You say that your husband disables his son....and you are probably right. People with Down Syndrome NEED stimulation to develop. You can never know what they are capable of until you give them challenges. Did he never research the subject?

Ok,  I have a daughter who has Down Syndrome and although she isn't book smart she sure as heck is street smart . Has your husband always tried to keep his son at home? If he did he was doing him a huge disservice. Like all of us, his son needs to meet people,be out in the outside world, have friends, live his life. He is a human being who needs to live..  not be stuck in a home that is a cage for him 

I realize that I'm judging based on very little evidence so please forgive me that 

Why won't he let his son go into a group home? It's not as if they are institutions.... I'm not actually sure whether they are the same as "foyers" here -  they are structures with activities organized and people whose job it is to set up daily routines that help the people living there to grow and blossom. They are not jails. My daughter can hardly wait to get a place in one of them because she wants to have an independent life,she wants to live for herself. Why doesn't your husband want that for his son?

My uncle is 67 and has Down Syndrome. He is older, so education for folks with Down Syndrome may have changed, I don't know, but my uncle when to a seperate school back in the day. They didn't integrate Down kiddos back then. My uncle was raised to function for himself as much as he could as my grandparents knew my uncle would outlive them. I'm on the west coast but when I fly to Ontario to visit my uncle, he is living his best retired life. He graduated from his school and got the grade 10 that he was supposed to get at that time, got a job at a well-known thrifting organization in Toronto and met his best friend at 15. They worked together part time at first, then full time starting at 16. they retired at 65. They are best friends to this day and both are 67. My uncle was taught basic banking skills and budgeting by my grandparents. They had him buy his condo way back so that he'd have a home when my grandparents passed. My uncle does his own laundry, grocery shopping, cooking including having nice meals waiting for me when I arrive. He was even gifted a poodle puppy and raised her and took care of her for 22 years until she passed of old age. She was the most well cared-for dog I had ever seen. My uncle made verterinary appointments on his own and knew when it was appropriate to take "Dumpling" to the vet.

My uncle went to the doctor, made his own appointments, went to the dentist. When he was diagnosed with high cholesterol, he made the decision to eat healthfully rather than take pills and he lost over 80 pounds. He walked a lot and to lose weight and did some organized walks for charity, one of them being for Down Syndrome.

So, this goes to show you how well a Down Syndrome person can do when they are raised in preparation of functioning on their own. My uncle has done way better than most of the assholes in our family LOL.  My grandparents saw no reason at all why my uncle couldn't shower, learn to cook, etc. My uncle had been on his own for 40 years now. My family is f*cked and extremely dysfunctional, so my grandparents knew that my uncle would not have other family members look out for him. I'm the only one who visits him and I don't live in the same province as him. His BFF is like another uncle to me. BFF is the same. He's had his own apartment for decades and raises budgies. 

I'm super proud of my uncle not just because of what he can do, but because he did not turn out like the rest of my insane dysfunctional family. LOL He's awesome!

There is no way that you should be responsible for a 22 year old man in the bathroom. Why doesn't your DH take his son to work with him? Nothing about this situation is fair to you. Find the posts of JustMakingTheBest - her SS has Downs and she is very involved in his care - but in fair manner. Your DH is totally taking advantage of you.

Your husband is doing his child a disservice. What does DH think will happen if his son out lives him? DS has Downs. He may be disabled, but he should not be spending his time at home. He needs interaction with others.

There are parent groups here. The local one runs social groups for those with Downs. Does DH go to a parent group? Does DS have interaction with his peers?

Taking him out of school would have been a mistake here. Here when someone ages out of school services, they point the family to available community services.

Now is the time to investigate group homes. Now is the time to find one that is a good fit for him.

You have a DH problem, not a SS problem. 

Seriously, shame on your husband for stealing your life like this. 

Good Lord. How? I would be ANGRY if I was you. This situation seems much worse than it should be, thanks to the way your husband has raised his kid. He literally made the issue worse and then foists most of the responsibility on you (no authority to make real decisions that would have helped tho!). 

How do you leave? I'm wondering how the hell you STAY? 

this man and his ill raised special needs son.

Stop that.

It is time for you to inform your DH that your life now comes first. His special needs adult son needs to be in an environment where he is held accountable and works with others who are going to have to have a special needs life.

QUit fearing some comment your DH made many years ago and inform him that his son must be transitioned to a group home where he can be part of a dynamic communty rather than allowed to crap his drawers and have you wipe his ass.  He needs to be supervised by professionals rather than a coddling daddy and SM.

Take care of yourself..... for a change.

smh.

You have gotten some good advice here.

Of course this should not all be falling on you!  And while I get the financial side of things there still should be a better option.. and his son deserves a better and more enriched life than you can give him at home.

As others have said.. a group home isn't jail.. it is actually an opportunity and eventually a necessity.  Unless your SS has other medical issues that make the likelihood of him living a long life (longer than your husband) unlikely.. his son is going to have a very difficult time surviving if your husband hasn't laid the groundwork with him to live independently of your household.

This is incredibly unfair for you to basically bear this burden almost all alone.  

I would tell your husband that you need to return to your office.. alone.  That he needs to figure out plans for his son.  Whether he gets a 2nd job to pay for the daycare.. whether he gets him enrolled in some program.. whether he gets him accepted to a group home.. something has to give.. maybe HE could ask to work from home?

It's his problem now.   You must find place for him to live.  It's will have to be done at sometime.  Are you going to br 80  yo old and still take care of SS.  You are giving up your total  life for what.    Face facts. Jud has to go 

Rags stated you're killing yourself, and I wouldn't be surprised if the stress IS taking years off your life. He also correctly pointed out that you're martyring yourself - why are you, an unrelated adult, the one making all the sacrifices here? It's simply not sustainable. Why are you living a life you never wanted? What would your H do with the son he's crippled if you weren't around? 

Please, PLEASE get off this crazy merry go round. Make an appointment with your doctor; get a thorough physical and tell him/her what's going on. Then, tell your H your doctor has warned you're at risk of heart attack/stroke/whatever; that you're sorry but he'll have to make other arrangements for SS because your health is at risk. Give him the number for Social Services, and DISENGAGE.

I know you love SS, but right now you're part of the problem because he needs more than you can give him. BOTH you and SS are being damaged by the current dynamic, while conveniently your H gets a break while at work. You've lost yourself in service to your H's misguided beliefs about what's best for his Downie son, but you're also the lynchpin the dynamic rests on. If you find your strength and insist on change, your H will be compelled to do something.

Please draw a boundary and save yourself before your health breaks down completely.

It's nice that your DH wants to protect SS from abuse, and i'm sure he feels like a saint for adopting him in the first place. What a hero your DH gets to feel like! But....your DH isn't the one doing the majority of the caretaking. That's what he has you for! And you do it while also working?! So, SD gets to "take" him when your husband dies, but as long as your husband lives, you have to do it?! No. Just, no. I hate to recommend ultimatums but if your DH doesn't find either a group home or at the very least some type of adult daycare combined with hired help maybe part-time, you should walk. No way should you be doing this until your husband dies and releases you from your burden. 

If you leave him, what exactly will he be able to do? Seriously? 

Is he in a position to retire and take care of his son full time? Will he try to "make" his daughter give up her life to provide care? And honestly how dare he "tell" his daughter she will "have to" take him in when he passes? It was not her decision to have a child or stunt a human so much that they are incapable of basic care (butt wiping". 

Out of curiosity, what was the daughter's response to that? Is she married? Decisions such as that will affect her spouse as well. 

I am mad for everyone involved (including poor stunted ss) - except your husband, of course. 

Is he a narcissist?

Your husband is actually compounding his son's disability by not allowing him to develop. He needs stimulation, he needs company, he needs a life ... and he's not going to get that by sitting at home and twiddling his thumbs/watching TV. 

Seriously, your husband needs to actually research these homes - we are no longer in the 19th century. Where I live (and I imagine in most countries), they are staffed by highly qualified personnel who chose to study for and do this type of work. There are all sorts of activities organized (sports, theatre, etc.) and the people living there are being stimulated all day with down time happening only after 4.30 pm.  Really, your husband needs to educate himself. Also, in this world of social media, if there's a not-so-good place, it's fairly easy to find out. 

My thoughts are that your husband is being purely selfish and only thinking of himself by keeping his son at home. He is not advocating for his son's well-being.

As for what happens to him after your husband dies ... why isn't he working on a real solution for him? Has he ever contacted anyone about help and information on the subject? Maybe https://www.ds-int.org/ or https://ndss.org/ for a starting point?

My daughter has a sister too - they are twins. We have made it clear forever that she is not and will not be responsible for her sister. She has her own life to live (she's turning out to be a bit of a globe-trotter!). This is why we are doing all we can to make sure they are both happy, and lead the lives they want to. It is vital for both of them. So now we are waiting for a place in the "foyer" (there are not nearly enough of them) that my daughter prefers of the two she is currently testing (and therein lies the proble, they are two very different places and she loves both of them!).

Enough of my lecturing ...

I know I'm a bit late to the game but  Ihad to chime in. I am a social worker in the developmental disabilities field and I see this more often than need be. Parents keep their "disabled" children at home well into adulthood, they keep them "safe," they don't get them involved in programs that could help them grow and develop and be happy. Then something happens to the parents. They age, they get sick, they go into nursing homes, what have you. And that family member that was "supposed" to take i nthe disabled child? They can't. Or they won't. 

What happend then? The state steps in. The disabled adult is placed in a home- any home- on an emergency basis. It's supposed to be temporary until a more appropraite placement is found but in most states, these homesa are few and far between and the waiting lists extend YEARS. Suddenly, the disabled individual is thrust from their home, their, family, into a strange environment. They act out. And can you blame them? 

Your husband NEEDS to get his ducks in a row for his son now. This young man is 22- he's at the age where everyone, disabled or not, wants to be independent, make friends, get involved in activities, and learn meaningful skills whether they be work skills, volunterring, or just helping to take care of one's home. I know you say your DH won't budge, but maybe you can present him with research and facts? Reach out to a local community agency that oversees these group homes and talk ot someone, have them take you on a tour of various homes and programs. It will probably be eye-opening. Services have come a long, long way from the days of institutions! And because it can take years, he needs to get your SS certified/eligible for services and on wait lists for day programs and alternate living arrangements. 

I've seen so many people BLOSSOM by making friends, learning independence, getting a job i ntheir community and making their own money, and your SS deserves that too! 

Is there abuse in some of these places? Yes, it's in any congregate setting- schools, daycares, even churches. But it's not nearly as rampant as we're led to believe. It's the bad news that gets reported, not the good news. And the good news is, there are some highly compassionate, dedicated professionals in the field whose mission is to truly help people be their best. And services are more family-oriented than ever. Living in a group home doesn't mean your SS can't come home every weekend if that what you and your husband want, and on holidays, and whenever. In fact, family connections are encouraged!

I hope your husband can get some clarity. If he really loves his son, and I know he does, it's obvious, he'll help him to live the best possible life he can. 

Blessings to all of you. You sound like such a kind and genuine SM and person!  <3

The more he can do, the better situation/ home that will take him.  His daughter might have trouble finding a place.  If anyone needs to speak up it's her.  She needs to put the fear of God in DH that SS will end up in a dump because of the lack of life skills.  

When DH gets to old to take care of his DS.  Or has his own health issues.  This kid will have to go into a group home.  Since this is what's going to happen in the future.  Do it now.  Get SS in a group home,  you live your life now 

My GM had Multiple Infarctic Dimentia.  When my GrandDad died my dad set up an agreement with his cousin and the cousin's wife that GM could stay in her home. THe cousin and his wife, who was a registered elder care provider, moved in with my GM. The agreement was that if GM could remain in her own home until full residential facility care was required dad would give the home/property (15acres) to the cousin.

That did not work out. The wife basically did shit for nothing for my GM. So, we brought GM to our location, dad sold the house/property to the cousin.

GM went into a very nice small residential care home.  It was designed for 6 residents with a 24/7 care giver.  It was nice for about 6mos then we got a call from the owner. We had a few days to get my GM a new residence. The facility had been sued for labor violations. The residential care providers stayed on site. They had their own room.  They sued to be paid 24/7 while on site instead of 4/10s one week and 3/10s the next week.  To eleminate any risk, the owners shut it down.

My GM was very stoic. My memories of her were of a statuesque very proper lady who would read almost constantly, watch her "shows", loved her dogs, and she and GrandDad had a routine that they lived together seemingly happily.

Then we found Sterling House. A full service lock in facility, that was basically a cruise ship in a parking lot. My GM blossomed in that environment. They had social events regularly, each resident had an "apartment", there was a beauty shop, a "restaurant", gardening boxes, a house dog, a house cat, movie night, dances, beauty pagents, church services, music and theater performers would volunteer to do shows, the local HS had a volunteer program for students to visit, read, etc, etc, etc...

It was remarkably reasonably priced. Her monthly Social Security and Medicare/retirement medical insurance covered most of it. The remaining investment resources was enough to cover the remainder of the monthly costs at that facility. We invested and managed her funds to keep her in that facility for the remainder of her life.  It was an age in place facility providing end of life care as the retirees came to the end.  We could have kept her there with her assets in addition to her SSI/etc... benefits for ~15 years.  She ended up being there for nearly 6. She passed just short of her 85th B-day. Our whole family has great memories of my GrandGranny, her life there, and our regular visits with her and her visits with us for the Holidays.

At her final resicence, my stoic GM turned into a vibrant, beamingly happy, active social butterfly. She won Miss Congeniality in the pageant one year, she was a dancing tornado at the parties, she would go for walks and visit her neighbors, stop in for coffee, they would visit her, a number of the residents would go on dates to the "restaurant" and the movie "theater". 

The facility was specifically designed for memory impaired residents.   Picture a squared off figure 8 configuration with apartments around the main hallways. Coded access and egrees doors to prevent wandering residents grom getting lost. They could wander and meander to their hearts content and always end up back at their own apartment or in the common areas.  The spaces in the center of both sections of the figure 8 were where the gardening boxes were for the residents, where there were out door bistro tables that residents could read, have drinks and snacks,, and where the climate controlled dog and cat rooms opened to the out doors. The pets each had a visiting room where residents could go in to play with and love on the dog or cat.

The moral of the story, regarless of how much love and care a person  requiring care may have in their home, and how comfortable and nice the home and family my provide, it may not be the place that is the best for the family member requiring care. The right place can be a major game changer for their quality fo life and give their loved ones a huge improvment in peace of mind.  My DW and I live away from both of our families.  That my brother and my niece live near my aging parents and they are able to continue to live their best lives as they progress through their retirement is a huge relief for me and to my DW. 

That my MIL lives very near my BIL1 and his family, BIL2 and his family, and SIL and her family, as well as to my wife's aunt (MIL's sister), is a huge relief to my wife and to me.

Caring for a family member who needs care has to be a balance between the quality of life for the one needing care, and the quality of life for those family members providing that care.

DH needs to not only keep his special needs son's needs in mind, he has to take care of himself, and of you.

Hi twhite19, how are you and how are you coping? I feel for you because I have a kind of similar situation with my ss21, but nowhere the amount of care you put in..I hope you are okay