I haven’t seen her in ages…

“Liz?” asks my mom over the phone to my aunt, her older brother’s wife. “I haven’t seen her in ages.”

It’s hard hearing my mom doesn’t remember our recent visit together, one of the best we’d had in ages. I know her short term memory isn’t great and I know that comes with the territory with early onset dementia. All this ‘knowing’ does little to heal the sadness welling in my heart upon hearing about her memory problems.

Soon after hearing my mom didn’t recall our last visit, I found myself sitting at the reference desk where a patron who sees me regularly gave me one look and asked “Honey, are you all right?”. I wanted to cry right then and there and say “No! I’m not. I’m pissed my mom has dementia. I wish she could be here celebrating the holidays with me. I just want to curl up under the blankets, drink crazy amounts of hot cocoa and cry into my journal. But I have work to do,” so instead I softly say, “Oh, sorry, I’m just tired” and fake a smile.

It’s so incredibly hard for caregivers and adult children of those with dementia to balance everyday life with the aching heart. Luckily, I work in an awesome public library and have access to loads of books and memoirs on the topic. After the patron walked away, I researched our latest releases about daughters whose mothers (especially young mothers) have dementia and started pulling a list. I have three titles to take home tonight. Hopefully I will find some release and relief from reading these memoirs. Summaries courtesy of Goodreads.com

On my Bookshelf:

  • Don’t Leave Yet: How My Mother’s Alzheimer’s Opened My Heart by Constance Hanstedt. Summary: As a young girl in the Midwest, Constance Hanstedt was consumed by fear—of her parents, especially her disapproving mother, Virginia; of social situations; and of people in general. Unable to connect with those around her, she embraced perfectionism as a substitute for love. Raising her own family eased some of Hanstedt’s self-doubt. But even as an adult she remained guarded around her mother, avoiding conflict at all costs. Still, when Virginia developed Alzheimer’s, Hanstedt did what the perfect daughter she’d always struggled to be would do: she returned to the Midwestern town where she was raised to help care for a mother who could no longer care for herself. In Don’t Leave Yet, Hanstedt recounts her journey toward facing her fears and rising above the past; her mother’s unrelenting bitterness regarding life, even as she loses memories of it; and her unexpected discovery of an emotion that reaches beyond familial duty: compassion.
  • The Emotional Journey of the Alzheimer’s Family by Robert B. Santulli Summary: An empathic and clear-eyed discussion of the emotional journey of family and friends who care for people with progressive forms of dementia
  • Remembering the Music, Forgetting the Words: Travels with Mom in the Land of Dementia by Kate Whouley . Summary: From the author of the much-loved memoir Cottage for Sale, Must Be Moved comes an engaging and inspiring account of a daughter who must face her mother’s premature decline.  In Remembering the Music, Forgetting the Words, Kate Whouley strips away the romantic veneer of mother-daughter love to bare the toothed and tough reality of caring for a parent who is slowly losing her mind. Yet, this is not a dark or dour look at the demon of Alzheimer’s. Whouley shares the trying, the tender, and the sometimes hilarious moments in meeting the challenge also known as Mom.  As her mother, Anne, falls into forgetting, Kate remembers for her. In Anne we meet a strong-minded, accidental feminist with a weakness for unreliable men. The first woman to apply for—and win—a department-head position in her school system, Anne was an innovative educator who poured her passion into her work. House-proud too, she made certain her Hummel figurines were dusted and arranged just so. But as her memory falters, so does her housekeeping. Surrounded by stacks of dirty dishes, piles of laundry, and months of unopened mail, Anne needs Kate’s help—but she doesn’t want to relinquish her hard-won independence any more than she wants to give up smoking.  Time and time again, Kate must balance Anne’s often nonsensical demands with what she believes are the best decisions for her mother’s comfort and safety. This is familiar territory for anyone who has had to help a loved one in decline, but Kate finds new and different ways to approach her mother and her forgetting. Shuddering under the weight of accumulating bills and her mother’s frustrating, circular arguments, Kate realizes she must push past difficult family history to find compassion, empathy, and good humor.  When the memories, the names, and then the words begin to fade, it is the music that matters most to Kate’s mother. Holding hands after a concert, a flute case slung over Kate’s shoulder, and a shared joke between them, their relationship is healed—even in the face of a dreaded and deadly diagnosis. “Memory,” Kate Whouley writes, “is overrated.”

Have other titles? Feel free to share below.

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