On one ordinary school night, a 16-year-old Amy Grant was in her room, putting the finishing touches on her first original song, which she would later sing for the first time for an audience of one—her mother, Gloria.
"I picked her because she was always there for me—she made me feel comfortable," Amy recalls.
But a few decades later, the same woman who put Amy so at ease would no longer remember that her daughter sang at all, let alone recall the details of a storied career that encompassed six Grammy wins, multiple platinum-selling albums and the title of best-selling contemporary Christian music performer in history.
Growing Concerns, Cancelled Concerts
It was during a visit home in 2008 that Amy first recognized things weren't quite right with either of her parents.
Gloria was exhibiting extreme confusion, which would later reveal itself to be a symptom of Lewy Body dementia, while Amy's father, Burton, was making uncharacteristically bad financial decisions.
The singer cancelled her 2009 plans to help her father and three sisters—Carol, Mimi and Cathy—take care of Gloria. Two years later, once she had resumed performing, Amy and her mother had an especially profound exchange.
Amy was saying goodbye to her parents before embarking on a tour when her mother asked where she was going. When she heard her daughter was leaving to perform, Gloria replied with a simple, heart-wrenching question: "Oh, you sing?"
The memories of all the songs she'd played for her mother over the years coursing through her mind, Amy responded: "Yes ma'am, I do."
"Would you sing something for me?"
Amy lifted her voice, singing "Revive Us Again," a hymn beloved by Gloria. The older woman couldn't remember the song, but she enjoyed Amy's singing and asked to come with her. When Gloria realized she couldn't accompany her daughter, she offered one simple directive: "When you get on that stage, sing something that matters."
After assuring her mother that she would do exactly that, Amy managed to make it to the car before losing her composure. Gloria died two months later, in April of 2011.
Amy's recent album, "How Mercy Looks From Here,"is dedicated to the mother who continued to guide her, despite dementia. "At some point in life you realize that some things really matter and some things don't. Living matters. Celebrating life matters. Seeing the value in hard times matters. Relationships and people matter. Faith matters."
Like her songs, Amy's insights echo the unexpressed emotions of millions of men and women on caregiving journeys. "I think it goes back to why people become songwriters to begin with—we've always felt compelled to tell stories, or find a story in something. What you're really hoping for from a song is that someone is going to feel moved by it. You don't have to make up much when you're writing—there's so much inspiration in life."
Conquering the Great White Elephant
Communication is the main factor Amy cites when describing how her clan has managed to stay together while watching two much-loved family leaders decline into dementia.
In fact, it was an exchange with her daughter, Corrina, which enabled Amy to handle her own mother's inability to remember her singing career with such poise.
When Gloria was still alive, Amy came across Corrina one day, crying in the hallway. "I'm so scared that one day Grando won't remember who I am," sobbed the youngest of Gloria's 17 grandchildren.
Despite her daughter's youth, Amy knew that honesty was the appropriate approach. "I just sat her down and said, ‘When that day happens, remember that it has absolutely nothing to do with love—Grando loves you, she just needs your help. Remind her of who you are and tell her that you love to dance, you love to sing.' We walked through the whole scenario together."
A few months after that pivotal discussion, the whole family was gathered around the dinner table when Corrina's fear manifested itself. Gloria, a confused look on her face, started shifting her gaze between her daughter and her granddaughter. After a few moments, she leaned towards Amy, saying, "Who is that?" gesturing towards Corrina.
Amy turned to her daughter, saying simply, "This is the time we talked about."
Corrina gathered her courage, rose from her seat, went to stand next to Gloria and, much like her mother did all those years ago, began to sing a song meant for an audience of one—for Gloria. The tune wasn't one she'd written herself, but one she'd learned at school for Grandparent's Day.
"There are always going to be things we're afraid of," Amy remarks. "Sometimes we need to have someone tell us not to be afraid—we're going to handle it together. Our family made it a point to talk through these situations ahead of time, we didn't just wait for the white elephant to appear."
The Sisters Create a Caregiving Tag-Team
Faith and family keep Amy and her sisters together as they continue to look after their father, whose dementia has rapidly worsened in the wake of his wife's death.
Burton's impairment has advanced to the point where he speaks infrequently and can't remember his daughters' names; but, as a former Sunday school song leader, music still maintains the power to move him. Amy describes an instance where he sat down at the piano and began playing a perfect rendition of the Tennessee Waltz—an especially remarkable feat given that she didn't even realize he knew that song.
Burton took much of the financial burden of elder care off his daughters by purchasing long-term care insurance years ago. They have the means to hire in-home caregivers to assist with some daily tasks.
But the Grant sisters all take turns providing hands-on help for their father. "It goes in cycles," says Amy, who admits her current caregiving duties aren't as strenuous as some of her other siblings, mainly because she is the only one with a young child still living at home. "My sisters and I are committed to helping dad maintain his dignity, and we've each done some of the dirty work. Right now, so much of my dad's day-to-day care is falling on the heads of my sisters."
Caregiving challenges have caused both conflict and growth in the siblings' caregiving quartet.
"All I can say is there is a weird dynamic in every family. No two children are cared for in the same way by a parent. There's unspoken hurt and drastic differences in individual relationship dynamics. In the beginning, my sisters and I were a therapist's dream—the important thing was that we didn't walk away from each other. We prayed a lot. We let our guards down, and we tried to be respectful and caring, not just to our parents, but to each other as well."
Indeed, handling family conflicts while caregiving can be tricky. It took years for Gloria's daughters to be able to go through the things she'd left behind after she passed away. Just recently, the foursome gathered at a sister's house, prepared a big meal, and sat down to sort through the earrings, necklaces and bracelets that their mother—a former jeweler—had left to the family. As they exchanged fond memories of Gloria, Amy's brother-in-law poked his head in the room, an astonished look on his face, and said, "If I didn't know better, I'd think you guys were shooting craps together in here."
"We've come a long way," Amy admits. "Because of this whole process, we've left pettiness in the dust. I guess that's my take on all of the craziness that surrounds dementia and dying. There's so much to be gained by sharing things with other people who are as invested in caregiving as you are."
Communication and creativity are the two tools Amy brings to the caregiving table—a natural fit, given her songstress roots. "Whenever we had tough things we needed to talk to mom and dad about, my sisters would always say, ‘Amy, you go talk to them.' I think that's because they knew I was accustomed to singing and saying vulnerable things."
She admits that her background does help when it comes to talking about tricky caregiving issues. "It probably does give me sort of a decent toolkit to talk about things that are hard, because what you're really hoping for from a song is that someone is going to feel moved by it. You don't have to make up much when you're writing a song—there's so much inspiration in life. You just need to figure out a way to say things that are honest, simple and not posturing."
The Importance of Being Honest
Honesty, simplicity and vulnerability are three keys to effective communication that are so hard for so many caregivers.
The men and women who assume the selfless duties of taking care of a loved one are more wont to deny and bury their feelings, not wanting to share their burden with others, even though sharing stories and experiences with each other is a major way many caregivers find support.
Celebrities often shy away from speaking candidly about the difficulties in their lives, but Amy knows first-hand the invaluable impact that honest communication can have when one is going through a challenging life experience, a fact which has compelled her to share her stories with other caregivers.
"I have had the benefit of the companionship of my three sisters and close friends to talk through things with," she says. "Whatever you're going through in life, you tend to gravitate towards people who are going through the same things. You can't fix it, but you don't have to go through it alone."
"Threaten Me With Heaven" by Amy Grant and Vince Gill
What’s the worst thing that can happen if they say my time is through?
Can they take away the love or the years I've shared with you?
What’s the worst thing that can happen; what’s the worst that they can do?
Threaten me with Heaven, it’s all they can do.
Threaten me with heaven, if they want to.
Threaten me with Heaven, I believe that it’s true.
Threaten me with Heaven, I’ll be waiting on you.
Editor's Note: Amy Grant's father, Dr. Burton Grant, passed away in June 2018 after living with dementia for nearly 10 years.