Dementia memoir pulls the reader in

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Elizabeth Leis Newman
Elizabeth Leis Newman

There's a secret about attending conferences like the recent American Library Association: Occasionally you may be gifted with advance reader copies of publications.

There were a few ARCs in particular that I was excited about snagging, but there are three in particular I wanted to mention because it showed how misconceived notions can betray us. One was by Hollis Seamon about a teenager dying in hospice and called “Somebody Up There Hates You.” One was by an up-and-coming author whose novel touched on all sorts of topics I am interested in, such as relationships and traveling abroad. I was sure I would love that one. The final one was from Central Recovery Press, which handed me a book called “Love in the Land of Dementia: Finding Hope in the Caregiver's Journey.” A journalist named Deborah Shouse wrote it.

Guess which two of the three I finished?

Maybe that comes from spending years in the healthcare industry, but I find myself gravitating toward books that teach me something. There was nothing in the second book that I didn't know, and the characters weren't people I wanted to spend time with.

What's remarkable about “Somebody Up There Hates You,” on the other hand, is how much it nails the hospice experience for someone who is young in a way that never feels cloying. In fact, it's a fairly aggressive book in terms of how it portrays teenagers, violence, sex and love.

I would argue that “Love in the Land of Dementia” is almost a companion piece, even though it is gentler, non-fiction, and geared toward a completely different audience. Shouse writes in a straightforward fashion about her mother's descent into dementia, and the relationship between her parents, not shying away from issues such as what happens when a strange man is in her mother's room or how she becomes more childlike. What's lovely is the testament to strength of her parents' marriage and how she writes in a way that's both accessible and wise. There's a section early on, before her mother enters long-term care, where her father becomes exasperated with how forgetful his wife has become.

“I just want you to concentrate more,” he tells her. Shouse writes “My father is the third-born child of two Russian peasant immigrants. My father also understands adversity and challenge. He will conquer any villain to save the woman he loves.”

Shouse, who is a delight in person, told me the book has been well received by nursing homes, and I believe I know why. She's quick to acknowledge the nurses, the activities director and how the employees work to engage residents. Toward the end, she meets Naomi Feil, who created “Validation Theory,” and joins a Validation Circle.

Ultimately, what both books have in common beyond coming to terms with end-of-life care is that they are a testament to who we love, and why. Somebody Out There Hates You” comes out Sept. 3, and Shouse's book comes out on Nov. 15. Both are worth reading, and those who leave a comment below will be eligible to receive a free copy.


Elizabeth Newman is the senior editor at McKnight's Long-Term Care News. Follow her on Twitter at @TigerELN.

Daily Editors' Notes

McKnight's Daily Editors' Notes features commentary on the latest in long-term care news and issues. Entries are written by Editorial Director John O'Connor, Editor James M. Berklan, Senior Editor Elizabeth Newman and Staff Writer Emily Mongan.

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