Alzheimer’s advocate writes book honoring father: ‘Sharing my story is a superpower’
Brandon Burke is the caregiver for his father, Gary, who was diagnosed with Alzheimer's disease in 2015
Brandon Burke is in the prime of his life, but Alzheimer’s has gripped his daily existence as he’s assumed the role of caregiver for his father, Gary, who’s been stricken by the disease.
November is Alzheimer’s Awareness Month, which creates a heightened awareness of the 5.8 million Americans living with the affliction that attacks memory and motor skills, such as eating and walking. African Americans are disproportionately impacted by the disease, with 43.7% developing dementia, and tend to be diagnosed at the devastating later stages, according to research.
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For Burke, author of the just released Rediscovering Dad and Discovering Myself: A Journey Through the Impact of Alzheimer’s, the statistics are more than just numbers. It’s been a lived experience as many members of his family were diagnosed, including maternal grandmother and great grandmother, before his father became ill in 2015.
“It’s a familial thing. And growing up, I watched my aunt take care of my grandmother. I kind of had a peripheral view of what caregiving was. What I realized when my dad was diagnosed with that, it’s so much more than just what I have been exposed to as far, you know, personal care,” Burke shares in an interview with theGrio.
“But there’s also financial things and all the other things that come along with caregiving and dealing with someone who doesn’t have the capacity to really take care of themselves in all aspects of their life.”
He adds another aspect that is there but often unspoken.
“It’s also a very can be a very lonely kind of experience,” Burke continues.
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“So, I wanted people to know that there were other people out there like them who are going through the same thing. And it’s not necessarily the people that we see every day.”
Burke’s tome chronicles the changes he witnessed in Gary, 64, including confusing him for his brother and forgetting routes to well-traveled places.
“When you start seeing people do things that are out of their character, I think that you have to really pay attention to and not just waiting for memory loss,” he says.
Burke details how the good and bad days segue into one another. Gary now lives in an assisted living care facility and his son visits multiple times a week. COVID-19 and wearing masks has made the challenge of caring for his father even greater.
“He still knows who I am. He recognizes my face. He has aphasia, so he can’t speak very well. He’s not able to say my name, but he knows that it is me at this moment. And there are times when I think that, you know, a lot of times with Alzheimer’s patients, especially in later stages, they deal with psychosis,” he explains.
“And so I think that being that we’re in COVID and stuff like that, and you have to have wear masks, that [can change] how he perceives you. So I try to like, pull my mask down very briefly so he can kind of see my face and recognize who I am so that it doesn’t scare him or make him think that I’m someone else.”
Burke is in his 30s and does internal web communications. He couldn’t sleep one night and starting writing about the past five years. It led to his book, which also takes into account how those like him, who serve as caregivers, need care as well.
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“There can be a lot of guilt and resentment and things that can build up if you let it. You know, I think that it’s important to try to find ways to destress. You know, the things that you may want to do in your life when you feel like, you know, you can’t do them now because you have to [take care] of the person,” he expresses.
“Even something as simple as going on vacation for a week or three days can feel like an arduous task because you want to know who’s going to help take care of your loved one while you’re not around. I think that finding ways to still care for yourself and also asking for help are very important.”
Burke and his father attended Walk to End Alzheimer’s in years past. Even though the disease has left the elder unable to participate or speak, Burke knows that he’d be supportive of Rediscovering Dad and Discovering Myself. The author wants more of a conversation taking place, especially in the Black community.
“We don’t talk about mental health issues. We keep our family secrets to ourselves and I think that’s the thing that we passed down through generations,” he muses.
“I feel like it’s something that needs to be broken. Sharing my story is empowering. I say that I know sharing my story is a superpower because we can help save someone else’s life.”
Rediscovering Dad and Discovering Myself: A Journey Through the Impact of Alzheimer’s can be purchased here.
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