“I don’t know who you are, but I know that I love you”

Karie Charlton writes about grief, dementia. and love.

Photo by Roman Grachev on Unsplash

My grandmother’s death could more accurately be described as a series of small deaths that mercifully came to an end one night while she slept. Dementia took her away from our family over the course of more than a decade.

The grief started with small things. My grandma didn’t quit smoking; she forgot that she had smoked as her dementia progressed. When she could no longer cook, it was only upsetting because my grandfather was far less skilled — his most infamous meal being a hot dog stew, which spurred us to explore other options for feeding them. Having meal deliveries was the first help they accepted. A little of their independence died that day, but not their steadfast love and loyalty to each other.

As time passed, grandma had good days and bad days. She covered forgetting the names of her nine beloved grandchildren by referring to us as “my darling” which, to her credit, is what she called us even when she did know all our names. I once visited her with my mother at the nursing home, and she greeted us with a happy smile but clearly didn’t know who we were. My mom reminded her, “I’m your daughter, Jan” to which my grandmother replied like a young wife from a long time ago, “I have three daughters and a baby boy.” She was too far away from the woman who had an adult granddaughter to know who I was, but she still told me she loved me. Later, a nurse came to give her some medication and she said to the nurse, “I don’t know who you are, but I know that I love you.” It was sad and sweet. It was the death of the uniqueness of the love between individual family members, but it showed how broad and deep my grandmother’s love was for everyone she met.

Gradually, there was less and less of my grandma’s sweetness and more and more ugly dementia saying things that I’m still trying to forget came out in the sound of my grandmother’s voice. If I ever lose my memory, I hope these awful noises are the first to go. The only way my grandma was recognizable was in the fierce love of her children. When she shouted unsettling things, they would recall happy memories of their “mummy” as if they were carving the details into their bones. Even when dementia took her voice away completely, they communicated love to her and from her. The siblings honored the end-of-life care outlined by their parents. They took turns checking in on their parents and being firm but kind with staff when they saw something amiss. The morning after my grandmother died during the night, all of the siblings were all at the nursing home to be with their father when he woke up.

As a pastor, I tell grieving families that love is eternal. And at funerals, I often recite Romans 8:38-39, “For I am convinced that neither death, nor life, nor angels, nor rulers, nor things present, nor things to come, nor powers, nor height, nor depth, nor anything else in all creation will be able to separate us from the love of God in Christ Jesus our Lord.” I didn’t understand those words fully until my grandma died. For those words to mean anything at a funeral means that they must mean everything while we are living. If we allow embarrassment or inconvenience or sickness or anything in creation to stop us from loving one another here and now, then we will struggle to understand how deep and genuine and eternal the love which we are called to share truly is. It wasn’t my grandma’s death but her life that has taught me how to live as one who loves, who is loved and who will always be beloved.