4 out of 4 stars
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As populations age, many of us may be confronted with dementia in a loved one. We might even do well to plan ahead for our own care. The Dementia Dance: Maneuvering Through Dementia While Maintaining Your Sanity by Rosemary Barkes is a moving non-fictional account of her mother’s progression from short-term memory loss to the inability to walk or eat solids. Packed with advice, the book is not only a memoir but also a guide.
The first clue came when Rosemary’s father passed away. Rosemary and her siblings were horrified when their mother Lois casually asked, “Who died?” They realized that they had paid insufficient attention to their father’s vaguely voiced concerns. Both parents preferred to disregard grim realities. When Rosemary picked up their medical records, she learned that her mother had been diagnosed with dementia two years previously. Since she also had balance issues, it was unsafe for her to live alone in a house with cellar steps. While reasoning would be lost on her, at that stage, Lois was able to insist that she wanted to stay at home. How could her family convince her to go into an assisted living facility?
One thing I liked about this book is that Rosemary tells it like it is. She is upfront about how they had to deceive her mother into moving. She discusses the costs of the care — it’s not cheap. However, she includes practical advice on how some expenses can be avoided. I was impressed by how level-headed she was as she grappled with the changes. As reflected in the title, she compares caring for a dementia sufferer to a dance with a partner who always leads. She writes: “… the pain and the heartache can be minimized if the caregiver works with dementia instead of against it on a day-to-day, sometimes moment-to-moment basis.”
There is certainly pain in the effects of dementia, which made for alarming reading at times. Equipped with a walker and a call button, with no short-term memory, Lois could not think to use these aids and suffered falls. The story is not depressing, however; happier moments grace its pages. For example, Lois modelled in a style show at the age of 85. On one level, the book is a collection of anecdotes. I appreciated the way Rosemary included details about her mother’s past and her talents and former activities.
Well-written and concise, this is a quick read with short chapters. A slight weakness was that information was sometimes repeated. Not all family members had such a positive, accepting response to Lois' decline. A more detailed discussion of this might have been helpful to some. Also, the dance analogy seemed to be dropped part-way through. The poet in me would have liked to see it developed further.
I’d recommend this book to anyone who is a caregiver for someone with dementia. The insights could be transferable to caregivers for anyone with a mental health or other condition. I loved the emphasis on the importance of being an advocate. As Rosemary puts it: “There is a fine line between being an advocate and being a nuisance, folks. It’s okay to be both.” This inspired me to give of my best in my own advocacy role.
As this is the experience of someone from the USA, some information may not be relevant for other countries and cultures. That said, no doubt there are common patterns in dementia, so the advice on dealing it with it could apply anywhere. If you don’t like to read non-fiction, this is not the book for you.
The book seems professionally edited; I spotted only minimal errors. It flowed well and I found it hard to put down even though I knew the ending – no question of spoilers. There's a small surprise, however, in the touching conclusion Rosemary draws at the very end, rounding things off nicely. As it has major strengths and only minor weaknesses, I rate this book 4 out of 4 stars. The advice on meeting people where they are and on "dancing" with them could apply to life in general.
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The Dementia Dance
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