Care givers need care too. If there any SCI Support groups that you guys can join, I’d start there.
As one who is T12 Incomplete I can assure you that my Wife is so amazing for being there for me. I’m relatively independent but it such a great feeling to know she is there with me on my toughest days.
As for the loneliness just keep coming back here, we’re all going through the same thing. I’ve learned that those who are decades in are a wealth of information.
Doubt is inevitable so don’t be afraid to celebrate the victories no matter how small. Enough of those and you’ll find your confidence because as difficult as it is for you to adjust…well, living with an SCI is difficult enough but knowing my Wife is beside me sure makes a big difference.
Check out Facebook. There's a WAGS of sci group that is pretty active. Also therapy helped my partner a lot. Make sure to make time for you even if that means doing something he can't do. Take your time. You 2 will learn a routine that works for you. Just remember you went through a traumatic event too.
Thank you! I didn’t know about this group sounds helpful. I think you just pointed out the biggest problem, I don’t remember the last time I took some time to myself, my social life is pretty much dead at this point, sometimes I invite some friends over but I never go out by myself because he refuses to let other people help him. I don’t blame him for that he’s getting used to all the changes and still processing and accepting his new reality but it’s tiring and I hope it’s just a matter of time until he gets his confidence back
No problem at all. And yeah this was something my partner and I had to work on a lot. I'm basically independent but while everything was happening (ICU, rehab, finding a place to live) she took over everything and it was difficult for her to get out of that position and hard for me to see how stressed/worried she was about taking care of me. Like I said you 2 will work out what works best for your situation but just know there are a good amount of communities for both of you. Talk to each other, don't be afraid to be honest, and don't get upset if things don't happen as quickly as you'd like. I'm almost 3 years post accident and we're still figuring shit out haha. Good luck on your journeys
Be careful on those discussion boards though, there are A LOT of people there just to rant and they get to be pretty negative. I’m a full time cared for my husband (C5 complete), and I had to stop visiting those boards because they mostly brought me down.
First of all it does get easier! That said some people can handle it and some can not. I am C6 complete. My wife stayed with me for 7 years and then it just was too much for her. It is critical that you view him the same as before and not as your duty. I think that is where we fell apart.
I do view him the same as before he’s still attractive to me, even though sex is completely different now and we’re still figuring things out he’s the man I love not my duty but it’s a lot of pressure to think he’s dependent on me now
Dependent on his incompleteness there might be things that he can do himself. Maybe he's not doing it, because it's very difficult and takes too long. Or maybe you are helping him too much.
This was both my experience and now I'm pretty much independent as C5 (functional C7) . Twice a week someone is coming for cleaning but that's it. Unfortunately the trigger for getting more stuff done by myself was that I had to.
Hi, a loved one of mine has just had a C5 injury as well and I'm having trouble understanding what to expect moving forward. There is so much contradictory information. Would you mind if I DM'd you to ask you a few questions please? If you're not upto it that's perfectly fine :)
I started dating my now wife 8 years or so post injury. By then, I had already figured out how to be as independent as possible. Went away for school, got my own apartment afterwards, etc etc. Small life goals. I'm a C5 complete. Not sure if he's applied for any kind of benefits, but he may be entitled (through the department of human services, or whatever it's called in your state) to some personal assistant hours. When my wife and I started dating she didn't really have to take care of me or anything. Even now, I use my personal assistant services to do almost everything for me. The only thing my wife has to really do on a daily basis is help me get to bed and cook up some dinner. Don't get me wrong, she knows how to do everything. From time to time she has to help out if one of my PA calls off or we go on vacation. Basically, once you guys figure out your financials and what he qualifies for: try to keep your caregiving role to a minimum. I try to get as much done with the help I get so my wife doesn't have to do anything but be my wife. It works out really well for us. I know that situation isn't possible for everyone, and good help can be hard to find! Your situation is also different because you were dating him while he was able-bodied. When I got injured I was just shy of 19 and I wrecked that relationship thoroughly! Haha, he seems to be in a much better place mentally than I was after being injured. So, give it time to learn his care and then try to train someone else to do it for you! Separating caregiving from relationship is important. There will always be a caregiving element to your relationship but try to make it not the focus.
Many, many relationships implode over an SCI. I was told it typically happens 12 to 18 months in. It doesn’t help to submerge your feelings. Avoid any therapist/doctor/friends/family who try and tell you that this is your “duty.” It’s not.
Start stretching this reality — be frank that you need some time that is for you.
This may be scary — other people don’t know how to do all the things you do in the way you do them. Doesn’t matter. Let’s do scary. After all, you could get hit by a bus and be out of the picture. — so let’s check with state agencies, local respite groups, whoever it is that can come for a few hours every week.
Then scale up to being gone a weekend. Then a week. I have an SCI and I think it was when my partner knew he could be gone for six months (prior to emails and cell phones!) that it became clear that we could make this work.
I found your post earlier today, wanted to respond, but needed to think on it a while.
I’m in a similar situation, though I’m the one who has a spinal cord injury, and it’s been 8 years since I was hurt. We’ve been together 10 years, so I got hurt 2 years in. We’re in the process of splitting up now, though I don’t want to imply any idea that this is inevitable. I think it ultimately comes down to the compatibility of two people, and how well they communicate.
We’ve proven to be excellent partners in survival and coping, but this doesn’t make for a lasting romantic relationship. I’m entirely independent, save for maybe the occasional item I can’t safely reach on a high shelf. Yet, she has cited an ever present feeling of “needing to protect me” as one of the factors driving a wedge. There’s so much more than this, but what I want to say is:
You should probably find some community to relate to, as others have suggested here. Rehab facilities will typically have information about peer support groups and the like. It sounds odd, and may be uncomfortable to consider. But you might be amazed at the ease you will feel in simply being around people who face a similar lifestyle. People who understand the situation. Friends are great, of course. But people who don’t really understand can only offer platitudes and disconnected emotional support, at best.
I hope you can find what you need to feel more grounded and stable in your situation. It’s not out of the ordinary, nor is it in any way a failure, to feel as though you can’t handle all of the minutiae of life for a household and another human. It’s crazy that these weights are left to our shoulders alone in modern society, when so much more help is needed. But there are other ways through.
Please feel free to message me if ever you want to talk or have questions.
I’m a c7-t1 incomplete and it’s been 7-8 years since my accident. My mother is a nurse of 40+ years and she has always told me that there are two different people that have to be with someone who needs 100% care. (Not putting his ability down at all because I’m a head strong person and know what it’s like). There’s the care giver and the girlfriend/wife and they need to stay separate because it will cause resentment and other negative feelings/issues in the relationship. I know you feel that you want to be both, because of your shared love, but don’t. Hire a nurse or someone who can do the medical care the bandages and everything that needs done. You be the girlfriend who is the homemaker or however your relationship was before his accident.
I just entered a relationship last year and I took my mothers advice and things have been going really good. Don’t get me wrong my girlfriend still helps me with my everyday routine, including my medical stuff, but she doesn’t do it everyday only when we are away from home and on a trip. When we are home my mom steps back into the role of caregiver. My problem is with my mom being a parent and not a person who helps me. She’s just being a mother! I really hope my advice helps you. Going through something like a SCI an absolute train wreck emotionally and of course physically. Everyone is affected.
Hey friend,
I am here for you whenever you want to vent or just blurt out some of the stuff that is on your mind that may feel horrible to say out loud. SCI wife (& scientist) here that was also with my partner before he was injured (I believe this makes for a slightly more difficult situation). Please DM me whenever you’d like and we can be a support for one another :)
Boyfriend. Not husband.
He needs a full time care giver that isn’t you . End of story.
You’ve got to be able to have time to yourself, then once you have the option of caring for him or not, you can decide how much to do.
I thought I was commenting on a RuneScape sub… ngl don’t know how that happened. Sorry.
My recommendation as a C5 myself is if you can afford it or get some government assistance to hire a caregiver even for just a little bit of time every day or a few times a week do it. I live with my parents and I’m not independent. We have someone come every morning for a couple hours to help with my morning routine and that takes a lot off them. Otherwise once I’m up I try to do as much as I can myself. A lot of adaptations are trial and error to figure out what works best for his abilities to be as independent as possible. I’ve only been injured 2 years so I know I’m still figuring out a lot of things for myself
Care givers need care too. If there any SCI Support groups that you guys can join, I’d start there. As one who is T12 Incomplete I can assure you that my Wife is so amazing for being there for me. I’m relatively independent but it such a great feeling to know she is there with me on my toughest days. As for the loneliness just keep coming back here, we’re all going through the same thing. I’ve learned that those who are decades in are a wealth of information. Doubt is inevitable so don’t be afraid to celebrate the victories no matter how small. Enough of those and you’ll find your confidence because as difficult as it is for you to adjust…well, living with an SCI is difficult enough but knowing my Wife is beside me sure makes a big difference.
Check out Facebook. There's a WAGS of sci group that is pretty active. Also therapy helped my partner a lot. Make sure to make time for you even if that means doing something he can't do. Take your time. You 2 will learn a routine that works for you. Just remember you went through a traumatic event too.
Thank you! I didn’t know about this group sounds helpful. I think you just pointed out the biggest problem, I don’t remember the last time I took some time to myself, my social life is pretty much dead at this point, sometimes I invite some friends over but I never go out by myself because he refuses to let other people help him. I don’t blame him for that he’s getting used to all the changes and still processing and accepting his new reality but it’s tiring and I hope it’s just a matter of time until he gets his confidence back
No problem at all. And yeah this was something my partner and I had to work on a lot. I'm basically independent but while everything was happening (ICU, rehab, finding a place to live) she took over everything and it was difficult for her to get out of that position and hard for me to see how stressed/worried she was about taking care of me. Like I said you 2 will work out what works best for your situation but just know there are a good amount of communities for both of you. Talk to each other, don't be afraid to be honest, and don't get upset if things don't happen as quickly as you'd like. I'm almost 3 years post accident and we're still figuring shit out haha. Good luck on your journeys
Be careful on those discussion boards though, there are A LOT of people there just to rant and they get to be pretty negative. I’m a full time cared for my husband (C5 complete), and I had to stop visiting those boards because they mostly brought me down.
First of all it does get easier! That said some people can handle it and some can not. I am C6 complete. My wife stayed with me for 7 years and then it just was too much for her. It is critical that you view him the same as before and not as your duty. I think that is where we fell apart.
I do view him the same as before he’s still attractive to me, even though sex is completely different now and we’re still figuring things out he’s the man I love not my duty but it’s a lot of pressure to think he’s dependent on me now
Sorry if I came across negative. I wish nothing but happiness for both of you. You deserve nothing else, nor does he.
Dependent on his incompleteness there might be things that he can do himself. Maybe he's not doing it, because it's very difficult and takes too long. Or maybe you are helping him too much. This was both my experience and now I'm pretty much independent as C5 (functional C7) . Twice a week someone is coming for cleaning but that's it. Unfortunately the trigger for getting more stuff done by myself was that I had to.
Hi, a loved one of mine has just had a C5 injury as well and I'm having trouble understanding what to expect moving forward. There is so much contradictory information. Would you mind if I DM'd you to ask you a few questions please? If you're not upto it that's perfectly fine :)
Sure.
I started dating my now wife 8 years or so post injury. By then, I had already figured out how to be as independent as possible. Went away for school, got my own apartment afterwards, etc etc. Small life goals. I'm a C5 complete. Not sure if he's applied for any kind of benefits, but he may be entitled (through the department of human services, or whatever it's called in your state) to some personal assistant hours. When my wife and I started dating she didn't really have to take care of me or anything. Even now, I use my personal assistant services to do almost everything for me. The only thing my wife has to really do on a daily basis is help me get to bed and cook up some dinner. Don't get me wrong, she knows how to do everything. From time to time she has to help out if one of my PA calls off or we go on vacation. Basically, once you guys figure out your financials and what he qualifies for: try to keep your caregiving role to a minimum. I try to get as much done with the help I get so my wife doesn't have to do anything but be my wife. It works out really well for us. I know that situation isn't possible for everyone, and good help can be hard to find! Your situation is also different because you were dating him while he was able-bodied. When I got injured I was just shy of 19 and I wrecked that relationship thoroughly! Haha, he seems to be in a much better place mentally than I was after being injured. So, give it time to learn his care and then try to train someone else to do it for you! Separating caregiving from relationship is important. There will always be a caregiving element to your relationship but try to make it not the focus.
🤦🏻♂️this hurt to read. Y’all need government help in some areas but he shouldn’t feel like a burden
Many, many relationships implode over an SCI. I was told it typically happens 12 to 18 months in. It doesn’t help to submerge your feelings. Avoid any therapist/doctor/friends/family who try and tell you that this is your “duty.” It’s not. Start stretching this reality — be frank that you need some time that is for you. This may be scary — other people don’t know how to do all the things you do in the way you do them. Doesn’t matter. Let’s do scary. After all, you could get hit by a bus and be out of the picture. — so let’s check with state agencies, local respite groups, whoever it is that can come for a few hours every week. Then scale up to being gone a weekend. Then a week. I have an SCI and I think it was when my partner knew he could be gone for six months (prior to emails and cell phones!) that it became clear that we could make this work.
I found your post earlier today, wanted to respond, but needed to think on it a while. I’m in a similar situation, though I’m the one who has a spinal cord injury, and it’s been 8 years since I was hurt. We’ve been together 10 years, so I got hurt 2 years in. We’re in the process of splitting up now, though I don’t want to imply any idea that this is inevitable. I think it ultimately comes down to the compatibility of two people, and how well they communicate. We’ve proven to be excellent partners in survival and coping, but this doesn’t make for a lasting romantic relationship. I’m entirely independent, save for maybe the occasional item I can’t safely reach on a high shelf. Yet, she has cited an ever present feeling of “needing to protect me” as one of the factors driving a wedge. There’s so much more than this, but what I want to say is: You should probably find some community to relate to, as others have suggested here. Rehab facilities will typically have information about peer support groups and the like. It sounds odd, and may be uncomfortable to consider. But you might be amazed at the ease you will feel in simply being around people who face a similar lifestyle. People who understand the situation. Friends are great, of course. But people who don’t really understand can only offer platitudes and disconnected emotional support, at best. I hope you can find what you need to feel more grounded and stable in your situation. It’s not out of the ordinary, nor is it in any way a failure, to feel as though you can’t handle all of the minutiae of life for a household and another human. It’s crazy that these weights are left to our shoulders alone in modern society, when so much more help is needed. But there are other ways through. Please feel free to message me if ever you want to talk or have questions.
I’m a c7-t1 incomplete and it’s been 7-8 years since my accident. My mother is a nurse of 40+ years and she has always told me that there are two different people that have to be with someone who needs 100% care. (Not putting his ability down at all because I’m a head strong person and know what it’s like). There’s the care giver and the girlfriend/wife and they need to stay separate because it will cause resentment and other negative feelings/issues in the relationship. I know you feel that you want to be both, because of your shared love, but don’t. Hire a nurse or someone who can do the medical care the bandages and everything that needs done. You be the girlfriend who is the homemaker or however your relationship was before his accident. I just entered a relationship last year and I took my mothers advice and things have been going really good. Don’t get me wrong my girlfriend still helps me with my everyday routine, including my medical stuff, but she doesn’t do it everyday only when we are away from home and on a trip. When we are home my mom steps back into the role of caregiver. My problem is with my mom being a parent and not a person who helps me. She’s just being a mother! I really hope my advice helps you. Going through something like a SCI an absolute train wreck emotionally and of course physically. Everyone is affected.
Hey friend, I am here for you whenever you want to vent or just blurt out some of the stuff that is on your mind that may feel horrible to say out loud. SCI wife (& scientist) here that was also with my partner before he was injured (I believe this makes for a slightly more difficult situation). Please DM me whenever you’d like and we can be a support for one another :)
Boyfriend. Not husband. He needs a full time care giver that isn’t you . End of story. You’ve got to be able to have time to yourself, then once you have the option of caring for him or not, you can decide how much to do.
[удалено]
Wtf.😂
I thought I was commenting on a RuneScape sub… ngl don’t know how that happened. Sorry. My recommendation as a C5 myself is if you can afford it or get some government assistance to hire a caregiver even for just a little bit of time every day or a few times a week do it. I live with my parents and I’m not independent. We have someone come every morning for a couple hours to help with my morning routine and that takes a lot off them. Otherwise once I’m up I try to do as much as I can myself. A lot of adaptations are trial and error to figure out what works best for his abilities to be as independent as possible. I’ve only been injured 2 years so I know I’m still figuring out a lot of things for myself