Family matters to Personal Care Assistants

Siran Bogan speaks in such a quiet voice it is often difficult to understand him. He is unable to walk or feed himself, and except for shadows, he has lost his sight. The nearly 40-year-old man has an undergraduate chemistry degree, but now spends much of his time in bed due to the crippling effects of multiple sclerosis (MS). “He needs total care,” said his mother Clara Nakumbe.

“I have a problem with people thinking this is just babysitting," she explained. It takes two people to shower Siran and someone must turn him in bed to prevent bed sores. Nakumbe and her youngest son, Shmel Bogan, take on the main responsibilities of caring for Siran’s physical needs. A granddaughter-in-law fills in when needed, and a daughter takes care of the paperwork and financial responsibilities. “If it wasn’t for the three of us who said we want him to stay home, it would be impossible. It’s a family thing that we do,” Nakumbe explained. She has been caring for her son for eight to 10 years.

Clara Nakumbe, her son, and granddaughter-in-law receive payment for 11 hours of work a day as personal care assistants (PCAs) to care for Siran. Generally, Shmel completes 6 hours of care while Clara is paid for 5 hours of care. She also primarily takes care of the other 13 hours in a day. “Someone has to be here with him. He’s 100 percent vulnerable,” said Clara. After her son was diagnosed with MS just a few years after graduating from college, she quit what she described as her lucrative daycare business in order to care for him. 

The payment Clara Nakumbe receives as a PCA allows her to keep a home for both herself and her son. She pays for a mortgage, personal health care, and other bills with her paycheck. "How will I manage on less?" she asked. PCAs who care for a family member faced a 20 percent wage cut that was ruled unconsitutional at the end of 2012. The Minnesota Department of Human Services (DHS) has said that they will not appeal the decision.

To become a PCA, individuals have to pass a background check and enroll with the state in Minnesota Health Care Programs, said a DHS spokesperson. Some agencies also require individual PCAs to participate in training and certification, explained Sheila Grisim, director of home and community supports at Fraser.

Daniel Jeske became a PCA almost by accident when a friend needed help about a year and half ago. He  is employed through St. David’s Center for Child and Family Development and now works five nights a week with a family that has three children with disabilities related to fetal alcohol syndrome. “It’s like being another parent,” Jeske said. He described some of his daily tasks as helping to prepare meals, dealing with fights, and helping the children with homework, baths, and bedtime. While the children can become pretty aggressive, he said that he mostly finds the job rewarding because he is a part of shaping their lives. “I’m almost part of the family now,” he said.

Alison Stameaugh, another PCA with St. David’s Center, agreed. “You become part of the family if you work with them long enough,” she said. Stameaugh has worked with multiple families and their children, who had such diagnoses as autism, ADHD, and bipolar disorder. She said that she often takes kids to and from their therapy appointments, implements therapy techniques at their home, helps with homework, and plays games.  She noted that she interacts not just with the children, but with the entire family.

Jennifer Daulman wasn't quite sure what a PCA did when she first heard about the job as a college student. That was six years ago, and even though she has obtained a full time job, she continues to work for a family one night a week. She use to be at the home three to four nights a week. "I’ve been working with the same girl and her family. I love them so much. I’m thankful I got matched up with them," Daulman said. With the consistency, she feels that she has come to better know the family and their child. “I’ve really invested a lot of time in investing [in] a relationship and communication. That has been my focus and it really has paid off," Daulman said. 

Nakumbe was not prepared to become a PCA until the day she found her son in the shower, unable to get up. No one else in her family has MS. “We didn’t know this was going to happen to our family,” she said. It’s hard for her to see her son in the condition that he is in, but she also believes that having the family around him helps him stay in good spirits. They take him on outings to the mall, the movies, and other places. She reminds Siran, “At least you have people who love you caring for you.”

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