SIL has developmental disability and her father refuses to place her in a home. Should my husband tell him we don't want the responsibility?

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.

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.

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?

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.

Thanks for all your feedback. My husband is not open to letting his dad know his feelings about putting sister in a home because he doesn't want to worry him. My FIL will not intimidate us but he will try to guilt us and he insists on keeping her even though he is getting older and slowing down. He never did much exercise before but now he goes to physical therapy and the gym because he "has to stay alive to take care of her". He and his late wife stopped trusting caregivers because there was an incident at SIL school when she was a teenager where teachers allegedly wrapped her in a mattress and confined her to a closet. That allegation was never substantiated so they pulled n her out of school and never put her back in school. Sine then, my SIL sits home and watches TV.
My SIL calls me mom because I was doing a mom's role before I stopped doing it. She doesn't know better but FIL encourages it. I dont say anything.
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. I suggested he pay for someone to clean the area that he and daughter lives in but he refuses and tries to clean himself which is barely. He doesn't want to spend on a caregiver because he doesn't trust them. 

My husband nose give her a bath twice a week and haircut every other month. FIL has no choice but to pick up the remaining care. There is no way FIL would agree to placing her in a home. I agree SIL would do better in a home because now she sit and watches TV and gets no exercise or goes out. 

We now live in Illinois but husband and I are planning to move back to Mississippi. We are taking FIL snd SIL so i will have to research what is availablefor her there.

Again thanks for the feedback and opportunity to vent. 

"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.

Jeannegibbs

I told SIL to call me by my name but she forgets and keeps calling me mom. I just don't answer if she does. I do answer if she calls my name. I don't say anything to FIL about it.
Now that I am downstairs alot, I've let my husband know to have his dad hire someone to clean their bathroom, bedrooms and living room since that is mostly their living area. I still clean the kitchen and my living area downstairs. My husband asked FIL to consider but he insists on doing it himself so their area doesn't get cleaned much. The living room is terrible dirty and I refuse to put my little one on the floor or even on the dog hair covered couch so we only bring her up for a few minutes a day so that FIL and SIL can see her. My husband and I agree that we need more space because our downstairs living area doesn't have a living room and the bedroom doesn't provide much space for little one to move around. We are considering asking FIL to rent temporarily until we move to Mississippi next year. He would be able to manage because my husband's adult son would be living with FIL rent free in return for helping out around their rental house. That way, my house will be clean and we can have space. FIL will not be warm to renting because he is very clingy to his son and doesn't like spending the money for something he doesn't want but he will have to.

CTTN55

He does drive and doesn't pay us anything but we didn't ask him to. He does pretty well financially and has no debt. My husband and I figured that whatever savings and the house can be sold to help place SIL when the time comes. Plus we will be asking FIL to rent soon so that we can have some more clean space for our daughter to grow.

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.

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!

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.

Hi Karen,
You are a better woman then me, and I'm not afraid to admit it. The father, disabled adult who can not perform ADLs and a big hair shedding dog,? Oh no, I couldn't do it. I surely couldn't watch my home fall into filth and dismay. And then the added cost for food and utilities. Costs to have the furniture/rugs cleaned when they do leave. Plus being trapped in a bedroom in the basement with a new baby. I just couldn't handle it..... My goodness you guys went way above the call of duty. Bless you both! Seriously!
💖That's love right there.

Now I'm wondering why they can't go back to fils house? I apologise if you mentioned it and I missed it.

Keep updating here, it will definitely help get you through.🌹Enjoy that little doll, it goes WAY to fast.

Pepsee,
My FIL cannot go back to his house because it's 5 hours drive to get there and he has no friends or family to help when he needs it.

My husband finally told his dad about renting his own house but my husband seems to be going back on our agreement by asking if there is any way FIL can stay because his dad isn't taking it well. I almost blew up at husband yesterday because our house is small and we would still have the cleanliness issue especially with the dog. I don't understand why he wants to minimize our our space to make his dad happy. I held my ground and told him no. I do feel bad because now I feel like I'm the bad guy in all this but I refuse to concede because I know deep down that it's the right thing for us and if I let FIL stay, I will regret it later. FIL is sulking every day and pulled the crocodile tears thing too. Husband told him that he and daughter will not be alone because adult grandson will live with them (rent free) in exchange for to helping out. Also, husband and I would still visit multiple times a week. FIL actually asked my husband how much he should charge grandson for rent. FIL doesn't pay a dime to live with us now. I can't believe he ask that.

I also discussed with my husband about placing SIL on waiting list for a home because placement can take years. Now he is saying that he wants to have her live with us and he can hire caregiver come in for the day. Truthfully, I don't agree with that option because I feel that it will backfire and end up affecting our relationship down the road. I told him my feelings of why I feel that way but he seems set on his idea. I guess we will have to see how that goes. I have a feeling that he will regret it because he is not much of a hands on caregiver with his sister now and I doubt that will change. I told him that when daytime caregiver is not there, he will pick up the slack (just so that he knows). So I got him to get FIL to agree to visit our local developmental disabilities and medicaid offices to get the ball rolling and create a network for SIL. It will be a long and bumpy road since they will be starting from scratch to get her assistance.

Funny thing, my husband told me that his dad said he needs to find a new wife but he wants her to be a professional in special needs people to take care of him and his daughter. My husband and I laughed.

Crocodile tears? You think he's putting it on?

Look. I know how frustrating and worrying this situation must be for you.

Do you really think it isn't at least as worrying for your FIL?

The point to push is that you all of you want what is best for everyone in the family. As SIL is the least able (among the adults) to help herself, it is the right thing to make her needs and her future a priority.

Your husband's thoughts about keeping her living with you come from that: his aim is laudable, it's the means he isn't thinking through clearly. The point is not that SIL doesn't deserve the best possible care, it's that living with the family once FIL is no longer able to support her (he's already well on the way) is not going to be the best option for her. She will do better in a structured environment with specialist support.

Hence FIL's saying he needs a wife with special expertise in learning disability. I have to say I don't think I'd have found this terribly funny. Yes. That's exactly what he needs: he needs your MIL back, and in good health, so that the two of them can continue to provide a dedicated care team for SIL. Unfortunately...

This will sound harsh, but I am rather upset. Could you please take a few minutes to imagine yourself in your FIL's shoes and try to think how he feels. He has lost his wife, not long ago. He is too old to care for his vulnerable daughter. The best plan for her will take her away from his direct care, which will relieve him of a burden he can't handle but it will also leave him bereft of the child who has occupied half his emotional space for more than fifty years. He loves that "little girl." He may well look on it, too, as a betrayal of his wife's memory.

I repeat: I realise this is not the only thing you have to think about - you have a husband, a child, a life to be getting on with - and I understand that the whole problem is one you could do without; of course, I don't blame you. It is only natural to want the situation sorted out and off your hands. It also, crucially, is not your fault that FIL and MIL didn't make a watertight succession plan twenty years ago: they ought to have done. They knew this was coming. Maybe they weren't well advised, whatever.

But remember that all of these issues are not only problematic for your FIL and your DH, but also harrowing. Be kind.

Oh Karen, it's affecting your relationship now. Down the road it will just get worse. You will build quite a lot of resentments against all three of them.

This is so unfair of hubby to do this to you. You should be able to enjoy your new baby in a clean and happy home.

No, this is NOT the right thing to do. Especially at this special time in your life. There are people trained to care for the elderly and disabled. There are funds and care residences available to them and their needs. You and your home are not it!

You are absolutely right in not conceding. Your baby deserve a clean, organized home with a happy Mom to raise her. She did not ask to be born. You are her voice, keep saying NO. Baby will be crawling soon and needs an open place to develop, roam and explore. Tell hubby this is her house not theirs.

Hubby needs to get to a realtor fast and find them a rental. That's the right thing to do.

Good luck Sweetie, and stick to your guns. Do Not let anyone, anywhere make you feel guilty! You're
 not responsible for cleaning up the mess your in-laws created, regardless of their feelings now. Yes it is sad, yes you can help but not by being shoved, with your 4 month old, in a basement bedroom. You do NOT have to give up your home!

How old is FIL? I know he had a stroke 16 years ago, but what's his health like now? How old is your H? (He has older children?)

What's going to happen if FIL becomes weaker and needs (more) help with things? He doesn't like to spend money, so is he going to be willing to hire a caregiver for himself? Or are you going to be expected to be that caregiver?

There are five people in the equation here: Four of them would have a much better life if things were different. Why is the 5th (FIL) allowed to have his opinion outweigh all the others? You and H deserve your own home to raise your baby. You baby deserves this. Your SIL deserves a living situation that would meet HER needs much better; one that would provide her with socialization and opportunities to become (at least a little?) more self-sufficient.

4 is greater than 1. Don't sacrifice it all for FIL.

Countrymouse,
I know that I may come across as uncaring but I agreed to have FIL and SIL come live with us because I felt bad that he lost his wife and couldn't handle the remaining responsibilities but I had no idea how much this would take a toll on my home life. I am resentful because MIL and FIL didn't do any planning aside from planting their issues onto their son. It's not fair. I don't want to be resentful of FIL but I can't just ignore my feelings, grin and bare it or I will end up leaving for my own sanity. My FIL is selfish in that he sat by and watched me while I cooked cleaned, and took care of his daughters and the dogs daily needs (while up until 9 months pregnant) and assumed that all was ok. He didn't put himself in my shoes. My husband told him that he should hire someone to clean knowing that he can't physically handle it but he refused even though the dog sheds like crazy and pees in the house sometimes. He doesn't care that I spend the majority of my time downstairs. So I'm sorry, but I started to not fall for the crocodile tears long ago. I don't mind helping here or there but I refuse to put my life on hold to make him happy. I will continue to push husband to develop a network for SIL so that she can receive care. Believe me, if I don't make the effort, SIL will spend the rest of her life in front of the TV.

CTTN55
FIL Is 74 and takes meds for blood pressure and stroke;otherwise, he is fairly healthy. He has lost some movement on his right side but he still walks, drives and makes meals. He gets a pension and SS so he makes enough money to hire a caregiver but he doesn't want to. I don't know what will happen when he gets weaker. That will be up to him and my husband. I suggested to my husband that they can look into assisted living but that will be more expensive than renting and hiring someone. My husband is 43 and has 2 grown sons (not living with us) and we have our 4 months old. 

Karen, I don't think what is being asked of you is reasonable, I agree with you completely about that and I don't blame you for being resentful. I also feel it's a pity - irresponsible, even? Could we say? - that SIL's care plan wasn't addressed; but on the other hand it's not like that's always an easy thing to do, and I don't know, maybe the family had bad experiences with social workers and health care workers or something and couldn't work with them. Thank God you're taking it in hand now!

So what's the plan with FIL? It sounds as if he depended far too much on his wife. I know that doesn't make him any more likeable, but it does mean his new situation is that much harder for him to adjust to. Is he going out at all? Does he know any of his contemporaries locally?

Countrymouse,
I know that navigating the system for SIL is not easy but they went as far as applying and receiving SSDI for her all these years. I just don't know why they didn't go further and get her into the network.

FIL did depend on his wife for everything. He admits that much. My husband and I both tried to get him to visit the local senior centers to meet people and keep busy but he never went back to any of them. When asked why, he says that the people are "too old". Granted, they are (probably) in their 80's. So now he just stays home all day. My husband also tries to keep him busy but he doesn't seem to like any particular arts/crafts. Husband had him choose items from FIL house that he used to do for fun. Now the items just sit in FIL bedroom and collect dust. FIL even tried online dating but he doesn't try to talk to any of the people on the sites. Husband just leaves him to sit on his recliner and sleep /watch tv. He does go out for walks and drives to the local store. Husband always suggests to take SIL for walks but FIL says he doesn't want to.

FIL may be concerned if she is in a home they may give her "Happy" pills so they won't have to deal with her much.

I would put my foot down, my house will be cleaned at your expense 2x weekly. You don't want to...so the rest of us live like pigs? Nope, deal with it daddy. You are not the head of this house. Oh by the way, how much should you charge your grandson for living with you and helping you out? How about the same amount you pay us?

74 years young and taking complete advantage of the goodwill extended in his time of need. Not sure about that, look at he sat on his keister while his DIL was 9 months pregnant working her azz off to keep the house running. He just exchanged his dead wife for his sons wife.

Stick to your guns and make your husband provide his daughter and wife a safe livable space. Move dad and sister to the basement if it is so okay.

Karen, as I read your posts, I have to wonder how it got to the point that FIL controls your life. You let SIL call you “Mom” because you didn’t want to upset her. Hubby doesn’t want to man up and tell Dad plans need to be made because he doesn’t want to upset him. I believe you don’t want to do anything because you don’t want to upset anyone. So you stay in the basement like little mice.

Tell me, are you afraid to strike out on your own? There is low income housing everywhere. From Secrion 8 to Mobile Home Parks, there is a home out there for you, hubby and baby. Have your stepson stay with FIL, get some caregivers and get your own life.

Boy do I give you credit. FiL, challenged SIL, dog and 4 month old baby. There are daycares. Being on SSD Medicaid may pay it fully or partially. My Moms DC bathed her.

Just found out that a woman I know was asked to be guardian for a cousin when her Aunt died. This was 15 yrs ago he is 55. This woman is approaching 80. Has health problems and so does her husband. She has requested that the state take over her cousin's care. The state is pretty much saying no. So I know now I will never take on a guardianship with my nephew.

Ahmijoy,
No ma'am! FIL lives with me. My husband and I both worked to pay for this house and both our names are on the deed. I don't plan on moving anywhere unless my husband refuses to move FIL out and he knows that if that doesn't happen, he won't be happy either.
It's not that I am afraid to move out, I don't want to because that would cut into savings. We have to save and plan for our old age (unlike some people). Why should l pay more to move somewhere when we're already paying bills/property taxes on my place? If I move out, FIL will start paying rent.
FIL has so much control because my husband handles him with kid gloves and I don't confront FIL. I used to confront him with my concerns and he would blow up and storm out. That happened twice while i was pregnant. The first is when i told him to close the fridge because he would leave it open while making lunch. He threw the food all over the kitchen. The second was when i told him that he had to start letting his dog out after it pee'd on the floor so he stormed out and told me I was going to be a bad mother. Granted, i know that he was still grieving his wife and adjusting to the move so his emotions were raw. However, he never apologized for either outbursts and I haven't forgotten (especially about the latter). So I quit talking to him and now have husband mediate. SIL calling me mom is the least of my worries because she has the mind of a 3 year old and doesn't know better so I don't hold anything against her.

JoAnn29,
SIL is not on medicaid. She gets money from Social Security Disability. I remind husband every day now to make time to bring FIL to state offices to apply for medicaid and disability assistance. I let him know that if he waits and God forbid anything happens to FIL, he will pick up the slack to take care of his sister until he can get a caregiver. I told him that i don't mind helping but he will do the majority. I know that scares him because he hates giving her baths and refuses to clean her butt. Husband has a habit of waiting until the last minute to take care of important matters but now I know where he gets it (from his parents).

Isthisrelyreal,
I can't move them to the basement because neither of them can walk up that many steps and the kitchen is upstairs. Also, the basement  bathroom is not set up to be handicapped friendly (bathtub). 

Good Heavens! PLEASE don't let this break you and DH! I'm glad you've no intention of letting that happen.

I hope this might help: it's one thing to step up in a crisis and provide support until everything is settled down. That is what you have done since MIL's passing away followed by rescue of FIL and SIL, fine. And that was a year ago, was it? - coming up for.

So now it is time to look forward and move ahead on a new plan for the new phase in FIL's and SIL's lives.

It seems to me (not having to do it, I agree) that the key thing here is to make DH see what is in his family's best interests; the whole of his family, but in particular his Dad and his (much-loved, I don't doubt) sister.

Squatting in your house is not it. Dad needs to be in an environment where his bereavement and loss can be compensated for by new relationships among his own generation. SIL needs skilled support, and a stronger structure than a young family on its own can give her.

You wouldn't be abandoning either of them. It's not like you'll be leaving the area, or sending them into space! But both of these individuals have needs which are, or will become, a full-time job, and they deserve to be in a setting where that can be properly done. It is simply unrealistic to try to combine their care with standard family life - *especially* as it isn't DH who would be inputting the actual work.

It sounds as if DH is so far stuck at the point where you feel that sacrifices have to be made, but you're not thinking clearly about what those sacrifices can achieve, never mind what they cost. He needs to grasp that the burden on you (mainly) and him and your young child isn't the issue. The issue is whether taking on that burden of care is going to mean a good outcome for FIL and SIL, and I would argue strongly that no it won't. Trying to take care of them in your home will not give them what they need.

When are you seeing people about SIL? Have you had a chance to do any research about communities and facilities near you?

When are you planning to move to Mississippi?

Can FIL and SIL move back to FIL's house?
Sounds like they only moved to your house because FIL was so devastated after losing his wife. They need to move back home and get help with SIL.

SIL actually NEEDS to be in an adult group home. I know someone who has a severely autistic son who at 18 wore diapers and could/would wipe himself and totally dominated the house and daily life. They finally got him into a group home and he is THRIVING. Within a month they had him using the toilet on his own and cleaning himself. He has a "job" riding with the transport van and getting in and out, opening the door for passengers, making sure they buckle their seat belts, carrying things (he is BIG and strong).

I apologize beacuse I know absolutely nothing about caring for a disabled child, so I hope the posters who are familiar with “the system” chime in...But in this day and age, with all the ads I see on TV for ARC and inclusion, is it even ok (legally) to sit a disabled person in front of a tv all day without therapy and socialization? Without getting the entire family in hot water, would a visit from a social worker be enough spark to make FIL do the right thing for her? Or would that involve APS?

It is not okay, no. If a facility did it, they'd be in serious trouble.

But I don't think edging towards threats or sanctions aimed at FIL is the way to go. A man of 76 can't suddenly make himself capable of providing the same kind of close, intensive support that mainly his wife had been delivering day in day out for over fifty years. What's needed is an entire new approach to getting SIL high quality care - and in the long run this could all turn into a very positive development for her.

76? Where did I get 76?! How old is FIL, remind me?