Singer and songwriter Amy Grant shares how she and her family are learning to live with her father's Alzheimer's disease.
Alzheimer’s disease steals the people we love, and like so many of us with aging parents, singer Amy Grant is fighting to hold on to her father.
My dad loved to sing and loved any meal that brought our family together. He loved boats and the beach and being outdoors. He loved God, and his prayers were filled with gratitude. He taught me how to spell my name in Morse code, to play pool and ping-pong, to bait a fish hook, but the important things he taught me were by his example. He was compassionate, caring and respectful. I never heard him say a negative word about another person. What a lesson that was.
Dad is 81 now. His once-brilliant mind has been ravaged by dementia. He doesn’t know my name. He rarely says two sentences in a row that make any sense. And yet without words he is still teaching me one of the most important lessons of all: how to trust God in the smallest moments, how to see that God is still present and working through all of us, even now, even on those days when I don’t understand a thing my father is saying except the word “beautiful.”
Dad was a respected radiation oncologist. He trained and taught at MD Anderson in Houston, Texas, and has spent most of his life in Nashville practicing at Vanderbilt, Nashville Memorial and St. Thomas hospitals. His main work was at Park View/Centennial, which opened the Sarah Cannon Cancer Center, named for one of his patients.
When I first started my singing career, people recognized my name because of his accomplishments. They would come up to me and say, “Your father is such a wonderful doctor. He treated my mother a couple of years ago and it made such a difference. He has a wonderful bedside manner. It gave us so much confidence and hope. We’ll never forget him.”
Today he doesn’t remember what happened an hour ago, let alone five minutes ago. He’ll launch into a nonsensical conversation with disjointed phrases and I’ll hold his hand, listening. He had a beautiful voice—still has—but he’s lost all the words to the hymns he taught me, the ones we sang together. Sometimes I’ll sing one to him and he’ll pick up the tune, but if I stop, he’s lost again, as if the notes just fall off the page.
“Why?” I’ve asked time and again, along with my three sisters. Why did this happen to this vibrant, intelligent, faith-filled man? Why did something like this happen to our mother too? There was no history of dementia in our family. Our grandparents didn’t suffer from it. We had no roadmap. Mom and Dad were both in their seventies when the first telltale signs appeared—a little forgetfulness, a little repetition. But wasn’t that normal with age? I forget things all the time. It can be a nagging fear if you don’t wrestle it to the ground.
With Dad the confusion grew worse, then the erosion of cognition. I was visiting my parents late one evening on a break during a concert tour. My mom was wrapped up in a robe, a blanket around her feet. There was sweetness in our time together. I stood up. “Mom, I’ve got to go and get on the bus. They’re waiting for me.”
“Are you going somewhere?” she asked.
“Yes, I have a concert in Detroit tomorrow night. A reunion tour with my old friend Michael W. Smith.”
“Oh, you sing?” she said with a curious smile. “What kind of songs?” I swallowed the lump in my throat, overcome by the memories of all the songs I had played just for her. “Would you sing something for me now?” she asked wistfully.
I started in on “Revive Us Again,” one of her favorite hymns. Halfway through I stopped, asking if she remembered it.
“No,” she said, “but I love it. Keep going.” I did until it was time to get on the bus. “Can I go on the bus with you? Can I come too?” she asked.
“Not this time, Mom, but I’ll be back.” I kissed her good-bye and held it together until she was out of my sight.
Mom had a type of dementia known as Louie Body, which involved confusion and altered realities. The good news was that it was not a constant condition, which allowed us to connect with her on good days. But Dad’s dementia became completely debilitating. His vocabulary disappeared. Even familiar objects he couldn’t name—a telephone, a seat belt, a fork.
My sisters, Kathy, Mimi, Carol, and I have become a team, meeting with doctors and hiring caregivers (thank you, Dad, for all of your careful financial planning). Communication has been vital. My advice to every family going through this is to talk honestly with each other. The first elephant in the room was quietly retiring my dad’s medical license and then not letting him drive. My sister Mimi and her husband, Jerry, moved in with Mom and Dad for a year, but they both work full-time so we still needed caregivers. We also had to explain things to Dad.
The time came when we knew it was in our parents’ best interest for them to sign papers giving us power of attorney and control of their affairs. On a day when they were having lunch with Walt, their trusted minister, my sisters and I joined them at the end of the meal with the necessary papers.
My father turned to Walt. “Is this the right thing?” he asked, holding the pen. My mother, sitting beside him with her papers asked, “Am I doing the right thing?
Walt’s got a voice so comforting it’s like thick caramel. “Can you see this loving family around you?” he said. “Can you see how they care? You poured love and respect into your daughters for a moment like this. You can trust them.”
This reversal of roles, caring for the ones who had been so capable, is not easy. We would adjust to one change, one new wrinkle in this long downward slide, and then there’d be something new, one more loss of function, and we’d regroup. 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 of my frustrations, my confusion, my guilt, my sense of loss, my anger. She listened patiently, offering suggestions, lessons 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. Day by day you will find the inspiration you need and you’ll see how God is present in each moment. Give yourself the freedom to laugh and cry.”
And then came the words that changed everything: “I know this is hard, but this will be the last great lesson you’ll learn from your parents.”
Mom’s health was clearly fading. Out of the blue came the idea to bring her to our house to live with us. Mom moved into my daughter Millie’s room for the last three weeks of her life. I don’t think we locked our front door that whole time. People kept coming and going, nurses, hospice workers, my sisters, their husbands, the grandchildren, friends. Anytime day or night, we could go sit with her, sing songs to her, hold her hand.
A few days before she died, another inspiration hit me. We should have a girls’ night in, I thought. Now. I called my sisters and said, “Come over tonight. Bring ten phrases with you, things that will trigger a memory. Don’t write down the whole story. The phrase should be enough to remind you of it.” Even though I’m the youngest, I can be bossy!
For three and half hours we sat around Mom’s bed and told stories. She never opened her eyes, but her breathing slowed as if she was hearing every word. “Mom, this is how we remember you,” we said. “This is how you showed us your love. These are the stories we tell each other and we’ll tell the grandkids and great-grandkids. This was the difference you made in our life.”
Kathy, Mimi, Carol and I had that precious time with Mom and with each other. The next morning when the hospice nurse stopped by to check on Mom, she said, “Your mom is in transition.” In less than 24 hours she was gone.
Recently I found an old video I had taken of Mom and Dad. I asked my mother three things she loved about Dad. She said, “His smile, his laugh, his voice.” When I asked my dad what three things he loved about Mom, he broke down and said, “I never want to live one day without her.”
These days my father lives in a one-bedroom apartment with round-the-clock care. It’s working and we’re very grateful to the people who are helping us, but I have to remind myself, it’s only for now. Each day brings new challenges, each day is different.
Not long ago I took Dad for a walk on the farm. We’ve got an old log cabin in the back and I took him inside, made a fire and we sat there like two kids on a camp-out.
“Beautiful,” he said, one of his few words these days, at least one of the few I can understand. I guess if you are going to hang on to a short list of words, beautiful is a good one.
When we were through, we went outside, stood there, arm in arm, totally present, letting a warm late winter sun bathe us. “Beautiful,” my father said. I couldn’t agree more.