Rebecca Barnard, of St. Louis, Mo., spent her career as a software developer, but her passion was fine-art photography. She was detail-oriented in both her job and her hobby, says her husband, Richard Rubin. So he was surprised when he began noticing small missteps: She'd park her car at an odd angle and forget to close the car door, and she started to get lost. They had a major scare when she took the wrong train to visit family in New York and didn't know where she was.
"There was a point at which it became apparent that something awful was going on," says Rubin. Seven years ago, he took Barnard to a memory clinic for tests and discovered she had Alzheimer's disease. She was just 53.
Alzheimer's Association. All told, more than five million Americans have Alzheimer's. The cost of medical and long-term care for Alzheimer's patients was $200 billion in 2012--not counting the estimated 17 billion hours of unpaid care by family members and friends.
Part of the tragedy of the disease is that it often strikes healthy, vigorous individuals, who then go through a series of stages that rob them of their memory, their awareness of their surroundings and, eventually, their ability to do even the most basic tasks. They typically live nearly a decade after the diagnosis and usually need full-time care, initially at home but ultimately in a nursing home.
"Costs associated with Alzheimer's disease cripple families at a time when they're also coping with the huge practical, social and emotional toll of this chronic brain disorder," says Carol Steinberg, executive vice-president of the Alzheimer's Foundation of America.
SCRAMBLING FOR CARE
At first, Rubin, a software developer, worked at home and was able to take care of Barnard.
"During the first year, most people couldn't tell that anything was wrong," says Rubin, now 65. But Barnard started getting lost in the house, and eventually even doing her morning routine became difficult. Rubin quit his job at age 60 to care for his wife full-time.
"Alzheimer's sneaks up on you," he says. "You think you can live with it and say you'll manage, but then it changes again." For some people, the middle stage can last five to seven years. But the middle stage for Barnard lasted just a few months.
After a long and complicated application process, Barnard qualified for Social Security Disability Insurance benefits of $1,700 per month and received retroactive payments back to her diagnosis in 2006. Qualifying for benefits has become simpler; early-onset Alzheimer's disease is now on the government's "compassionate allowance" list of conditions subject to fast-track benefits approval.
Rubin hired a caregiver to give him some relief a couple of times a week. Then Barnard had a sharp decline and started to need about 12 hours of care per day. The caregivers charged about $20 per hour--totaling $240 per day. Barnard's Social Security payments barely put a dent in her monthly care bill of $7,000, and the couple continued to drain their savings to make up the difference.
Qualifying for Social Security disability also made Barnard eligible for Medicare two years after her diagnosis, even though she was younger than 65. Medicare covered most of her medical expenses but not what Alzheimer's patients need most: custodial care, or the nonmedical care associated with the tasks of daily living, such as help with bathing, dressing and eating.
Medicare covers that care for only a short time when skilled care is also needed, such as when an Alzheimer's patient treated by a nurse for a broken hip needs help bathing.
Rubin eventually found an assisted-living group home with just nine residents. Barnard moved out of the couple's home in December 2008.
"Being together all the time was over, and it was the hardest thing I did in my life," says Rubin.
The assisted-living facility cost $6,000 per month, which they paid from Barnard's Social Security and the couple's savings.
"Basically, we had to start liquidating IRAs, and that was at the bottom of the market," says Rubin. They spent about $160,000 for Barnard's care during her two years there--more than their house had cost. In fewer than four years from the time she started needing care, half of the couple's retirement savings was gone.
THE MEDICAID OPTION
Rubin met with an elder-law attorney to start planning for Medicaid to pay for Barnard's care. But qualifying for Medicaid was tricky because Rubin was so young and had to spend down so much of his retirement kitty. The spouse who lives at home (called the community spouse) can keep all of his own income and, in Missouri, $115,920 in countable assets (such as savings). The spouse who needs care must have very little income and assets; those amounts also vary from state to state, but in Missouri, the spouse who lives in the nursing home can't have more than $999 in assets.