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My FIL came to live with us 10 months ago with his 50 year old daughter who is developmentally disabled. She is like a toddler in that she can walk, feed herself, has limited speech but cannot physically take care of herself (bathe, clean her bottom, dress herself). For the first few months, I found myself taking care of all her needs as well as their large dog. My FIL had a stroke 16 years ago and has lost some movement on his right side but he can still walk, drive and make meals. I became upset that he ditched all his responsibilities and would sit on his recliner, browse the Internet or go for walks so after a while I stopped taking care of them because my husband wasn't taking care of his sister at all either. Me and DH sleep in the basement so I now spend all my time there. That forces FIL to take responsibility for his daughter and dog. My husband and I have discussed that we don't want to take his sister after his father dies; however, his father does not know that because he and late wife refused to place SIL in a home. FIL assumes that we will take her after he dies and insists that SIL call me mom. I don't like that because I am 9 years younger than her and I don't want to be wiping her butt but for the rest of her life. Its also difficult to go out because she gets into strangers personal space and talks very loud in public. FIL has sole guardianship so SIL is not on any waiting list for a home. I worry that when FIL passes, we will be stuck and be waiting years to place her. I feel bad about feeling this way but I don't want the responsibility. I have my own 4 month old and don't want to be responsible for a 200 pound baby. I also feel like our lives will be on hold because she is difficult to manage and we won't be able to travel especially overnight trips. I don't want to drop her off and leave her. We want to visit her and take her out on day trips but don't want the 24/7 responsibility. She also gets $1000 per month in Social Security Disability that can help pay. She is currently not receiving any in-home help because dad doesn't want to pay for it so she only bathes once a week.

My husband’s family includes a mentally challenged sister as well. She’s 59 now. While she was growing up, my in-laws refused to acknowledge that she was, as we used to say, “retarded”. She went through regular school and somehow actually graduated. At the age of 16, she still needed to be bathed and could not change her own sanitary pads. She was, as you said, a 200 lb. baby. She was spoiled and jealous and when we had children, my husband pushed to have her babysit but I refused to leave her alone with our baby. She did something to my niece but it’s never been spoken about. After her parents died, she went to live with her sister. Her sister refused to treat her like a baby, and if it’s possible, she actually “grew up”.

If you don’t have guardianship of her, you don’t have responsibility for her. Your husband needs to man up and tell his father what’s going to happen and not happen. Your FIL will try to intimidate his son into keeping his sister on after he passes. That’s a given. If your husband caves, I would refuse to be her “mother”. Yuk. That’s creepy. Why would she call you “mom”. That’s just...odd.

Check with your local Jobs and Family Services Agency and see if there’s any financial help out there. SIL may qualify for Medicaid. She should also have a caregiver come in and help her with her daily needs. Dad can foot the bill for this. Check out workshops for mentally disabled adults.

Stand up for yourself and tell them “enough!” You have your own child to care for. FIL can only use you if you let yourself be used.
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Reply to Ahmijoy
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I don't know where you live, but in Nebraska some of the people with developmental disabilities (DD) live in actual houses--usually 3-4 DD people with 24/7 caregivers. There are 2 houses within 2 blocks of our house--ranch style with wide doors and handicap accessible. Two or three days a week I see a caregiver(s) walking with a person(s) with DD or pushing them in a wheelchair. Many of them go to the local DD agency where they interact with others with DD. Some of the activities that they do here are making door mats from used flip flops, sorting recyclables, and sorting clothing for Goodwill. I know that the families of a couple of the DD's DO NOT live in Nebraska and that the DD person was brought here specially so that they could participate in the state's Developmental Disabilities Program.
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Reply to DeeAnna
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Karen, my heart goes out to ALL of you.

From listening to parents of adults with learning difficulties and disabilities, I've gathered that what happens to their children after they die is their greatest (and least solvable) fear. So I understand FIL's dread.

The responsibility on you and your husband, with your own careers, family and child to consider, is enormous. And it's not as if you volunteered, really, either.

But most of all, I can imagine the expression on the faces of learning difficulty specialists I know if they were to read of your SIL's position. They would be *horrified*.

Best practice focuses on client-centred care. How can SIL be assisted to the best possible quality of life? How can she be helped to achieve her maximum (no matter how limited) potential?

I don't have the answers, obviously; but I am virtually certain that treating her simply as a dependent two year old wouldn't be one of them.

Rather than confront FIL about this - tell him he's been doing it all wrong all these years, tell him you've no interest in continuing what he and his wife devoted themselves to so lovingly, tell him the second he's gone SIL's going in a home, God forbid, as if you would! - I'd start looking for external support and services for SIL herself. Start developing a network of contacts and advisers, find out what resources might be available to *her*, as a person in her own right, rather than some kind of animated cabbage patch doll.

There have got to be better answers for *her* than becoming the dependant of people who, for the most obvious and natural of reasons, cannot know or love her as her parents did. It's late to get started, but God willing it's not too late.
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Reply to Countrymouse
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Please make your decision clear to FIL as soon as possible so he can start making other plans. Is it possible that your SIL would actually do better in a care facility geared to her needs? Socialization?
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jeannegibbs Jul 5, 2018
Rovana, I really think that she is likely to be better off in a facility geared to her needs. There would be other developmentally disabled adults there for her to interact with. There would be games and and activities and story time and other fun things, some of which might even be somewhat therapeutic. Of course, the facility should be checked out thoroughly, and monitored throughout SIL's stay. Perhaps that is a role her brother would be willing to take on.
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I have TWO cousins who could NOT be MORE different. The older cousin is very talented and sings opera and is a Dietician while her younger sister (my younger cousin) has Down's Syndrome. For years, their Mom made the younger sister just sit on the sofa and play with a ball. (Their Mom did this because they lived on a farm and raised hogs for many years and she didn't want the younger sister to accidently get into the hog pen). The girl has never talked or spoken to any of us relatives when we visited them or they visited us. A couple of years ago, the older cousin become the guardian for her younger sister and placed her in a Group Home. The younger sister is SO much more social--she attends activities, she sings in a special choir (I have a hard time believing this since the younger sister never spoke a word for 50 years), chooses her own clothes, and is a completely different person now that she is no longer living with her Mother who told her to "Sit still" and Don't Move".

Start researching the group homes in Mississippi NOW and put your SIL name on the list as CTTN55 has stated, the waiting lists are long. Plus that will give you time to visit the various group homes and decide which one you want your SIL to live in and you will not have to make a "RUSH" decision if something happens to your FIL.

I also like the idea of your FIL renting a different house than the one that you live in. You need the privacy and you need a clean house for your child. Please keep us updated as to what happens when you move. Good Luck!
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Reply to DeeAnna
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So, what you’re saying is that FIL calls the shots. And it sounds like DH is more of a problem than FIL and even SIL, simply because he won’t react other than mollify the other 2.

I don’t blame him for not wanting to do personal hygiene care for his sister. I am a woman and I was thoroughly disgusted having to take care of my SIL’s very personal needs. But, having said that, everyone is right. She needs a caregiver who can perhaps teach her how to care for her own personal hygiene. My SIL was functioning at the age of a preschooler as well. But, as I said, when she moved in with her sister, the transformation was amazing. They taught her how to do things and forced her to do them for herself. If she didn’t wipe, she walked around with an itchy butt. So the next time, she wiped.

Maybe DH thinks that you’re blowing smoke. As long as things continue on the way they are, he doesn’t really have to do anything, does he? I’m sorry, I forgot that this is YOUR house. Sort of. They chased you into the basement. If FIL has his own home, time for him to go back. Are you maintaining his home as well? He will always mourn for his wife, but it’s time.

I know you can’t force DH to step up any more than I could force my husband to speak up for his sister with his parents. I’m not sure what it is, why we can’t do it. But I did refuse when my husband was going to tell his parents (without asking me!) that his sister could come live with us.
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Reply to Ahmijoy
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What does her $1000/month go for?

How is it going with you spending your time away from them? Is DH pitching in more? Is Father resuming some of his responsibilities?

Poor FIL. It is very, very, very hard for a parent to have a child disabled and unable to care for her own needs, or support herself. I feel a lot of sympathy for him. But the solution is not to interfere with the lives of other children in the family!

Of course your husband should tell his father that the two of you will not be caring for her in your home after he dies. He ought to understand that as he makes his plans. I think it would be much better for her to move into an appropriate care center now, while she will have him as a frequent visitor while she settles in, and he can advocate for good care for her. It will be a double shock for her if her father dies and then she also is uprooted and has to adjust to a new environment.

FIL has worried about her since her disability became obvious. He thinks he has worked out a plan for after he died. That is responsible of him. But the plan is not going to be carried out. So he needs to know that as soon as possible, to start making other plans.

Have you told him that you don't want your SIL to call you mother? And that is really your decision, not his?

I do feel really sympathetic for your FIL. But you really need to retain your own decision-making rights, not only for your sake, but for SILs as well.
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Reply to jeannegibbs
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"FIL gets $2400 monthly in pension and SS as well as $1000 for my SIL. He pays property taxes on his home that he still owns but he doesn't live there. He also pays for his vehicle and buys snacks and toiletries for himself and daughter. Other than that, the remaining money goes to savings."

He drives? He doesn't pay anything to you for room and board for himself and his daughter?

What is his financial situation (assets)? Do you envision him living in your house indefinitely? What if he needs more care?

Waiting lists for group homes can be very long. Your H's sister could be put on a list now.
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Reply to CTTN55
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Sounds as if FIL has it all his own way.... I thought that bothered you? It's also possible your husband won't tell him about SIL's future because he's afraid his dad will think less of him. For HER sake, she should go where there are others she can relate to, play with, learn with, and that are more like her. We have those group homes for developmentally disabled people here, too. Some of my friends work in them, and one just told me she loves it; that it's a great place, and the residents are well cared for and have lots to do; some even get to have outside jobs; a supervisor goes with them.
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Reply to mally1
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Teaching SIL the basics of living as far as she can learn should not be up to you any more than it should have been up to me or my SIL’s sister. Mom and Dad dropped the ball. Remember I mentioned in a past post that my in-laws turned a blind eye to my SIL’s challenges and let us deal with it. It was in its neophyte stage, but even 55 years ago, there was some help for those we called “retarded”. Your FIL never sought it out for his daughter any more than my in-laws did for their’s.

There are adult workshops and daycares for people of all mental capacities in just about every city. Share my story with FIL. Assure him that if he insists on your taking guardianship of SIL, you will require she goes to some sort of workshop or daycare every day and that’s what her money will go for, in part. She will not be carried around on a satin pillow. You will also find occupational therapy for her, long term, and she will be taught the basics of hygiene. You can’t raise a child in a household where one of the members smears feces all over the walls. Impress upon FIL that if, at any time, SIL’s Care becomes overwhelming, she will go to a group home. If he doesn’t like it, too bad. Assure him you will abide by this reality, not out of cruelty or being uncaring, but out of necessity.
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