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enise Benner didn’t expect to write a book about caregiving. Then again, she didn’t expect to be caring for two parents suffering from dementia for nearly a decade.
But that’s the situation she found herself in nearly 10 years ago when her father was initially diagnosed with Alzheimer’s.
“My parents are 92 and 94 years old,” Benner, an Ohio native now living in South Carolina, said in a recent phone conversation with Caregiving Chronicles. “When my dad was 85 he was diagnosed with Alzheimer’s. I believe he was misdiagnosed because I took him to a memory specialist and he said, ‘You do not have Alzheimer’s. You just have age-related dementia. And I want you to go on and live your life as it is’ But when he heard ‘Alzheimer’s’ that was it. He was a self-made man. He and my mom had a real nice lifestyle. But he just gave up. He just kind of shut himself in.
“I’ve been dealing with this going on almost 10 years,” Benner added. “And then my mom started showing signs of dementia. So I started going to a support group.”
The support group meetings didn’t just help Benner navigate the challenging word of dementia care. They sparked an idea.
“Our stories always seemed the same,” Benner said of her fellow support group members. “And I would joke that there’s got to be a book for this. There are some people that can’t go to support groups, so there’s got to be a book for this. That was when I just thought, ‘You know what, I’m going to do this.’”
Benner did, and the result was You Are Not Alone (Even If You Think You Are): A Little Book of Stories, Support and Advice through the Journey of Dementia Care, which was published earlier this year.
Benner augmented her own experiences by interviewing scores of fellow caregivers. She wrote to the Alzheimer’s Association and received permission to attend other support groups, created a flyer explaining her mission and conducted interview in person, over the phone and via email with others caring for loved ones with Alzheimer’s or other forms of dementia.
“I wanted to get different people’s experiences and stories and compile them into different chapters of the book,” Benner said. “I got quite a few volunteers. Some were reluctant to talk because they were ashamed, but once they started hearing what I had to say they opened up. What you find out from being in different support groups is that you find out that you really aren’t alone, which is the name of the book – You Aren’t Alone (Even if You Think You Are).”
Benner organized the book into short, topic-themed chapters such as “Denial,” “Anger,” and “Grieving.” Each chapter consists of a short introduction, then a series of stories from caregivers discussing their own experiences. All of the stories in the book are real, with only the names changed for privacy.
The book is short. The paperback checks in at just 71 pages. And that’s by design. Brevity isn’t just the soul of wit; it’s also vital to harried caregivers already faced with far too many demands on their time.
“One of the requests I kept getting was, ‘Don’t make this a long book, because every time we get these books they’re too long and we don’t have time to read them,’” Benner said. “So I thought, OK, it’s going to be a short little book. It can be read in about an hour or an hour and a half.”
The short length doesn’t mean the book can’t have a big impact.
“I’ve had different caregivers read it, and one person said, ‘Gosh, I needed this a long time ago.’ It’s telling true stories and heartfelt stories,” Benner said.
“A lot of people I’ve encountered don’t know that there are support groups out there,” Benner added. “So it’s also kind of like if you don’t have a support group, this is a little bit of a support group in a book. And you can kind of find yourself in there and realize, ‘Gosh, there’s other people going through this too.’ They can kind of just read this book and say, ‘I’m not the only one out here.’ There are other people that have these same stories, but sometimes you just get overwhelmed and you feel like, ‘Oh my gosh, I’m just by myself, what can I do?’ So that’s why I compiled these stories and thought I could help either the caregiver or the person who’s not doing the caregiving.”
While caregivers will recognize the experiences described in the book, Benner hopes the friends and relatives less directly involved in the care will also read the book and gain a better appreciation for everything caregivers do.
“People will say ‘I understand,’ but they don’t understand, unless they are really going through it,” Benner said. “One of the purposes of the book too was for maybe those people that may know somebody in their family (with Alzheimer’s) that is a distant relative or lives too far away, but here, read this book and you can maybe see what I’m going through.”
Benner’s book can be ordered online in both paperback and ebook form.