9 replies to this topic

[Little J]

Hey there, it's been a year and 3 months since my bf's SCI and things were getting better in the beginning because he was learning how to walk with some prosthesis's, but now with the arthritis's he has in his hips he hasn't been walking for months. He has even run out of therapy sessions in the rehab place that he's been in for one year. On top of all that his hope, and faith in just wanting to live seems to be fading more, and more each day. I talk to him, and I beg him, and I plead with him, but he just keeps telling me that he doesn't want to be in a chair, he continuously asks me, what kind of a life are we going to have? I tell him to give it a chance and we'll both find out together, but that just lasts for about a few days and then he's down again. I find myself looking for uplifting stories to tell him, like the ones I find in this forum and he hears me out but again it lasts for so long. We've been together for 8 years only one year dealing with his SCI and not even really to the full effect of it, because he isn't home, he is still in the rehab. Which is another thing that scares me, if he's like this and he isn't even home, I think he'll just be worse once he is home, and I don't see how that's fare to either one of us, especially since I'm the only person aside from his parents who is by his side, day in and day out. My friends tell me he needs to see someone like a priest or a therapist, has this helped anyone out there?, is there a book he can read that will open up his heart again in wanting to live?, can anyone give me any kind of advice I would truly appreciate it, Thanks.

[Sammie]

I would first suggest you do two things: get him on this site and let him ask some questions. He will get some very very supportive and informative information and insite into others living in a chair, and how well they have adapted, and how they adapted etc. They will be able to inspire him, give him the hope he needs and even help pull him out of his self pity. (that is not a criticism, just a fact that when people are as down as he is they tend to do that, and it interferes with their ability to move forward).
The other suggestion is to find a support group in your area. they will help find medical and therapy resources that adapt to his financial situation, and the group meetings for couples are very beneficial.
You may have to pre-arrange all this since he is so down right now by setting up his site so all he has to do is log in; and find the group and just take him the first time so that he goes, but after that he can be on his own.
He is frustrated, afraid and terribly disappointed about things right now, and is going through grieving steps (there are actually 5, I see anger and depression predominantly in your description of things), and so remember that you almost have to address this as you would someone who has lost someone, because that is really what has happened. He has lost who he was, and cant yet see what he can be. My BF took a few years according to him, to get to a point where he wanted to change the quality of life he had for the better and stop waiting to die, or as he put it "just live it out". Now he does almost everything he wants to do, and in many cases better than you or I could do it.
I feel for both of you so much, this is a really tough time you are going through, but dont try to do this without knowledgable help!

I forgot to say about the faith: that will come back once he can see the trees through the forest. When he is in the anger stage it is common to turn from the faith you have, and blame God and anyone else around. As he grows stronger and more positive his faith will start to return or even grow better than it was. I again am speaking from the experience my BF has shared with me, and I can tell you he has a very strong faith now, but his Mom tells me that for awhile he blamed God for everything. He now says that God did nto do it the choices that led to the accident did, and it is his job to not waste the life he has been given.

[nomis]

I'm wondering how come your b/f is still in rehab and not home after 15 months. That's long enough in institutional care to drive anyone bananas. I don't know the facts so this could all be way out of line but I'm thinking he'd get into his motivation and appreciation for life a heck of a lot easier at home.

Why can't he attend ongoing rehab from home?

He might very well benefit from seeing a counsellor but I'm confident the aim would be the same, to get him back home and involved in "real life".

[Little J]

Sammie, on Jan 22 2009, 09:01 PM, said:

I would first suggest you do two things: get him on this site and let him ask some questions. He will get some very very supportive and informative information and insite into others living in a chair, and how well they have adapted, and how they adapted etc. They will be able to inspire him, give him the hope he needs and even help pull him out of his self pity. (that is not a criticism, just a fact that when people are as down as he is they tend to do that, and it interferes with their ability to move forward).
The other suggestion is to find a support group in your area. they will help find medical and therapy resources that adapt to his financial situation, and the group meetings for couples are very beneficial.
You may have to pre-arrange all this since he is so down right now by setting up his site so all he has to do is log in; and find the group and just take him the first time so that he goes, but after that he can be on his own.
He is frustrated, afraid and terribly disappointed about things right now, and is going through grieving steps (there are actually 5, I see anger and depression predominantly in your description of things), and so remember that you almost have to address this as you would someone who has lost someone, because that is really what has happened. He has lost who he was, and cant yet see what he can be. My BF took a few years according to him, to get to a point where he wanted to change the quality of life he had for the better and stop waiting to die, or as he put it "just live it out". Now he does almost everything he wants to do, and in many cases better than you or I could do it.
I feel for both of you so much, this is a really tough time you are going through, but dont try to do this without knowledgable help!

I forgot to say about the faith: that will come back once he can see the trees through the forest. When he is in the anger stage it is common to turn from the faith you have, and blame God and anyone else around. As he grows stronger and more positive his faith will start to return or even grow better than it was. I again am speaking from the experience my BF has shared with me, and I can tell you he has a very strong faith now, but his Mom tells me that for awhile he blamed God for everything. He now says that God did nto do it the choices that led to the accident did, and it is his job to not waste the life he has been given.

Thank you so much for your words they were very comforting, I'm going to see if I can get him to join the forum. I just had a question for you, the 5 stages you had mentioned what are they exactly so I can know more or less where he is mentally.

[Trinity]

Little J, on Jan 28 2009, 06:12 AM, said:

Thank you so much for your words they were very comforting, I'm going to see if I can get him to join the forum. I just had a question for you, the 5 stages you had mentioned what are they exactly so I can know more or less where he is mentally.

Stages of grieving
Although they were originally designed as a model of grieving about death they are relevant for any kind of loss

[Little J]

trinity, on Jan 28 2009, 01:19 PM, said:

Little J, on Jan 28 2009, 06:12 AM, said:

Thank you so much for your words they were very comforting, I'm going to see if I can get him to join the forum. I just had a question for you, the 5 stages you had mentioned what are they exactly so I can know more or less where he is mentally.

Stages of grieving
Although they were originally designed as a model of grieving about death they are relevant for any kind of loss

Thank you so much for the reply!

[teaser]

hi there - yes, would thoroughly recommend counselling! and not just 6 sessions, grief is long-term stuff so find somewhere that can see him for a while and let him let off steam regularly. i am amazed at what people learn to live with and how people do adapt and find meaning in life. these are early days - 6 months to 2 years is the length of time for "normal" grief, meaning that people generally reach a point of coping by that time. but an SCI is not "normal" grief i don't think, cos is ongoing loss and also the first 2 years are "recovery" so you don't really know what you have to grieve for until you've stabilised and all that.

really important for you to get support as well - this forum is great, just to know that there are others out there who are supporting partners/friends etc and needing support themselves. get him on here! he'll probably hate it to start with but that's ok,

PM me if that would help,

cheers

Teaser

[Tim13]

He needs to get out of rehab and get on with his life, he'll probably find that things aren't nearly as bad as he's imagining.
I recall going through those same emotions while in rehab, everything straightened out once I got home and was able to face all the issues instead of just worrying about the unknown.

[irish]

too much time in any institution really builds your dependance and saps your strength. he needs to be deinstitutionized asap and if you discuss it with him he'll find it out himself. good luck

[andy nguyen]

it takes awhile to adjust for a SCI, average is 2 years from my experience and others. After that time you have realized who you are and accepted as being SCI. But you can get out of of grieve a lot better if you have good understanding SCI. Let him get over this forum to experience it