About 5 years ago I started noticing changes in my mother. She was suddenly scared of things she had never feared before, like going inside a mall to buy a flashlight by herself. She needed additional context that she had never needed, like not remembering who “John” was unless I said “John, your long-time dermatologist.” That was the beginning, and with time it inevitably gets worse as it is with neurodegeneration.

It was hard because it’s infuriating to have somebody ask questions and become unable to do things they used to do. If you don’t suspect that they have some kind of health issue, it’s often very tempting to think they are just not paying attention or don’t care enough.

If they already do have a diagnosis then it’s still tiring, and you need a lot of patience to not take it personally, and that’s hard if you are already stressed by something else.

Over time I realized a few things that made caring for my mom easier.

Connect instead of correct

Your loved one often is stressed themselves. At some level they know they are forgetting things. They ask the same thing over again not because they want to, but because their mind is not allowing them to remember. And often stress makes it worse — I know it does with my mom. If she feels stressed, her memory gets substantially worse.

So try to see that: she feels uncertain, that’s why she asks. Comfort her. Ask her what worries her. Hug her. Give her words of affirmation. Repeat the answer to the same question, again and again. Try to always connect. You can gently challenge your loved one, but generally correcting won’t go anywhere and will just stress you both.

Accept and Improvise

At some point your loved one might start saying things that you know are not true, or forget things that are true. For example, my mom sometimes speaks about attending an event in the past that I know she didn’t attend. I used to correct her. Now instead I ask her about what she liked most in that event, and make light of the mistake.

Know that her brain is changing and along with that, her mind and her memory. Memories are plastic and are never actually objectively stored — which is why everybody has a different version of the same event even without neurodegeneration.

Simplify and optimize for independence

As the ability for complexity fades, I have adjusted my mom’s environment physically and digitally. The idea is that she has as little decision overwhelm as possible and can live independently as long as possible.

Digital simplicity
I switched her from a Windows computer to a Chromebook with a touchscreen — simple, fast, and easy. I decluttered her phone and left the most important things on the homescreen: Spotify, WhatsApp, and speed dials for the people she calls most. I changed her smart TV to a Roku because the remote is much simpler and has buttons for YouTube and Netflix, the two apps she uses.

Physical simplicity
My mom’s taste in clothing has simplified over the years. She loves her white and striped shirts and white or black pants. So those now occupy the most accessible part of her closet, and everything coordinates with everything else. The bathroom used to have many things — now it has just the essentials: conditioner, shampoo, toothbrush and toothpaste, lotions. Periodically I declutter it so she doesn’t have to do a lot of work.

Make this fun — it’s the time you still share

A friend whose mom is also ill once said to me: “Maybe that’s why I did all this spiritual practice — to be able to breathe and process when my mom suddenly insults me.” This stayed with me.

When I decided to take care more of my mom, all the inner work I’d done came in handy. I can’t say I’m never angry or sad — I am. But I do try to see the bigger picture and have fun with my mom, make jokes, do something we both like.

My grandma had neurodegeneration too. My cousin showed me a trick: she would play a song she knew my grandma liked and ask her to dance. My grandma would enjoy it and say “that’s a song from when I was young.” They would sit down together after dancing. A few minutes later, my cousin could do this again — and even if it was the same song ten times in a row, they could still share a beautiful moment.

Caregiving is exhausting, but it can still contain beautiful moments — sometimes even the same one, again and again.