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Caring for mentally retarded brother

15 years ago

I just found this forum and am hoping there may be someone out there with a similar experience. My parents died in 2008 within 5 months of each other. They had been caring for my mentally retarded brother all his life (he is 54 now) and he has now come to live with me. It has been a real eye-opening experience!

Unfortunately they had never gotten him signed up for any services that he would be eligible for. It took me a year and a half to finally get him declared eligible for sevices but now he is on a waiting list (which may take years to get any services. I have been pulling my hair out in frustration!!

I have another brother but he lives in another state and has 3 children and says he cannot help out more than a couple of times a year for 2 week visits.

I feel like I am being punished for doing the right thing by providing a home for my brother. He can take care of the basic activities of daily living but needs someone to prepare meals, clean, manage medications, and basically provide a safe environment. He has problems with repetitive actions (like turning the lights on and off 20 times), being possesive towards me, and other frustrating activities.

Anyone out there with a similar situation?

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Comments (5)

dedtired
15 years ago
You need to look into a group home for him. It will be better for him and for you. There are some wonderful ones out there, but choose with care. Good luck to you. I've had friends in the same position you are in now. Placing their sibling in a group home has worked out wonderfully for all.
asolo
15 years ago
Must agree with dedtired. You can't handle this indefinitely. Unreasonable for anyone -- including yourself -- to expect it of you. Your life is important, too.
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I am so sorry for your loss. You loved and cared for your brother the best you could, with the resources, knowledge, and understanding that you had. Please don't be so hard on yourself. My mom passed in March, and I think that she now has a complete understanding of what the purpose of life on earth is--something that remains cloudy to those of us left behind. Your brother sees completely what we only see partially, so be encouraged that he knows the fullness of your efforts and your desire to serve him. Good luck to you.
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Be firm. Mean what you say and say what you mean. Go to bed knowing that you're doing all that you can do and that you can't solve this problem as a lot of it is completely out of your hands. The "system" can only step after things get dire and even then there are limits to what can be done. I could have written your story only it would be about my brother who refuses to get help or allow anyone to help him. Know that there are plenty of people out there faced with the same crisis as you are. Some stories end up with happy endings and some don't.
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Hi kath, I'm sorry that your Dad has this heartache to deal with, but without his brother recognizing him, it's been a problem for a time and this will put an end to that ongoing heartache. I hope that you can call and talk frequently for the next while - does he have skype or an equivalent? It would likely be helpful if he could see your face, especially moving. Sorry as well that your family has had these disruptions: it's best to get such issues resolved: life is too short for us to let ourselves become prisoners of such issues to the point that it causes a rupture in our relations with out family - our supposed-to-be loved ones. (((((kathsgrdn and bereft family))))) ole joyful
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pattatee
Original Author
15 years ago
I agree but in Florida there is a waiting list which can take as long as 2 years to get him into a group home. It is difficult to manage in that interim.
mariend
15 years ago
He may not be elegible for a group home, but may need a different type of care home. Contact the social services of your hospital, his doctor, your mental health association etc. Just call/talk to everyone, but document your enquries. If he has no funds, contact your state health care or help. You cannot continue as he could turn dangerous.
pgislave
12 years ago
I am in a situation close to this- my brother is Mr & mi. My father has Alzheimer's. Dad is on hospice.. My brother is 57 & has never stayed by himself. He is 6 $ 250 lbs. He has a terrible temper.

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