A farm wife and lifelong South Dakotan, Cathleen was just 42 when her husband died, leaving her with nine children ages 2 to 18. "The fact that we lost Dad so early" meant Cathleen’s family has a long history of pulling together, says Julie Curry, the fourth child of the nine. Now that Cathleen is in her 80s and grappling with health issues, her children form her support network — with very little help from medical professionals.
Julie’s admiration is clear when she speaks about her mother’s life. On her own, Cathleen provided for her brood, putting them all through college. Since Cathleen’s youngest children left home nearly a quarter-century ago, "She’s been on her own," says Julie, who lives 200 miles away in Des Moines. Cathleen downsized to a smaller, one-story home, and stayed active in her small town and in her church.
About a dozen years ago, Cathleen felt the first symptoms of what doctors diagnosed as fibromyalgia, a condition whose cause is unknown and whose symptoms include joint and muscle pain and fatigue. Julie and her mother went to a Mayo Clinic training to learn more about the condition. "That was the start of us partnering to support her," Julie says now. The sibling support network became more formal, and more vital, a few years later when Cathleen received another diagnosis: Parkinson’s disease.
As the Parkinson’s would progress, "We knew Mom would need people to lean on," Julie says. Only one of Cathleen’s children lives near her in South Dakota; the rest are scattered from coast and coast and border to border across the United States. Julie, who works as a state coordinator for special-needs youngsters, found that background stood her in good stead as the family considered how to coordinate Cathleen’s care.
It takes all nine of them to manage their mother’s needs, says Julie. "The local brother and his wife are there for the emergencies and the house maintenance and checking in. The brother on the East Coast is her financial manager. A sister living in the Southwest flies up periodically to take her to the Struthers Parkinson’s Center for medical evaluations. A West Coast brother and his wife do the Medicare, all the paperwork and checking out the insurance plans. Another brother in the Midwest is the chaplain, looking after the spiritual component in all this, and the forecaster — it’s his job to think from six months to three years ahead, to plan for situations such as when she can’t remain in her home. Other siblings and their spouses, including some trained in nursing and nursing home care, contribute their expertise and emotional support. I’ve been the coordinator, helping identify what’s needed and who in the support team can address it."
The siblings also have built a team of local helpers for Cathleen, church and community friends as well as hired aides. These helpers visit at least twice a day, cook and clean up after meals, do yard work and home maintenance — "helping her do things she is less able to do," Julie says. The caregiving service also provides an on call nurse for assisting in health decisions. Thanks to all this effort, Cathleen still lives in her home, and has suffered a couple of falls in the past few years but is "otherwise pretty healthy," Julie says.
When Cathleen goes to the doctor, Julie says, "That’s been the most challenging part. The health care field does not encourage and support those providers who want to work together! Even if they do want to work together, because the current system isn’t designed around the patient, they are generally not reimbursed to work together." When Julie accompanied her mother to her longtime, primary-care physician, "I said to the doctor, 'You know, we’re really looking for somebody who will be kind of a medical home.'" But during the visit, Julie says, it became clear that the doctor — who Cathleen likes and trusts — wasn’t able to take on that kind of role.
So it falls to the siblings to broker communication and coordination among Cathleen’s doctors, a growing cadre of specialists to address high blood pressure, congestive heart failure and other issues as well as the Parkinson’s. To manage it all, the siblings set up a system of conference calls and online tools. For example, whichever relative or caregiver takes Cathleen to a doctor’s visit later posts a report from the visit on a Google Documents site that family members can access. That’s also where Cathleen’s medications list is posted and updated with every change so all siblings always have a current list.
Cathleen’s children, not her doctors, end up running interference when, for example, the medications for the Parkinson’s cause a dry mouth condition that means Cathleen loses teeth and needs more dental care. The siblings, with help from a visiting nurse, manage the monitoring, administration and refilling of medications that Cathleen must take at five different points in the day. That nurse also gets called "when something in Mom’s care isn’t working anymore and we don’t really know which doctor to call," Julie says.
Cathleen’s children will do whatever it takes to manage her care, Julie says: "This is our opportunity to pay back what she gave us. It’s our turn now to let her lean on us." But the family would welcome more help, Julie says, from the health care system.