I am 20 years old and have been dating my fiance, Chris 34 a C6-C7 incomplete quadriplegic for almost a year now. Chris has no feeling from the chest down, complete use of his arms and limited use of his hands (he can write, type, push his manual chair and even drive so he does very well for himself). Chris has been in the police force for 10 years now and before he started his career in law enforcement he was an Army Ranger. Chris was shot in the neck while on duty in 2007 serving involuntary commitment papers to remove a 60 year old woman from her home.
It was love at first sight! He has always been in good spirits. He has accepted himself and his new life style. Which I admire so much. Lately our relationship is not what it used to be. I am his primary caregiver, we have attendant care 4 nights a week for 3 hours, the rest is left up to me.
I am not in good health myself, but I feel like I don’t have the right to complain. He always has to outdo me with his problems. It’s not a competition who feels the worst. Every day I find it harder and harder to take care of him. I am wearing myself out. Worst of all, he is a very cold hearted person with a very dry sense of humor. But I do admire him so much for what he has overcome in his life.
IN THE BEGINNING
Before his accident he was an athletic person, he ran every day, a semi-pro cyclist, he loved to hike and camp. He is in very good spirits and doesn’t see himself as disabled. He still lives a very active lifestyle, which wears me out tremendously.
In the beginning everybody was against us. Especially my older brother who was his SWAT Team partner and was by his side the night he was shot. I love him very much and my family has just not gotten to where they accept our relationship. I left home to move in with Chris, I gave up everything that I worked so hard for. I quit my job, dropped out of school, and gave up my car for a Volvo (so he could transfer easily and the wheelchair fits in the back). So therefore I have nothing of my own anymore. I did it out of love for him. He was the best thing that ever happened to me, and I wanted to be with him more than anything despite my family turning against me.
Wheelchair Couple Holding On For Love
We have our good days and bad days as any relationship does. I gave up a lot to be with Chris because I love him so much. Adjusting to a quadriplegia lifestyle has been really hard for me. I still haven’t gotten used to other women being in my house taking care of my fiancé, knowing about our personal lives and every little detail that goes on in our home. I pretty much take care of everything else on my own the laundry, cooking, cleaning, taking care of his service dog, making sure he has his meds every week, taking him to work, picking him up from work, taking him wherever he needs and wants to go.
WHERE DID MY LIFE GO
He is not the same person that I feel in love with. He has become very demanding and says hurtful things. When I try to talk to him about it he just says it has to be done. I constantly have to clean up after him on top of everything else and he doesn’t care. I don’t see him as disabled, I see him not the chair. If he is able to make the mess he is able to clean it up, but he leaves it for me, if I didn’t do it, it wouldn’t get done. Then he just says that I’m OCD. But what is wrong with wanting a clean house? He just expects me to do everything and I never get the respect or appreciation that I think I deserve. He never offers to help me and I am getting very tired and sad.
I want to go back to school, but he says that I don’t need to because I get paid a very decent amount of money as his primary caregiver. But I want more for me, I want to be successful and have a career. I want a family one day and I know that I could never have children and take care of him. He is getting a vehicle that is modified for him to drive soon. I am hoping that it will help our relationship and take some stress of me.
HIS QUADRIPLEGIA IS CONSUMING ME
Quadriplegic Wheelchair Lovers
I have explained my feelings and thoughts to him as we are very open with each other. We have never had a problem expressing our feelings. After I tell him how I feel, he just says sorry. That’s it… “sorry.”
I don’t know what to do anymore. I have thought about hiring weekend, night time help for the bowel program and showering, but he says that the weekend is our time for just us. The last time I mentioned it, he said “Is it really that hard for you to do it a couple of nights?” It is, because we don’t have simple quiet weekends at home, we are always on the go, by the time we get home I am worn out from the traveling, transfers, and putting the wheelchair in and out of the car.
I do the morning routine; I get him up every morning and drive him 30 minutes to work then drive 30 minutes back home. He says, what is the point on hiring a morning time aide, because when he gets his truck the morning routine will just consist of getting him up and dressed. But he has been saying the truck will be here in a couple of weeks… for about 3 months now.
QUADRIPLEGIC & WHEELCHAIR PARTNERS INSIGHT
I guess I am asking for your advice as wheelchair users other quadriplegics and their lovers or partners. Am I being selfish? Since I had an idea of what I was getting into? I never knew that it would be this hard. I can’t do the things that I want to do in life, because I am always assisting him in the things he wants to do. He is very inconsiderate of my feelings and is very selfish. It is always about him, but what about me? Am I the selfish one?
I don’t know what to do anymore, I am asking for your advice. I hope that I haven’t offended you in anyway. If I have I certainly did not intend to. I hope that you can help me and give me some insight.
Best wishes to you!
Caytlin
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.
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.
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.
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
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.
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
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
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.
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.
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
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.
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
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
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.
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
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!
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?
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.
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.
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.
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.
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.
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.
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
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 :)
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?
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
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.
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?
Hi Nich, this post is about “Quadriplegic Lovers Relationship Troubles” please ask your dating questions in our forum. We can answer you better there.
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!
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!
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.
I LOVED IT
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.
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 :(
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.
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!!!
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.