[Trishtack]

Hi - Everyone was so nice when I posted here following my husband's illness. He is paralyzed from the navel down. He was simply walking up the stairs on Sept. 7, 08 when he got a leg cramp and 15 minutes later he was paralyzed from the navel down. We finally got a diagnosis in Nov of Fibrocartilagious embolis. He came home from rehab on Nov. 5th. I bought a new house and had it upgraded to meet all of his needs and we moved in in Feb. Since he came home in Nov. he has not done anything for himself. I wrote prior and got advice but things were so unsettled it was hard to implement. I am hoping you all can help me with more advice. We have been married since 01 and together since 98. We have a 3 yr old daughter. I work a 40 hour analyst position during the day and teach 4 college courses online at night. I also care for my elderly ill parents who live 30 minutes away. He has not managed one issue of his illness since it occurred. I gave up our 4 yr old house and purchased a new one and upgraded it becaues he didn't want a stair lift or a people mover. I have exhausted all of our savings plus to give him everything materially he needs to help himself. He has a bedside potty and a Mariner shower chair with potty capacity as well. He has a roll in 8 x 8 shower with thermostatic hand held shower and a roll under shallow depth sink. He caths in bed and waits for me to empty his urinal. He will wait hours longer to cath if for some reason I have an emergency and can't get home on time. I have done his bowel program every night since he left rehab. I carry him all his drinks and meals. Since we moved to the new house 4 weeks ago he has only gotten out of bed two days and that was when his family visited. Well except to transfer over to the bedside potty. He says he cannot do his own bowel program. He also says it is too difficult to cath into the toilet or sitting up. I am constantly exhausted and have been really struggling emotionally this last week. There is no initimacy between us. He won't give me a hug or kiss and certainly nothing beyond. He has been somewhat initimate with me three times since he came home but I fear it is only because he thinks he has to occasionally. I have made sure he understands that I am here for the long haul and I never say no to anything he asks for. But emotionally I am starting to die from no human contact or kindness (and I HATE that I am complaining for myself when he is paralyzed). I tried explaining it to him and he just isn't interested in hearing it. Our marriage was struggling prior to his illness and we had decided to divorce but I thought we had came back together duing his hospital stays. Any advice would be appreciated.

Trish

[longhaul]

Hi Trish, You shouldn't do anything for him he can do himself like his BP and urinal. He came home from rehab and he can't do his own BP what did they do in rehab?

[Trishtack]

longhaul, on Mar 22 2009, 10:49 PM, said:

Hi Trish, You shouldn't do anything for him he can do himself like his BP and urinal. He came home from rehab and he can't do his own BP what did they do in rehab?

I am honestly not sure anymore. They taught him to cath and to slide board transfer.

[longhaul]

He should go back to rehab and get his independents if not get him an attendant, according to where you live the state can help with the cost.

[RoyC]

It seems to me that he is just being lazy im sure he is quite capable of doing the vast majority of things himself if he is only Paralysed from the belly button down. we dont know the full details of his abilities but he could also be suffering from depression maybe this is the cause even if he is he should be still doing the basics such as cathing and bowels the more u do for him the less he will want to attempt himself i really dont know how you are managing your hectic life at the moment and if as u said your new home is accessable why does he not use the bathroom ? can he drive or does he not want to at the moment i really feel for you and dont really know what else to add except i hope things get better in the very near future coz this man could be on the point of driving you away im sure you will get a lot more helpfull advice here so i can only wish you the very best Roy

This post has been edited by RoyC: 23 March 2009 - 09:03 AM

[Slowlegs]

Trishtack, on Mar 23 2009, 03:31 AM, said:

Hi - Everyone was so nice when I posted here following my husband's illness. He is paralyzed from the navel down. He was simply walking up the stairs on Sept. 7, 08 when he got a leg cramp and 15 minutes later he was paralyzed from the navel down. We finally got a diagnosis in Nov of Fibrocartilagious embolis. He came home from rehab on Nov. 5th. I bought a new house and had it upgraded to meet all of his needs and we moved in in Feb. Since he came home in Nov. he has not done anything for himself. I wrote prior and got advice but things were so unsettled it was hard to implement. I am hoping you all can help me with more advice. We have been married since 01 and together since 98. We have a 3 yr old daughter. I work a 40 hour analyst position during the day and teach 4 college courses online at night. I also care for my elderly ill parents who live 30 minutes away. He has not managed one issue of his illness since it occurred. I gave up our 4 yr old house and purchased a new one and upgraded it becaues he didn't want a stair lift or a people mover. I have exhausted all of our savings plus to give him everything materially he needs to help himself. He has a bedside potty and a Mariner shower chair with potty capacity as well. He has a roll in 8 x 8 shower with thermostatic hand held shower and a roll under shallow depth sink. He caths in bed and waits for me to empty his urinal. He will wait hours longer to cath if for some reason I have an emergency and can't get home on time. I have done his bowel program every night since he left rehab. I carry him all his drinks and meals. Since we moved to the new house 4 weeks ago he has only gotten out of bed two days and that was when his family visited. Well except to transfer over to the bedside potty. He says he cannot do his own bowel program. He also says it is too difficult to cath into the toilet or sitting up. I am constantly exhausted and have been really struggling emotionally this last week. There is no initimacy between us. He won't give me a hug or kiss and certainly nothing beyond. He has been somewhat initimate with me three times since he came home but I fear it is only because he thinks he has to occasionally. I have made sure he understands that I am here for the long haul and I never say no to anything he asks for. But emotionally I am starting to die from no human contact or kindness (and I HATE that I am complaining for myself when he is paralyzed). I tried explaining it to him and he just isn't interested in hearing it. Our marriage was struggling prior to his illness and we had decided to divorce but I thought we had came back together duing his hospital stays. Any advice would be appreciated.

Trish

Hi Trish,
sorry to hear you are having so much trouble. To be honest he sounds like he is not only paralyzed from the waist down but the neck up. Honestly I think I may have gone through something similar but perhaps there is something else I would like to add.

Firstly, when I had my injury I found it hard to deal with my new body. I was 18 and my body was in my eyes vastly deformed and useless. I didn't even want to look at myself let alone touch my body so would also ignore my basic cares such as washing, colostomy, bladder cares, etc. This could perhaps explain the intimacy issues as he could also feel pretty un-sexy right now.

Secondly, perhaps he views his accident as the catalyst that "saved your marriage" and he may subconsciously think that the longer he needs your help the longer you will stay.

Thirdly, he could also be trying to drive you away as he could still want the marriage to be over. I think you sound like you still love him and you have done and given a lot for this man. I feel you should contact the rehab facility and discuss just what they have taught him there. Once you know that you can apply that to what he should and can be doing. Other than that I feel you perhaps need counselling as well.

Hopefully these points could be of help to you.

[ems]

I might start by phoning up his rehab centre and ask for advice... you could also ask them what he should be capable of. Staying in bed for such long periods of time wont be helping his skin much, but worse than that really, his well being, and your well being too.

You said you were having problems withint the relationshoip before his accident, maybe you need to ask him whether he wants a wife or a carer, caring for someone can be hard work, and if your his wife, the caring side needs to come second place. Alot of people here have a spouse that is also their carer, and I think they would agree on this. Maybe, if money can allow, get a carer in to take over your caring role. He may not like it, as he is used to you doing all the things for him, but he may then think twice about paying for someone to empty his commode!


It can be really hard to motivate someone to do things for themselves when they dont need to, or dont want to, maybe you could pick one thing at a time that you want him to do for himself and start taking your help away slowly.

Does he have anything he enjoyed doing before his accident that he could still do now, and anything you could do together? I realise you hours are well spent already but could you give yourlsef a two hour slot where you do something together? Maybe get afriend to have your little girl once a week so you can have time together to enjoy something?
Or if he doesn't want to, why dont you give yourself a couple of hours a week free time to be yourself again. Go visit your friends, go shopping, sit in a park and read a book. Everyone needs a their own space wsometimes!!
It did take me a while to start enjoying the things that I had poreviously done, I was scared to try them, and thought it wouldnt be worth it, as I couldn't do them the same way. Things do take time, but they take longer and become further from reach if you dont try ;)

When I go into spinal wards as a wheelchair skills trainer, some are there 5 minutes before the start raring to go, and some get wheeled into the the hall when theres completely no reason for it. Some are scared, some just basically dont want to be there, even though its completely voluntry. Some take weeks and weeks of sessions to get to the same stage as others in the group. It doesnt seem to to be more apparent in any one injury group, ie. higher injury or lower injury, its just how that person is reacting and accepting or otherwise to their trauma.

What SCI level is he? Did he have any other injuries that might be stopping him?

This post has been edited by ems: 23 March 2009 - 10:50 AM

[Jax]

longhaul, on Mar 22 2009, 09:49 PM, said:

Hi Trish, You shouldn't do anything for him he can do himself like his BP and urinal. He came home from rehab and he can't do his own BP what did they do in rehab?

I know from experience that there are some "rehab" centers that don't have a clue what a bowel program really is, so they may not have done that much on that part.

Trish,
There has to be some level of independence that he is capable of handling. Every situation is different, so there may be something I'm missing. If I'm not missing anything, though, then the depression advice may be true, and it could also be laziness. Depression sounds more the case though from the original post on this thread. How to get him through it is a difficult question, and will likely require help from family and probably at least one doctor.

ems makes a point too. If you were having troubles prior to his paralysis, then you might need to have a face-to-face with him and ask him if he wants a wife or a carer. He can't get away as fast if he's in bed. (My wife has used that tactic, so I know firsthand.)

[LeahC]

I agree with calling the rehab centre and finding out exactly what he was taught as he could just be lying and being lazy, and it's true - the more you do for him the more he'll let you do!

[qbounce]

Trish,
Your situation paralells mine regarding the marriage. My wife and I had been married 14 years, but were at the end of our divorce, until I had the SCI. Then we tried to get back together and make it wotk . . . . to no avail. If you were having issues BEFORE his injury, they only COMPOUND when something of this magnitude happens.

The only quick advice I can give you first is, cut his bowel program down to every other night. Alot of people here do it every 2 to 3 days just for the break in between.

Next, get you both to a counselor, or get packing. No joke, and good luck.

[sbrown955]

Ditto to all. It sounds like he is massively depressed, and the prior marital problems certainly could be a factor there. Emotional recovery from an SCI can take a year or more, so he is still in that period. (This is why service dog agencies don't want folks to get on the list for a dog until a full year post-injury.)
Contact his rehab center or physical medicine specialist to find a counselor in your area experienced with working with SCI patients. Ask if there are any support groups around (we go to one weekly and it has been a lifesaver--I haven't killed my daughter!). Or ask if there are folks in chairs who act as mentors to newer SCI folks. When my daughter first met a man who had been in a chair over fifty years, with approximately her same level of injury, she exclaimed, "now I know I get to be old," and her attitude improved markedly. Prior to that meeting, she had been convinced in her own mind that she was going to die early (so why bother) and that all information to the contrary was just people blowing smoke at her.
Bowel program can be done every second day easily.
If he won't go to counseling or to a group and things continue as they are, you get to leave him without feeling guilty about it. Being in a chair doesn't make someone a saint, they're the person they were before, only sitting down all the time. There's only so much you can do to help--the actual recovery is up to him.

This post has been edited by sbrown955: 24 March 2009 - 01:37 PM

[wheeels]

I Also agree wih what is being said sounds like he is very depressed and needs some help with this and that help should not come from you. He also needs to start doing things on his own the longer he waits to do things for himself the harder its going to be, he will get weaker and weaker the longer he lays around.

[Trishtack]

Thanks to each of you for your time, advice and caring words. We had two good days this weekend where hopefully we made some progress. He finally got his own wheelchair yesterday and actually spent the evening having dinner at the counter with us and playing with our daughter. He has promised to play again tonight and that would be a record for him to be up two days in a row.

I have decided to hire a caregiver to help with the physical care until we hit the one year mark and then we will evaluate if a caregiver is still needed. I can't be a wife and a caregiver without causing stress and tension in our marriage.

I will be going out of town for three special events between April and July so I will have a few hours to myself and he will be without me for the first time since his illness.

I am embarassed to say I do not know what level his injury is. As it came about without any discernible trauma, no one has discussed levels or complete/incomplete with us.

I am also working to find him some quality medical care in the area. We have located a service that will pick him up and take him anywhere within our country for a small fee and within the surrounding areas for a decent fee.

Yesterday he became so excited when he realized his favorite store (Goodwill) was in our new town. But by the time I had gotten the car parked he backed out of going in. I finally realized that he still feels very much like a "freak" (his words). He is embarassed to go in public other than the rehab facility. Hopefully this is start to fade with time. He will not accept any time of counseling martial or separate. It was never something he would consider and certainly not now.

I can't explain how reassuring it is to have a place and people to turn to right now. Your help is so very greatly appreciated.

Sincerely,

Trish

[Jax]

Trishtack, on Mar 24 2009, 12:34 PM, said:

Yesterday he became so excited when he realized his favorite store (Goodwill) was in our new town. But by the time I had gotten the car parked he backed out of going in. I finally realized that he still feels very much like a "freak" (his words). He is embarassed to go in public other than the rehab facility. Hopefully this is start to fade with time. He will not accept any time of counseling martial or separate. It was never something he would consider and certainly not now.

Trish,

I have another piece of advice for you. I have given others this same advice for many different problems, but mostly for the ones who have that "I'm a freak" mentality. Go buy the movie Murderball. I understand that he's closer to para from your posts, and the movie is about quads, but it has some pretty cool stuff in it. The special features are must-see too. Those guys do stuff I couldn't have even imagined prior to seeing the movie. Most of all, it just shows that there IS life after SCI.

I'm glad he played with your daughter. I hope this is the beginning of him coming around.

Just in case he doesn't start to turn around, here's a contingency plan. (Others here say I'm pessimistic, but I was always told to hope for the best and prepare for the worst, because you never know which way it will go.) If he won't go to counseling, then give him some time. If he's still not doing any better at a yr post injury, then he NEEDS to see a counselor. If he won't, then you have every right to pack up and go.

You have a daughter to think about too, and I know that you love her and want what's best for her. He needs to realize that he has to think about what's best for her too. Regardless of his feelings about counseling, he has to think about his family first and quit feeling sorry for himself sometime. I know I sound cold (and I've been told that I am on several occasions), but I'm just being bluntly honest. He can't mope forever. It's bad for him, and it's bad for you and your daughter. He can fight his fears and get through this, or he can let it destroy him and his family. There's not really much of an in-between. (Unless you are okay with staying with him and being miserable, because that's pretty much the only third option.)

I wish you the best.

JAX

[snowqueeneh]

My husband (Paul) has been injured for 3.5 months now. We have two boys (4 & 6). He is going through a lot of emotions... feeling like a burden and wanting to end his life. He will not take counselling at this moment either.

I said something to him that totally changed his perspective (at least for now). I asked him "What if this happened to your Dad when you were little? Would you want your Dad gone and always asking what kind of man he was and why was I not enough to keep him proud? Or would you rather have your Dad there everyday telling you that you are the reason he is so proud?

That night before he went to sleep he told me he had a lot of thinking to do. I must admit that it's still very rough but his attitude has changed a lot. He feels truly needed again.