Editor's Note: Michele Tripi is a former Hospice of the Western Reserve home care patient who had ALS. Her daughter, Jackie Pfadt, played an integral role in her care, along with her father, Joe Tripi (pictured above), and other family members and friends.        

Obviously, living with a terminal illness is extremely stressful and heart breaking.  But we as a family went all-in together.  We did so much. Hospice of the Western Reserve 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. 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 [amyotrophic lateral sclerosis] 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 and it truly 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 all of us to 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. It was awesome to be able to do this together. To laugh and cry together as we did it. Hospice of the Western Reserve worked with us to capture and edit all the pictures and then arranged for a company to have the books bound for us. 

We also wrote poems and worked with the music therapist 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 these years of supporting Mom living with ALS were for us.  Not only did we get help from hospice in her daily care and support in making really hard decisions; we sang, danced, painted, wrote books, composed songs and "puzzled" together. We 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 years together.