Reading my mom’s teenage diary while she lives in a dementia fantasyland

Reading my mom’s teenage diary while she lives in a dementia fantasyland
She tells us she once jumped out of a plane wearing a parachute, she learned to dance flamenco in Seville and she rode motorcycles around Florence with my sister’s little son and daughter balancing on the backseat. Except that my mother has done none of these things

Everyone in my family knew that my mother kept a diary while growing up during the Second World War, but no one had ever seen it. While she kept it private, she often told my sister, brother and me extraordinary stories about her teenage days in German-occupied Florence. Mom’s stories glossed over the horrors she and her family endured. Instead, she romanticized the war, focusing on the hardships they proudly overcame. It was delightful to listen to them.

One day, many years later, Mom did something that took us all by complete surprise: she handed us photocopies of her diary. It was not clear what triggered her gesture. By then in her eighties, she was still the same bright, educated and energetic woman who had nurtured our intellectual curiosity and taught us to love music, literature and the arts while we were growing up. Her mind had not started failing her. Why did she suddenly feel her words were no longer adequate and she needed to share the pages she had written?

Whatever her intention was, I missed it. Preoccupied with my work and my own young family, I dutifully thanked her and put her booklet of memories on top of a stack of papers on my nightstand.

Now at the age of 95, Mom’s imagination has taken her storytelling up a few notches, making it even more vivid. She tells us she once jumped out of a plane wearing a parachute, she learned to dance flamenco in Seville and she rode motorcycles around Florence with my sister’s little son and daughter balancing on the backseat. Except that my mother has done none of these things: she led a very conventional life in Dad’s shadow, a self-assured lawyer and the patriarch of the family. While she had her own career as a schoolteacher, she retired before turning 50 to care for her three young children.

Over the past couple of years, Mom has often lived in her own imaginary world. It’s a world where there is no room for resentment or regrets about missed opportunities. It’s a world where she led the life of her dreams.

Recently, Mom told us that her wartime diary had been published. She gushed about the book’s commercial success and the book-signing. Like all her other fantastic stories, this one was detailed and sounded legitimate. She was so proud of this major literary accomplishment that it would have been impossibly cruel to correct her. After an afternoon nap, in a rare moment of lucidity, Mom turned to me. “Did this really happen or did I make it all up?” She was about to break into tears.

This episode reminded me the hard way of the existence of the diary. I decided it was finally time to look at it. As it turned out, her diary spans the last few months of the war in Italy. Mom started it on the day of a major Allied bombing of Florence — March 11, 1944 — when she was nearly 17 years old. I scanned the pages, skimming over her comments on the weather, food prices, and her father’s commute to work. Then, I noticed her writing become more confident as she unleashed a masterful chronicle of life under German occupation.

As I read, I learn that the family is on the move, in a desperate search for a safe home. Mom describes the food lines, the multitudes fleeing the countryside to seek shelter in Florence, the innocent blood spilled at the hands of the German occupiers. Her reports are restrained and almost dispassionate. But I suppose once you have witnessed the horrors of war, they stay with you forever. These days, when she watches on TV the images of death and despair from the war in Ukraine, she turns to me and she asks me: “Why another war?” There is a deep sadness in her voice. I know where her sadness comes from.

Mom’s diary reaches a climax with the German army’s retreat from Florence in August 1944. She spares no details of the Germans’ ignominious demolition of all the bridges along the River Arno to delay the troops of the British 8th Army. Ponte Vecchio was the only bridge left standing. In the last few pages, she describes the family’s struggle to return to normality after the Germans’ retreat, with practically no access to water and electricity. In November 1944, Mom closes her diary on a happy note. A dear friend is leaving Florence to move to the British countryside to marry an army officer she met while working as a wartime interpreter.

As I read Mom’s wartime diary, it occurred to me that while I see her regressing in so many ways, I also now see Mom in her heyday. But I find no comfort in this. Her mental decline is faster than her physical decline; it is irreversible and heartbreaking. When I visit her in Florence, where she still lives at home with my dad and their caregivers, she increasingly asks me who I am. I look familiar, she says, but am I her brother, her grandson or her son? There is a look of anguish on her face. Not recognizing her children is very hard to endure.

I try to look on the bright side. Mom is a lucky person. Her cognitive impairment has liberated her, making her even more creative than in her younger days. Often, she is the image of happiness. Once she identifies me and knows that I am her son who lives away from Florence on a different continent, we communicate more intimately, as we did when I was young and living at home. I take out my iPhone, pick a cheerful song among her favorites, and we sing together as the lyrics scroll down the screen. I know that nothing, other than eating a slice of panettone, fills her with more joy than singing.

Mom’s confusion and her exuberance are consistent with her medical condition. She is affected by frontotemporal dementia (FTD), which causes the breakdown of nerve cells in the frontal and temporal lobes of the brain, generally associated with behavior and personality. FTD is far less common than Alzheimer’s; it accounts for about 10 to 20 percent of all cases of dementia in the US, and tends to start at a younger age than other types of dementia. Caring for elderly parents with any cognitive impairment, even at an initial stage like Mom’s, pose an extraordinary challenge. Coping with the transformation in our relationship is especially grueling.

As my mom’s fantasies started, my impulse was to deny her alternate universe and keep her anchored in reality. It felt like the honest thing to do, but quickly proved ineffective and frustrating. I have learned, though, that when caring for people with dementia, their feelings always come first. As I struggled for new ways to communicate with Mom, understanding her disorder and how it affects her was critical. Now I keep reminding myself that Mom’s bubbly moods are due to her medical condition. I try to appreciate how wonderful it is to observe Mom as she starts telling her stories: She straightens her back, her voice regains energy, and her eyes sparkle. I won’t deny her the joy. I want to go along with her fantasies.

With that in mind, I suggest to Mom that she write a novel. Her wartime diary is there to prove her talent. Her stories would fill up the pages beautifully. I tell her that I want to sit back and read them all. My timing is bad. For a moment, she is back from her imaginary world. She glances at me skeptically. She knows it won’t happen. She knows that she is running out of time.