A Journey In Caregiving for a Mother with Alzheimer’s
Stephen Hoag, PhD, has worn many hats- from teacher, to innovator, to coach- for more than 35 years. Now, he is also an author of a new book entitled: A Son’s Handbook: Bringing up Mom with Alzheimer’s/Dementia. Dr. Hoag’s mother was already suffering from dementia when his dad passed away suddenly. He was immediately confronted with the question of what he could do for her, and in the end, he chose to become her caregiver.
We had the pleasure of speaking with him about his remarkable journey taking care of his mother, and the poignant philosophy he developed as her caregiver.
Becoming a Caregiver
“Just as it happens for many of the millions of people in America living with Alzheimer’s,” says Dr. Hoag, “for my mom, the disease came on suddenly.”
Hoag explains, “And for me, as with a lot of caregivers, it’s not something you plan for. When I came home and told my family that my Dad had died, one of my daughters looked at me and said, ‘Well, Daddy, life as you knew it just ended.'”
In those early stages, Hoag says he visited multiple homes that specialized in Alzheimer’s and dementia care, but that ultimately, he felt there was no choice but to say, “Okay, she’s mine. Let’s figure out a way to make this work.”
Writing A Son’s Handbook
In the world of Alzheimer’s and dementia, caregiver stress and burnout are stark realities. One way that Dr. Hoag worked through his stress was to journal faithfully.
“During the ten-plus years we were together in this,” he says, “every day I was writing about what we went through, just from the perspective of, okay, what can I learn from this.”
Hoag says, “Once I realized that my pragmatism was a deterrent more than anything else, I learned to entertain. Anything Mom saw me as, I played that character. She and Dad met in World War II, and when I was a boy her dream for me was to become an entertainer like they were—there wasn’t a day that went by that there wasn’t a song she wanted to show me. So taking care of her… was wild: Mom would see all these people as an audience and say, ‘You’re on next,’ so I’d take it away, singing and dancing with her and entertaining everyone.”
After his mom passed, they had a small, private funeral. Back at home, his wife and daughters went up to his prayer room and discovered volumes upon volumes of handwritten notebooks. “They came to me and said, ‘You gotta do something with this.’ And I didn’t wanna do it—I didn’t want to relive it. But that’s what the book is: it’s the synthesis of over five thousand pages of everyday journal entries.”
Reaching the Caregiver Community
“As I wrote it,” continues Hoag, “I would give parts to family members, telling them, look, do me a favor: talk me out of this. But every chapter, their words were: ‘I laughed out loud; I cried like hell.'”
Hoag explains, “One thing that’s come out of writing the book—and I didn’t know it—was that so many people are going through this.
There are some seminal moments that I believe anyone who’s a caregiver of any type for Alzheimer’s patient are going to experience. I hear from people who read it,” he says, “and what they say is, ‘You made me laugh, you made me cry. And I feel a little bit better now.'”
Lead with Love, and Other Tips for Caregivers
When we asked Dr. Hoag if he has any tips for caregivers currently going through this disease with their parents, he was modest. “Even in my professional life I try to minimize the times I give advice,” he said. Then he opened up:
“But the first thing to know is that this is a highly difficult moment. No matter what the relationship was between the parent and child—whatever it was—this is going to be extremely challenging because it is not logical. There’s no way to deal with it rationally or directly. You don’t reason it out. What I’ve said to so many people is: we always must lead with our love.
“Here’s your mother or your father. You walk into the room and they’re covered in their own defecation. Not like they just had an accident—they’re covered in it. And they don’t know. And they don’t care. It strips out your intellect. When there’s no other option, when there’s no Ghostbusters to call, when you are it, when you’re carrying her into the bathroom and she’s kicking and screaming—she’s in the middle of a hallucination and you’re the kidnapper—and you end up in the tub with her because that’s the only way to hold her down and get her clean, that is when you lead with love. And if on another day Mom thought I was her boyfriend from high school, that’s who I became. Lead with your love. Always.”
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