A Week in Three Parts, Part 1

It's been a week since my mom passed away. I've had a prolonged respite before returning to my daily routine, and during this time, I wrote a three-part reflection on the final week of my mom’s life. 

I experienced the ugly, the bad, and the good simultaneously—but each felt distinct enough to need its own space.

This is the first part, the Ugly. It’s about what her body went through, what I had to watch happen to my mom, and what I wish I’d known a lot sooner.

If you have a loved one with dementia, the end can take longer than you expect. It can look different than you expect. And it can leave you wondering whether you’re doing the right thing, even when there’s nothing more to be done.

And that’s the point of writing this. Because I don’t think we talk about this stage enough. Not honestly. Not openly.

And it's time we do.

I wanted to start here, get all the anguish out of the way, move on to the Bad, and then end with the Good, dwelling on what I will be intentionally carrying with me going forward. 

Part 1: The Ugly

There’s a silence at the end of life you cannot prepare for. 

It's not a silence that fills the room after the last breath. I know what that’s like.

No, this is the kind that settles in slowly, long before that ending moment. It's a silence that happens when the person you love is still physically alive but is dying slowly, bit by bit.

My mother died from complications related to dementia. I'm not sure if that will be the official cause on her death certificate, but it’s the truth. 

Dementia didn’t just take her memory, her ability to communicate well, solve problems, make decisions, and all the other things she lost over the years. 

It took her ability to walk, talk, swallow, and eventually, breathe. 

This isn’t a story about the beauty of a peaceful death.

It’s not meant to be emotionally affecting or poetic. It’s just the raw, honest account of what I witnessed and what I wish someone had told me before it reached this point: dying with dementia can be long, horrific, and hard to understand.

I always imagined the end for my mom would be quiet and still. That she’d refuse food and fluids, fall into a deep sleep, and then just… slip away. But that’s not what happened.

Her body entered a phase called “active dying” early in the week. For some people, that lasts 2-6 hours, sometimes even a full 24 hours. 

For my mom, it lasted nearly three full days. And these three days were after the time when she hadn’t eaten or had any fluids, by her own choice. 

Her organ systems slowly shut down. She stopped producing urine. Yet her breathing was regular and normal, her heartbeat still strong. Her face grimaced. Her hands fidgeted. Her body twitched. She made noises, thankfully not from pain, but from reflexes. I watched her lift her arms toward the ceiling. I watched her gasp for air every few minutes. It looked like a struggle, but it didn't look like suffering. 

Her body just kept going.

Her higher brain was gone; the parts that controlled the kidneys, digestion, active responses, nervous system, and more. But with dementia, the connection between the higher brain and the brainstem—what controls heartrate, breathing, reflexes—eventually breaks down, so the two stop communicating. Without that coordination, her body was running on reflex alone—no awareness, no regulation, just automatic responses trying to keep going. The last signals from her brainstem—flickers from a system that hadn’t fully shut off yet.

Everything I've experienced with death up to this point, it all went out the window. 

It was excruciating to watch. It was hard for me to accept that she wasn’t aware on some level. Hard for me to know when to talk to her: could she still hear me? Reach out to hold her hand; could she still feel a touch?

I didn’t realize the body could just keep going for so long.

I didn’t realize how long the body could hold out without food, water, or output. 

I didn’t realize how long reflexes could last after awareness is gone. 

And I didn’t realize that dementia can cause such a painful, drawn-out ending.

Really, hadn't she already lost enough? Was dementia now going to rob her of a dignified death?

But her heart was strong. Those who love the most usually have this trait.

And her lungs kept trying. Her body just didn’t know how to stop. 

This is something I never thought to ask about: death with dementia. I never thought to question what the final stage would be like.

Needless to say, it isn’t always gentle or quick. It can be a slow unraveling with no clear timeline. No clear end.

And I really wasn't prepared for how uncertain it would all feel.

For almost two years, because I wanted as much help for her as possible, she was under hospice care. In the final week of her life, hospice workers, who had seen many deaths before hers, said her body held on longer than expected, longer than most.

I had support from her hospice team, but I learned more by observing and researching. In fact, there were moments I found myself explaining things—even to the professionals. That’s not a criticism. It’s just the truth of how this happened.

I found myself constantly asking: Is this it? Is it time? There was no clock to measure the signs because none of them were exact.

And through it all, I waited. Sat. Held her hand. Left the room. Came back. Waited again. There were moments when I felt like I was losing my mind from the hours of not knowing. But mostly, I just felt helpless.

I watched her breathing change. I watched it pause. I watched it come back again. I watched her heartbeat stay steady for hours longer than anyone expected. When she took her last breath, her heart rate was at 97 bpm. Her body was warm. Her coloring was normal. 

Watching someone’s body slowly shut down like this is ugly. Not undignified, as I would later come to accept—but deeply, humanly uncomfortable. 

Maybe some parts of it were sacred or peaceful, and in the future, I may be able to recall those moments. But most of it was confusing and quiet and distressing.

This was the hardest part. And no one should have to go through it without at least knowing what it might look like.

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In Part 2, The Bad, I’ll talk about the unkindness I experienced from strangers, the instability of moving between three hotels in less than a week, and the exhaustion of not knowing how to balance my work, grief, and basic needs.

In Part 3, The Good, I’ll write about the moments of immense beauty and peace that still found their way in—through the staff at her memory care community, cardinals, and unexpected numbers of life.