SPRINGFIELD, Mo.–The day we can’t manage our own lives is one we hope never comes.
In Sunday night’s Courageous Conversation, KOLR10 explains what happens to those with Alzheimer’s who reach that point.
A doctor will determine once the person is incapacitated and needs someone else to control their daily affairs.
While it’s recommend this individual is chosen before incapacitation is reached, for many families, that’s not the case; therefore, the court system makes the decision.
“This is my parents at their wedding on April 7th of 1943. They got married in a friend’s house in St. Louis. It looks more like a church than a house,” says Barbara Burgess, former guardian for her parents.
Twenty-one years after George and Elizabeth Burgess said “I do”, they had their fourth child, Barbara. Her mother was 42-years-old when she gave birth to her in Springfield,
“My mother was a housekeeper, homemaker, awesome mom. Every morning she would read to me and play a game,” says Burgess.
Like most children, Bugress grew up and left the nest, only she made a permanent return on February 26, 1994.
“There was snow on the ground, I was living in Waynesville, Missouri, I jumped in my truck in a pair of shorts and a tank top, came home and I’ve been home ever since,” says Burgess.
When Burgess got the call her elderly mother had a stroke, she rushed home. Her arrival was the start of a long journey of taking care of her. Shortly after the stroke, she developed Alzheimer’s.
“She would do things like put butter on the windowsill and put the plants in the refrigerator,” says Burgess.
Years later, her father’s health took a turn for the worse. The once outgoing man suffered from depression then the same disease that overtook his wife.
“People would come over and they’d talk with him. He’d hold a conversation, they would leave, and he’d be like ‘who’s that?’ and he couldn’t remember any of the conversation that he’d just had. He could remember things from way back when, but couldn’t remember what happened five minutes ago,” says Burgess.
“The disease affects everyone individually. If you’ve met one person with Alzheimer’s disease, you’ve met one person with Alzheimer’s,” says Rob Hulsra, healthcare outreach coordinator for Alzheimer’s Association Greater Missouri Chapter.
Hulstra’s seen how the disease turns tasks we take for granted into overwhelming challenges.
“Remembering how to brush our teeth, how to get dressed, these become problematic as their mental condition declines as the disease progresses remembering how to eat, take medications,” says Hulstra.
Attorney, Deanna Scott says when the disease becomes that progressive, the court will determine who is best fit to take care of the person if it hasn’t been decided before they become incapacitated. They also monitor the guardian to ensure accountability.
“It could be a family member because often times family members are the ones most familiar with the person, but it doesn’t have to be. Also because of HIPPA Laws and restrictions, physicians can’t talk to you about someone else’s health so even though grandma might have Alzheimer’s, the physician can’t discuss the details of that with you so being a guardian permits the medical community to deal directly with you and you make those decisions,” says Scott.
“As a caregiver and a daughter watching that, the hardest part was not being able to do anything about it and to just watch that daily decline everyday getting worse and worse and worse. Losing weight, not wanting to eat, not remembering how to eat, then it came to the point I had to feed both of them too and dress them and bath them,” says Burgess.
Burgess cared for her mother for 14 years until her death at 86 in 2008. Her father passed away three years later at the age of 91. Burgess proved that being a guardian to parents with Alzheimer’s is not for the faint of heart, but says she’d do it all over again.
“I just knew in my heart I had to. They were such great parents to me that it was my turn to give back to them,” says Burgess.
Those with Alzheimer’s don’t relinquish all of their rights just because they’re under guardianship.
They can still vote, drive, and provide input on their needs if the court feels like they have the ability to do so.