Written by Heather Johnson, RN
Resource Nurse, Empira
Watching someone you love; someone who holds such a piece of your heart, go through the trials and depths of dementia can often is difficult and sometimes just darn right unfair. Growing up I spent a great deal of my time with my grandparents. Both of whom shared their love with me, my siblings, and my cousins. Our extended family is large, yet somehow my grandparents ensured that we each had individual opportunities to have some special time with them. They took us, two-by-two, on road trips across the United States. My Grandfather was at the wheel of their Lincoln Town Car and my beautiful Grandmother sat as his co-pilot with and her trusty highlighted Rand McNally Road Atlas on her lap. Packed and ready, with one last trip to the bathroom, we set out on trips ear-marked by great stories, laughter, history lessons, singing from a wine-list, and learning how to tip when given great service. All experiences are forever engrained in my memory and in my heart.
My grandparents taught us to have a “Servant’s Heart” and to take an active part in your community. My grandfather served as the mayor of his small hometown of Clarks Grove up until the time of his death. He was on the local volunteer fire department, served on councils in the area, and was also active in the Benevolent Order of the Elks, working his way up to the Minnesota State President.
My grandmother served as a 4-H leader, scout leader, church leader, and a founding force of the Clarks Grove Heritage Society. As she aged, she shifted her talents to knitting and, one of her legacy gifts to her community in Albert Lea was knitting thousands of baby caps for the local hospital which were then presented to each newborn baby. Later, when she made the move north to Maple Plain, MN to an Assisted Living she continued to knit. She knit beautiful pastel baby hats and added what became her signature golden thread halo to the crown. Beautiful. Grandma assigned me a new role and duty and that was to assist her in counting those hats and then deliver them to the Allina Buffalo Hospital where her gifting tradition continued. Grandma had a little notebook that she kept near her knitting chair and basket, and in the notebook we would write the date and number of caps that I was delivering. She would point out specifics with each little hat and asked me to critique her work. Each hat, each stitch, was completed with amazing precision and done with love, and I would praise her for her talent and her contribution. When I would visit her following the deliveries of the hats, I would relay the “thank you” from the hospital staff and she would smile and in her eyes I could see she was pleased.
My grandmother had a form of dementia that affected her speech, ultimately taking her ability to verbally communicate. Her difficulty in talking did not slow down her knitting or detract from the number of babies who felt Grandma’s love. Sometimes we wondered if she could make those hats with her eyes closed! Months and months would go by and we had our same “game plan.” She would knit hats, I would stop by and she would share them with me, we would count them and, of course tally them. I would deliver them and later tell her of how they were received. As time progressed, I noticed a difference in her work. The stitches were not as tight and uniform. The hat sizes were different from one another and her signature halos had become a little crooked. It occurred to me as her disease was progressing, the hats were telling her story. There came a time that the hats were no longer ones that someone else might identify as beautiful, and I didn’t deliver them to the hospital as I had promised my grandmother. I saved them, shared them with my siblings and cousins who had been such a meaningful part of Grandma’s life, and kept a number of those prized hats for myself; tucked carefully away in my cedar chest.
“Maintaining a sense of purpose through meaningful activities has a direct effect on dignity and selfhood for people living with a diagnosis of dementia” (Roach & Drummond, 2014). My grandmother lived the age of 90, outliving my grandfather, the love of her life, for 18 years. For my grandmother, her ability to contribute, to have a purpose and be of value came in the form of knitting those hats. I can’t help thinking about what is my purpose today, and what will my purpose and value bring?
Roach, P., & Drummond, N. (2014). It’s nice to have something to do; early-onset dementia and maintaining purposeful activity. Journal of Psychiatric & Mental Health Nursing. 21 (10). Pp889-895. doi:10.1111/jpm.12154