This is a personal caregiver story from my own family. In August, I lost my aunt Sue to dementia with Lewy bodies. Lewy body dementias are the second most common form of degenerative dementias, behind only Alzheimer’s. It’s like having Parkinson’s and Alzheimer’s at the same time.

We started losing Sue about seven years ago. Her memory started slipping, and we couldn’t talk with her the same as we used to. She was in her early sixties then, and she was fit and healthy and active, so it was definitely a shock to our family.

My Uncle Dale’s Caregiver Story

My uncle Dale was an amazing caregiver for his wife. Dale and Sue had just retired from working full-time, and they were ready to do more traveling and have more adventures together. Instead, they sold their house in Nebraska and down-sized to a small senior living apartment in Wisconsin, to be closer to their children and grandchildren. Dale cared for Sue in their apartment until 2019, then needed to move her into a memory care facility next door. His caregiver story was just beginning. For the next few years, Dale would walk next door to visit and care for Sue. Most nights, he fed his wife her dinner.

The journey was difficult. My uncle Dale did his best to take care of himself along the way, but there’s not much you can do about the emotional stress and pain. Our family leans on God, and we hold fast to the hope of eternal life. Dale and the rest of our family found solace and comfort as we prayed and trusted God. As with most family caregivers, Dale’s faith and love guided him through this season.

Dale received lots of support from his family, especially from a daughter that lived nearby. Sheryl and I were able to visit Sue twice while she was living in the memory care facility. Last year, I presented a Songs & Smiles singalong show for the residents there. By that time, Sue could no longer get out of bed, so I sang with her alone in her room. I cherish the memory of seeing the light in her eyes as I sang. I will always remember, too, how her face lit up when she heard the sound of her husband’s voice.

We know how valuable it is to maintain connection with a loved one, but it’s also very challenging. Sometimes, words fail. So, we are so glad that Dale was able to connect with Sue by reading Joyful Memories to her. He wrote to tell us, “I have read the magazine to Sue several times. Every time she is awake and attentive.”

My uncle Dale’s caregiver story tells the impact, the toll of caring. He told us reading our magazine was also helpful to him. He enjoys reading, but being under so much stress, he found it difficult to read a book, so the short articles in the magazine were perfect for him.

Complicated Grief

We laid Sue’s body to rest on August 29th. I was honored to serve as a pallbearer. Sue is survived by Dale, two married daughters, and four grandchildren. We continue to pray for peace and comfort.

When you lose someone to Alzheimer’s or Lewy body dementias, you lose parts of them gradually over time. In other words, you grieve during the journey. So, while there were many tears at the memorial service celebrating Sue’s life, we also felt a sense of relief and hope. Loving someone living with dementia involves complicated grief. I wrote about that in an article called Ambiguous Loss and Dementia.

Sue was a very talented musician, and we had a special bond with music. She shared her gift as a music teacher, piano teacher, and cellist with Orchestra Omaha. (Look for a special page about the cello in our upcoming “Musical Instruments Issue” of Joyful Memories magazine.)

Many times, Sue accompanied me on the piano. This picture is of her playing for me in July 2016. Our family was presenting a “Christmas in July” program at the senior living facility where my grandmother (the same grandma who recently turned 100) resides in Illinois. I was singing, and Sue was beautifully playing, “I Want a Hippopotamus for Christmas.” Sue’s disease was progressing already, and I think that was probably the last time she performed in front of a large audience. I think about Sue many times as I’m leading singalong shows, and I love singing the “Hippo” song in my Christmas shows.

Why We Ask for Donations

We ask for donations, because we want to help more and more people. There are so many people like my aunt Sue living with dementia, and so many caregivers like my uncle Dale who need support. Every caregiver story we hear touches our hearts. When you donate to Songs & Smiles, you positively impact lives. You send free books and DVDs to caregivers. You bring joy to families through our singalongs and our dementia-friendly magazine. You keep families connected, helping create moments that will be cherished forever.

If you are caring for a loved one right now, may your journey be blessed with moments of genuine joy and connection. May love guide you and sustain you as you care.