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.
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.
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?
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.
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.
Karen, this is *insane*. The sooner SIL is the responsibility of her own caseworker the better. Did you say you had an appointment scheduled?
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.
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?
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.
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.
Can SIL not be taught to wash herself and clean her own bottom? Is she mobile at all?
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.
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.
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.
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 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?
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).
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.
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.
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.
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.
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?
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.
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.