Last post Wed, Apr 30 2008 4:10 PM by kbarton. 16 replies.
I have fallen hopelessly in love with a man who is a C5 quadriplegic. We want to be together, but he is afraid that I am not going to be able to deal with all that comes with being with a man with a serious spinal cord injury. I want to be with him and have done lots of research about what this might entail, but I am afraid he isn't believing I can handle it. Can anyone share their experiences as a caregiver. Any input would be appreicated.
Hi Spinner,
I can't offer you any concrete advice about caregiving or spinal chord issues, but I wanted you to know that I think you're wonderful for loving someone with a disability. It's a sad fact that many people don't look past our gimpy ways. I do know that my husband has said he doesn't see himself as a care giver, just a husband. He does what is necessary because he loves me and made a commitment to me. If that makes sense. I guess what he means is that it's less an issue of being a care giver and more of an issue of being... well.. it is what it is. lol, clear as mud?
Welcome to disaboom.
"I believe everything out of the common. The only thing to distrust is the normal."John Buchan
Hi Spinner,I sent you a private message, hopefully you got it.
When I had first been injured with my C5 spinal injury, a cousin I never met had heard of me and my fate. She had been divorced for years, kids moved on, and she wanted me to move into a house with her she recantly bought. She did all the prep for me, contacted support medical and social contacts and what ever.
To make a ten year story short, the sparkle went out in months but she hung in there. I refused for months to move in with her until I felt she truly knew what she wanted. Well, with my caregivers coming and going she felt to have lost her privacy and was miserable for years with me until I finaly got my act togather and left.
I suggest you cool your heals and see what is going on for two years.
eRetriever
Spinner: I have fallen hopelessly in love with a man who is a C5 quadriplegic. We want to be together, but he is afraid that I am not going to be able to deal with all that comes with being with a man with a serious spinal cord injury. I want to be with him and have done lots of research about what this might entail, but I am afraid he isn't believing I can handle it. Can anyone share their experiences as a caregiver. Any input would be appreicated.
If it truly is love, you can handle anything : )
Thanks so much everyone. I think we're going to make it and I can't describe how happy that makes me. THANKS!
Dear Spinner, First of all, I wish you and your guy all the luck and happiness in the world. I have a little bit of experience in this situation, and I can only tell you that he probably is feeling the same way I did. I could not believe that this wonderful woman would be satisified with someone with the limitations I have. She never gave up tho, and we have been married for 2 years now.
The one bit of advice I could give you would be, if possible, you do not become his main caregiver. IMO it is necessary to keep the roles of wife and lover seperate from being his nurse. It might be fine for a while, but it will begin to wear on you both.
Another thing that has to be a consideration is if he is receiving benefits. If he marries he may lose benefits, and that could put a strain on the relationship. It is a damn shame that the disabled are descriminated against this way, especially when any benefits received are not nearly enough to cover expenses.
I sure hope everything works out for you, and you are as happy as my wife and I are. It is not easy, and I'm sure you are aware of special problems that will arise, but I know that if you love each other, and are strong, you will make a full and happy life for yourselves.
All the best,
Jon
C-2 quad, on vent, 9 yrs post.
IamwhatIam:if possible, you do not become his main caregiver. IMO it is necessary to keep the roles of wife and lover seperate from being his nurse. It might be fine for a while, but it will begin to wear on you both.
I think this is great advice. If you don't mind me asking, have you all had conversations about this yet? I thought it was interesting in your post that you shared your love and then at the end you mentioned the caregiving role so I'm not sure if this is something you'd planned on together or sort of assumed because maybe you weren't aware there are sometimes some other options. Not easy ones but they might be worth fighting for...
I think the best thing you can do to "convince" him is be patient, hang in there, and SHOW him your support/love....I bet he'll come around Good luck!
IamwhatIam:Dear Spinner, First of all, I wish you and your guy all the luck and happiness in the world. I have a little bit of experience in this situation, and I can only tell you that he probably is feeling the same way I did. I could not believe that this wonderful woman would be satisified with someone with the limitations I have. She never gave up tho, and we have been married for 2 years now. The one bit of advice I could give you would be, if possible, you do not become his main caregiver. IMO it is necessary to keep the roles of wife and lover seperate from being his nurse. It might be fine for a while, but it will begin to wear on you both. Another thing that has to be a consideration is if he is receiving benefits. If he marries he may lose benefits, and that could put a strain on the relationship. It is a damn shame that the disabled are descriminated against this way, especially when any benefits received are not nearly enough to cover expenses. I sure hope everything works out for you, and you are as happy as my wife and I are. It is not easy, and I'm sure you are aware of special problems that will arise, but I know that if you love each other, and are strong, you will make a full and happy life for yourselves. All the best, Jon C-2 quad, on vent, 9 yrs post.
He does seem to feel the way you do,which I honestly don't quite get. This guy is the love of my life, physical limitations or not, I want to be with him forever - period. I can't imagine giving up at this point, and I would love the chance to talk to your wife.
We recently discussed the fact that he would not want me to be his main caregiver, and all of his reasons made perfect sense to me. He is 18 years post-injury and has had the same caregiver for the past 16 years, he made it clear that she is part of the family and I am glad of that.
I don't know much about the benefits he receives, thanks for the heads up on that. Yikes!
KaraSwims: IamwhatIam:if possible, you do not become his main caregiver. IMO it is necessary to keep the roles of wife and lover seperate from being his nurse. It might be fine for a while, but it will begin to wear on you both. I think this is great advice. If you don't mind me asking, have you all had conversations about this yet? I thought it was interesting in your post that you shared your love and then at the end you mentioned the caregiving role so I'm not sure if this is something you'd planned on together or sort of assumed because maybe you weren't aware there are sometimes some other options. Not easy ones but they might be worth fighting for...I think the best thing you can do to "convince" him is be patient, hang in there, and SHOW him your support/love....I bet he'll come around Good luck!
We just started discussing this stuff, I think we have a long way to go before we have it all ironed out. But we know we love each other and are dedicated to making this work. Thank you for the support!
IamwhatIam:The one bit of advice I could give you would be, if possible, you do not become his main caregiver. IMO it is necessary to keep the roles of wife and lover seperate from being his nurse. It might be fine for a while, but it will begin to wear on you both.
On the other hand...
As a tetraplegic who is 'defined' as being catastrophically disabled (can not do much on my own), does not have much in the way of funds (can not hire 24/7 PAs; can not even get them to 'come in' when I need them at 4:45am and 8pm), and is married, the reality of many such situations is that one's spouse does become the main caregiver.
--- Regards, Walt Schmidt
How long has he been disabled? I am not being rude but honest, I have been married for 25 years and my husband was injured 2 years ago (c3 incomplete) He is not the man I married in every way and the physical ways you learn to live with if you love each other its all worth it. The hardest part is the anger, he is angry at everything and everyone and he won't get help It is getting to the point where no one wants to be around him. The reason I asked how long he has been disabled is that oddly enough when he first came home from the hospital he was wonderful, loving and just greatful to be alive, now it is like he hates being alive and I am thinking about leaving for the first time in 25 years. If your guy is not an angry person if his spirit is sweet and loving then there is no reason that it can't work. I hope this helps
IamwhatIam: "The one bit of advice I could give you would be, if possible, you do not become his main caregiver. IMO it is necessary to keep the roles of wife and lover seperate from being his nurse. It might be fine for a while, but it will begin to wear on you both.
As a tetraplegic who is 'defined' as being catastrophically disabled (can not do much on my own), does not have much in the way of funds (can not hire 24/7 PAs; can not even get them to 'come in' when I need them at 4:45am and 8pm), and is married, the reality of many such situations is that one's spouse does become the main caregiver".
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Unfortunately, Walt, what you say is true. That is why I said "if possible". I know my wife could, and would become my carergiver, but I hope that never needs to be the case. Is there any way you could change your schedule so you could get some help? Do you think having your wife as your main caregiver has made your marriage stronger or hurt it? I do think some people can handle things better than others. I am very sorry that you can't get the care you need and deserve. Especially being a veteran.
IamwhatIam:Is there any way you could change your schedule so you could get some help?
My workday is 11 hours -- 2 before and 2 after the 'official' 7 hours. Others suggest we physical-challenged should "stay active." I suggest more of us would, if the assistance we need was available... on our terms.
IamwhatIam:Do you think having your wife as your main caregiver has made your marriage stronger or hurt it? I do think some people can handle things better than others.
While it hasn't hurt it... Last week we celebrated our 36th wedding anniversary. This, while many (most ?) couples we know are on their second-plus relationship. It's taken a strong partner to put up with my Idiosyncrasies [smile], no less my handicap-necessitated needs. I am very furtunate.
jodi2mark1:How long has he been disabled? I am not being rude but honest, I have been married for 25 years and my husband was injured 2 years ago (c3 incomplete) He is not the man I married in every way and the physical ways you learn to live with if you love each other its all worth it. The hardest part is the anger, he is angry at everything and everyone and he won't get help It is getting to the point where no one wants to be around him. The reason I asked how long he has been disabled is that oddly enough when he first came home from the hospital he was wonderful, loving and just greatful to be alive, now it is like he hates being alive and I am thinking about leaving for the first time in 25 years. If your guy is not an angry person if his spirit is sweet and loving then there is no reason that it can't work. I hope this helps
He is actually 18 years post injury, and I think that is making this a bit easier (which is good because there is so much - independent of the injury - that makes this very difficult). For the first time I am starting to believe we can get through this to the other side. (With amazing, heartfelt, unbounded thanks to Jon!)
Jodi, my heart is breaking for you and your man. I am really sorry that you are both dealing with this. I hope and pray that it works out for you both.
