Do you remember your best friend from primary school? What about your other friends from that time, or those you had in your first year in senior school? Or what about who you go see now, with the carnage of daily life, when you get a free evening. Are they the same friends from primary school?

I doubt they are, mine certainly aren’t. Some of them will be, there’s always some friends that hang around through thick and thin. But friendships are complicated. They’re fluid, they change and mould, grow and adapt. And families are the same. There’s no better accelerant to that change than an illness and I’d argue, none more so than dementia.

I think that having a friend with dementia must be one of the hardest situations you can possibly be in. I know that might sound counter-intuitive considering I talk all the time about my mum’s diagnosis and how hard that can be. But this is where I want to introduce something I’ve been thinking about a lot lately — the social contract.

The Social Contract

The social contract is the set of unwritten rules that underpin everything we do as a society. It is the understanding that those that are younger, will eventually care for those that are older. Even married couples promise to love and care for their spouse in sickness and in health. I think those that expect to grow old together, at some point, expect to look after their loved one in times of need. They expect times of ill health and, maybe subconsciously, prepare for that eventuality. However, I’d argue very few people expect that dementia will hit their family, despite the fact that 1 in 3 people in the UK today will be diagnosed.

So why is it so tough when a friend is diagnosed? Well, for a start, that social contract doesn’t extend to friends. You might always expect friends to be there for one another if they need help, or an ear to listen or a shoulder to cry on. But to care for them? To keep an eye on them every day to make sure they’re safe, clean and dressed? I don’t think so. Maybe I’m wrong but I’d argue no friend of someone with dementia ever realistically thought that was a possibility.

Two Peas in a Pod

And then there’s the change itself. It is hard to look at my mum and compare her to the mum I remember from my childhood. She used to be loud and outgoing, there was always music on in the kitchen. Now, she’s reserved and quiet. She still loves music but she’s lost the autonomy to put that on for herself.

Now, I’m not going to name my mum’s best friend out of respect, but they have been friends since they were 9. They’re very similar ages, actually very similar life experiences too — in fact it was my mum’s best friend that first recommended that my mum go into care work and they worked together in a residential care home for years. They’ve brought up families together, lived on the same street for years and have husbands who are also best friends. That classic phrase two peas in a pod, that’s them. Between them they’ve been on countless nights out or drunken nights in and there’s probably all kinds of shenanigans in their past that I don’t know about.

For my mum’s friend to see my mum, as she is now, must be incredibly tough. It must be difficult to see your best friend become someone you both used to care for.

The Fear Nobody Talks About

But on top of that, there has to be an underlying sense of fear. If you’re the same age as someone with dementia and you don’t have it, I can only imagine how terrifying that is. Every time you forget a word or lose your keys or walk into a room and can’t remember why you’re there — does that hit differently now? Does watching your best friend go through this make you wonder, even just for a second, whether you’re next? I think it must. And I think that fear is something nobody talks about, because it feels selfish to even think it when your friend is the one living with the diagnosis. But it’s not selfish. It’s human. And I’d imagine it makes every visit just that little bit harder than people realise.

That’s a completely different experience to mine. My mum had over 30 years of life before I was born and from that moment she became my caregiver. She was responsible for me and likely turned to her friends as an escape from the carnage me or my siblings were causing. But now, it’s me who turns to them.

Nobody Signed Up For This

This is where I want to make clear that in this next section I’m speaking generally. My mum’s friends have been incredible and very supportive. But I’d understand if they hadn’t been.

I’d completely understand if they stopped visiting as much, or coming for those long weekends. I’d understand if neighbours and old work friends stopped popping in for a coffee. I don’t, and won’t, expect that life will carry on as normal — I know that relationship will change.

And that’s the social contract again. It doesn’t ask this of friends. It never did. The majority of people who have a friend living with dementia will be the same sort of age. They’ll have children, grandchildren, possibly elderly parents. They have to, and absolutely should, focus on their own families and their own lives. I’ve mentioned before when I was stood on my neighbour’s doorstep watching a normal family evening unfold in front of me — that’s exactly what my mum’s friends should be doing. Living their lives. Nobody signed up for this.

A Message To You

So this is a message directly to them:

Please don’t worry you’re not doing enough. No-one expects you to, and my mum would say the same. Whatever you can do, is more than enough.

We have friends that take mum to get her hair done, or her nails. We have friends that come over for the weekend and make everything feel like the old times. That’s amazing and fills me with so much joy.

And I know that there will be friends of people with dementia reading this, scared, worried and beating themselves up because they haven’t spoken to them this week. Don’t. It’s fine. It was fine before and it is fine now.

We know you’re there if we need you.