My in-laws get into town today...

[3 ladybugs]

I don't have time to write right now, however they are leaving today. I will report back later today and tell you what we learned. 

[3 ladybugs]

Okay well they left but we had to do some things and there was several accidents in the area (not effecting our drive to the airport thankfully) so we just got home. 

 

They told us their plan is to not come out here for 7 years. FIL will retire in 2 year, then they would come out in about 7 years. It seems odd to me but that is what it is. They are planning on living in their own house in our town. They seem to think that they are going to be incapacitated at some point in the future. This strikes me as odd as my family was only like that when they were in hospice (exception would be a great grandfather with Alzheimers, and a grandmother who no one liked). Anyway, they are hoping that at that point we will move in with them to help care for them. To me that is planning for something that probably will not happen. However they did give us other options should we not want to do that. They are very worried about BIL and him being alone as he ages when they are gone. I guess he has said he will commit suicide. To me this is more of a reason for them to come out here sooner rather then later. We will have to see what happens in 2 years. 

 

They understand that my mom will likely live in our basement at some point. She said that is the reason she wants a 4 bedroom house so that we can all live in that together after they are gone (with BIL). DH didn't really want to be given the house that they move into because it could make things tricky for us as we could potentially own 3 houses (our house, a trailer, and their house) so it likely will go to BIL name. 

 

All told it didn't seem that bad. They were talking up BIL (we don't really know him because of the autism), and we have reservations about him, but this is something that MIGHT happen in 7 years. A lot can happen between now and then. 

 

There are a lot of things I find odd about the situation. Not the least of which is that they say they want to know their grandchildren yet they don't want to come out here till after my oldest is almost 15. I was able to stay away from most "trigger" topics, the only exception to that was homeschooling which I did blow up at them over when they told me we were not doing something we were doing, but don't pick those battles around them. (DS wasn't doing his schoolwork when he was told to do it. Big fit. I was told he ONLY did the fit because we don't follow through with making him do it. Which we do make him do it. DS started doing it before they started arguing with me over this.)

 

They said that the next step is to finalize everything so we would have to fly out there for that. They oddly think that I don't want to go out there (my father, grandmother, sisters, and a cousin whom I think of as a sister all live out there!). It is going be expensive to get us all out there and even though we homeschool, we are dependent on the german school my DS attends to have vacations. So that may not occur till next June. 

 

That is more or less all I know. 

[Jean in Newcastle]

Finalize what?  Is there going to be some kind of a contract? 

[bolt.]

It sounds like they have a fair plan.

 

Except for the idea that they are "giving you options" and you thinking you will "end up" owning the house -- both of which just sound oddly like you and DH are the passive participants instead of the primary decision makers here...

 

Well, it does sound like within those "options" you will be able to please yourself by simply choosing not to go with their primary preference at the time.

 

It sounds like they are aware that they can't (and shouldn't!) count on expecting your family (and your mother!) to move in when it becomes convenient to them. They may still imagine they could ask you to, but they are at least *aware* that it's not your intent to say yes.

 

Other than that, you seem up-to-date on their current thinking, perspectives, and worries. Info is good.

[bolt.]

Finalize what? Is there going to be some kind of a contract?

Oh, I missed that. What exactly do you need to fly out to do? (Most things (even contracts) can be finalized by fax or email quite easily.)

[Valley Girl]

Well, I'm really confused. It sounds as though they're still planning on having you live with them and that you will still be responsible for BIL. I hope things work out for you.

[3 ladybugs]

The end of life planner (don't remember his official title) needs at least DH to come out there to talk about all the stuff he needs to know about. He will have a job (I don't fully understand) that would be managing the estate as a whole. Much of the stuff would be in place but things like taxes and such. This he can hire out if he wants to, but I think that is stupid and told DH that much. DH also has rolls in things as the oldest son should a parent need something pertaining to the estate (example is if FIL was in a coma and MIL couldn't cope and things needed to be paid, dealt with, or arranged). They are planning out a TON of things. Hearing it all it was like they were dying tomorrow in some sort of cult or something. Maybe I am just not used to hearing about all of it. In the end, this aspect of things is good for everyone. 

 

BIL is sort of a moving target. When he comes out here he would go into the HUGE autism community we have here. He has never really had friends as he never saw the need, however I am wondering if he has never seen the need because no one he knows really "gets" him. MIL has said she just fears that he would be lonely. He is sort of to himself right now. So "lonely" is a relative term. I wonder if we just went over there every few days, that would likely be enough. Again the autism community may also help him with this as well. 

[Storygirl]

Hmm. I don't understand why your whole family would need to go out to finalize anything. That's not typical for financial planning. Your husband might ask for this planner's contact information and call him to make sure it is necessary for him to be at any meetings. I think the in-laws are just requesting it, but it shouldn't be required.

[Seasider]

FWIW, I wouldn't sign a thing without my own attorney - one who is competent and looking out for the interests of my immediate family - giving it a thorough going over. I don't believe there's a need to fly out and finalize any of what you talked about, all of it could be done over the phone and papers through the mail. Happens every day,

 

As for your BIL, it sounds like instead of taking action to prepare him for life after their deaths, they've deferred that for another near decade. Terribly unfair to your BIL, and for you, too, as it seems you, who do not know him or his habits well, are still going to have to be the ones to integrate him into a new community (how easy is this for an autistic adult? I really have no experience in this arena). Are they taking his suicide threats seriously? I mean, a traffic accident could take his parents any day of the week - what's the plan in a tragic scenario such as that? That seems to be an immediate need, not a plan depending fully on you and your dh to step in and navigate blindly.

 

And, they want you to eventually live in a group home as full time caretaker for an autistic adult plus 3 low mobility adults with advanced age care needs, while your husband works full time and you are still raising teenagers? Are you prepared to do that? It could work, but you seriously need to think about what kind of support systems you would need to work towards getting into place as this scenario begins to play out (ie, make sure their insurance covers in-home health care, respite care for care-giving family members, that sort of thing). Aging these days isn't usually a fully-active-one-day-pass-away-the-next scenario, there's more often a slowing down process or lengthy period of poor health that requires full time care. Really think about how that could play out. 

 

I'm glad for you that the stressful week is over, and that they're not immediately searching for a house, but it still sounds like you've agreed to go along with whatever plans they're going to be busy conjuring the next few years. Did the words "No, we will not do that" ever enter into the conversation? Perhaps I am really not fully understanding your posts, but it seems that very little was actually resolved in your favor.

[TechWife]

 

BIL is sort of a moving target. When he comes out here he would go into the HUGE autism community we have here. He has never really had friends as he never saw the need, however I am wondering if he has never seen the need because no one he knows really "gets" him. MIL has said she just fears that he would be lonely. He is sort of to himself right now. So "lonely" is a relative term. I wonder if we just went over there every few days, that would likely be enough. Again the autism community may also help him with this as well. 

 

I don't know where you live, so this may not be relevant at all. I'm not sure what you mean by "huge autism community." Is that some sort of group home? Do you live in an area with a lot of people who have autism? Do you know what services are available to adults with autism?

 

I think you may be in need of a bit of a reality check. It is impossible to tell what level of support your BIL needs unless you get to know him. Going to check on him periodically would be the bare minimum, I would think. In order to have a  professional help him, he will have to qualify for services from both a diagnostic perspective, functional perspective and a financial perspective.  Autism services for adults are extremely limited in most areas and if you have to pay for them out of pocket, they are very expensive. Most insurance companies don't pay for services for people with autism. Government based funds are limited and there can be wait lists involved depending on the resources in the area as well as federal, state and local funding. In short, you may not be able to count on any help from outside the family whatsoever. 

 

Living with his parents is likely providing a lot of structure and stability for your BIL. It could very well be why he is successful at work. Without that support at home, it may become more and more difficult for him to function at work. 

Just thinking here - without knowing your BIL personally, again, it is hard to say, but here are some things his parents may be helping him with, either directly or indirectly: 

 

meal planning and preparation

laundry

paying bills

making appointments/keeping his calendar and/or schedule

providing reminders for appointments, medications, etc. 

keeping up with his insurance: auto, health, dental

car maintenance

providing social interaction

cleaning

reminders about hygiene (by this I mean he may need to be reminded to brush his teeth, wash and comb his hair and put deodorant on) 

behavioral issues (relationship coaching regarding his workplace, etc.)

 

These are the types of tasks that an individual with autism may need assistance with throughout their lifetime. 

 

I think it's something you need to find out more information about. Directly ask his parents what they do for him and what their home life is like with him there. Which, if any, of the tasks listed above do they provide help with? Are they able to travel and vacation without him or do they include him in their plans out of necessity? What level of participation does he have with regards to decision making? For example, is he being given a choice about whether or not to relocate to your area? Does he participate in meal planning? Does he have control over his own living area? Is he legally dependent upon your parents (are they his guardians for either finances, physical care or both)? What does he think about your husband and yourself being involved in his care? 

 

I think you have a lot you need to find out about autism/Asperger Syndrome - wherever he falls on the spectrum. Please don't go into this blindly. It is better to know as much as you can up front, before you commit to his care. 

[TechWife]

They seem to think that they are going to be incapacitated at some point in the future. This strikes me as odd as my family was only like that when they were in hospice (exception would be a great grandfather with Alzheimers, and a grandmother who no one liked). Anyway, they are hoping that at that point we will move in with them to help care for them. To me that is planning for something that probably will not happen. However they did give us other options should we not want to do that. 

 

Um, okay. Maybe I am the bearer of bad news today, I'm not sure.  It's time for another reality check, though! The experience of aging in your family is unusual. Elderly people are frail, often brittle from osteoporosis, have poor balance, arthritis and a variety of health care needs. They usually have poor hearing and some loose their vision as well. Forgetfulness (not dementia or Alzheimers) isn't uncommon either.  That is what a healthy elderly person is like. 

 

An unhealthy elderly person is one who perhaps has a history of smoking and the resulting respiratory issues; has had a stroke or a heart attack; has taken a fall that has resulted in a broken hip or other bone; has contracted pneumonia or the flu - really, any number of things can incapacitate an elderly person. By incapacitate, I mean: they are no longer able to move about without close supervision due to the risk of falls (if they can move about at all), they may require assistance with bathroom tasks and may in fact become incontinent. It's possible they will need help dressing and even eating. They will likely require assistance keeping up with paying the bills, household chores, medical appointments, just about everything. 

 

I think your in-laws are very wise to think ahead like this, in all honestly. They are considering what they want their life to be like as they age and are including you in on the planning phase. It is important that you establish boundaries, however. You keep saying that you can't live with them and can't take care of them. Therefore, it is up to you to make that clear. You said they gave you other options - make sure you explore those options and have an idea of where to turn when they need help. Tour assisted living facilities together - it may actually be more appropriate for them to move to assisted living when they move to your town than to buy a home. If you have no intention of moving in with them and caring for them, it's something they need to consider. You can bring that fact up. BIL may qualify to live in assisted living with him, or other living arrangements may need to be made for him. This is why you need to know what level of care he currently requires so that you can find out if there are appropriate placements for him in your area. It may be best to move him directly to that placement instead of into a private home. 

 

Your in-laws are doing some planing, and it's great. However, many of these decisions will be up to your husband and he will want as much information available to him before the need arises. Puling out a folder of information is much easier than searching for the information in the moment.  He will need to become intimately familiar with their finances. It sounds like they are in the process of doing paperwork for that - perhaps they are completing power of attorney forms, advanced directives, writing wills, maybe even setting up trust funds. All of that is good! I do think it would be a good idea for him go go out there in order to go over all of the paperwork with them and their attorney. Knowledge is power in these situations. He does not want to be caught unawares! All of you do need to keep in mind that laws vary by state and the paperwork will need to be redone when they move to your state. That doesn't mean they shouldn't get it in place now, it just means that all of you need to be aware and make sure it's taken care of after their move. 

 

I could tell you more, but I feel as if I may have bombarded you with "bad news." I hope that you can get some perspective though. Before your husband travels out there, you may want to compile a list of questions that you both need answered regarding practical considerations. It might be a good idea for him to take information on area assisted living facilities and services for adults with autism with him as well. Since they are including him, and by extension you, in the planning phase, please be an active participant. It is time to speak frankly with them, set boundaries where appropriate and realize that their planning ahead is actually a blessing for all involved. 

[NorthwestMom]

TechWife is wise.

[Tsuga]

Tech wife said everything I wanted to say and more.

 

Good luck to you. It is not an easy time but investing time and the effort to be honest should pay off in the future. Hugs.

[TechWife]

TechWife is wise.

 

Just the voice of experience. My son is on the spectrum and my parents are elderly and frail.

 

Edited May 19, 2016 by TechWife

[TammyS]

So, it sounds like your inlaws laid out their plans to you.  What I'm not understand is, what is your reaction to them?  Do you like the plans, do you hate them, are you still studying them?  How did you and dh leave it with them?  Did you agree (either explicitly or through agreeable silence)? 

 

FWIW while I don't think you are obligated to sign onto whatever plans your inlaws make (and really, if you and dh are going to be involved, you should be making them together) they are WISE to be planning.  They WILL get old, sick, and frail - for a little while or for years (my dh's grandmother was sick in her home for several years and then spent another 10 years in a nursing home).  They need to plan where they will go and who will be responsible.  Believe me when I tell you that you DON'T want those decisions made when a crisis happens and your backs are against the wall.

[3 ladybugs]

BIL is able to survive without his parents for a week or so. This includes eating, going to work, taking care of the dogs and so on. My in-laws come out here once a year for a week and normally spend at least 2 more weeks in the year on vacation, normally without their son, sometimes without communication with him for a couple of days (on a cruise). MIL made it sound like he just needs someone to check to make sure he is paying his bills. He grocery shops on his own and has his own quirks pertaining to that. He also cooks on his own (and often for the family as a whole). 

 

I am still very concerned about his move over here. He moved to Seattle when he was 7 or something. He has been there for a VERY long time. However if he is as high functioning as MIL says, maybe he will not have a hard time with the move. This is WAY outside of my responsibilities right now. So I am trying not to think about it too much. We did express concern about his brother several times in the trip and I asked at least twice about how he felt about the move. I get the impression that they are more of a top down family so they really think BIL has no choice in this matter and he will "make do". I don't agree with that but since he doesn't talk on the phone and we haven't been out there in about 6 years, there is little I can do about it. 

 

I am also concern if they were to suddenly go. I didn't hear a word about BIL going to therapy right now. He clearly needs it. I will try to get DH to say something to his parents about that. 

 

Elder care was talked about in other terms. They said that there is a facility out there that they wouldn't hesitate to go to now. However they don't want to go there unless they had to. She also mentioned about some place in Tennessee that she wouldn't mind going to. No one is in Tennessee so I am not sure why that was even mentioned. We do have a brand new facility opening up next year in our town. That may be the best place for them, if they needed more then we are prepared to offer. 

 

Their end of life planner is from India and I guess over there it is common to have multigenerational houses. I know that they are skipping the part where they help with the baby though. Honestly I am sort of glad as they would have driven me nuts. It is bad enough when they are out for a week. I can just imagine what it would be like when they move out here and I have a teenager and a pre-teen. I didn't hear anything about them thinking of me as a nurse. However maybe it was implied. They did say that there would be money set aside for a visiting nurse to come for a few hours everyday if needed. Don't know if that counts. I sort of got the impression that they didn't want to talk about all of this really. They didn't even start talking about it till 1 hour prior to the boy's bed time. We kept them up for an extra 30 minutes but that was it. They also didn't bring it up till 2 days before they left. 

 

I know my husband well enough to know he is going to read EVERY LAST WORD of anything they want him to sign when he goes out there. They have encouraged us to come up with a list of questions to ask about elder planning. I have already asked them a question about when they stop driving (how to tell when they should) that they didn't know the answer to. 

[FaithManor]

First, I find it very odd they are "giving you options". Your life, your family, your decisions. They don't get to give you options like you are a five year old, "You can eat your broccoli or you can go without dessert."

 

Second, they may very well require a LOT of care.

 

Third, the BIL, like Techwife said, is going to need a lot of supportive services. If you and your dh are not going to be providing these, then your in laws need to do the planning and with some haste so he is prepared.

 

Fourth, seven years is a long time for them to be planning this far in advance to be in your area. It is avarice really given the current state of employment in this nation. A huge number of workers in your husband's age range will have to relocate to remain employed, and usually more than once, so you have no guarantees you will actually be around. We tried to explain this over and over and over again to MIL about our situation. She has a dd in Florida whose husband is already retired on BIG income so they will never have to move because even if her dd's real estate career dried up, they have indicated they would stay put because they love it there and he has the income to support it. So we encouraged her to move that way when she wanted to uproot to be closer to family since dh works in IT and we've moved many times over the years. We told her that while dh currently has an arrangement that allows him to work on a global account remotely so he does not have to work directly from the Tech Center - almost 100 miles from here - there was no guarantee that he would have that arrangement forever. Well his boss recently informed him that he probably won't be on this account two years from now and will be promoted to management at the Tech Center which given the 2+ hour commute one way - traffic is horrible - we will move. She is devastated, and of course because she invested in a home near us she feels like dh is obligated to her to drive the nearly 5 hours every single day on top of working a job that always demands unpaid over time when projects near completion. 60 hours per week is average, and 75 the last week of the project release is normal. She thinks he should suck it up and add on the 20+ of driving. Sigh....and of course as dh ages - he is 52 now - he tires more easily. So no, it isn't happening, we will be moving. My mother is in a tizzy fit about it. Though she is welcome to live with us, and knows we would get a place big enough to accommodate her, she is determined to stay put like a martyr and complain about us not taking care of her in her old home. Sigh....

 

I don't know how you could claim in this day and age that you will be in the same place in 7 years unless your dh owns his company and has total control of his job destiny. Thus it is highly unwise for them to plan this move so far in advance, and you should do everything you can to discourage it.

[Innisfree]

Their planner is from India?

 

Are they from India also?

 

Cultural differences add a whole new element of potential difficulty, and this situation was sounding like it could get quite complicated already.

 

I've done elder care and end-of-life care. It's hard enough when everyone is communicating clearly and openly. You really need to lay all your cards on the table, let them know what you will and will not do, and keep those limits clear. They are trying to do that, from the sound of things. You need to be just as clear about your limits.

 

I have a dd with autism. I agree with everything TechWife has said about the possible needs there.

 

If you and your husband think there is any chance of you two assuming any important role in his brother's life, please, for goodness sakes, devote some serious time and energy to getting to know him now.

 

Anxiety plays a huge role in autism. I hate to think what the brother is feeling like as he hears all this discussed. His future is being bandied about, you all are being discussed as possible caregivers or "supervisors", and he doesn't even know you.

 

The role you are being asked to play in his life is serious and significant. He has apparently threatened suicide: that should be a hint that he is feeling anxious. Please take these possibilities seriously. For example, spend a week or so with him and the in-laws every year, write him via emails, letters, whatever it takes. If you have any thought that you might take on this responsibility, then start letting him get to know you in a serious way now.

 

If you have no intention of being closely involved in his life, tell his parents now.

 

He needs to know who you are and that you care about him, or you need to remove yourselves from this planning process and all future scenarios immediately and clearly.

 

I hope this doesn't come across as unkind; it is not meant that way. But the impression I get from this thread is one of waffling, uncertainty, and unwillingness to be clear about boundaries. I can picture how much pain this situation would cause the individuals with autism I know, and it makes me hurt just to read it. I think it's time to get to know the brother and learn a lot about autism.

[TechWife]

BIL is able to survive without his parents for a week or so. This includes eating, going to work, taking care of the dogs and so on. My in-laws come out here once a year for a week and normally spend at least 2 more weeks in the year on vacation, normally without their son, sometimes without communication with him for a couple of days (on a cruise). MIL made it sound like he just needs someone to check to make sure he is paying his bills. He grocery shops on his own and has his own quirks pertaining to that. He also cooks on his own (and often for the family as a whole).

 

This is good information, but you need specifics.

 

I am still very concerned about his move over here. He moved to Seattle when he was 7 or something. He has been there for a VERY long time. However if he is as high functioning as MIL says, maybe he will not have a hard time with the move. This is WAY outside of my responsibilities right now. So I am trying not to think about it too much. We did express concern about his brother several times in the trip and I asked at least twice about how he felt about the move. I get the impression that they are more of a top down family so they really think BIL has no choice in this matter and he will "make do". I don't agree with that but since he doesn't talk on the phone and we haven't been out there in about 6 years, there is little I can do about it.

 

With all due respect, you need to get to know your BIL. If he will be dependent upon you for advice, help or even arranging care for him, it is NOW within your responsibility to get to know him. Not thinking about it is NOT helpful. Skyping with him may be easier for him than phone calls. I know it is with my son. You need to learn how he best communicates and do it his way. Email might work well, too. There is quite a bit you can do about it, right now.

 

I didn't hear a word about BIL going to therapy right now. He clearly needs it. I will try to get DH to say something to his parents about that.

You have repeatedly said you don't know your BIL. With that in mind there is no way you can possibly know this. If he does indeed have suicidal ideation, I agree with you completely. If that information was given to you out of context, though, it's hard to say. You do need to know that Therapy doesn't fix autism. He will have autistic traits throughout his lifetime.

Elder care was talked about in other terms. They said that there is a facility out there that they wouldn't hesitate to go to now. However they don't want to go there unless they had to. She also mentioned about some place in Tennessee that she wouldn't mind going to. No one is in Tennessee so I am not sure why that was even mentioned. We do have a brand new facility opening up next year in our town. That may be the best place for them, if they needed more then we are prepared to offer.

Don't Choose a facility sight unseen and without research. Location is only one aspect of care - it's worth driving another ten minutes further for your family members to be well taken care of. I encourage you to be an active participant in the research, especially if they don't live near you. Bring them information on assisted living as well as nursing homes. They need to plan ahead as much as possible as these places often have wait lists.

. I can just imagine what it would be like when they move out here and I have a teenager and a pre-teen. I didn't hear anything about them thinking of me as a nurse. However maybe it was implied. They did say that there would be money set aside for a visiting nurse to come for a few hours everyday if needed. Don't know if that counts. I sort of got the impression that they didn't want to talk about all of this really. They didn't even start talking about it till 1 hour prior to the boy's bed time. We kept them up for an extra 30 minutes but that was it. They also didn't bring it up till 2 days before they left. .

Well, it depends on what they mean by a "visiting nurse." Most of the daily care needed by the elderly doesn't fall within the scope of nursing. Also, there will likely come a point where it is not safe for them to be alone. A few hours a day won't be sufficient. I can almost guarantee you that if they are pushing for all of you to live together, then they anticipate that you will provide care for them as they age. As for them not wanting to talk about it - well, no one really does. It's just something that needs to be done.

 

I don't understand why your children were even involved in this discussion. This is a discussion for adults to have and not something children as young as yours need to be concerned about. With so many things up in the air, I fear all you will do is worry them. Not only that, but none of this is their responsibility. Planning is your parents' responsibility, setting appropriate boundaries and clearly communicating them are responsibilities that belong to you and your dh. At some point, your dh, and possibly you, will be involved in their financial affairs and determining what is best for their physical care age they become frail and in need of care. But, this is not something your children need to be concerned about at their ages.

 

Please exuse typos and odd phrases - I'm on my iPad and it's hard to write long posts.

Edited May 18, 2016 by TechWife

[TechWife]

Their planner is from India?

 

Are they from India also?

 

Cultural differences add a whole new element of potential difficulty, and this situation was sounding like it could get quite complicated already.

 

I've done elder care and end-of-life care. It's hard enough when everyone is communicating clearly and openly. You really need to lay all your cards on the table, let them know what you will and will not do, and keep those limits clear. They are trying to do that, from the sound of things. You need to be just as clear about your limits.

 

I have a dd with autism. I agree with everything TechWife has said about the possible needs there.

 

If you and your husband think there is any chance of you two assuming any important role in his brother's life, please, for goodness sakes, devote some serious time and energy to getting to know him now.

 

Anxiety plays a huge role in autism. I hate to think what the brother is feeling like as he hears all this discussed. His future is being bandied about, you all are being discussed as possible caregivers or "supervisors", and he doesn't even know you.

 

The role you are being asked to play in his life is serious and significant. He has apparently threatened suicide: that should be a hint that he is feeling anxious. Please take these possibilities seriously. For example, spend a week or so with him and the in-laws every year, write him via emails, letters, whatever it takes. If you have any thought that you might take on this responsibility, then start letting him get to know you in a serious way now.

 

If you have no intention of being closely involved in his life, tell his parents now.

 

He needs to know who you are and that you care about him, or you need to remove yourselves from this planning process and all future scenarios immediately and clearly.

 

I hope this doesn't come across as unkind; it is not meant that way. But the impression I get from this thread is one of waffling, uncertainty, and unwillingness to be clear about boundaries. I can picture how much pain this situation would cause the individuals with autism I know, and it makes me hurt just to read it. I think it's time to get to know the brother and learn a lot about autism.

Yes, thank you for so eloquently saying what I was thinking.

[FaithManor]

Th

Anxiety plays a huge role in autism. I hate to think what the brother is feeling like as he hears all this discussed. His future is being bandied about, you all are being discussed as possible caregivers or "supervisors", and he doesn't even know you.

 

The role you are being asked to play in his life is serious and significant. He has apparently threatened suicide: that should be a hint that he is feeling anxious. Please take these possibilities seriously. For example, spend a week or so with him and the in-laws every year, write him via emails, letters, whatever it takes. If you have any thought that you might take on this responsibility, then start letting him get to know you in a serious way now.

 

If you have no intention of being closely involved in his life, tell his parents now.

 

 

This is absolutely spot on. And I get the problem, I really do. I have a mentally ill father, and due to the way he treats my family, due to the nature of his problems, I can no longer take any role in the care of him. He is best left to professionals, people who understand his issues, and aren't personally hurt by him. I can visit him on a very limited time basis because he is so cruel to us now, but care giving is not an option. He does much better with the medical professionals that are sent to him.

 

You would either need to get very involved in his life now so he is comfortable with you and dh being charge of him in the future, or you need to make a line in the sand with the inlaws that they need to get him the therapy necessary to help him cope with the loss of them in the future and the transition to professional group home living.

[3 ladybugs]

We can't afford to come out there once a year where BIL is. Well we could, but it would mean that is ALL we would do for ANY vacation EVERY year. I wouldn't even be able to go and visit my mom. It is expensive to fly across the country. Flying DH out without me is just silly. If we did that, it would only be a matter of time before my family started wondering why I wasn't coming out with him. Not to mention we would have separate vacations. BIL barely communicates with his parents (it sounds like) so I am not sure how useful us going out there every year for a week would even be. DH doesn't want to be his keeper anyway. He said to his parents that he is willing to walk away from any inheritance to insure that but they have assured him that wouldn't be needed. 

 

DH works in an area that is abundant in the area. There are several companies around here that he could work at without us having to move. We actually purchased our house where we did so he could have easy commute to most areas that he could potentially work at. The possibility of him having to relocate for his job is there and has been there throughout our marriage but we have only had to do that once in 13 years. 

 

My in-laws are Polish and German. They might have a dash of eastern european mutt in there too. They are not Indian. I think this guy is telling them how great it is when everyone is in one big happy family in one house/compound. What he is neglecting on telling them that normally that is something where there wasn't 20+ years of the children living over 1000 miles from their nearest relative. I did tell them that we have had 20+ years of living on our own and we are going to have to have a big adjustment period if they moved out. They agreed to that at least. 

 

I don't think that there is a perfect solution to this. Yes there is a possibility that they could move here and DH could get a job in timbuktu but I also don't think it is right for them to be in Washington State alone (with a disabled son) as they age. I would rather them be closer at that point. They have thought about going back to Wisconsin (where they met and grew up). This would be a solution where the extended family could keep an eye on them but they don't know many there, and the ones that they do know are about their age. That also feels like we are pawning them off on extended family. 

 

In an ideal world, BIL would not have had autism and became a teacher or something like that and he could have taken care of them as they aged there in Seattle. That would have left us with relocating as needed for DH's career and getting my mother when the time came (she is only 19 years older then me). That world doesn't exist though. 

 

The way I see it there are only a few options. 

 

1) they move out here with the BIL. We hope that they have the life like my family has had where massive heart attacks and inoperable cancers took their life rather quickly. If that isn't the case we find a nursing home out here that they could go to if need be. BIL gets used to the life out here and we figure out what exactly he needs. 

 

2) BIL moves out here. We get to know him and keep an eye on him. Giving him the support that he needs when he needs it. My in-laws go wherever they would like to go if they didn't have a disabled son to worry about. Be it Tennessee, Wisconsin or wherever. 

 

3) They all stay put and we start putting money aside right now for when we need to race out there to take care of things. This would also come with the BIL probably eventually moving out with us after they are gone. 

 

I am wondering if this is part of the reason for the 7 years. FIL will be 75 then. Statistically speaking they may never move out here at that point. They are thinking that they have 20-30 years left. 

 

[TechWife]

No one is saying you need to go out there each year. We are saying that you need to make a focused effort to get to know him. You need to communicate with him the way that he best communicates. Skype calls, emails and old fashioned letters are all options. You won't know what works until you try. Chances are, if your dh asked him how he likes to communicate, he would tell him.

 

I'm glad your dh doesn't want to be his "keeper" because your BIL isn't a zoo animal, or any other kind of animal for that matter. Terminology like that is reminiscent of when disabled people were institutionalized so that the public didn't have to interact with them. It is very insulting.

 

I just can't even...

[Innisfree]

We can't afford to come out there once a year where BIL is. Well we could, but it would mean that is ALL we would do for ANY vacation EVERY year. I wouldn't even be able to go and visit my mom. It is expensive to fly across the country. Flying DH out without me is just silly. If we did that, it would only be a matter of time before my family started wondering why I wasn't coming out with him. Not to mention we would have separate vacations. BIL barely communicates with his parents (it sounds like) so I am not sure how useful us going out there every year for a week would even be. DH doesn't want to be his keeper anyway. He said to his parents that he is willing to walk away from any inheritance to insure that but they have assured him that wouldn't be needed.

 

DH works in an area that is abundant in the area. There are several companies around here that he could work at without us having to move. We actually purchased our house where we did so he could have easy commute to most areas that he could potentially work at. The possibility of him having to relocate for his job is there and has been there throughout our marriage but we have only had to do that once in 13 years.

 

My in-laws are Polish and German. They might have a dash of eastern european mutt in there too. They are not Indian. I think this guy is telling them how great it is when everyone is in one big happy family in one house/compound. What he is neglecting on telling them that normally that is something where there wasn't 20+ years of the children living over 1000 miles from their nearest relative. I did tell them that we have had 20+ years of living on our own and we are going to have to have a big adjustment period if they moved out. They agreed to that at least.

 

I don't think that there is a perfect solution to this. Yes there is a possibility that they could move here and DH could get a job in timbuktu but I also don't think it is right for them to be in Washington State alone (with a disabled son) as they age. I would rather them be closer at that point. They have thought about going back to Wisconsin (where they met and grew up). This would be a solution where the extended family could keep an eye on them but they don't know many there, and the ones that they do know are about their age. That also feels like we are pawning them off on extended family.

 

In an ideal world, BIL would not have had autism and became a teacher or something like that and he could have taken care of them as they aged there in Seattle. That would have left us with relocating as needed for DH's career and getting my mother when the time came (she is only 19 years older then me). That world doesn't exist though.

 

The way I see it there are only a few options.

 

1) they move out here with the BIL. We hope that they have the life like my family has had where massive heart attacks and inoperable cancers took their life rather quickly. If that isn't the case we find a nursing home out here that they could go to if need be. BIL gets used to the life out here and we figure out what exactly he needs.

 

2) BIL moves out here. We get to know him and keep an eye on him. Giving him the support that he needs when he needs it. My in-laws go wherever they would like to go if they didn't have a disabled son to worry about. Be it Tennessee, Wisconsin or wherever.

 

3) They all stay put and we start putting money aside right now for when we need to race out there to take care of things. This would also come with the BIL probably eventually moving out with us after they are gone.

 

I am wondering if this is part of the reason for the 7 years. FIL will be 75 then. Statistically speaking they may never move out here at that point. They are thinking that they have 20-30 years left.

You're right, things in the real world are rarely ideal.

 

I understand that an annual weekly vacation with your husband's family isn't necessarily possible, though it would be good to do something like this at least once so you can get a better idea of your BIL's level of functioning, begin to get to know him, and let him begin to get to know you. Without those basic levels of understanding you can't really make the important decisions under discussion.

 

I'm just saying that he needs to know you.

 

I hear you saying that maybe he's been enabled, over the years, to be more dependent than he needs to be.

 

I hear you saying that his parents are making decisions and thinking he will simply need to accept them.

 

But my experience leads me to think that his disability may be more extensive than you *or perhaps even his parents* really grasp. It's very easy to become accustomed to the things that are normal in our lives and forget how outside the norm they actually are. I get reality checks like that from time to time when I see my dd with peers of the same age who do not have autism. Suddenly I realize again that she is not acting like all the other 11-year-olds.

 

Consider the implications of the fact that you can't talk to him on the phone.

 

Can he call in to work if he is sick?

 

Can he call 911 in an emergency?

 

Maybe yes, maybe no. These are things you need to know. There's probably a lot more.

 

His disability is real.

 

And he needs to have a sense of who you are. He needs to feel comfortable with you. This is not necessarily quick or easy to achieve. He needs to trust you if you're going to be at all involved in his life.

 

The time to start building a relationship, whether it's in person, by email, by skype, or whatever, is now. That understanding and trust need to be in place before any move is made, and preferably before any significant decision is made.

 

Care of dependent relatives does tend to take over one's life. Yes, vacations get spent in ways you wouldn't have chosen. But someday we'll be the ones needing help. You don't have to take on the job, you just need to be clear and open so they can make the best decisions possible.

 

Finally, if the decision (with BIL's input) is that he needs to go into some sort of group home or other supported living situation eventually, please think about helping him make that transition before his parents become infirm. I've watched the disaster when that decision was left until after their death. It wasn't pretty. Encourage them to help him adjust while they are still able to ease the transition, so he doesn't have to cope with grief and life on his own all at once.

 

I know this is all hard, and I am sympathetic to the magnitude of what your in-laws are asking of you. It really is okay to say no. Just understand that they need to clearly know your limits, and your BIL needs time to know you. Hugs and best wishes.

[ktgrok]

I thought by keeper she was referring to the biblical passage about being your brother's keeper, not zoo animals or whatever. 

[FaithManor]

 

Finally, if the decision (with BIL's input) is that he needs to go into some sort of group home or other supported living situation eventually, please think about helping him make that transition before his parents become infirm. I've watched the disaster when that decision was left until after their death. It wasn't pretty. Encourage them to help him adjust while they are still able to ease the transition, so he doesn't have to cope with grief and life on his own all at once.

 

This is really important. Change is hard for a lot of people. It is doubly hard when it is because of a tragic event, it is quadruple the difficulty when one is disabled, and especially with a disorder like autism. He needs time to adjust while mom and dad are in good enough condition to visit him and help him make the transition. Given that there is no way to know how long his parents will last, I'd say if they are making plans to move because they think they will be infirm, then it is a good time to begin exploring options.

[Tammi K]

I'm confused about BiL's situation.  You say your husband doesn't want to be his keeper.  You also say he doesn't want to move from his current area because he is comfortable there.  Why make him move?  Why aren't his parents looking for a group home or support system in their current location?  It is not unusual for autistic adults, or adults with any other type of mental or physical health issues, to out live their parents.  Arrangements are made for those situations. Are there no resources in his present location to which they could avail themselves? 

[TechWife]

I thought by keeper she was referring to the biblical passage about being your brother's keeper, not zoo animals or whatever.

It likely is, but it is an insult there as well. The word "keeper" refers to keeper of things, animals.

[TechWife]

Flying DH out without me is just silly. If we did that, it would only be a matter of time before my family started wondering why I wasn't coming out with him.

 

No, it is not silly to fly your husband out to visit with his disabled brother, learn about him and learn about his needs. If you can't explain that to your parents, then you have relational issues to work out with them. I can't imagine that your parents wouldn't understand. Any reasonable adult would understand. They may not like it, but they would understand.

[OneStepAtATime]

Does your husband not want to get to know his brother (the man is his brother, right?)?  I am just thinking that maybe going out there at least one week during one year and making an effort to get to know him and understand his situation better  (at least your DH going) might help you and your DH to understand things better and to make more informed decisions based on fact, not on hearsay and assumption.  And I agree, establishing some sort of relationship through Skype or email or whatever right now makes a lot more sense than just hoping it all works out in the end.

 

 

[Catalytic]

Isn't it lucky that when we become parents, we get to choose to have healthy children, and never have to worry about what will become of a child with a disability after our death?  

 

 

But the world isn't perfect, so....I'm really confused why people have an issue with someone trying to make arrangements for their disabled adult child's care.  Who cares if it's 7 years in advance, thank God they're doing it, being responsible adults, and trying to figure out something that has probably caused them angst for many years.

 

Suddenly I'm thankful that even though my 5 can fight like cats and dogs, every single one of them would do whatever they had to to care for a sibling should it become necessary.

 

This thread makes me so sad.

[Spryte]

<snip>

 

This thread makes me so sad.

You, too?

 

It makes my heart ache.

 

OP, I hope you and your DH can very clearly articulate what you're willing to do, and soon, so that his parents can make appropriate arrangements. For themselves, but more importantly, for your DH's brother.

[bolt.]

Isn't it lucky that when we become parents, we get to choose to have healthy children, and never have to worry about what will become of a child with a disability after our death?

 

 

But the world isn't perfect, so....I'm really confused why people have an issue with someone trying to make arrangements for their disabled adult child's care. Who cares if it's 7 years in advance, thank God they're doing it, being responsible adults, and trying to figure out something that has probably caused them angst for many years.

 

Suddenly I'm thankful that even though my 5 can fight like cats and dogs, every single one of them would do whatever they had to to care for a sibling should it become necessary.

 

This thread makes me so sad.

I don't think "people have an issue with someone trying to make arrangements for their disabled adult child's care" -- I think they have a problem with the parents assuming, presuming, and possibly even dictating that their other adult child and his spouse simply will be taking over that care.

 

Parents don't get a choice about being caregivers to their own kids. Siblings do. Asking and hoping for a sibling caregiver after the parents pass is fair, but there are things happening here that aren't fair.

[Seasider]

I don't think "people have an issue with someone trying to make arrangements for their disabled adult child's care" -- I think they have a problem with the parents assuming, presuming, and possibly even dictating that their other adult child and his spouse simply will be taking over that care.

 

This is what I have meant all along - that OP and her husband must be intentional about whatever happens, or they could end up with deep resentment over being forced into a life choice they didn't have a say in.

 

As for the brother, my heart hurts for him, because I can't imagine shifting him about the country with little to no warning would be good or fair for him at all.

Edited May 19, 2016 by Seasider

[TechWife]

You, too?

 

It makes my heart ache.

 

OP, I hope you and your DH can very clearly articulate what you're willing to do, and soon, so that his parents can make appropriate arrangements. For themselves, but more importantly, for your DH's brother.

 

Me, three.

 

My son doesn't have siblings. We are hopeful there will be a compassionate cousin that can help him when we no longer can, but we don't yet know. We haven't gotten that far yet.  

[OneStepAtATime]

This is what I have meant all along - that OP and her husband must be intentional about whatever happens, or they could end up with deep resentment over being forced into a life choice they didn't have a say in.

 

As for the brother, my heart hurts for him, because I can't imagine shifting him about the country with little to no warning would be good or fair for him at all.

I agree.  There needs to be clear cut communication on all sides.  There is a lot that is at stake with this situation and many things that could go wrong.  Everyone could end up in a really ugly mess.

 

And the long term well being of the BIL absolutely needs to be dealt with respectfully and with understanding.  

 

OP, if your DH is adamant about not being his caregiver, and you are both adamant about not moving in with your in-laws (understandable), then that really does need to be communicated to them right now in very clear, plain spoken language, while his parents are still in a position to make other plans.  I realize this can be way easier said than done.

 

Your in-laws don't have the right to dictate what sort of involvement your DH and you have in BILs care or their care or where you move or when you move.  They can ask but they don't have the right to dictate.  I do think they are overstepping their bounds by quite a bit.  That would drive me nuts.  

 

At the same time, BIL is a human being who is going to need care and respectful treatment.  If his parents are not around to handle that care, and you and your DH are not going to care for him, it would be much better for the parents to know that now.  Arrangements can be made ahead of time, instead of during a crisis, when emotions are high and perhaps estates are being settled.  What if one parent has a stroke and the other parent is overwhelmed caring for the spouse?  What if both parents are killed in a car accident?  You cannot possibly know what the future holds.  Your DH needs to communicate clearly and firmly that he is unwilling to care for his brother, and he needs to do that right now.  

 

Or he might consider getting to know his brother, establishing a relationship, learning where his brother's actual level of functionality is and then decide if caring for him would be an option.

 

I realize that none of this is easy.  I wish you the best in navigating these waters.

 

:grouphug:

[TechWife]

I don't think "people have an issue with someone trying to make arrangements for their disabled adult child's care" -- I think they have a problem with the parents assuming, presuming, and possibly even dictating that their other adult child and his spouse simply will be taking over that care.

 

Parents don't get a choice about being caregivers to their own kids. Siblings do. Asking and hoping for a sibling caregiver after the parents pass is fair, but there are things happening here that aren't fair.

 

Are there? I don't see unfairness. I see parents who are trying to plan ahead and trying to involve their son in the process. He seems willing to take care of the money end of things, that is perhaps where his talents lie. However, it is not unreasonable for a parent to discuss the care of their adult disabled son with the person who will be managing their finances. Care of the disabled costs money - it just does. It is not unreasonable for them to hope that their neurotypical son would be willing and able to help him out, either. Perhaps they are bringing these questions up to their son this far in advance of their planned move in the hopes that he will, over time, seek out the information he needs to make an informed decision before they are in crisis mode. 

 

I don't know that the parents are assuming anything. From all indications, they are trying to persuade the son to become involved. There is nothing wrong with that - it is their desire. It would be the desire of any parent, I think. There is a lot of pressure when it comes to taking care of elderly and disabled people, and a lot of guilt. 

 

The parents can dictate what their adult children and spouses care for their disabled son only if they allow them to. It is up to the OP and her DH to become educated, make informed decisions and set appropriate boundaries. If they are emotionally healthy people, what they do as far as caring for the BIL is within their control. If they aren't emotionally healthy, they may be open to manipulation. In that case, their top priority should be to care for themselves and get to a point where they are emotionally healthy and able to set appropriate boundaries and communicate them. 

[plansrme]

Isn't it lucky that when we become parents, we get to choose to have healthy children, and never have to worry about what will become of a child with a disability after our death?

 

 

But the world isn't perfect, so....I'm really confused why people have an issue with someone trying to make arrangements for their disabled adult child's care. Who cares if it's 7 years in advance, thank God they're doing it, being responsible adults, and trying to figure out something that has probably caused them angst for many years.

 

Suddenly I'm thankful that even though my 5 can fight like cats and dogs, every single one of them would do whatever they had to to care for a sibling should it become necessary.

 

This thread makes me so sad.

I feel like we are reading different threads. The OP has been encouraged to stand up for her family when the inlaws are unilaterally making plans to move everyone into a family compound. That shouldn't make anyone sad. In the inlaws' defense, however, I can see why they might be receiving mixed signals.

 

OP, please make sure your inlaws have long-term care insurance. They seem hellbent on being incapacitated in what seems like not very many years, so it would probably be a good investment.

[TechWife]

 DH doesn't want to be his keeper anyway. He said to his parents that he is willing to walk away from any inheritance to insure that but they have assured him that wouldn't be needed. 

 

...

 

2) BIL moves out here. We get to know him and keep an eye on him. Giving him the support that he needs when he needs it. My in-laws go wherever they would like to go if they didn't have a disabled son to worry about. Be it Tennessee, Wisconsin or wherever. 

 

 

 

This has been bugging me for several hours. These two statements, made within the same post, are mutually exclusive. 

 

I get it that this is confusing. I understand these are things you haven't thought about before. I just think this is evidence that you don't have enough information to make an informed decision. That's fine at this point - but please, please, please, get the information you need. 

 

If you go to Amazon and search for "adults with autism" several books come up. I haven't read any of them, but the information in them might be helpful to you. It's a place to start. 

[Catalytic]

I feel like we are reading different threads. The OP has been encouraged to stand up for her family when the inlaws are unilaterally making plans to move everyone into a family compound. That shouldn't make anyone sad. In the inlaws' defense, however, I can see why they might be receiving mixed signals.

 

OP, please make sure your inlaws have long-term care insurance. They seem hellbent on being incapacitated in what seems like not very many years, so it would probably be a good investment.

 

TechWife says my thoughts in the post below yours.  From everything I've read in the two threads, there is some serious miscommunication going on, and a person's LIFE is, quite literally, at stake.  This is a VERY serious matter, and the communication needs to be clear, on both sides, TODAY.  Tomorrow is promised to no one.

 

This has been bugging me for several hours. These two statements, made within the same post, are mutually exclusive. 

 

I get it that this is confusing. I understand these are things you haven't thought about before. I just think this is evidence that you don't have enough information to make an informed decision. That's fine at this point - but please, please, please, get the information you need. 

 

If you go to Amazon and search for "adults with autism" several books come up. I haven't read any of them, but the information in them might be helpful to you. It's a place to start. 

 

Agreed.

 

 

I feel like I have been in these parents shoes, sort of.  DH and I made our first wills very soon after learning I was pregnant with our first, my third.  Until then, I didn't feel the need to make a will, as I had no possessions, and the likelihood of my ex-husband and I dying together was slim to none.  In addition, at the time, both my ex and I had parents that could still handle raising our children if needed.  DH and I had ONE person to take our child, my mother, and no backup.  And then, my ex abused our children, and his parents became too infirm to raise them, which left only my mother capable of raising the children if anything happened to DH and I.  From the time my oldest was 7 years old until he reached 18, it was a constant worry for DH and I that if anything happened to my mother, there would be no one to raise our children.  Once the oldest reached 18, DH and I discussed with him raising his siblings if necessary, and when he agreed, we added him to our wills as backup for my mother.  #5 joined the family shortly after the oldest turned 18.

 

Now the baby is 6, and our others are 24, 22, 18, 17, and we are getting ready to redo our wills again (we've since purchased a house, added more life insurance, etc)  We discussed how we are setting up the wills with all but the 24 year old (who I know will go along with whatever we want, thankfully).  My mother is 70 now, but in excellent health, so she is still our first named to care for the baby, and then it is the 18 year old, the 22 year old, the 24 year old, and the 17 year old.  The 18 year old will likely never be able to hold a job, we're still exploring options for him, but he will be able to live on his own.  For years, though, we didn't know whether he would be able to live on his own, so we (DH, I, and also my mother) planned for that, he will have a home, and be taken care of financially if the need arises.  He's our first choice for the 6 year old for many reasons.  The 22 year old was offended that she wasn't first choice, she considers the 6 year old her baby.  We had to all sit down together this past weekend and discuss why the 18 was first choice, and that of course they could pretty much share custody.  The 22 year old also said she would make sure the 18 year old always had financial resources (again, though, he's provided for with trusts from us and my mother currently). 

 

Anyway, I completely understand where these parents are coming from, and I'm probably 25 years younger than they.  It's HARD to figure out what to do with adult children who still need care, and I certainly understand their expectation that a sibling would *want* to help care for their son.  (I also understand the sibling NOT wanting to help, but that needs to be said and quit the pussy-footing around about it.  There's too many mixed signals right now imo.)

[3 ladybugs]

DH says that as of about 10 years ago, BIL was capable of living on his own for the most part. He lived on his own at college after all and he does okay when my in-laws are gone for a week at a time. He says that people with autism don't regress unless there are other factors at play. Now there could be other factors at play here. 

 

We are reluctant to have him in our home because he is very negative right now. We do know that on the limited conversations DH has had with him over the years. That could rub off on our children and that wouldn't be good for anyone. 

 

We know that he should move out here sooner rather then later. It isn't fair to him to be out there when here is likely where he is going to be living long term. However short of him moving in with us, we can't solve that right now. Assuming FIL retires in 2 years we may try to get them to move out here for BIL's sake if nothing else.

 

I know DH well enough to know that he wouldn't want his brother in Seattle alone. Yes there are probably many places he could go out there, but that isn't fair to him. Once my grandmother dies (she is 89) and my sisters graduate (youngest is 12), I will likely not really have a whole lot of pressure to go out there except for BIL if he were to stay. My father has told me since I was about 2 that he wants to move so I hope he does. It would be easier on us therefore if BIL were to move closer to us.

 

I have said before, my in-laws are very top down sort of people. I am actually impressed that they are even asking us the stuff that they are asking us. For YEARS they have been wanting DH to get closer to his brother but it is VERY hard with the distance and his non communication the way it is. DH tries all the time, but it isn't always successful. My in-laws don't communicate well either. When they were out, we found out that FIL was admitted to the hospital for testing on his heart (at some point in the last year) and we NEVER heard one word about this. They just talked about it like we already knew. We didn't. That isn't something you are likely to "forget". Because of this, we also want them to come out sooner rather then later. 

 

We don't think of BIL as an animal for the record. I know that what is happening has got to be hard on him. His whole world right now is his parents, and with them planning this stuff it is got to be hard on him. I do think he should be in therapy but we can't force this issue. Remember his parents are top down people. Maybe I should see if my DH can talk to him alone and tell him that no matter what, he will be okay. That may be all he wants to hear to make him not be so anxious. Bottom line is, if we have to, we would take him in. I am not going to allow him to go into anything remotely like an institution even if it may be to the detriment of my own family (meaning he is so negative that it rubs off on my children). 

 

Oh and for the record DH was negative till he moved away from his parents. So some of what we are seeing, may be that.

[OneStepAtATime]

DH says that as of about 10 years ago, BIL was capable of living on his own for the most part. He lived on his own at college after all and he does okay when my in-laws are gone for a week at a time. He says that people with autism don't regress unless there are other factors at play. Now there could be other factors at play here. 

 

We are reluctant to have him in our home because he is very negative right now. We do know that on the limited conversations DH has had with him over the years. That could rub off on our children and that wouldn't be good for anyone. 

 

We know that he should move out here sooner rather then later. It isn't fair to him to be out there when here is likely where he is going to be living long term. However short of him moving in with us, we can't solve that right now. Assuming FIL retires in 2 years we may try to get them to move out here for BIL's sake if nothing else.

 

I know DH well enough to know that he wouldn't want his brother in Seattle alone. Yes there are probably many places he could go out there, but that isn't fair to him. Once my grandmother dies (she is 89) and my sisters graduate (youngest is 12), I will likely not really have a whole lot of pressure to go out there except for BIL if he were to stay. My father has told me since I was about 2 that he wants to move so I hope he does. It would be easier on us therefore if BIL were to move closer to us.

 

I have said before, my in-laws are very top down sort of people. I am actually impressed that they are even asking us the stuff that they are asking us. For YEARS they have been wanting DH to get closer to his brother but it is VERY hard with the distance and his non communication the way it is. DH tries all the time, but it isn't always successful. My in-laws don't communicate well either. When they were out, we found out that FIL was admitted to the hospital for testing on his heart (at some point in the last year) and we NEVER heard one word about this. They just talked about it like we already knew. We didn't. That isn't something you are likely to "forget". Because of this, we also want them to come out sooner rather then later. 

 

We don't think of BIL as an animal for the record. I know that what is happening has got to be hard on him. His whole world right now is his parents, and with them planning this stuff it is got to be hard on him. I do think he should be in therapy but we can't force this issue. Remember his parents are top down people. Maybe I should see if my DH can talk to him alone and tell him that no matter what, he will be okay. That may be all he wants to hear to make him not be so anxious. Bottom line is, if we have to, we would take him in. I am not going to allow him to go into anything remotely like an institution even if it may be to the detriment of my own family (meaning he is so negative that it rubs off on my children). 

 

Oh and for the record DH was negative till he moved away from his parents. So some of what we are seeing, may be that.

:grouphug:  :grouphug:  :grouphug:

 

For the record, there are group homes that can be pretty awesome for people with challenges like autism, bipolar disorder, etc.  I have two friends and a relative that are living in group homes for various reasons.  All are doing well, and are actually doing better than when they were living with their parents.

 

For one of them, the first home they went to was pretty awful but once they were shifted to a better facility they thrived and now hold a part time job.  The home provides the scaffolding and structure and consistency they need to function pretty independently and they no longer feel like a burden to their parents.  Being in a "home" isn't like being locked up and forgotten in a cage, which your "institution" comment gave me the impression of.  It is more like those assisted living facilities for retired people with health issues.

 

For another friend, their health improved.  Parents were shoveling food down their throats all the time out of, I suspect, feeling guilty over their issues (which were NOT the parents' fault unless you count genetics against them).  They were also smoking constantly because it actually helped them with functionality.  Once they were in the home, they were put on a much healthier diet, proper medications were found and balanced out so they were able to wean off of cigarettes and they were able to start writing for various magazines and papers.  Again, they had the scaffolding, structure, consistency they needed plus other people in the home to do things with and people around to help them get to and from doctor's appointments and shopping trips and even help them further their education.   They aren't trapped there.  They can get out and do things.  The facility is set up to help them function more independently.  (FWIW, this person is highly intelligent, has a college degree and was very functional in college.  Functioning well in a college setting, or for a few days to a week on your own, does not guarantee you can function well day in and day out, for years at a time, without a lot of external scaffolding/structure/support.  Those are very different things.)

 

I don't know as much about the third's current situation since I only hear through the parent right now but they say my cousin is doing very well and the last time I talked to my cousin in person they said they preferred the "home" to actually being at home because they felt overprotected and smothered at home with their parents, much as they love them.  In the "home" they feel it is more like living as an adult in an apartment.  They are treated well and have friends living there, too, and they do volunteer work and help out at a local charity.

 

I don't know if any of that is useful to you but I thought I would share.  Your "institution" comment gave me the impression that you might not know much about group homes as an alternative.  They are not all created equal, obviously, and some are pretty awful but having now seen with my own eyes how great they can be I wanted to mention my personal experience.  Maybe you/DH could explore some options in your area?  Come at this situation from a place of knowledge.   Have some backup plans.  

 

:grouphug:

Edited May 19, 2016 by OneStepAtATime

[bolt.]

3 ladybugs, you don't seem to have a concrete grip on key questions like, "Which decisions belong to which person?" / "How do negotiation and consensus work?" / "When is negotiation necessary?" / "How does an expectation differ from a request or a demand?" / "How does negotiation work if it doesn't include emotional manipulation or a presumption to power?"

 

These (and other similar issues) are called boundary issues. You all seem to have them, and they are going to make everything confusing and upsetting. It will only get worse once it's actually happening.

 

I really suggest that, issuing this situation as an example of the boundary issues in your family system -- that you take 7 years and make a real effort at getting yourself (and hopefully your dh) some much better boundary skills. You have the time. It will make a world of difference.

 

For example,

 

It's not normal for people to imagine there is a "top" or for some family members to behave in a "top down" way. Lots of people would like to behave in "top down" ways -- but find that they can't... Because nobody they talk to actually agrees with the basic idea that there is anything particularly "top" about them. They don't actually outrank other free adults. They aren't able to successfully arrange others to their liking. They figure it out. Then they start making requests instead of demands, and find themselves able to understand when they need to find multiple solutions. The real world does this to "top down" people. They only persist in that style of interaction when other people allow it.

[Ravin]

One thing you might consider is doing the legwork to research what is available near you for an autistic adult--quality group homes, support services, etc. You can pass that info along to your in-laws, including BIL, to help them make informed decisions.

[catz]

:grouphug:  :grouphug:  :grouphug:

 

For the record, there are group homes that can be pretty awesome for people with challenges like autism, bipolar disorder, etc.  I have two friends and a relative that are living in group homes for various reasons.  All are doing well, and are actually doing better than when they were living with their parents.

 

 

I actually know a few young adults with unique needs who did MUCH better in a supported and structured living situation than living with aging and elderly parents. 

 

On the other end of the equation, when my grandfather had to move to a nursing home, he was actually happier, healthier and cleaner in that environment for a time when it was difficult to care for a very large, very angry man with dementia. 

 

I think it's is smart for the OP to have clear boundaries and lay them out consistently.  Supporting the business and emotional end of aging parents is a bunch without the day to day care taking.  Not everyone is equipped to be a good caretaker.  As it says in the OPs signature, she is a cancer survivor and that is enough reason in my mind to have pause about committing to a bunch of hands on care taking and having people move in.  It's not a stretch at all to think a cancer survivor may have unique health concerns as they age.   Not to mention still having very small children at home.

 

But you need to decide what those exact boundaries are and lay them out and let the ILs move ahead planning for what you can and are willing to do.  I wouldn't sit on it for the next 7 years.  I do think it's worth having OP DH's meet privately with his brother for his take on all of this.  Tolerating a "top down" mind set is not going to work for something like this.

[momacacia]

I am really confused, even just on the topic of care for your brother-in-law. You DH doesn't sound interested in being involved in his care at all, and you sound as though it's important to you to have him living in your home if you and your husband or his primary caregivers.

 

Also, I'd be sure you have an estate planning/eldercare attorney in your city lined up since everyone is going to end up living there. If your DH is POA, etc for his parents and brother, you could be seeing an attorney on occasion to work things out, consult, etc.

[3 ladybugs]

Boundary issues only work if they were in place because of some reason to begin with. In my family (2 bio parents, an ex step father, 2 step parents) I have already had the issues that normally come up in ones teens and early 20's with parents. I didn't talk to one parent or another for a while till we came to an understanding about things. Now all the rules are clearly defined and we go about things happy as can be. No one feels that they can't say what they want (within reason). This is the reason that despite my parents having probably about a 1/4 of the wealth of my in-laws combined, we are not really worried about them. We could just as easily be squeezed between my in-laws and my parents as I am the only adult child that either of them have at the moment (only child by my mom, my ex-step father has a daughter who is addicted to drugs so I am his rock, my father has a 14 and a 12 year old at home). 

 

DH never had that. He never rebelled. He never stepped a toe out of line. He never asserted his independence. The closest he came to that was when he took a job after grad school that wasn't in Seattle. DH has issues with many things and he sort of just bottles them up inside because he never had that rebellion streak (which rebellion, I actually think is healthy to a certain extent). My DH isn't one for confrontation and it has taken me nearly 13 years of our marriage to get him to see his parents as fallible. His parents also expect DH to do well at things. DH published a book a few years ago. A book. You can find it on Amazon! You can find it in Barnes and Noble (online)! You would think his parents would want to shout it from the rooftops. My parents certainly did. My father wanted a copy of it for his library.  His parents were nearly indifferent to it. Didn't even ask for a copy of it. Don't think they have ever even held it in their hands. In short, I think he is still trying to seek the approval of them, so a blow up he REALLY doesn't want to do. 

 

That is the aspect that I am not sure how to deal with. I could want to do EVERYTHING that everyone says on here, but I can't do it because bottom line is BIL isn't my brother. I am pig headed. I am stubborn, at the end of the day I will only bend so much (with a recovered alcoholic father trust me making waves is the LAST thing I want). 

 

My MIL is researching things out here. She said as much. I think BIL needs to get on wait lists now but I am not sure she would do that. I don't have the power to do that myself "just in case". 

[OneStepAtATime]

Boundary issues only work if they were in place because of some reason to begin with. In my family (2 bio parents, an ex step father, 2 step parents) I have already had the issues that normally come up in ones teens and early 20's with parents. I didn't talk to one parent or another for a while till we came to an understanding about things. Now all the rules are clearly defined and we go about things happy as can be. No one feels that they can't say what they want (within reason). This is the reason that despite my parents having probably about a 1/4 of the wealth of my in-laws combined, we are not really worried about them. We could just as easily be squeezed between my in-laws and my parents as I am the only adult child that either of them have at the moment (only child by my mom, my ex-step father has a daughter who is addicted to drugs so I am his rock, my father has a 14 and a 12 year old at home). 

 

DH never had that. He never rebelled. He never stepped a toe out of line. He never asserted his independence. The closest he came to that was when he took a job after grad school that wasn't in Seattle. DH has issues with many things and he sort of just bottles them up inside because he never had that rebellion streak (which rebellion, I actually think is healthy to a certain extent). My DH isn't one for confrontation and it has taken me nearly 13 years of our marriage to get him to see his parents as fallible. His parents also expect DH to do well at things. DH published a book a few years ago. A book. You can find it on Amazon! You can find it in Barnes and Noble (online)! You would think his parents would want to shout it from the rooftops. My parents certainly did. My father wanted a copy of it for his library.  His parents were nearly indifferent to it. Didn't even ask for a copy of it. Don't think they have ever even held it in their hands. In short, I think he is still trying to seek the approval of them, so a blow up he REALLY doesn't want to do. 

 

That is the aspect that I am not sure how to deal with. I could want to do EVERYTHING that everyone says on here, but I can't do it because bottom line is BIL isn't my brother. I am pig headed. I am stubborn, at the end of the day I will only bend so much (with a recovered alcoholic father trust me making waves is the LAST thing I want). 

 

My MIL is researching things out here. She said as much. I think BIL needs to get on wait lists now but I am not sure she would do that. I don't have the power to do that myself "just in case". 

Would it be possible for your DH to see a counselor?  Maybe you could phrase it as family counseling to prepare for possible needs of his brother later on?  It does sound like your DH's relationship with his parents is at the heart of a lot of what you are dealing with.  If he cannot establish boundaries and the parents are used to controlling the situation...

 

So sorry, OP, that you are having to deal with this.  Best wishes.

[QueenCat]

DH says that as of about 10 years ago, BIL was capable of living on his own for the most part. He lived on his own at college after all and he does okay when my in-laws are gone for a week at a time. He says that people with autism don't regress unless there are other factors at play. Now there could be other factors at play here. 

 

We are reluctant to have him in our home because he is very negative right now. We do know that on the limited conversations DH has had with him over the years. That could rub off on our children and that wouldn't be good for anyone. 

 

We know that he should move out here sooner rather then later. It isn't fair to him to be out there when here is likely where he is going to be living long term. However short of him moving in with us, we can't solve that right now. Assuming FIL retires in 2 years we may try to get them to move out here for BIL's sake if nothing else.

 

I know DH well enough to know that he wouldn't want his brother in Seattle alone. Yes there are probably many places he could go out there, but that isn't fair to him. Once my grandmother dies (she is 89) and my sisters graduate (youngest is 12), I will likely not really have a whole lot of pressure to go out there except for BIL if he were to stay. My father has told me since I was about 2 that he wants to move so I hope he does. It would be easier on us therefore if BIL were to move closer to us.

 

I have said before, my in-laws are very top down sort of people. I am actually impressed that they are even asking us the stuff that they are asking us. For YEARS they have been wanting DH to get closer to his brother but it is VERY hard with the distance and his non communication the way it is. DH tries all the time, but it isn't always successful. My in-laws don't communicate well either. When they were out, we found out that FIL was admitted to the hospital for testing on his heart (at some point in the last year) and we NEVER heard one word about this. They just talked about it like we already knew. We didn't. That isn't something you are likely to "forget". Because of this, we also want them to come out sooner rather then later. 

 

We don't think of BIL as an animal for the record. I know that what is happening has got to be hard on him. His whole world right now is his parents, and with them planning this stuff it is got to be hard on him. I do think he should be in therapy but we can't force this issue. Remember his parents are top down people. Maybe I should see if my DH can talk to him alone and tell him that no matter what, he will be okay. That may be all he wants to hear to make him not be so anxious. Bottom line is, if we have to, we would take him in. I am not going to allow him to go into anything remotely like an institution even if it may be to the detriment of my own family (meaning he is so negative that it rubs off on my children). 

 

Oh and for the record DH was negative till he moved away from his parents. So some of what we are seeing, may be that.

 

Do your in-laws have conservatorship of your bil? If not, they don't actually get to make the decision on where he goes. He does. Autism and aspergers are a spectrum. Your bil sounds very high functioning, with his work, etc. I think you said he drives too. He may need support with organizing and finances and such but he may still be very capable of making the decision on where he lives and the setting (his own apt, etc), In fact, as high functioning as he sounds, he may not qualify for things such as a group home. I don't think you've ever acted like you think of your bil as an animal. It just seems like you have forgotten that he has a say in what happens to him, just as you & your dh have a say in what you are willing to do to help him. From a mom with a child on the spectrum.

[bolt.]

Boundary issues only work if they were in place because of some reason to begin with. In my family (2 bio parents, an ex step father, 2 step parents) I have already had the issues that normally come up in ones teens and early 20's with parents. I didn't talk to one parent or another for a while till we came to an understanding about things. Now all the rules are clearly defined and we go about things happy as can be. No one feels that they can't say what they want (within reason). This is the reason that despite my parents having probably about a 1/4 of the wealth of my in-laws combined, we are not really worried about them. We could just as easily be squeezed between my in-laws and my parents as I am the only adult child that either of them have at the moment (only child by my mom, my ex-step father has a daughter who is addicted to drugs so I am his rock, my father has a 14 and a 12 year old at home).

 

DH never had that. He never rebelled. He never stepped a toe out of line. He never asserted his independence. The closest he came to that was when he took a job after grad school that wasn't in Seattle. DH has issues with many things and he sort of just bottles them up inside because he never had that rebellion streak (which rebellion, I actually think is healthy to a certain extent). My DH isn't one for confrontation and it has taken me nearly 13 years of our marriage to get him to see his parents as fallible. His parents also expect DH to do well at things. DH published a book a few years ago. A book. You can find it on Amazon! You can find it in Barnes and Noble (online)! You would think his parents would want to shout it from the rooftops. My parents certainly did. My father wanted a copy of it for his library. His parents were nearly indifferent to it. Didn't even ask for a copy of it. Don't think they have ever even held it in their hands. In short, I think he is still trying to seek the approval of them, so a blow up he REALLY doesn't want to do.

 

That is the aspect that I am not sure how to deal with. I could want to do EVERYTHING that everyone says on here, but I can't do it because bottom line is BIL isn't my brother. I am pig headed. I am stubborn, at the end of the day I will only bend so much (with a recovered alcoholic father trust me making waves is the LAST thing I want).

 

My MIL is researching things out here. She said as much. I think BIL needs to get on wait lists now but I am not sure she would do that. I don't have the power to do that myself "just in case".

I'm going to repeat myself; saying that there is just a lot more to the idea of having healthy respectful boundaries than I'm seeing in any of your posts in this thread. I hope you can find some good resources for yourself, and maybe your DH will also be interested.