Stefanie O’Keefe would like to raise awareness about Alzheimer’s disease in her community. For the past month, she has been working on a memoir retelling her experience as a caregiver.
She said personal stories can bolster the literature on mental health.
“I just want to talk about those struggles,” O’Keefe said, “to help people who will be going through it. Alzheimer’s is picking up, and there are a lot more people experiencing it. I knew a lot of people whose grandparents had it, but you experience it differently as the main caregiver.”
O’Keefe has looked after her mother, who suffers from posterior cortical atrophy, for five years. She said the majority of her knowledge has come from first-hand experience.
“I’ve learned so much about Alzheimer’s that I didn’t know,” O’Keefe said. “I just thought that people lost their memory, didn’t know anybody anymore and needed to go into a nursing home. But I didn’t realize that there’s medications, violence and anger.”
O’Keefe said she wishes more information existed for first-time caregivers.
When her mother started to encounter difficulty performing routine tasks in 2011 and 2012, O’Keefe began looking for insight because she knew something was wrong.
“She used to be a really good seamstress,” O’Keefe said. “She used to sew bridal dresses at Vera’s in Madison, yet she couldn’t do something really simple that I needed her to hem for me. And I remember thinking that was really strange.”
The literature she found on the topic was mostly science-based, O’Keefe said, and had been written by scientists and researchers. Personal stories were few and far between.
The void left her unprepared to care for a patient with Alzheimer’s disease.
“Literally overnight,” O’Keefe said, “she couldn’t be left alone. She needed 24-hour care…And as a caregiver, sometimes you can’t sleep because you’re so worried about their safety and all of that. It started to take a toll on me.”
O’Keefe reached out to the Alzheimer’s Association for assistance. The organization pointed her in the direction of resources that could help with her family’s situation, such as palliative care.
Her mother Kay has been receiving in-home hospice care for the past year and a half now.
“That’s one of the things that people need to be more educated about when they’re on this journey,” O’Keefe said, “because there are resources out there to help you people just don’t know about, unless they’ve gone through it.”
O’Keefe will participate in the Alzheimer’s Walk on Oct. 6 at James Madison Memorial High School. A release date for her memoir has not been set.