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Caring for disabled brother


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I'm 45 my mildly mentally disabled brother is 47. Our mother and step dad are recently deceased. He's been living with them since we were kids and has never ever lived on his own. He drives, works a minimum wage job but everything else has been done for him. Watching his bank account, taking his car in when it needs service, cooking, making sure his insurance is paid. Taking up issues with his boss at work. He's never even had a bill in his name so no credit to his name. He is also an alcoholic and has no friends of his own. I won't go into the vast array of details that go into suddenly having my brother as a permanent and full time part of mine and my husband's lives. It goes without mention that we both love him but the pressure of wondering what's going to happen to him as he ages and the financial impact on us, not to mention the mental and emotional impact it's made is difficult to describe. We are not wealthy and work our butts off. Maybe it's an adjustment and I'm just not there yet. My mother never had him formally diagnosed past grade school and the paperwork on that assessment are long purged. So how to apply for any social services assistance...? I have worked hard all my life and earned every second of peace I have. My brother has been taken care of by our mother but of course he has. How else could he survive? I understand but she has taught him so very little. I've seen other more mentally handicapped people better prepared. So far I have had to teach him so many standard things like how to make dentist appointments for himself with a dentist he's known for 15 years. Or how to buy groceries on a budget. These are among a multitude of things he's been able to pick up rather well over time so why for 47 years didn't our mother or step dad help with this long ago? Why am I my big brother's "new mom"? I still work hard, have my own set of stresses, health issues and worries. Ugly as it sounds, possibly there's some jealously over our mother's love trying to punch through, though I'm trying to keep it down. We spend a great deal of time with my brother, he is a part of our lives. We love him. I am working hard not to let the resentment seep through because it will hurt him if he feels it. My mother must have loved me too but could not, for her own reasons, show it to me the way she was able to with my brother. I'm struggling here with several things: emotions, stress over the unknown future and resentment. No one else in my family, not even our father who is in contact with us, has been willing to offer time or support to my brother, just a lot of lip service. Help. This is hard to shake and it's making me miserable. I used to be happy. Need to find a way to accept and hopefully that will lead me back to happiness.

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I have a schizophrenic uncle who has passed through mostly of what you described here. the difference is he was diagnosed early on, around 19 - at that age he worked, and his insurance covered a minimum wage benefit for life, so after his big crisis at 20 he retired. my mother was the one left with the responsibility of taking care of him after grandma was gone, and it was not easy when he moved in, I know what you are going through.

 

he was even more passive about his own life than your brother, my grandma spoiled him to the point he could not do anything unsupervised. ultimately mom put him on a nursing home. it takes about half her income, besides his own salary so I end up helping with her home expenses every now and then, but it has been worth it. he was with us for some 2-3 years.

 

he and mom have 3 other brothers and sisters, countless relatives, and no one besides us pays him a visit, not even on christmas. lip service is still a lot, when he moved in our friends fled, it was awkward. he is not aggressive or anything, just a bit catatonic most of the day.

 

I know you are going through a lot, loosing your mother and all the conflicting emotions. rest assured your mother loved you just as much, or maybe more - she just didn't have enough space in her life to show it to you, because your brother demanded much more attention. you could try to get your brother reevaluated, even now, maybe it's not too late for that....

 

either way, just don't get guilt tripped, you have the right to feel all those emotions, you are not being a bad person. but you also need to work around them so you can see if it's possible to adjust and keep living with him, maybe just helping him to grow more independent, or what would be the available options. running around your own tail will not take you where you want to be. put it down on paper, make some research. what can you do?

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I very much doubt that your mother spent her whole life catering to your brother and doing everything for him because she loves him more. More realistically, it was a matter for poor/no understanding of what kind of care or training he needs, etc. It's like once he was diagnosed, she just did what she thought she is supposed to do for him and never sought to understand or know more. It's possible that she also got some bad advice at one point and did not think to get other opinions. Basically, her mentally disabled son, her burden and that's that. Unfortunately, now she is passed away and he is on his own but for you.

 

So maybe focus on the positives like the fact that he does work, which offsets at least some financial burdens. You are able to teach him some necessary things and he is open to, willing, and able to learn. That's a huge positive and the best part is that learning to be more independent is never ever too late. The other positive is that no, you are not your mother. You can seek out assistance, learn more about his condition, get educated how to handle it better. Of course, first you need to get him formally diagnosed. If your funds can't cover it, save up his paychecks. You can also call around different clinics and doctors and see if anyone will do it free. A lot of doctors dedicate at least some portion of their practice to that, so don't be shy about asking about it. The sooner you get informed and learn what assistance you can get and how, the better you'll be off.

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