She was sent to rehab, for what was supposed to be a week or so, to help rebuild her strength.
In rehab, she got a urinary tract infection, and also developed a painful rash. The first round of antibiotics didn’t work. The UTI caused her to become confused and delusional, though she hadn’t previously had dementia. It didn’t help that she was in unfamiliar surroundings, with none of her usual routines, and cut off from her family. “Can you come over this afternoon?” Carol would say to Eliza on the phone. Eliza would explain that she couldn’t, she was home in New Hampshire, “and you’re in Florida, Mom. And even if I flew down there, they wouldn’t let me in to see you, because of COVID.”
“Oh, right,” Carol would say.
And then, an hour later, she would call Eliza and say, “Hey, do you feel like dropping by this afternoon?”
The week in rehab stretched into a month. Then the insurance company abruptly notified Carol’s family that she had plateaued, and no further rehab time would be covered. She couldn’t go back to her independent apartment or even move into assisted living, having by now lost so much muscle tone that she couldn’t stand without the support of two aides. Long-term care — a nursing home — was the only option left.
Up until now, Carol’s pension and Social Security — which added up to $6,000 a month — had given her just enough income to live in her independent apartment, and it would have been adequate for assisted living. But the nursing home cost almost twice that. Her income was too low to cover the cost but too high to qualify for Medicaid. She was caught in a bind, and meanwhile the rehab bills — $400 a day — were mounting up. Eliza hired a lawyer, who explained that a Qualified Income Trust could pay all of Carol’s income to the nursing home, making her eligible for Medicaid, which would pay the difference.
Carol continued to be confused and kept asking Eliza why they couldn’t see each other. Eliza kept trying to find a way to bring her mother to live in New Hampshire. How to transport her? How to find a bed when the nursing homes were either full or, due to COVID, closed to out-of-state transfers? And how to pay for it, since the elder-care lawyer Eliza consulted in New Hampshire told her that the state does not allow QITs? Neither does Massachusetts or Maine; Eliza desperately checked the law in all the nearby states. If she moved to New England, Carol’s income would be too high for Medicaid but not high enough to pay for a nursing home. Her only other asset is a $23,000 bank account, which is about to be largely consumed in lawyers’ fees, the cost of moving her possessions out of her Florida apartment, and pre-paid funeral expenses.
Here is a family — neither rich nor poor — screwed by being in the middle. They’re screwed by living in different states, with inconsistent laws. They’re screwed by the high cost of care and the high cost of legal advice. They’ve been screwed by COVID, even though none of them have had it; COVID, and the slowness of test results, precipitated their disaster and decimated their already limited options.
They’re smart people baffled by the tortuous, brambly we’ve-got-you-covered-but-you’re-on-your-own clauses of insurance policies and government regulations. They’re trying to navigate a crisis — frailty, decline — under extreme duress and without a map.
It’s a crisis that will come to us all, sooner or later, and yet we keep acting as if it won’t. Instead of having a consistent comprehensible federal system that will help each of us and all of us when the time comes, we leave each family stranded, as if the frightening dependencies of old age and illness were a brand-new individual emergency.
“What day is this? Where am I?” Carol keeps asking Eliza on the phone. “Can you come by, later?”
Joan Wickersham’s column appears regularly in the Globe.