After 12 years of being a caregiver to her now late husband John, who was living with dementia, and drawing from journals she kept over the years documenting the painful journey, author Rosella Leslie began to write Losing Us: A Dementia Caregiver’s Journey.
Now living in Halfmoon Bay on the southern Sunshine Coast, Leslie will be giving a talk and reading at Powell River Public Library on Saturday, May 20.
“During those 12 years, I learned a lot about caring for someone with dementia,” said Leslie. “I want to pass on the knowledge I gained to others going through this process.”
Dementia is a general term for a group of terminal, progressive neurological diseases with no known cure.
According to the Alzheimer Society of BC, close to one-million people in the province will be living with dementia by 2030.
That is a grim statistic for people living with the disease and their caregivers.
Another statistic from the society is that 87 per cent of caregivers wish more people understood the realities of caring for someone with dementia. That’s where Leslie’s book comes in.
“My book can help family and friends know how to help the caregiver,” said Leslie. “Most people want to help but don’t know how.”
Both a story about [Rosella and John’s] life together, and a resource, Leslie’s book provides caregivers with information about support groups they can join and learn from, as well as the author’s personal experience going through continual grief, confusion, frustration and anger.
“[The caregiver] is constantly grieving and I think a recognition of this is helpful,” said Leslie. “Tiredness, depression and reacting to stress are all normal feelings to have as someone caring for someone with dementia.”
Leslie went on to say that unlike other terminal illnesses, there is no parting date and the caregiver (usually the spouse or partner) is losing a piece of the person they love a little bit at a time.
“I kept a journal, and that was a way I processed many of my feelings,” said Leslie. “I looked back at these journals to write our story, and I also include information that helped me be a better caregiver and get through this painful time, and be more resilient.”
Leslie has taken her book and talk to all libraries along the southern Sunshine Coast, Vancouver, Merritt and later Vancouver Island. She said the reaction has been very positive and that her book has hopefully helped others.
“One of the best things I found is to join support groups,” said Leslie. “They allow you to talk with others who know what you are going through, and you start not to feel so alone or unusual.”
Leslie also emphasized that caregivers need to recognize the guilt they are feeling for times when they lose their temper or say things out of frustration.
“They need to know they are not bad people and that they are in a difficult position doing the best they can.”
She and her husband were married for 37 years. The author started to write the book when John went into care during COVID-19.
Later on, Leslie and a person she knew dealing with his wife’s similar illness started a group called Memory Cafe, where those living with dementia and their caregivers could come together to exercise and socialize once a week.
“We established the cafe, and set up an advocacy resource network,” said Leslie. “Eventually we fell in love and got married this past July.”
Leslie will present Losing Us: A Dementia Caregiver’s Journey, along with physical and online resources, at the library on May 20, starting at 2:30 pm.
