My dad is still recovering from his open heart surgery. In the mean time I was taking care of my mentally disabled sister. She is a good girl, eight years older than me, and is helpful around the house. She was with us almost two weeks and it was kind of stressful because it is like having another little kid around the house. My parents have decided to have her live with us, when they are no longer capable of taking care of her.
Based on the two weeks, it was hard for my hubby and I to take care of her, though. My hubby thinks that my mental health was affected by her staying with us for two weeks let alone for the rest of our lives. I have two other siblings, but one lives out of country and my other sister does not have a good relationship with my parents, so I cannot rely on my other family members to take her. She is autistic and has bi-polar so she does require care and cannot live on her own.
My parents have made the decision of her staying with us for the rest of her life. I feel like it is asking a lot from my hubby and I. Or am I just being selfish? I have been under a lot of stress about my dad, and all the drama going on. I want my disabled sister to be safe, but I don’t I can manage to take her for the rest of our lives.
I don’t think it’s fair for your parents to tell you what you are going to do.
You might want to tell your parents to get her on the waitlist for a good group home or assisted living facility. It’s good to want to care for her, but it’s also important to recognize what you’re physically capable of. The waitlists are quite long, so it’s better to get on it now than to wait until she’s already in your care.
She’s an adult. She would probably enjoy a chance to live more independently than just with you or your parents. Lots of parents have a tendency to infantilize their autistic children, but most autistic people I’ve met want typical experiences as much as any other person. Moving out and living in your own place with roommates is a typical experience and part of growing up. Can she talk or communicate? Can you ask her what she wants in life?
Her mental age is about a 6 year old. She is unable to live on her own. She would need to go to assisted living if we decide not to take her. My hubby is good with that. It’s just I’m feeling guilty because I wouldn’t be doing what my parents wish. She has a very difficult time expressing her feelings. I can’t have adult talks with her, because she does think like a severly autistic child. She is also mentally handicapped with brain damage.
Can you talk to your parents and tell them how hard it’s been for you? And suggest that she be put on a list for a good care home?
I don’t know how is your and your husband potential and power for caring her but if you do it then I’m sure that God will be happy of you both,
You can put her in a caring center and bring her to your home some days in a month but if you can protect and care for her in your house all the time then do it,
Yah, we’ve discussed. My parents are very insistent that she not be sent to a facility and be with family. Unfortunately the only family member at this point that can keep her is me.
Wait! Are you living with your parents? If so, and they are taking care of you and your husband it doesn’t seem right for you to be taken care of and she can’t be. If it’s your parents house it’s their choice.
Now if the decision was made for you and your husband to take care of her at your own house then you have every right not to want that.
No we don’t live with my parents. We live about an hour away and have our own family we are raising. When are kids are grown up they can leave the house. However with her living with us, she will always be a ‘kid’ and will never leave.
Then your parents don’t have the right to burden (I know it sounds cruel) you with that and tell you what you have to do. You have your own health, your husband and kids to think about. I would say this about anyone even myself. I live with my parents, but if I became too much for them and I was making their life difficult and not enjoyable I would want them to Live a healthy life and make me get my own place. I wouldn’t want to be a burden on them that’s not fair and I couldn’t live with that guilt!
But in her situation I agree with the others about finding her a facility that allows you to take her on occasion. Maybe two weekends a month!
Yeah it’s put me in a difficult position because my hubby is against her living with us for many reasons that make sense but my parents want the opposite. And if it’s my parents dying wish I don’t want to refuse them.
What I mean is, a group home or assisted living facility would be a huge step in independence for her. It would be her version of living on her own. Remember, just because she acts like a six year old doesn’t mean she has a six year old’s hopes and dreams.
In the past they put her in a group homes. They all went badly. Apparently traumatic thing happened to her while at these places. I don’t know because I was younger by eight years.
Yeah, it can be hard to find a good one. That’s why you need to start looking now. I used to work at an amazing place, but they only accept PA residents into their adult program. I’m sure there’s one in your area also.
I have a daughter thats the same way. We were told of homes that are family style. What you need to do is get in touch with organizations in your state for people with developmental delays and the mentally handicapped. I’m too biased to advise you in this because of my child. She’s the same way. If mine had no other place to go and none of her siblings took her in I’d be devestated. The thing is she has no idea about anything except these people are her life. I mean, I’m sza and take care of someone excatly the same way. And maintain my other kids and marriage. I guess it all boils down to how important she is to you. Sorry if that sounds harsh but look at it through her eyes. Being put in a place she can’t live, being handed around…thinking she is home only to have that change in a second. It is scary for them. They can’t adapt. You have the option of meds and therapy, she cannot be “fixed” or express her feelings to a therapist in a way like us in order to work on getting better. There is no better. If you just won’t take care of her, spend time looking for family style group homes. State organizations have info. If you need help finding resources let me know and i will ask my daughter’s care coordinator to find info for your state and town.
You are making me feel guilty that I can’t handle my sister living with me. My health is important to me, and maybe you can do it, but I don’t think I can. That’s a huge commitment for my family. She is very important to me. You are implying that I don’t think she is.
I’m not implying. I’m being explicit in saying you have to decide how important she is. She cannot care for herself. She relies on family. You have to step up and find a good home or care for her yourself.
To be honest if you’re going to put your autistic, mentally challenged sister out then I don’t think we can be friends any more. My heart is breaking for her. She has no idea. I just want to cry…
Take care. I can’t d o this and you know why.
Is it fair that your guilted into caring for your sister until you are no longer able to do a good job?
At what point do you have to prove you can no longer care for her just to please your parents?
Is it fair to your sister either?
Your parents need to hear what your saying and decide what’s best for everyone, including you.
I have not said that we would throw her out and to think we would do that is very insulting. Please close this thread. I was looking for advise not asking to be insulted. @anon9798425 @ninjastar