HL20: Min-Shin Chen—Working Hard for a Good Day

In our annual HealthLeaders 20, we profile individuals who are changing healthcare for the better. Some are longtime industry fixtures; others would clearly be considered outsiders. Some are revered; others would not win many popularity contests. All of them are playing a crucial role in making the healthcare industry better. This is the story of Min-Shin Chen.

This profile was published in the December, 2011 issue of HealthLeaders magazine.

 "The way I look at it is not what could have been, but this is our new life."

A "good day" for family caregiver Min-Shih Chen is often measured by what doesn't happen for his wife Gloria, 71, who is battling Parkinson's disease. 

"A good day for her is there are no incidents. She is cared for. She is content. There are no expected illnesses or difficulties," says Chen, 68, of his wife of 42 years. "It's a good day when I can take sufficient care of her. If my wife has a good day, then that makes me happy."

Chen is one of the estimated 65 million Americans—roughly 29% of the population—who provide a total of $375 billion in uncompensated healthcare each year for a family member. That is more than double the $158 billion that is spent on homecare and nursing home services, according to estimates from the National Alliance for Caregiving and AARP.  

Gloria Chen was diagnosed with Parkinson's in 2004, and since then it's been a tactical retreat against the relentless degenerative disease. When Gloria, a retired music therapist, was still able to walk, Chen took her to a physical therapist and watched the treatments, using what he learned to help his wife. He devised a set of portable parallel bars in their Ann Arbor, MI, home to help her exercise.

"Since last year she has lost more and more of her mobility. Before that, I had transformed my home more like a physical therapy gym. We did a lot more physical therapy twice a day, to keep her mobility as long as possible. But eventually it was lost," Chen says. "I can no longer do walking with her."

The Chens' life now revolves around four daily "cycles" starting around 8 a.m. and ending around 8 p.m. Each cycle lasts about three hours, and involves bathing, feeding, administering medications, rest, and moving Gloria—who has been rendered nearly speechless as the disease progresses—from her bed to her wheelchair, from her wheelchair to her recliner, and back again.

"She can no longer eat solid food, so I give her a nutritional supplement. She has trouble drinking through the straw so I let her drink as much as she can and then I spoon feed her the rest. Then I transfer her from her wheelchair to her recliner. So, she rests and then I work around the household," says Chen, who retired from his job as an IT professional three years ago to care for his wife full-time. "I get her up and bring her to the dining room table because I really want her to feel her life as normally as possible. On the dining room table I give her medication, and this repeats four times a day. Also, I take the opportunity when she is more mobile at the time, we do physical therapy exercises."

Chen usually gets a couple of hours in between the four cycles during the day when his wife is napping. He keeps up with  household work and doing home modifications to adapt to her abilities. For himself, "I do exercises, and I have a garden. I am doing fine," says Chen.

Shifting Gloria from her bed to her wheelchair and the recliner are often the most challenging part of the day, Chen says, because they both weigh about 130 pounds. "I learned techniques from when she was in rehab and also learned some techniques from the physical therapist," he says. "Now because she has lost so much ability, I have to use a lift to get her to bed."

Chen says it could be worse. He says they are fortunate because they have Medicare, good retirement benefits, and secondary insurance through a commercial provider, and he doesn't have to leave her alone to go to work. "We still have to pay a fair amount of out-of-pocket expenses for copay and her supplies. But we planned our retirement for the worst-case scenario, so financially I am okay," he says. "I also know many caregivers are in real financial hardship."

When time allows, he is also a frequent contributor to a website established by the National Family Caregivers Association. "I started joining the network trying to just exchange ideas on how to take care of our loved ones. But then I found that the emotional aspect of supporting other caregivers is probably more common than just sharing ideas about how to take care of loved ones," he says. "And it is my social outlet, my outside contact. Sometimes we have new people join and the first thing they realize is 'Oh, I am not alone.'"

In the three years since he became a full-time caregiver for his wife, Chen has learned to adjust. Providing care for a love one requires a change in priorities and expectations, and he refuses to get depressed. "The way I look at it is not what could have been, but this is our new life. So, I no longer compare us with how other people live or how we used to live," he says. "I just think about how we can get the most out of the circumstances, and treasure whatever quality of life we still have left."

This article appears in the December 2011 issue of HealthLeaders magazine.