Quadriplegic Lovers Relationship Troubles

129 thoughts on “Quadriplegic Lovers Relationship Troubles”

1. Caytlin, what an extraordinary young woman you are. Your strength courage and compassion are testament to your humility in love and commitment. Disability or not any man fortunate enough to capture your heart would be truly blessed indeed. I just want to reach through this screen and give you the biggest hug. I’m hard to impress, you pulled my heart right out of my chest and so get my gold star of the month hands down.

2. Thank you Graham. you are truly inspirational! I admire everything you have overcome and your joyous attitude! I stumbled across your website looking for information on reationships with quadriplegics. You have truly made me feel appreciated in so many ways. But I just want you to know, and others as well that I didn’t post to get sympathy or for others to praise me. I just want some advice that can help me as a caregiver, a lover, and a woman. Thank you so much for responding. Thank you for your help, taking the time to read my story and reply. You have brought more happiness in my life in one day than I have felt in a week. Thank You.

3. Caytlin, your letter is so touching and so heartbreaking at the same time. Your selfless compassion, faithful dedication, and tender love should not go unrecognized by the very man you deeply love. By taking the time to express your feelings here you have helped yourself. Please know that there are now many people who care about you after reading your letter. You are a wonderful, compassionate young woman. Please try and take some time every day for yourself as you continue to work through this heartache. Caytlin, you will be in my prayers tonight and every night after asking for peace to grow your heart and life.

4. As a paraplegic of more than 2 decades, I’ve been through the emotional wringer with both relationships and the massive shock and personal loss of what I was before the paralysis and after. I also developed cysts in my spinal cord a decade that left me in chronic pain and I had to go through it all over again. Still I count my blessings every day that I’m not a quadraplegic.

   Caytlin, you are an absolute SAINT!!! To an extent you remind me of my now ex-wife who never saw my wheelchair, only me, and to this day I’m amazed at the kindness and soft hearted women who can do that. I don’t think there are nearly as many men who could do the same. Still I see some patterns in your lives and mine when I was married.

   To an extent you’re an enabler for Chris. It’s clearly easier for him to not clean up after himself if he knows you’ll do it. Were he on his own (yeah, not possible for a quad, possible for me) this wouldn’t be an issue as he’d simply have to buck up and take care of himself as far as he is able. You say that he CAN clean up for himself – so bite the bullet and make him do it. Your relationship isn’t advanced by letting him roll all over you. An ultimatum here and there isn’t a bad thing – and maybe the cold shock of pointing out how his life would be so much worse without you in it, and that you’ll make sure that happens if he doesn’t meet you halfway might cause him to take you less for granted.

   Since you’re getting paid to be his primary caregiver, he’s treating you as an employee as well as a fiance. A tough situation to be sure. Just tell him he can’t have it both ways. I recognize the emotional turmoil that would cause, but you’re giving SO MUCH MORE than you’re getting at this point that I’m amazed you’re still with him. Keep in mind his health isn’t going to get better – as the years go by he’ll most likely have complications such as bedsores, autonomic dysreflexia, broken bones, etc. He may not be able to work. Can you live on your salary of taking care of him? Clearly it’s in BOTH of your interests for you to finish college, so you have something to fall back on, especially if your relationship dissolves.

   Also keep in mind that this guy was an elite athlete, soldier, and mentally considered himself one of the best physical specimens on the planet. All that was wiped out in a split second. He may APPEAR to have adapted, but deep down we always struggle with that, and the more athletic we were before, the worse that is because of our identification with our self worth being related to our body image and its capabilities. From elite to incapable of taking care of even the most basic functions overnight. It’s a very tough pill to swallow.

   Since you’ve “given up everything for him,” he’s taking you for granted. I did the same thing, although for many years I had the option of ending the relationship on my terms and being able to live on my own. Just how much does your relationship mean to him? A time out might be a good idea – give him a month off. No phone calls, no visits, no … nookie. ;-) See how that affects him. I had to do that in my life, and I was happier alone. He may feel the same as I did, or he may realize what an angel you are and how blessed he is to have you in his life. But SOMETHING has to change or you’re just going to be miserable while he sees you as basically a useful piece of furniture, to not sugarcoat things.

   I lost my wife when my paraplegia degraded into cysts in the spinal cord, which left me in severe chronic pain and the medications and pain made me crabby and unwilling to remain active because that HURT! The resulting change in my personality ended my marriage. He’s still early in adapting to his new world, and it sounds as if it’s not going as well as it was initially. He’ll eventually reach an equalibrium unless his health turns for the worse, in which case he’ll most likely end up more like me. Whether you can live with whatever “equalibrium” he settles on is up to you, but you need counseling as a couple, not as a paid caregiver and patient. He needs to see you as a woman, not as an employee.

   So please avoid the mistakes I made. Get counseling. See a qualified therapist – preferably one who had dealt with relationships between paralyzed and healthy individuals. And despite the horrible guilt and emotional pain I realize it would cause you, DON’T be afraid to walk away. We paralyzed folk can be tough to live with, and you sound unsure if that’s what you want for the rest of your life.

   Best wishes, Bret

5. Caytlin~ I too am in a relationship with a quadriplegic man. And when I read the part about not liking other women to know all about your fiance I can relate. I haven’t even discussed this with my partner as it is something out of his control. I wouldn’t want him to feel badly about this. But it is hard when there is only so many intimate things you can share and some of his regular cares are so intimate, like bathing, or even bowel care.

   I think one of the hard parts about being in a relationship with a quad is dealing with the other care givers. These people are a necessary part of life for our partners and a relief for us too. But in many ways our lives are bound to the schedules of having them period! My partner enjoys all of his care givers and their families and sometimes I feel how does this make me special.

6. I am in a relationship with a man who has ALS and I have ms. We are both wheelchair bound. We would like to become more intimate physically. Is there anyone who is able to share ways we can be closer in this way?

   Thanks,
   Robin

7. Robin, there is a lovely book that might be helpful to your and your sweetheart: Enabling Romance: A Guide to Love, Sex and Relationship for People with Disabilities (and the People who Care About Them). Authors: Ken Kroll and Erica Levy Klein. Publisher: No Limits Communications. It was updated in 2001 and is about 220 pages. A paperback copy costs about $15.95 (American dollars). The authors are a couple, and they cover just about every topic you can think of for coming up with solutions to creating a healthy relationship. It’s a good starting point for you two.
   Good luck and best wishes! ~Deb

8. First, to all the women who have posted here, I can feel you on many points and am glad to see I am not the only one.

   I have been dating my boyfriend who is a C4 quad for a few years now. Although I met him after his injury and accept him as he is, it is still hard to take how much time and energy is spent on his care and his activities. To this day he can get frustrated that I don’t put all his activities as a priority over my own. At first I wanted to be the “best girlfriend” and felt that this meant doing just that, putting his well being before mine. I was extremely busy since I was in graduate school and working. Still, putting him before me worked okay as we were not living together and I was only required to do it on the weekends I saw him. Everything changed once I moved in.

   Still busy with a demanding graduate program and work, I spent all of my free time doing what I could for him. We have daytime PCAs during weekdays, and they do morning and bowel care, allowing me to do what I need during the daytime. However, if I got out of work late all hell would break loose because I needed to be home shortly after the PCAs left to do caths. One time I even didn’t make it home in time to do the catheter, which resulted in a huge fight. I was constantly worried about getting home in time. Once I did get home there were errands, his activities, and dinner to be done. Homework was put off until late in the night, usually just about the time he wanted me to assist him with his bedtime routine.

   I felt I could say little about my growing fatigue and frustration at being more like another PCA rather than his girlfriend. If I did say something he would simply say it was my responsibility because I was the one living with him or that his problems far exceeded my own so I should not complain. Not really fighting for my own right to rest and personal time only made me resent him because I expected him to understand my feelings on his own. It was completely unhealthy for our relationship.

   I eventually realized it was best to just bite the bullet and be TRULY honest with him. It wasn’t easy, and many an argument was had over this topic. Unfortunately we even needed a little separation time to sort things out. In the end we learned how important it is to find balance between his needs and my own. He realizes more the amount of time and stress care giving entails and tries to be more understanding.

   Just like you said Caytlin, we have “typical” relationship problems as well, but those seem to be more easily resolved. His quadriplegia changed his active lifestyle, and it can make him bitter and angry at times. My living with him made it easy for him to take things out on me. That’s not okay though, and I let him know that. You shouldn’t let Chris do that to you either. It wasn’t until our separation that my boyfriend realized how much I do for him and how much he was taking me for granted. He made a resolution to “not be a jerk” (his words not mine). Although he still occasionally says hurtful things, they definitely are not as frequent or as terrible as they were before. He also realizes more quickly when he is taking his anger out on me, and he’ll change his reaction as much as possible. Again, I was lucky in this aspect.

   Caytlin, I feel our experiences are similar, and hope me sharing my story helps. There is no magic way for you to make Chris be more understanding or do more for himself. You standing up for yourself and doing what’s best for you is what’s most important though. If he can’t change a little for you with all that you’ve changed for him, then you should consider how worth it things are. I love my boyfriend 100% and was literally depressed to be without him during our separation, but I knew it was better than wearing myself out, being unhappy at giving up so much of myself, or taking any emotional abuse. Finding a solution is a process and we still are ironing out things, including what our future will be like once children are added into the equation with my now full time career and his evening/weekend care. Still we are happier than ever now that we are on the same page and are truly in it together, both making sacrifices for each other.

9. I am so glad I stubled accross this website. My husband was hurt in a hunting accident on Nov 30, 2009 so its just been a little over a year. We have two little boys one is four and the other is four months. We found out I was pregnant right before his injury. He is a C6-C7 quadriplegic with no use of his hands. i love my husband deeply and could not image being without him, but on the same note I am tired. I work full time and take care of a family. We have a aid that comes in at night to put him to bed, but his bowel program and everything else is left up to me. It is very hard having someone else in your house all the time. My husband was a police officer for 13 years prior to getting hurt. He was always the one who helped others and it is tough for him because he needs assistance with everything now. We have constant fights with UTI and him never feeling well, but we keep chugging along. We are never intimate anymore because I am just to tired, when I finally sit down i just fall asleep. It seems like we are all in the same boat here if anyone has any advice please share.

10. Back in 08 i had a bad heart attack which left me on a pension and shall we say just a teddy bear as far as love making and like most of the folks here that are disabled i get upset and think i am going to loose my partner. In fact i told her to leave and make a new life for herself. But she told me the love of a person is not about sex, that only a bonus of love… I have come good down stairs some what.

    Sometimes we are tested to the max as carer, i know i looked after my father-in-law who was a quadriplegic. But god bless you all and give you the strength to carry on Merry Christmas to you all

11. I am in a relationship with a C4 complete quadriplegic. Our relationship prior to the accident was not the best, in that he was quite a selfish man however, we did get along. Since his accident (8 months ago), I’ve stood by him, even when his family have not. It breaks my heart that his family have done nothing to help nor accept or learn anything about his injury and especialy his care needs. He won’t step up to the plate and say anything to his family, leaving me doing everything.

    I’ve asked for help but none comes. He does not participate in this relationship at all, will not share anything with me, speaks to me disrespectfully and does this in front of people. I do love him but I wonder if its more that I am staying because I feel guilty if I leave and he does not appreciate all that I do for him, no thank yous or any kind words. I’ve tried to talk about our relationship but he just agrees with whatever I want/say, no input or his thoughts. If this is a life with a quadriplegic, then for my own sanity I need out. Am I being selfish? How do people survive a relationship after a spinal cord injury?

    I am exhausted and given up so much of my life to help him. If our relationship was not good before, why is he making me feel guilty if I want to leave? Or how can I make him aware in trying a little more in our relationship, nothing else exists other than his injury, I have no feelings, no support and even when I’ve tried to talk to him about my feelings, he gets angry and turns it all around onto him. Am tried and need help.

12. Breaks my heart to hear of these relationship troubles, partly because I know how loving selfless and compassionate carer/girlfriend/wives are, and partly because I hear traits of me in the descriptions of the quadriplegic partner. Everybody has their bad days and I am guilty of grumbling at my girlfriend and the odd carer, through no fault of their own, I was just having a bad day. When that bad day becomes everyday it’s a big problem, you really have quite a battle on your hands.

    I can tell you one thing for sure Rainey. Whenever you meet a wheelchair user who is an asshole, 99% of the time you will come to find, they were an asshole before the wheelchair. Asshole may be too strong a word in this case but he and the relationship were not rock solid prior to quadriplegia. So ask yourself, if he didn’t have the accident, wasn’t in a wheelchair, would you leave? You didn’t put him in a wheelchair, he did. Don’t feel guilty for his mistakes or that he now needs extra care. He also needs to give extra care. What would your best friend want for you?

    Answer these and with or without you he is going to have to accept and deal with his disability and you leaving may just be the catalyst he needs to enact the changes. Often the best thing for us to do is also the hardest. That is especially true of selfless caring people. You sound like a lovely girl Rainey. Perhaps a break would be good for you both. Force him to find a solution to his personal care needs, give you a chance to live your own life and re-evaluate things. At least then if things change you have the choice to go back or not, if they don’t change or he won’t have you back, he may not have loved you as much as he says.

    Be your own best friend and do what’s best for you. After all that is really all you have control over. We will be here if you need support or just to talk.
    -Graham

13. I found this site months ago and found it helpful. I tried to show my C4 partner, but he’s not interested. My family is in crisis and I have my bags packed and am ready to leave the country and go back to New Zealand. My partner is angry at me all the time and anything that upsets him or changes in our lives I am the causes of.

    Last night he finally admitted that after 15 years in the chair he will never accept it and that he can’t understand or accept that the people close to him see him as a man and not “the chair”. He keeps saying he needs someone to talk to, but never makes that move, complacent, angry and in bed is where he would rather stay, while I am left to be reponsible for managing our lives, only to be told “thats not how I would do it”.

    Please can you give me any suggestions as to who or where I can turn to find him some help and someone to talk to before he destroys everything and everyone around him.
    Jo

14. Hi Jo, I remember your story. You would think me being a quadriplegic I’d advise you to stay, make excuses for him, tell you he’ll come good one day, and you’ll both live happily ever after. While that would be nice and we hope it happens, it is very unlikely it ever will.

    People say, “I don’t know how you do it (live with quadriplegia), I couldn’t, it would kill me.” It’s true, it’s not easy, and some simply aren’t strong enough to face each day as a quadriplegic. Living in Queensland Jo you could seek a counsellor or some assistance from these places.

    Disability Services Queensland, DSQ.
    http://www.disability.qld.gov.au/index.cfm
    Spinal Injuries Association, SIA.
    http://www.spinal.com.au/
    Spinal Outreach Team, SPOT.
    http://www.health.qld.gov.au/qscis/SPOT.asp

    If he won’t have a bar of it you might just have to cut your losses and leave. I know you have your daughter to consider. As I said last time, long term bed rest is destructive on many levels. He’s got to get out of that bed feel the sun on his face and have some fun. As I was just telling Rainey above, perhaps if you leave he will feel compelled to drag his sorry ass out of bed and get his personal care and life in order. If he doesn’t think you are worth it then obviously you are better off without him.

    I was feeling a bit sorry for myself and lonely today. I live alone. After writing to you I’ve decided to grab my camera, go out, and visit one of my local pubs. Have a great day guys.

15. Thanks Graham,
    I haven’t quite left yet, but am looking at renting a house for myself, if he wants to see me he will have to get out of bed and come visit. In the interim I no longer live in his bedroom, I live in the rest of the house, I go up to his room only to do what I have to and have told him I won’t be home 2 days a week, he is welcome to join me if he wishes.
    Hope your day was a good one.
    Jo

16. omg… i have the same problem with my better half… i just think we have more issues then that because hes still a ladies man. He’s a flirt and girls flirt back. Its no doubt in my mind that your fiance is being selfish. When my betterhalf is mad at me he does almost everything on his own, and when hes not i do everything for him. He takes me for granted everyday and i deal with him 24/7 no help!

17. Hi Stacey. Is your other half a quadriplegic? How long has it been for him since his injury? I’m still plodding along in my situation and feeling more like a cook/cleaner than anything else. He is in so much denial about his injury, refuses changes to the house, argues with me and his family about anything possible. Its like I’m living with Hitler and anything done without his prior consent is a nightmare. I long for peace, my back is not good, sleeping is always disturbed too. I’m having bowen therapy and seeing a kinesiologist to help me along. I still manage to see my friends and socialise which has been important however, I think I’m more on the edge of leaving him. His family are unsupportive of him (also in denial) and give me no assistance either in fact, the mother has never once asked do I need help or how I am travelling (she only pops in once every 8 or so days and never to help). I work part time and when home, I’m either washing, cooking, cleaning, organising things for him or myself. We are still thinking about (one day) in having a child together and, yes, selfish but I’m only thinking of me having a child and going off and living my life alone in raising this child. Being at an age where my biological clock is nearing to an end, I believe I could easily raise a child by myself … if I can cope with him being depressed and his unsupportive, negative family then I’d hope to think I could raise a child by myself and overall I need to think what I want in my journey of life. This wonderful existence called life has so many twists and turns, no wrongs, no rights – just decisions that feel right (at the time) for the individual. Has anyone out there had a baby with a man that is fully paralysed?

18. Hello Rainey,

    I am married to a C4 C5 quad and we have two wonderful boys. My husband has only been hurt for about a year and a half now. My one son is 5 and the other just turned a year in July. I was about 7 weeks pregnat when my husband broke his neck. I thank god eveyday for my boys we call the little one our miracle baby. Yes it is tough with the kids, i work full time and luckly my husband is very supportive. Yes he does have his times when he is depressed and hard on himself and me but its all worth it. I am not superwoman and I do need help so we have a aid that comes in to get him out of bed and give him a shower. Other than that i do bowel program and all of his other needs. I think the trick is a good support system. I am so blessed to have my parents to help out with the kids because childcare is so expensive and so is my husabands aid. Truth be told there are times when my life seems so overwhelming but then I look around and there are so many other people who are for lack of a better phrase worse off then us. We are still working on being intamate and finding time to ourselves. At the end of the day when the kids are asleep and my husband is in bed I am dead on my feet; 5am comes really quick once you close your eys lol. Also i am not really sure how to be intamate with him anymore. But one thing we do have is each other and at the end of the day we still love and support one another. Good luck and I hope this helps even if just a little.

19. I was reading some of the replies & I thought I’d share my experience. I had a girlfriend of 4 yrs. when I had my accident. We had 2 kids together. She would do everything for me. Bathe me, dress me, bring me food. The only thing I would do myself was eat. After 2 yrs, she began to seek other companionship. It could’ve been because of everything that was going on with me or it could’ve been something else. However, we split up & I had to move in with my mom. I didn’t want her to do all those things for me so I began doing them myself. It was hard & it would take a long time to get dressed, but it got easier & now I’m totally independent.

    What I’m saying is, she decided that she couldn’t take being with me anymore, for whatever reason, & she did what was best for her. I’m sure it was hard for her because she probably felt a lil guilty about how I would feel, but her doing what was best for her, pushed me to do what was best for me. We are still friends & she’s married & so am I but if we would have stayed together she would be miserable & I would still be sitting around waiting for someone to bathe me & dress me. Break ups are tough if you’re disabled or not. The results are the same. The person you call it quits with either sinks or swims. Do what’s best for you & don’t let pity stand in your way. Let me be clear though. I am in no way saying give up & leave because it’s hard. Fight until you have no more fight & then if it ain’t worth still trying to fight, it may be time to go. Oh yeah, one more thing; we are friends now, but it took a long time to get to that point. Good luck to you all.

20. Thanks everyone for your comments. I think its weighing more on the side of me leaving. Its difficult to stand by someone who wants to argue with everyone and does not want to help himself. Sadly, I have a lovely engagement ring on my finger, everytime I look at it, I feel sad for what could’ve been and the big question “why him and why me”. I believe things happen for a reason but how will I live with the guilt. I don’t have any family alive and it concerns me not having the proper support around to get me through this. Yes I’m feeling sorry for my fiance, sorry for me and how to get through this. Many people I met just don’t know how lucky they are.

21. I stumbled on to this site and found my wife Amy posted her feelings. I am a quadriplegic c6,c7 complete. I love my wife with all my hart. She is my wife and I do not want her to be my aid or nurse. I am not well-off and can not afford a 24 hour aid so my wife has to perform some aid for me. Ive bin a quadriplegic for a year and a half. I was a police officer and I am not used to sitting around , I become very depressed and it puts stress on are relationship. I feel less of a man do to the fact my hole life I have been the person that addresses danger and protects people not the one needing help. I also am unable to have intimate relations with my wife still working on this part. Communication communication communication. Always think of your self first. I am a lucky man.

22. Hi Gary, your wife is an incredible woman, and at 18 months you sound like you’re coping with quadriplegia quite well. It’s great that we can all share our feelings here and not be judged, all thanks to Caytlin for being brave enough to speak out. Reading the comments here and elsewhere on our website the tremendous strain personal care places on our partners becomes evident. It’s a whole different dynamic to that of paid carers. It can divide couples, and more than often, it does.

    Although more than willing, I refuse to allow my partners to do any of my regular personal care. Don’t wait for it to become your number one priority as she’s walking out the door, fix it now. Do not stop until you find a way to get more care hours. I’d be happy to talk with you about adjusting, dealing with depression and intimacy, on our site or in private Gary.

    I realize you guys are in the US. Have you heard of the Craig Hospital in Colorado? They are a leading SCI facility with the Denver Cheif of Police as a liason. Have a look at their website and phone, ask if they know how to gain more care hours in your state or put you onto someone who can. Utilize your communication skills.

23. WOW!!! I thought I was the only one. My now ex-husband got hurt back in August 2009 diving into a swimming pool. We only got divorced to help with his benefits, but I feel that at this rate divorce would have happened anyway. We too did not have the best relationship before he got hurt, and since he has been hurt it has changed things even more. We do have 3 daughters together, so that complicates things as well. I hate having to be a caregiver, that or this is never what I expected my marriage to be. I know people always tell me “whatever happened to in sickness and in health”, but I dont think people really understand the magnitude of being with someone that needs your help all of the time. Plus I think it is different when you get older and need each others help. If your like 60-70 and you have no kids to worry about. I am 33, still very young and we had our kids young. I always thought that our kids would get older then we would be able to do things that we never did because of having kids at a young age, but now his injury has changed everything. We are not intimate either, mostly because of me. I cannot get myself to be with him after I just got done doing everything for him, it actually makes me mad and upset at the same time. It has been 2 years since his injury, and I am actually looking to move out and just be by myself, but I do worry about what will happen to him since none of his family really care to help. It wasnt until a few months ago that they finally show up on the weekends to get him dressed in the morning. But thats it, and even then there are times I still end up doing it because they dont show up. I just done with being sad and mad all of the time. I never ever thought my life would be like this!!! I just want to be happy again.

24. If you are single and you love him cool. but reality is He needs you and you need to be needed, you can’t base a relationship on that. My wife worked for a quad who was obviously strong minded and smart. Its all they have. she has now left the mariage sneaks out from her parents house and left her 2 children to everone else to take care of. Is it not wrong to be a caregiver for money and enjoy love with him. be truthfull

25. hey tiff, you are not alone. i am a young mom to i am only 31 and my husband has been hurt since i was 29 and pregant with our second son. what i have learned since my husbands accident is how strong our love is. sometime things are tough and nothnig is every easy and it never was . my boys are 5 and 1 and they lookup to my husabnd, my 5 year lod was there through icu and rehab and he gets it. my husbands injury is our normal and we all accpet it. my husband tries everyday to become more independant by addaptive devices and he is going for his lience. strong and smart minded he is and always was. he one goal in rehab was to be able to feed our son when he was born and him adn his therpist made that goal possiable. you need help . you can not do it alone. you guys cant get a helper for you . we have an aid that comes in and gets my husband out of bed and showers him and gets him back in at night. you need support to because is is very hard especilly with little ones. my husband family dosnt help much either but that s ok because he wants his privacy to. so much has already been taken from him so if he can keep his persoanl care seperate that cool. look if you ever want to talk or just vent email maybe talking can help and nobody really gets it unless they themselves are in the same situation. it sounds like we have alot in common. maybe something we have learned i could share with you. god only knows how much i have learned from others in the past year :)

26. This is in response to “Family is messed up” and the comment you made about is it not wrong to be a caregiver for money and enjoy love with him? I struggle with this question myself as I am a caregiver to a man I love very much. But with my partner work is work and play is play. During my paid working hours we keep things about his cares directly about his cares. He has full control then and I respect that. We keep it this way to ensure he gets great care and I feel like I am not taking advantage of anything. Truly it sometimes can be quite the opposite meaning I sometimes put in extra hours without pay just because I really do care about him I try to be careful not to be taken advantage of and have him also rely on other caregivers. But truth is I believe nobody can give him the care that I can because I can really read his needs and he can be himself and hold nothing back. He can just let it be….
    Now for your other issue~~your wife fell in love with the man she cares for and it ruined your marriage. Perhaps the marriage was in jeopardy before she began working with him? In my experience a marriage can only be broken or open to an affair, of any kind, if it is in bad shape beforehand. Maybe you don’t want to hear it, and I am sure it wasn’t entirely your fault, but think about that….was it broken already?

27. WOW – how very helpful this site has been in the few hours I have spent browsing it. You see, I am at my wits end. I am a healthy 29 year old woman who fell so deeply inlove with my honeyluv. He has the most brilliant mind and the most beautiful traits and god, I love him. But he is so angry. Not at me, I just get it thrown in my direction. He was in a bike accident 7 years ago and he has been in wheelchair ever since then, paralyzed from the rib cage down. I have been best childhood friends with his two brothers, but because he is so much older than us, I never even knew he existed. And now – fate would have it – we are together. I had so much to get use to: the catheter, the blue pill sex and pee, his temper, and yes, his meanness. How can someone so goddamn beautiful and sweet and loving flip in an instant and say such mean things. I get what one of the ladies said above, i also hear alot ‘ that isnt the way i would do it’. I struggle to find activities for us to do together as a couple. We have a pretty good sex life, even though everything has to be planned and he is always wanting to touch me – which I love. But I feel disconnected when he is so mean. I dont want to use bipolar as a word here, but I am starting to wonder. I am giving up alot to be with him, but he is sooo worth it. I love him regardless. I sometimes forget about the chair and I try to be everything he needs, but I guess I am asking advice as to what I can do to better cope with his meanness? And, can he have kids? Thanks for reading my post. I can see that I will come here more often… Nanna, from South Africa

28. My best advice for anyone subjected to violence, meanness or abuse in any form, is to move away. Never provoke the situation, simply move away. Often just a few steps back is enough to have him asking why are you over there? Tell him he makes you feel hurt and afraid. No man that cares about you likes to hear that. He should simmer down and be passive. Repeat the proccess and hopefully he will learn quickly. Men are trainable, actions are more effective than words.

    As a quadriplegic, I have my share of bad days like anyone does, not a big deal. When those bad days become everyday, and moving away doesn’t work, it’s a real problem. In that case get up and leave the room altogether for 10-15min. May frustrate the hell out of him for awhile but he has to learn to deal with it himself or lose you.

    Failing this technique you could try kissing him. It’s hard to stay angry when the woman you love is kissing you all over. But be careful, this places you in striking distance. As a WRD Ambassadoor physical violence is something I will not tollerate. Any loved one strikes me and I’m gone. I make that very clear in my relationships and I have never been struck. Spanked, bitten, squeezed, poked and pounced on lol, but never struck.

    So he is what, 40yo 7yrs in a wheelchair? The fact you guys have an active sex life is promising. It is quite likely you will be able to have children together. If he can ejaculate the natural way I still strongly advise you both visit a fertility clinic to ensure you are giving your child the best possible start in life you can.

29. i stumbled upon this site today and was really shocked it existed. and there is alot of relationship discussions here and i had some questions. how would a guy in a wheelchair get a girlfriend in the first place? i’m a paraplegic and i always get shot down by women for being in a wheelchair. i guess what i’m saying is. how can i get a girl i like to see me as, well… me?

30. Hi Nich, this post is about “Quadriplegic Lovers Relationship Troubles” please ask your dating questions in our forum. We can answer you better there.

31. I would like to respond to Nich’s question. I was one of that girls who loved the outdoors guy, you know, the one who can pick you op and swing you in his arms, that guy who carries the heavy (and not so heavy) stuff around for you, the defender of your virtue. I was all about being active and playing hide and seek in the forest and today, I am with a beautiful man in a wheelchair. If you asked me a few years ago if I would date a guy in a wheelchair, selfish little me would have said no. But then, i didnt know my guy back then. You see, life has all kinds of funny twists and turns. Turns out I did know my guy back then, well sort off! His twin brothers was my best childhood friends and I have been in their house many times, he lived a block away. never knew he existed, as he is older than us and had left home already. And now, almost twenty years later, we found each other.

    You ask how can you get a girlfriend? I don’t have an easy ‘Here’s How; answer. What draw me to my bf? He has a brilliant mind, he understands me, he doesn’t tolerate my BS tantrums and yet, he did it with kindness. Sure, I am carrying the heavy stuff, we ain’t playing in the forest (well, he parks at the top of forest and lets me run around like a little kid)and I am probably the defender of the home, but I like it. Just call me Princess of Warrior!!! He makes me feel loved and appreciated and he taught me to value the small things in life.

    So I guess my advice is this: Dont go looking just to have a ‘someone’. Cause that is what you will get: Just a random someone, who doesn’t have the same interests as you and same values or needs and then it will be a mess. First figure out what you really want from a relationship and then, you place yourself in situations to be around THAT kind of woman. Dating a man in a wheelchair takes a lot. But if you are really lucky, which good people usually tend to be, you wont have to go looking for your big love, they will find you. Just ask me, I didnt loose the freedom of dating someone with working legs, I got an extra set of wheels free!! Good luck!

32. My partner and I have known each other for 12 years, we met just before his accident, and were about to get together when he had his car crash, he is tetraplegic we finally got together in January of this year, and as far as his care is concerned, I do none of it unless I want to, he currently has a pressure sore, so is confined to bed, so, I help him eat, and drink, cut his hair for him, when he wants and give him a shave as he finds that hard when in bed, but hates having a beard. He has carers twice a day, and nurses to help with bowel care and change catheter when required, three mornings a week, I do help him shower, because we prefer it that way, but honestly, even if i did get allowances for his care, he would never expect it of me, as he always maintains, I am his girlfriend, not his nurse, or carer, and we currently don’t live together, because he wants me to be quite sure I can cope with our relationship. I love him, totally and utterly, and for me he is the same man as he was when we first met, he protects me, makes me laugh, we have a full, and amazing sex life and he can handle me on a bad day too! My advice would have to be HONESTY with yourself, and your partner, if you feel this way now, how are you going to feel in 10 years? And the answer is you will resent him, feel taken for granted, if he is able to clear up a certain amount of his own mess, he damn well should! You are his girlfriend, first and foremost, and if he doesn’t want to lose you, he will try and be more reasonable, if not, then , get counselling, even if you go alone to start with but go, even if it just teaches you to be stronger and gives you the ability to be less of a pushover, no offence!

33. hi, i have been married to a quadraplegic for six years. he broke his neck 2 yrs after we got married. he is a c6 c7 quad. i am 24 and he is 29. the first year and a half was really diffult. i had to do everything. i had to quit work to take care of him. feed him, dress him, bathe him, put him in the bed. now my husband is 6’4 and 270 lbs. im 5’6 and 130 lbs, so he is much bigger than me, so a lot of the physical work was really hard for me. i stayed so depressed to begin with because he wouldnt do anything for himself. and it didnt help that i have an enabling mother in law that i coulnt do anything right by. she would tell him that i wasnt good enough for him and she would tell me that i was mean and there was a special place in hell for people like me. but somehow God helped me to get through it all and hang in there. i absolutely adore my husband, and his accident has only brought us closer. he still struggles with depression. but about 2yrs ago i decided it was time for him to learn to do for himself and i stopped everything. he stayed mad at me, and he made life hell for me for a few weeks. but i noticed him doing more and more, and one day after he gave himself a shower, he came out smiling and said “i did it”. it was the first step for him. now i dont have to do anything for him. he is amazing. i have gone back to work now, and we are adopting three children and he stays home to take care of them. he is an inspiration. the only trouble we have now is the bedroom, we still havent figuredo out how to have to have sex. so if anyone has any advice please let me know.

34. I LOVED IT

35. Hi!
    Iam a 26year old Lady from South Africa, involved with a paraglegic man who is 34years now, we hav been inlove for the past 5years and it has neva been easy, I totally feel better to read all of your letters because i can c that i am not alone, although my man can help around the house and i beleive that he really truely love me, but recently he has been very jealouse of me when i go out, he hates it when i hav to go somewher even if its just for 30minutes or to work, he will start complaining, he wants me to be around him 24/7, & he sometimes gets angry & keep quite for a long time & when i ask he will say its nothing, some of those things can be a turn off in a relationship, because when i met him he was so full of live and very confident about himself and to be honest those things are some of the things that made me love him, but now when he starts to be this insecure and jealous person, its a little bit irritating & i do not want to loose him, because he makes me happy & i truelly really love him.

36. Alicia i think thats faboulous my husband is a c6-c7 quad also. he does alot for himself but if you dont mind me asking does he do his own bowel program and put himeself in the shower or do you assit him. we are always looking for more way to be independat so if you know any that would be amamzing :0 my husband is actully going for his drivers license this month we are super excited about that. my husband has been hurt for two years now so everything is brandnew and as far as our sexlife we are in the same boat :(

37. Hi my husband is currently a c2-C4 sci.MVA in 2010 so fairly new.He has good upper body strength,transfers in and out off bed indepndently, i help somewhat but i do let whatever he can do for himself i let him.I wash and dress his bottom half in bed. He gets into the chair and i do his top half in the bathroom. He has limited functions in his hands.And i must say some days are overwhelming. But overall he’s in good spirits. We have a aid from 8a-3p. I work 7-3,so the rest of day is left up to me. We cath every 4hrs and we do battle recurrent UTI’s.Initimacy is not a issue right now. We have two kids 10 and 3 and its does help to have a good support system when it comes to the kids.Initamcy hasnt been a issue yet. We’re very affectionate towards one another infact i think the accident made us closer. I sit facing him in his weelchair so that my breasts are in his face, we cuddle every chance we get, oral sex is definitely in our relationship, and you”ll do other things to make sure that part of your isnt somewhat gone.Communication is the key ,we talk alot. I read a story on a website about wheelchairs and initmacy and it was very informative. We cant plan the future,we handle everything as it comes.

38. Hi, can i first start by saying what an inspiration you are caytlin to all women out there who ‘see past the chair’ and follow thier heart when it comes to love!
    I am 21 years old and paraplegic – T2. I met the girl of my dreams over 1year and 3months ago at university, and we both have admitted to each other that we are the best thing that has happened to one another by far! We have our days of excessive arguing and bad statements thrown at one another but we make up straight away and everything feels amazing again! (arguments make the relationship more helathy to show how much you actually love the person) however, From reading your story, it reminds me of my own girlfriend very much and by this i have realised the amount she does for me, even though i am fairly active and independant in many ways, the support she offers is always priceless and straight from the heart! by reading you story i have suddenly thought i love my girlfriend not only for what she does for me but the decision she has made to not care what others may think and still be with me regardless of my wheelchair and love me unconditionally!
    I admire your decision in being with him and making so many sacrifices for him! However your relationship shouldnt be the reason for you to personally under-achieve or excel in any way! You shouldnt feel un-appreciated because women with your kind of characteristics would be welcomed by any man! I hope he recognises what a wonderful woman he has and appreciates you every day!!!

39. Bret, not sure if you will see my comment but i just wanted to ask you something. My husband is a t4 incomplete quad for 21 years and we have been married for 19. The first ten years were decent then he injured himself again and has chronic pain now, he is on meds now for the breakthrough pain buthe is different now,and had no sex in 9 years. I realize your marriage filed due to simular circumstances but i wondered if you were able to take any meds to alture the difference from the side effects of the pain control. I am NOT leaving my hubby ilove him dearly but i WANT intimacy in our marriage.

40. Are you able to read my attached document (pdf)? It tells of my unconditional love for somebody extra-ordinary.

41. Dear All

    I am contemplating dating a quadriplegic and I have no idea what I am in for… I dont see him as a chair at all and we have a very nice mental connection…. can you help me with understanding what I should consider that is beyond the realm of a relationship with an able bodied person. Thank you

42. Hi Freda, you’ll find alot of great relationship info on this website. Being open and honest is very important, don’t be afraid to ask questions, have patience and enjoy yourselves.

43. I can’t believe I came across this website. I am deeply in love with a quadriplegic c-4 who will be moving in with me in a couple of months. I have only taken care of him a few times for a few days at a time. I look forward to being able to be with him everyday, but I am afraid after reading all the hard times I have read about on this thread. Thank you everyone for sharing your most intimate stories with us all, although it does not scare me away. He is a stubborn man, but I am a more stubborn woman and won’t put up with bullshit! He has seen that side of me and says it is exactly what he needs. I hope he maintains that optimism! LOL At first he tried to push me away, it was some kind f test that I did not fall for. I guess I passed. I always get questions from him like “are you sure you can handle it” and “are you sure you know what you’re getting yourself into” and my favorite, “you really do love me, don’t you”??? He has not had the best life and he was always getting himself into trouble. He doesn’t eat right and does things he shouldn’t, like smoke and drink too much, not often, but smoking is out of the question and drinking every day is too. When I ask him one of the same questions “Are you sure you know what you’re getting yourself into?”, he says “I love you and I know you will only do what’s best for me, so yes I can handle it!” God Bless you all and I’ll keep you all in my prayers! XOXO <3

44. Graham, I love all your responses! You are brutally and sincerely honest!

45. Thank-you Babygirl619, welcome to the community.

46. I have been married to a C5/6 quad for almost 14 years. The beginning was easy. He was optomistic and easy to be around. When people met him, they would always comment on his easy going attitude. People would also tell me all the same things mentioned on this thread already – saint, he’s so lucky to have me, they could never do it, and so on. We have 2 beautiful children from in vitro (ages 5 and 9). I had some horrifice experiences with sex prior to reuinting with my husband (we sort of dated when he was able bodied). In my late teens and early 20’s, I was raped, assualted because I wouldn’t have sex with a guy, got cheated on more than once. All of these experiences led me to believe that there are many more important things to a relationship than sex. We never had a very active sex life but over the last 5 years, its non exsistent. He had 2 hospitalizations for flap surgeries and was out of state. We visited as often as we could but I certainly enjoyed the break from being woken up by caregivers, going to be when I wanted to, not having him come thru the door with exhaustion and depressed energy that fills the home. He has been asking our kids to do things for him as soon as they are able and got upset with our son (4 years old) because our son didn’t want to do it. He and I have been on a downward spiral since 2004 and I am SPENT. I talked to him about the idea of an open marriage as I am a healthy woman and not a 23 year old girl anymore. Ive had therapy and dealt with the issues around my own sexuality. It was of course hard for him to discuss at first, but I was ready for divorce. I felt like he was sucking the life out of me. I have an amazing support system. My parents were married until the day my Dad died; my husband’s parents had a nasty divorce that has scarred him and his siblings for life. He wants a divorce because he can’t bear the thought of an open marriage. I can’t blame him, but if the tables were turned, I would want him to get his needs met. My intention is not to find a replacement husband, just meet some needs that have been long neglected. I know some of you will think I am a wretched person – believe me, I have already done that and I am in a vulnerable state right now. I am begging for people to not post how horrible I am. My husband believes that if we divorced, he would be fine in an apartment alone (with morning care and someone to put him to bed at night.) I believe he would need an overnight caregiver and he thinks that is ridiculous. I feel that over time he has become more disabled – and the pain, oh the pain is relentless – yet his reality is not in line with his opinion of his capabilities. I have asked if we can just live together as a family but his anger is all directed at me, always. Please help a mama in crisis. Thanks

47. First of all- you are not horrible. You have tried, bent over backwards and have done what needed to be done. Im not licensed or an expert, Im just giving my opinion and that is to step back for awhile. I do not let anyone devalue me, harrass me and the slightest hint of ongoing anger or violence will make me flee. If he wasnt in the chair what would you do??
    Im sure you will get more feedback but you need to keep yourself and your children in mind. These are formative years for them.

48. Amy, I’m glad you had the decency to talk to him about these things rather than having an affair behind his back, like so many others, hoping to not get caught. Unfortunately for you however, when a husband hears the words “open marriage” they actually hear “it’s over.” You wanted a divorce, he wants a divorce, get a divorce.

    You will be free to date and have sex with whoever you wish. The children will be free of the opression. And whether his care needs are met or not will no longer be your problem. If he still wants to be involvecd in the childrens lives he can be.

    Don’t get me wrong, I would like to say he’ll turn into a nymphomaniac ray of sunshine overnight, the children will do nothing but play, and you will all live happily ever after. However the chances of that happening are slim to none. About how old are you? Stability is very important for young children but so is happiness. You owe it to yourself and the children to be happy.

49. Thank you so much for your reply. We have discussed divorce frequently but I am afraid for what will happen with shared custody when the kids spend time with him. My 9 year old daughter had an angry outburst and said that he always needs help and she is sick of it. This would only be intensified if there’s not a caregiver around. I worry that they would be called upon to do so much. I also would not want to withhold custody as they are very close to him and he’s commented more than once that if it weren’t for them, he would commit suicide. He is so depressed, frustrated and in so much pain all the time. I never felt like I was sacrificing my happiness until recently. Can I live this way? I’m 40 and he’s 41.

    What has your experience of custody arrangements when one of the parents is a quad? Not a simple question, I know. Just wondering.

    As a side note we met with our therapist last night and I have never had any relationship with friends, family, etc where someone always assumed the worst about me and he does. He had a horrible childhood with parents who hated each other for a long time before they divorced. I guess our childhoods are always with us. I’m nothing like his mom. I feel like our family is already so broken and everyone is getting cut on the pieces. I am so tired.
    Thanks for the outlet and your valuable input.
    Amy

50. Amy,

    my parents were AB but married others multiple times after the divorce and I have to say it was the best thing that ever happened to me. I have 2 wonderful step brothers, a step sister and a step mother who loves me unconditionally. As far as the suicide “card”. Been there and done that one too. You cannot make another person happy and I get so upset when that one is played. It’s his choice and I can tell you that no matter what happens you will go on because you are strong. Be strong for yourself and your children. It sounds like he has issues far beyond what you can fix. Just my two cents worth. Please keep me posted. You are young and you are entitled to a happy life as are your children. Everyine is here for you.

51. So an update from yesterday… I had texted him about our daughter’s comment about him needing so much help and her frustration. I am taking her to our counselor today at 4:00. When I told her I made the appointment, she cried and thanked me and said that she’s having a hard time right now. Bless her heart. I give her full permission to complain about my shortcomings and if there’s something that can I can improve on, please let me know. When my husband got home last evening the kids were eating. He pulled up to the kitchen counter and asked one of them to get him some chips and salsa. I said no immediately and that I would do it. I told him how sad it was that he didn’t take her feelings into consideration. Our therapist shared with me that he is pretty set on divorce. He has very unrealistic expectations of what he would need if he were on his own. We got together very shortly after his injurty and he was sharing an apartment with her until we got married. He thinks I’m insane for thinking that he needs an overnight caregiver when he has the kids would spend the night with him, regardless of the fact that when he has AD it is usually during the night. And he thinks I’m controlling for feeling the need to know who the caregiver is…not just anyone off the street looking for work. All of this makes my head hurt and I don’t feel that I would ever be free of worrying about the kids wellbeing when he would have them. I feel like everyone loses if we stay together or divorce. I never imagined my life ending up like this.

52. Wow, Amy, I felt that I must reply, my partner and his ex-wife went through a similarly bad split, she abusing him, by having affair after affair, not letting the carer’s into the house, not accepting that she was as responsible for her own unhappiness, they finally split after seven years of discord, she leaving to live with another man, leaving behind the house, the children and total domestic chaos in her wake. You can only do what is right for you and for the children, which you are clearly trying your hardest to do, regardless of his disability, he is a grown up, and will work out what his actual care needs are soon enough.All of this can be settled with help, and it doesn’t have to be your brain exploding with dealing with it all. I understand where your daughter is coming from, my partners children went through similar feelings, not because he expected too much of them, but because his ex wife refused to do anything, not just for him, but also, housework, any interaction with the children any, well anything really, out with her friends, or new boyfriends, shopping whatever, sadly, for her anyway, the children now hate her, for her neglect of them as well as their father, and it has scared all of them deeply, my partner worries that i will change my mind further down the road, and the kids had a hard time trusting me. you can put your life back together, and so can he, you should feel no guilt, you tried, it’s all any of us can do.

53. Ok-Kitten, I retread your response and hope you were sharing your partners experience and I see very few similarities to my life. We agreed to an open marriage and while it would take a woman with experience to have sex with him, my hope was that he could find a friend to spend time with that had similar interests. We have grown apart in so many ways. We are actually really good coparents and back each other up even when we are having discord. He hit on his weekend caregiver after me witnessing them flirting for 7 years. She promptly quit and was offended that he asked. I think he lost any confidence at that point.
    I want to be very clear that we may argue but there is no abuse of anyone. He can have a sharp tongue but I am a tough chick. We treat his caregivers very well. In his 18 years of paralysis he has only had 3 weekday caregivers. Weekends are tricky because it’s not a ton of time and people’s lives change. I would never withhold care from him. I think part of his disconnect from reality is that I have overcompensated without complaint and he thinks I have it so easy. I honestly cannot understand what it’s like to be in his body yet I still have tons of compassion. Ideally, I’d like to have an emotional divorce and shed the expectations of husband and wife and work on rebuilding a friendship while still being a functioning family. I love him with all my heart, just not romantically. I cannot fathom leaving my home and family for any man. We had lots of issues prior to the open marriage.
    I’m glad your partner is free of the witch and found you. I wish you the best.

54. Wow, thanks Amy, I do hope you don’t think I was making comparisons, with your life and ours, I was relaying the experience, and what was learned, I have to say though that I have nothing but instant dislike for the quitting carer, you can’t flirt with a man for that many years then come over all shocked and horrified when he moves to the next level, sad, but true, pity flirting, leaves a nasty taste! Have you and your husband discussed the possibility of you remaining there, not in a marriage in the accepted terms, and perhaps with more carer assistance so he realises how much you actually do for him? Sadly my partner is not quite free…yet, but thats a whole other story ;-D

55. And, having clicked enter, I suddenly realised that I had left out something I felt it was necessary to share, about what you said about it taking experience to have sex with him, this is not the case, for my self and my partner, it was a natural thing, he and his wife had not had sex since the injury, I was his first, and in a sense he mine! It takes a little more effort, sure, but I enjoy every moment, and it’s always special, for both of us, he says its not like it was before the injury, but still a very memorable, and enjoyable experience for him, so with the right woman, for him, there is no reason it can’t be for both party’s.And Amy, please don’t think I mean you are not the right woman, maybe you are, still, just the stresses of life have got in the way, before you both realised. We have our bad days, he worries that I might decide it’s not what I want, I know it is, and we are working on that problem, right now.

56. Kitten,

    regarding experience.. I have to say that experience isnt necessary. What I found, being the AB one, was that communication was so so important. He had been w others pre and post accident and we were, are, and continue to be friends- although no longer lovers in a sexual way. There were things I needed to know and once we figured things out…. Awesome, amazing, the best Ive ever had. So, Im not sure experience is the key. I think it is communication. (im smiling as I type this because communication can be sooo much fun)

57. Amy, a girl of nine should never have to make grown-up decisions nor fear being used as a pawn between parents. You know it’s wrong. He wants to be independent so let him. It might be all he needs. You seem to be the only one holding everyone back. It’s like, you want to have your cake and eat it too. Open marriages are illegal, it’s called divorce in most states as far as I know. You said part of the problem is his messed up childhood but look at the examples you are setting your own children. At your age I think it selfish to place your sexual desires above the well being of any child. In any case it is never ok. I suggest you pack the kids up and take a holiday. Tell Mr. Independent he has a week to move out.

58. Wow Graham, quite a different tone from when you respected my asking for the open marriage. It’s not illegal, I am highly offended to be called selfish for getting my needs met. I have been selfless for so long in our marriage and as I’ve said I was looking for anything to keep from losing my mind and stay together as a family.

    Not sure how you see my daughter being used as a pawn. We don’t do that. Our problems are between my husband and myself.

    As far as him just moving out, it’s not that simple. We will need to sell our house. Plus I think we need to discuss the possibility of separating for a while and see what his needs actually are if he were to live alone.

    My initial question was if you had any experience with custody when one spouse is a quad. Any ideas?

59. Amy…

    you are very defensive, Graham said that he respected you for having the decency to talk about it with him, or word’s to that effect, and as far as selling the house goes, with the right people helping there is, I am sure a way to make sure your husband has the accommodation arranged to suit his needs, and while i am sure it’s unintentional, the children are in the middle of all this, and prevaricating about whether you are going to divorce , or whatever,helps none of you, the longer this drags on, the worse it will become for all of you to either try to sort out your relationship, or remain on civil terms if you do divorce. this problem as far as I can see, is based around your resentment of him on behalf of yourself, and you not having the life you think you should have, and your husband failing to accept that he is asking more of both yourself and your children, perhaps he doesn’t realise he is doing it, but you said sometimes, when he is away in hospital it’s nice to not have carer’s coming in etc, and trust me, i feel you on that one, you also said his “gloomy” attitude effects everyone, so you are both feeding off each other’s depression, i could go on, and on, but what’s the point, you and he are the grown ups here, you need to work out whats best for all of you, most importantly the children though, so they can continue to have a healthy relationship, with both their parents.

60. Amy,
    I lived with and loved a C4 quad for 18 months, he was always angry and depressed. The people on this site particularly Graham gave me invaluable advice and comments that if I had listened to when given would have saved me, my children and my partner alot of heartache. Staying cost me my children, they ended up in state care, it cost me my sanity for a while and I was trapped in a bedroom meeting the constant needs and demands made of me. Everytime I wanted to leave he would employ carers that were absolutely inappropriate, including an alcoholic that brought her booze to work with her. I had to understand that he was a grown up and was responsible for his own choices, I did not and would not of employed the people he did. Expecting children to meet his demands and care needs IS putting the children in the middle.
    I can only repeat Graham’s words grow up, take care of yourself and your kids. Sex is not the be all and end all of a relationship. I still talk to my ex, I returned to my own country and I can assure you none of it was easy. I went from not having 5 minutes in a day to having 24 hours to fill, I worry about him often. When I left I had my clothes and a computer. 6 months later life is slowly getting better, my daughter is starting to talk to me for the first time in over 12 months. Life will never be the same, but it is MY life.
    Jo

61. Amy,
    Please listen and hear from those who have posted…
    I know you mentioned your daughter seeing a therapist. Are you also able to discuss your perceptions with one? I only ask because it can be invaluable to have an unbiased second look at things from an outside perspective. As for quads and custody- I have a close friend who is a parent and he makes a wonderful awesome amazing parent. I concur with those who have posted above. Sex is not and should not be the primary driver of a healthy relationship. Your spouse is the childrens father and in a divorce no child should ever ever hear one parent speak or act negatively about another. The actions of both parties will impact their lives and memories forever, and how they themselves have relationships. You and your husband are the adults in the situation so please, for their sakes if nothing else, behave as adults.In life we cant always have our cake and eat it too…

62. Don’t confuse respect with approval. I do respect that you talked with your husband about these things rather than having an affair behind his back. That does not mean I approve of open marriages. Extra-marital sex is illegal in jurisdictions where adultery is illegal, regardless of whether the partner(s) have given their consent. You keep saying your needs but what about your children’s needs.

    Long term studies have shown in western and eastern culture children raised in open marriages and those of multiple marriages have greater difficulty forming and keeping long term relationships throughout their life. More than ever legal systems recognize the importance of stability in a child’s up-bringing. A tower built on concrete will stand longer and stronger than one built on shifting sand.

    A court of law will favor a loyal quadriplegic father over an adulterous mother. I know there is much more to your situation and you may not have committed adultery. Also, I’m not judging you, just informing you to the best of my knowledge. What I, and I believe others here are telling you is, the moment any adult puts their needs above that of a child it is selfish. Again, we’re not saying you are selfish. Only that to act that way would be selfish.

    In the last 25 years or so there has been a move away from the belief that “children are best placed with the mother.” It’s not 50/50 yet but fathers are greater recognized as capable and important a parent as the mother, especially when it comes to raising boys. Today fathers have a much more hands on approach to parenting. Gone are the days when you got a phone call at the pub, “It’s a boy!” Children raised in homes where one or both parents have an acute disability like quadriplegia prove more charitable tolerant and resilient.

    Many children are given chores to perform. In a family court of law activities such as setting the table or fetching a drink are considered chores and as such matter little. Now if it were assistance with bathing or toileting it certainly would be considered an inappropriate activity. In custody arrangements who can best provide stability, personal safety, and provisioning (food clothing shelter) are major considerations. The fact he is a quadriplegic, has a “permanent acute disability” only becomes a significant factor when it causes inappropriate activities to be placed upon the child.

    If you want my personal opinion, I would be pretty grumpy if my wife ever suggested an open marriage. It would turn me off sex big time. Despite his initial agreeance it seems he resents you for it. I am a bit old fashioned. I hold honesty fidelity and valor very high in any relationship. Given these three there are never trust or jealousy issues. It makes for a very open relationship in the literal sense. I also never start a new relationship until I’ve ended the old one. So while it goes against me to suggest divorce what is best for the children must come first.

63. I guess I haven’t made it abundantly clear that all of the things I have done have been to keep my family in tact. So keep saying my actions are selfish but it’s absolutely the opposite. My husband and a have decided to have an emotional divorce and shed the responsibilities of husband and wife so we can be good friends, parent together anh have love an we can. We both love each other but there’s no romantic love. It may not be perfect but we are gonna work our hardest for the kids. Even 50% custody is not enough time for either one of us to spend with the kids. They are amazing, compassionate, funny people who need us and we want to do what’s best by them. There’s not much arguing in our home-more flatlining. I see our kids as happy, healthy and well adjusted kids.
    Peace out
    Amy

64. You did make it clear, and I know I said that unless you try and find a way back from this now, either with counselling, or just talking to each other, you say he is not being realistic, so make him be, I’m not saying withold care and help, but just reduce what you do, ask him not to ask the children to keep doing things, be friends, work through this, you never know, if you help each other through what is clearly a very depressed phase in both of your lives, you could come out stronger, and maybe feel romantically inclined towards each other once more. You mentioned also his constant pain,has he discussed pain management with his Doctor, being in pain all the time makes you bad tempered, and depressed, and that’s no help to any one. I really feel that you didn’t read all that was said to you properly, and gave a lot of knee jerk responses, I can’t stress enough the value of communication in a relationship, and if you repeat how you feel enough, he’ll listen. And Peace Out? Really, in my experience on here, and the forums, everyone, especially Graham and Amanda, are very supportive, so think, and use the resource you have found here.

    I have and feel much better for it.

65. Hi Kitten,
    I’m in crisis and reaching out for help. I have received some good feedback but it’s practically impossible for the whole picture to be portrayed in this format. I’m sure that Graham has had lots of experience, yet I feel like assumptions were made about me. Doesn’t it seem like everyone’s first question when you share your marital problems “are you happy? If not then leave”. I feel like when I prayed to God to bless with the precious lives, I no longer have the freedom to say that I’m not happy so get divorced. I absolutely don’t intend to offend anyone, it’s just my feeling. I gave up harshly judging people a while back. I also feel that happiness is fleeting and that divorce is not a gaurantee for happiness. So we are in agreement that we want to slow things down and do things we enjoy together.

    Thanks for reaching out. Isolation is toxic. Enjoy your week
    Sincerely,
    Amy

66. Amy, please, register on the forums, if you haven’t already, and you can send me, or anyone else you want to talk with a private message, I am reaching out to help you, and so are others here, and yes isolation is toxic, and so is depression, so get in touch.

    Life is never simple, but I don’t ever remember anyone promising it would be

67. Oh Amy,

    Its not are you happy if not leave. Please register and PM any of us. We are all trying to help. I agree with Graham about honesty, fidelity and honor. While life isnt always easy, in any relationship, happiness is possible with communication, respect, and the ability to value ourselves and our partners. Please contact me at anytime.

68. If any one could help me I would be grateful. I am currently writing a story (it is for school) about a guy and girl getting married. Both are 19 years old but the girl is bound to a wheel chair permanently. Since I do not have very much knowledge of what disabiltity it would fall under I am kind of confused… Any advice would be appreciated :).

69. Hey I am looking for some help. I have been dating and living with my boyfriend for about two years. Recently he was paralyzed, an incomplete c4. In the future he may regain full or the majority of his mobility, but for now is wheelchair bound. He has asked me to be his primary caregiver and I said yes. But I am really concerned, he has issues with alcohol as well as jealously and possessiveness. In addition due to past substance abuse issues he has put me in harms way and due to that my family is very unhappy that I would even consider to continue the relationship. He is the absolute love of my life and I have no issue whatsoever with helping him as long as be stays sober! I love that he asked me and am excited for our life together. But I am really scared that he may continue with some dangerous behaviors and the fact that I will be able to do things with my friends without him has been an issue in the past and I worry it will intensify now. Does anybody have any suggestions? He is really amazing and caring, but as soon as he drinks he becomes unsafe and extremely jealous. I want him to begin aa, I won’t live with him otherwise, but I am still worried of his chance of relapse, or his personality changing dueto the injury.

70. Are you still married or have a history to justifiy his jealousy? Why does he not trust you? You are right to not move in with him yet. To truly love someone you must truly trust them. I question his level of devotion. To have ever purposely put you at harm is disturbing. That’s not love Anne.

    Of course the shortest way to stop an angry drunk is to stop them drinking. Why don’t you call alcoholics anonymous to get some more information. They field a majority of calls from loved ones of alcoholics.

    Never be your partners primary carer. It is one of the best ways to destroy a long term intimate relationship. The only people you both should do any physical care for are the children. Tell him no care and no drink or you guys might as well go your seperate ways already.

71. That’s the thing I’ve never been unfaithful, we broke up once and I saw another person in the meantime and then we got back together, but I have never even given him any reason to think me unfaithful. I think he’s very scared especially due to his injury that I would want to leave. My family wants that, but I absolutely do not and don’t know how to get him to understand. He had a very abusive childhood and fears abandonment and i think thats where the jealousy and even alcohol issues stem from. He’s in therapy and in the beginning processes of facing his addiction. That was a great idea to take charge and call myself, aa will really be a good resource, do they have groups for family members of alcoholics?
    Due to the accident I moved back home with my parents and am not in a great financial situation and we are fairly far so if I stay at home, I can’t be part of his recovery. I don’t have the resources to move yet and I do want to live together and get our life back together. It was recommended that he not finish his recovery in his parents house, it is emotionally not a safe place. I though while I was finishing school I could do the primary care but we could hire someone to do like three days a week and between that and a part time job and his benefits we could afford housing and then a full time care nurse after the first 6 months to a year. Would you recommend us living together and having a full time care nurse? I’m worried we can’t afford that, and that we will be forced to live fairly far, several hours away.
    I’m going to work with his therapist about the ultimatum of drinking, it’s just not going to be tolerated. The primary care I’m not sure of. He’s pretty self sufficient already and i would have very minimal to do according to the pt guys, He should have full bowel and bladder control on discharge, but there’s no sensation waist down and he has a lot of upper body strength he needs to be building and help bathing and dressing which we do together anyway. I know it’s not as easy as it sounds, but we are bothnso lucky and he isnmaking astounding progress and has an incredible out look, though I known ere is a lot more ups and downs emotionally with even more changes. Does this have any effect/extenuating circumstances or is it still the wiser choice to not be in the position at all. Ps this is so amazing, I haven’t had a lot of resources or family support and it’s nice to feel safe and able to ask anything!! Thank you!

72. Oh and that’s the other thing, when he’s sober were two peas in a pod. The only times we have had problems have been alcohol related and that’s when he’s been driving or otherwise out of control. I guess I’m worried his drunk behavior may become become sober with all the emotional turmoil or that he could develop an addiction to the medication, although so far he hasn’t and is on very little. His behavior in those times isnt acceptable or forgivable, but it’s not who he is and if he can become the sober person he used to be, it’s worth waiting for or doing the hard work in therapy and aa. I need boundaries for myself but again it’s a time consuming process we can’t easily do this far apart.

73. Ann,

    Yes AA has programs for you as well! The programs and people are wonderful and supportive as well as educational. I cant say enough about their work. They have a great website loaded with information and people you can call 24/7. Having grown up with an adult parent who has been in recovery since 1980, and having been sober myself since 1998, I can say I vouch for them. But remember, a person with an addiction needs to choose to heal themselves. Sure, you can withhold the addictive substance but that isnt going to resolve the root problem. Its up to each of us to face our demons and move forward. Dont know if this helps you but I would give them a shout and be proactive.

74. It’s Amy again,
    I just received an email update and read thru the previous posts related to my marriage and family situation. I feel very misunderstood and sad about the way my experience has been here. Our sex life was really never there and then dwindled to nothing. It seems to be a natural progression for most couples after having children. I feel this is magnified immensely when the able bodied spouse does all of the hands on care. I did everything I could to assist my husband develop a strong bond with our children and I can proudly say we did an amazing job at it.

    As for the open marriage is concerned, we had discussed divorce several times before that came up. He actually said that he wished I could have an affair because he felt so badly that he could not meet my needs. He was dropped during the night shift at the VA during a transfer in 2004 because the nurse was too cocky to ask for help. The nurse did not report it and my husband was so medicated that he couldn’t communicate to me what had happened. Finally a week later he was able to tell the doctor what happened and he had a fracture in both his tibia and fibula. They explained that his bones were so brittle from not bearing weight for so long that he is very prone to fractures. I can remember hearing that and thinking-there’s no way I’m gonna risk breaking his bones having sex. I’m not a big girl (160, 5’8″) but it still scared me. On top of him flirting with his caregiver and listening too all the conversation about his bowels, the thrill was gone. BELIEVE ME: I fully understand that sex is not the be all end all but he also had no emotional investment in our marriage due to his chronic pain and depression. All that he had was given to the kids and I was fine with that.

    I live in a world of seemingly impossible decisions. I resent the comments about me needing to grow up and quit being so selfish. Anyone out there been celibate for 13 years? I hardly feel selfish. I am with my kids 98% of the time. I work at there school, attend all of their activities. I see an amazing therapist as does my husband. Anyone who is honest will say there is no such thing as a perfect marriage. I also find it very contradictory to say how selfish I am while I have given this marriage everything I have. I may have broken a marriage vow, but I am not going to leave him while he is so uncomfortable.

    And aloft every couple I kmow has discussed divorce at some point. We have decided to try. We haven’t ever had a traditional marriage and we are trying to figure out how to do this. Does anyone have children with a disabled spouse? This is a crazy world. People can insist that our children are being harmed by our issues but I know that they know how important they are and how much we love them.

    I don’t need any response, just really felt the need to clarify issues brought up. Good night.
    Amy

75. How do you fill the space left after a deeply physical and emotional relationship. The kind a spinal cord injury partner leaves or is left with? How do you get over that?

76. Graham,
    Is this question a conversation starter or directed to a specific entry? I would to hear responses to other spouses.

77. “The kind a spinal cord injury partner leaves or is left with.” There are two people in any relationship.

78. I don’t think there is a simple answer to that Graham, when you have a physical and emotional bond with someone so deep, all you can do is hope that hurt that is felt gets less as time passes. The recent relationship issues that I have had were helped by both of us us learning that we needed to give one another room, to deal with other problems we had, both as a couple, and as individuals, and somewhere in all of that, we remembered we were friends, and sometimes I can be a bundle of loopy, triple dipped in very possessive, and very occasionally slightly unhinged!

    The only possible answer i have to this, is time does heal most emotional pain, but only if you don’t pick the scab

79. Wow! Thats a big question and a huge gap! 7 months now I have been seperated from my partner and it has been a huge adjustment. Going from not having 5 minutes to myself to suddenly having 24 hours to fill was huge and overwhelming. The first 3 months saw me on anti depressants and sleeping pills. One day at a time I am re claiming bits of a lifestyle I gave up long ago, but very aware life will never be the same. The emotional bond is a very deep and committed one, I believe it is more intense than the bond when both parties are able bodied.
    Slowly and one day at a time, but as good as things are now, I don’t think the gap will ever be filled.
    Jo

80. I learnt, while we were going through our problems, that I needed to let go of what was hurting, and be patient, something I’m not good at, but my patience is paying off, I feel you on that Jo, sleep was almost impossible, Anti-depressants prescribed, for the first time in my life, and my life has not often been easy, Weight dropped off, not good as i am built like a twig, and auto-immune illness appeared, heralding diabetes too, you just have to keep going and hope that as every day passes you feel a little better.

81. I have been a c6 quad for twenty years. I have been through all types of relationship/caregiver situations, including my mom, brother, friends, girlfriends, ex wife, & currently a health care company. The best advice I can give from experience is to keep the caregiver a separate relationship! Personal relationships are hard enough without the added stress of having to take care of someone physically. Every relationship that I’ve had that involved my personal care eventually became too much for the other person. Since I’ve hired an agency I have never been happier! I can’t afford constant care so I have learned to become more independent because of it! I no longer rely on people close to me for everything. Over the years I have learned to put myself in bed. I cook, clean, do my own laundry, work a full time job & have an active social life. Had I continued to try & rely on people close to me to do everything I would never have come this far! As bad as some of you may feel for not assisting all the time, trust me, it benefits the person with the disability more than you realize. We all deserve as much independence as possible but we are human & creatures of habit…that habit will not change unless the behavior changes. For those folks who are treating their loved ones like employees instead of family…grow up! Life isn’t fair & u cannot change the situation! Treat those around you with the respect they deserve or you will end up alone! Remember…for every person treating ur significant other badly, there are multiple people just waiting to treat them the right way! Don’t let one of those people take her/him away from u!

82. I’m very happy and blessed to hear that there is still hope at “love” and the many loyal, hard working dedicated women here are still out there. Any advice on how I may roll about to find a ‘chance’ of a woman out there…

83. Hi Caytlin,

    I myself is a handicapped. I don’t have both of my legs since birth but I have always treasured every people that has shown compassion to me, even those little things like people who offered help in their own little way. I have never mistreated anyone who have taken care of me, for I know that it is such a blessing for a person to understand me in my situation. All I can advised you is find someone who can love you and not someone who use his disability as an alibi and mistreat people. Honestly your partner misunderstood his situation he thinks he’s super special that all people should adjust to him.

    Go find your life, a life that you deserve, a life where you feel loved and respected. The Lord did not create you to suffer for the rest of your life. He has a better plan for you, but you must learn to follow where your heart is. Please learn to understand the big difference of true love and abusive love.

    Blessed Be.

84. I am not in a relationship with a person with problems but I have a two year old son that was involved in a big publicized car wreck on 169 and DD in Smithville, MO. My ex girlfriend was killed in the wreck and my OUR two year old son was in the car seat and he now has to have a breathing machine and can not move from the neck down. He has a C1-C2 Spinal injury. There is a lot of things he will never do according to doctors but I have my faith and the help of friends and family. I am more than willing to give the rest of my life and have not left the hospital a week watching over him and staying with him for love and strength. The wrecked happened a week ago from today (11/14/2012). My purpose on this site is I need to know what I am in store for (not that I care he is my son and I will gladly give my time and life for him). Amy help that I can get I thank you for.

85. Jeff, you are in store for many tough, but BEAUTIFUL experiences. The doctors may say your son will not be able to do many things, but there is SO MUCH HE WILL BE ABLE TO DO! Right now, as you learn the details of his injury you will be feeling a lot of confusion and pain, but in a few years, especially becaus he is so young, you and he will have so much more accomplishing to do! There will be physical therapy, tons of medical equipment, and many doctors you may not agree with, but there is no one way to do things. Stick to your guns when making big desicions, trust your gut. You will be the one to open new doors for your son and this forum is a great place to begin the educating process!
    I’ve been a care provider for 6 years and recently met my boyfriend who is a quadriplegic due to a diving accident when he was 18. He is now 39 and has been able to drive with an addaptive car, has a doctorate in psychology, and has raised a beautiful daughter on his own. So don’t worry. In all the homes I have worked and now being in a loving relationship with someone with a physical disability, I have learned that we all have some disability whether it be physical, emotional, mental or what-have-you and we all have variations of the same needs.
    Stay stong. I know this must be a very difficult time for you, but by getting out there and seeking information already, just a week after the accident, I have so much faith in you and your son’s life accomplishments! Medical equipment, doctors and care workers can be frustrating or overwhelming, but the equipment can be learned how to use and adjusted to fit you and your son’s personal needs and the health professionals can be helpful, but you will need to grow your voice now (if you haven’t already) because you will not only be a father, but a manager of his care. Remember to take respite too, don’t forget about your needs as your son grows. You will need independence and reassurance that it is possible, just as he will during the process. Best wishes!

86. Hi everyone. My name is Phil, and long with my mother, we live with my quadriplegic brother. It was the result of a snowmobile accident 9 years ago. He is now 40 years old and I am 38. Over the years since the accident, we have been here for him and served him like slaves would there master. Poor choice of words but that is how it feels. He never says thank you and all he cares about is himself and money which he has plenty of. We cannot talk to him about anything. He is incredibly stubborn and never wrong. He tells friends and family that we all live off him when the truth is, we don’t and all we do it sit around and wait for him to need something.
    My father passed unexpectedly in Feb of this year and it has been and still is very difficult for my mother and I, but not my brother. He treated my father like an asshole and always wanted him to leave. I believe this mainly because my father stood up to him and he hated it. I also stand up to him and he now treats me exactly like he treated my father and he now wants me out, leaving my 70 year old my to slave over him and take his abuse without me here to stick up for her. She has already had cancer and he has her lighting cigarettes for him day in and day out on top of it all, smoking in the apartment.
    I finally lost it the other night and went out. I came home intoxicated and lashed out at him for everything. Now he has something to use against me and prove to my mother, I am an asshole just like my dad and he wants me out. There is too much to write but I feel I am going crazy and I need help. Any advice?

87. Phil, you didnt say what level he is or what his abilities are. My first thought however is that you and your mother need a break. Have you considered having home nursing come in and helping out? It seems he knows you two are there so feels no need to do anything for himself and that is bad for all of you. He needs to discover what he can do on his own. I know your mother wants to help but by doing everything at his beck and call shes enabling him to continue the cycle. Independence is very important and he needs to learn that for his own well being and self esteem. I really want to say step away from his demands and let him try things for himself. You and your mother are entitled to lives as well. Also, this proving things to your mother that you mentioned- that isnt healthy to play off her like that either. Now, Im able bodied so I dont have all the answers but some counselling might be in order. Or, have you considered moving out on your own? Do you have a job that would allow you to do that? I also have issues about the smoking. It isn’t healthy for any of you. It sounds like a very complex situation so Id like to hear more from others here on the forum as well as more detail from you. Let me know if this helps.

88. How are ya Phil,Amanda makes a good point,i think your brother needs a a little realaity check,its not nice to say,but in other words he needs a good swift kick,as my dad would say.he does need to start to do things on his own providing that he can depending on the level of injury.i know quads that live very indepedent lives with in home care,so it’s very possible.it’s just not goin to get any better for you and your mom,at all because he feels he has you wrapped around his little finger.i live as a paraplegic and an amputee,and things were tough at first but you just learn and you adapt to life and your brother can learn that with the proper help and care.i hope this helps somewhat take care Phil.

89. Phil,
    This may not be the best advice, but I would say leave and take your mother with you. If your brother is not going to appreciate the both of you, then leave him to find his own caregivers (through an agency or ads). There are others out there being paid to handle such cases and in my experience as a care provider, people who don’t appreciate the help need constant reminders and it is better left to the professionals to do the reminding.
    Clients I have worked with who sound similar to your brother will continue to threaten and try to prove others to be unkind so that they get what they want. They may never change this outlook, but sometimes it does help to leave them to figure it out for themselves. We can only offer so much before they either have to give back, or will be left in great struggle. As a manager, I heard many threats from such clients to request a different manager or find another agency; everytime I told them they had my blessing. Until someone sees what you have offered them and that you have offered them everything they need and then some, they will not understand or appreciate you.
    It’s not a very pleasant outcome, but perhaps in walking away before you or your mother are subject to more harm, your brother may find that no agency or independent aide will be able to provide the consistant care he needs, unless he changes his attitude. The agency I work for has many special cases like this, where the client goes through care providers like they go through tissues when dealing with a bad cold. It isn’t pleasant for anybody and if he wants consistancy and the proper care, then he will need to learn the hard way.
    Just because someone is in a wheelchair, it doesn’t give them the right to be an asshole. If you and your mother don’t have to be there, I say go. It may not be easy for your mother as it may be for you (since it sounds like you’ve had it), but perhaps looking up agencies and giving him the resources to find his own care, in time he will thank you for it.
    I’m not saying this is the only solution, but it’s what I would do if in your shoes. He can still stay at home and still receive care, it just doesn’t have to be you. Let the professionals take over, so you and your mother don’t have to suffer.

90. Phil, make that four “move out” responses. You and your elderly mother are enabling his supposed bad behaviour. If you are sitting around waiting for him to need something, that’s your own silly fault. Aged 38 why are you still even living at home?

91. hello all of you , i`m vincent from mauritius island.
    ten years ago when i was 18yrs old i got a road traffic accident and i am now paraplegic..
    i`m totally independant and i`m trying everyday to live a normal life but sometimes i think about love,and this is impossible for me to found love in mauritius because people are VERY shortminded and i stress when i think about it but when i saw this web site i feel hope..
    i will found love?? for me its impossible!! i don`t think so

92. Hi Vincent,
    You may not believe it, but there is always a possibility for love! Just like death could be around the corner at any moment, so can cupid. I have to admit, I had to look up where Mauritius was and it’s gorgeous -you would think everyone was in love all the time!

93. My boyfriend is a quadriplegic and has been for the past 15 years. He was injured when he was 29 years old. He has no feeling below the upper chest and limited use of his arms and hands. I met him online (we play MMORPGs together) and I started falling for him before I knew he was a quad and the feelings did not change when I found out. I just knew he was the one for me. One thing he made very clear to me right from the beginning was that he wanted me to be his girlfriend, not his caregiver or nurse. Of course, I need to assist him at times as his caregivers only come for an hour in the morning and evening, but for the most part the roles are differentiated well. At first I struggled with it. My natural female instincts give me the desire to take care of him and nurture him, and it was hard watching someone else do things for him that I easily could do and know they were getting paid to do it. Love also makes you want to do anything and everything to see your partner happy. In time, though, I got over the initial frustration, and I actually enjoy being his special someone. Also, I can see now the importance of not putting all of the burden of care on the one you love. It is essential I think to both partner’s well being. I’m always ready and willing when he needs me and it’s nice sometimes to be reminded that he does want me around, but I like the fact that he is with me by choice, and not out of necessity. I also like the fact that I haven’t gotten worn down. It can be difficult sometimes because he can’t do many basic things that couples take for granted. He can’t give me a backrub at the end of a rough day or surprise me by cleaning the house. Everything takes more time and preparation, and any planning has to take his quadriplegia into consideration. There are many differences, and I can see how someone who provides a caregiver and partner role could feel like they are giving and not getting much back. For me, though, I just relax and enjoy the things I do get from him: His personality, experience, knowledge, amazing kisses and lots of romance.

94. May God bless you for having such a big heart dealing with a situation as such takes a lot. I haven’t read all comments but I will! Hang in there my brother was shot and we are going thru to be honest I’m lost but this is my brother I have to be by his side I can’t leave. He has no wife he had a young(21) girlfriend but now she’s falling back and it’s only been 5 months! I will lift y’all up in prayer and continue to look for helpful sites as such. Thank you!

95. Hi all. I have to say, I’m so blessed and encouraged to have found this site. You all have so many wonderful gifts to give through your wisdom, experience and insight. I can’t tell you how encouraged I am by reading all that’s posted here! And Graham . . perhaps it is more of a ‘calling’ than a job, what you do here. Just a thought. :-)
    Long story short, I reconnected with a man I dated many years ago who is a C-4/5 quad. We reconnected after he underwent another surgery for a spinal cyst that had been causing continued loss of function and tremendous pain. While he is no longer in pain, he came away from the surgery in a wheelchair (he walked prior to it but had limited function of his hands). Through his recovery process we have found each other again. At this time, he requires no help – he is able to do all his own personal care. He has a goal of being able to drive again, hopefully this year, and continues outpatient physiotherapy.
    To be blunt, I’ve fallen in love with this man, again, and can’t begin to describe how rich my life is now that he is back in it. He wants us to build a life together. While my heart wants nothing more, I have a young son and deeply desire to have more children. I have many fears about what raising a young family with this man could be like, and fears about whether or not we can even have more children. I fear the things I read about here: the resentment and subsequent guilt, the fatigue and stress of taking on a life many others wouldn’t, the fears about what the future may hold in terms of his continued health. Largely, I’m afraid of my own weakness, my own inability to cope with it all. Afraid that I won’t be able to ‘handle it’ and will want to leave, like so many others here. While I’m deeply in love with this man and want nothing more than to spend my life with him, I want to be as realistic as I can be about what life will look like, mainly for my son. I try to process it rationally – we communicate very well, we can do conflict in a healthy and productive way, we are respectful and gentle with eachother even in times of stress, we naturally put eachothers’ needs first, we have a lot of fun together, we are spiritually compatible, we can work as a team, we problem solve well together, and we have a tremendous amount of chemistry . He is a loving and committed parent (he has two of his own) and is an attentive, thoughtful, intelligent and peaceful man. I am not convinced I could meet a man of better character . .
    I recognize, also, that I will face a lot of opposition from family and friends should I choose this life. Its difficult to face that knowing that we may need a support system more involved than other couples at some point. And then there’s my son . . basically what I’m hoping for is for some of you to comment on parenting, both from the perspective of parenting from a chair and also from those of you able-bodied partners who have chosen a mate who is in one. How have your children adapted to having a parent in a chair? Any advice/tips you’d like to pass along? Any blended families out there? There’s not too many places I can go to talk about this so I very much look forward to what you all might have to say. If I had been married to this man at the time of his initial accident or subsequent surgery, there are many resources for spouses, however, very few for those of us choosing this life after the fact. Thank-you all very much for your time in reading this, your honesty in your posts, and your courage to process through these very difficult situations.

96. I’m a 39 year old man who continues to look for that special lady, I became instantly quad after a gun shot to the neck, I just had turn 19 when this happened to me and i had a 5 month old son. my girlfriend stood with me and we got married.But after 18 years together she told me that she couldn’t except me like this because that she met me walking and that’s who she wanted back. I under stood her and i let her go, You see i under stood her because before my accident I was a crazy freak in and out of bed i mean 3 to 8 times a day on my busy days but i never counted on my unbusy days lol but seriously this was taken away from her, I mean we still had sex but not as much or as often. I had the desire for it and i would had done anything to please her but she wasn’t into so many things, she didn;t like to recieve oral sex she only liked regular sex. Snd the reason we didn’t have sex as often was because she would by the time she didn’t help to put me in bed her urges were gone or my erection went down lol. But after she left me i hooked up with my 8th grade sweetheart we dated for 5 months but we broked up dew to that she worked to much plus she lived to far and we didn’t see each other as much as we wanted to so we split. But during our time together i tried new things one of the things was i got a tongue piercing, it was to help with a research study called TDS Tongue Drive System many must’ve seen me on the channel 9 news but anyways i also used the tongue ring for sexual reasons i mean mught as well use it right lo; well my ex girlfriend loved it specially when i would put my vibrating tongue ring believe me i left her begging for more lol the reason i’m telling you all this is because there are ways that we could satisfy our partner but we need to find how. Believe me i have so many ideas in my head that will have us having normal sex. things like easy machines and toys and other stuff that we could be on or use to have sex and satisfy our wifes, girlfriends ect…. But the bad thing is that i don’t have the money to invest in it, but don’t give up try and try. anyways the second thing that i used to spice up my sex life was enhansing pills but we all know how expensive they are like $25 dollars each that a very expensive sex lol so with my doctors prescription i went over the boarder and got cealis for cheaper and now not only i use them but i sell them cheaper. You know people let me tell you something not because we’re in a wheelchair means we’re less then everyone else you don’t have to let anyone walk all over us, learn to value and respect yourself. You know after 18 years together my wife disided to walk away from our marrage and after 3 years of being away she wanted to come back because she seen that the grass wasn’t greener on the other side and that life was treating her like crap and now she wanted to come back after she didn’t care to lose her husband her house but must important her son, and so i told her sorry but no. because you went out there to look for your happiness and you couldn’t find it well now i want to look for my happiness i know that there’s a special woman out there for me that will love and respect me for who i am and how i am not for who i was…… so ladies here i am lol. On the serious note really dear friends raise your head up learn to value yourself and don’t let anyone walk all over you. bye and peace out, see ya when i see ya

97. Thank you all so much for this site. You have no idea how much it has helped me in my relationship with my fiancée (3 1/2 years C4 incomplete, 23 years old). This is his first relationship since the accident. I work full time and I’m his primary care giver. We do not yet have a second caregiver at this moment (working on it). He’s very concerned about sex. We only have intercourse about once a week give or take. He brought it up to me today that he is concerned that I don’t like it or that he’s doing something wrong. Don’t get me wrong, I LOVE it. And I love him, but I’m exhausted! I’m literally working 80 hours a week between my job and being is PCA. We also have four dogs that need tending to. How do I tell the love of my life that I really am just tired? I’ve tried tellig him but I don’t feel like he believes me. I don’t want to get all whiney about what all I do for him, but just trust me when I say that it’s a lot. And I don’t have any help. I don’t want to go down the list and tell him all the reasons I’m so tired because I HATE making him feel self conscious about his disability. I don’t want him to ever feel like I’m looking at the chair and not him.

98. Hi Lauren, all you can do is be honest. It’s common for a quadriplegic to feel inadequate as a lover. You can reassure him over and over but in the end it is his insecurity and so only he can deal with it. I say insecurity but it’s not a bad thing. He just wants to be the best man he can be to please you. If you both look at it that way things might be a little easier.

99. Hello everyone I am a c 3/4 quad of over 33 years I was 19 when I broke my neck in a diving accident and I can tell you all there isn’t a quad alive that can honestly tell you they have accepted life as a quadriplegic you don’t accept it you learn to live with it. As for a relationship I am no expert I have only been in one relationship ever and I am the one that ended it after 2 years. selfish yes, did it need to be done yes, am I glad it ended no. You girls are amazing I don’t understand these selfish ***** treating you this way! As a quadriplegic I would give up my arms and legs all over again to find someone like you, the hardest thing I have had to deal with is knowing that I will more than likely never have a partner never mind one who loves ME. I live alone in the southwest of western australia in an old farm house on 5 acres with my best friend (a dog).

    You girls need to know most quadriplegics are very very selfish. I was, but due to been paralyzed now almost thankful for my accident because as hard as it was and is i have found relative peace and acceptance in life. I have pretty much given up on finding love but the one thing I can tell all you girls is just one thing if your husband, boyfriend, girlfriend whoever, treats you bad mentally or physically leave they won’t change in fact things will more if not definately get worse to them you are their servant nothing more, them saying they love you is as easy as hell and a lot easier than finding carers. As for wanting a career do it you don’t need someone’s permission to live YOUR LIFE. Always remember if someone is stopping you from doing what YOU want they don’t love you they want to control you. As for feeling guilty about leaving your so called boyfriend if your thinking it you want out.
    Cheers Terry

    ps if any of you angels are ever in Busselton I ain’t hard to find! Good luck in love. best wishes in looking.

100. Dear Caytlin,
     I met my boyfriend 5 yrs ago and he’s a quadriplegic too. I can understand what you mean… But,I have to give you an important advice: you have to start thinking about your future, your life and what YOU want. He’s quadriplegic but he’s a man, your man first! Do you love him enough to be with him forever?
     Before I started dating my bf, we discussed about his feelings, my feelings and our future. We were already in love but he wanted to explain me everything I needed to know about his health. I didn’t want to break his heart and we didn’t want to regret anything.
     We’ve been together for almost 5 yrs and he’s my soulmate. I love him so much I can’t stay an hour without hearing his voice. And I think about him allll the time. We are so in love and all our friends envy our happiness and love.
     We live together, it’s been two yrs and I’m the happiest girl in the world.
     You are not a bad person or a selfish woman, but you have to decide what you want to do. He’s the right man?
     To be truly happy, you have to feel completed and satisfied. What do you want? You love him enough to give up your dreams? The wheelchair won’t disappear and your wishes either.
     Everyone has problems and must go through difficulties but we can choose our future. Your unhappiness can distroy your life and your bf life too.
     You know, don’t see his wheelchair and I don’t care to be tired because he can’t help me. I know what my life is going to be and I don’t have any regrets. I’m happy and this is what I want.
     You should relax a sec and ask yourself if he’s what you dreamed. You are not selfish if you decide to break up…it’s your heart and future.

     I wish you luck and love forever. And remember, it’s YOUR heart.