What are my options for dealing with a disabled (mentally, physically, emotionally) middle-aged sibling when my elderly parent, currently caring for sibling, is gone?
November 13, 2012 2:52 PM   Subscribe

My elderly father's health is rapidly deteriorating. He's the primary caregiver for my middle-aged brother, who is mentally, emotionally, and physically disabled. My brother doesn't want to go into a nursing home and my dad doesn't want to put him in one against his will. But my dad can't take care of him anymore, and is starting to have trouble caring for himself. Really long special snowflake details inside.

My elderly father lives in the Deep South, USA, and is currently living with one of my brother, who is mentally and emotionally disabled and only barely mobile due to the effects of a stroke several years back. My brother is more than a decade older than I am, and very difficult to manage - absolutely incapable of ever working again, or of living alone.

I live in the Far North, USA - too far away to be of much assistance to either of them. I don't make enough money to visit often to help out. I have another brother, also older, also living with my dad, who helps a little with things like taking out the trash or taking the dog out. But he is an unemployed alcoholic with no driver's license, and extremely unreliable.

My dad is reaching a point where he is definitely no longer able to be my disabled brother's primary caregiver. I'm not entirely sure my dad is able to be his own primary caregiver at this point (I'm visiting at the end of the month to try and assess that).

My brother is on (very low) disability payments and is eligible for a nursing home via Medicaid, but so far, my dad is extremely resistant to taking this step. He doesn't want my brother to go without things like his giant television (seriously, it's half the size of a bedroom wall) or his computer (on which he plays video games very, very badly and basically all the time).

I'm trying to get my dad to move up north to be near me, where I can look in on him and help care for him. But Dad doesn't want to put my brother in a nursing home "until he absolutely has to", and he definitely doesn't want to put him in a nursing home in the South if my dad's just going to end up moving North.

Ideally, I could get my dad into an apartment near me, where my brother would live with him until we could get him into a nursing home up here. Then my dad could live alone as long as he can, and then either I would move in to help out, or we would move him to an assisted living situation. Either way, he would be close enough to visit my brother as long as he's able. If he were in any way mentally impaired, I could justify making decisions for him, but he's in full (or mostly full) possession of his faculties. He's just stubborn and overly soft-hearted.

I love my dad, and want him in my life, and I'm willing to do anything I can to help him. But I have a great job that I really like here in the Far North, the best I've ever had, where I'm appreciated and on track for a promotion. I'm finally making headway against a mountain of student loan debt. I'm single and have no children, but I have friends and a life here. If I were to pick up and move down there to be near him, I'd be basically throwing away everything I've worked so hard to achieve for myself. There are no decent jobs in my field in the extremely rural area where he lives (or in any field, really) (unless I literally want to work in a field.)

Here's the complicated/weird bit. I don't want to have anything to do with either of my brothers after my father dies. I don't want any responsibility for my disabled brother's care. I don't want any contact with either of them, ever again. I would happily fake my own death rather than have them in my life after my dad is gone.

I know this sounds cold. But for my entire life, these people have lied to and stolen from my parents and from others. They're alcoholic drug abusers who care about no one but themselves. My disabled brother doesn't drink anymore, but this is only because he is no longer capable of getting alcohol on his own. As long as he was able, he would sneak fifths of vodka into the house against my parents' express wishes and drink himself into oblivion every night.

They both treat my father like crap, unless they want him to buy them something. I have no relationship with them, and haven't ever had one with them since I was a child. They've never held a job, never had a relationship with anyone, basically never been of use to anyone on this earth, including themselves. They've destroyed my parents' lives. The comfortable retirement my father built for them was consumed by what I think of as their "refusal to launch" -- it turned a comfortable retirement for two into an impossible living situation for four.

I feel sorry for my disabled brother, but I don't feel any affection for him. He ate, drank, and partied himself into the health situation he is in, mostly with my parents money financing his self-destruction, and now he refuses to lift a finger to care for himself, even to the extent that he is able.

More than anything else in life, I'm afraid my relatively healthy middle brother will find out where I live and come find me and beg me for money and housing for the rest of my life, like he has done with my parents. And it's not just this; I'm also physically afraid of him. I don't think he would hurt me while my dad is still alive, but he is a vicious person with a horrible temper who drinks and blacks out, and I'm afraid that if he knows where I live and I refuse to help him, I and my housemate could be in danger. As far as I know he's never hurt anyone, but his anger is terrifying.

I'm also afraid of ending up financially responsible for my older, but still fairly young (50's) brother for the rest of my life. My finances currently stretch to care for me and a healthy cat. They won't stretch much beyond that.

So, finally, the questions:

1) When my father dies, he wants to be cremated and buried with my mother's ashes. I'm willing and happy to do this for him, but it will mean going home. Can I arrange for this to be done remotely?

2) If my father continues to refuse to put my older brother in a nursing home, and doesn't move North, is there some agency I can contact when my father dies, local to them, to let them know there is a disabled adult who needs care in his house? Would this just result in my brother ending up homeless? I don't want to have to care for him, but my conscience would prefer that he have a roof over his head somehow.

3) If my father makes me executor of his will and gives me power of attorney, does this mean I'll be responsible for finding a place for my disabled brother?

4) How can I successfully disentangle myself from my toxic family when my dad, who I adore, passes on? Am I a horrible person for wanting to?

My father has basically no assets; his house is underwater, and he has no investments, no significant property, no significant insurance policies or anything that would need to be divided. Sometimes I think, when they eventually call to tell me my dad has died, I hang up the phone and change my number and hope they don't find my address. That's how willing to walk away I am.
posted by kythuen to Human Relations (13 answers total) 13 users marked this as a favorite
Best answer: How can I successfully disentangle myself from my toxic family when my dad, who I adore, passes on? Am I a horrible person for wanting to?

I can't really answer your other questions, but the answer to this one is a resounding no. A lot of the content of your post is rationalizing to us (and possibly to yourself?) why it's okay for you to cut these people out of your life. You don't have to justify ceasing involvement with people who are toxic, and though this probably sounds hokey, it might be helpful for you to frame it as a positive action you're doing FOR yourself rather than something negative you're doing TO your brothers. Your brothers are grown-ups who have made their own decisions and now have to live with the consequences.

I hope that someone else can come along and provide more concrete assistance with your other questions, but I just want you to know that you DO NOT have to apologize for taking care of yourself. I wish you the best.
posted by easy, lucky, free at 3:01 PM on November 13, 2012 [4 favorites]

Best answer: You sound like a stable, logical, caring individual to me and like the previous poster I agree that you needn't justify taking care of yourself by not allowing toxic, dysfunctional people into your life, regardless of whether or not you happen to share some DNA.

I would suggest starting by contacting the Department of social services for the county or state in which your dad resides and briefly explaining some of what you've outlined here. They can probably point you in the right direction, as well as giving you referrals for resources and possible answers for care-related legal or liability questions you may have as well.

Good luck, I hope things turn out well for you and your dad.
posted by BigHeartedGuy at 3:08 PM on November 13, 2012

Best answer: If your brother already has Medicaid and would meet the level of care to meet criteria for a nursing facility, it is also highly likely that he would qualify for a Medicaid Waiver (in Indiana this is called the Aged and Disabled Waiver)- this covers services like home health aides to physically care for your brother while keeping him in the home. In my state you can contact an area agency on aging and they will assist with signing up. There can be a wait list, but it will be worth it.
posted by shes_ajar at 3:40 PM on November 13, 2012 [5 favorites]

Best answer: 3) Nobody can make you be your brother's guardian. Obligations cannot be bequeathed.

1) You can absolutely contract a third party to manage your father's cremation and interment. The simplest way is to get a funeral home local to you to arrange things with a funeral home local to your mother's grave, and make it clear to all parties that none of your contact information is to be given to anyone.

2) In most US states, that agency is called Adult Protective Services or similar.

I am so sorry you are dealing with a toxic family situation and kudos to you for cutting ties with your brothers, who sound like bad news.
posted by Sidhedevil at 3:46 PM on November 13, 2012

Best answer: Also! I know you are thinking of what to do for your brother when your dad is no longer in the picture, bf for waiting lists like the Waiver (and maybe public housing to ensure shelter is covered?) you want him signed up, like, yesterday. Definitely set up power of attorney for your dad by contacting whatever legal aid or other resources you have at your disposal- I have seen people who waited too late and then were determined not even competent enough to name someone power of attorney (yikes!). Unless your dad has a guardianship of some sort, you should not be liable for your brother. Also! In case something happens much sooner than you planned and your brother is left without care, call Adult Protective Services and they can assist with items such as housing/agency referrals. That should be last resort though, set up whatever you can before that. Me-mail me with your location if you like, I'd be happy to brainstorm further. Good luck- this is definitely not an easy thing to deal with, and good for you for having such solid boundaries.
posted by shes_ajar at 3:50 PM on November 13, 2012 [1 favorite]

Best answer: Re: question 1 - coldchef is Mefi's resident death-or-funeral-questions bloke, he's an undertaker in southern USA and by all accounts an all round nice guy (and his tweets can be fascinating, hilarious, heartwarming and heartbreaking too, I highly recommend following him).

I am sure if you fired off a quick Mefimail to him, he'd be happy to give you advice about what you need to do to make cremation/post-cremation arrangements.
posted by malibustacey9999 at 3:53 PM on November 13, 2012 [3 favorites]

Best answer: In California, the organizations which coordinate services for developmentally disabled adults are called "Regional Centers". My wife is a co-conservator of her developmentally disabled brother, and the Regional Center has been quite responsive to her concerns. These would be the people responsible for finding a home and coordinating services for your brother when your Dad is no longer in the picture. I don't know how other states do it, but that might be a starting Google search.

The extent of your responsbility for your brother should be whatever commitments your Dad has made that your Dad's estate can handle. If you want to wash your hands of him, don't let him drag you down.

And, like the other posters, I'd reiterate: no points at all off for washing your hands of your brothers.
posted by straw at 4:06 PM on November 13, 2012 [1 favorite]

Best answer: If your brother already has Medicaid and would meet the level of care to meet criteria for a nursing facility, it is also highly likely that he would qualify for a Medicaid Waiver (in Indiana this is called the Aged and Disabled Waiver)- this covers services like home health aides to physically care for your brother while keeping him in the home. In my state you can contact an area agency on aging and they will assist with signing up. There can be a wait list, but it will be worth it.

This is exactly what I came in here to post about. So few people know about this and many people avoid Medicaid out of a mistaken belief that Medicaid will doom them/their family members to a terrible nursing home (which, that does happen, but it is not a foregone conclusion). Every state is a little bit different, but I would start by reaching out to places like the Department of the Aging, HARC and your county's social services programs to ask specifically about "a waiver from Medicaid to provide round-the-clock home health assistance instead of a nursing home placement."
posted by Snarl Furillo at 4:47 PM on November 13, 2012

Best answer: Families are sticky.

You do not owe it to your brothers to care for them. You do not have relationship with them. Or, rather, you certainly don't have any good relationship.

It's like if you had a brother or sister who was adopted, or if your father had died and you had a step-father almost all of your life, and with this adopted sib or step-father you've had a life-long, understanding and compassionate relationship. Giving both ways. In a word -- love. That person *is* your brother, or your sister, your father. No one would argue that, no one *could* argue that.

Your situation is the opposite that. These guys are not your sibs. Your thinking is dead on the mark, it's only your emotions that're hung some.

So that you can have the best possible relationship with your father, maybe make it absolutely clear that there is going to be no relationship with them after his death, that anything that is going to happen for them is going to be done by him, while he is yet on this side of the bar.

A lecturer that I admire said that families are bloody places; I understood it perfectly, it is a piece of his wisdom that I have carried these long years. I have a sister who is plagued with problems, and was more than plagued by them a decade ago, life had her by the throat. I was ideally suited to step into that situation, and to resolve it, and I did so. An lo, it was good.

So I felt that I'd paid my price, that I'd served my family, but then my sibs came through in my own time of real trouble. They would have anyhow, yet somehow it leveled a balance. Or something.

But with all of these people there is love. Problems, yes, but giving, both ways. Love. That is not present in your relationship with these men. So you do not have to become entangled. You wouldn't have to become entangled anyways but you are absolutely in the clear here.

So let your father know, clearly. Stark. For him, for you, for your love of one another. When he passes from the scene, walk.

A difficult road you're on -- good luck.
posted by dancestoblue at 5:26 PM on November 13, 2012 [1 favorite]

Best answer: Adding my voice to the "yes, wash your hands of them" chorus. Having blood ties does not obligate you to dysfunctional and abusive people. Your brothers sound like they would drag you down with them just as they dragged down your parents. There is no obligation to toxic people (and as far as I know, no legal means of making you responsible).

Do everything you can to keep yourself safe from your oldest brother. And by all means help your dad - his area's social services department or Aging and Adult Services is your most likely starting place, though in the rural South this might be terribly underfunded. Many Departments of Aging also work with people with disabilities to get them the help they need.

Also, given that your oldest brother is an alcoholic - Al-Anon might be really helpful for you.
posted by Rosie M. Banks at 6:05 PM on November 13, 2012 [2 favorites]

Best answer: It sounds like you have put some thought into your Dad coming to live with you, but then the rest of the family will sort-of come as well, which doesn't sound like a good idea.

It seems like you can help from afar by learning what resources your dad and your disabled brother are eligible for and then helping mobilize those resources. If you can get your Dad's health care provider involved, or get social services involved since there are two at risk people in this situation (your elderly dad and your disabled brother), someone can assess the situation and step in if things get worse.

If your dad does not have dementia (i.e. he is still aware of his life and his surroundings), moving him away from his home and culture may have additional implications that he could feel dislocated and become depressed. In my experience working with older people, it can work to move an elderly parent, but it can also have unforeseen consequences such as anger, resentment, anxiety and depression.

Good luck with this difficult situation.
posted by artdesk at 10:00 PM on November 13, 2012 [2 favorites]

Best answer: You are not the only source of help for your brothers. It would be one thing to cut them off in the dead of winter in the middle of a tundra with nowhere for them to go. However, they live in a developed nation with a lot of social services, both government and charitable. Yes, their lives would be easier if you sacrificed yours to help them but they can get a lot of help from other sources that won't require your financial and emotional bankruptcy.

They (and your dad) might choose not to. They might prefer drinking/destroying themselves into oblivion first, with the extra thrill of blaming it unfairly on you or your dad. But that would be their choice among a range of reasonably good choices.

I don't see any special circumstances in your post that make you the only option for their basic needs to be met. You are in no way obliged by any standards of human decency to ruin your life so your brother can keep his big screen TV.
posted by viggorlijah at 2:39 AM on November 14, 2012

Best answer: Can you rent a box at one of those mailboxes places that gives you a street address instead of a PO Box address? If so, you may want to switch to that address for everything related to the Deep South family - assume your brothers will have access to whatever address or contact info your dad has. Along those lines, I'd switch to a Google Voice number for contact with them, and if your dad passes you can screen that number however you wish without taking calls on it.

I do not think you should move down there, and I think it sounds sensible to avoid contact with the brothers. I am concerned that if your dad moves up North (although honestly that may be hard to convince him to leave the life he knows and move up there), both brothers will come and you will find it very difficult to shake them. I would say visit them in the South as you are able, and be cautious about your contact info.
posted by mrs. taters at 6:51 AM on November 14, 2012 [3 favorites]

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