Saving Her Almost Killed Me

I knew caregiving would break my heart.

What I didn’t know is that it would empty it first.

Caregiving changes you long before it takes over your schedule.

It rewrites your life without your permission, and by the time you realize it’s happening, the narrative is already different.

People talk about caregiving like it’s just an act of love. They admire the sacrifice, commitment, and the strength it takes.

But they don’t tell you what it will cost.

Whenever someone praised me for rescuing my grandmother from a nursing home, it felt like an outsized reaction. Like I’d gifted her a brand-new Buick LeSabre and let her retire early.

What people don’t talk about are the parts that change you in ways you don’t get to undo.

That’s what this is about.

How it completely takes over your life and not for the better.

You start planning for emergencies that haven’t happened yet. You listen for sounds that signal something is wrong. You don’t notice how much of yourself has shifted until there isn’t much left to shift.

Some people will tell you that caregiving is the same as caring for a baby.

A baby cannot tell you what brand of diapers to buy and threaten to take you out of the will if you don’t.

Seeing my grandmother in a hospital bed in my home was worse than changing her diapers. And the diapers were awful.

But seeing her helpless, wearing one; was much worse.

Dementia erased most of her memories, but what remained was a distorted sketch of the woman I remembered growing up.

The softness was gone.

What surfaced instead were words that were sharp, humiliating, and mean in ways that violated every social rule we rely on to feel safe.

Even at ninety pounds, she had a presence that filled the room. It even unsettled doctors and nurses who had seen everything.

Even when they knew she had dementia, they gave in to requests they shouldn’t have. Some took what she said personally.

One night, she threatened to punch and spit on a nurse.

And then she did.

That night ended with her in mitts so she couldn’t hit anyone. A face mask so she couldn’t spit. It was a calm process, like protocol. But it didn’t feel ordinary.

She didn’t look like someone in an elderly hospital wing anymore. She looked like someone restrained in a psych ward. And even knowing why the restraints were necessary, it didn’t make it easier to see.

Most days, I didn’t know whether to laugh or demand she be discharged early, before it stopped being my choice.

Then, the lessons.

I had to find out the hard way that in younger adults, a yeast infection is like wearing the wrong glasses. You notice right away and swap them out.

In older adults, it’s like someone switched the prescription.

The world suddenly looks and feels wrong, which might seem small to someone who doesn’t wear glasses. Yet it throws everything off and shows up as extreme agitation and frustration.

Worst part is that the person experiencing the symptoms can’t explain to you what exactly is wrong.

This is the part of caregiving people don’t prepare you for.

The part where you watch someone cross a line you can’t cross back with them.

No blogger, therapist, or book could have equipped me for this.

My grandmother had turned into the kind of person she had worked so hard to protect me from my whole life, and now it was my job to protect her — not just from the doctors, but from herself.

Some days I even found myself protecting my own heart.

Her dementia didn’t cause her to totally forget me. It caused her to forget herself, and that was harder to see than anything else.

I was one of the few people she never completely forgot. But every morning she had to be reintroduced to me first, and then she was fine. I still don’t quite understand it, but it was our thing.

Once I said “Grandma, it’s me,” she would say, “Oh please forgive me, Goldie” — her nickname for me. But I cannot even explain how much I dreaded going in that room each morning just to get the intro over.

Every morning, I woke up with death on my mind. Fearing I would walk in and she would be dead. As much as I hated our introduction, it meant she wasn’t dead, and that meant more to me than spending the first minute of seeing her, reminding her of who I was.

Then there were her lucid days. These excited us both. We would reminisce about all the things she did for me and how protective she was of my brother and me.

Like the time she jumped out of a moving car to attack my brother’s ex-wife because she pretended not to see her.

Those conversations gave us both a boost. But then by evening she would say, “I don’t know you. Get the fuck out of my room.”

People often say that you should never fight with someone before they’re about to leave because you never know what might happen.

But when you’re expecting something to happen and that person’s home is a guest room in your house and you’re responsible for keeping them alive, that saying has different meaning.

The conflict now becomes: should I give her that strawberry ice cream before she goes to sleep, to keep her from getting upset with me, even though I know it will spike her blood sugar?

Or do I run the risk of having her die knowing she did so mad at me?

Or are my emotions at a safe enough distance to not give her ice cream and not regret it because I know even if she dies it was still the healthier choice?

What no one tells you about caregiving is that it isn’t just about keeping someone alive.

It’s about living in a constant state of conflict. Hoping they don’t suffer, fearing the day they won’t wake up. Wanting the situation to end, without wanting the person to end with it.

And no one tells you how alone and helpless you will feel holding all of that at the same time.