There's something I don't think enough carers talk about.

The moments we're not proud of.

When someone you love is living with Lewy Body Dementia, life slowly becomes a series of repeated conversations, difficult decisions and constant worry.

Most days, you cope.

Some days, you don't.

I wish someone had told me that both were normal.

I Lost My Patience... And I Thought That Made Me a Bad Carer

I wasn't patient all the time

I wish I could tell you I never became frustrated.

That I always answered calmly.

That I never sighed.

That I never needed five minutes to myself.

But that wouldn't be true.

There were days when I was exhausted.

Days when I answered too quickly.

Days when I felt overwhelmed.

Not because I loved Grandma any less.

Because I was human.

There's two days I still think about. 

The first day I still think about is: Grandma was in hospital after breaking her hip.

Like so many families caring for someone with Lewy Body Dementia, life had become a constant juggling act. I was travelling backwards and forwards to the hospital every day.

Trying to keep working.

Trying to keep everyone updated.

Trying to make sure Grandma wasn't alone.

Somewhere along the way, I'd stopped looking after myself. I was exhausted. I'd barely eaten. I was running on adrenaline more than anything else.

When I arrived that day, Grandma kept telling me there were people outside in the corridor selling things.

I looked.

There wasn't anyone there.

She kept insisting.

I kept telling her there wasn't.

Eventually, I interrupted her.

I just wanted the conversation to stop.

Then she looked straight at me.

The expression on her face changed completely. Darkened almost.

She said: "If you don't shut up, I'll tell everyone you put me here."

She meant the hospital bed.

For a split second, I didn't know what to say. The truth is I don't think i actually did say anything. Not another word I just remained silent and let her continue chattering away. 

Looking back now, I understand that Lewy Body Dementia changes how people see the world.

At the time... I was just mentally and physically exhausted.

I finished my visit.

I held it together long enough to leave the ward.

I held it together long enough to walk through the hospital.

I even held it together while I paid for my parking.

It wasn't until I closed the car door that I finally let myself fall apart.

I completely broke down.

I cried harder than I had in a long time.

Not because I was angry with Grandma.

Not because of what she'd said.

Because she hadn't really upset me. It wasn't Grandma talking - it was the dementia.

I cried because I was exhausted.

Because I was frightened.

Because I felt like I was slowly losing someone I loved, while desperately trying to hold everything else together.

Because I felt like I was failing someone I loved, even though I was trying with everything I had.

That moment has stayed with me and I think it will for many years to come. 

Looking back now, I don't judge the granddaughter who sat crying in that car park anymore. I see someone who desperately needed someone to ask, "And how are you coping?" because the truth is in that moment I was not. 

 

The second say I still think about is: after Grandma had returned to the care home after breaking her hip, I asked her about the rape allegation she'd made. She spoke about it so matter-of-factly that, for a moment, it almost felt like an ordinary conversation. She told me it had been "a big fella on a pink motorbike."

Without thinking, my sarcastic side came out.

Straight faced I said,

"You mean Ken?"... as in Barbie's Ken.

She looked at me completely seriously and replied,

"Yes. You know exactly who I mean."

At the time, I turned my head and rolled my eyes.

Looking back, I realise she wasn't joking.

She was trying to make sense of a reality that felt completely real to her.

That's one of the cruellest parts of Lewy Body Dementia.

The hallucinations and delusions aren't pretend.

To the person experiencing them, they're real.

The moments that stay with you

The strange thing about grief is that it has a habit of collecting the moments you wish had gone differently.

After Grandma died, I didn't replay every laugh.

I didn't immediately remember the birthdays, the cups of tea or the afternoons we spent together.

Instead, my mind chose the moments I wasn't proud of.

The times I was impatient.

The conversations I cut short.

The day I thought, "I can't do this today."

Those memories felt much louder than all the good ones.

I thought they defined me

For a long time, I convinced myself those moments said something about me.

That I'd somehow failed Grandma.

That if I'd been more patient...

More understanding...

More resilient...

Things would have been different.

Looking back now, I realise I was expecting perfection from someone who was simply trying her best.

What I forgot

I forgot the appointments attended. 

The ridiculous amount of phone calls made.

The visits.

The research.

The countless worrying.

The advocating.

The quiet moments when nobody else saw what was happening but I did.

I forgot that love isn't measured by whether you lost your patience once.

It's measured by everything that came before and after.

If you've ever snapped...

Can I tell you something?

You're probably reading this because you care.

Bad carers don't usually spend months or years wondering whether they were good enough.

The very fact you're carrying guilt tells me how much your loved one meant to you.

That doesn't excuse every moment.

But it does put them into perspective.

What I'd tell the version of me who was living it

Take a break before you need one.

Accept help before you're desperate.

Forgive yourself sooner.

Because one difficult moment doesn't erase years of love.

For a long time, I replayed those moments.

The time I interrupted her.

The sarcastic comment.

The days I wasn't as patient as I wanted to be.

I thought those moments defined me.

They don't.

They were moments.

They were not the whole story.

The whole story is that I turned up.

Again.

And again.

And again.

Even on the days when I was exhausted.

Even on the days when I got it wrong.

That's what love looks like sometimes.