Sometimes, Sandi Jett gets into the bed with her husband, Ray.
She talks to him.
“I say the Father’s prayer with him and I tell him we’re OK,” she said.
Ray doesn’t respond.
Only 61, Ray came down with early onset Alzheimer’s disease more than 10 years ago. He has been a resident at The Pines nursing home on Warren Street in Glens Falls since 2007.
Watching her husband’s decline has been terrible and Sandi is grateful for the comfort and care he gets at The Pines.
But covering the cost of that care has put Sandi and her daughter in a state of forced poverty.
Sandi was working at Continental Insurance Co. and living in an apartment with a young daughter, Autumn, when she met Ray in Key West, Fla. They married in 1995 and had a daughter, Raeanne, a few years later.
Ray was a musician known to open his brown A-frame house near Glen Lake to other musicians who didn’t have a place to stay. He owned a successful chain of counterculture clothing and jewelry shops, the Peace Emporium and the Silvermine, in upstate New York and Key West.
“He was at the height, he was doing wonderful,” Sandi said.
Ray and Sandi had been married about five years when he came to her and said he was having trouble organizing his thoughts.
For three years, they were in and out of medical offices, with doctors running tests and saying they didn’t know what was wrong with Ray, but it wasn’t Alzheimer’s.
By 2003, Ray needed round-the-clock care and Sandy hired someone to supervise him at his store, because he still wanted to go to work. The next year, doctors made a definitive diagnosis of early onset Alzheimer’s.
Every day, he was losing more ground.
Ray wandered so much at night, Social Services showed up after getting a call from a neighbor who heard Sandi trying to find him.
Sandi was also told by Social Services workers the indoor swimming pool in their house was no longer safe for Ray to be near. She would have to locate a nursing home for him.
“Every time he heard that, (he said), ‘I’ll be good. I’ll be good. I promise I won’t leave the house until you tell me.’ He was like a child,” she said.
No bed for Ray
In October 2005, Sandi filled out paperwork to have Ray admitted to Fort Hudson Nursing Center, which has a secure Alzheimer’s unit. She prepared her family and friends and celebrated their last Christmas together.
But Ray’s behavior became more unpredictable and volatile.
Fort Hudson officials informed Sandy they wouldn’t take Ray because he was violent. Not one nursing home from Glens Falls to Ticonderoga would accept him, even when beds opened up, Sandi said.
“My understanding is they know he’s going to go on for a long time and they can pick and choose. They’d rather have a comatose person in their nursing home to take into a bed than help some person that’s lived here and had a business and paid the taxes,” Sandi said.
Andrew Cruikshank, CEO of Fort Hudson Nursing Center, said he couldn’t comment because he didn’t remember Ray’s particular case. Generally, however, he said nursing homes in New York are not permitted to accept patients they can’t adequately care for.
“Nursing home facilities are not equipped and not designed to provide for the needs of individuals with violent tendencies. We have a very vulnerable population and while some cases of dementia can result in unpredictable behaviors, we do have to assure anyone who comes in we can safely meet their needs,” Cruikshank said.
Donna Balcom, quality improvement coordinator for Capital Living and Rehabilitation Centers, said the top priority in a nursing home is to keep everyone safe. If behavioral problems arise with a patient, a facility has no recourse, she said.
“Where do you go from here? It isn’t like there’s mental-health facilities around every corner, and once (other patients) are placed, they figure they’re in a safe environment,” she said.
Ray was taken to Glens Falls Hospital, where he remained for the next 2 1/2 months, while Sandi searched for a nursing home. He racked up tens of thousands of dollars in medical bills.
Finally, she managed to get him into a mental ward at a nursing home in Massachusetts 90 minutes away. She could visit only once a week.
By the next summer, Ray had stopped walking and talking and feeding himself. He was no longer hard to control. Sandi was able to have him moved to Eden Park, today known as The Pines.
Money is tight
While Ray’s placement in the nursing home was taking an emotional toll, Sandi was having to deal with financial issues, too.
She had begun applying for Ray’s Medicaid coverage and Social Security long-term disability benefits, even before he went into the hospital. For Medicaid, she had to account for “every penny” that had moved in and out of the couples’ bank accounts over the previous three years. At the same time, she was trying to run four locations of the business and raise her two daughters. She went on anti-depressants and ballooned to 190 pounds.
Sandi’s financial bind got so bad, an advisor suggested she take out a loan against Ray’s life insurance policy so she could pay her mortgage.
She got the loan, and while Ray was in the mental ward in Massachusetts, Medicaid and Social Security payments kicked in. She was able to prove Ray had been ill since 2003, so Social Security made retroactive payments.
Her money problems didn’t end, however. Medicaid covered Ray’s care but its stringent guidelines prevented her from earning even minimum wage in her business.
This past December, she dissolved the corporation Ray had started 27 years before, because she hadn’t been able to turn a profit in three years.
“We didn’t want to part with it,” she said.
After paying the mortgage every month, Sandi has little left over for her and Raeanne to live on. In January, she took half of her IRA, which would have gone toward her daughter’s college expenses, to pay off credit card debt. She is trying to find a job but has to keep under Medicaid’s earning limit, which is lower than she would earn at a minimum-wage, full-time job.
She will have to sell her house but promised Raeanne they can stay until the end of June 2014, when Raeanne graduates from high school.
In the meantime, Raeanne does without things like a yearbook. She gets school lunch for a reduced price.
Ray has been at The Pines for six years now. A mechanical lift moves him from his bed to his chair. He sleeps about 80 percent of the time and isn’t on any medication.
He has grown old in his sleep, Sandi said, and she is often mistaken for his daughter.
Sandi goes to visit him a couple of times a week, but usually doesn’t spend more than five or 10 minutes. She finds the one-way communication difficult.
“I go because I want them to know that he’s still loved. I go for myself. It’s not really for him anymore,” she said.
Ray, with beard and ponytail, is known as “the Music Man” at the nursing home because of his connection to the local music scene. Aides make sure he is dressed in his two-layer tie-dye shirts so he looks “cool,” and they keep the radio tuned to music they think he likes.
Angel, who used to work as a head nurse at The Pines, would make pillows for him that fit under his arms.
Sandi takes solace in believing Ray is well cared for. She has never seen a bedsore on him.
“I watch when they’re changing him or moving him. He got one irritation and I immediately got a phone call like 10 minutes after someone ... found some wearing down of his skin. They’ve changed ... to an air mattress that is all regulated, they’ve changed his wheelchair as he’s gained or lost weight,” she said.
Raeanne, 16, is learning to drive. She doesn’t remember the Ray everyone describes, because she was 4 when her father began showing Alzheimer symptoms. She gets a better sense of who he was through looking at photos.
Raeanne’s uncle used to fill in for Ray at father-daughter events at Girl Scouts. Her school made her an honorary member of Banana Splits, a group for kids whose parents are divorced, even though she didn’t fit into that category.
She used to visit her dad more frequently when she was in seventh and eighth grade, but she only goes on birthdays or holidays now.
“No part of it is easy,” Raeanne said. “It’s bittersweet because while he’s not home it’s safe for him and for us ... but at the same time we don’t want him to have to be there.”
Autumn Harding, Sandi’s 26-year-old daughter, whom Ray adopted, has more pleasant memories. She recalled a time when she was a little girl and her mother was dating him. Ray sat her on the kitchen counter so she could throw Brussels sprouts into a pot of spaghetti sauce he was preparing.
“I said, ‘He’s nice, I think we’ll keep him,’ ” Harding said.
Now she is pregnant with her first child, a boy, due in August. She hasn’t visited Ray since his birthday last September.
“It’s really hard to see him this way because you still want to picture him as this energetic guy that you looked up to, not this little man in a bed who looks the same but isn’t the same,” she said.
Sandi thinks occasionally about what their lives would be like had Ray remained healthy, but she has grieved for the man she loved and moved on. Friends criticize her for not going to the nursing home enough and for taking vacations, she said.
“It’s been 13 years. It’s been 10 years since I lost the person he was,” she said. “They don’t realize that if something happens to my husband we will cry but we’ll be so relieved. We kind of feel that his spirit is free already. He has no emotion, he’s not there.”