When Grandma was diagnosed with Lewy Body Dementia, I expected sadness.

I expected frustration.

I expected to feel helpless watching someone I loved slowly change.

What I didn't expect was guilt.

Not just once.

Almost every step of the journey.

Looking back now, I realise guilt quietly followed me from the day of her diagnosis until long after she had died.

It just kept changing shape.

The guilt of not noticing sooner

Even after the diagnosis, I found myself replaying conversations in my head.

Were there signs I'd missed?

Had Grandma been trying to tell me something?

Did I dismiss things because they seemed like ordinary ageing?

The truth is, hindsight is incredibly powerful.

Once you know the diagnosis, every forgotten conversation suddenly feels significant.

At the time, though, I was making decisions with the information I had.

That's something I have to remind myself of even now.

The guilt of making decisions

One of the hardest decisions we made was choosing a care home.

You spend hours researching.

Reading reviews.

Visiting homes.

Trying to work out where your loved one will be happiest and safest. As well as will they even accept her at that care home.

Then you make the best decision you can.

After Grandma died, I questioned that decision endlessly.

Could I have chosen somewhere different?

Would another home have changed what happened?

Those questions kept me awake far more than they should have.

The guilt of wondering if I'd missed something

Lewy Body Dementia causes confusion.

Hallucinations.

Changes in perception.

Because of that, there were times when Grandma said things that we simply couldn't make sense of or even it sort of made sense but her sense of reality was so warped at the time you didn't believe what she was saying. She had lied and made accusations that we could honestly disprove so you you would find yourself not believing the next "crazy thing" she came out with. 

After she died, I found myself wondering whether she'd actually been trying to tell me something.

Had she been asking for help?

Had I dismissed something important because her illness made it difficult to know what was real?

Those thoughts stayed with me for a long time.

The guilt of losing your patience.

There were days I was tired. Days I was frustrated. Days I answered too quickly or wished I had five minutes to myself.

I think every carer has those moments. I know my family did and I know we snapped at each other more times than I can count over it all. 

The difference is that after someone dies, those moments can become the only ones you remember.

But they shouldn't be.

Because they were never the whole story.

The guilt of wanting a break.

There were times I wanted one evening or just one full day where dementia wasn't the centre of everything.

At the time I felt selfish.

Looking back, I realise I was simply exhausted and actually it genuinely is ok to have a break from it we all do. This is why respite care exists for carers. 

The moment I realised I was carrying guilt

It wasn't at the funeral or when we scattered Grandma's ashes.

It wasn't even when I was writing my statement for the coroner.

It happened when I stood in court and answered questions under oath.

Speaking those memories out loud made me realise how much responsibility I'd quietly placed on my own shoulders.

I hadn't been carrying grief.

I'd been carrying guilt.

Two strangers changed something

After the hearing finished, two people came over to speak to me separately.

One was the police representative.

The other was one of the coroner's support officers.

Neither of them knew me.

Yet they both said exactly the same thing.

"Stop feeling guilty."

It caught me completely off guard.

My own family had told me that countless times.

But somehow hearing it from two complete strangers, who had simply listened to me speak, made me realise that my guilt had become visible.

The police representative also said something I'll never forget.

She told me she would have chosen exactly the same care home we did.

I don't think she'll ever know how much that one sentence meant.

What I've learned

I don't think guilt ever disappears completely.

I still have moments where I wonder whether I could have done something differently. But I've also learned something else.

Every decision we made was made because we loved Grandma.

Not because we were careless.

Not because we didn't care.

Because we cared deeply.

When you're caring for someone with Lewy Body Dementia, you make hundreds of decisions.

Some will feel right.

Some won't.

But none of us gets the benefit of hindsight while we're living through it.

Looking back now, I've realised something else.

I judged every decision with the benefit of hindsight. I knew how the story ended, so I kept expecting the version of me who was living it to have known that too.

But she couldn't.

She could only make the best decisions she could with the information she had at the time.

**So if you're carrying guilt too, remember this. You are judging yesterday's decisions with today's knowledge. The person living through it never had that luxury.**

If you're carrying guilt too

Can I tell you something I wish someone had told me?

You're allowed to question yourself.

You're allowed to wonder if you could have done more.

Most carers do.

But don't let those questions erase everything you did do.

You turned up.

You worried.

You researched.

You advocated.

You loved them.

Sometimes, that has to be enough.