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Music and Loss

Are the musicians, poets, and artists within us the last to go?

Photo of Alyssa Frances Thompson

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When I was about 10 years old, my grandmother was diagnosed with Alzheimer's Disease. Over the next 10 years, it felt as if I watched her slowly die a hundred times. First, there was the death of the traveler. Then, the death of the typist, the reader, and the chef. And on and on it went. I met a new person every week. Alzheimer's makes this distinct and devastating. (Though it is a bit like this with all of us. As Alice in Wonderland says, "I knew who I was this morning, but I've changed a few times since then." I remember re-reading that in my 20s and thinking: Truth...)

Years later, I saw a documentary called Alive Inside. Have you seen this as well? You watch those seemingly trapped in this hell of disease, ill in care homes.. brighten, sing, move, and simply find so much joy in music.

Memories started pouring through my mind. My grandmother (and grandfather) loved a good rummage sale (and occasionally, dumpster dive). They put together some interesting outfits (an understatement!). She occasionally insisted on these until her death. She spoke more and more in poetic than in linear form. My grandmother as poet, artist, dancer, fashionista-in-her-own-way - well, those were certainly the last to die, weren't they? Perhaps those identities grew stronger while others fell away. Sometimes I think they really did. Would they have grown stronger still had I known how to support them? 

Now, I don't want to paint Alzheimer's, or any illness, as having any kind of 'bright side'. Watching those you love be torn in this way is sheer horror and that is all. I only wonder if a greater appreciation of the poetic, the musical, the artistic - that which best transcends the merely physical realm of our existence - within myself, might have helped. 

I spend some time each week now as a caregiver with a hospice in my home of San Francisco. I was sitting outside with a man who had a diagnosis of brain cancer. His thoughts were not linear, he couldn't remember much. I didn't want to try to "make conversation" for worry it might be a stress to him, but I did know from previous visits a bit of his story. Where he came from, how old he was, what he liked to do. We sat in silence. After a while, I took out my phone. 

"Would you like to listen to music?"


"Rolling Stones? Shall I put that on?"

He shrugged and then looked at me with a kind of mischievous grin.

"It's just a shot away."

I turned on my speaker and we listened to the stones for a few hours in the garden, while he mouthed along most of the words.

What is a provocation or insight that might inspire others during this challenge?

Could unlocking my inner artist now be a support at the time of my death?


Join the conversation:

Photo of Katherine


Thank you for sharing your story. I truly appreciate your final question- "can unlocking my inner artist NOW be a support at the time of my death?" It provides us the nudge to remember that personal expression is something that endures beyond many other elements of life.

My grandmother is currently experiencing the exact opposite health issue that your grandmother faced- her mind is sound and quite aware of her body failing her at every turn. She too has used music as her sanctuary. Every evening at 5pm she listens to her favorite music and sings along - Frank Sinatra, Barbara Streisand, and the rest of the gang. Without the ability to perform a multitude of physical activities, my grandmother (at the ripe old age of 87) can still feeeeel and express in a way that no one or any amount of time can take away from her. The concept is incredibly beautiful and humbling. 

Photo of Sue

Alyssa, this is beautiful, and it gets at the core of what's essential to our humanity. We launched My Last Soundtrack ( last year so people could create a playlist that tells the stories of their lives, particularly when viewed through the inevitability of their deaths. We know that music is powerful, and the idea that it's the arts within us that lasts strikes me as very true.  Also very interested in following and seeing the places where music (especially) plays a role in these end-of-life conversations.

Photo of Joanna

Sue - I have to encourage you to post mylastsoundtrack to our Ideas phase! What a beautiful idea. In the Ideas phase you can gather feedback on your effort and connect with others who may be able to help move it forward.

Photo of Sue

Thanks Joanna... will do today!  :)

Photo of Joanna

YAY :)

Photo of Morgan

Alyssa! What a remarkable share! Thank you so much for your contribution. Everyone's responses are so inspiring. 

As a Hospice and Palliative Care Nurse, I have seen firsthand the profound impact music can have at any point during one's life, but most certainly in illness and the dying process. We make it a priority to have music accessible to each of our patients on our Palliative Care Unit and have available to them a music therapist, instruments, iPads with multiple music stations, and volunteers. We even have concerts!

After watching Alive Inside, I decided to test out music therapy for my dementia patients. The results were staggering! Some of the people I was caring for, who were not very interactive or engaged, suddenly began to smile and sing at the sound of a song from an era long ago. When I listen to a song that I associate with a beautiful memory, I too, - in that moment - become completely enraptured. What a great feeling and way to connect others with their most cherished times. So cool. 

It's so evident the joy and meaning that music can bring into someone's life. It truly is a form of therapy and can be an avenue of healing. Especially for those who are unable to speak or articulate their emotions, music and other art therapy can provide that person with an outlet for their experience. 

And I love that you recommended the Rolling Stones! :) Thanks again! 

Photo of Ned

I feel this connection is something that is integral to the unique & necessary power of the shows I do here in SF, You're Going to Die -> ... A place to gather & share, in an open mic format, but the music people play, the music I curate is ESSENTIAL to how the night olds us. Perhaps this musical arrival to the conversation helps us open up. It's possible music was a way we communed before we could speak & I wonder if this part of our evolution as a human race is called forth  with powerful potential at the end of life, the end of identity. Have you seen I'll be me []? Thanks for sharing this... I'm VERY interested in where the arts can intersect with the death & dying conversation.

Photo of Alyssa

Thank you so much, Ned. I am so grateful for all the work you've done creating space for conversations around death. I haven't see I'll Be Me, but have heard great things about it and will be sure to watch. 

Photo of Shane

Wow what a beautiful story Alyssa. When I read this I instantly remembered my grandpa. He had altizmers towards the end of his life, but he always seemed to be more in the moment when a Chinese opera was playing in the background. You also reminded me of Brad Wolfe 's post about the song he wrote for his dear friend Sara: Sara's Got A Sunbeam It's wonderful thought to imagine how music and art can become the medium loved ones use to celebrate the chapters in their lives:)

Photo of Alyssa

Thank you so much, Shane. I'm about to check out Brad's song... :)

Photo of Brad

Amazing post alyssa! i want to create impact around this, as i think your provocation is very powerful.

Photo of Brad

Amazing post alyssa! i want to create impact around this, as i think your provocation is very powerful.

Photo of Alyssa

Thanks so much :) Would love to contribute.

Photo of OpenIDEO

Congrats on this being today's Featured Contribution!

Photo of Chris

Hi Alyssa, thank you for adding this.  My dad has vascular dementia and loved music when I was growing up.  I found that although he listened to music he really became alive when I played my guitar (beginners standard).  Reading further on this - it seems that music can connect to memories and emotions in a way that words cannot, and that many brain stem functions are intact when others fade - and so movement, singing and played music connect- it has been immensely moving to find this connection.  Thank you. Chris

Photo of Alyssa

Thank you for your comment, Chris. I completely agree and am so glad to learn more about this connection now. I am also interested in how poetry - language that can more fully capture the mysterious and non-linear - can support us all in communicating and understanding our memories and emotions.

Photo of Chiara

Thanks Alyssa for sharing your story. My grandad died last year, after more than 10 years after he was diagnosed with Alzheimer's. The fading of the identities is truly a touching image; it represents precisely the happenings during the development of this disease. My grandad sadly didn't have many identities left in his last years, though he could always remember my grandmum's name. He could not remember how to eat, or walk, anything, but he called for my grandmother until one week before he died. I think even though these experiences are incredibly painful, we do find in any that little piece of something that is able to make us smile.