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  • Taking care of an adult with Down syndrome

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    Old 09-25-2018, 09:47 AM   #1
    Join Date: Sep 2018
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    Jessicaox HB User
    Taking care of an adult with Down syndrome

    I honestly need to talk to someone, Or some advive. My boyfriend and I took in his 28 year old sister who has down syndrome.
    It's taking a toll on me, I am already a mother to 3 boys. My sister in law cannot cook bath, wash or do any of that she wont even eat unless i physically put food in front of her, she says she forgets to eat. She was in her mothers care up until she was removed by the police. She was serverly neglected i mean severely. I am scared that it will never get easier, I am on maternity leave for 4 more months and i dont know if i can do this, i feel bad for saying it but it is extremely exhausting. Im only 25 and this weight is breaking me. I can't talk to my boyfriend about this because he right away says that I have something against her or that i hate her.

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    Old 09-25-2018, 10:05 AM   #2
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    yayagirl HB Useryayagirl HB Useryayagirl HB Useryayagirl HB Useryayagirl HB Useryayagirl HB Useryayagirl HB Useryayagirl HB Useryayagirl HB Useryayagirl HB Useryayagirl HB User
    Re: Taking care of an adult with Down syndrome

    Dear Jessica,

    Talk away! that's what we are here for.

    Him saying you hate her because she is too much for you to handle is immature and selfish talk. However, you chose to be with him and to let her into your home, so you do need to deal with the situation. That doesn't mean that you cannot put your foot down or make changes. He is trying to deflect responsibility for his sister onto you. It is up to us to draw the line of what we can and will or will not do.

    Explain to him that you respect his concern for his sister, and of course you dislike what having her there has done to the family. But that she is not your child, and he has to make some decisions about her care because you have to go back to work. I suggest that you add that you will do what you can to help him find placement for her, but that you cannot take care of her.
    Am I right that you have a job outside of the home? Are all of your children his? How long have you been living together? Does he work and support you and your children? Are you married or living together? Does he help take care of the children?

    Downs Syndrome doesn't necessarily mean she cannot learn to do basic things for herself. In America she may be able to get financial support and even placement by the local county health department. Call the county offices to ask. Explain that she needed emergency placement, but needs to be put where there is expert care. This would be needed even if she was a child. But an undisciplined and abused adult can be very difficult. Is she a danger to the children? Has she hit anyone at her previous home? If she ever has, she cannot be around children.

    That your live in guy is her brother doesn't mean she is your problem or that the weight of her care should be on you. So you do need to have some serious and as polite as possible realistic talks with him and draw lines of what you can and are willing to do or are not willing to do. We must learn to draw lines for our selves, no matter what the relationships are.

    After you decide what you can do and what you cannot do, then let him know he has to find a resource for her other care needs. After you make a few phone calls you can give him some direction where he might get proper help and placement for her. Do this before she acts out toward one of the children.

    Take care of yourself and set boundaries. Get counseling for yourself if possible. You are still recovering from child birth and have your own responsibilities. She is not one of them.

    ~ YaYa ~

    Last edited by yayagirl; 09-25-2018 at 12:51 PM.

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    Old 09-26-2018, 05:31 AM   #3
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    MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
    Re: Taking care of an adult with Down syndrome

    Dealing with an adult with a disability is hard enough even when you do not have children of your own; but you are a young mother and it would appear that you need more support and SHE needs more than you can give her.

    Have you looked into day care (adult day care) for the disabled during the day? Finding her some assistance with trained caregivers who can work with her disability and help her become more independent would be the best gift you can do for her and will help your situation. I assume she cannot be left alone all day- what will you do when maternity leave is over? She needs care during the day.

    Can you talk to your boyfriend about speaking with her doctor to get some ideas of help ? Remember, you are in this relationship by is not your responsibility to take on this much. Wanting to help is one thing, but destroying your own health and taking time away from your kids is not going to do anyone any good.
    RRMS- dx 05

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