They have both live with my husband and myself for 3 1/2 yrs now. It’s gotten so much harder lately. I don’t want to be selfish but I’m getting that way. They both do not like strangers and family is thin. They both worry about each other and can’t live without each other. A nursing home would literally kill them. I have no idea what will happen when we just can’t do it anymore. Any suggestions?
This talk of them not being able to live without each other is ridiculous. Your mother is 92 years old so it's pretty likely your brother is going to have to live without her. In what way is your brother handicapped? Is he intellectually disabled (formerly known as retarded)? Or is is mentally disabled by mental and/or psychiatric illness? There are different types of group homes where your brother could live with other people like himself. He'd be living supervised and would not be alone. Group homes in my state are pretty nice. They are like family homes. Everyone has chores, everyone helps with cooking, cleaning, etc... They even do holidays together, have movie and game nights. My friend's son is a supervisor at one for people with intellectual disabilities. It's a really nice place.
It would probably be a good idea to start transitioning your brother to life away from your mother so it will be less of a shock to him when she dies. Your mother should be put into AL. If she can still get around and only needs some assistance with reminders and things like that, AL would probably be a good fit for her.
If your brother has a social worker, talk to that person. They can help you get him placed somewhere that will be good for him.
Unless you have a crystal ball, you cannot know a nursing home would kill them. A nursing home would provide more than you and husband can do for them, and they would still be together. They could eat together, watch TV together, hibernate in their rooms together, have recreation together, and generally do what they do at your house. The difference is that you and husband would not be working yourselves into a nervous breakdown to care for them, you'd be free (at last) as you deserve to be. You can visit whenever you want. In fact, they might welcome independence from you. How can they like being a burden? Don't you think they must feel your resentment?
Mom should have made a plan for her old age that included care for her handicapped son. Or maybe she did, and the plan was you. If you were the only plan, shame on mom! I actually had a relative who took care of her mentally handicapped son until she was 97. She died at 99. He had been able to work at a minimal job until age 70, and she'd frugally put his money aside all his working life so he could have care in his old age if she wasn't there. He's been living in a group home for years, loving it and enjoying life. Everybody who said he'd never get over the loss of his mom was wrong. He doesn't even remember his mom! And he is fine.
Your brother will be fine too. Find them both a place to go now, and plan for where brother will go once mom has passed. And repeat after me: NURSING HOMES DON'T KILL PEOPLE. They keep people alive. That's their job.
PS You all might thrive on anti-anxiety meds. Ask your doctor about it.
Many say that, then find it is the best solution. Visit a lot of care homes and start looking into how they will afford it (Medicare/Medicaid). Don't use your own money for it. When you can't do it anymore, you find skilled help to do that. Memory Care and Skilled Nursing are two examples of places with skilled staff that can do a good job with your loved ones.
I have a physically disabled nephew who lives on his own. I oversee his money. The State helps him with his rent and he has an agency coordinator. Also an aide once a week to help him run errands. When I am no longer able to oversee him, the State will take over. He gets Social Security Disability, Medicare and Medicaid. Recently received food stamps.
Is brother mentally handicapped? I would call your County Disabilities Dept and ask them what options you have with brother. Even if they remain in your home until Mom passes, I don't think you want him living with you the rest of your lives. And if he has a mental disability, he is more prone to Dementia. That mixed with other problems like downs syndrome and autism can really be more than a caregiver can handle.
Are you paying all your brother's living expenses? Or does your Mom have enough funds to cover for the both of them.
What kills is feeling you are responsible for the happiness and well being of your family. You are neither qualified nor able to do the care needed here now. If you cannot recognize that it may kill you well before they meet their own demise. I am sorry, but the phrase used here on AC by a member reverberates in my ears all the time: and that is "That at some point it is either you or them".
Sorry, that's the truth.
Of you choose to sacrifice yourself on the altar of Sainthood that's great. Just recognize that A) it is your CHOICE, and most of us think it is a poor choice and B) No one, including those your sacrifice for will thank you and C) you are not qualified to take this on.
I suggest you seek the help of a really good in person therapist who is familiar with life transition choices.
We here have been there and have done this. Read, and realize.
I wish you the best, but you didn't cause this and you can't fix this, and if you CHOOSE to sacrifice you entire life to it, no one will care whatsoever.
Same goes with mom, by the way.
My in laws have cried and mewled for five years about gas they’ll just die if they don’t get what they want. You ever see a toddler hold his breath? I assure you, they don’t just die.
When our parents turned 90 and showed signs of dementia, we couldn't consider assisted living for them because my mom refused, in part, I believe, because she knew my brother would not have been able to live with her.
And my parents made no plans for my brother, for his future. Another brother is his POA. But that's it. No other preparations were made in advance. It is all up to the POA. (And he's still not sure what he will do!)
My mom and my brother used to sit at the table together and entertain each other, for years. But that stage in their lives has come to an end. My dad passed in September and my mom is mostly bed bound now (with caregivers). I did wonder how it would affect such a lengthy dynamic they had sustained year after year.
But---here's what happened. My mom no longer worries about him. Her dementia prevents her from any concern over him now. She is mostly in her own world, and frankly I am happy that she has been released from decades of non-stop worry and pain about her son. She is free and living blissfully.
My brother's reaction to this change was not as dramatic as I had expected. Just before becoming bed bound, my mom would spend hours in her recliner, sleeping, instead of joining him at the table. He would try to engage with her, but she just looked at him. She would watch tv and he would try to talk with her about what was on. She didn't respond to him. So he would simply leave the room.
So, if I can offer you a small kind of hope, though mine may be a very different situation than yours, it just kind of happened. The change took place. My brother adjusted. My mom is finally feeling relaxed and worry free.
I hope whatever happens in your family is peaceful and does not cause you any distress.