Memory Loss and the Melody of Alzheimer’s

Memory Loss and the Melody of Alzheimer’s

One of the things we love most about our recent move from CT to NC is the time we are able to spend with our grandchildren. Last weekend was full of grandkid sporting activities which included driving our granddaughter to her volleyball game. When she got in the car, however, she was very quiet and it was clear that she was having a tough day. When asked if she wanted some music on the radio she nodded “yes”, and we began scrolling through radio stations. We assumed she’d want a station that had a pre-teen, top 40 pop sounding vibe and, when she said, “Stop, that’s good,” we thought we had it. Interestingly, the station wasn’t playing pop – it was Gospel music – a genre that was completely unfamiliar to her. What grabbed our granddaughter wasn’t the lyrics of the song we landed on as they were not recognizable nor understandable. What drew her was the melody. It was as if something in the melody spoke to her saying, “I’m your one,” and led to a brightening of her spirit and a renewed energy.

For most of us, it is usually the melody of a song, not the lyrics, that draws us in the first time we hear it. In addition, while lyrics are easily forgotten, the melody of a song remains with us over the decades. Tom, for example, has been a fan of Bruce Springsteen and the E Street Band since his childhood growing up in NJ and has looked forward to the biopic film release this week of Deliver Me from Nowhere that centers on Springsteen’s Nebraska album from the early 1980s. Tom has loved getting reacquainted with the songs from that record but found that while he’d forgotten a lot of the lyrics, the melodies remained very recognizable. While lyrics can fade from our memories, melodies remain in our hearts.

As we honor caregivers this November in celebrating Family Caregiver Month and National Alzheimer’s Disease Awareness Month, we can actually use this interplay between lyrics and melody in helping to manage the stress and emotions that come with caring for a loved one living with Alzheimer’s disease or other dementias. Over our years of caring for Donna’s Mom, we found this analogy to be particularly useful in two areas:

            1. Coping with the heartbreak of a loved one’s declining memory.

            2. Responding effectively to a loved one’s emotions, resistance and agitation.

Coping with the heartbreak of a loved one’s declining memory. One of the saddest dimensions of caring for Donna’s Mom was her loss of memory over her years with Alzheimer’s. Initially she struggled with short-term memory loss reflected in things like forgetting where she put pieces of jewelry. In later years, the greater heartbreak was her forgetting the lyrics of her life story such the experiences she shared with our family and the identities of family and friends. As these lyrics faded, however, melodies remained. While she may have forgotten our names and how we were related to her, she never forgot that our presence was important to her. Whenever any of us walked into her room, for example, she would usually smile and welcome us. She would save her brightest smiles for children and, especially, her grandchildren.  

What became clear was that, like an old Springsteen song, a meaningful melody of relationships remained in her heart even after she had forgotten the lyrics of our identities. That melody had a powerful meaning for her as she still felt the reverberating rhythm of love, care, safety and security that had been laid down on the tracks of her heart over a lifetime of experience. This was very reassuring for us and helped to reaffirm that although her declining cognitive and physical abilities changed how she interacted with us, the disease never was able to remove her identity and dignity as a person. In turn, this helped us to still find meaning in the time we spent with her and helped us to bear the sadness of not being able to talk and interact with her the ways we had in the past. Focusing on the melody instead of the lyrics helps any caregiver to bear the stress and losses of caregiving more effectively.

Responding effectively to a loved one’s emotions, resistance and agitation. The second benefit of focusing on the melody of caregiving vs. the lyrics is how it can help us to be a calming presence with our loved ones. When they become emotionally upset and express anger, sadness, or fear through resistance or agitation we have a choice for how we will respond to them. There were many times, for example, when Mom would be in a frustrated or agitated state and we would respond with frustration and agitation of our own. It would be a duet gone bad where we would tell her why she shouldn’t be feeling the way she was feeling, shouldn’t be doing what she was doing, or shouldn’t be believing something that was delusional. Needless to say, those were the wrong lyrics to be singing to a melody that included angry facial expressions and defensive body language. Moments like these usually led to her increasing agitation and a very difficult time together.

At other times, regardless of what melody Mom led with, we tried to intentionally keep the beat of a calm and gentle rhythm that communicated no matter what she was experiencing, our melody was still one of love, care, safety and security. One time Mom became very upset when she thought that we were selling our house and would move away from her. Donna responded with a melody that calmly received her worry, sat down across from her, looked in her eyes, held her hands, reflected that she understood her fears, and then quietly provided reassurance that she was loved and that we would not leave her. This melody was calming for Mom, even if she may have had trouble understanding Donna’s words.

If you are a caregiver, you have likely experienced the difference that your emotional melodies make in the lives of your loved one. Sometimes just that soft tone of voice, light touch or smile can help a loved one calm down and shift gears leading to more productive interactions. Entering into their reality meets them where they are and reinforces that they are loved, safe, and not alone.

Seeking a melody of support from others. If you are one of the estimated 11 million caregivers in the US that we honor this month, you also know how hard it can be to keep your melody a calm and gentle one! That is why it is so important to use available resources that can support you in caring not just for your loved one, but also in caring for yourself. This includes learning to build skills within yourself that lead to an improved ability to manage stress and maintain an effective care partner melody. You deserve such support and can access wonderful caregiver supports on local and national levels. Many of these resources are listed on our Caregiver Resources page at tomanddonnafinn.com and in our book A Caregiver’s Well-Being: How to Master Stress and Find Balance While Caring for a Loved One with Dementia.

In the end, as you face the challenges of being a family caregiver and continue to write the songs of your caregiving album, remember that

            Lyrics can fade from our memories, but melodies remain ever in our hearts.