An only child, Debbie Bozedowski was always close to her parents, so it was natural for them to live with her and her husband when they got older.
“I sold my townhouse and my parents sold their townhouse, and we had a house built,” Bozedowski said. “It was a big house in St. Charles with four bedrooms. They were going to buy a house in Florida and live with me in the summer.”
Six days after they moved in, her mother suffered a brain aneurysm and died nine months later. Her dad continued living with her and her husband for 10 years. A year ago, they moved to a smaller house in Elburn.
But during the past four years, Bozedowski’s father, Dominik Barca, 84, has developed dementia.
“I stepped up to the plate, but it’s harder now,” Bozedowski said. “My dad won’t wake up until I wake him up. He won’t eat unless I put it right in front of him. He always says, ‘I’m not hungry.’ I give him his meds. I pick out his clothes in the morning.”
Bozedowski said she has to make sure her father takes a shower.
“I kind of open the door and say, ‘Use soap.’ I have to remind him to use deodorant and after-shave, and did he brush his teeth,” she said. “It is just something I feel I have to do for my dad because I love him.”
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Bozedowski is one of the nation’s nearly 66 million caregivers who provide assistance to someone who is ill, disabled or elderly, according to the Family Caregiver Alliance National Center on Caregiving.
Five days a week, Bozedowski takes her father to Elderday Center in Batavia. He gets the structure, socialization and activities he needs, and she gets the breaks she needs.
“Without Elderday, he would do nothing,” she said.
Bozedowski’s employer allowed her to reduce her work schedule, so some days she works and other days she gets time to herself to regenerate and do self-care.
Taking care of one’s self is something caregivers often overlook, counselors say, and Bozedowski agrees. She said she spends so much energy focusing on her father’s needs, she skips her own, but she and her husband work on getting breaks to refresh.
“It takes a lot of patience [because] they don’t really understand what they’re doing to you,” Bozedowski said. “It’s like taking care of a little kid again. They go back to their childhood, but it’s harder because they’re bigger.”
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Elderday social worker Kathy Hanlon is a caregiver specialist who serves 400 Kane County caregivers each year through the Title IIIE Caregivers Counseling Services under the Older Americans Act.
She runs three caregiver support groups – two for Parkinson’s and one for spouses. She also provides free individual counseling for those caring for someone age 60 or older; the cost is covered by the state grant.
“The family members come, too,” Hanlon said. “It affects their whole family.”
Hanlon said the support groups help caregivers realize they’re not alone.
“When they come in here, it’s a combination of feeling frustration, confusion and anger because they are so frustrated and tired,” Hanlon said.
Fox Valley Volunteer Hospice in Geneva also provides caregiver support, said Christy Pitol, a social worker who serves as bereavement manager.
“We have evolved into a full-care hospice,” Pitol said. “We work with caregivers quite a bit.”
Pitol said hospice will start a caregiver support group in the spring.
In order to get respite for caregivers, Pitol said they turn to other family members – if possible – or paid help or an alternative.
“The means and resources might be there, but sometimes the problem gets solved in a different way,” she said.
The message she has for family, friends and neighbors is to offer to step up and help – go shopping, help with a mundane chore or offer to sit with the person so the caregiver can leave for a while.
In a hospice situation, the advent of a person’s mortality is frightening. But Pitol said it also is an opportunity for families to communicate.
“When something happens to change a family system, that is an opportunity to start talking about end-of-life planning,” Pitol said. “If we talk about it, we can hope for best and plan for worst.”
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Bozedowski said her father is eighth on a list to get into a dementia unit that accepts Medicaid. He has been on the list for a year.
“His neurologist says he’s ready,” Bozedowski said, tearing up. “But I’m not ready.”