I need...help, advice, or maybe just a swift kick in the arse. I know that all three are generally available here. I am sorry for the length of this post. Clearly I have let this build up for too long.

I am just at the end of my rope. Tom has no family here, and when he was injured they were just in a daze, unable to get things done from 1000 miles away and just in shock. There was talk of him not getting any rehab and being sent to a nursing home from which he might never leave. I finally gathered up the courage to get power of attorney and stepped in - found him an accessble apartment and assured his caseworkers that he would have the proper care (meaning me). I told his family I could do this for 6 months to a year; at least he had somewhere to live and a fighting chance. That gave them time to determine whether he would come live with one of them, or one would come here, or that he'd be able to manage by himself.

He had 5 weeks of rehab where they spent all their time dealing with his Stage IV pressure sore, UTI's, MRSA, etc. He was released without ever learning how to transfer or care for himself. So he came to his new home and I learned to change his dressings, use a Hoyer lift, how to do his BP, warning signs of AD, etc. But 13 months post-injury, he still has never learned to transfer so he can't get out of bed. Which is fine, because he doesn't WANT to get out of bed. He lives alone in a two-bedroom wonderfully accessible apartment that he never wheels around in. He does have a caregiver twice a week, so at least I only have to tend to him 5 days out of 7. That only came about because my Mom died in February and he absolutely HAD to find backup care. Even still, I missed her funeral because we couldn't get care scheduled in time.

He watches TV and surfs the internet all day...his only crisis is when the cable goes out. His skin is always moist from sitting, covered with blisters and sores, but of course he doesn't care because he can't feel it. He's already had a week in the hospital with cellulitis and a UTI that required IV antibiotics; I'm sure that will just keep repeating itself. Oh, and did I mention that he's gained about 60 pounds due to his inactivity?

When I read all the things that similar paras, and even quads, accomplish, I am angered by his lack of desire to be more independent. I've told him about all the cool information on this site but he has no interest. He has turned down all offers of help (other friends, SCI mentor programs, support groups, etc.). For months I have been telling him, and anyone else who will listen, that I just can't keep doing this. I'm tired, I'm pissed, and I'm feeling a bit abused.

I think I hit the wall last night. One of his relatives is moving into a new house and wants him to come live with her. I told him and everyone else that I thought that was the best thing; he is not making any progress here and he needs to be back in his hometown where there is more support. I thought he had agreed to the move. But last night I was pressing him for answers - how are you making the move? Do we need to pack anything? When are you going? And he just shrugged and said "Well I don't need to worry about that - it's not going to happen any time soon." I told him that I'm just worn out - I just can't be responsible for him anymore. He just ignored me, the way he always does.

He's been having AD-like symptoms for the past few days - sudden headaches and crazy high blood pressure - and I'm sure he has another UTI. But he doesn't care about his health, he just says "let it kill me." I have pointed out that unfortunately it WON'T kill him, he'll just have a stroke and end up a vegetable. He never took care of himself before his injury, and he's continuing with that practice now.

I know he's probably depressed, but unless he seeks treatment there's nothing I can do. Obviously he hasn't accepted his injury so he can move on. He just refuses to make decisions, or take an active role in his health. And I think at this point I'm just enabling him to continue this behavior. As long as I keep showing up to feed him, why should he care?

I honestly thought I was stronger than this. I'm not particularly nuturing, so the idea of being in this weird co-dependent relationship has me really befuddled. Also I'm not a kid - I'm almost 50 and have long prided myself on being quite self-sufficient.

So what do I do about this? Do I just say "I'm sorry, I've been telling you for months that I can't do this forever and no one is listening. Here's my resignation." Do I call his family and tell them he's having AD symptoms and it's too dangerous for him to live alone anymore? Do I call his caseworker? Or do I continue to care for him and hope that he somehow snaps out of it?

I have done the best I could. Really I have. But do I have to do it forever?

All of the above would be my advice.

No. You know it isn't going to happen.

Certainly not. You are making your own life a misery. You tried. You did your best, but without an element of self-help, he is never going to improve. Start living for yourself.

Thank you, greybeard. I don't like it when I become overly emotional...I lose my perspective and can't make good decisions.

I think you've earned the right!
Have one of these -

My sincere thoughts are with you..not with tom, since it seems he has given up on everything. You have done all you can do...if tom doesn't want to help himself, there's nothing more you can do. HE has to get OFF the "Feel sorry for me wagon" and do something for his self. Nothing is ever going to get better until he realize that HE is a key factor in things getting better. If he wants to sit around (even knowing that he should'nt be, because of sores) then HE has made his choice. Let him be responsible for his on action. You have done your best. He needs to quit feeling sorry for his self and do the very best with what he has. Don't be his life caregiver. You live your life and let tom live his....no matter how it turns out. You did your best to help this guy.

[quote name='hooplady' date='Jul 25 2009, 11:24 AM' post='120910'

I have done the best I could. Really I have. But do I have to do it forever?

[/quote]

That's up to you.

E-dog

I probably will get jumped on for this but it is way past time to think of you. You have done everthing that you can and it is up to him and he had given up 15 months ago. You cant drag him to a shrink and force him to deal with the situation. Yes I may be hard but the fact of life is that some people are quiters and that is that.

Where do I get off......I still have streatches of days that are horrible. You see not only am I a C6-C7 incomplete but I have a whole slew of neurological issues from solvent exposure when I worked in a lab. Today for example......I got up and ran to the bathroom because I had diarea and while I was sitting there vertigo kicked it so that once I was done I had to crawl from the bathroom. At least I have not had the dry heaves yet today but is still early.

Havent been able to get much done all day either too dizzy or stuck in the bathroom.

Wow Hooplady,
Your life has had bit of an ironic twist lately, hasn't it? ( I read your profile)

First, get him a home health care nurse to help take care of his pressure sore.
Next, through that agengy, he should be alotted with home physical and occupational therapy.

Lastly, set it up at his relatives house. Your asking him when he's planning on moving just isn't getting through to him. Try TELLING him when the move day is, then get some boxes and pack them up.

What does he think will happen to him if you don't turn up tomorrow morning?

Try it and see.

Shock him.

Or does he take you so much for granted that he doesn't even notice you anymore?

You have done so much for him already but unless you want to be his wet nurse until you break mentally / physically than you've got to decide you can /get/ him to remove his head from his arse and realise that he can either go to that nursing home and live the life of a rotten vegetable or he can stand a chance of living some kind of life and hell even enjoying himself.

Or if you are more important.

Because I think you owe him nothing.

I agree with Qbounce - pack his stuff - arrange the move... don't leave it up to him.

Thank you all for your honest replies. I just needed to know that I wasn't losing my mind.

I called his sister last night and let her know the scoop - she was pretty shocked that he was saying he wasn't moving, since the whole reason for the new house was to accomodate him (I didn't know that). I was afraid his family would think I'm abandoning him; I couldn't have been more wrong, she did nothing but thank me for everything I've done. I called another friend who is local so she knows what's going on. She is more than happy to help him start packing, whether he agrees or not. Trust me, as soon as someone takes the TV away we'll see if he truly can't get out of bed!

Today I went by and made sure he had enough food and caths; he will have a homecare visit tomorrow. I told him that I'm finished; he needs to figure out what to do from here on. Qbounce, I didn't make it clear that his original pressure sore did finallly heal about 6 months ago, but of course he's always at risk for new ones. He's on Medicaid and does not qualify for any type of homecare. At T2 he's "supposed" to be able to care for himself. He's paying for an aide twice weekly out of his pocket; that money won't last long. I previously paid for an occupational therapist to visit him at home a few months ago. She gave him exercises; he doesn't do them.

Hartcreek, you weren't hard on me at all. You're yet another example of someone whose injuries are far worse than his but you are still living your life.

Clara, I already know what happens if I don't show up for a couple of days, because I have been sick and/or out of town occasionally. He will call someone else to bring him food and sit in his own poo until I finally come 'round to clean up.

I am so grateful for this forum; just writing it all out has helped me think more clearly. I went back and read it all and pretended that someone else wrote it - I would give me the same advice that you have.

By now it is pretty obvious that you need to get him back to his relatives. They have known him longer and there are more of them. They will be able to motivate him more readily than you can. In fact,, it may take the move to wake him up.

I'll give you a few ideas toward that goal,,,

First,, get out the lease for the apartment,, make sure that you won't have any problems breaking it for medical reasons,,,, the reason is his disability and the fact that you won't be caring for him any more.... Period. Talk to the landlord and set a date for giving up the place,, usually at the end of a month, but maybe sooner.

Have the television service terminated,,, immediately,,, the same for the internet provider,,, not at the end of the month,,, NOW.

Start serving him meals only at the kitchen table,,, if he refuses to move,, he must not be hungry enough.

Start packing the basics he will need to take with him,,,, Tell him you will send the rest later.

Call the airport and find out what accomadations they have for complete Quadraplegics,,,, he's is acting like one so you may as well warn them . Let them know that he will be flying UNACCOMPANIED, and will be met by his new caregivers. Then, buy the ticket.

OR, if necessary, have one of his relatives come up to get him.

It won't be as hard, once you get the ball rolling,,,, but it will still be pretty hard. Just keep in mind that this is as much for him as for you. Even if he starts to improve his habits,, it's only until you tell him he can stay,, then it will be buisness as usual. A change of scenery is his only real chance, at this point.

He won't get better with you,,, he'll only change when you aren't around. This is for him even more than you. If you care about him, you have to do this.

I wish you luck,,,stay strong,,
ed

Thank you, edlee. Yes, I care enough for him to be tough; at the same time I am looking out for my own well-being. He and I had already had this conversation months ago and I thought we agreed that this was the best solution for all concerned. We already cried over it; that's why I was so shocked when he started waffling.

Unfortunately in my quest to make him less dependent on me, the lease and utilities are now fully in his own name. But I know that the landlord will bend over backwards to help him; anyways it expires in a month or two. Maybe I can figure out which wire goes to his apartment and there might be a hedge-clipping incident.

Once before I did threaten that I would no longer bring him meals in bed; that merely degenerated into a power struggle and was actually harder on me because now I had to Hoyer him in and out of his wheelchair. But I think once I calm down I can muster enough will to win that battle now.

Long ago I refused to buy him cigarettes or junk food; he has his homecare aide do the shopping now.

I do like the idea of packing up his stuff. It's not like he can jump out of bed and stop me - and if he does, problem solved!

I will also find out what options are available for flying. His friend who lives in town is willing to pack his stuff and drive him there, but since he can't transfer we didn't know how to sling him in the car. I will also look into the kidnapping statutes just in case we need that info in the near future.

I agree, pack him on his way.

One other thing though with regard to para's and quads. Some people like to sit around on their backsides. If he was one of those people before, why shouldn't he be now? I know he should be taking more care of himself now but sometimes I feel there is this pressure to be superhuman once injured. Perhaps some weekends I may just want to lie in bed or sit on my ass in front of the TV in my birthday suit eating pizza and sculling coke while belching and (can't think of anything worse actually, but I digress) and inspecting things I find in my belly button. Perhaps I did those things regularly pre injury, actually I didn't, but it is my option if I so wish to.

He does sound depressed so some help with that would be a good idea too. Just getting out in the sunshine and doing stuff does a lot for me, that is for sure. Not sure if coming out of my Winter depression helps first leading me to getting out more, or getting out more helps me get out of my depression but whatever it is it seems to all be tied together.

Good luck and if he gets off it, don't kick his ass too hard. He may not feel it but it won't be the best for his pressure sore.

Slowlegs has a point - make sure you kick him somewhere where he can feel it.

There is nothing wrong with being a slob (says she sat here with two blankets a laptop and a huge bottle of coke - all it well on this sofa) - but when your habits extend to not feeling any urge to get out of bed to wipe the cac from your crack it's a step too far.

Good luck with it all. Remember we're here should you need to yell scream and pass the vodka around.

I believe that everyone should choose how they want to live their lives - each person is fully empowered to succeed or fail. If he wants to sit on his butt all day that's fine; he just needs to structure his life so he can do that. He just needs a room and a TV; some other disabled person would love to have the apartment he's in right now. What he cannot do is stay where he is, ignore his health, and still expect me to take care of things for him.

I don't want him to go out and train for a marathon; I just wish he could get out of bed and get down to the pub every now and then. Or perhaps learn what's in his refrigerator.

Oh, and there's this little place on the back of his arm that I can pinch to get his attention...

Maybe you need to tell him how it is for you...

My ex went through that... he would pout. cuss... yell.

I felt I had to put up with and did... your situations is different!

even tho it seams to me that he wants to like run away and die.

He is not your responsibility! You don't have to put up with it!

You need to call his family. make sure they know you want a life. and they have a week. or what ever. and your calling social services.

what a sad situation. and it don't have to be.

but I know what your living...

Hello everyone,
Just thought I'd post an update. So much has happened since that low point last week!

I followed through on my pledge not to help him, and sure enough, he began to help himself. He was pi$$ed at me for several days but what matters is that he took action. He got on the phone every day and got things moving - an appointment with his doc for the UTI, monitoring his blood pressure, and (this is the biggest one) finally got his insurance to approve more therapy. And his new wheelchair was delivered (he had been using one that didn't fit him - I found it on craigslist).

Tomorrow he goes back for two weeks of additional rehab, for the training that he never got the first time. He is sooo out of shape, he is going to be one hurtin' puppy! But he will finally learn to transfer, dress himself, and actually use his wheelchair properly. He's also talking about when he will move in with his sister.

Now, the caveat is, how long will he be able to continue with this behavior. Rehab will be tough and he will experience setbacks; besides he has to come back to the real world where his motivation has to come from within. I have seen him try this before and he can manage a sprint - but as you all know, this is a marathon. I know that I have to remain committed to forcing him to take responsibility for his own care.

And then there's my reaction. For several days I did not know what to do with myself; I suddenly realized that I have so much invested in my identity as his caregiver that I was experiencing withdrawal. I have to re-establish my own life now and remember who the heck I was before this happened.

I just wanted to thank everyone again for their advice and support. I couldn't have gotten what I needed anywhere else, and me doing what I needed to do has helped push Tom in the right direction.

Great to hear things are going better - hopefully this time they will stick

Don't feel bad about the way your feeling. Learning how to live life in a chair is just like learning how to do anything else. If you have somebody do it for you all the time you will never learn. He needs to realize that he can't have somebody do everything for him. It sounds like you have tried everything to help him. You can't spend your whole life giving so much and not getting anything in return.

I figured I would post an update. This is his third week in rehab and the change is amazing. He is working hard every day, upbeat, and asking for extra PT sessions. Like before he's had a number of setbacks (low bp, shoulder troubles, reactions to meds, etc.) but his attitude is completely different. Everyone is commenting on it, and they ask me "What did you say to him???" I just reply "Um, I basically told him he was on his own until he got his sh*t together!"

And this time around I'm not constantly hovering by his bedside. I go visit him most days since it's on my way home from work, but not every day. Now we go for a walk or go get something to eat together; this weekend he wants me to come play Wii and next week he has us signed up for a support group. The dynamic is completely different; he's holding his own. He's more sociable and has more to tell me about what he did that day and who he interacted with. He's also more relaxed and..dare I say it...accepting of his situation.

I'm just keeping my fingers crossed that he continues to improve once he comes home and he has to motivate himself. Wish us luck!

You did a great job there. You got my good wishes!

Just been reading through this thread (advantage of coming in late is you get more of the story in one hit!) and gotta say it's a great ad for Tough Love. Well done Hooplady!