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My husband and I are 74 years old. My 80-year-old brother has advanced Lewy Body Disease with dementia and lives some 700 miles away. He was diagnosed a year and a half ago, at which time I abruptly assumed responsibility for his care. Using POAs for finance and healthcare and working with a wonderful local geriatric care manager (at my own ongoing expense), my brother moved to an equally wonderful Adult Family Home with memory care. I worked with a realtor and my brother’s friend/neighbor/tenant to sell his rental properties. All of this was done from my home, thanks to the Internet. For 9 months my husband and I paid my brother’s expenses ($274,000). Since the sale, I can now pay his bills online from his checking account and can reimburse us for ½ of those expenses. We will absorb the rest because I overpaid the contractor (hired on a time and materials basis, which I know better than to do) for refurbishing the properties before selling them. I also have an 84-year-old sibling who does not/will not contribute. My husband and I are on our own.


My brother now has assets that I anticipate will support him for another 2 years or more, at which time we will apply for Medicaid for him. I have 2 concerns:


1) What is my obligation, financially, if he does not qualify for Medicaid for some reason? I have engaged an elder law attorney in my brother’s city, at my own ongoing expense, to advise us on a continuing basis, and she will execute a promissory note to justify our reimbursement. I have all of the documentation necessary to support the loan when applying for Medicaid. But, assuming that Medicaid survives the current administration in Washington, D.C., there will be additional expenses. The state might cover some of those expenses, other than a private room, but I can’t guess what other expenses I might feel compelled to pick up. I understand that I would not be legally required to support my brother and our care manager assured us that the state would not have him living on the street, but I feel uneasy making long-term plans for my husband and myself if I can’t predict future financial obligations. Am I justified in declining to contribute financially after my brother has depleted his own assets?


2) Even more pressing is the damage already done to our own life style. We have neglected our own needs for more than 3 years while attention was directed to attending to my brother’s needs. More pressing than deferred house maintenance and no time for exercise is the damage done to our health. My husband has a number of health conditions that contribute to weakness and low energy, so he lacks the stamina to resist the anger, resentment, despair and depression that result from being burdened with the unchosen sacrifice of having our lives “hijacked” by a person whom he despises and has opted not to see for 40 years. My husband now envisions the retirement savings from 1 income (his) being drained. I confess to finally feeling considerable resentment myself, now that I have moved past the crisis-management stage of caregiving. My brother is a narcissist who was incorrigibly financially irresponsible, repeatedly “borrowed” heavily from his vulnerable elderly mother, never married, somehow drained an inheritance, frequented a casino, mortgaged his properties heavily, and didn’t save for retirement. Now he is tenderly cared for by a staff whom he condescends to them (they are “uneducated”) and resents them because they speak a foreign language among themselves. I would attribute this behavior to symptoms of LBD, which is characterized by paranoia and delusions, but this type of arrogant behavior was typical even before his dementia.


What now? This isn’t fair. The cost to us is immeasurable, indescribable. I finally see that I rescued my brother at the expense of my husband’s emotional and psychological health, which was shaky even before I assumed responsibility for him.

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I can answer this very simply. If you had a close, always loving relationship with your brother, take a bigger interest in his care. If not, walk. Second, it was his responsibility to care for himself and if he did not do that, you should not have to suffer. If he is abusive or difficult and he is causing harm to YOUR relationship and to YOUR life, stop - do NOT help. Offer emotional and moral support but you must take care of YOURSELF.
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You have no obligation financially. Even morally and ethically I don't think you do, but that like beauty is more in the eyes of the beholder, what is ethical or not

Given your own situation, I think there is none at all
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Filiapatri, there's a book called Boundries by Cloud and Townsend. Written from a Christian perspective. Godspeed!
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u have no responsibility to support him and I don’t know why u would take this on ... you are not legally responsible for him and I would not have taken this on no matter your or your husbands age
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I’m very grateful for the many messages expressing support and practical advice. I have received similar suggestions and encouragement from our geriatric care manager. Now it’s up to me to balance the support that I direct to my brother and my husband. Firm boundaries are called for and setting them will be a new skill for me. I have been conditioned by decades of reinforcement from extended family, but now I must assert my own standard of duty/loyalty. Thanks to all who took the time to post guidance toward that end.
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JoAnn29 Jan 2019
Good Luck and come back and update us. We learn from other's experiences.
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Toodles, you r a good person but its one thing helping a person who has just fallen on hard times and one who is in this position because of the choices he has made. Then for a sister, who is retired, spends 200k+ on a brother who seems to expect it and doesn't appreciate the sacrifice?

Me personally, I would have put it all in a lawyers hands and allow him to take his fees from the proceeds of selling the properties. Medicaid would have excepted that more so then her trying to reimburse herself. The lawyer could have set him up in an AL and eventually applied for Medicaid. She would have done her duty without any out of pocket. I don't think we are suppose to take care of someone else at the expense of our families suffering. Really surprised her DH didn't put his foot down before now.

Sorry, when you marry your responsibility is to your husband. This brother is a taker. Doubt he would do the same for her.
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Toodles Jan 2019
I still commend her for making a good effort on his behalf. That is truly loving!.. And she probably knows far more about "why" her brother became the way he is than the average person will ever know, & she also knows not to take that behavior too personally.. I worked in social services for years & the bond between siblings was so amazing to see... Sisters often looked out for brothers who seemed irredeemable, but then they would explain what they knew about what their brother had gone through, & his true character strengths, since they were kids!.. Sisters can really show compassion & loyalty!!.. Likewise, I would see brothers go the extra mile to totally provide for an ailing sister, & even buy her a dream house to live in when a husband wasn't there for her, etc. It is so touching!.. Of course, your husband is primary, but they don't have to compete. This man is just an older brother who needs a lot of help!...
I agree that she should not go into financial danger to keep him in such an expensive facility!.. I do believe that they may need some more financial agility & planning. There are much more affordable options & public benefits to be had!!... And her brother did have some resources & earned some Medicare options. But, the fact is that few people have the "perfect plan" when there is a family medical emergency, or an unexpected long-term disability...You have to keep researching, planning, & adjusting, I believe!.. However, I do think it's great that she has been a caring family member! Besides, there are many things that are infinitely more important & rewarding than "Money," to include Life, Love, your Faith & conscience, & your Family! ;)
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I just want to COMMEND YOU!!!.. I think it's really commendable that you helped organize & assure that your disabled big brother got the best care you could find.

Family IS vitally important; and when it's all said & done, you will be on the "high ground" & at Peace, just feeling great about what you did, especially as your circle of family & friends may get smaller & smaller in your elder years...

And in many cases, spouses come & go, but your Siblings will always be there.... Of course, your spouse cannot ever appreciate your deep bond (since birth) with a brother, who very well may have been a much more agreeable & adorable person before he became so ill. You certainly have memories & they weren't all bad. But, Love & Family should extend beyond "personality or lifestyle differences," so I commend you for taking on such a challenging project.

Now you can streamline this process, turn to Medicaid, and look for a more affordable set of options for his future. I think $274.000 per year is very high for a skilled nursing facility. Sometimes if you shop around & consider other nearby (or not so nearby) towns, you can find a better deal with equivalent or superior standards.

We thought we were stuck with an $11K per month bill for my father in a nice facility when his health suddenly declined, along with $20K regular charges in related medical expenses. (believe me, the entire long-term care situation will be difficult for anyone regarding ANY relative!! We do have an obligation to our father & he is caring to all. But, that did not make the planning any less troublesome or stressful!!)...

As it turned out, we were able to get discounts & referrals with the specialists' help, plus substantial Medicare coverage of extraordinary expenses. The family even sought grant aid. And then we found back-up options-- such as distant VA facilities (free & many received 5 stars). Plus, we shopped around in the immediate area & finally found a fantastic small home care home in a close neighborhood that offered 24/7 full-time registered nurses, delicious home-cooked meals, visiting therapists, and it was only $3K a month--wow!!...
My father does not yet qualify for Medicaid either, but we have financial limits.
Keep looking for a BETTER DEAL!!....& utilize Medicaid/Medicare, as needed!!...

Again, I commend you (& your husband should be glad that you are so faithful & compassionate, as demonstrated with your brother!!)...Hopefully, your husband will benefit from your good, generous heart in his future, too, & your kindness continues to sustain his health & your marriage even now!!.. On some level, I'm sure that he admires what you have done, even if it is a bother along the way. Just keep up the search for other options, reduce any financial burden, & change your outlook, so you feel the true benefits of resolving this situation in a commendable way!!..When your brother is finally settled in an affordable, quality situation, you will be so glad & at Peace throughout your life!!..Take care! :)
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Isthisrealyreal Jan 2019
Spouses come and go, so it is okay to disrespect your marriage vows for a brother that has been 40 year burr in his butt? To take your husband's retirement fund to help same brother?

Scripture tells us we become 1 when we marry, so you can't use that she is doing the right thing as a justification.

Your attitude is a large part of why spouses go, who wants to be treated like a dispensable money machine by anyone, little alone someone that stood before God and promised to forsake all others for you.
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I applaud your sense of duty and ethics. Only you can decide what is right for you and your moral quandary. Although I think many comments have been overly harsh and lacking in compassion, I do know that a lifeguard can’t rescue a drowning swimmer if he himself is getting pulled under.
Keep this formost in mind and it will help you make decisions that seem to be tougher for you than the community here.

Also, keep in mind that he is now on borrowed time, and you and your hubby will most likely be here after he has moved on.

Some of these same questions may be asked about you with your kids, etc. They will most likely be less difficult for them if you have some resources left for them to work with.

You seem to have stepped up when needed. Be proud of that! But a reassessment seems to be in order for your wellbeing and know that it is more important at this stage than continuously taking one for the team until there is none left.
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polarbear Jan 2019
MrSparks - beautifully said.
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Your bigger is not your responsibility and I would have not stepped up To incur his expenses period
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I'm not sure I would have paid to see an attorney. Some states have free elder care attorneys. You should not sacrifice your needs for your brother's. You need to consider your health and the health of your husband. It seems to me there are far too many who are struggling with their own financial and health issues while trying to care for other elderly family members. I did that with my mother - and was repeating it with another family member while struggling with my own health. While I didn't mind helping when I could, I developed health issues along the way and finally told them I didn't know how much longer I could be of assistance (I'm older by 10 years, dealing with a disability and age related illnesses, in constant pain from arthritis, back and neck issues, but they are dealing with a disability as well) At some point we all have our plates full with our own problems. You should not feel responsible for your brother's care. Take care of yourselves...
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Get a second elder law attorney's opinion. Do not enable your brother's gambling addiction.
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I'm pretty sure most of us want you to be repaid for the expenses that you took out of pocket. I'd be shocked if that were not allowed by the atty and by Medicaid. You might be told to prepay a funeral for him. However, you've said no one likes him and he's isolated himself. There's no reason to have a full funeral. What some people do is to have their bodies donated for medial research. I think it's a great idea. Mthr was a scientist and wanted to donate her body when she lived near a med school until she found out she'd have to pay. When I moved her near me, I found a company that prepares the bodies and does not cause the family to pay at all (unless the body can't be accepted for one reason or another). They even cremate and you have the option of them being returned or being sprinkled. Mthr always complained about a Pacific expedition she did not get to go on, so we feel having her sprinkled there is perfect. We are keeping $700 towards direct cremation as the back up option. Hope that helps you with that decision.
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You should not give anything whether it is financial or emotional that you can not afford to give. The old saying, "if you can not afford to give it than don't" is very true! I am also reminded the old saying, "do what you can live with"! Sounds to me your husband and you gave your brother all that you can, now, it is time to take care of yourselves!

Remember both of you are at the age that makes it very difficult to make up any money that you lost taking care of your brother. Pay yourselves back than figure out what can and are will to do.

The best of luck!
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YOU have NO responsibility in any way, shape or form for your brother. YOUR responsibility is to take care of YOU and your HUSBAND. No one else. Don't allow guilt or intimidation or anything else make you do something other than taking care of YOU. And why you or any human being on this earth would put up with what you have put up with is just insane - never, ever allow this to happen. And one more word of advice, if you are being treated in any way in a manner that is negative and affecting YOU physically, financially, emotionally, mentally - RUN AND NEVER LOOK BACK. Good luck. My prayers are with you.
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My opinion: First, reimburse yourself for 100% of them money you have spent on behalf of your brother. Next, stop spending your money for his care. Use his money to spend down his assets in preparation for applying for Medicaid (in case he ever needs it). Finally, let someone else take over the care for your brother - mentally and physically - so that you and your husband can resume a life without so much stress. Good luck toy you!
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First, reimburse yourself the full amount that was spent upgrading your brother’s properties. Not making the best deal with a contractor doesn’t warrant ‘punishment’. Also, it may be exactly the type of issue that your husband is harboring resentment over. Take the GCM’s fee out of his funds, too. You need to put a firewall between your money and his. He is spending down. There’s no reason in the world for you to throw your own money into that process.

Keep very fastidious records and Assume your brother will qualify for Medicaid when the time comes. Get on with YOUR life.
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Goodness. Are you justified in declining to fund superior care for your brother...

Well, yes, of course, you are justified; more than that, given that these funds have been paid over to the detriment, as you now see it, of your husband's welfare, I'd say you're obliged, wouldn't you? Surely, this isn't really a question.

I wonder if the difficult emotions you're feeling, such as some resentment, stress, anxieties about the future, perhaps fear of falling short morally, are feeding into each other. If you can untangle them a bit it might be helpful.

If I can single out one, it would be how you feel about what your brother's care has already cost you. Immeasurable, indescribable cost, to the detriment of your husband's wellbeing, on behalf of a person from whom you were estranged and whom your husband actively despised. I don't think you would be quite human if you weren't angry, at least somewhat. But, who with? Just your brother, or yourself as well, for being taken for this prolonged ride?

Well, everything that you have already given is done and gone. The support in his time of need was your gift to him; and whether or not he deserved the help and is duly grateful (you may laugh hollowly if you wish) it was generously given and is gone all the same. No use regretting. But if you now say that enough is enough, why would that *not* be okay?
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I have to add that your comment about you not being able to make long term plans for your life because you don't know what else you will feel compelled to financially sacrifice for your brother, who is forcing you or obligating you to pay one more penny for him? You have no obligation and we can't be forced unless we are willing.

You need to get over protecting your brother from his choices and be a wife. It actually makes me mad for your husband, you sound as though his feelings have little to do with your actions, you know how he feels and you are not stopping yourself and you feel like you both can't have a future because your brother might need your money. What? That is insane, read what you yourself wrote about your brother, you are willing to sacrifice your husband for this person? He made choices that have led his life here, he pays the consequences for those choices, that is life.

If you give him all your money and you or your husband becomes ill and need long term care who is going to give you all their money?
You can't expect people to give up their stability because you made bad choices. Your brother can't expect you to do that. If he is pressing you, stop seeing him or talking so often.

Please take care of your marriage, divorce at your age is hard, especially when you have no money.
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Then why did you do it in the first place? First of all, the cost for an attorney is not an "ongoing expense", it's just an expense. You'll also need to find out if your brother's state offers Lady Bird Deeds. If they don't the rules for qualifying for Medicaid will be different for your brother. Go seek a support group for both you and your husband to sort out your feelings against your brother- they'll greatly help you. Good luck to ya.
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I think you have gotten good advice here and reasonable course of actions suggested. I hope this guides you to a good outcome. I just wanted to comment on your statement "the cost to us is immeasurable. I finally see I rescued my brother at the expense of my husband’s emotional and psychological health." I hope your clarity allows you to prioritize your own wellbeing. You and your husband deserve a good life.
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Prepay funeral expenses. Learn ALL YOU CAN about the Medicaid paydowns, then begin to execute them. Investigate reimbursing yourself and DO IT.
Adding- you have NO moral/ethical responsibility towards him, but I will tell you that when it comes to the stresses and weariness and unfairness and sorrow attached to caregiving, whether you dearly love your dependents or are angry and irritated by your responsibilities makes little difference.
We are caregivers to two of the dearest human beings on earth, but we are also exhausted and sometimes ill because of the time commitments, scheduling issues, worry, decision making etc. connected to their care.
Fortunately for us in our case, we do receive bundles and bunches of love and appreciation for what we do, and for that we are endlessly grateful.
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JoAnn29 Jan 2019
You are one of the lucky ones. Makes caregiving a lot easier when your efforts are appreciated and LOs realize their limits.
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You lost me at "assuming Medicaid survives the current administration in Washington, D.C." - a very tactless and politically inflaming thing to say. We try to keep politics off this site.
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JoAnn29 Jan 2019
I didn't take it that way. Federal government helps to fund Medicaid. Cutbacks are a real threat and of course it effects those who have no money.
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Huntington’s runs in my family. I was seeking to find out if I could bring my mother home from a nursing home in her last days when I came upon your diliemma with your brother. You do not have to assume responsibility for your brother in any way. Actually, stepping back and letting the state know you are not assuming any financial burden is the best way to handle it. It hurts but it works out better in the end.
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Your husband is your first responsibility, along with yourself. Answer each question first in terms of how it affects you both. If your husband despises your brother and has not seen him for 40 years, and you basically agree with him, your husband and your marriage will be at risk if you put your brother first.
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You went far and beyond what I would have done. At your age, I would not have spent my own money based on the fact I may get it back.

Once you apply for medicaid and he is excepted there is no reason you should have to spend any money on him. He will have Medicare as his primary and medicaid as secondary so you can drop any secondary insurance he carries. He can use the drs. at the facility. So no need to take him out of the facility. Foot doctor will come there as well as Dentist and Eye doctor all paid by Medicare and Medicaid. You can have the facility become his payee for SS and any pension. Laundry can be done there too. If you want, all u have to do is visit. He is no longer responsible for bills. The spend down amt can only be used for him personally. He will receive a Personal Needs Acct (PNA) where a sm portion of his SS about $50, will be put aside for any personal things he may need. Like clothing, shoes, socks, books, candy, etc.

There is no financial expense to you. You r not responsible for brother. You can use his assets for the lawyer. Which I would now even if it means putting him in NH. Personally, I would have paid myself back as much as I could and put him on Medicaid. Why should you and husband suffer for a man who did this to himself. I don't blame ur other sibling. Why should he spend money he may need for himself in the future.
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cherokeegrrl54 Jan 2019
EXACTLY.....you said it perfectly!!
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1st off, stop paying for your brother in anyway, shape or form. Use his money to pay for the attorney and care manager.

Get all of your money back if possible, he can go on Medicaid sooner than later. Keep records of expenses for the repairs to sell his properties and get a promissory note for the entire amount, just because some unethical contractor over charged doesn't make it your baby. It is truly unfortunate that you ever spent any money improving the properties, almost never recoup when it is a forced sale.

He has made made his choices, welcome to the consequences brother.

Why would you ever subject your life to this person? You have no obligation to him whatsoever. You do have an obligation to your husband, so start paying brothers business out of his money, a NELA certified elder law attorney can file the Medicaid application.
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Wow--Amen to the Elder Care attorney and a huge pat on the back for taking on such a difficult situation! It's hard enough to care for the people we LOVE, much less the ones we don't (so much).

You need to stop the financial bleeding, now. Seeing an attorney with all these facts (I admit I got lost along the way!) and taking on as little as you possibly can for his care would be enough!

You shouldn't fear for your own independence at the sake of a freeloading family member. Your "obligation" was zero and is less than zero now. You did all you did out of a sense of familial closeness that you admit you don't even feel.

I hope you can be made whole and live a wonderful retirement with your DH.

You ARE NOT legally responsible for your brother, Never were, aren't now.

Please get some legal help and try to start healing from this. ( WE ALL have narcissists in our families--trust me, you are not alone in THAT!!)
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Wow! I guess the elder attorney is your best bet for advice at the moment. Perhaps a therapist who is familiar with these issues and that you are comfortable speaking with could help you decide on what is best. Other than that, perhaps a spiritual adviser of some sort, church or synagogue.

Best of luck to you. You certainly deserve some time for yourselves.
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