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.