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."