Spotlight: Carol Bradley Bursack

Spotlight: Carol Bradley Bursack Advocacy: Author of the book, Minding our Elders published in 2005. Founder of: Minding Our Elders Web site. Blogs: Minding Our Elders Blogs, Our Alzheimer's Day job: Librarian, news researcher and elder care colunmist for The Forum, flaghsip newspaper of Forum Communications Company, and forum moderator for AgingCare.com.

What made you write your book?

I spent 10 years caring for my father, who had brain surgery to correct problems stemming from a World War II brain injury. He went into surgery a little foggy and came out totally demented. It was horrifying for the whole family, and suddenly I was into care giving up to my neck. This horrible experience pushed me to write about care giving and caregivers.

Over the past 20 years, I’ve also cared for other declining elders (six family members and a neighbor). My book tells my own stories, plus those of 20 other caregivers. People can find the one or two that resonate with them most, and revisit them during tough times.

Have you dealt with Alzheimer’s specifically?

I’ve coped with four different types of dementia, but not Alzheimer’s. My dive into Alzheimer’s came several years ago when I was asked to write about care giving for Our Alzheimer’s. I also write my column on AgingCare, and my blogs. During this time, I’ve read dozens of books on Alzheimer’s, interacted with Alzheimer’s patients and caregivers, and followed the many studies going on worldwide.

What motivates your writing?

The idea that sharing my experiences – as well as offering the newest tips and research possibilities – could help break the isolation caregivers often feel. There wasn’t much information during the time I spent care giving; it wasn’t the big deal it is now, so we were on our own. In fact, when I first tried to publish my book, I was told, “they love the book but no one’s interested in the subject.”

If I can help one caregiver stay healthy or help with a problem, that’s enough for me.

Also, writing is how I best process things. It’s a creative outlet and it’s been cathartic for me as a caregiver. I feel like it’s what I was born to do. People respond well to my words, which I often feel guided to write. I can’t imagine not writing.

What are you most proud of?

The many caregivers who tell me, “You’ll never know how many people you’ve helped.” That always flabbergasts me, because what I do just comes naturally. I want to help people – that’s always the goal.

What gives you hope?

Hope comes from connection and common good. Caregivers understand someone who’s been “in the trenches.” No specialty in the world can prepare people for family care giving.

What three things must new caregivers do immediately?

First, get educated. Contact the National Alzheimer’s Association or the Alzheimer’s Foundation of America and learn about redirecting and distracting, as well as how to validate your loved one’s reality whenever possible. It’s real to him.

Next, make plans with your loved one. Understand and learn his wishes. Don’t make promises – you don’t know the future and may not be able to deliver. Try to find out what he wants as far as housing, hospice help and death, and do your best to comply.

Third, remember your own needs. If you get sick, what would your loved one do? Find respite care and other outside resources so you can have a life beyond the illness.

What questions do people ask most often?

They ask: What can I expect? I give them material on the stages of Alzheimer’s, or whatever disease they are coping with, as well as links to materials to help them as caregivers. I include chat groups and forums they might find helpful as well.

They ask: How do I cope? I tell them support is essential and provide online resources and contacts for in-person help. I remind how important it is to talk to someone who understands.

They ask: Should I seek legal advice? I help them figure out what kind of attorney they might need to plan for the future. Things will always be changing and no two cases are alike. But a loose plan, plus correct legal work done early, will help a great deal.

What are your favorite health-related sites?

For general health issues: Health Central, WebMD and the NIH and my own of course!

I do work hard to provide comprehensive information, including links to valuable resources and access to hundreds of articles that I’ve written on caregiver and other health issues.

I don’t give health advice; I point people to the site, book or professional provider I think would best help them. And sometimes, the best thing people can do is communicate with someone who understands. That’s where I come in. I’m responsive to their private e-mails.

How should caregivers deal with guilt or unkind thoughts?

It’s natural to have unkind thoughts, especially when we’re tired or have no one to help. It’s important to remember that if you’re doing your best and getting help when you need it, you’re doing okay. No one is a perfect caregiver. We must accept our humanness. If you find yourself behaving negatively too often, though, you must get help.

What’s the best feedback you’ve received?

One woman told me she keeps my book on her nightstand to remind herself she’s not alone. Another caregiver takes my book along on clinic and hospital stays. Most people just send notes telling me how much I’ve helped.

Learn more about Carol.

Who inspires you? Let us know who we should feature in our next Spotlight Interview. Write us at community@wegohealth.com