Lessons My Mom Taught Me About Alzheimer’s

This September marked the 12th anniversary of my mother’s passing after a long battle with Alzheimer’s. She fought every day and taught us all how to face an illness with a fierce spirit and a kind heart. 

I learned so many things about caring for someone with this insidious illness. There are no links to resources or source material. Because it all lives in my heart. These all come from my personal experience and I hope to help others facing the same journey.

Enter their world

In the early days of the illness, it’s so tempting to correct the person or remind them of the conversations and events they have forgotten.  Frustration builds for you both.  They wish they could remember. No amount of reminding will help. It will only serve to hurt or confuse them. 

It can be hard to have the same conversation over and over. Or to tell them the same thing for what seems like the one-thousandth time. 

Once I gave over to simply spending time in whatever moment my mother was in, we were both more relaxed. I could enjoy each conversation, no matter how many times we had it.  There were days she was fully present with me. And others where she seemed to be in her own world. I found if I listened to what she was saying or watched what was occupying her, I could find a small thread of connection.

One time she seemed upset and kept repeating “I don’t know why they don’t listen.” I replied “I know, it’s so annoying that they don’t.” She looked into my eyes for the first time in that visit and laughed. “I guess they never will.” she said.  And the moment of frustration passed.  To this day, I hope she wasn’t talking about my sister and me!

We had some of our most touching and, sometimes, funny moments during those days.

Routines and Familiar Places Matter

New places can be confusing or stressful for the best of us. That’s even more true for someone with Alzheimer’s. There is comfort and predictability in a routine. 

I found visiting her in the mid-morning was our best time and that coming right after lunch was a recipe for a bad visit. She loved to walk, even after she was living in a memory unit, and could only walk around the floor in a seemingly endless circle. So mid-morning walks around the floors was what we did.

Before she moved to the memory unit, in cold weather, we would go to the mall for a place to walk. One time, I parked in a different part of the lot, near a different entrance.  Mom got very agitated. She didn’t want to get out of the car. It took me a few minutes to realize what seemed to be a small difference to me, was a big difference to her. It was unfamiliar. Needless to say, we drove the car to our regular entrance and the rest of the trip was fine.

Let them help, even if they can’t do it well

Having some amount of independence and agency is important to all of us. If someone wants to help unload the dishwasher, who cares if the plates end up in the wrong place? If they want to go with you to run errands, it’s okay if it takes more time.

For my mother, it was folding laundry. I often brought her to my house for dinner. Having her in the kitchen made me nervous. Yet, she wanted to help. With two small children, there was always laundry to fold. She was happy to sit in the kitchen folding away while I cooked and the kids played. It didn’t matter that I often had to refold everything.  Or that when there wasn’t laundry, I grabbed clean towels and tossed them into a laundry basket.

You can find various ways for the person to participate and give them some dignity. 

The most important lesson: They will come back to you

Watching Alzheimer’s rob us of my mother was terribly painful. She aged quickly. At some point, she stopped smiling and laughing. I loved her laugh. She slipped away from us long before she died.

Then something magical happened in the months and years after she passed, I could no longer easily remember what she was like in those last two years. They have been replaced by earlier memories.

The memories of her reading to my children. Or of her at the beach with us. Or at the center of any extended family gathering laughing and listening to everyone. Or of her sitting at our table grading her student’s work during the years she taught high school math.  All those are stronger than anything in those final years. Those are the core memories of who she was and the gift her life was to so many people.

Now I can hear her laugh. Now I can see her youthful and vibrant. Now I can feel the warmth of her hand in mine. 

If someone you love is living with Alzheimer’s or another memory-related dementia.  I see you and I promise, they will return to you.