The Part of My Brain Alzheimer's Took

Before my mom was diagnosed with Alzheimer's disease, my mind belonged entirely to me.

I didn't realize that one day a portion of it would belong to this disease, too.

Often, no one talks about what this disease takes from the people who love someone living with it.

But everybody talks about what Alzheimer's has taken from my mom.

Much fewer people talk about what it takes from:

Daughters and sons.

Spouses and Ex-spouses.

Siblings.

Grandchildren.

Friends.

Nobody warned me that part of my mental bandwidth would become permanently occupied.

My mom would have been an incredible grandmother.

Alzheimer's took that from her, too.

I wasn't prepared to watch my sister become a mother without her mom here, too.

And I wasn't prepared for how profoundly sad I feel that my nieces won't know the version of my mom that I knew.

They won't know what they're missing.

But I will.

I love my mom.

She does not deserve this.

She deserves to know her grandchildren in the way she would have loved to.

Another thing no one really talks about a lot is the Anger.

There are days I am angry she needs so much from me.

And a lot of days, if I'm honest, I feel angry at how much this disease asks of me.

Because it relentlessly demands a lot.

Anger can be hard to accept because it sounds awful to say you feel anger toward the person living with a terrible illness like this.

But sometimes you do.

Sometimes I feel anger at my mom.

Anger at the responsibility.

Anger at the vigilance.

Anger that her memory care facility dropped the ball again.

Anger at how much space this disease occupies in my life.

Anger that life was already hard before Alzheimer's arrived.

Alzheimer's didn't just change my relationship with my mom.

It changed the way I move through the world.

The Ticker

And then there's the Ticker.

The endless, unrelenting, unapologetic, cannot-be-silenced-or-numbed-for-anything Ticker.

The obnoxious, constant stream of:

Did she sleep all night or get up and wander?

Was she dressed appropriately for the weather today?

Did she eat enough? For every meal?

Is she wearing her glasses or did she lose them again?

Is she having a good day or is she worried about where all of us went again?

Does she need more toiletries yet?

Did the facility follow through? Why not?

Did someone call me back? Why do I need to follow up every. single. time.

Is she scared?

Why hasn't the staff responded? Why do I always have to ask again?

Remember to file her taxes.

Pay her memory care fees.

Manage her medications.

Schedule the doctor appointments.

Manage her finances.

Buy her new shoes.

And don't get me started on people assuming that once someone moves into memory care, the burden gets easier.

The burden didn't get easier.

The burden just changed.

The Facility Ticker

Did her laundry make it back to her room? Why not?

Did her staff remember to reorder her medication?

Is she wearing someone else's sweater again?

Why am I finding something important out days later?

Why do I have to ask three times?

Who took her glasses? Where are hers?

Why is she holding loose pills?

Wait, WHY IS SHE HOLDING LOOSE PILLS TWICE IN TWO DAYS?!

The Existential Ticker

The most fun one of them all. This is the sleep-stealer.

Did she know who I am today?

Is she suffering?

What would she want if she could tell me?

Am I doing enough?

Am I visiting enough?

Am I making the right decisions?

Will I know when it's time for hospice?

Will I regret this later?

Am I doing enough?

These are the tabs that never close.

As a clinician, I spend a lot of time helping people make sense of difficult experiences.

As a daughter, I'm not sure I have one.

I'm still learning how to hold love, grief, anger, responsibility, and guilt in the same hand.

Alzheimer's has taken a lot from my mom.

Nobody has to tell me that part.

What nobody warned me about was how much it would take from the rest of us, too.

It isn't always storming.

But it's always in the forecast now.

— Katie Berry, LCPC
Owner of True Colors Counseling, Inc & True Colors Healing Collective

This article reflects my experience as the daughter of a mother living with Alzheimer's disease. While every family's experience is different, many adult children, spouses and partners, family caregivers, siblings, and friends find themselves navigating grief, anticipatory grief, memory care, caregiving responsibilities, and the emotional impact of loving someone living with Alzheimer's disease or another dementia-related illness.

If this article resonated with you, I invite you to learn more about Permission Granted: To Show Your True Colors, a restorative daylong immersive created for women who love someone living with Alzheimer’s disease or another dementia-related illness. Registration has not opened yet, but you can join the priority list through the Sunbeam Hollow Sanctuary page to receive details first by clicking the above button.

For connection sooner, Permission Granted: To Come As You Are begins September 9, 2026. This small virtual gathering series brings the same six women together for six live, 90-minute conversations held every other week. You can speak honestly, listen quietly, or pass when you need to, without explaining the complicated parts of loving someone through dementia. While I am a licensed therapist, this is not group therapy. It is a thoughtfully facilitated space for connection, reflection, and feeling less alone.
Click the above button to book a conversation with me if you have interest in joining us.