Health Care Forum: Heading for golden years, dementia shatters couple's dreams

Maribel and Melvin Salo were planning to live in Spain two months out of the year. It's where the Racine couple met and Maribel still had family and friends living in the Mediterranean city Alicante.

"We felt we had it made," Maribel said. "These were the golden years. We had everything planned out. Even if something happened, we thought we were set."

Maribel Salo. Image taken from the video, "Mel's Story" produced for Community
for Change's Health Care Forum at the Masonic Center, 1012 Main St., 1-4 p.m.

When you hear stories about breakdowns in our health care system, this phrase often comes up: "We did everything right." That's the case with the Salos.

Mel served in the U.S. Air Force for 20 years and left the service as a highly trained electrical engineer. He took a job at Grove Gear in Union Grove and the Salos bought a home in Sturtevant. Maribel worked at day cares and kindergarten classrooms. They had two children and now six grandchildren. They saved money and had good benefits their whole life.

Mel's dementia came on slowly. At first his "rush, rush" personality, as Maribel called it, turned into a more laid back attitude. Then one night they went to a neighbor's house to play dominoes. Mel, an electrical engineer who is brilliant at math, couldn't add the numbers.

A neurologist diagnosed him with frontotemporal dementia. There is no cure or even medicine to slow the disease's effects, and as it progresses, the patient requires heightened levels of medical care.

At first, Mel stayed at home. But Maribel couldn't lift him, then he became violent with her and one night he disappeared for six hours. Mel was found walking along the interstate. Maribel looked into 24-hour nursing care in their home, but it was too expensive. She made the difficult decision to move him to a nursing home, but that still costs $7,000 a month.

Now, just four years after he was diagnosed, the Salos' savings are gone. Mel, now 70, is living in the Becker-Shoop Center nursing home and Maribel is living in their house in Sturtevant. She can't work because she cares for Mel all day, and her money is running out.

"At night I go to sleep thinking, "How am I going to pay for this?'" Maribel said.

She's not alone. A recent study found medical bills accounted for 62 percent of all bankruptcy filings in the U.S. Three-quarters of the people who filed had medical insurance, and the numbers amounted to one medical bankruptcy every 90 seconds.

Maribel and Mel Salo during the recording of "Mel's Story" produced for Community
for Change's Health Care Forum at the Masonic Center, 1012 Main St., 1-4 p.m.

But Maribel's case runs deeper than money. Mel's dementia consumes her life. She'd like to bring him home and have nurses help care for him there, but it's just too expensive. She's found some relief through organizations like Hospice and a local organization that provides respite care, but is concerned the nursing home staff doesn't have the time (or in some cases the interest) to care for Melvin how she'd like to see.

"I don't want them to put him by the window and forget about him," she said.

So Maribel shows up daily at breakfast, lunch and dinner to feed him and to try and stimulate his brain. She gets a few hours in the evening to herself, otherwise it's back and forth to the nursing home. Her family in Spain is hoping she'll come visit in November, but she's reluctant.

"I'm worried he won't get the care he needs," Maribel said.

I interviewed Maribel in the chapel at the Becker-Shoop Center nursing home in Racine. Mel was by her side in a wheelchair, but now, four years after he was diagnosed, he can no longer speak or walk. Only his eyes offer any type of expression. They seem bewildered.

While the Mel she describes as a handsome, outgoing man is gone, Maribel is devoted to her husband of 45 years. She visits three times daily to feed Mel - he struggles to swallow - and try anything to get his mind moving. On this day she'd just bought him a light-up children's toy Mel held in his hand. Maribel said it held his attention.

"I can do it for him because he would do it for me," she said.

But emotionally, Mel's illness is a hardship for Maribel.

"He was the person who I always relied on," she said. "He was a rock to lean on, and now I'm all alone."

She didn't have specific recommendations on how she'd like to change the health care system, she just believes there's a better way. Losing Mel to dementia is pain enough, she said but to lose a lifetime of savings just to keep him in a nursing home simply compounds the difficulty.

Maribel counsels herself she has to be strong. "You have no idea what tomorrow will bring," she said. "There is always hope tomorrow."

But the grief and stress leave their marks. "It's sometimes hard to think this way," she admits. "You think, 'Am I able to continue?'"

What would help is being home with Mel. His condition may not improve, but at least he'd be in a familiar environment with people he knew, she said.

"It would be much, much easier," Maribel said. "It would be more comfortable."

Community for Change's Health Care Forum is Sunday from 1-4 p.m. at the Masonic Center, 1012 Main St. The non-partisan event is free and open to the public.