Ethical Dilemma

[XerSib]

I'll cut to the chase. My folks are getting old and have not done enough, in my opinion, to prepare my adult sibling for the inevitable. He's lived with them since he was born. He's never finished college. Never had a real career. Doesn't even know how to use a computer. And yet, I believe him to be essentially high functioning. You can see this when you strip away all the co dependency factors and other negative conditioning.

Here's the dilemma. My wife and I completely disagree with how my folks have handled this situation and furthermore are very concerned about how realistic their planning is for my sib. There's been talk of a special needs trust and eventual group home. I question the degree to which the trust plus government aid can fund that, long term. The funding may need to last for 30, 40, maybe even 50 years? (given longevity trends). Sorry, but I don't buy it. Plus, the sib has anger management issues and I have nightmares about bad things happening in the group home - next stop, incarceration or institutionalization.

The worry is that sib will eventually try to come to us. That would be a marriage ender, among other calamities. We are tempted to leave the state if not the country (for this and myriad other reasons). Is that too harsh? Why we feel this way is, we feel my folks have been way too nice to him and should have pushed him out of the house long ago. Had they done that it would have been sink or swim, 20 years ago. Instead, we now have a 40 something essentially self induced invalid we are looking at.

What would you do in my shoes? I'll write some more about this later, but this should get things started.

========================

Me: 40something sib of difficult child
difficult child: 40something, ADHD, depression, social anxiety, possible Aspie, possible Fragile X, who knows what else

 

[Suz]

Welcome.

My son has a sib but not in the same context as yours...but there are many others here who will hear your cry loud and clear. Your sib-difficult child is a walking/talking testament to the importance of detaching early on so they can learn life skills and consequences.

You are at the right place.

Suz

 

[slsh]

My first thought is that it's time to have a serious discussion with- your parents about planning for sib's future, with the focus being that it is doing him a huge disservice to expect him to deal with- the loss of one or both parents *and* the stress of a new living situation at the same time. Knowing that a group home is the ultimate goal, the time to start working on those arrangements is now so that that transition will be completed hopefully long before he has to deal with the inevitable loss of your parent(s). To say nothing of the fact that group home living situations usually have ridiculous waiting lists and finding the right fit for your sib might take a while as well.

I would also recommend, and I mean this very gently, that you and your spouse keep your opinions about what has taken place thus far to yourself. Criticizing their parenting of him is likely to make them defensive and less willing to hear your concerns. As the parent of a severely physically disabled adult child, I can't even begin to share the jumble of emotions that go thru my head at least daily when it comes to future planning for him. Logically, I *know* that we have to consider a group home or similar type placement for him and we ought to start doing it soon (probably should have started 5 years ago). Emotionally? Forget it about it. Mention group home to me and I break down in tears. The thought of him being at the mercy of others makes me ill. And that's how I think about it - him being at the "mercy" of others. Irrational, illogical, unrealistic... but still very real to me. And I've been consciously trying to work thru this for a decade at least. I still hope and pray that of his two youngest sibs, one will be willing and able to step in for husband and me when the time comes, which is of course incredibly unfair to our younger children. But even recognizing that and knowing in my heart that that is not right? Doesn't make the planning any easier.

It is an emotional minefield - adult child with- disability, trying as a parent to do what you feel is best but at the same time when you're a 24/7 caretaker I think you inevitably lose perspective. I don't believe anyone will take as good care of my son as we do, and *nothing* is going to change my mind on that. I would guess that your parents might have a similar mindset, and it's going to be a bear to work with. I'm not saying it's even a valid belief, but it is what it is.

As far as funding... well, we haven't gotten there yet. I do have a step-bro in his late 40s who is blind/autistic/deaf (his mom got German measles during the pregnancy) who lives in an apartment with 24/7 supervision, with the sole funding being SSI/state services and the special needs trust. State covers staffing costs, step-dad was landlord until he passed and now my mom is. SSI covers rent, some food. I believe he also possibly gets food stamps? Medicaid for medical. Since the whole point of the trust is that it can only be used after all federal and state funding has been exhausted, I don't believe it gets used that often. So it can be done, but I know my mom and step-bro's mother have been heavily involved in staffing and general care issues - a responsibility that will ultimately fall to my step-sis. If family members weren't there, I'm not sure who or even if those kinds of issues would have been addressed - to be honest, I think step-bro would have been institutionalized long ago because he is very challenging.

My heart goes out to you - truly. It sounds like you may be put in a terrible position and you don't have to be. The trick is to get your parents to put the wheels in motion now and it may be that you are going to have to point-blank tell them that you simply cannot be responsible for sib's shelter and care when they're gone. They need to start this transition now because it is in sib's best interest.

Again, I would very strongly recommend you keep your opinions about the course your parents have taken thus far out of it as best you can - what's done is done, it cannot be changed. Fault and blame and shoulda/coulda/wouldas aren't going to solve the problem. Keep your eye on the goal - suitable placement and services for sib, as he is now.

Just speaking from my own control-freak, Type A personality, parent of a disabled dependent adult child perspective, what may nudge them in the right direction is the thought of someone else making placement and quality of life decisions about their son without their input. If you clearly take off the table the option of your sib living with you, and I can only imagine how difficult that conversation might be, it may prompt them to get plans laid out now. I think the last thing any parent would want would be for a state agency to make those decisions without our input.

Thanks for posting here. You got me thinking yet again about what I should be doing for my son, for all my kids, even though it makes me cringe.

 

[witzend]

Can you please explain further as to what it is that your wife and you disagree about?

Also, is your brother a ward of your parents or is an adult free and clear?

I would beware of allowing this to become an issue ahead of it's time between yourself and your wife. What you foresee may come to pass. Then again, it may not. Please don't allow yourselves to fight this battle before you know all of the facts. It is not good for your marriage, and has triangulation written all over it as far as who will think that they are in the right and who has the right to make these decisions.

How good is your relationship with your parents? Would you be able to approach them calmly and address your concerns with them? It might be more palatable if you approach it from the standpoint of "We're concerned that this may happen with us" rather than "we don't like what you have planned." You don't want to put them on the defensive regarding something that may not come to pass, and they may be more likely to take your advice if they feel that you will support them while at the same time you have your own definite boundaries.

 

[aninom]

I am in a similar (but also very different) situation myself, so I honestly can't answer without some emotional difficulty.

On the one hand - and I understand this is very much due to the familycentered culture I grew up in - the idea of NOT taking care of one's sibling in this situation feels abhorrent to me. On the other, this is exactly what I'm bailing out of doing myself, knowing that I can't help difficult child as it is today while she can derail my own life pretty badly.

I don't know what I would do in your shoes. I echo the idea of going into this conversation with your parents with a "let's work together, let bygones be bygones" mentality. Sure, we are siblings, and we have been affected by and gone through the same events our parents have in respect to the difficult child, but from a completely different perspective. What's to say we could, would, or should have acted any differently towards the sib had we been the actual parent? Try and not feel bitter, is what I'm trying to say. I know it's not easy.

The one idea that comes to my mind is to have your brother live close by, under nurse care, and engaged in some sensible activity to fend off isolation (now what that would be, I don't know, obviously pottery classes would be a stretch). You could come visit him - and I know this sounds like a burden, but in a small dose, it may actually feel good to be able to do this little thing for him - every week, other week or so without your wife. Of course this may not be feasible: how difficult is he? Is he violent? Would this be economically viable?

I agree that you shouldn't attempt to house him. If you do not feel positive towards it, and if he truly is simply too enabled and can actually function, it would be good for neither of you; there must be some other way. If he is violent, you SHOULDN'T, period.

Good luck and best of wishes to you. I'm really interested in hearing how things work out.

 

[DDD]

My husband and I have concerns about our grandsons future so I absolutely understand your fears. Do you know what instructions are contained in your
parents will? Who is named as the executor? Is there a codicil for your brother? If they have already put in writing with their attorney what they want done in their absence, that would be the end of it. Would they share that information with you if you expressed concern?

Do they work with any outside agency? Perhaps information about possible programs/future placements would be available from the professional who is
familiar with your family.

It sounds a bit like your fears of possible future happenings is impacting your life in 2009. The mention of possible relocation makes me wonder...are there
other factors playing into your unrest? Sending supportive thoughts. DDD

 

[JJJ]

I agree with the others to approach your parents with concern and not criticism.

One option that a mom I know has done is to place her daughter in a group home (her daughter was mid-20s at the time) and they (mom and dad) pick her up every Saturday morning and bring her home until after dinner on Sunday. This works for all of them as daughter is now used to the group home and when her parents die she won't have a major adjustment. The parents still are very involved with her and the group home knows that they are being watched because for 36 hours every week, the parents have their daughter and can check her for signs of anything not being right.

 

[Fran]

This is a long and minefield laden road.
I have a son who is 25. I have nudged him out of the nest and pushed him towards independence. We have tried every humane way to get him to be independent. Unfortunately, not all of our kids make it. Sink or swim usually means sink. Most parents can't or won't let that happen to children with the list of disabilities your sib has.
Although your parents may have not done a perfect job, it is easy to not realize how impaired some of our kids really are. What looks obvious to someone who is not in their shoes may not be realistic from the parent's point of view.
Having said that, your parents need to have a reasonable plan. You are entitled to ask questions about it but they have no obligation to share it with you. They also have no right to ask you to supervise your sibling if you aren't offering.
Our kids who function less than average but are too high functioning for an easy placement are difficult to raise. What they need is the ability to be as independent as possible with a safety net to help them when they stumble and they will stumble.
Many parents that have a kid like mine don't allow their kids to be adults because our kids seem to need to do it very gradually with incremental freedoms of choice and allowances for back slides.

I hope you can see things from your parents eyes even if you don't agree. I'm pretty sure they did the best they could with what they knew. 40 something years ago the information was considerably different than it is now.

 

[Nomad]

Was just thinking about this the other day as I have two adult children, one difficult child and one who is very healthy.

First of all, no one can make you do something you do not wish to do.

You might encourage your parents to apply for SSI Disability for your adult sibling (is this what you are already referring too?) In this case, chances are high they would have to help out (filing out the paperwork, etc) 'cause the process can be long and complicated. in my humble opinion, these funds, plus fund from a special needs trust, should be able to cover almost all, if not all the care to help your sib get by. Ideally, they could use these funds to help him get housing NOW to start the independence process.

Don't forget, even on disability, your sib can work part time...assuming he is not severally disabled and I gather from what you are saying, you believe this to be the case.

If at some point he makes a decision to participate in illegal activity, that would be his decision. It is not your decision. It is not your business. Let all this go. Besides, no need to worry about something that has not happened, nor something that is not in your control.


You might not want to be in charge of any monies going to your sibling though...whether this is disability monies or trust fund monies....

I agree with- Fran, your parents do not have a right to ask you to supervise your adult sibling and this goes double if this is something you do not wish to do. Do not worry about this...you can not be forced into doing something that is not what you wish to do. If out of the goodness of your heart, you want to look up some social service information or numbers of professionals and pass that information on to your parents and/or brother, that might be a nice thing to do. However, you do not even have to do that.

It would be nice if your parents were open to discussion.
Do you know any attorneys in your area who do this work? You could also give them the name of two or three or suggest they ask their friends.

In the mean time, live your life. It sounds like you have suffered toooo much.

If this troubles you excessively, you might want to seek the advice of an attorney yourself (information is power) and if it causes you to have lots of anguish, etc., do not hesitate to see a therapist for your own personal needs. Having a special needs person in the family is very draining. All of is here know this well.

Do not overly concern yourself with what they (your parents) are doing. Voice your opinion if you would like (and especially if you think it might have some influence), but then let it go. Run your race. Personally, if it would mess up my life I would NOT move to another state, certainly not another country! I would however, move to another area ( I would NOT live in the same immediate area). If it CONVENIENT to move to another state, if there is a GOOD opportunity for you in another state, then certainly go for that opportunity.

Life is toooo short. Your influence on your parents is likely very limited...might even be 'nil. It is what it is. Hopefully, your parents will do the right thing and you have been a smart cookie, will continue to be a smart cookie and will ensure a good life for yourself. Consider keeping up a friendly relationship with- your parents, but its okay to think differently on something. Protect yourself and your relationship with- your spouse.

It all starts with a good attitude and good choices. Learn to let much, if not all of this simply "go." Please don't argue with- your spouse over this and by all means, enjoy life!!!

God Bless.

 

[trinityroyal]

I too agree that your parents don't have a right to ask you or expect you to take care of your difficult child-sib. I also think that the advice to speak with them about it, concerned not critical, is sound.

My difficult child is very difficult to live with, and I can't imagine saddling any of my other children with the burden of responsibility for him. It overwhelms me sometimes, and I can't imagine how a younger brother or sister would deal with it.

If your sib qualifies for some sort of adult assisted living program, then the time to start getting him involved in it is now, so that he can make the transition and be settled while your parents are still healthy and able to participate fully in the transition.

Sending good thoughts your way.
Trinity

 

[XerSib]

Sorry I took so long to respond, end of quarter crunch at work...

Suz: Thanks for the very nice welcome!

slsh: Your post is a very nice "playbook" and some serious food for thought. I guess I need to take some notes from your and others' posts . I was particularly impressed with your cautions about putting my folks on the defensive, avoiding value judgments, etc. Excellent suggestions!

witzend: It's not so much that my wife and I disagree about this situation. Mainly, I am predicting that if my sib gets in any way entangled with our lives on a routine, day to day basis, nothing good will come of it in our marriage. My wife does not care for the person my bro has become (nor do I for that matter) - specifically the needy, spoiled, ungrateful, entitlement focused personality and of course the anger issues. If our engagement with my bro were to get any more substantial it would, I predict, be a marriage ender.

animom: I am actually very concerned about something you alluded to. At some point, even without this issue, my wife and I will retire in a different state. We would not want to set the expectation with my folks / my bro that we will be physically near. Because we probably won't be. by the way - one of the errors my folks have made was their failure to cash out their equity from the home in the expensive area they live in and downsize / relo in a way to set themselves up for the long term, inclusive of a really rock solid 40 or 50 year plan to set up my bro be it trust fund, small business, live in landlord in a multiplex, etc. Had they done that, it would have meant an area where we possibly might have been able to eventually retire ourselves. Oh well. Now we'll end up in different areas.

DDD: I am unfamiliar with most of the details of the will. But there is one I know - I am the executor. . That's cool, I can deal with that. But duly noted about the other details I really ought to try and get. Lots of follow up to do with my folks, for sure.

JJJ: Assuming the group home actually happens, I reckon that my folks will take a similar approach as your friend, as long as they are alive. But after that ... ? If we've already relo'd for retirement, bro will suddenly be on his own. However, even worse in a way would be if my folks pass prior to our retirement. There will then be two phases - an initial phase where my wife and I will be nearby (but probably maintaining a degree of relationship distance) and a second phase where we leave the area. See related note of general concern below ...

Fran: The "in between" high functioning but impaired condition is a perfect description of my bro. Good advice regarding some sensitivity dealing with my folks. Good point about info available 40 years ago versus today.

Nomad: Very interesting insights regarding some of the potential exposures if I end up being involved in cash flows etc. I completely agree - I shall have to check into this. Your other thoughts are very useful as well.

Trinity: I really appreciate the encouraging thoughts!

Now, for my general concern. I really hope my folks have not, in addition to designating me as executor, somehow included language specifying that the court vets me as conservator. The law in this state apparently says that if I end up as conservator, I/we cannot leave the state. That would really be a problem with our retirement plans.

 

[XerSib]

Shortly after New Year's Day I plan to have a sit down with my folks to discuss plans for difficult child's (and everyone's) future a bit more. My outline will actually be taken from the many excellent suggestions here. I will give an update afterwards on how it went.

 

[Stick a Fork in Me]

I think it's incredibly admirable that you would even think that there was any reason to even consider taking on the responsibility of your sibling - but at the end of the day I can't imagine any reason that you should.

I'm new here and my advice should definitely be taken with a grain of salt, but the one thing I'm learning is that as a parent I have to learn detachment and the art of letting my adult child be responsible for themselves. As a parent that is tremendously difficult... but must be done. As a sibling? It should be the same rule, and hopefully significantly easier to apply.

You can love your brother. Dearly. But there is not one reason on the planet you should take over where your parents left off with the enabling process. Even at 40 we can learn to be responsible for ourselves. When the gravy train ends, we learn to live on kibble if need be.

You matter. Your marriage matters. Your life matters. You have no need to sacrifice those things. Especially for someone who really shouldn't need the sacrifice.

The one place you can take over where your parents failed is by letting him fall... letting him learn to walk, and letting him find a life. On his own.


Again, I'm new and kind of an idiot at all of this, but my entire soul yells out "NO!" at the idea of you taking this on.

Run away. Run far, far away!!! LOL.

 

[XerSib]

OK, this will hopefully be the week of "the big talk" with- difficult child's (and my) folks.

Some things they said over Christmas indicate to me they are not being realistic at all about likely future scenarios.

Now is the time for me to make it clear that my relationship with difficult child is likely to be nothing more than it already is - until the day I die. WYSIWYG. Nothing more. If their plan assumes anything more, it is worthless and an invitation to nasty, nasty extended probate and horrible things to follow.

Wish me luck.

 

[witzend]

Leave out the nasty nasty probate stuff. Just wish them good luck on their plan and assure them that you will not be a part of it.

 

[Hound dog]

I admire the fact that you have obviously given this matter quite a bit of thought. As I see it, your biggest problem is that you are lacking a lot of information, especially as far as your parents specific plans as to what is to become of bro when they pass or become too incapacitated to care for him any longer. This is really not good if you are the executor of the will. Mostly because whatever plans they have made/ or plan to make will have to be set into motion asap once they pass or are unable to care for bro.

You really need to think about the part of "unable to care for bro" because as they age that is going to become an issue. It is just as likely that you'll face this issue far before your parent's actual death.

I have to ditto Fran's response. Forty years ago there was actually very very little information or treatment for someone such as your bro. That's true of even 20 yrs ago. I know it's not easy to look at the situation from the outside, see things that obviously stand out as enabling behaviors ect, and not make a judgment. I've done it with my husband (aspie) and his mother as well. I can see all the mistakes she made like giant red flags. But I also know she honestly thought she was doing what was best at the time.

My daughters and I have discussed this issue quite a bit since they've become adults. While I'm still trying to help my son become as independent as possible....he may never be able to live on his own. We come from a culture where family is the very center of everything. To not care for one of our own who can't take care of themselves is unthinkable. Yet, honestly...if either of my daughters felt they could not take on the responsibility of their brother I would understand. My son is very easy going, tries hard to be independent and such, but is still an enormous responsibility to take on and as much as I love him...not the easiest person in the world to live with.

Oddly, I have the same issue with my mother. Paranoid schizophrenic with the potential to be violent and quite dangerous, getting on in years and not going to be able to live on her own much longer. Yet I've already informed the family as well as my mother that I will not take on responsibility of her. She can move here and live in an apartment while possible and when the time comes move into a nursing facility of some sort. She will never live with me. Not because I'm cold-hearted or selfish, but because it would be a volatile situation I don't intend on putting myself into.

This needs to be discussed as openly and honestly with your parents as possible. It is important for everyone's well being, most especially that of your brother's. I didn't see whether or not your brother is a legal ward of your parents or not. If not, this may become a huge issue once they are no longer able to care for him as whatever plans that are made will require his cooperation.

If your parents haven't actually made "real" plans, you could help them acquire information about programs that are available and such. Because there may be many more options out there than they are aware of, it depends on where you are. I don't know if your brother is in treatment or not, but if he is it could be used to get him used to the idea of what will happen once the situation arises and help prepare him for it.

Odds are your parents are as worried about this issue as you are. I hope the talk goes well.

Welcome to the board.

((hugs))

 

[susiestar]

I believe that if you are named executor in a will there is a way to refuse it. There probably is a way to do it with conservatorship or guardianship also. I KNOW a guardian can refuse the responsibility. It is why planning is so hard for us. NO ONE will agree to take my children. My parents would step in, but will not agree to unless no one else will. I have a bro that might try but my children would not stay with him. husband has a sister with a grown son who openly refused to consider it saying she only ever wanted one child and would have no part of raising our kids if the unthinkable happened. My inlaws do not feel "interested". Sadly, none of the other relatives would do this even though until recently I was guardian for several of THEIR kids (I only learned this after the kids were 18 and let it "slip").

Planning is TOUGH. I am SURE it weighs on your parents minds. Just be open with them. Be honest and don't make judgements. Stress your lack of ability to handle things rather than their shortfalls or bro's difficult nature.

Also check with your attorney about whether it would be best to refuse the executor task or other surprises. You need to know if you have legal options should they go ahead and name you as whatever.

 

[XerSib]

OK, the talk is now scheduled for this week.

Wish me luck and thanks for all the excellent suggestions and feedback!

 

[susiestar]

Good Luck!! Please come back and let us know how it goes. Though you do not want the responsibility for your brother's care, you ARE being a really good brother by letting your parents know now what will happen and by trying to make sure they have thought through everything that needs to be worked out.

It may seem or feel like you are just trying to make sure you will not be saddled with your gfgbro, but really you are making sure that there are plans for his future that are realistic and will suit his needs. Remember that if you start feeling pressured.

 

[DDD]

I'm glad you have the discussion scheduled. Perhaps you should take a notebook with you and ask specific questions about what has been tried and, very importantly, when it was tried. Services vary so much from one community to the next and from one time period to another. It's possible that they have approached agencies in the past that you are not privy to.

In our family (slightly strange, I know, lol) we refer to possible future deaths/circumstances by saying "if I get run over by a turnip truck" then xyz. It's a long standing reference that my Dad used and it has passed on to the current generation. Although I'm not suggesting that you use that phrase I think that you might preplan how you reference their future deaths in a way that won't make them feel overwhelmed. In actuality it is possible "the turnip truck" might get you before it gets them. Accidents happen and it is easier to preplan the "what if's" using an unlikely but possible scenario.

Planning is difficult under the best of circumstances. If you show caring and concern in the meeting, chances are they will be less defensive and more willing to share. Good luck. I'll be interested to hear the update. DDD