Divorced but Devoted, a Couple in Louisiana Struggles to Stay Together
If you love someone, the saying goes, set them free. But a combination of multiple sclerosis, bureaucracy, a hurricane and rotten luck forced Roy and Sue Lindsey to take this principle to extremes, creating a tale of devotion worthy of Homer — and a passion to reform the long-term care industry.
Roy knew Sue had MS when they married in 1991, but neither of them knew her case was progressive, or how to prepare. They both had high-pressure jobs with Jefferson Parish, La., Roy as a sewer supervisor and Sue as an administrative assistant, and they blew off steam by soaking up the New Orleans nightlife together.
“We did all kinds of things together for about three years, I guess. Maybe a little longer. Even when she got in a wheelchair I took her out to places,” Roy said in spring 2009.
“She told me it was a mild case. I did not know a lot about MS, and I never really thought a lot about it. I thought it’d be something that occurs once a year, once every couple of years.”
Sue’s difficulty walking led her to leave work on disability in 1992. In 1996 she fell and broke a hip getting out of a truck, and her mobility rapidly diminished. Roy paid out-of-pocket for home health aides to care for Sue while he was at work, but got pulled into state-sponsored nursing home care after a hospital admission.
“They never examined her. The girls just told me, ‘You need our services.’ I said, ‘I’m paying private sitters to come in.’ She said, ‘We’ll turn it in to the state. She needs 24-hour-a-day care.’ At that point, what do you do? You spend all this money — I can’t afford a nursing home. So in 2001 we had to get a divorce just so she would qualify for Medicaid.”
A lawyer friend helped Sue give Roy power of attorney, but he soon learned that power of attorney doesn’t equal the power to provide good care. Conditions in the nursing home so disgusted Roy that he moved Sue several times and asked the Louisiana Chapter to help publicize the state of the facilities he encountered, resulting in TV and newspaper coverage. A sheriff photographed the bones sticking out of Sue’s rotten flesh at one home, though no charges were filed.
Roy remarried in 2003, and credits his second wife with helping him continue to honor his commitments to Sue.
“Some days, without her encouragement and praying, I wonder how much longer I could continue to see after Sue’s care,” he said. “I recommend anyone being a caregiver to seek help. You cannot do it alone. Support groups, friends, family, and whatever higher spiritual power you may believe in.” He added, “There is nothing wrong with seeking professional help. I am still seeing a professional and taking medicine today.”
Sue was in nursing home No. 3 when Hurricane Katrina struck on Aug. 29, 2005. Roy was needed at work. The nursing home transported Sue to one of the two hospitals that remained open, but unknown to Roy, the hospital turned her away. So it was back to the nursing home, where there was only enough electricity to power a fan in a single, sweltering room. It took Roy three days to discover Sue was still alive.
A week later, the federal government airlifted Sue to… where? Nobody informed Roy, and to this day her medical chart from the trip is unaccounted for. He heard she might be in Texas, but she wasn’t. Roy’s sister in Memphis finally found Sue at a hospital in Nashville, where she’d had a seizure.
“I had some friends there. They went and spoke to her and let me speak to her over the phone,” Roy said. “MS had already affected her speech to where she couldn’t say but one to three words at a time, and the trauma of being alone and being put on a gigantic cargo plane and not having anyone to talk to — I just can’t imagine what she went through.”
Roy set himself a dual mission: to find a tolerable facility for Sue closer to home, and to advocate for change in the long-term care industry.
“I have never seen anyone abused in a nursing home, beaten or anything like that, but I’ve seen a lot of negligent care,” he said. “In addition to looking for a cure for MS, we’ve got to take care of the patients that may end up in nursing homes. We’ve got to change these nursing homes. That’s got to be at the federal level…. Everybody on the MS mailing list, when you get an e-mail to contact your senators or anything, please do.”
It took three years, but Roy finally found the perfect nursing home for Sue, two miles from his house. It’s old but clean, the staff seems happy, and they have enough generators to keep the AC running in a power outage.
After an unreimbursed $2,400 ambulance ride, Sue is home. Roy sees her almost daily, and when he told her they were close enough to the zoo to visit, she replied: “Good.”
Alas, Roy cannot yet rest easy knowing Sue is getting the best possible care: Louisiana is considering leasing the home to a private operator. He has no way of knowing if the move would affect Sue's care, but he's aghast that anyone would tinker with the one successful government agency he encountered in this entire odyssey.
Roy recommends that families living with progressive MS research the laws and get their finances in order before events overtake them.
“Please prepare and do not wait ‘til the time comes to plan, as I did,” he said.
After all the fright and uncertainty, there is one thing Sue can count on: Roy’s visits.
“I’ll do it until my or her time comes,” he said. “I’ll always see after her because I could not picture myself put in that position, to be put in a nursing home, and nobody to look after you.”
The National MS Society has published a guidebook to familiarize nursing home operators with the unique needs of residents with MS. Click here to download it (.pdf).