A big thank you to Evelyn Gillespie from Laughing Oyster Bookshop for generously giving me a copy of the book, “Tangles: A Story about Alzheimer’s, my Mother and Me” by Sarah Leavitt.
The unconventional comic format of the book, I think, is its greatest asset. It takes a very difficult topic to digest and breaks it down into bite-size pieces. The story is based on the author’s mother’s life with early onset Alzheimer’s disease.
What makes the book unique is the combination of drawings and written word. Reading through the book, I easily identified with the emotions on the characters’ faces and equally recognized the description of the progression of Alzheimer’s disease. The book has three parts; each one representing the illness at different stages. It tackles many different topics from family conflict, long-distance caregiving, grieving, loss, denial, etc. This book would be an excellent resource for young adults to read when struggling with a parent with early onset Alzheimer’s disease or dementia.
Reading through the book reminded me of my Grade 7 and 8 home economics teacher, Mrs. Richards. Despite my on-going battles with the sewing machine, she continued to encourage me with such positive statements as “your effort is super duper Wendy.” When I accidentally perforated my finger nail with the sewing machine needle, she didn’t dissuade me in the least. She simply bandaged me up and said, “Let’s move on to a different project now.”
Over the years, Mom would speak about her colleague and friend with a great deal of concern. Eventually there was a diagnosis of Alzheimer’s disease. Mrs. Richards was in her late fifties.
Early-onset dementia is used for people who develop dementia under the age of 65 and it affects one in every 1,000 people under the age of 65 years. The most common form of early onset dementia is Alzheimer’s disease followed by frontotemporal dementia.
In the case of Mrs. Richards, getting a diagnosis was difficult. There was a great deal of denial on the family’s part and for them, the initial diagnosis was depression.
Early onset Alzheimer’s affects the entire family. In Mrs. Richards’ case, her adult children were raising young children at the time and working full time, limiting their ability to help with the day-to-day care. It also affected her husband’s ability to work. Mrs. Richards’ behaviour markedly changed. My Mom noticed it most when they went out for their weekly movie night. Mrs. Richards had difficulty ordering food and sitting through a movie, and was at times very angry when someone corrected her behaviour.
There are some great resources online for family caregivers and individuals affected by early onset dementia:
Alzheimer’s Society of Canada: http://www.alzheimer.ca/en/About-dementia/Dementias/early-onset-dementia
National Care of the Elderly Initiative has a very good resource for early onset dementia: http://www.nicenet.ca/files/EOD_Tool_Caregivers.pdf
Canadian Dementia Resource Knowledge Broker has a powerful video showing four individuals living with early onset dementia: http://dementiaknowledgebroker.ca/events/healthy-living-health-promotion/early-onset-dementia-4-different-journey%E2%80%99s-early-onset
When Dementia is in the House is directed at teens living with a parent with early onset: http://lifeandminds.ca/whendementiaisinthehouse/
Wendy Johnstone is a gerontologist and is the founder of Keystone Eldercare Solutions. Her column runs in the Comox Valley Record every second Thursday.