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.
Do either of you know if SIL's disability is a heritable syndrome?
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?
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.
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.
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.
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.
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.
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.
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.
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.
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!