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Musical Memories

By: Emily Wisner

“Mom’s diagnosis of Alzheimer’s was not a surprise because her mother had it, but it was scary because we knew what the progression and end result would be,” said Mary Stallings. Mary’s mother lived for 12 years with Alzheimer’s with plenty of challenges along the way including a cancer diagnosis, pneumonia, hospice care, as well as the memory loss that is the defining symptom of Alzheimer’s. Through all of this, Mary was able to maintain a very positive mindset and find joy during every visit with her mother. “It was sad, but Mom didn’t sign up for this rodeo,” she said. “It was what she was dealt, and we would all cope with it together.”

In the beginning, Mary’s parents were living in Arizona. “I think Dad knew [her memory was lapsing], but he didn’t want to admit that something was wrong,” she said. They decided it was best to move her parents to Chicago to be near Mary and her siblings. Her parents moved into an assisted living facility, and her mother was very independent at first. “We would visit Mom and play games with her, take her out and have dinner, and enjoy our time together,” Mary said. “She loved the entertainment that would come in [to the facility] and the dances they would have. Mom was always one to enjoy a good party and dancing.” 

Her mother’s ability to live independently soon started to decline, as was expected. “She was falling, she had left her electric stove on, and simple games that we played with her became a challenge,” Mary said. The assisted living community didn’t offer Medicaid subsidized beds, so they moved her to a memory care facility. The new facility had three neighborhoods, A, B, and C. She started in the C neighborhood, but eventually moved to B and then A. “She would be tested on her memory ability and we would hope that she would have all the ‘right’ answers so they wouldn’t mark her as digressing, but that was wishful thinking,” said Mary.

Her mother’s memory continued to change, but Mary always adapted. “At one point, she said that she didn’t want us to visit because we would ask her questions, and she didn’t have the words to answer them,” said Mary. “I realized I had to change my way of speaking. Instead of ‘How are you today Mom?’ I would say ‘I heard you are having a great day.’ It is a hard thing to retrain yourself to not ask questions, but things had to be on Mom’s terms. We wanted positive visits, not frustrating ones.”

“As we were preparing to take her out one night, she asked me if I was her relative⁠—that hit me hard,” Mary said. “I knew at that point, she would not remember my name, and I had to make another adjustment. As sad as it was, I knew it was the disease and not Mom.” Mary and her family adjusted their visits accordingly. Instead of having regular conversation, they sang, recited nursery rhymes, went through old photos, and said prayers together. They were simple activities that she would be familiar with. “She still loved when the entertainers would come in,” Mary said. “She definitely loved her music.”

Although Mary was adapting to her mother’s needs, the visits were still frustrating as she watched the Alzheimer’s progress. “When I took a step back and looked at the frustrations, I realized they were more on my end, and I knew I could change my line of thinking and presenting my thoughts, and Mom couldn’t,” she said. “A positive mental attitude had to be first and foremost.” To make this change, Mary changed her perspective on her visits with her mother. “I decided instead of being frustrated, I was going to begin living in her world because she was no longer living in mine,” she said. “If we talked about family parties, and she wanted to make cookies for it, instead of telling her she couldn’t, I would ask what kind she was making knowing full well it wasn’t going to happen. There is not a need to be right nor argue.”

Still, there were difficult days as the nurses and aids told Mary all of the abilities her mother was losing. “It was like getting a negative school report on your kids at conference time,” she said. “You want to scream and tell them they are wrong, that she is fine, but in the back of your mind, you know it is true.” At one point, her mother was in the hospital, and the nurses kept asking her where her pain was and how she was feeling. “She was becoming non-verbal at that point,” said Mary. “It was frustrating telling them that she could not describe what hurt because she couldn’t speak. One by one, they would come in and ask her the same question.”

After Mary’s mother fell ill with pneumonia, she was unable to walk. “It was a very hard reality but we chose to make the best of it,” said Mary. “We asked that Mom be brought out for the entertainers even though she wouldn’t participate much. Having the music surround her was soothing for her and us.” Mary and her family found support within the other families around them. They would share memories and have meals together. “We would enjoy the time we had, and we made the best of our visits,” she said. “Every day was a gift. There are things you never realized you would do if not for the Alzheimer’s—holding Mom’s hand and praying, feeding her, stroking her face in comfort, combing her hair, wiping her face, singing to her—simple things that meant the most at that time.”

Her mother’s journey ended on Christmas Eve 2017. “How appropriate she passed away on Christmas Eve as that was her favorite holiday, and she was strong in her faith,” Mary said. “Jesus got the best birthday gift that year. The gift of Mom.” Her mother retained her upbeat personality throughout her journey. “She brought joy and happiness despite the Alzheimer’s,” Mary said. “Mom’s journey strengthened our faith, taught us patience and understanding, and taught us the true meaning of unconditional love.”

Although her mother’s journey has ended, Alzheimer’s is still a big part of Mary’s life. She volunteers as a community educator to teach people more about Alzheimer’s and share her mother’s story. Mary said, “I volunteer to help educate people on the disease, so they better understand it and are not afraid of it, and so they know that the person they love is still there but in a different way.” Education is what helped Mary through her mother’s journey, and she wants to share that with others. “I went to various Alzheimer’s presentations and conferences to educate myself,” she said. “Getting educated on the disease and talking with people who had the disease really helped.” In addition, Mary participates in the Walk to End Alzheimer’s every year. “The Alzheimer’s Association helped educate me and let me know I have a place and people to turn to when I need them,” she said. “I walk for Mom, Grandma and all others affected with Alzheimer’s in the hopes of raising enough funding to find a cure. I cry every time I walk, knowing I am not alone on this journey.”

Mary took many important lessons from her mother’s journey that she hopes will help others who have a loved one living with Alzheimer’s:

  1. “Don’t get angry with the person affected—it is the disease talking not them.”

  2. “Don’t abandon the one you love because you don’t like seeing them like they are. They did not chose Alzheimer’s, it chose them, and they still have the same heart, soul, and unconditional love.”

  3. “Find support in others, and the biggest thing is remember you are not alone.”

  4. “Do not talk ‘around’ your loved one, include them in conversations. Talk with them, not about them or at them.”

  5. “Understand that their behavior and forgetfulness is the disease, not the person.”

  6. “Take care of you, too. Don’t feel guilty for taking time out for you.”

  7. “Don’t be afraid to talk about the disease. It is real, and the more you talk about it, the better you will feel.”

Mary’s last piece of advice is, “Sing, sing, and sing some more. Music is powerful and can bring much joy.” Mary’s visits with her mother were always filled with music. It was a simple way to stay connected and bring happiness to them both. “Despite the negative news, we didn’t stop our visits or the music,” Mary said. “It only made us stronger in wanting to make Mom’s days the best that they could be.”



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