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janeThe Colberts: How to Become a Fearless Caregiver
(Part 3 of 5)
Louis Colbert thought he knew all there was to know about caregiving. He has 30 years of experience as a social worker and is the director of the Area Agency on Aging in Delaware County, Pa. But when he and his six siblings were confronted with the problem of "What to do about Mom with Parkinson's?," Louis struggled with the resistance many men feel about getting too close to a caregiving situation.
"As sons, we struggle a lot with how to do personal care for a mother," he admits. He describes the awkward dance he did with his mom, Helen, the first time he took her to the bathroom. "When I lifted her nightgown, she shrieked, 'I'm a married woman!'" he recalls. Louis learned how to share the dance with his mother so she wouldn't be exposed.
For the first year of his mother's decline, at age 83, from Parkinson's, diabetes, depression, and creeping dementia, Louis watched his two older sisters juggle all the hands-on caregiving at home along with their careers. He tried to "social work" them, he recalls, laughing at himself, by urging them to join a support group. "But they refused to identify themselves as caregivers. 'This is our mother, this is what we do,' they'd say. There was some shame involved. Alzheimer's is more prevalent in the African-American community, but it's underreported and diagnosed later, so families struggle too long on their own."
In the video, Louis tells the story of his conversion from a passive cheerleader of his sisters' efforts to a frontline advocate for his mother. He attended a Fearless Caregiver conference in his hometown, Philadelphia, and listened to the activist-author, Gary Barg. For 10 years, Barg has taken his conferences around the country to help caregivers see their roles as just as valuable as any other member of the care team, including doctors. "Your title is Fearless Caregiver Advocate," he tells them. "You want to gain the skills to become the CEO of Caregiving Inc. in your family—the boss."
But caregivers often isolate themselves, even put up a wall against accepting help from others, as two of Louis's sisters did for the first year. Barg says, "I try to motivate them to get their family members and trusted friends and neighbors to help. But there may be a deeper resistance, stemming from fear or shame: If I don't invite you to see what's happening to Mom or Dad, maybe it's not really happening." Barg writes a free weekly newsletter on Caregiver.com.
Louis eventually learned to be a fearless caregiver, "But it didn't click until I saw my mother being neglected in a nursing home." Helen Colbert had been moved from hospital to nursing home, by strangers, in the middle of the night. It was traumatic for her. Louis later found out that the program that controlled his mother's insurance didn't want to be billed for another night's stay in the hospital. And the nursing home had only a provisional license.
That did it. Louis insisted upon taking his mother home. The medical director of the nursing home flatly forbade it. Louis found himself hollering at the doctor. "In our society, some physicians think of themselves as God, but this doctor hadn't even seen my mother!" Louis stood his ground; his family believed they could provide better care for their mother at home. And because he made his point intelligently, and repeatedly, the doctor finally backed down.
Now Louis was in charge, and driving his mother home, he froze. I don't know how to do this! Despite his lifetime of experience in the field of aging, he couldn't imagine himself physically ministering to his frail mother. He wept. He was terrified. It was one thing to challenge a remote medical authority who wanted to dictate the rules for his mother's care. It was another matter to become fearless himself, and take the lead in corralling his siblings to share the care, at home.
Louis had stumbled upon the turning in the Labyrinth of Caregiving that I call "Playing God." Once having wrested control over his mother, he realized something that all caregivers must face: There is a God, but we ain't it. Louis looked to his higher power for help; he prayed. And then he looked for help in his community.
Louis found the wonderful PACE program, a Medicaid-waiver program that provides community-based medical and adult day care for older people who would normally go into nursing homes. The philosophy behind PACE is an interdisciplinary team approach. The family sits down with the doctor, nurse, social worker, and director of the care site, and together they make a care plan.
"They send an aide to the house to wash and dress my mother and take her in a van to the facility, two mornings a week, for a stimulating social experience, and for her medical care," Louis relates. "All six of her specialists see her right there, along with her case manager, her social worker, a nurse, a nutritionist, and the physical therapist. My mother was bed-bound when we began. After seven months, she could stroll with a walker and do some gardening." Helen Colbert began to smile and laugh again.
Another of the advantages is a reduction of medications, since most people come into PACE overloaded with eight or nine prescriptions from different specialists. "PACE got it down to three," Louis says.
The whole idea behind PACE is to keep seniors out of the hospital by addressing symptoms early and supporting and teaching the family caregivers. This approach saves health care costs and often restores the health of the seniors by providing one-stop shopping for medical care, social support, and physical therapy. It reduces the traumatic transitions between emergency rooms, hospitalizations, and nursing homes for rehabilitation.
But PACE only took care of Helen two days a week. Louis's sisters were still on stress overload, on duty 24/7 for the other five days. They sent out an SOS to the rest of the family warning they were getting ready to send Mom to a nursing home, full-time.
More on the Colbert family:
Part 1: Shock & Mobilization
Part 2: The New Normal
Part 3: How to Become a Fearless Caregiver
- Read journal
- Watch video
Part 4: I Can't Do This Anymore
Part 5: The Circle of Care
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