This Is What No One Tells You About Losing A Parent To Alzheimer’s

"On my 43rd birthday, the card and the call never came. I was starting to fade from her mind."
In Spain in 2010, six months after his mother's initial diagnosis.
Photo Courtesy of Wayne Hoffman
In Spain in 2010, six months after his mother's initial diagnosis.

When I turned 43, my mother forgot my birthday for the first time.

The moment I had dreaded for years, ever since she was diagnosed with dementia four years earlier, had somehow caught me by surprise. Her decline had been so gradual ― so imperceptible that even the battery of exams performed by her psychologist barely registered a change year to year ― that I thought I’d be able to hold onto her somehow.

Then, suddenly, I lost her. Or, perhaps more accurately, she lost me.

Normally, a few days before my birthday, she’d send a card ― always something funny, never anything sappy ― that she’d signed from my father and herself. Then, on my actual birthday, she’d call shortly before 6 in the evening and tell me: “Right about now, on this day in 1970, a beautiful boy was born ― just in time for dinner.” I was a very large baby: 10 pounds, 8 ounces, exactly the kind of baby who’d show up just before dinnertime.

On my 43rd birthday, the card and the call never came. The stories about my birth that she repeated every year went untold. I was starting to fade from her mind.

I should have remembered who loses whom when it comes to dementia. As a teenager, I watched my paternal grandmother’s long decline from Alzheimer’s disease. The woman who once made sure to keep orange Tic Tacs ― my favourite ― in her pockets when she came to spend a few days with us began to look at me with confusion and, eventually, complete blankness; there were no more treats bought just for her grandson.

Instead of candy, she started keeping a slip of paper in her pocket to remind her of her grandchildren’s names. It seemed insignificant at the time, but looking back now, I realise what that note indicated: that my grandmother lost all of us years before we lost her.

My mother ― whose broadly diagnosed dementia was now quite clearly Alzheimer’s disease ― was now following a similar path, where people and timelines were starting to blur.

A few months after my 43rd birthday, as we stood in her kitchen, she asked me when I was going to finish high school. I wasn’t sure if she was slipping back in time to the 1980s ― the last time I lived in that house, when I was in high school ― or if she was confusing me with her youngest grandson, who was indeed about to graduate. Perhaps in her mind, I was both me, then, and him, now. Or neither.

The increasingly confusing conversation got cut short a few minutes later when it was time to go see a movie. Before we walked out the front door, she asked, “What are we going to do with the baby?”

“What baby?” I asked.

“Our baby,” she clarified. She had now realised I wasn’t a teenager, but a middle-aged man with a gray beard ― and she now thought I was my father, who is 30 years my senior, and we’d slipped back to the 1970s.

“I’m your baby,” I said.

She narrowed her eyes and looked at me sideways, as if she was trying to figure out if this was some kind of joke ― and if so, what the punchline was.

In the words of the Alzheimer’s Association website: “Alzheimer’s gradually takes away the person you know and love.” That’s true. It took away the woman I used to speak with on my way to work every morning. It took away the person who always supported me emotionally, and was interested in hearing about my life ― my job, my husband, my travels. It took away the person who made me laugh more than anyone else I’ve ever known.

But it took me away from her, too, and I wasn’t prepared for how that would make me feel. When she couldn’t remember what she’d eaten for dinner the previous night, I knew that it didn’t ultimately matter. When she forgot the trip we’d taken together the previous year, it was disappointing, but not devastating. When she forgot where I’d worked for the past 10 years, or lived for the past 20, it was frustrating ― but it didn’t shake me to the core. But eventually, the clock would rewind far enough to remove me from her mind completely.

Her memory didn’t disappear in a consistent and irrevocable reverse-chronological manner. It retreated like waves at low tide. It would recede, and then return, but not quite to the same point it had been before. And again, and again, each time pulling out farther and coming back just a little less.

People and timelines go hand in hand, since each provides context for the other. As my mother’s long-term memory ebbed, receding ever further into the past, she began to forget the people involved in now-forgotten events that had happened in more recent years. She held on to me for years after her diagnosis, but eventually the tide pulled back too far ― before 1970, before I was born. And I vanished.

Finally, she moved into a group home for people with dementia. When I visit now, much of her has already disappeared, but if I look closely, really concentrate on her face, I can still see glimpses of her old self in a gesture, an expression.

On increasingly rare occasions, she mutters a word or two and I recognise her voice. She is fading, ever fainter, but I haven’t completely lost her. But the harder truth is evident in her eyes, when they scan past me without recognition: I’m the one, it turns out, who’s gone.

Read more about how Alzheimer’s affected Wayne’s relationship with his mother in his new true-crime family memoir “The End of Her: Racing Against Alzheimer’s to Solve a Murder,” and follow him on Instagram @waynehoffmanwriter.