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?

CTN55,

We plan to move to Mississippi next year but not set in stone.

FIL is 74. Believe me, husband and I have had conversations about what is best for FIL and SIL considering their future. It's very frustrating because I am always the one to bring up these issues. He and FIL are out of sight, out of mind folks in that they deal with issues as they come or they put things off if it's too difficult to deal with. I have to do all the research, tell husband what to do and wait until he gets to it. We are looking into FIL renting while hiring a caregiver not ruling out places specifically suited for senior living. I can tell you now, that FIL will not put his daughter in a home. Husband is now bringing up the subject to his dad about of sisters future care little by little. He is still not forthcoming with his dad but I don't push too hard when it comes to SIL's care because I don't feel that it is my place and it would just stress FIL. He has already told me that he is worried about her future while reminding me that "well, she calls you mom".

XenaJada,
Husband and I don't want FIL to move back to his home because it's too far away and husband would find himself running back and forth for issues too often. However, if FIL wants to move back, we won't stop him. We would try to talk him out of it.

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.

FIL sounds like a big bully man-child who wants his way or the highway. This means it all gets dumped on you. Something has got to give and it WILL...eventually.

Can SIL not be taught to wash herself and clean her own bottom? Is she mobile at all?

Can you do this in 2 parts?
Maybe have hubby tell his father that he wants to take guardianship of sister, NOW.
Then have FIL move back home (or elsewhere).
Once FIL is out and DH has guardianship, move SIL into a home.
What can FIL do then? Chances are FIL wants her monthly disability check though.

XenaJada,

SIL is mobile but doesn't remember steps and sequences well. After she eats, she puts the dirty silverware back into the clean silverware drawer. Before I had my baby, I was trying to teach her to wash her hands but it seems that she has some issues with fine motor skills because she couldn't grasp rubbing her hands together. Scary because I've had to clean poop smeared all over the bathroom a few times and I'm pretty sure FIL didn't do that. Hand washing was not a thing at FIL's house because FIL doesn't wash his hands either. Husband already addressed that but to no avail. I make sure I wipe down the kitchen very well and don't touch anything in the living room. My husband told me that when he was little, his mom tried to teach her to wipe but she ended up just putting too much paper into the toilet until it clogged. Also, SIL helped me make a peanut butter sandwich but she would point at the bread and laugh. She also had some sight issues too because he has problems determining the depth of stairs and sidewalks. Even if there is no depth, she feels around with her feet before taking the next step. I have no idea how to teach her and don't have the patience to.

About my husband taking guardianship of SIL, I don't know how that would go over with FIL. Truthfully, it scares me to legally take SIL. FIL doesn't like being alone so I doubt he would want to move home alone. I'll bring it up to husband.

So sorry this is causing so much stress and worry for you and your husband. I hope you can find a balance that allows you the freedom to raise your children in a home maintained to your standards and accommodates your husband's concerns about his sister. It may take some time - please don't give up working towards what you want!

Is there a disabled adult day care program in your area or where you plan to move in Mississippi? You might do better with your DH and FIL if you could get your SIL into the day care. Not only would it get her out of the house for several hours a day, most of these programs would focus on occupational therapy designed to teach her to handle her personal and basic house cleaning needs. If DH and FIL see SIL benefiting from the day care - happier, more capable, more social - they may become more open to a disabled home placement. In my area there is a "school" for disabled children and adults that provides day only programs and runs dozens of groups homes for 4-8 compatible disabled adults. SSD and Medicaid pays most of the expense.

Your SIL may be more capable than you think. Parents tend to overly "care" for a disabled child - sometimes not developing their full potential. I remember when a disabled (down syndrome) cousin was evaluated at age 6 the assessment said she was functioning at a 3-1/2 to 4 year old level. The cousin was still wearing diapers because her mother thought she wasn't capable of potty training. Her oldest sister (in college majoring in elementary education) pointed out that most kids are potty trained by 3-1/2 so her little sister should be too - and fairly soon afterwards she was.

It's possible that the level of care your SIL needs and her ability to maintain her area of the home might improve to the point you may be able to consider her living with your family as long as she continues in the day program - at least for a time. My experiences have been that most disabled adults do better long term in a living situation with other disabled adults. Although my cousin loved playing with children when they were younger, when those children got older and had other outside the home activities, she became very lonely.

If is possible to look for a house with a second nearly house for FIL and SIL in Mississippi? Or a house with property where you could place a mobile home for FIL and SIL?

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.

CM, I hope I didn’t come across as wanting to threaten FIL...I was just thinking that he might listen to a social workers advice more than his family. And it would take the pressure off DH to be the bad guy. But if getting a SW involved would mean that they would be cited by some agency then that’s not my intent. I just don’t know these things work.

Not threaten, no, I didn't think you meant that. I just didn't feel that the incentive, and I do see what you were thinking with that, was likely to get anywhere useful and could make him feel miserable, inadequate and humiliated.

Karen, this is *insane*. The sooner SIL is the responsibility of her own caseworker the better. Did you say you had an appointment scheduled?

I reminded my husband today. He has to call the office to answer some questions with the intake coordinator.

I have not read all the posts. I did read some that are directing you to guardianship, DO NOT DO THAT. Do you want the responsibility for the rest of her life? Do you want to be financially responsible for her care? This is not something that should even be considered in my opinion.

As far as your FIL getting angry and throwing things. Oh h**l no, did your husband tell him that he can not treat you that way, obviously not. He is a manipulative old man and he has gotten his own way, he lives in your home free of charge, has complete control of everything and everyone. Time for your husband to grow up and protect his wife and child, if he can't or won't you need to think about your daughter, is he really the Male role model for her?

Sorry if that's offensive, I am so indignant about this, I can't believe how angry this makes me. Old man throws fit, every cows down. Nope, old man throws fit, gets thrown out. He's not a child you are responsible for, regardless of how he acts. I have no sympathy for him, life throws us curve balls, we deal with it we don't make it someone else's problem, period.

Isthisrealyreal is right. Not sure if you read my post but guardianship is forever it seems. In the state of NJ anyway. Hopefully your FIL has guardianship. Once SIL turned 18 she was an emancipated adult. Parents have to go to court and prove the person cannot do for themselves.

Your SIL needs more than Dad can give her. She needs to be in a place for people like her where they maybe able to work with her. I wrote earlier that the mentally challenged get Dementia. They can get volatile when they get older. Don't leave ur baby alone with SIL. You don't know what she could be capable of.

74 is not old. I am assuming that wife did everything, including total care of the SIL. Your FIL needs to make some big decisions concerning his daughter. This is hindsight, but she should have been in a program years ago. Even a 3yr old can be taught. FIL has it easy at ur house. Me, he wouldn't have brought a dog with him. The first time it peed he would be out of the house most of the time. My house would have been kept clean. Its YOUR house. Its time for them to go.

A huge problem is that no one in the family knows where the medical documents are from when she was diagnosed before age 18. Parents were not very organized and FIL doesn't know what doctors she was seeing as a child. Any advice on how to move forward.

[ohforcryingoutloud..!]

Well. That being so. It might be simplest just to assume they are all lost and gone; you can always be pleasantly surprised should a folder with all the info in it suddenly turn up, and hope it doesn't contain anything it would have been really handy to know.

Clean sheet, then. Does FIL even know what the diagnosis/es are/were? Roughly? Are you able to share that?

Note: because I'm in the UK the following won't necessarily be called the same things, and obviously funding is a far more complicated issue for you. But generally speaking the systems have more in common than you might think, and I can tell you that if a lady in her fifties with a profound learning disability were being assessed as an individual she would be supported by a named Key Worker, a psychiatrist, clinical psychologists and an inter-disciplinary community team - primary health care team, social workers, learning support, benefits advisers, advocacy, all things needful.

I am not pretending that any of this necessarily works all that well, mind. Just setting out the basic entitlements.

I would be extremely surprised if your local social services didn't operate towards broadly the same goals, which are to enable the vulnerable person to function as close to fully as possible given her personal challenges (which in SIL's case are, of course, immense).

Your county or state website will probably be your best source of information. You might also want to research support groups specific to SIL's kind of disability: Down Syndrome, cerebral palsy, microcephaly, whatever it might be. Most individuals within these groups have multiple difficulties, so don't let that put you off: pick whichever seems closest, get in touch, and if one group can't help they'll probably know another which can.

What about your own family PCP? Are they being co-operative?

I called the school that she went to when she was a teenager and they don't keep records that long. Called local SS office and they can provide letter stating that she is receiving benefits since (date) but will not say why. I am trying to get med records from her previous Primary care doctor,even though I have a feeling it will not provide much. She was only seen when needed and probably never had a physical since she was in school (believe it or not).

Countrymouse,
FIL knows nothing. Wife did everything down to getting his socks out of the drawer for him (according to husband). SIL has not been set up with a primary care doctor since she moved here. Thanks for the info. Husband is already losing the will to continue now that we don't have the diagnosis documents. Not very tenacious but I told him that we have to keep going so she can get the help she needs. I'll look into support groups. Thanks again. 

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

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.

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.

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.

Insurance companies require that you have a PCP and she probably has some sort of insurance?

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.

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?

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.

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.

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.

Are you okay, Karen? Cut off in your prime, there!

I'll be okay when FIL has a place to rent.

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.

Thanks for the kind words, Pepsee.

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.