Hi All!
I moved my brother out here in April-from Texas to California-to help him lead a better life. In Texas he was often in bed, alone. He lived far from my parents (his choice) and spent most holidays alone, and his friends weren't willing to take him places with them, etc. His apartment was a sty and he seemed depressed.
He lives independently, but has a morning and evening aide that come to get him ready for the day and put him to bed. They are paid through Medi-Cal and are approved for 9 hours a day-total. One works during the week and the other weekends.
In an effort to improve his independence he had a neurogenic bowel procedure performed which was supposed to eliminate the standard bowel program and create a 'flushing' method. In addition, he had a bladder procedure done that allow him to drain his bladder via catheter every few hours. Both of these surgeries seemed wonderful, but failed miserably.
Since moving out here he has had bowel accidents randomly, day or night, sometimes several times a day or several times a night. For the first 3 months he was here I was getting up at 3am almost every night to go over and clean him up and/or help him cath. In addition to the 'accident' calls, he has me come over to pick up the phone he dropped, take him to/from doctors appointments, bring him lunch, pick up/drop off paperwork for him, fix a flat on his chair, do minor maintenance around his apartment, etc. In addition to running a start up business from home, I am in school full time and at the time I was planning my wedding so the strain of having to wake up every night was becoming overwhelming.
My parents came out a week before my wedding to help and told him that he needed to call on his attendants more and me less, which he did for a time, as far as his accidents were concerned. I actually think he was having less accidents for awhile.
We are at the point now where he's not having too many accidents, but he still needs me about once a day to come over and help him with something or other. Which wouldn't be a problem except for his attitude. He tells me I am 'on-call' and gets furious with me if I'm busy and can't answer his calls (at the gym, in school, in the bathroom, etc.). He will call me over and over and over, as if it's an emergency, only to ask me to come over to do a simple task. He will demand I do things on his timeline, no my own, and if I argue "can't I do that tomorrow?' he will yell and bully me until I feel like shit and just do it to get him to stop.
He's always been like this-since we were kids. He always bullied my mother and I to get his way, but now that he is injured it's harder to put my foot down and stand up for myself. When I try to stand up for myself and say "I will be there if you have an emergency, but if its not an emergency I will be there as soon as possible. treat me with respect and kindness", he calls me names and makes fun of me.
Its especially hard because he vacillates from being sweet and appreciative and pleasant to being rude, inconsiderate and angry. I love him with all of my heart and I do enjoy helping him as much as possible (aside from cleaning up accidents-that is hard for me), but all of our time together is spent bickering and I am growing to resent him.
I don't know what to do. Some days he is very independent and gets up and takes care of his life-other days he is completely dependent. He won't bathe, aside from bed baths which don't work very well, his house is still filthy, his paperwork is never organized, he never remembers his appointments and depends on me to remember them and keep track of doctor's numbers, etc. He refuses to participate in therapy or 'move forward' in his life. He says he wants to, but then 'something' always happens that gives him a reason to stay in bed for days and we start over from scratch.
I have a husband, a job, school and my own life! I love him but I can't run two households. He could pay out of pocket for more attendant care, but he thinks he shouldn't have to-that Medi-Cal should. How is that MY problem?
I guess my question is:
How do I get him to understand that I am not his employee and that he can not treat me as such? How do I get him to realize I am not sitting on the couch eating bon bons all day and that I can't drop everything every time he calls? I don't know how spouses do it. When he and I are together I do everything for him: start his van, get him strapped in, light his cigarettes, get out his caths, feed him and give him his drinks, straighten his shirts and pants becasue they have to be 'just so', etc. I feel like I am whining, but there is no point where we can just 'chill' and hang out...it's always work. And unlike most caregivers on this site, it's not getting easier. Sometimes I am in a better mood and it's not bad, but sometimes I am tired and I get frustrated. He always needs something.

He needs a slap around the face, and unfortunately I do not know anyone in the area to assist so it's up to you.

Turn your phone off and let him stew for a while, seriously if he's independent all you're doing is giving him a "chance to work things out for himself" or of course call the people that are meant to be looking after him.

Tell him that you will only be available between 7 - 8 and not on Tuesdays, or whatever suits you. You're the boss here NOT him. I know it's hard and it will be messy while he has a tantrum like a three year old but if you don't sort it out it will always be like this. If he needs DIY doing find him a local handy man and send him in - why should you do it for free?

If you are doing something - do it your way. If he doesn't like it tell him he'll just have to do it himself. The injury wasn't your fault so you shouldn't have to suffer from it. If he can't light his own cigarettes... well he'll just have to stop smoking.

Can you and your partner go off on holiday for the week? Aside from having a relaxing time yourself it gives you the chance to escape it all it leaves him in no choice but to do something himself.

If he wont bath than he'll just have to stink, if he's rude to you than you leave the house and whatever you were doing. Do not return even if he's flat out on the floor trapped until you decide you want too. You're the one in control. Get him a cleaner with his money to do the cleaning and as much external help as you can.

Hope this helps x

You cant help those who won't help themselves.....

Wow! You are TOUGH LOVE, huh? LOL. I wonder what he would do if the next time he was rude to me, I just walked out? OMG. I really appreciate your support-as I spend most of the time pointing the finger at myself and it's driving my husband crazy. Right now we aren't speaking because I stood up for myself. Then I had the foolish idea to make a slide show comprehensive guide with all kinds of adaptive aide, activism and advocacy, grants and funding, clothing, and health care resources for him. I wasn't trying to upset him, I just thought it would be helpful? He hit the roof and said some pretty mean things. So. I guess he'll have to figure it out on his own until he decides to treat me with respect...Thank you. Your response really helped and made me laugh Its one thing to hear it from my husband, and another to hear it from someone unbiased.


It's true. I tell myself that all of the time-I wish he understood it.

Cant really add much to what Clara said, she summed it up pretty well. You have to stop enabling your brother from behaving like this. He sounds pretty angry but thats no reason to take it out on you. Remove yourself a bit, be unavailable, shut your phone off, say NO etc etc. Your life is just as important and now he has to learn that as well. It should NOT be all about him.
Dont ever feel guilty for saying no, he's grown up, can make his own choices its up to him if he does it all the hard way or the easy way.
Main thing is to look after yourself.

doesn't sound very independent to me ??