I’m reading an incredible book right now—Inside the Dementia Epidemic: A Daughter’s Memoir by Martha Stennius. I downloaded it to my Kindle, thinking I would only skim it, considering it as a “comparative title” for my own book about dementia, Tangles and Plaques, which I’m currently shopping out to small presses. But then I couldn’t put it down.
Unlike my collection of essays—taken from seven years of blog posts about caregiving for my mother, who has Alzheimer’s—Stennius writes her book looking back, reflecting on (and at times harshly judging herself for) the way she handled each stage of her mother’s descent with dementia. While my posts are immediate and only lightly edited, the chapters in her memoir delve more deeply into the emotional roller-coaster that the mother-daughter relationship can be, with or without the added feature of dementia and caregiving.
Stennius writes scenes of intimacy with candor—like the first time she had to help her mother with her diaper. And she shares her own embarrassment at realizing that she had never brushed her mother’s hair. But it’s the way she weaves the bumpy issues of their relationship before the dementia with their changing roles that was so powerful for me, as a daughter, as a mother, as a reader.
Even if you are caring for a loved one with other health issues, or just beginning to look into the next steps to take with your aging parents, this book will be helpful. I nodded as I read about her struggles with choices of assisted living, memory care units, nursing homes, Medicare, and Medicaid. Here’s what happened when Martha learns that Medicare is stopping payment at the rehab center because her mother has met all her goals:
I’m taken by surprise, as only last week the staff thought Mom would be there a few more weeks. I will have three days to arrange Mom’s transfer back to Greenway. What follows is a logistical debacle—missed doctor’s signatures; delayed approvals from her old assisted living facility for her to move back; crises at my job; and Andrew’s tenth birthday party. If Mom stays at the rehab center past Friday, there will be a high price to pay–$200, funds that Mom will need for her future care. Friday morning I squeeze two hours out of my day to move Mom back to Greenway.
I’ve dealt with similar situations over the years and I’m sure they’re not over, as I’m in the middle of one with Medicaid right now. But I find comfort—if only knowing that others are going through similar struggles—in Stennius’ wonderful memoir. And it’s well written.