Our Journey with Dementia

They say you learn something new every day. In her final years with us, my mother taught both my wife Katherine and myself something new every time we visited. The journey of dementia is a difficult one, but I think many of our challenges came from our initial inability to understand the language and dance steps of the disease.

I recall those difficult early days when Mom first moved into her new home in long term care. We were paralyzed with fear and discomfort whenever another resident wandered into her room. These folks were clearly confused and very curious about us. It seemed that everywhere we went, we had an entourage. In those early days we had to learn the art of redirection if we wanted to visit Mom without interruption. In time, we came to take these interruptions in stride and to deal with this cast of characters with humour and compassion. Those experiences proved to be only the beginning of a huge learning curve.

Over the years, as Mom declined and communicated less, there would be other lessons to learn. We wanted her to have the best life she could and we knew that companionship was vital to her wellbeing and enjoyment of life. Communication with her was often wordless. We would hold her hand, comb her hair, or listen to music together. We learned through trial and error what would make her calm and what would make her laugh. With close observation of her face and physical reactions, we worked through those days together.

Along with our visits, Mom had daily visits from Dad. Toward the end of her life we asked for and received help from Hospice Northwest. When mom’s volunteer Elsie was introduced to us, it became very clear that her friendship and time with Mom would become an invaluable part of her care. Elsie played a very supportive role in Mom’s last days and we will be forever grateful to her for that.