Dementia Isn't Fair 

Nothing about dementia is fair. We all used to be lambasted as children for saying “it’s not fair.” And now, here I am at 30 years old, wanting to scream it at the top of my voice.

My mum has been living with young-onset Alzheimer’s for around two years now. And while I’ve always had a sense of burning injustice, that has always been aimed at the lack of post-diagnosis support available to families, friends and loved ones. Hence the reason for starting Dementia Life. But I don’t think I’ve really turned the lens of injustice and squared it directly at dementia itself.

The Moment It Hit Me

The first moment the unfairness of dementia really hit me was only a couple of weeks ago. I’d been working from my parents’ house. It had been a pretty good day. I’d managed to get work done, I’d taken my dog Orla for a walk with my mum at lunchtime. My fiancée came over to help Mum remove some nail varnish from her fingernails. We had some difficulties with Mum following instructions, but other than that, no issues.

My dad told me that their neighbour had taken Mum to get her hair done. She’d forgotten he’d given her money, so she had paid. He asked if I could pop over to pay their neighbour back. Of course. I took the cash and went to knock on our neighbours’ door.

We’ve known our neighbours for 25+ years. I knocked, they opened and we started to chat. Our neighbour, her husband and one of their children was there with his little boy. And it was during this conversation that it hit me…I’m never going to have this.

This is what coping with a parent’s dementia diagnosis actually looks like. I had a chat with my parents’ neighbour, who’s a little older than my mum, and it was a normal conversation. She was turning around to make sure her grandchild wasn’t up to too much mischief, her husband asked me if I wanted to come in for a glass of wine. While I was stood on the front porch, all I could think was “I wish I could have this, why can’t I have this with my mum.”

I’ve never felt so overwhelmed with grief as I was then. It was genuinely like I’d been bowled over.

The Emotions That Hit After — And Why You Shouldn’t Be Ashamed of Them

And then in comes all the other emotions after a dementia diagnosis that nobody warns you about.

Resentment

I absolutely, 100%, resented everyone in my neighbour’s house at that moment for having a normal family life. I couldn’t understand why they got to have it and I get to have my mum slowly taken from me day by day.

Anger

That resentment caring for someone with dementia turned to anger really quickly. I was so angry that around two years ago, my mum, who had spent her entire working life caring for people with dementia, was diagnosed with something that was going to take her from me slowly. And I was angry that I couldn’t do anything about it.

Shame

I was ashamed for resenting the family life that our neighbours have. I was jealous of them. I know it’s not their fault but I was, I wanted what they had and the shame I felt was about wishing my family could be different.

Sadness

This is the one emotion that just doesn’t go anymore. I’m constantly slightly sad, and that can get better or worse if I see my mum. But after chatting to my neighbour it took me a good week or so to properly recover from that.

If you’re experiencing anger and grief as a dementia carer, I want you to know that every single one of those emotions is valid. They don’t make you a bad person. They make you someone who loves deeply and is facing something profoundly unfair.

Dementia isn’t fair. It isn’t fair on the person diagnosed. It isn’t fair on the families. It isn’t fair on the friends.

From the postcode lottery of getting a diagnosis to the lack of post-diagnosis support. Dementia isn’t fair and we’re going to make sure that people know it.