January 20, 2014

Book Review: Inside the Dementia Epidemic

One of the things I love about social media is connecting with others. Especially when it leads to the opportunity to review a book. And this was one I needed to read:

Martha's Stettinius' memoir of her experience with her mother's dementia came into my life at just the right time. Not only could I relate to it, given my family's ongoing journey with the disease, but it was filled with practical and prescriptive information for those caring for a loved one with dementia.

I appreciated the frankness and intimacy of Martha's storytelling. I know all too well the frustration and exhaustion she details so expertly. The struggle of being pulled in so many directions as a child and parent in a crisis situation. The unexpected and ridiculous obstacles one is forced to overcome in order to ensure the best care for your loved one.

I have experienced and felt all those things.

What was not present was the sense of loss and pain my family has experienced since my dad was diagnosed with dementia. Martha offers a different point of view. Dementia brought her closer to her mother. After a painful, tumultuous history with her mom, she felt through the disease she was "reunited in what the Japanese call 'amae" (pronouced 'a-mah-yee'), the protective, dependent cocoon of mother and child."

Martha's mother became a gentler, more receptive person when she had dementia, and in many ways their relationship improved. They had an opportunity to connect in ways they hadn't before. Martha explains early in the book how she dislikes the view of dementia as "a tragic wasting away and a long, painful goodbye - indeed, as the complete erasure of the person who once was."

That is exactly how I view dementia.

Because that has been my experience. After a lifetime of enjoying an extremely close bond with my father, I have been filled with a profound sense of loss. I write about those feelings here in this space often. Dementia has taken the father I have known and loved away from me.

So I was unable to completely relate to or understand Martha's view of dementia in that respect. But many of her experiences were familiar, and I found her book to be incredibly helpful.

The first thing I did was share a copy with my mom. As the primary caregiver for my dad, I felt it was so important she have her hands on all the resources Martha details in her book. I wish we had read it sooner. We could have possibly avoided a few missteps along our own journey. The book will definitely be invaluable as we move forward.

It would be an essential read for any family dealing with dementia. Martha shares her extensive research and lays out so much important information in one place. Dementia IS an epidemic. Countless families will be impacted by this disease. I was in no way prepared, and that hurt us all. Knowledge is power, and this book gives you the tools you need to face the journey.

Thank you, Martha, both for writing and for sharing it with me!

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