9 replies to this topic

[Didly]

Hi, my name is Mandy and this is my first post here. I'm not quite sure where to post this so I'm sorry if this is the wrong forum.

3 years ago I met the love of my life... online of all places. At first I felt foolish for 'falling in love' online. I tried to ignore my feelings but it came out that he felt the same too. So started our long distance relationship. Sometime after we got together he casually mentions he was in a chair. I thought chair? Well duh you're sitting at your computer. He laughed and was like no. I have a spinal cord injury from a motor vehicle accident 8 years ago. I was at that time thinking, spinal cord injury, whaaaat. He then goes into detail about his daily life and that he couldn't walk and never would be able to walk. It was like being doused in cold water. He was supposed to be moving to MD to be with me. I had envisioned walks on the beach, trips to the mall hand in hand, roller coasters. Now i had to rethink everything. I came to the conclusion it didn't matter. I was totally in love with him. Several more months pass and I purchased a plane ticket to visit him in Texas prior to him moving to MD. I was nervous. Would we get along in real life? And frankly I was intimidated by the sounds of his disability. But once arriving in Texas and being near him and seeing him live his daily life... it only made me fall in love with him more. His disabilities didn't matter to me and faded into normal everyday life. I left after 2 weeks and came back to MD to get things ready for him to move. January 9th of this year i flew to Texas and we caught a greyhound back to MD together. Since then it's been a roller coaster of not just learning to live with somebody "new" but going from fiance to fiance/care giver. Now don't get me wrong. I would lasso the moon for him if I could, but the sheer amount of effort it takes to care for someone life with a sci is, at first, really daunting. Its been almost 8 months now and we are setting in to a new routine. I can tell his medications by sight. I can rattle off his list of 11 medicines to a doctor with ease. I can flush his gtube and bolus his jevity. I can cath him and do his bowel program. I prepare his food, do his laundry and help him bathe. I have no problem doing any of this because where he was living prior to coming to MD he was in a really crappy assisted living community who didn't help him with even the basics of daily living. However, he has major self esteem issues and he feels like a burden to me. I think this stems from his prior girlfriend (who was with him pre sci and some post sci) telling him that she felt like his mother when he returned home from rehab. The thought that he thinks he's burden to me saddens me greatly and no matter what I tell him and how many times i hold him and try to reassure him he brings it up at least a couple times a week. He keeps saying 'what's in it for you' and 'why put up with all this?'.

So here's my question. How do I convince him that he is worth something and he's not a burden? I know living with a sci is hard. I can't imagine his pain. All I want for him is for him to be happy and moderately healthy. All I require from him is love.

[rue2you]

Can I ask how he managed to do all of this stuff without you? You said he was in assisted living who didn't help him, so does that mean he did it himself? These questions are important if you don't want to just be caretaker.

[Didly]

When they didn't do it he didn't do it either. They weren't there to give him his shower... he didn't bathe. They were late or didn't bring dinner... he didn't eat or drink. They weren't there to administer his meds.... he didn't take them. Also I never said I didn't want to be his caretaker. I very much do. He's tried his hardest to keep me out of his medical care. Only recently did he allow me to start his bowel program with him after his physio cided him hard about him not doing it (he would go up to 5 weeks without a bowel movement). I chose to participate in his care because it keeps him healthy. And that in the long run is what's most important.

Edited by Didly, 25 August 2011 - 05:56 AM.

[qbounce]

I think what Rue was asking was in relation to ALSO being his carer, you should know what limitations he's able to do for himself.

How long ago was his injury, out of curiosity. A high level quad can still do quite a lot . . . . possibly even laundry. Shhhhhhhh, don't tell him I told you that, though.

Anyway, give him some responsibilities so he doesn't feel like such a burden. Allow him to practice trying things on his own . . . . . you, and he, may be surprised by the results.

[Didly]

His injury was in 2002, left him a c-7/8 incomplete quad. He had no sensation below his nipples. He can use the first 2 fingers on each hand and has very limited use of the other 3. However, before his injury he was diagnosed with MS. This was already effecting his mobility even before his accident.

He does do some things himself. He can get dressed by himself. He can shave and shave his head. However he is slowly losing function in his arms hands and neck due to MS. He falls a lot because he cannot use his power chair in our current living situation. It's not that he can't do those things, it's that if he tries he's more than likely going to end up hurt from falling again. He does what he can independently, he often tries to do things he knows he can't before getting me involved.

I know why he feels like a burden. But what I needed help with is things to say/do to help him feel better.

[Ted 303]

hi Didly,

I agree with qbounce the more he can do the better it wil make both of ye feel better, its sounds like ther needs to be aceptance as well on his part that lifes has changed & its best to get help from someone who loves him & he loves back. After all tell him everybody in every walk of life wheelchair or standing needs help at some point & anyone that say otherwise is a lying! hope this helps.

Ted

[qbounce]

 Didly, on 25 August 2011 - 09:56 PM, said:

His injury was in 2002, left him a c-7/8 incomplete quad. He had no sensation below his nipples. He can use the first 2 fingers on each hand and has very limited use of the other 3. However, before his injury he was diagnosed with MS. This was already effecting his mobility even before his accident.

He does do some things himself. He can get dressed by himself. He can shave and shave his head. However he is slowly losing function in his arms hands and neck due to MS. He falls a lot because he cannot use his power chair in our current living situation. It's not that he can't do those things, it's that if he tries he's more than likely going to end up hurt from falling again. He does what he can independently, he often tries to do things he knows he can't before getting me involved.

I know why he feels like a burden. But what I needed help with is things to say/do to help him feel better.

Telling him you don't mind helping him all the time is the as good as you can do. But it's no consolation for someone who wishes he could still do more as he continues to lose function, because it's his insecurities your trying to quiet.

I think you're love and dedication will eventually sink into his head, though. It resonates here loud and clear.

[rue2you]

 qbounce, on 28 August 2011 - 04:28 AM, said:

 Didly, on 25 August 2011 - 09:56 PM, said:

His injury was in 2002, left him a c-7/8 incomplete quad. He had no sensation below his nipples. He can use the first 2 fingers on each hand and has very limited use of the other 3. However, before his injury he was diagnosed with MS. This was already effecting his mobility even before his accident.

He does do some things himself. He can get dressed by himself. He can shave and shave his head. However he is slowly losing function in his arms hands and neck due to MS. He falls a lot because he cannot use his power chair in our current living situation. It's not that he can't do those things, it's that if he tries he's more than likely going to end up hurt from falling again. He does what he can independently, he often tries to do things he knows he can't before getting me involved.

I know why he feels like a burden. But what I needed help with is things to say/do to help him feel better.

Telling him you don't mind helping him all the time is the as good as you can do. But it's no consolation for someone who wishes he could still do more as he continues to lose function, because it's his insecurities your trying to quiet.

I think you're love and dedication will eventually sink into his head, though. It resonates here loud and clear.

Agreed.

[snowqueeneh]

I told my husband that I just need to feel appreciated. He does all kinds of little things for me. He always buys me beautiful flowers, he rubs my feet (even though he can't move his hands at all - it's more like a tickle ), and all sorts of other things. When times get rough and I can't hide my frustrations I tell him that I'm just stuck in the moment and I will get over it. I always get over it and with time he has realized that. I also have to keep my own advice in check when it comes to his moments as well.

[Ayo]

Hi Didly, i think i have to give it up to you; your courage,resolute, care and total concerns for your guy, Kudos ma'am... However, i think you should continue with your reassuring him of your genuineness and straight-from-the-heart concerns for his general well being and your total love foe him, with time he'll learn to accept everything the way it comes. Please never give up, i wish you two the very best...