A Reading List for Grieving Caregivers

A few books to help you remember that you're not in this alone.

Photo by Aaron Burden on Unsplash

Because I’m a professor of English as well as a writer, it might not surprise you to learn that I read a lot. Or that, in recent years, my reading has included a number of books about dementia, caregiving, and grief. (Don’t worry, I balance things out with a hefty dose of romance novels and the occasional classic.)

What follows is a short list of books I’ve found particularly helpful, organized into two fairly broad categories: books about dementia and books about grief. Some of these books are straightforward non-fiction; others are memoirs, the stories of people dealing with their particular life circumstance. All of these are books I’ve found to be helpful, in one way or another. If you’re a caregiver, I hope you will too.

Dementia and dementia care

Loving Someone Who Has Dementia, Pauline Boss, Ph.D.

This was one of the first books I read after Mike’s diagnosis. It introduced me to terms like ambiguous loss and complex grief—and it was enormously helpful to have names for the things I was feeling. Boss includes chapters on practical topics (like adapting family celebrations) along with chapters like “Seven Guidelines for the Journey.” Her discussion of ambiguity reminded me that I actually prefer unresolved endings in films and fiction because they feel more like real life, which rarely provides us with clear answers. The ambiguity of dementia is just further proof of that.

The 36-Hour Day, Nancy L. Mace, M.A. and Peter V. Rabins, M.D, M.P.H.

This is a reference book, not a sit-down-and-read-it-cover-to-cover book. It’s useful to dementia caregivers who have a specific question about a specific issue commonly faced during dementia care, and it answers questions ranging from What is dementia? to How do I know when it’s time for long-term care? I’ve grabbed this book countless times when I needed quick answers. The section on agitation and anxiety was particularly helpful during a difficult period in Mike’s decline; it helped me figure out what to ask his neurologist at the appointment I scheduled.

In Love, Amy Bloom

I’ve been a fan of Amy Bloom’s writing since I first discovered her short stories in the early 1990’s. This memoir focuses on her husband Brian’s diagnosis with Alzheimer’s disease and his decision to pursue an assisted death through Dignitas, a Swiss organization that allows people with terminal illness to end their own lives with dignity. (Although Medical Aid in Dying is available in some states in the U.S., the laws surrounding MAID mean it’s not available to people with dementia.) Brian’s cognitive challenges leave Bloom doing most of the work involved with fulfilling her husband’s last wish. This is a heartbreaking story about the long process of saying goodbye to a beloved person with dementia and how we find the strength to do that.

The Unexpected Journey, Emma Heming Willis

To say I’m disinterested in celebrity culture is a huge understatement. For that reason, I put off looking at this book even though I knew I might resonate with the author’s experience. Then I participated in a webinar that hosted a conversation about grief and caregiving with Emma Heming Willis, and I found myself surprised by the fact that she seemed just like every other caregiver I’ve met: she didn’t always have clear answers to the questions she was asked. There was a lot of shrugging and head shaking, a lot of It’s hard to say. She seemed a little tired and very sad. This book is primarily designed for people at the beginning of their dementia care journey, but I found it deeply moving nonetheless.

Grief and grieving

The Year of Magical Thinking, Joan Didion

This book deserves a spot on the bookshelf of any person who’s dealing with grief. Didion’s longtime husband, John Gregory Dunne, died very suddenly in 2003; The Year of Magical Thinking details her struggle to come to grips with the sudden upheaval of her life. It’s a meditation on both our psychological understanding of grief and the illogical ways we process human feelings. For instance, Didion details her resistance to giving away her husband’s shoes—unable to shake the belief that he’ll need them again, when he comes home. I can’t say enough good things about this book and what it reveals about the experience of living with grief. (Also recommended: Blue Nights, Didion’s memoir about the death of her daughter in 2005.)

Memorial Days, Geraldine Brooks

Brooks’ memoir focuses on the death of her husband, journalist Tony Horwitz, and the onslaught of red tape and real life that prevented her from properly grieving their long partnership. Three years after his death—after helping her sons work through the loss of their father, sorting out the complicated web of financial details that supported the lives of two freelance writers, and surviving a pandemic that shut down the entire world—Brooks finally retreated to a remote island off the coast of Tasmania “to shut out the world and its demands. To remember my love and to feel the immensity of his loss.” I resonated deeply with so much of this memoir. It’s presented in alternating chapters, half of them devoted to the trauma of Tony’s death and the other half devoted to her time on the island, charting a new course through the rough terrain of grief. Highly, highly recommended.

Widowish, Melissa Gould

You may notice that the title of this memoir is also a tag I use for some posts on The Middler. That’s because, although Gould was much younger than I am when she lost her husband to a long, mysterious illness, her experience of being a young widow resonates with me in many ways. (I’m often the youngest wife in any group of dementia caregivers, for instance—and because Mike is only 61, we had to apply for special authorization to have him admitted to memory care. Facts like these have often left me feeling really isolated on my dementia care journey.) Gould’s memoir has a lot to say about the way we treat people who’ve suffered a great loss, especially when those people don’t fit the mold we have in mind for them.

If you have your own reading recommendations, I hope you’ll share them in the comments. A great book is just one of many ways we can offer each other the support every caregiver needs.