"I love you too, Billy": Books about Dementia and Family
My Mom is 90 and living with dementia. This isn't a unique or even unusual story. It breaks my heart to see her decline. But I've come up with some coping mechanisms that helped me through this. I batch cook for my mom, I sing with her, I tell terrible jokes and we look at family photos.
My first language is Macedonian and, a few years ago as it became clear Mom was losing her memory, I started to get her to teach me folk songs in Macedonian from her youth. I sing the five or six songs she taught me, and she often joins in so we can sing together. We're at the point where she can remember a song if I start to sing, but if I asked her to choose a song she wouldn't be able to.
I also have about a dozen jokes (some mildly risque), many puns or word plays in Macedonian and funny stories that she laughs at. One good thing about a person living with dementia is that my humor, which is corny and repetitive, always seems new and fresh. Don't make me tell you about the three kinds of farts, and the accompanying sounds. But, if you're interested in fart books for kids you might enjoy my blog There are Three Kinds of Farts: Funny Flatulence Books for Kids.
A few years back my sister gathered boxes of photos and sorted them thematically, or by year or family. Mom enjoys looking through these. We also have some larger family photos and when Mom forgets she's a Mom we'll use these as cues to prompt her or remind her. I also show her pictures on my phone and she likes that a lot. This is a favorite one and, for some reason although it's a more recent memory, she really remembers our dog Rufus, she even kind of knows he died last year during the first wave of the pandemic.
There's a lot of repetition with Mom, which I find comforting, but I know some folks get a bit impatient. I try not to argue with Mom about wrong facts, using phrases like "could be!" Sometimes she cries. I let her cry a bit, hold her hand, and then tell her a dirty joke that gets her laughing.
If your loved one has dementia you'll have your own unique story and experience with that. But some experiences are common among many folks, or can give us some insight into our own experience, and maybe help us come to terms with our own situation.
So, I wanted to share some memoirs of folks living with Alzheimer's or another form of dementia. For this list, I'll use the word dementia to refer to either.
"Elizabeth Hay, one of Canada's most beloved novelists has written a poignant, complex, and hugely resonant memoir about the shift she experienced between being her parents' daughter to their guardian and caregiver. As the daughter takes charge, and the writer takes notes, her mother and father are like two legendary icebergs floating south. They melt into the ocean of partial, painful, inconsistent, and funny stories that a family makes over time. Hay's eloquent memoir distills these stories into basic truths about parents and children and their efforts of understanding."
"Based on her hugely popular Facebook posts and Instagram photos, Feeding My Mother is a frank, funny, inspirational and piercingly honest account of the transformation in Jann Arden's life that has turned her into the primary "parent" to her mom, who is in the grip of Alzheimer's. Jann Arden moved in to a house just across the way from her parents in rural Alberta to be close to them but also so they could be her refuge from the demands of the music business and a performing career. Funny how time works. Since her dad died in 2015, Jann cooks for her mom five or six times a week. Her mom finds comfort in her daughter's kitchen, not just in the delicious food but also just sitting with her as she cooks. And Jann finds some peace in caring for her mom, even as her mom slowly becomes a stranger." You might also enjoy Jann Arden's newest book If I Knew Then: Finding Wisdom in Failure and Power in Aging.
I don't have a large repertoire of cooking. Mostly it's dishes my Mom taught me how to make, like stuffed peppers or lentil stew. Every time my mom eats one of my stuffed peppers she says some variation of, "You cook?" or "I haven't had stuffed peppers in two years (or since 1974)!"
I make these in batches of eight (or more). Then I take several up to Mom, one for now and others in the freezer.
"One journalist's surprisingly hopeful in-the-trenches look at Alzheimer's, the disease that claimed her mother's life. Like many loved ones of Alzheimer's sufferers, Lauren Kessler was devastated by the disease that seemed to turn her mother into another person before claiming her life altogether. To deal with the pain of her loss, and to better understand the confounding aspects of living with this disease, Kessler enlisted as a caregiver at a facility she calls Maplewood. Life inside the facility is exhausting and humbling, a microenvironment built upon the intense relationships between two groups of marginalized people: the victims of Alzheimer's and the underpaid, overworked employees who care for them. But what surprises Kessler more than the disability and backbreaking work is the grace, humor, and unexpected humanity that are alive and well at Maplewood."
"Just past seventy, Alex Witchel's smart, adoring, ultracapable mother began to exhibit undeniable signs of dementia. Her smart, adoring, ultracapable daughter reacted as she'd been raised: If something was broken, they would fix it. But as medical reality undid that hope, and her mother continued the torturous process of disappearing in plain sight, Witchel retreated to the kitchen, trying to reclaim her mother at the stove by cooking the comforting foods of her childhood: "Is there any contract tighter than a family recipe?" Reproducing the perfect meat loaf was no panacea, but it helped Witchel come to terms with her predicament, the growing phenomenon of "ambiguous loss "-- loss of a beloved one who lives on."
"For as long as Elizabeth can remember, she has watched her father trail after her mother, kissing her multiple times a day and holding her hand. She watched her mother smooth the lines in her father's face and pay attention to his every move, even when she was desperate for some time to herself. When her parents began to age, Elizabeth and her siblings are placed in the difficult position of taking over more and more supportive roles and tasks. They fix their parents' home, negotiate finances, eventually weather the back and forth of will they or won't they move into a nursing facility; finally they do. Berg gracefully takes readers through navigating the emotional and physical challenger of guiding parents through the final stages of life."
"Once a sharp, strong-willed and independent woman, Roher's grandmother's life took an unexpected turn when an accident left her with a brain injury, leading to early onset dementia. An unlikely protagonist, grandma was an elderly woman trapped by her deteriorating mind, aging body and the walls around her. This story illuminates the often overlooked narrative of a senior, her complicated history and inner life. Loveable and tragic, she is determined to get back to a familiar place, to be home again."
"In her first memoir, Roz Chast brings her signature wit to the topic of aging parents. Spanning the last several years of their lives and told through a mixture of cartoons, family photos, documents, and a narrative as rife with laughs as it is with tears, Chast's memoir is both comfort and comic relief for anyone experiencing the life-altering loss of elderly parents. When it came to her elderly mother and father, Roz held to the practices of denial, avoidance, and distraction."
"A stirring memoir of a daughter caring for a mother with dementia that is sure to become a touchstone for many others. The Long Hello explores the emotional rewards and challenges that Cathie Borrie experienced in caring for her mother, who was living with Alzheimer's disease, for seven years. Between the two, a wondrously poetic dialogue develops, which Ms. Borrie further illuminates with childhood memories of her family, and her struggle to maintain a life outside her caregiving responsibilities."
"Wendy Mitchell had a busy job with the British National Health Service, raised her two daughters alone, and spent her weekends running and climbing mountains. Then, slowly, a mist settled deep inside the mind she once knew so well, blurring the world around her. She didn't know it then, but dementia was starting to take hold. In 2014, at age fifty-eight, she was diagnosed with young-onset Alzheimer's. In this groundbreaking book, Mitchell shares the heartrending story of her cognitive decline and how she has fought to stave it off. What lay ahead of her after the diagnosis was scary and unknowable, but Mitchell was determined and resourceful, and she vowed to outwit the disease for as long as she could."
If you have a parent with dementia, you may need to explain it to your young children. Here are a few recommended books that tackle this topic.
"Perry's mother and father are busy people ... they're impatient, they're tired, they get cross easily. And they think that only children, like Perry, should be kept busy. On Saturday mornings Perry and her father visit her gran, Honora Lee, at the Santa Lucia rest home, but Gran never remembers them. 'Who is that man?' Honora Lee asks when Perry's father leaves the room. After movement class is abruptly cancelled, Perry is allowed to go to Santa Lucia on Thursday afternoons. She discovers her Gran has an unconventional interest in the alphabet, so Perry decides to make an alphabet book with the help of Honora and the others. Soon everyone is interested in Perry's book project. The ACB With Honora Lee unfolds with characteristic warmth, quirky, surprising humor and a rich cast of 'residents'. The story is a meditation on kindness and patience and acceptance; that of the very young and the very old"
"A young girl and her Nana hold a special bond that blooms in the surroundings of Nana's magical garden. Then one day, the girl finds many weeds in the garden. She soon discovers that her beloved Nana has Alzheimer's Disease; an illness that affects an adult brain with tangles that get in the way of thoughts, kind of like how weeds get in the way of flowers. As time passes, the weeds grow thicker and her Nana declines, but the girl accepts the difficult changes with love, and learns to take-over as the magical garden's caregiver."
"Elise wonders why her grandmother's words keep escaping her - do they fly off to play tricks on her? Elise's grandmother used to know many marvelous words, but now she seems to be losing them all the time. Can Elise help her by catching them, like butterflies in a net? This award-winning picture book offers a gentle exploration of the effects of Alzheimer's on the relationships in a family, and the special bond it creates between a grandmother and her granddaughter. By the end, Elise comes to believe that her grandmother has used up all her words and has passed them on to her, as a gift."
"This simple book written in prose helps children understand Alzheimer disease. A little girl is troubled by her beloved grandmother not remembering her name. The book explains that Alzheimer is not contagious it affects the brain and changes the way things will be done."
See also "What's Happening to Grandpa?" by Maria Shriver.
"Although Alzheimer's disease makes it difficult for Callie's grandfather to remember things, his family keeps him occupied, and Callie's special task is to help him enjoy playing the piano and singing favorite songs."
See also Singing with Momma Lou by Linda Jacbos Altman.
Practical How-To Books
If you are caring for a loved one with dementia, these books offer help and support.
"Finding the connection with a loved one afflicted with dementia is a challenge millions of people face: One in ten Americans has a family member with Alzheimer's, and one in three knows someone with the disease. This book offers care partners practical, hands-on ideas for meaningful, creative activities they can do with their patients, family members, or friends who have dementia. It also includes creative tips for busy care partners, offering quick and easy forms of renewal and respite. Too often, people living with dementia are entertained instead of engaged. Research shows that artistic and imaginative activities reduce the need for psychotropic medications. Doing activities together also increases social interactions, builds positive energy, and adds a sense of discovery to the day."
"Dementia is a little understood and currently incurable illness, but much can be done to maximise the quality of life for people with the condition. Contented Dementia - by clinical psychologist and bestselling author Oliver James - outlines a groundbreaking and practical method for managing dementia that will allow both sufferer and carer to maintain the highest possible quality of life, throughout every stage of the illness. A person with dementia will experience random and increasingly frequent memory blanks relating to recent events. Feelings, however, remain intact, as do memories of past events and both can be used in a special way to substitute for more recent information that has been lost."
"The cultural and medical history of dementia and Alzheimer's disease by a leading psychiatrist and bioethicist who urges us to turn our focus from cure to care"
If you want to know more about my Mom please, check out my blog Always Wear Clean Underwear, Love Mom: Vintage Mother's Day Photographs.
I leave you with the photo I took of my Mom and me just a couple of weeks ago. It makes me kind of cry every time I look at it, but then I think about the three kinds of farts joke and I start to smile.
If you have a story about caring, living with or loving someone with dementia, you are welcome to share it in the comments below.