Should I tell Mom she has Alzheimer’s?

Dear Grassflower: My question is simple…perhaps too simple, because I have been struggling with every possible angle of it. Should I tell my mom she has Alzheimer’s?

She was just diagnosed and is in the early stages. I’m not sure if she’ll understand, or how or if she’ll accept it. It’s not going to make things better, and it’s just one more thing to worry about that she can’t control. But I feel like I should tell her something. Please help.

– Tim S., Minnesota

Mostly, no, but it depends.

It’s POSSIBLE that Mom’s still lucid enough to understand and prepare for what’s coming.

If Mom’s in the early stages and has historically been pretty good at rolling with the punches, then there’s an argument that Mom’s still capable of understanding what’s happening.

My husband’s father NEW well before he passed away that he had untreatable pulmonary fibrosis, and from the moment his doc took him off all his meds, he began strategizing what to do with his remaining days. He sent emails to family and friends telling them what was on his mind, and I’m sure they were as heartbreaking to write as they were to read. But it was a way of getting closure while he still had time.

For most people with Alzheimer’s, by the time they’re diagnosed, they’re past the point of processing their impending mortality in any rational way, and all they can do is worry. You should also ask yourself what good will come from telling Mom she’s trapped in a nightmare you can’t wake up from.

If you must tell Mom, keep it simple. Tell her that yes, she has memory problems, but for now, we’re going to use Post-It notes and an appointment reminder app on her cellphone. Or tell her that since she gets lost driving, you’re going to take her shopping and to her doctor’s appointments. Deal with what’s in front of you, one day at a time, and let the days go by.

That’s probably all she can handle anyway.

Think seriously about not telling her anything. The point will come, sooner than you think, when Mom’s waning ability to understand what’s happening will be replaced by a ravening anxiety that she can’t seem to shake. She may fidget, wander, or talk about “going home” or “back to work.” This is the boat slipping away from the shore and her drifting farther into the darkness.

At that point, there’s no sense in telling her because she won’t understand.

Still feel you should tell Mom? Ask yourself this question.

Do you HAVE to tell her she has dementia, or do you just feel you must? If the answer to THAT question is “yes”, ask yourself why. If it’s a load you want to get off your chest, remember the words of the old song, “The Weight”:

“Take a load off […] and you put the load right on me.“

Making yourself feel less burdened is just going to put a burden on Mom she can’t take.

The truth: it’s not what you say, but what you do.

Deciding what to tell Mom about her condition is a very personal thing, and since it basically involves opening up about the long, slow death of her mind, you have some time to think about what you’re going to say and how you’re going to say it when you can’t get the thought of her predicament out of your mind. You also have time to separate Mom’s emotional needs from your own.

So here’s a “pro” tip: do or say whatever allows Mom to live out the rest of her life as meaningfully as possible and in peace. Anything else may feel like relief, but it is not kindness. Unfortunately, that is the portion of the load you must learn how to carry.

The Tibetan Book of Living and Dying contains several passages that “spoke” to me as I was considering my own Mom’s mental decline from vascular dementia. First among those was the quote “Do not be afraid of dying. Be afraid of the unlived life.”

After my mom, a former university professor, became mentally incapable of anything but unintelligible scribbling in paperbacks she could no longer read, we pivoted to the things that still gave her joy: tater tots, ice cream, and sunny afternoons. And that is what I remember about Mama: sunny afternoons looking at the clouds, talking to the birds, and watching little bugs crawling around in the garden of her dementia home.

One day while we were out on a walk, she looked down at a rock that had gotten misplaced from the flowerbed and announced, “Good luck, kid.” This was my mom at her best during her dementia: whimsical, childlike, and still capable of experiencing joy in the simple things.

Not long after that day, I got a call from Maria, my mom’s primary caregiver, informing me that after a recent fall, Mama was now lying in her bed, unmoving, still breathing, but her pupils were unresponsive. I knew the end was near, and I got there as soon as I could. Within hours, I got a second call that Mama had passed.

Then came the dreaded moment: walking into Mama’s room to say goodbye.

But all I could bring myself to say was “Good luck, kid.”

Somehow, even in the final days of her decline, Mama had taught me one last lesson: to live whatever days you have left as if they were your last, not in sadness but with whimsical wonder that you got to live them at all.

I never regretted not telling her just how far into the dark forest she had wandered. By then, there was little room in my heart for anything but love and appreciation for the little moments together we had been able to scavenge before she was gone.

It didn’t really matter how lost she was, or whether I told her so.

Because I was there.

Holding her hand.

Until she had to let go.