Amy Grant: The Heartfelt Story of Her Parents’ Dementia

For Amy Grant and her three sisters, the challenges and struggles that come when a parent suffers from dementia are all too familiar. In 2011 they lost their mother, Grace, who was diagnosed with Lewy Brody, the second most common type of progressive dementia after Alzheimer’s. Today their father, Burton, suffers from an even more debilitating form of memory loss. The six-time Grammy Award winner recently shared her thoughts about coming to terms with her parents’ dementia and the lessons learned along the way.

When did you first notice that something was different with your parents?
Amy: I was home for a visit in 2008. The change in both my parents was so pronounced that I called my manager immediately. I came off the road and stopped touring for a year just to get my bearings straight. My sisters and I just didn’t know how much time we had with our mom and dad.

What was your initial reaction?
Amy: I think like most people facing a similar situation, my first thought was “Why?” My sisters and I asked that question time and again. Why did this happen to our parents, two vibrant, intelligent, faith-filled people? There was no history of dementia in our family. Our grandparents didn’t suffer from it. It was a total shock. We had no roadmap. I was frustrated and confused. It was the lowest of the low.

So what did you do?
Amy: All my life I’ve asked God to lead me to where he needed me. Again and again he’s answered that prayer. But this time there were no easy answers. One night I opened up to a trusted friend, telling her my frustrations, my confusion, my guilt, my sense of loss, my anger. She listened patiently, offering suggestions she had learned in the process of losing her own parents. “Amy, this is going to be the greatest walk of faith you’ve ever had. You can’t see the whole picture now, but each day you’re going to have to trust God more than you ever have before.” Those words really taught me to embrace each moment with my parents, even when there is grief and uncertainty.

How is your dad today?
Amy: He’s 83 and lives in a one-bedroom apartment with round-the-clock care. He hasn’t known who I am for years. But that doesn’t keep him from giving my sisters and me so many life lessons.
A couple of years ago, I took Dad for a walk on the farm. We’ve got an old log cabin in the back. I took him inside, made a fire, and we sat there like two kids on a campout. Dad had only spoken a few words that I could understand that day. But then, looking at the fire, he simply said, “Beautiful.”  Later on, we went outside, stood there, arm in arm, letting a warm late winter sun bathe us. “Beautiful,” my father said again. I guess if you are going to hang on to a short list of words, beautiful is a good one.

What advice do you have for families who are dealing with dementia?
Amy: Everybody’s life situation is different. But here are a few tips our family has learned during our journey. First, let the words coming out of your mouth aim you in the direction of finding the good side. Instead of saying why is this happening to our parents, my sisters and I were able to turn a corner and framed the experience in a different way: “This is going to be the last great lesson we’re going to learn from our parents. Let’s make the most of it.” We chose not to see what was happening through the lens of regret; we are seeing it through the prism of life.

Second, support is so important. Find a community of people who really care about your loved one and share the responsibility with them. Surround yourself with people who believe that whatever is happening matters and who see the good coming from it.

Any final thoughts?
Amy: When a loved one has dementia, the journey is filled with a crazy combination of sadness and joy. But just remember—no matter how tough the situation seems, there is always something beautiful happening right before your eyes. My dad taught me that.

Caption: As the best-selling Christian music artist in history, Amy Grant has built a long and successful career by creating music that matters. Her 2013 album, “How Mercy Looks From Here,” is no exception. Many of the song lyrics were inspired by her mother, who died in 2011. Amy and her husband, Vince Gill, are actively involved in supporting organizations that help raise awareness about dementia.