Creating Art and Music: A Life-giving Blessing

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BY: Jackie Pfadt, Family Caregiver

CATEGORY: Grief and Loss; News and Community

​Mom was scared. Her disease was causing her to lose her autonomy. When you can no longer feed yourself, go to the bathroom alone or even raise a tissue to wipe tears from your eyes, having a say in your care matters. While she became trapped within her own body, Mom could still decide who she invited into her home. She welcomed Hospice of the Western Reserve into our family.

Living with a terminal illness is extremely stressful and heartbreaking.  But we as a family went “all-in” together.  We did so much. Hospice supported us in creating a care strategy to take care of Mom. Music and art therapy allowed us to create memories and works of art that we will cherish for the rest of our lives. My mom painted several paintings with the support of art therapist Holly Queen. My favorite is one she did of my cats, Axel and Maverick.  She gave this to my husband for his birthday. I love it.

My mom was a teacher. ALS was steadily taking away every physical capability within her life. Her world continued to get smaller and smaller as she lost more and more of her abilities. As her illness progressed, she was not able to create art projects herself anymore. So we became her arms and legs. She sat with us and instructed us on what to do. She cheered us on and encouraged us. She loved teaching. It gave her an avenue to continue to do that even when her body was no longer able.

Mom and I worked on her legacy book together. We wrote her story so that she could give it to her grandkids and so all of us would know her roots. Mom and I had written so many things together over the years. I would write, and she would edit all of my college and graduate school papers. So, it was awesome to be able to do this together. To laugh and cry together as we did it. Holly worked with us to capture and edit all the pictures and then arranged for a company to have the books professionally bound.
We also wrote poems and worked with our Hospice of the Western Reserve music therapist, Brooke Baker, to turn three of them into songs. When I hear them now, they transport me back into those moments and how I felt. When my mom passed away, she asked in her final moments to hear our three songs. I love that they were among the last things Mom heard before she went to heaven.
 
In the final weeks and days of Mom’s life, we often reflected on how special this time of supporting Mom living with ALS was for us. Not only did we get help in her daily care and support in making really hard decisions; we sang, we danced, we painted and we wrote books. We composed songs and worked on puzzles together. We most likely would not have made time to do these things had she not gotten sick. It was a gift, and truly some of our best time together. 

We opened ourselves up to the opportunity, which was absolutely necessary for this to be possible. Hospice of the Western Reserve came into our home and helped transf

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