Meryl in Arizona

"We need someone to help coordinate the care and be an advocate"

Her pride is unmistakable as Meryl tells the life story of her father-in-law, Ben. "He was one of six children, living with his family in the ghetto in Poland, when they were sent to a concentration camp. What kept Ben alive was that he was strong and healthy and useful as a worker. If he had been weak, he would have been destroyed. Only he and another brother survived, and at age 13 he escaped."

Ben’s health began spiraling down in 2008 when his kidneys failed and he had to go on dialysis, Meryl says. By age 85, he was blind and diabetic, suffered from dementia, had a defibrillator for his weak heart, and was frequently in out of the hospital. "And yet," Meryl observed, "he has never once said, 'I wish this was over, I wish it could end.' I think because the concentration camp didn’t get him, he has this unbelievable survivor wish."

Meryl, who lives in south-central Arizona, knows the U.S. health care system from several perspectives. For more than a decade, she worked in a medical practice. Now she is an insurance agent, helping customers every day with Medicare and other health insurance plans. But for all her professional experience, she can feel as overwhelmed and frustrated as any family caregiver trying to help loved ones manage multiple, chronic illnesses and complicated health care systems.

"My father-in-law has a cardiologist for his heart, a nephrologist for his kidneys, an endocrinologist for his diabetes, and an infection control specialist. My mother-in-law takes him to dialysis appointments three times a week, for four or five hours. Recently, because of poor circulation that’s a complication of the diabetes, he had a toe with gangrene that had to be amputated, and it’s possible he may need amputation further up his foot.

"He’s in a nursing home now trying to get stronger and have physical therapy so he can come home. My mother-in-law is a strong woman — my husband was a wrestler in high school and he never could beat her at arm wrestling — but she’s 79 years old. If my father-in-law falls, she will not be able to assist him in getting him up. Since the dialysis started, all she does is care for him — her whole life now is devoted to caring for him. She is very strong and healthy, she works out more than I do — but she’s exhausted, you can hear it in her voice.

"Our family has been blessed in that my husband’s sister is married to an MD. So when things about my father-in-law’s health care get complicated and crazy, we have the luxury of calling my brother-in-law and getting a better understanding of what’s really going on, he can put it in lay terms for us. I have heard him say, 'Sometimes what people need is just an advocate — someone to go to the doctor visits with them, or to be able to explain to the out-of-town family members what happened at those doctor visits.' That’s what people really need, I think. We need someone to help coordinate the care and be an advocate."

Not long after Meryl recounted Ben’s story, he was judged well enough to go home, and spent a dozen peaceful days with his wife by his side. On March 21, Ben’s surgeon warned the family that the wound on Ben’s foot was not healing, and the foot should probably be amputated. On March 22, as Ben was heading to the car to go to a dialysis appointment, he had a final heart attack. Meryl described Ben’s passing as "very fast, very quiet" — and a reprieve from more time in hospitals and in pain. At the end, she says, "I just don’t think he wanted to go down that road anymore."