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.