25 replies to this topic

[Spinner]

This topic has been discussed before, but after spending more time on this board, and being involved with my SO longer, I thought I might revisit it. My fiance was nearly 20 years post injury when we met. I provide for his physical cares four days a week and do all the physical stuff in the household. I have never seen myself as his carer, I see myself simply as his fiance. I can't help but wonder if this is at least partially due to the fact that he was so far out when we met and we never had to make the adjustment from an able bodied couple to a couple with one able bodied partner and another living with a disability. I am curious to hear others' thoughts on this, both those who met their SO after SCI and those who went through the injury as a couple.

[Glor]

I met my partner (now deceased) 6 months before his injury....we were both young, so the adjustment was for both of us....actually I'd like to say we grew up with SCI together, but not necessarily the same experience...of course....we were also very different people..made for a very interesting dynamic....I am the 'action agent' (collect information, have a plan and take action) he was more the victim role (stuck in emotional paralysis for a long time) - this is not me being critical...

After a long time we found a groove....I never saw myself as his carer as I shared that responsibility with his mother and brother....the shared load lasted for years and then when we split he became fully 100% independent! We then came together again and that was just pure bliss....100% partner for me and 100% awesomeness....I learnt WE define our roles....

Glor

[jscott92064]

My husband and I were married 10 years before his injury. We are a little over a year post SCI and it is getting easier. We are able to communicate how we feel about what's changed in our lives and that's what makes it still a happy marriage, despite this challenge.

[mcwriter]

Wow, let me sort...I met my husband in 1986, and about a year later-ish he was in a rollover accident while I was out of state. They told me he had a head injury and possible spinal injury and was asking for only me. I flew back already preparing myself for the worst and no spinal injury and a slightly quirky head-thing. We got married in 1988, and hi9s injury was due to surgery gone awry after a lower back injury in 1994. Our kids were very small then so they don't remember him before.

Anyway, about the carer thing. Really I don't feel like a carer at all. Some things might be considered what a caregiver does, but I have never thought of it that way. It is interesting that you should mention it though, because there seem to be quite a few discussions about this subject on here, and relationships vary. To me helping with even the most basic of personal bodily functions is just natural in the scheme of things. At times he has been a little embarrassed, but I love him and there is no reason to be embarrassed or uncomfortable. I imagine that if he was post-injury when I met him that things would just fall into place as you become comfortable with each other and become increasingly intimate. If he were used to having a caregiver and then I came along, there would be a transition. I think, the more intimate you become with your relationship, I would not want there to be anything that is off limits, but that's just how we are.

You don't think of yourself as a carer, you seem to take things in stride and I think this is great in establishing a strong relationship.

[Spinner]

mcwriter, on 10 February 2011 - 10:06 PM, said:

Anyway, about the carer thing. Really I don't feel like a carer at all. Some things might be considered what a caregiver does, but I have never thought of it that way. It is interesting that you should mention it though, because there seem to be quite a few discussions about this subject on here, and relationships vary. To me helping with even the most basic of personal bodily functions is just natural in the scheme of things. At times he has been a little embarrassed, but I love him and there is no reason to be embarrassed or uncomfortable. I imagine that if he was post-injury when I met him that things would just fall into place as you become comfortable with each other and become increasingly intimate. If he were used to having a caregiver and then I came along, there would be a transition. I think, the more intimate you become with your relationship, I would not want there to be anything that is off limits, but that's just how we are.

I find it fascinating that you say that you don't think of yourself as a carer because it was your many posts about being a carer (When the Carer Gets Sick, Lightening Things Up, Surviving Carers Burnout) that made me wonder about this subject.

FYI, our relationship is about as intimate as relationships get and as far as I am concerned nothing is off limits, that is how we are as well.

[mcwriter]

I do use the term, carer a lot, but it is more to be clear about from standpoint I am talking from, since there are both those with SCI and AB's who read the posts.

Even with spouses and fiance's and SO's, the relationships vary and I can relate to some of the different situations other's present when they talk about the different tasks they perform in the care of another.

So when I type I am trying to think of who might be reading, from where they may be coming from, and how can I relate some situations to what they may be going through. There are a lot of people who, by choice do not perform care tasks that are more personal and this is done by outside help, and some who perform some tasks, but they are new and have not worked out all the choices in their relationships yet.

Using the term "carer" fits the category. If I were to use just the term "spouse", I am thinking that those who are not actually married might not even read something that might possibly be helpful.

[Barbie4]

jscott92064, on 10 February 2011 - 09:15 PM, said:

Rainia - you sound like you have an awesome man there!

My husband and I were married 10 years before his injury. We are a little over a year post SCI and it is getting easier. We are able to communicate how we feel about what's changed in our lives and that's what makes it still a happy marriage, despite this challenge.

We were in the same situation. We had been married nine years and had three kids when my husband had his accident. The first couple ofnyears were really tough, and we still struggle. We have both had to take our marriage vows to heart and are still very much comitted to each other. We have since had another baby who will be two this spring. Every day is an adventure. Sometimes I think our marriage is harder work now but the best things in life always take the hardest work.

[in love with a paraplegic]

hi
I met my fiance post injury 32 years. we were friends first then good friends then fell madly in love. I know this sounds silly but i dont see him as disabled even though i dont like using that word. we have a brilliant relationship. I met him as he is now and because he has accepted it we dont have any of those issues. We laugh about his spasms and when he gets cross with his legs when they get stiff or active.
But the serious side he has to look after himself and watch for A D symptoms etc etc but I have resaerched alot of stuff for myself so im aware of it also.
I feel so blessed to have met him and my two daughters love him to bits and he has brought something so special into our lives.

[Kdev]

I met my fiancee 23 years post his SCI injury. I am not his carer, he is very independant and was living alone before I moved in with him. Just like I'm in love with a Paraplegic, we too were just friends then good friends, then fell madly in love with each other. We will be married in 4 months. I do not see him as disabled at all. Yes I do things for him like laundry and cleaning, but its easier for me and anything I do to help him out, I do, just because I love him so much. but he does just as much, like all the cooking, so we balance it out. It took me a bit to adjust to his lifestyle, but not long at all, and it's second nature to me now. I dont think twice about anything that has to do with helping him, ever.

;)

Edited by Kdev, 04 March 2011 - 08:59 PM.

[Lindz]

Kdev, on 04 March 2011 - 08:57 PM, said:

I met my fiancee 23 years post his SCI injury. I am not his carer, he is very independant and was living alone before I moved in with him. Just like I'm in love with a Paraplegic, we too were just friends then good friends, then fell madly in love with each other. We will be married in 4 months. I do not see him as disabled at all. Yes I do things for him like laundry and cleaning, but its easier for me and anything I do to help him out, I do, just because I love him so much. but he does just as much, like all the cooking, so we balance it out. It took me a bit to adjust to his lifestyle, but not long at all, and it's second nature to me now. I dont think twice about anything that has to do with helping him, ever.

;)

@ Kdev: Reading your post was almost as if I was reading about my own relationship.

I met my boyfriend 10 years after his injury. We met online and while I "knew" he was disabled, we didn't get to the "details" until a few weeks in.

He is a T8 incomplete and very independent. When we met he lived on his own, drove, worked a full time career, and did not hire any outside help for housekeeping or personal care. We dated for 2 years before moving in together and I have never seen myself as a care giver. We share all the domestic chores of owning a home: I do the laundry because we have at top loading washer/dryer - but he does all the folding/putting away. We have hardwood floors but neither of us sweep - we let the Roomba do that (best money ever spent!). And we do almost all the shopping and cooking together since we both enjoy being in the kitchen. (The first time we went grocery shopping together he made a joke that his chair doubled as a shopping cart... I thought I was going to choke I was laughing so hard.)

[Simba]

in love with a paraplegic, on 18 February 2011 - 03:33 PM, said:

hi
I met my fiance post injury 32 years. we were friends first then good friends then fell madly in love. I know this sounds silly but i dont see him as disabled even though i dont like using that word. we have a brilliant relationship. I met him as he is now and because he has accepted it we dont have any of those issues. We laugh about his spasms and when he gets cross with his legs when they get stiff or active.
But the serious side he has to look after himself and watch for A D symptoms etc etc but I have resaerched alot of stuff for myself so im aware of it also.
I feel so blessed to have met him and my two daughters love him to bits and he has brought something so special into our lives.

I also met my husband post injury,he was a walking tetraplegic when I originally met him in the late nineties then I remet up with him in about 2007 when I came back from overseas. At that stage he had been in a wheelchair since 2000. We were also good friends before we got into a relationship so I had accepted his disability, but now life is becoming more challenging as I find it hard not to perceive myself as his carer and our relationship is suffering as a result.

[roo]

hi all i met my wife 4 years after my accident and been married 15 years this october this is the best thing that as happened to me,,, they broke the mould when she was made shes 1 in a million ,,

[Mrs. Anderson]

My husband and I were married for 2.5 years when he was in his car accident. Maybe it would have been nice to have had the choice to get involved with someone who has an SCI instead of: SURPRISE! Baptism by fire!

My viewpoint is that I'm either IN or OUT. But whether you are in or out is not a decision that you made once and have to stick to. Some people may feel that already being married before their partner's SCI means they are stuck. Your marriage certificate is just a dang piece of paper. Or if the fact that you made a vow before God is the only reason you are still together you will probably end up resenting your partner in an effort to keep God happy. It's your choice to stay or go; don't forget it. I made my choice, and still agree with my choice every day; it's hard to complain when you think of it that way.

Sometimes when I am out running errands and am rushing home to get started on dinner, or rushing to make it home in-time to cath or do BP on schedule, I have little mini-panics. Sometimes I am SO tired from working all day and then having to do the household shopping only to go home and do more work. A couple of times I've imagined what it would be like to just keep driving. Literally just keep driving the car until it runs out of gas. And then I thought about it, and I made my choice again. I'm either IN or OUT. Like I said earlier, you probably don't just make this choice once; there are always times when you'll be exhausted and wonder if this is really the life that you want.

I'm IN because my husband is my other half and I can't even fathom having a life without him. He's the best thing that ever happened to me!

[pinkcloud]

Hi

After injury, which to me is great because I dont have what me body was like before to compare meself with, although he knows what I looked like due to pictures etc. that pressure to look 'more perfect and toned' isnt there and you know what, its a relief. I always make sure I look nice for him - even though he has seen me in some right unattractive states. And this is a first for me and bought me freedom i never gave meself pre-sci.

I love all me friends dearly but I find the ones I made after injury deal with how I am now better to be me true self with - as they never knew any different. Me others well they are lovely and i love them to bits but i always kind of try to make sure they dont see me on a bad day as they get soooo sad. As times getting on its easier for them. Of course them whom too are now ill like to be with me as I understand what their going thorough.

Whatever the situation, nothing in life is guaranteed so make the best of what I have and live in the minute is my rule. it works good for me anyway

[mellowgator]

i was only married 2 weeks before i became injured. my husband and i were still in our honeymoon phase and hadn't established our rolls in the marriage yet. i am still amazed to this day that he stayed with me. the injury definately changed things for us but we didn't let it ruin our lives. we now have 2 teenaged daughters. it's been a good run and i am very grateful to my husband for his unconditional love.


mellowgator

[BondGirl]

Totally agree with 'In love with a paraplegic' and 'Kdev' - I don't see my guy as disabled! We're partners, lovers, and that's it. I don't do anything more for him (well, maybe sometimes!) than I would if he was AB. He was also independent before I met him and despite being a T2 complete does everything for himself - BP, cath, the lot. I just keep an eye out for pressure sores on his back - he checks everywhere else.

Occasionally he jokes with me that I should do my 'carer' duties and 'get me a beer, wench'!!! To which I laugh and either say get it yourself or, more usually, go and get it with a flourish and a wiggle

Hehehe

Nearly forgot to say! We met after SCI ... and am sure that makes a difference. The life adjustments have already been made. Acceptance, love and embracing the life we have is what's important.

Edited by BondGirl, 02 June 2011 - 06:16 AM.

[smg]

I met my boyfriend 15 years after his SCI. So I've never known him any other way. I'm not sure that I'd want to either. I don't think of him as being disabled, sometimes I even forget he's in a wheelchair. He always asks me "Did you ever think you'd be with someone in a wheelchair?" and my response is "No, but I'm happy I am".

[paul1404]

smg, on 07 June 2011 - 08:29 PM, said:

I met my boyfriend 15 years after his SCI. So I've never known him any other way. I'm not sure that I'd want to either. I don't think of him as being disabled, sometimes I even forget he's in a wheelchair. He always asks me "Did you ever think you'd be with someone in a wheelchair?" and my response is "No, but I'm happy I am".

You should have said " what wheelchair"!

roo, on 18 March 2011 - 06:20 AM, said:

hi all i met my wife 4 years after my accident and been married 15 years this october this is the best thing that as happened to me,,, they broke the mould when she was made shes 1 in a million ,,

You been in the casino again Roo and just looking for brownie points!

met my Mrs 5 months after my accident 3rd Jan 1976

[Bendergirl]

I met my BF lets see 1 1/2 years after his injury and I am very happy with how things are going and it is new relationship but it just feels 100 percent "right" He was actually engaged after his accident to his gf and I am very happy she left the picture because he deserves someone better...like me!!!! jk

[cmbrownjones]

I met my boyfriend before his injury in high school. We reconnected 9 years after his accident through facebook. He is still the same person I remember back then. I wish I would have dated him back then because him and I are like two peas in a pod!

[chat]

I met my husband 19 years post my SCI. We got married 3 years after and were blessed to have a wonderful daughter. Now, we're living a very happy and normal life together. I consider him as God's greatest gift to me...including our baby.

[MountainWard]

My wife is a T12 complete, she was in a car accident Oct 2000. The wife and I met and married Nov 1992, we had a daughter born Sept 93, Kerry Anne who was born with a cancerous brain tumor. Kerry lived 1 month and 17 days, after that things just did not work so well for us, we were sad all the time. The wife went to visit her mom and later filed for divorce. In 96 she had a son and made me his Godparent, they visited me and I moved to the area they lived in. She married another man and had another son, and then in 2000 was in her auto accident leaving her a para, at which time she found out she was pregnant with another son. Her husband soon left her and she called and asked me to visit. We got back together and remarried. We have had two more children since and have been remarried for 11 years now.

I guess I technically married my spouse before and after her SCI. We have 5 beautifull children and a tough but great life...

Edited by MountainWard, 15 September 2011 - 04:20 PM.

[DannyR]

We were married for 24 years before my SCI. I am very lucky in that there was never a doubt my wife was in it for the long haul.At the hospital the drs. nurses and I tryed to get her to go home for some sleep but she spent every night by my side. About 10 days in the hospital my wife left for an eye appointment and a young nurse come in to show me how to bathe...really...I sent her on her way explaining that we had already figured it out. I have been blessed that because of my wife the more personal things were easy to take on because we already had that strong bond.I pretty much take care of myself but when I need help she is always there with a good attitude and never a complaint.

Interesting question though because I just woke up 1 day with a stiff neck that progressed very quickly to me losing the use of my hands and the ability to walk without assisstance. The drs. told me the injury was caused by a traumatic accident...the only thing we could figure out was that I was hit by a car when I was a kid and things just progressed over time or I did something to make things go bad.

[aberonieduderoo]

I met my fience before his accident, at work, at the time he was engaged to another officer. after his accident she left him and he started dating a nurse from the hospital he was in after his aacident. so I waited...lol. he moved 1000kms away to Vancouver BC, in Nov of 2010 him and his 'nurse' broke up and I swooped in! we have been unofficaly dating since dec, and officaly since april. he is the most amazing man I have EVER met and I thank my lucky stars for him every day!!!! I cant wait to be his wife and start our new life together.
so I met him before, fell in love after
I am looking very forward to decusions on this site! I thank eveyone who puts the time in to concet with others alike!

[Mugsy123]

Spinner, on 09 February 2011 - 01:51 PM, said:

This topic has been discussed before, but after spending more time on this board, and being involved with my SO longer, I thought I might revisit it. My fiance was nearly 20 years post injury when we met. I provide for his physical cares four days a week and do all the physical stuff in the household. I have never seen myself as his carer, I see myself simply as his fiance. I can't help but wonder if this is at least partially due to the fact that he was so far out when we met and we never had to make the adjustment from an able bodied couple to a couple with one able bodied partner and another living with a disability. I am curious to hear others' thoughts on this, both those who met their SO after SCI and those who went through the injury as a couple.

My boyfriend and I met over twenty years ago (about five years after his injury). We dated for about a year, then broke up (my idea-lots of reasons, all of them dumb now in retrospect). I always wondered about him and was afraid that I had really blown it, having let him get away. Anyway, fast forward twenty something years and we are back together, this time for good!
Both of us got married and divorced in the years we were apart and now realize that we were "meant to be". Sometimes not easy, but ALWAYS worth it!

[wheelman]

We were married for 12 years before my injury (c5-6) We had 2 boys before the injury also, but they were fairly young at 7 and 4 at the time. Now about to head into my 10th year in the chair; still married and i hope happy....many of our AB friends(about 80%) are now divorced; so its not all doom after a major injury, i spent 12 months in hospital post accident .
Every one reacts different to an injured person; and sometimes not in a good way which can result in a broken marriage ..i guess ive been lucky and have a very supportive wife and boys.