I wished I’d known a decade ago that Alzheimer’s disease was about to steal my relationship with my mom.
Back on Mother’s Day 2010, I was seated across from my mom at one of the fanciest seafood brunch locations in Chicago. At the time I was a single mother living and working in Chicago’s Loop area with my two-year-old daughter. Every Friday, my mom took the train from Indiana to spend the day with her granddaughter and ease the cost of daycare.
This particular Mother’s Day weekend I had asked my mom to stay through Sunday. The idea of having her all to myself on Mother’s Day weekend was too fantastic to pass up.
I had budgeted enough for a babysitter and to take my mom to one of our favorite Chicago spots: Shaw’s Crab House. I’d been wanting to try Shaw’s famous Sunday morning brunch for months. This seemed like the right time, and with the perfect person. A few times I looked across the table at my mom, delighted to be drinking coffee with her daughter at such a fancy place, and it felt really satisfying.
I insisted on paying that brunch bill, against my mom’s objections, and I felt a permanent shift happen in our relationship. We were finally peers.
It felt especially fulfilling, because we had never been close when I grew up. She was a nurturing mother, to be sure, but we lacked the mother-daughter spark that seemed to draw so many of my friends and their mothers closer together.
I didn’t talk to her about boys. I didn’t talk to her about sex. I didn’t tell her when I had a falling out with friends. My prom dress was an after-school purchase I’d made on a whim with my own money from a part-time job. Upon seeing it, my mom exclaimed “I wanted to help you pick that out!” I remember feeling surprised.
Fast forward to 2010: Perhaps as my friends and their own mothers were growing apart, my mother and I were finally getting our chance at that connection. The timing was finally right.
Until it wasn’t.
In March of 2019, my mom was officially diagnosed with moderate Alzheimer’s disease, after many years of decline. The window of time that I thought was going to be decades-long on that Mother’s Day morning in 2010 was actually just a few short years.
The Downturn of the Mind
I first noticed that my mom was acting strangely when she came to visit after the birth of my youngest daughter in 2014. By then I was living in Florida — married, with five children under my roof through a combined marriage. My mom wasn’t her usual bubbly self and seemed short and agitated with my children. She got lost on a walk with my youngest one day and seemed to not even understand how it happened.
Subsequent visits showed the same bizarre behavior, with increased intensity. I knew something was wrong, but could not get very far trying to talk to my dad about it.
A public relations project took me to San Francisco in 2016. My mom flew in to hang out with the kids and help my husband while I was gone. By the first day of my trip, my husband texted me to say that my mom was having a hard time. She seemed confused and kept asking when she was going home. She sat with her suitcase in the living room, asking when my dad was going to “pick her up.” She seemed happiest doing dishes but just kept doing them, over and over, apologizing to my husband that she was “probably doing them wrong.”
When I got home to “save the day,” she wasn’t much better for me. I spent most of the remaining days trying to get her to engage with my kids, who she wanted nothing to do with. This was tough for my kids, who often looked forward to these visits from their silly Grandma Sally. We told them that grandma just needed some space, and to respect that.
It would be another three years before her Alzheimer’s diagnosis was official, with emotions at all-time highs between me, my brothers, my dad, and my mom herself.
Though it stung, having a name for what we were experiencing as a family and a treatment path was a relief. The tense question of “what should we do about all of this?” had been answered. It was now time to educate ourselves.
I Didn’t Know That Alzheimer’s Kills
As I started to research more about dementia, and Alzheimer’s disease specifically, I realized very quickly that what I thought I knew about these problems was very limited. The first surprise was that Alzheimer’s is one form of dementia — the most common — but not all dementia patients suffer from Alzheimer’s.
The second shocking revelation was that Alzheimer’s kills. I had always thought it was just a memory-stealer, a cruel quirk of aging, but not an actual cause of death. I was wrong.
Alzheimer’s is the sixth leading cause of death in the United States, according to the Centers for Disease Control and Prevention. More Americans die directly from Alzheimer’s than breast and prostate cancers combined, according to the Alzheimer’s Association.
A study from Rush University Medical Center predicts that by 2050, more than 13 million Americans will be living with Alzheimer’s or another form of dementia.
The life expectancy for a person with Alzheimer’s varies greatly. Patients who are physically healthy when Alzheimer’s is diagnosed can live for up to 15 or even 20 years.
The way that Alzheimer’s kills is by gradually shutting down parts of the brain during the degeneration process. Eventually the disease shuts down something important enough to bodily function to kill the person.
My mom was only 65 at the time of her diagnosis, but we believe she was at least five years into the disease. Her body is healthy, with normal degeneration for her age. The rapid acceleration of her disease means that we are facing the potential reality of this disease being the thing that takes her life.
I didn’t know Alzheimer’s can kill — and does.
What I’m Doing Now
For me, the knowledge that my mother has dementia, just like her own mother had, is frightening on a personal level.
How much time do I have until this comes knocking on my door?
There is no clear-cut answer for preventing Alzheimer’s, and no cure.
I often wonder if I’ll know my own grandchildren. If I’ll have the time — the cognitive time — to be with them.
I wonder about the accomplishments of my own life. Do I have time to finish all of the thoughts I have scribbled in notepads or half-written in Google Docs? Will I leave the legacy of words that makes me proud? Am I spending the moments in my life wisely?
I eat less grains and more healthy fats. I exercise every day. I say “no” to work that doesn’t ignite my spirit. I value quiet, non-productive time with my family. I try new things, even if they scare me. I say “I love you” and “I’m sorry” more often. I let go of annoyances quickly. I journal about gratitude.
I want to know my grandchildren. I’m fighting for that now.
As for my mom, the medication seems to be helping her symptoms and most days, she’s very happy. Our family is adjusting to the new normal, grieving in our own ways.
Mine is a grief for things that never quite happened — for all the Mother’s Day brunches of the future.
But in that grief is self-realization. I don’t have the time that I think I do. Now is the time to say the things, to write the words, to hug the people and embrace health.
Time isn’t a renewable resource — and this moment is the one that matters.