Watching Grandma Lose Her Mind
I thought I wasn't afraid of death until I watched my mom guide my grandmother through Alzheimer's. But there's beauty there, too.
Who is my grandmother to me if she doesn’t recognize me as her grandson? Doesn’t remember taking me to watch Utah Jazz basketball games and slipping me popsicles before dinner?
If we are our minds, who are we when our minds are gone but we’re still physically here?
If you live into old age, you have a one-in-three chance of losing your mind.
That’s the rate of Alzheimer’s disease in people aged 85 and up.
I acknowledge that describing the horrors of Alzheimer’s as someone “losing their mind” may be triggering. Traditionally, that phrase — “she completely lost her mind” — has been used to describe people who have gone “crazy.” Had a breakdown, behaved irrationally, etc. It’s become a rote phrase, one we throw out without much consideration for the meaning of the words themselves.
But every day, millions of us see our spouses, parents, and grandparents literally lose their minds. One day, they’re there. The next, so much of what makes them who they are is— where, exactly? The person they were for all those decades can’t be gone. The years they spent raising us, feeding us, teaching us how to be people. The mistakes they made with the best intentions. Those things happened, their impact and effects are still happening in the present continuous tense.
A person isn’t just who they are today, they are who their actions and beliefs across a lifetime have shown them to be.
But then who is this person, the one who looks like my grandmother, the one that has to be coaxed out from under a piano because she thinks the memory care staff are trying to poison her, who’s convinced that Nazis are searching for her and will kill her if they find her? This person who is mean, nasty, and cruel to nurses and volunteers, even her own daughters? Is it fair to call that person Grandma, when I know that my grandma would never act that way?
Who is my grandmother to me if she doesn’t recognize me as her grandson? Doesn’t remember taking me to watch Utah Jazz basketball games and slipping me popsicles before dinner?
If we are our minds, who are we when our minds are gone but we’re still physically here?
I’ve never been someone who carries much existential dread about death, or the temporary nature of our life here on earth. My other grandma, my dad’s mom, passed away recently at nearly 100 years old. I could accept that she was gone, even as the impact of her century of life was still felt in the hundreds of people whose lives she touched.
But in watching my grandmother’s Alzheimer’s progress, and watching her daughter — my mother — deal with the ramifications, I’ve found my fear again.
I was always comfortable with the thought of dying, ending, no longer being here on earth. But I now realize there’s a scenario in which I will be both here and not here, doing and saying things with the physical body and face that the people know as Taylor, but not actually being me. Not really. Can those actions and thoughts be considered part of my life if I’m not aware that I’m doing them, if the physical systems that help determine who I am are broken or shut down?
Where would those actions go in the book of my life? Will they be printed with an asterisk? Will they be listed in the conclusion paragraph, or in the afterword?
These are my fears. They’re real and ugly and messy, and I haven’t figured them out yet. They genuinely frighten me.
But that’s not all that’s come from watching Grandma become someone else.
There’s a generation between my grandmother and me, a person I call Mom.
At the same time I’ve been rediscovering existential fear within myself, I’ve rediscovered true selflessness within my mother.
There have been times in my life when I thought I was behaving selflessly. But the truth is that there was almost always something in it for me — even if it was just the positive feelings that come from someone expressing gratitude, telling you they’re thankful for your actions. Being seen to have done a selfless thing.
My mother (and her sister, my aunt), get none of that. Day in, day out, again and again and again across months and months, they enter that memory care facility knowing they’re going to care for a person who looks like their mother but has almost nothing in common with their mother. They know that at best she’s going to be confused and unhappy, and at worst she’s going to be terrified, paranoid, and actively antagonistic. And through it all they know that no matter what they do — calming her down from all-out panic, clipping her toenails, moving all of her belongings into a room down the hall — she will not only be ungrateful but won’t remember them having done any of it.
That’s true selflessness. And in that selflessness, I’ve found the bridge between my grandma before and my grandma now.
My mother’s love, and the manifestations of that love through her selfless actions, take the shape of something bigger than mind and body. It is the vague, indistinct outline of my grandmother’s soul.
For centuries humankind has searched for some evidence of consciousness, some physical phenomenon that can be measured separate from the electrical signals of the brain and body. Proof that a human being’s identity leaves a measurable impression on the physical world.
Maybe we’ve been looking in the wrong place.
My grandmother is still here, even though her mind isn’t, because her daughter is still here serving her. My mother’s love for her own mother has transcended the gulf between who my grandmother was and who she is now.
Today, my mom serves a woman she doesn’t know, and who doesn’t know her. But that service is done in tribute to a person who is no longer here, a person my mother does know — the woman who raised her, who kept her family together after my teenage mom lost a brother and a father in the span of a couple of years. Who made mistakes despite good intentions. Who had intentions, back when her mind was capable of those intentions.
That woman is still here, because my mom is still serving her.
If I can be blessed enough to witness that kind of love, maybe I can live with the fear.
Have you had experiences with a loved one either experiencing Alzheimer’s/dementia or otherwise watching them lose their identity to some degree? I’d love to hear about your experience in the comments. Thanks for reading!
As someone who's had multiple loved ones in my life affected by Alzheimer's, I've had a lot of these thoughts and fears. This was a good read and I appreciate the post.