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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.

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.
Helpful Answer (24)
Reply to Isthisrealyreal
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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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Reply to JoAnn29
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cherokeegrrl54 Jan 12, 2019
EXACTLY.....you said it perfectly!!
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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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Reply to Isthisrealyreal
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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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Reply to Midkid58
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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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Reply to MargaretMcKen
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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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Reply to IsntEasy
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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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Reply to Rebelnpink1968
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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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Reply to guiltandanger
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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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Reply to AnnReid
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JoAnn29 Jan 11, 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 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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Reply to Riley2166
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