Inheriting Care of Special Needs Sibling...

[JumpyTheFrog]

My DH has an older brother (BIL) who is special needs and has depression, anxiety, etc. issues. We aren't even sure what his original diagnosis is because MIL is a little vague about it all. I think it is some sort of brain damage he was born with. Anyway, BIL is on four drugs to try to keep his mood stable, but he has been getting worse the last year. He also has Hashimoto's and several other conditions. I worry about getting stuck caring for him when MIL dies. She's in her late 60s, so she hopefully has another 15+ years left, but if something happens, I don't think FIL is up for the job of caring for BIL.

DH tries not to think about getting stuck caring for BIL someday. I worry that we'll end up feeling trapped for decades and unable to travel to visit future grandkids, etc. BIL doesn't adjust to things easily, so we wouldn't be able to have any sort of adventures with him living with us. For example, on Easter he was starting to get stressed out about which spot at the table was for which person. There were only seven of us, so it wasn't a big deal.

Has anyone here ended up with caring for special needs siblings once their parents or in-laws died? 

[fairfarmhand]

YOu know it is possible to be in charge of managing his care without necessarily providing the day to day hands on care. He may need a group home or some other sort of setting to provide for him.

This is a conversation for your dh to have with his parents so he can be very clear about what you and your dh are capable of handling. Your in-laws may make assumptions about you guys or they may already have a plan in place. But until the conversation happens, you won't know. 

[Ottakee]

It sounds like an adult foster care/group home situation might be best for him.

Does MIL have guardianship over him?  Does he have disability?  Community Mental Health services?  Etc?

Depending on his situation and if there is anything to inherit, MIL might want to create a special needs trust for him so that he can continue to get his benefits.  

 

[Scarlett]

1 minute ago, fairfarmhand said:

YOu know it is possible to be in charge of managing his care without necessarily providing the day to day hands on care. He may need a group home or some other sort of setting to provide for him.

This is a conversation for your dh to have with his parents so he can be very clear about what you and your dh are capable of handling. Your in-laws may make assumptions about you guys or they may already have a plan in place. But until the conversation happens, you won't know. 

This is pretty much exactly what I was going to say. 

[fairfarmhand]

OH, and you ARE Allowed to decline this responsibility. Doesn't make you a bad person.

 But you do need to let your in laws know that so that they can figure out another plan.

[JumpyTheFrog]

20 minutes ago, Ottakee said:

It sounds like an adult foster care/group home situation might be best for him.

Does MIL have guardianship over him?  Does he have disability?  Community Mental Health services?  Etc?

Yes, they have guardianship over him because he is legally disabled. He has lived at home his entire life. The last I knew, MIL's (older) brother was listed in their will as the new guardian should something happen to her and FIL. DH is listed as the back-up guardian. MIL has talked about changing that because she can see that her brother wouldn't be up for the job anymore due to his age and declining health.

 

[Lecka]

We have a similar situation, but it is my only-child cousin.  

My aunt and uncle have been somewhat pro-active.  

One thing is that for years they were sure he wouldn't qualify for Social Security -- well, it turns out he does qualify.  And then that means he qualifies for other things, too.  

At this point we think that my two sisters and I will be involved, but that he will have structure outside of us, too.  

It sounds like your BIL does receive mental health care.  He might have a diagnosis, and he might qualify for Social Security if they applied.  I think it is something they might ask the mental health provider.  

Ideally they would be more proactive if your husband does bring it up.

Otherwise I think there will still be options over time, but you guys might be starting from square one in an emergency situation.  

You also could decline, and that really is an option.  I don't know if it would bump him up for services, but it might.  

There are also major financial planning needs because if there is a life insurance policy or something, and it is not set up in a special needs trust, that could keep him from accessing services.  

Good luck!  I think if you don't know of another plan for this brother, it is probably true that you guys are the default plan, and also that your ILs are not interested in being more proactive.  But hopefully they are or are willing to be more proactive.  I think your husband mentioning it to them is a first step!  

 

[Lecka]

Just now, JumpyTheFrog said:

es, they have guardianship over him because he is legally disabled.

This is good in the sense that there is already a lot done, compared to it not having been done.

I think if you bring up that you need another plan, maybe he could get on a waiting list for a group home or supportive living.  

He might have a case manager, and your parents might be able to give you permission to speak to the case manager -- if they need some help at this point in their lives.  

I have heard that it depends on what state you live in, and maybe you live in a better state, but often it is beneficial for someone to stay in their state because they have already been on the waiting list and would start over with another waiting list if they moved.  I think this just depends, but -- I have heard it.  

[Lecka]

It's possible your parents are doing some things but not others -- but it sounds like if there are things they aren't doing, things are in place to start doing them.  Like -- if they don't have a case manager, maybe they haven't wanted to be part of state programs before, but maybe they would have the paperwork they needed, already, to apply for that.  

It's a lot better than not having that paperwork.  

 

[Ali in OR]

For our own dd, we have legal guardianship, and I hope that when we're gone if dd is still alive that one of her sisters will be the legal guardian. But the legal guardian is in charge of making sure she is cared for, not necessarily providing that care. I would not expect either of my other kids to carry that burden. So at some point, when her care gets too hard for us to manage, we will look at other living situations for our disabled dd--foster care or a group home. Then my other daughters would manage money aspects, be involved for health decisions, make sure her living situation is appropriate, but not provide the care.

[JumpyTheFrog]

16 minutes ago, Lecka said:

It sounds like your BIL does receive mental health care.  He might have a diagnosis, and he might qualify for Social Security if they applied.  I think it is something they might ask the mental health provider.  

...

Otherwise I think there will still be options over time, but you guys might be starting from square one in an emergency situation.  

He does receive Social Security and is eligible for some special services (such as part-time work) in their main state. In the last year they bought a townhouse near us to spend part of the year here and part of the year there. The assumption is that their main state has more services than our state. It is probably true, although we've never looked into it.

13 minutes ago, Lecka said:

I think if you bring up that you need another plan, maybe he could get on a waiting list for a group home or supportive living.  

He might have a case manager, and your parents might be able to give you permission to speak to the case manager -- if they need some help at this point in their lives.  

I've never heard them talk about a case manager. Is that usually a social worker? I'll ask her if he has one. I don't know if anyone is coordinating care as far as the special needs side. I do know that MIL is frustrated at the fragmentation of his medical care and says there is no one person with the big picture of all his problems.

When I first met DH in college, his brother was talking about maybe moving out to a supportive apartment or group home or something when he was 30. I don't know what happened with that idea. Maybe BIL lost interest or maybe it wasn't going to work out. To me it feels like MIL, FIL, and DH are ignoring the inevitable issue. (This sounds really horrible, but it seems that DH is hoping that he'll luck out and somehow MIL will outlive his brother and it won't become our problem. That seems incredibly unlikely.)

[JumpyTheFrog]

Sometimes I find myself thinking, "We better go visit all the countries and places in the next ten years. After that, we may be stuck being caregivers."

I know group homes could be an option, but I don't think DH could actually stick his brother in one. Or, at the least, I'm not sure I'd feel right about it. How do you find one where the residents aren't being abused by the staff or each other?

I think I need to convince DH to have a talk with MIL. They need to get us in on the loop in case of an  emergency. I have no idea if FIL is even capable of stepping up if something happens to MIL. 

[fairfarmhand]

2 minutes ago, JumpyTheFrog said:

He does receive Social Security and is eligible for some special services (such as part-time work) in their main state. In the last year they bought a townhouse near us to spend part of the year here and part of the year there. The assumption is that their main state has more services than our state. It is probably true, although we've never looked into it.

I've never heard them talk about a case manager. Is that usually a social worker? I'll ask her if he has one. I don't know if anyone is coordinating care as far as the special needs side. I do know that MIL is frustrated at the fragmentation of his medical care and says there is no one person with the big picture of all his problems.

When I first met DH in college, his brother was talking about maybe moving out to a supportive apartment or group home or something when he was 30. I don't know what happened with that idea. Maybe BIL lost interest or maybe it wasn't going to work out. To me it feels like MIL, FIL, and DH are ignoring the inevitable issue. (This sounds really horrible, but it seems that DH is hoping that he'll luck out and somehow MIL will outlive his brother and it won't become our problem. That seems incredibly unlikely.)

Does your DH think that he will be in charge of day to day care? Is he having a hard time actually sorting through the feelings that he's "let someone down" if he doesn't have the BIL actually IN your home? Perhaps he's never thought of the fact that he doesn't HAVE to do day to day care and can simply be an administrator. It's funny the assumptions that one can make without thinking things through.

[JumpyTheFrog]

4 minutes ago, fairfarmhand said:

Does your DH think that he will be in charge of day to day care? Is he having a hard time actually sorting through the feelings that he's "let someone down" if he doesn't have the BIL actually IN your home? Perhaps he's never thought of the fact that he doesn't HAVE to do day to day care and can simply be an administrator. It's funny the assumptions that one can make without thinking things through.

I don't know if he thinks about it much. I am picturing me getting stuck with most of the work.

ETA: I have a tendency to see myself as the responsible one who will get stuck with the work. My own brother and SIL have some issues of their own, and sometimes I am concerned that if they ever have a child like they plan, that I might get stuck raising my niece or nephew if it totally overwhelms them. Also, my dad is not administrative and if he outlives my mom (unlikely), I see myself as being stuck trying to help him pay all the bills, clean out a house (they own two), etc.

Edited April 6, 2021 by JumpyTheFrog

[DoraBora]

Agreeing with others here that your DH needs to talk to his mom about this.  Like now.  I think you should also be there with DH, both for moral support and also so you know what has been discussed.  If DH won't bring it up when y'all are together, can you do it?

This is unlikely to be a single discussion and it may take several tries to get the ball rolling.  The situation is so similar to talks with parents about their wishes for their elder years.  Many people simply don't want to talk about it, but doing so now is so much better than waiting until a crisis occurs and you're caught somewhat flat-footed, trying to figure out how to proceed.

[DoraBora]

2 minutes ago, JumpyTheFrog said:

I don't know if he thinks about it much. I am picturing me getting stuck with most of the work.

Yep.

[fairfarmhand]

6 minutes ago, JumpyTheFrog said:

I don't know if he thinks about it much. I am picturing me getting stuck with most of the work.

ETA: I have a tendency to see myself as the responsible one who will get stuck with the work. My own brother and SIL have some issues of their own, and sometimes I am concerned that if they ever have a child like they plan, that I might get stuck raising my niece or nephew if it totally overwhelms them. Also, my dad is not administrative and if he outlives my mom (unlikely), I see myself as being stuck trying to help him pay all the bills, clean out a house (they own two), etc.

You are allowed to say, "I am willing to do x, y, z. I am not willing to do a, b, and c." 

It sounds like you're the one on the hook for elder care in your own family of origin, so it seems unfair for someone to ask you to take this. If your dh doesn't want to or can't then you both need to say so. This is not a time for anyone to practice wishful thinking.

Have you told your dh out right "It doesn't make you a bad uncaring person to not be able to have your BIL in our house. We can still provide for him in other ways."

[Lecka]

11 minutes ago, JumpyTheFrog said:

I know group homes could be an option, but I don't think DH could actually stick his brother in one. Or, at the least, I'm not sure I'd feel right about it. How do you find one where the residents aren't being abused by the staff or each other?

I have been into group homes because my former church (we moved) went to sing Christmas carols at several, and a man from my church had Down Syndrome and came to church in a van.  We sat with him during the church service.  

My son also was in Special Olympics one season (he would not qualify now, but it was wonderful the season he did it -- track and field).  In that way I was around many people living in group homes and the people who brought them to Special Olympics.  

My impressions are good!  I would want to "keep tabs on things," but it is hardly an automatic negative to me!!!!!

Especially when you know they have things they do and people to be around, when it seems like those are real positives -- which I think can depend, but definitely I think there are many times people are happier and have more social interaction with people they enjoy being around, when they are in a group home.  I think it can be that way, though I think it depends a lot, too.  

[Lecka]

I also have known many people who have worked at a group home when they were younger, and they were all nice people.  When I was in college, I knew several people who worked the night shift, and would make supper when they got to work and hang around with the clients.  They were totally nice people and said kind things about the people they worked with.  

[Lecka]

I think your BIL sounds like someone who would be at lower risk of abuse because it sounds like he is verbal and wouldn't need help with bathing or getting dressed etc.  I think honestly -- it should still be a concern and something to confront head on as something that needs to be seen as something to keep tabs on, but -- in the scheme of things, he doesn't sound like he is at the highest risk of abuse, if that makes sense.  

I think education for BIL about what is okay and what he should do, knowing policies, asking questions to show you have your eyes open, etc, are all things that are good kinds of things to do.  

[Lecka]

He could be less protected/sheltered in some ways, like -- it is a known thing, some people have the opportunity to date or get in relationships, who totally did not have that opportunity when they lived at home, and that can mean education is needed, too, and it is also just -- something that might be a new thing in a big way.  

[catz]

I know several families who have had great experiences transitioning a disabled adult to a group home living situation FWIW.  Their young adults got experiences and interactions and developed skills they absolutely would not have had living at home with aging adults.  You obviously need to do your homework, but I don't think these places are uniformly awful at all.  

I think you need to have a frank talk with your husband about your boundaries.  You can say no.  It is still a lot of work to be emotionally and financially taking care of a disabled adult without taking on their full time hands on care.  I then think you move to the frank discussion with the ILs about their planning.  I wouldn't just let tons of time pass without knowing if there are any plans in place.  If a group home situation seems viable, it may be better for him to try and transition while he can still visit his parents regularly and not during a really stressful time.  

[Spryte]

You’ve already gotten such good advice, I just want to add one thing that may have been mentioned - but perhaps not.  When you discuss this with the ILs, don’t forget to talk about their own care.  I have seen some parents of special needs kids so focused on the adult kid care that they sort of forgot to make a plan for their own.  There may come a time when they not only can’t care for adult kid, but need help themselves - and this will likely happen simultaneously.  They might have a plan in place already, but it would help you and Dh to know what it is.

[frogger]

I would definitely try to open the conversation. I'm struggling with that with my older BIL since my MIL dislikes me but my husband doesn't know how to have real conversations about all that. It isn't as simple as he would just move here. His home is on an adjacent property with theirs with attached water and electric. 🙄  Dealing with selling that will be a nightmare. I think in laws assumed we would move into their home to take care of BIL. Oy He has a job and life there too and couldn't live on his own but I can't butt in due to my non-existent relationship with in laws.

My little brother has Down Syndrome but my step mom has been very good about his paperwork and he is mostly living on his own within walking distance to his work no less. This is good because uprooting him to live with us would be terrible for his social life, career (even if he just bags groceries), and living independent also makes him feel better about himself. He has someone come in once a week and help with meal prep etc. Of course, there is constant vigilance with the computer and scammers and having to do all his paperwork (I'd actually prefer to do daily life then paperwork and tracker ng budgets) . 

There is a lot to services, health care, and even financial paperwork. There are laws to make sure you aren't taking advantage of your family member. It is more of a pain to the family though even if I would like to somehow make sure that those with disabilities aren't abused or taken advantage of. I really wish I could have these conversations with the in laws. 

You should certainly bring up alternatives with your husband though. In all honesty, what is available to you really depends on where you live. 

 

 

 

 

 

 

 

 

 

[Miss Tick]

I'm very close to a couple that went through this 10ish years ago. Parents were insistent that disabled brother, "Frank", not go to a group home. When the parents moved to an assisted living home a few options were tried. First, the other three brothers rotated him from house to house a season at a time. It was hard and Frank began to have some additional medical issues during that time due to age. After a year or two of that, Frank moved in full-time with oldest brother, Roger. Roger's wife was never confident this was a good idea, and after a few years they came close to divorcing. Roger moved Frank in to an adult home and it worked out really well. They picked one close enough that Roger could visit every day,  which he did. I think by that time the parents had both passed away. If Roger went out of town to visit family, he arranged for other people from their church to visit Frank.

[Farrar]

The worst outcome would be if something happened suddenly and everyone was scrambling. The best outcomes rarely emerge from that situation. The best outcomes also don't emerge when the backup plan is something the people involved don't actually want or aren't willing to live with long term. The more lead time you have, the better the options would be for the right group home placement if you end up considering that route as one possibility.

It sounds like you're doing all the right thinking and like you almost certainly have a few years before this becomes a real issue. It's just time to open up the conversation, like everyone is saying.

[ktgrok]

If conversations about this are hard, I think my approach would be to do as much research as I could on my own first - that way I can minimize how many "what ifs" get the conversation off track, and also perhaps limit the number of times it gets discussed. 

So both having a list of things to ask inlaws - acual diagnosis, medical needs, qualifications for various services, etc etc as well as coming prepared with information on group homes in your area vs theirs, other options, etc. 

[Innisfree]

38 minutes ago, FuzzyCatz said:

If a group home situation seems viable, it may be better for him to try and transition while he can still visit his parents regularly and not during a really stressful time.  

This.

Group homes aren't necessarily a bad option. I think they could be far better than living with family members who, understandably enough, feel overburdened by the situation. On the simplest level, multiple staffers mean that no one is responsible day and night, seven days a week. It's easy to get burned out when you're doing all the caregiving, and then dealing with occasionally challenging behaviors just when you're exhausted and want to be done. Better if a fresh person arrives on schedule, rested and ready to cope.

I have watched the "transition after parents die" scenario, for an older adult with no diagnosis, and it wasn't pretty. That is not the time to face such a big transition.

If you could start the conversation with your dh, and he could do the same with his parents, I would emphasize how much kinder it would be to his brother to make the transition sooner, while his parents can support him through it. That way it can be a positive experience, an acknowledgement that the brother is ready for a new adventure, rather than a loss of his home at the same time that he has lost a parent.

[sassenach]

1 hour ago, JumpyTheFrog said:

Sometimes I find myself thinking, "We better go visit all the countries and places in the next ten years. After that, we may be stuck being caregivers."

I know group homes could be an option, but I don't think DH could actually stick his brother in one. Or, at the least, I'm not sure I'd feel right about it. How do you find one where the residents aren't being abused by the staff or each other?

I think I need to convince DH to have a talk with MIL. They need to get us in on the loop in case of an  emergency. I have no idea if FIL is even capable of stepping up if something happens to MIL. 

Group homes can actually be a very good experience for mild and moderately disabled adults. It sounds like he would be capable of communicating anything abusive. 

Your remark about getting stuck with the bulk of the work- this is me with my FIL right now. I don't blame you for anticipating that. 

[Mrs Tiggywinkle]

I have a sister with high functioning autism and cerebral palsy. She’s late 20s, never lived on her own, never held a job, doesn’t drive due to really poor response skills.  She was homeschooled but received services through the local school district that totally bombed transition planning.  She should have had adult services, supportive vocational training and probably supportive living.  The school kept saying she’d be fine in college and didn’t need further help.  She has an associate’s degree in business but is so awkward she won’t be able to hold a job. My mom hasn’t worked since the early 80s and is very out of touch; she doesn’t get that people aren’t going to hire my socially awkward 28 year old never working sister just because she has an associate’s degree.   In her day, a degree opened all kinds of doors. I also can’t convince her that people aren’t necessarily going to be nice to my sister.  She really needs vocational support.

My words fall on deaf ears.  I’ve tried talking to them about social supports, social security, special needs trusts, all of it.  My parents are mid-60s and any kind of special needs is a huge stigma.  They can’t imagine why  anyone would want a diagnosis or supports unless absolutely necessary.  They’re also wealthy, and I see this becoming a huge problem.  Their plan was always that she’d just live with a sister on their passing. They’re from a time and place where people care for their own in their own homes and outside services or assisted living/nursing homes are looked at with suspicion.  They come from a small town where people lived their whole lives, and it’s really difficult for my mom that six of her kids don’t live even within driving distance.  She literally believed that we’d all stay close and provide socialization for my sister, but everyone moved away except me.  And I don’t socialize and won’t be in any capacity to care for my sister—who has both autism and EDS.   I also have EDS, more severe than my sister, and autism. As well as two SN kids. My mom is always asking me to take my sister places and do things with her, as my youngest sisters(who are closer in age to this sister) used to always include her with their friends and activities before moving away.  I finally had to break it to my mom that I have neither friends or activities, and socializing isn’t my thing(thank you autism).  It was the first time my mom had confronted at all that I am the only one who lives close by and I will not be an appropriate caregiver.

I am a little mad about all of it, TBH.  It’s going to be a huge disaster because my mom especially still wants to live in her fantasy of her elder years where all of her kids lived close and helped her and my sister out.  It’s not going to happen, even if that’s what she and her sister did and generations before them.  

 

Edited April 6, 2021 by Mrs Tiggywinkle

[JumpyTheFrog]

1 hour ago, Lecka said:

I think your BIL sounds like someone who would be at lower risk of abuse because it sounds like he is verbal and wouldn't need help with bathing or getting dressed etc. 

Yes, he's verbal and can bathe himself, read at about a 2nd or 3rd grade level, reheat food, and clean. Real cooking, handling money, etc. are beyond his abilities. He's done Special Olympics for a few sports, but I don't think he's made any real friends there, maybe because most of them have been more intellectually disabled than him.

[Lecka]

I want to say a little more my impression of group homes I have been — as shallow as it is going to be, as I haven’t been in them much or anything. 
 

They have seemed warm.  It has seemed like the people mostly really got along with each other with some people who were maybe very quiet and maybe didn’t seem to actively participate (if that makes sense).  But even they would seem generally happy and like they had a routine.

It would seem like — something where in the living room, everyone had their favorite seat and their certain seat they sat in.

It would seem like there might be a mix of ages, and the younger people might seem more involved with the person working and doing more to help out.  The older people seemed like they might spend more time sitting on the couch watching tv.  The main person we knew from church was in his 60s I think and it seemed like — he could sit and watch tv more, while younger guys would be the ones to take out the trash or help set the table.

At Special Olympics, I thought for the most part they seemed like chummy groups (with some people who seemed very quiet but happy to be there).  They seemed to be seeing long-time friends at Special Olympics.  We would park in the parking lot with all the vans from group homes and I felt like — they didn’t necessarily see me — and I felt like the people driving were talking nicely and not for an audience.  
 

I also would see people I recognized on outings to the mall and I was happy with what I saw there, too.

 

I think it all depends on so many things, and personalities can make a huge difference.

 

But just to say — more specifically things that have made me have a generally good impression.  

[Tanaqui]

It wouldn't be fair for your husband to ask you to take over his brother's care mostly single-handedly, and honestly, it's not fair for him to implicitly ask you to do all the worrying and planning about this now. You need to speak with him honestly and remind him that whether he thinks about the future or not, it's thinking about him. If you don't make the plans now then one day you'll both look around and realize the future snuck up on you and became the present, and then what will you do?

Nobody likes thinking about the future and planning for things like the care of a fragile elder or a disabled sibling! But the situation doesn't get any better by ignoring it.

[Dmmetler]

My BIL had multiple diasabilities including a profound intellectual disability. When his mother was alive, the "best" social services could do was to provide a limited number of hours of support services and respite care, and stated it was either that or a state hospital. Once she died, and both siblings stated that they were unable to provide the care needed (we were all young adults, not living in the same area, and either working full time, had young children, or both), suddenly a good group home situation became available. 

[Ottakee]

Depending on where they live there are many group home options with various levels of care.

Could the in-laws arrange for a caregiver to rent the main house at a big discount in exchange for some care of BIL?  I have a friend that has cared for a special needs man for the last 25 years.    My friend and his wife and 2 kids live in a condo with the gentleman.

I agree, the time is now to work to figure it all out     there are also programs calls home help that can bring in caregivers that can help with laundry, cooking, cleaning, shopping, etc.....all paid for through disability funds through DHHS.

[Lecka]

If he didn’t mind going to Special Olympics, it’s possible that other people already knew each other from day programs, group homes, etc.

Some people are also less social and could make friends (or have a bit of a group even if they were pretty quiet) if they were — going with a group, getting encouragement, etc.  That kind of thing can make a big difference.

If he didn’t like it that is different.  But he could have needed more help to be more part of things or he could have an easier time if he was part of a group.

I think it is one thing to think — someone had a nice time.

And then another thing to think — they made a friend.

I think there is a lot of room for something to be positive and a nice time, but not lead to making friends.  
 

And some people will be seeing each other other times in the week, coming and going together, etc, so naturally they will have an “in” your BIL wouldn’t have if he’s just showing up.  
 

I have also seen relatively higher-functioning people (especially socially) at Special Olympics take a bit of a leadership/helper role, even while also participating themselves.  They might cheer on other people or say “come on” to people when they changed events.  

[Pen]

3 hours ago, JumpyTheFrog said:

Yes, they have guardianship over him because he is legally disabled. He has lived at home his entire life. The last I knew, MIL's (older) brother was listed in their will as the new guardian should something happen to her and FIL. DH is listed as the back-up guardian. MIL has talked about changing that because she can see that her brother wouldn't be up for the job anymore due to his age and declining health.

 

 Guardian does not necessarily mean daily care. Legal guardian could find a group home,  deal with finances, look in to visit and to make sure that care is adequate. 
 

Does sound like a conversation is needed as well as investigation of options

[JFSinIL]

He needs to be on a wait list for services including a group home, you can be guardians or let the agency that runs the homes guardian - but the time is now to get him on wait lists for services.  What state is he in?  Don't wait until folks are too old to care for him to make this happen.  It can take years.

 

He should not have to live with anyone worried about being "stuck" with him, btw (I have a 29 year old in a group home past 5 years now...daily life before he was granted funding and we found a good fit revolved around his needs etc. and it is a drain day in and day out). 

Good luck!

[DeainUSA]

Personally, I wouldn't want to leave guardianship to anyone that feels how you do or uses the words "stuck with".  Have the conversation.  Make  your husband have the conversation.  At least both of you do that for his brother. He may have to be assigned a guardian, when that time comes.  Not everyone has someone.  

[HS Mom in NC]

9 hours ago, Farrar said:

The worst outcome would be if something happened suddenly and everyone was scrambling. The best outcomes rarely emerge from that situation. The best outcomes also don't emerge when the backup plan is something the people involved don't actually want or aren't willing to live with long term. The more lead time you have, the better the options would be for the right group home placement if you end up considering that route as one possibility.

This is so so so true.  Anytime you're dealing with adult dependents you have to stay ahead of things. Crisis management is the worst scenario and it's an absolute tragedy when some of it could've been avoided by planning for the inevitable.

[DawnM]

I have had this conversation with my kids about my special needs son.   We are still hoping he can find a way to support himself.   

I told DH we MUST get a trust set up for him by the end of the summer.   And we are now looking at applying for disability for him.  Isn't there also a lawyer we can hire if we get denied?   We haven't delved into it a whole lot yet.

Is there a way you could hire someone to come into your home to help, esp while you travel?

[mlktwins]

As someone who has been providing A LOT OF/MOST OF THE care for my elderly father for the past 2 years and is now in crisis mode with 94 year old in-laws that wanted to stay in their home (and I mean crisis mode), I will have nothing left in my tank for caring for anybody else after this.  It is life changing.  I worry about my older sister who lives alone and my older SIL who lives alone, but I honestly can't even think about providing care like this for anyone else (except for DH and my boys).  I just about have nothing left.  At this point, I will finish raising my boys (2 years to college) and start taking care of myself so I'm here to be a doting grandmother :-).  We've given up travel for now because I couldn't leave my dad before (I could now for a week or so except there is Covid).  DH has not wanted to be away in case something happened with his parents.  I would like to get one more wonderful trip in with DH and my boys before they start college and it gets harder to plan.

I agree with the previous poster who said to talk about these things now.  Both about your in-laws plans for their aging and your BIL.  On the aging end of it, they do not want to end up like what we are dealing with because NO plans were in place!!!  Nightmare.  And people may call it selfish, but at some point, I want DH and I to find some time to enjoy what is left of our lives.  Caregiving is very hard on your health (mentally and physically) and on relationships.

ETA:  I love my dad and in-laws.  We are doing what is needed for them.  I just really want people to know they should have these hard conversations early -- before it is too late!!!  I had to force my dad to move, but he ended up loving it and he is in a better place should a crisis arise.  We should have forced my in-laws into assisted living several years ago so they could age in place gracefully.  They weren't having that and now it is too late.  Just please have these conversations!

Edited April 7, 2021 by mlktwins

[kristin0713]

The best thing for your BIL would be to transition him while his parents are still alive.  The reality is that that will NOT always be here. It will be much smoother for everyone if he can get settled where he will spend the rest of his life well before his parents are gone.  There are options other than a group home, but a group home can be a fine option, too.  When we lived in a townhouse, there were two women who lived across the street from us that had disabilities of some sort.  They were picked up by the LINK bus everyday and brought back.  Someone periodically checked on them.  They seemed to do fine as roommates but were clearly very delayed. 

You need to have a talk with your DH and then a talk with the ILs. Doing it now will give them plenty of time to find the right place.  Otherwise, yes, you will probably end up stuck with him if your DH is unwilling to make other arrangements. 

[JumpyTheFrog]

On 4/6/2021 at 2:54 PM, JFSinIL said:

He needs to be on a wait list for services including a group home, you can be guardians or let the agency that runs the homes guardian - but the time is now to get him on wait lists for services.  What state is he in? 

Part of the problem is that my in-laws just bought a townhouse in our state. So they will be in their state of official residency for a little over half the year and here for the rest of it. I am assuming that means BIL would only be eligible in their state, but a waiting list for a state we never want to move back to wouldn't be very helpful.

 

On 4/7/2021 at 7:19 AM, DawnM said:

Is there a way you could hire someone to come into your home to help, esp while you travel?

This could work. One idea would be to buy a house with an in-law apartment and then hire someone to help when we want to go away. I think having him in the same house without a separation might not work because then we'd always have to be worried about overwhelming him when we have guests or future grandchildren over. Having his aunts and uncles over for holidays stresses him out, so dealing with non-family would be really difficult for him.

 

On 4/7/2021 at 8:28 AM, kristin0713 said:

You need to have a talk with your DH and then a talk with the ILs. Doing it now will give them plenty of time to find the right place.  Otherwise, yes, you will probably end up stuck with him if your DH is unwilling to make other arrangements. 

 

I tried to talk to DH about it a few days ago. He stated that he thinks BIL is unlikely to outlive their parents and then tried to change the subject. I pointed out that despite BIL's health problems, there is nothing to indicate he would have a shortened life span. He thinks his mom doesn't want to talk about it, citing her vague words about BIL's diagnosis when we've tried to ask in the past. DH seems unlikely to have the needed conversations, although he did find out that his dad is less uninvolved than we thought.

Overall, it seems that I am the only one trying to be proactive here. DH is trying to poo-poo (spelling?) my attempts to follow my nature and start long-term planning.

Edited April 14, 2021 by JumpyTheFrog

[hippymamato3]

I'm sure your state isn't as bad as ours, but there is not enough housing for disabled people and sometimes homeless shelters become a waiting area for months or years until a space is available. It is pitiful. Getting him on a list NOW might be in everyone's best interests. 

Edited April 14, 2021 by hippymamato3

[Scarlett]

3 hours ago, JumpyTheFrog said:

Part of the problem is that my in-laws just bought a townhouse in our state. So they will be in their state of official residency for a little over half the year and here for the rest of it. I am assuming that means BIL would only be eligible in their state, but a waiting list for a state we never want to move back to wouldn't be very helpful.

 

This could work. One idea would be to buy a house with an in-law apartment and then hire someone to help when we want to go away. I think having him in the same house without a separation might not work because then we'd always have to be worried about overwhelming him when we have guests or future grandchildren over. Having his aunts and uncles over for holidays stresses him out, so dealing with non-family would be really difficult for him.

 

 

I tried to talk to DH about it a few days ago. He stated that he thinks BIL is unlikely to outlive their parents and then tried to change the subject. I pointed out that despite BIL's health problems, there is nothing to indicate he would have a shortened life span. He thinks his mom doesn't want to talk about it, citing her vague words about BIL's diagnosis when we've tried to ask in the past. DH seems unlikely to have the needed conversations, although he did find out that his dad is less uninvolved than we thought.

Overall, it seems that I am the only one trying to be proactive here. DH is trying to poo-poo (spelling?) my attempts to follow my nature and start long-term planning.

Sorry no one is taking this seriously.  The best you can do is kindly tell your dh that you want to be proactive because you do not feel up to taking on responsibility for him living in your home if that time comes.

[katilac]

On 4/7/2021 at 6:19 AM, DawnM said:

And we are now looking at applying for disability for him.  Isn't there also a lawyer we can hire if we get denied?   

Yes, and there's a good chance that you will need one. It's pretty routine to get turned down the first time. 

[kristin0713]

7 hours ago, JumpyTheFrog said:

He stated that he thinks BIL is unlikely to outlive their parents and then tried to change the subject. I pointed out that despite BIL's health problems, there is nothing to indicate he would have a shortened life span.

Another scenario is that in another 10 years, all three of them will need care. It seems like everyone is just avoiding the inevitable. I’m sorry. I guess at the very least, I would want to come to an agreement with DH about what level of involvement you will have in the event that any of them needs a lot of help. 

[JumpyTheFrog]

14 hours ago, kristin0713 said:

Another scenario is that in another 10 years, all three of them will need care. It seems like everyone is just avoiding the inevitable. I’m sorry. I guess at the very least, I would want to come to an agreement with DH about what level of involvement you will have in the event that any of them needs a lot of help. 

My nightmare is that both sets of parents (plus BIL) need care at the same time, or that they all die within a year or two of each other. Each set of parents now has two houses, his dad has one workshop, and my dad has essentially three workshops plus business equipment. My dad thinks it would be hilarious for me to have to clean out so much stuff someday. (My brother probably wouldn't be very helpful.) At least I got my mom on board with organizing their financial papers, passwords, etc. to make being an executor easier. 

[katilac]

7 hours ago, JumpyTheFrog said:

My dad thinks it would be hilarious for me to have to clean out so much stuff someday.  

Have the last laugh and use an estate sale company.