really cannot do and when she that you have no problem taking care of him as you are his wife but not in the demanding ways that he wants. At the end he has to undertstand where you are coming from

[Mike (c4-5) & Lorena]

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?

My goodness. Nobody can easily pull of working 24/7 for there spouce. That is just terrible that he equates love with cargiving. If anything, to show his love he should be willing to look his hardest to find you help. Most disabled peoplejust hate to train new help. It is difficult to replace someone who can do everything faster and exactly as is needed.

Your issue is feeling guilty. You love your husband and he loves you. But I promise your love will turn to anger if you dont find help. If he won't find help, you had better. If he runs your attendants away, let him stay in bed. You need to be direct. If he throws a statement at you conserning your love for him, throw it back. How can he be in love with you if he dose not care about your health. What would happen if you broke a leg, had a nervouse breakdown, who would care for him then? I am sorry but he needs a slap of reality. You need to stop feeling guilty and not forget to love yourself too. I think he has become to comfortable knowing that your guilt makes his life easy and your life hell.

If he dose love you, he would care for you as you care fior him. Love is a two way street.

[Quadman's Wife]

Hello Everyone,

I'm back after being gone for quite a while. I brought up in therapy how helpful all of you had been and my husband said he was glad I had your support.

Then, he searched and searched until he found this forum and proceeded to discredit all I had learned here. He has systematically tried to cut off anyone in my "real" life who I had confided in about my struggles.

He has filed for divorce. Please email me privately if you are willing to talk to me about what has happened since he came on this forum and wrote his beautiful rendition of what our life was really like.

I don't trust to have what I say or what you have to say to me public right now.

He would tell me that anything all of you said to me didn't apply because he doesn't depend on the government for disability, he has more serious of an injury, and he is a much higher functioning quadriplegic emotionally, socially and financially.

I disagree. I found your advice helpful.

Thanks.

[qbounce]

Quadman's Wife,
It seems to me there's more going on in your relationship that is beyond just having needed caregivers. . . .

I heard in both of you and your husband's posts an undertone of desperation and no meeting of the minds.

You were both in a power struggle over money, love, guilt, and being tired of it all. . . . the honeymoon was over!

Sorry things aren't working out the way you expected them to, but YOU picked HIM. What the hell??

Doesn't anyone believe in TRYING to make things work out beyond the span of their HONEYMOON anymore?

I can't pick sides in this mess, as I don't know either one of you. But it was certainly entertianing trying to help give advice to someone in obvious need who really should have been going to marriage counceling with her significant other months ago, instead of just posting here.

Good luck to you and yours all the same.

[milosh]

probably the biggest mistake made by beloved ones for us SCI chaps. i honestly think it's your fault.

i rarely let my girlfriend/partner do everything for me. i do have a nurse/carer for stuff like major hygiene tasks. also have part time assistant.

i think caring for his physical needs more than you'll care if he's an AB kills the relationship, sooner or later.

[cate]

Sorry to hear things have gone pearshape. Think you are in a losing battle, Look to your own life and retake it. Seems there are a lot of issues here. Do not appear that they will be resolved by either of you. So good luck for your future life
Cate

[milosh]

helping is not an issue, but doing something what apparently he can do or what you are not the only who can do is a huge issue.

[C Herod]

I have been with my husband since high school. We've been together for around 14 years. He was in an accident almost 2 years ago, and it has been hard. I know how you feel. We just finally got a caregiver about 3 months ago. She is there the first half of the day and it is such a big help. She cleans, cooks, and gives him a bath. We as wives can't be expected to do everything. Working, Cleaning, and taking care of kids. He is the one who is selfish to want you to do everything. That isn't fair to us wives. I was 8months pregnant with our daughter when my husband was injured. He had no rehab and came home the day before i gave birth. Words can't describe what that was like. My husband was so selfish at that time. I had to take care of him, breastfeed, up all night with a baby and him. OMG it was the worst time of my life. I don't know how I did it. I think it is important not to baby him. I was told that from the beginning that is the worst thing to do. Sometimes my husband can do more than he thinks he can. There has to be some balance. You are his wife not a caregiver, but I think part of being a wife is a lil' bit of a caregiver. I can't give you the right answer really. I stuggle with taking care of my kids and husband, working, being a caregiver myself. I really just wanted to let you know that your not alone. Just keep hanging in there. I always try to stay positive. God Bless!

Quadman's Wife, on Jan 29 2008, 01:02 AM, 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?

[Mike (c4-5) & Lorena]

Hi

I thought I had already wrote you but I guess not.

I love every part of my hubby. I think disabled men make the perfect husband. Sure it is difficult in its own way.

But having a relationship with a disabled man/woman is a two way streat. I am really doing tbhe physical job of two people. My husband always does everything he can do to help me and our kids. Even if it takes 100 times longer to do. Communication between us is huge. He listens very well to how I am feeling.

I know of to many relationships that broke up because the wife did everything. I would love to be my hubby's full time care giver, lover, cleaner, cooker, etc. It is just not realistic. I need breaks. I stronly recomened getting help in care giving. It is never easy training and counting on helpers buit it is insane not to get help. The helpers may never be as great as you. But if you get hurt, then what?

For your hubby it should be no problem. If he truelly cares he should be open to the idea. Does it not make sense?

The more rested you are, the more availiable you can be for other activities. Yes?

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?