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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.

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Karen, the present situation is dire, but it may actually help to realise that the future is worse. FIL will age, have less physical ability and possibly dementia as well, and this may go on for over 20 years. SIL may be around for 40 years. Your baby will start walking within a year, and can’t live in a one-bedroom basement aged 2, let alone in 10 years’ time. If DH is letting you cope with all this now, he will need a major character change to take responsibility as things get worse. Your marriage is very likely to crack. That will be financially destructive, as well as upsetting the apple cart for DH, FIL and SIL. In the meantime, you are writing off your own life, jeopardising the happiness of your baby, and not doing the best for SIL.

Your options are to force change now, or wait until change is forced on you. It is not a good idea to keep trying to ‘cope’. Sympathy and understanding can be a menace. Stand back and look ahead. Now is the time to safeguard the future. Your last post sounds like a good first step in the right direction!
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Wow. Thanks for the info and support. I won't lie. The future looks daunting in regards to setting up assistance for SIL. I talked to husband and set up a medical appointment for SIL so that she can get a check up as well as get some documentation and go from there. Thank goodness that her dad's doctor (female) has experience with developmental disabled. Also, husband received a list of day programs that she can attend paid out of her SS funds for now. I don't think that it's a good idea for us to take legal responsibility for her (at least not at this point). I will definitely use the information that you all provided. I'll keep you posted.
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Karen, just want to say...I have been there and realize that this stuff takes time. It won't happen overnight. My Mom took my nephew in 10 yrs ago for him to go to Community College here. He flunked out, wanted to live with Mom. I had to get him a Special Needs Trust to protect his Moms insurance money. Medicaid for his insurance. Then filing for SSD. He works for ARC. This is a workshop for challenged people. He has a "job" he is paid for. But there are people there who are extremely challenged they keep busy. He is bussed to and from the facility. You may want to see if there is one in ur area or something similar. They are a State thing.
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Karen, just read ur post on Medicaid and just realized they moved to another state. There maybe a waiting period for Medicaid. Which will cover her dental and eye exams/glasses. So u may have to wait on getting them. Or, take out of her SSD money.
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Sorry if I am repeating anything. Just too many responses to read everyone. My eyes become strained.

Just want to mention, SILs Social Security check is hers and must be used for her. If FIL is payee, then yearly he must show how her money is being spent. You could be getting rent from her. Her food can be counted in. Any medical out of pocket. You may want to check with SS who is payee. It may have been the MIL. If so, a change needs to be made. There is a booklet online of payee responsibilities.
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Karen, Her birth certificate should show the hospital she was in. Maybe they will have records on Microfiche. They would show her initial exam. Maybe a doctor's name to follow up with. I was lucky. Nephew able to sign for himself. His Mom had a plan that had a local hospital and clinic associated with it. So, I was able to get all his records at one time. My SIL, who raised him after his Mom died, had gotten all these records when she took him in. She gave them to the new pediatrician. When she called to get copies of those and currant records she was told they purged them the older ones. What! His early records showed he had problems at birth! My SIL hadn't bothered to take copies. Always take copies.

I think what you are going to need to do is ...start from here. Its been 50 yrs. She needs a good physical and a neurological eval. (Just a thought. To get SSD they had to prove her disability. Records were sent to SS) With that info, you will be able to get her services.

Oh boy, is FIL like my Dad and believe me, I loved him but he would never
have lived with me. My Mom waited on him hand and foot. To the point she drew his bath water. He was self centered and took care of nothing. Like ur FIL, his part of the house would be dirty. So I can sympathize. TG he and Mom has no animals.
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Karen, when it comes to records you need to be her guardian or POA. If she is on SSD she must have Medicare and Medicaid. Need to find a doctor that excepts both. If not Medicaid, at least Medicare. Will just have to pay 20% and can take that out of her SSD. Once you get her signed up, sign paperwork allowing them to get her records from the other doctor. Her guardian will have to sign since she can't.
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Like CM I was thinking about the MIL. Maybe she was depressed because she got no support and she had no one knocking on her door to say "we can help". Its like having a toddler with Dementia. They can't learn. Don't reason. Since FIL seems lost when it comes to her care, he must not have been involved in it.

There are programs out there but sad to say, you have to hunt them out. With me its been a 10 yr journey but then nephew was put on the back burner when I had Moms care and house to deal with. Just got him set up with the state disabilities dept. He has a coordinator and a contact here in town. I have been told they will be there for the rest of nephews life. Eventually, when everything is in place, I can step back.
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Maybe a pediatrician for first visit. The office will be geared for children. This would be just to get her used to a doctor. My husband had a special needs cousin. He had the mentality of a 12 yr old. He was sent to a day school where he was socialized and taught. A friend sent her Downs Syndrome son there. Call your county disabilities dept. Ask if there are programs for SIL. Maybe you can start out baby steps. Ask if they know a doctor who is good with the Challenged. She may be comfortable with a woman.

If you plan on taking her for a check up I would go slowly. Internal exams and mamograms are pretty evasive. Women without her problem don't like them. Maybe a mild sedative before she goes.

Any programs or Daycare available to your SIL should be based on her income.
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Last post, I promise, and then I'll shut up, I promise. But one more thing to point out to DH.

What he said about the parents' fear that SIL would be taken out of the home.

Well, for one thing disability support groups are not in the habit of terrorising their service users by destroying their families, nor do they have the money to remove people to residential care on a whim. But that isn't the issue.

What is, is that if the situation stays as is, then the moment SIL encounters a mandated reporter and it emerges that she has no access to medical care and no appropriate personal support you bet APS will remove her. So if she gets ill, which she will; or if she injures herself; at that point they'll have the choice of either denying her medical attention or facing a lot of hard questions at a time of crisis.

So if he doesn't want her removed from FIL's custody, and he doesn't either fancy being caught up in potential prosecution, he needs to get his finger out.

Try NDSS. They have a toll free helpline and they should be able to put DH in touch with the right advisers. His family is NOT ALONE. There is help out there.
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Karen, remember what I wrote about my SIL? She never had much medical care either,except visits to a dermatologist for acne treatments. However, when she went to live with her sister, she began going regularly and had Pap tests and mammograms. A few years ago, she had breast reduction surgery! It’s all in the approach. A light sedative can be given. Denying her medical care. can be considered neglect.

You need to be proactive about this. By telling you not to divulge “too much information” FIL and your husband are admitting they know there is a problem. If someone else calls APS, you will all go down.
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It's questions such as, how do we get SIL seen by a doctor when she's so fearful of being handled? that the right support group can help with.

Seriously, I'm in tears here. This lady is fifty, and her father can't tell you how to reassure her? He and DH are thinking "Mom was a woman. Karen is a woman. Ergo, everything will be fine and Karen will know what to do"? I mean, have you had fifty years' training? Were you drawn to this specialisation before you met SIL? It's insane to drop it on you.

I mustn't blame FIL and late MIL and I don't. As loving parents they did their best, and they didn't know how to do better, and there wasn't enough (still isn't enough) outreach and support. But inadequate doesn't even touch it, and it's SIL who bears the consequences.

And you, of course. But you can understand, and you can speak.
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Oh f***.

Karen, all of that being so, what you have is family members who love this lady very, very much indeed but because of their profound mistrust and ignorance have severely limited her life chances. They are afraid for her, they mean to shield her, they sincerely believe they have done their best for her. What they have actually done is isolate and cripple her.

And on top of that, she has been deprived of access to standard medical care.

You know what this is leading to, don't you? I don't see you have a choice. Call APS - in confidence, anonymously if you like - and get advice.

And once you get past all *that* - the times she was born into, MIL and FIL's circumstances, any number of factors, meant that SIL's disability had a wrecking effect. The real tragedy is that it didn't have to. Even by the '70s, attitudes to supporting disability were already changing and better approaches were developed. This could all have been so different, it is heart-breaking.

You don't need anyone's permission to get guidance from qualified people. You don't have to name names, and I completely agree that it is much much better to encourage DH to take control instead. But if he won't, you'll have to.

You're right to be afraid of making things worse. *I'm* afraid of rushing in here, where angels fear to tread, and it's not even my family and I will never have to look any of you in the eye. But that's all right, it will make you cautious, and that's a good thing. Just make a start. Find out what's out there.
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Husband will not call APS because as far as he and dad are concerned, she is being taken care of (fed, clothed, bathed, lives in a fair clean home). She is naturally very happy go lucky, smiles and laughs alot so they assume rhat she is fine. Husband does agree that she needs socialization though. Husband and dad lived with her like this for years so it's not a big problem from their point of view. The other day, husband told me not divulge too much information because mom and dad were worried that authorities would take her out of the home. I don't know what all that was about. Their house was very dirty because mom stopped cleaning house when my husband was very young. Husband thinks she was depressed but never treated. She refused to allow others to clean her home and got angry if anyone would try. I can tell you that husband will not report it and I am afraid to open that can of worms. I will discuss it with husband first.
Regarding SIL's health, she had not had much care. Forget mammograms, pap smears, all that. She will not sit still for any of that. She gets scared, pulls away, cries and she is terribly strong. She won't even let me cut her nails because she says it hurts before I even do anything. I've read about medical issues that folks with her disability might get. I don't know if her disability is inherited but there is family history of breast cancer, diabetes, heart failure, high blood pressure all on mom's side. 
FIL would not be against taking her to the doctor to get check ups but how would a doctor be able to do any of that when she gets scared and agitated so easily? 
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I agree with CM. No medical care since 2011? No flu shots? Many folks with congenital developmental disabilities have co-morbidities of the heart. Has any of this ever been discussed with DH?

Do either of you know if SIL's disability is a heritable syndrome?
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Karen, if FIL is refusing to allow anyone else to take charge of SIL's welfare but at the same time he is doing nothing for her, then DH will need to call APS. I know how upsetting the whole period has been, I understand how worried and sympathetic he must feel towards his father and sister, but in the end this is about an extremely vulnerable adult who's getting zero care - and, worse, whose primary caregiver is blocking it. It doesn't matter what FIL's intentions, if indeed he has formed any, are: whether good or ill, the outcome for SIL so far sucks.
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Thanks for the kind words, Pepsee.
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You WILL be ok Karen. I know everything seems very overwhelming right now. But this is just a small block of time in your life. When we're 'in it' it feels like there's no end. But trust me, you'll look back and realize you can get through anything.

I really can understand how hard it is for hubby to over ride his father. With his dad being of sound mind, enough at this point to fight, it's not easy. 

No matter how bad my Mom got physically, nor how neglectful she'd become with herself and her house, I could NOT demand she do anything. It wasn't until enough confusion and forgetfulness became evident in her thinking, I found an opening and pounced.

Keep working with hubby, as a team, to get his families needs met. In the end you guys will be so much closer.

You know what you're doing and how to go about getting it done.

Sometimes there's just too much noise. 

There ARE brighter days ahead! Relax, and don't miss those special moments, that really are present in your little family, right now!
HUGGZ 🤗 
Pepsee.
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I'll be okay when FIL has a place to rent.
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Are you okay, Karen? Cut off in your prime, there!
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It might be an idea to find out about a guardian ad litem for SIL. That way she would have a completely independent advocate who would also have the experience to navigate the system.

I don't mean this to be in any way demeaning or flippant, but when I think of mothers in this situation Dumbo's poor mother comes to my mind. They will move heaven and earth to protect their children; what's really sad is when that leads them to reject outside support. I'm sure MIL did everything she could - except look ahead. it's so sad.
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I am not excusing FIL but I don't feel physically threatened by him. Just annoyed. I am still pushing husband to find him a rental and giving a realistic amount of time to do so but not too long. Husband did stand up for me after FIL had his blow ups but still handles him with kid gloves most of the time. 
I am the only one pushing to get SIL assistance but I rather do the work now than wait any longer. Husband wanted to wait until we move to Mississippi to start working on assistance for SIL but i told him that we need to keep going because if we end up not moving, nothing will get done and if anything happens to FIL, we are screwed. 
FIL is still sulking about being told to move out so it is a bit tense when he is sitting in his recliner staring at me in the kitchen. I am not changing my mind though. My daughter and I need the space. 
Also, when SIL smeared poop in the bathroom, that was in their upstairs bathroom. My daughter and I are downstairs with our own bathroom. If she does anymore smearing, FIL and husband takes care of it now.
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C, Hubby seems to be a minor player in this situation. So far, we’re under the impression that he doesn’t want to confront his father because he “doesn’t want to upset him”. Our poster is the one doing all the work. She agrees that SIL needs a better living situation, more than she herself can provide. She’s trying very hard but is doing it by herself.

I would start investigating facilities, like group homes, for SIL and let them tell our poster what she needs. They may even have ways of obtaining the information. But when I read about SIL smearing feces all over the walls with a baby in the home, my first thought was APS.
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You wouldn't have been able to get the records sent to you unless you have a HIPAA release for SIL. So FIL (assuming HE has a HIPAA release) would have to be the one to request the records.

Your FIL is a louse (the way he treated you when you were pregnant appalled me!). Your H needs to step up and protect YOU and your daughter. You can't be the only one who thinks SIL needs a better situation. Does H agree enough to stand up to FIL?
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She does have insurance. Her PCP is 5 hrs away and I just spoke to them and they are of no help to get records (lazy nurse). I think nurse just hung up on me. SIL was last seen in 2011 according to them. I will have to see if husband can talk dad into getting a lawyer (as recommended by one of the posters here).
I'm pretty sure FIL truly doesn't know anything. I don't think he was an over baring husband. I think he was just hands off and set in his ways. From what I saw, wife was the no nonsense one and yelled at him sometimes.
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Insurance companies require that you have a PCP and she probably has some sort of insurance?
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I just kind of wonder if FIL is being intentionally uncooperative because KarenBill is going against his wishes. Maybe he knows more than he says he does. Since FIL was always large and in charge, I’ll bet nothing got past him when SIL was growing up because he had to approve of everything. He may not remember exact names and places and dates, but I’ll bet he knows more than he’s letting on.
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Holy sh*t! She's not registered with a doctor???

When did -

Sorry.

Look. NONE of this is your doing or your fault, or DH's. Essentially poor old MIL must have dropped the ball some time before she sadly passed away (and if she was as worn out as one can imagine then who can blame her) and FIL never picked it up.

It's okay. So, we start again from Square One. In some ways there are advantages to that - no preconceptions.
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It is no wonder FIl outlived MIL.
This is common for the primary caregiver who DOES IT ALL to develop a terminal illness and/or drop dead and the person they are caring for lives on much longer.
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Are you thinking that for OPWDD or whatever it's called in NK, you need to show she was diagnosed as Intellectually Disabled before 18?

You need to get yourself an advocacy organization or lawyer who specializes in the disabled.
http://www.drnj.org/frequentlyasked.htm
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