Rebekah Churchyard, 27, speaks about her relationship with her Grandfather living with dementia, and her passion for new research as a member of the World Young Leaders in Dementia (WYLD).
When you’re fourteen years old, there’s a lot going on. Dealing with fluctuating hormones, emerging personalities and high school doesn’t leave time for much else. I was fourteen in 2003 when my Grandma first told us that my Grandpa was diagnosed with ‘semantic dementia’. She carefully explained that this is a special type of cognitive disorder where he would gradually lose the ability to do things like plan, make decisions and talk.
My Grandpa was a well-known teacher in Fergus, Ontario, Canada. His career path was one of the two stories he would always tell; “Did you know I was a teacher? It’s funny because I never wanted to be a teacher…”, he would say.
To generate extra income for their retirement, my grandparents operated a Christmas Tree Farm. They become well known and loved community figures. Grandpa would spend his days on his tractor in the fields, pruning and baling trees. They had planned to travel in their retirement as a reward for decades of hard work. We knew things would change the day he put water where oil is supposed to go in his chainsaw. It was scary for my Grandma.
My Grandma did a wonderful job accessing support and resources available to her, especially from the Waterloo-Wellington Alzheimer’s Society. My Grandpa did not enjoy attending Day Programs and Grandma hired personal support workers or asked family and friends to come stay with him. He would regularly greet guests and say with a sigh, “You know my brain’s no good anymore”. At first, I responded with a dismissive yet reassuring “I still love you”.
As I continued my studies I learned to respond in a more caring way with, “I’m sorry, that must be so difficult. It’s very nice to see you, I love you”.
Times with Grandpa are some of my favourite memories. We would watch baseball, hockey or play cards. He would hold up his milk mug and ask if I want “some of that”. My Grandpa was never to be found in the kitchen but in the last months I spent with him at home he began offering to microwave me Jamaican patties. I do not usually eat Jamaican patties (neither did he) or drink much milk, but these were some of the most delightful meals I’ve ever had.
I am grateful for my Grandma’s honesty with me. She expressed a new tenderness in her husband that she hadn’t known paired with agonizing grief at the changes in her life partner. I would feel endlessly guilty. Although my Grandma, mother and aunts were his primary caregivers, I think anyone caring for someone living with a neurocognitive disorder feels responsible for their wellbeing.
“Grandpa was more affectionate in his last year than ever before. Other changes were harder to accept, such as increased sensitivity to noise, which would make him cry.”
In 2013, Grandpa moved to long-term care. It was the best care possible, he had a private, spacious room very close to the dining area that also faced the garden and the forest beyond. It didn’t matter what others said; Grandpa hated it there. For the first while he would ask to go home every time we saw him. He would even offer us money. My heart is still heavy remembering how hard it was to say no.
He knew my face, and recognized me as “his” but no longer verbalized how he knew. He continued to greet visitors with “My brain doesn’t work anymore”.
Grandpa was more affectionate in his last year than ever before. Other changes were harder to accept, such as spitting and increased sensitivity to noise which would make him cry. He could no longer listen to Grandma, an accomplished pianist, play the piano. He was often angry and frustrated by his dependence on her. She was the one thing he didn’t ever forget, but he blamed her for much of his lost freedom.
Grandpa had been living with dementia, a terminal diagnosis, for over a decade. Suddenly and unexpectedly, my Grandma died in April 2014. Grandpa, who now spoke very little, began to ask “Where is the girl?” Weeks later, he said seriously to me, “My wife is dead you know,” and I replied, “I know, I’m so sorry”.
My Grandpa stopped asking about going home. He did not want to eat, sing or be around people. He would lie in bed for hours staring at the ceiling. Sometimes we would sit in mutual silence, aware of discomfort as we searched for conversation. I would smile, guilt escaping through my teeth; he would smile back, apologetically, and we would sit. I could have done more, visited more and stayed longer. I did what I could and take comfort in knowing that he would be proud of the accomplishments that kept me away from him.
In August 2014 I was preparing to move to Toronto for graduate studies when my Grandpa died abruptly of natural causes. The difference between my Grandma and Grandpa’s funerals were striking. During his years living with dementia he lost most of his community.
My final memories of my grandfather are the sweetest. He would always walk guests to the door of his locked unit. Grandpa gave the softest goodbye hugs and would say “Goodbye sweetie pie,” I would answer, “Bye bye, have a good day,” and he would reply, “Have a good decade”, and rub his cheek against mine.
My engagement with World Young Leaders in Dementia is to ensure that progressive research includes advancement in current models of care for people living with dementia. Joyful moments of human contact with care partners need to be supported in workplace policies. All people need time to simply be together.
To me, these meaningful interactions are more important than the best medicine.
By Rebekah Churchyard – Research Associate at Ontario Shores Centre for Mental Health Sciences and member of World Young Leaders in Dementia.