Caregiving and Identity Loss: When You Disappear

Nobody warned me that caregiving wouldn’t just change my life, but that I'd totally disappear inside it.

And the worst part is, I didn’t even know it was happening.

I thought I was tired.

I thought I was stressed.

I thought I was overwhelmed.

I thought I was doing what needed to be done because Mom needed me.

What I didn’t realize was that every time Mom needed more from me, it cost me another part of myself.

At first, the pieces were small enough to justify.

A workout.

A phone call.

Coffee with a friend.

A lunch I could cancel.

A movie I didn’t watch.

A book I stopped reading.

A date with my boyfriend.

A little extra time wandering around the grocery store because it was the only quiet place I had.

None of those things felt like I was losing myself.

They felt like being flexible.

They felt like being a good daughter.

They felt like doing what had to be done in the moment.

Mom needed me, so I adjusted.

Then she needed more, so I adjusted again.

Then more.

Then again.

And because Alzheimer’s doesn’t politely pause and say, “Hey, just so you know, this is going to slowly eat both of your lives,” I kept handing pieces over.

Her world got smaller.

So mine got smaller too.

Her confusion grew.

So my freedom shrank.

Her dependence increased.

So my independence disappeared.

Every new need she had required something from me.

Time.

Energy.

Sleep.

Peace.

Privacy.

Plans.

Dreams.

My own future.

My own body.

My own mind.

My own identity.

And I gave it.

Not because I’m some saint. Please.

I wasn’t floating around the house in soft lighting with a gentle smile thinking, “What a beautiful privilege this is.”

I was exhausted.

I was resentful.

I was anxious for the first time in my life.

I was seriously depressed.

I was trying to work full time from home, raise my son, take care of my mom, keep the house from falling apart, handle the appointments, manage the meds, fight the insurance battles, answer the same questions over and over, and somehow still be a person.

Except eventually, I wasn’t a person.

I was a function.

I was the one who handled everything.

The emergency contact.

The scheduler.

The advocate.

The taxi driver.

The pill sorter.

The short-order cook.

The insurance fighter.

The washer of clothes.

The cleaner of spills.

The person who remembered everything because someone had to.

The person everyone needed something from.

But Sharon?

The actual Sharon?

She was gone.

And the most disturbing part is that no one noticed.

Or maybe they couldn’t notice because I was still moving.

Still working.

Still answering texts.

Still making appointments.

Still parenting.

Still caregiving.

Still saying, “We’re hanging in there,” which is apparently caregiver code for, “I’m one more unexpected disaster away from stroking out in the backyard.”

I kept functioning.

And functioning is very deceptive.

People see you functioning and assume you’re fine.

They see you getting things done and assume you’re handling it.

They see you standing upright and assume you’re not drowning.

But that’s not how drowning always looks.

Actual drowning isn’t usually like the movies.

It’s not always wild splashing and screaming and waving your arms so everyone on shore knows you’re in trouble.

Sometimes drowning is quiet.

Sometimes a person is right there in front of you, silently fighting to keep their head above water, and nobody realizes what’s happening until they slip below the surface.

That’s exactly what caregiving felt like.

I was drowning quietly.

Right in front of everyone.

And because I was still getting things done, everyone on the shore thought I was swimming.

I wasn’t.

I was bobbing above the water just long enough to gasp for air before going under again.

And everyone else was standing on the shore, going about their lives, not realizing I was ceasing to exist before their eyes.

Not physically.

But the version of me that made me me.

The woman who had dreams.

The woman who laughed easily.

The woman who had things she wanted.

The woman who had plans.

The woman who could think about her own future without immediately having to run it through someone else’s needs first.

She was slipping under.

And I was the only one who eventually noticed.

I didn’t notice at first.

That’s what still messes with me.

I didn’t see myself disappearing while it was happening.

I just thought, “Okay, Mom needs this from me.”

So I gave it.

Then gave more.

Then gave more.

Then one day I looked in the mirror and didn’t recognize the woman looking back at me.

Not in a dramatic way.

Not in a cute before-and-after transformation way.

I mean I looked at myself and thought, “Who is that?”

I looked tired.

Haggard.

Worn out.

My eyes had lost their shine.

Everything about me looked like I’d been surviving for so long that survival had become my entire personality.

I looked like a shell.

Like a dead woman walking around doing laundry.

And I know how that sounds.

If you say that to someone who hasn’t lived it, they look at you like you’ve lost your mind.

They want to say, “No, you still exist. Look, you still have your son. You still have your job. You still have friends. You still have a life.”

And technically, sure.

On paper.

But inside?

Inside my heart, my soul, my brain, my body, my mind, I didn’t feel like I existed anymore.

Not as Sharon.

Not as a woman with a life.

Not as someone with wants and dreams and a future.

I existed as the person who took care of everyone else.

That was it.

And there was no one taking care of me.

That’s a very specific kind of lonely.

Because I wasn’t alone in the house.

I was almost never alone. That was part of the problem.

Someone always needed something.

My mom needed me.

My son needed me.

Work needed me.

The house needed me.

The bills needed me.

Doctors needed me.

Insurance companies needed me.

The dog needed me.

My relationship needed whatever scraps of me were left over by the end of the day.

Everyone needed me.

And somehow, in the middle of being constantly needed, I’d never felt more invisible in my life.

I put on the mask because I had to.

I pretended.

I faked it.

I made jokes.

I acted like I was okay because that’s what people needed from me.

They needed me to be okay enough to keep going.

So I was.

Or at least I looked like I was.

But inside, I felt like I’d disappeared so completely that I didn’t know if I could ever come back.

And when I was in the middle of it, the only exits I could see were the ones I was ashamed to even think about.

Either Mom died.

Or I moved her into memory care.

That was it.

That felt like the only way my life could ever belong to me again.

And the guilt that came with that was brutal.

Because what kind of daughter thinks that?

What kind of daughter looks at her mother, who has Alzheimer’s, who didn’t ask for any of this, who is also losing herself, and thinks, “I need this to end so I can breathe”?

A drowning one.

That’s who.

A daughter who loves her mom.

A daughter who doesn’t want her mom to suffer.

A daughter who also doesn’t want to disappear completely.

A daughter who has handed over every part of herself until there’s nothing left that feels like hers.

People who haven’t lived it hear that wrong.

They hear, “I wanted my mom gone.”

That’s not what I’m saying.

I wanted the drowning to stop.

I wanted the constant need to stop.

I wanted my life to have one corner that belonged to me.

I wanted to wake up and have a thought that wasn’t immediately interrupted by medication, appointments, safety, food, laundry, bills, work, guilt, or fear.

I wanted to exist again.

That’s not the same as wanting someone you love to disappear.

It’s wanting to stop disappearing yourself.

And I think a lot of caregivers are silently living inside that exact contradiction.

They love the person they’re caring for.

They would fight for them.

They would protect them.

They would do almost anything for them.

And they’re also angry.

Sad.

Resentful.

Anxious.

Depressed.

Lonely.

Terrified that the person they used to be is gone forever.

Nobody tells you that caregiving can make you grieve yourself.

You expect to grieve them.

Especially with Alzheimer’s.

You expect to grieve the conversations you can’t have anymore.

The memories they lose.

The little pieces of them that fade away.

What you don’t expect is to look in the mirror and realize the disease has been taking from both of you.

It took from her directly.

It took from me through what she needed.

Every part of her disease asked for another part of me.

And I kept giving.

Until I didn’t recognize myself anymore.

If you’re in that place right now, if you’re still underwater, still pretending, still telling people you’re fine because explaining the truth feels impossible, I need you to hear me:

Please don’t give up.

And yes, I know how annoying that sounds when you’re in the middle of it.

Like, wow, revolutionary. Put that on a candle and sell it at Target.

But I mean it.

Don’t give up on the possibility that you’re still in there.

You may not feel like you are.

You may look in the mirror and see someone you don’t know.

You may feel like every part of you has been swallowed by someone else’s needs.

You may think the version of you that had dreams and energy and a personality and a future is gone forever.

I thought that too.

I really did.

I thought caregiving had permanently turned me into someone I didn’t recognize.

And honestly, it did change me.

I’m not the same person I was before.

I don’t think anyone goes through something like that and comes out untouched.

But altered doesn’t mean erased.

Buried doesn’t mean gone.

You can come back to yourself.

Not overnight.

Not magically.

Not in some cute little “I took a pottery class and found myself” kind of way.

More like one tiny piece at a time.

You laugh and recognize the sound.

You care about something again.

You want something and don’t immediately feel guilty for wanting it.

You make one plan that isn’t built around someone else’s needs.

You remember a thing you used to love and think, “Maybe I could try that again.”

You catch yourself in the mirror one day and, for one second, you see a flicker.

Not the old you exactly.

Not the same you.

But you.

Still there.

Still worth finding.

It’s hard.

It’s slow.

Some days you’ll feel like you’re clawing your way back with a plastic spoon.

Very glamorous. Very empowering. Someone alert the inspirational quote people.

But it’s worth it.

Because you’re not just the caregiver.

You’re not just the emergency contact.

You’re not just the responsible one.

You’re not just the person who handles everything.

You’re still a person inside all of this.

And if nobody has noticed that lately, I want to say it here:

I see you.

I see the part of you that’s still underwater.

I see the part of you that misses yourself.

I see the part of you that’s scared there’s nothing left to find.

There is.

Please don’t stop looking for yourself. 

You're still in there and you'll find your way back. 

One piece at a time.