Bob Robinson: Support for patient and family
Roberta and Bob Robinson knew that they would have many challenges to face after he was diagnosed with dementia with Lewy Bodies, a progressive ailment that may include symptoms of Alzheimer’s and Parkinson’s disease, with hallucinations thrown in.
What they didn’t expect was the sheer number of decisions they would encounter. Roberta explains that they’ve managed pretty well with major decisions, like Bob’s intention to donate his brain to research after his death. “We’ve always had a policy of trying to work things out together,” Bob says, as Roberta interprets her husband’s speech, “but not always cheerfully.”
What sometimes gets her down are the hundreds of decisions in coping with a situation that varies from day to day as Bob’s health changes, as caregivers have to be scheduled, appointments arranged, and the household taken care of.
“People tell me to take care of myself,” said Roberta, “but in order to relax, you have to make five more decisions to do so. Actually, you can never really relax. Your mind is always focused on Bob’s needs.” Mission Hospice & Home Care social worker Karri Kaiser said it’s common for family members to struggle with “decision fatigue.”
“Roberta’s doing really well with it, but it’s not easy,” she said. “The way they communicate to me is amazing. Roberta understands Bob, including his ability to be humorous and tease a little.”
Bob, 74, was diagnosed with Lewy disease in 2009, only two years after he retired from a career in electronics and telecommunications. Roberta, 69, is a former teacher and private tutor. Bob was a sportsman who was on the Alpine Meadows National Ski Patrol, enjoyed tennis, and was an avid golfer. He and Roberta traveled extensively for his work and personal enjoyment.
“Bob has had, and does have, a really good life,” Roberta says, adding that their decision to stay together in their home, instead of Bob going into a care facility, has contributed to his quality of life. “Bob worked so hard to give us this house,” she says of the country home they have shared for 44 of their 46 years of married life. “He doesn’t want to leave it; nor do I want him to.”
But that decision comes at a cost. Bob has a private caregiver every day but Roberta and their adult son, Todd, handle nights and mornings. Their daughter, Megan, her husband and their grandchild visit on weekends and help with the many decisions to be made for Bob.
Their decision to join Mission Hospice & Home Care last March also wasn’t easy. Roberta admits that she was shocked when Bob’s doctor suggested it. “I didn’t realize the dynamics of hospice,” she said. “I thought it meant that this was it for Bob.”
Instead, she’s found that Mission Hospice staff has helped take some of the burden off her family, not only by providing medical care from doctors, nurses and home health aides, but social and emotional support. Their team includes Karri, Chaplain Nelson Lao, Dr. Gary Pasternak, home health aide Adell Thompson and case manager Jane Tobin, RN.
The team means that Roberta doesn’t always have to take Bob out for doctor appointments because a doctor and nurse visit regularly and are always available by phone. Karri can help follow up on prescriptions, billing and other issues. Chaplain Nelson provides caring, emotional and spiritual support for the family.
“We just have to take each day as it comes,” says Roberta. “I try not to anticipate, because we’ve learned each day is different. We’re thankful for the occasional plateau.”