“Just to let you know your mum just turned up for a coffee...”

My reaction, “for fuck’s sake” - obviously, I said this to myself and not in a reply text. And the truth is I didn’t say it in an angry way. It was truly fearful. It was the moment where your stomach drops, you stop what you’re doing and mutter it at the end of a long breath. A kind of exasperated relief that my mum was with a friend. It was a relief that she’s gone to a friend that I know, and that friend knows that I’d want a message. A message is always good news, it means she arrived. But what if she didn’t. The “fuck sake” was knowing that one day, it won’t be a message, it’ll be a phone call and it won’t be from someone I know. Barely a second had passed. I’d already replied “Thank you for letting me know”.

I knew I had another meeting to do before I could go over to mum’s. Typically I’d walk over, but I thought after my meeting I’d jump in the car, load Orla in the boot, and drive over. My meeting came and went while I was deciding whether to swing by and pick mum up on the way through. I decided against it. I’d leave her and her friend to have a catch-up over a coffee. I assumed it had been a while since they’d done that. I’ve never turned up at my mum’s coffee mornings before, and while there’s a reason to now, I can’t. Mum needs a moment that she thinks is her own.

My mum is not a prisoner. She is absolutely free to come and go, to pop out and see whoever she wants, whenever she wants. The difference? Alzheimer’s. The line between nipping out and sending a search party is now very thin. Before I started working at my parents’ during the day, there was a blind spot. My dad needs to work. My mum was at home alone. None of us would know how mum is. Or where. My mum wasn’t particularly good with a mobile phone before her diagnosis, but she could use one. Now? Not a chance. The preconceptions of Alzheimer’s suggest that if I warned my mum I was coming over, and she’d forgotten, then my visit would be a surprise. That’s probably true but we don’t talk enough about the other side of this. When the person with Alzheimer’s surprises others. I don’t want to add any unnecessary stress to friends of my mum, I don’t want them to put plans on hold or not want to go out in fear that my mum is going to turn up on their doorstep. I’ve spoken to one friend before, caught still in her dressing gown, early morning, by one of mum’s surprise visits. Sometimes mum catches a friend in a dressing gown or coming out of the shower. More often, there’s just a closed door. Mum’s friends still work. They have children, grandchildren, elderly parents of their own. Yes, they’re still there for mum – but every visit is now impromptu.

I haven’t been over there today. For all I know she could’ve gone to our neighbours, or a friend’s or my brother’s. Then again, she could’ve gone out and got lost. In our Dementia Life groups we’ve discussed this. Toeing the line between retaining a semblance of personal freedom and genuine safety. We’ve spoken to families that have sewn GPS trackers into coat linings or a handbag. There’s a million and one ways, none of them a guarantee. As a family we’re avoiding this whole conversation. We know we can’t ignore this for much longer. We need to know that mum is safe, but we don’t know how to open this conversation. It’s not a chat to be had over the dinner table, with a plate of sausage, mash and onion gravy in front of us. Most families that resort to devices like this have had a trigger moment. Ours are in our heads.

If there’s something that no one warns you about when a loved one is diagnosed, it’s the game of ethical tug of war you’ll end up playing with yourself. Decisions like this are two a penny. It could be weighing up safety or freedom. It could be more trivial, I gave up a rented office in town to work from my parents’ dining room. Growing up I remember dad making a bacon sandwich here and there. I think he attempted toad in the hole, once, I’m pretty sure mum took over and finished it. Now, he phones me on a Sunday asking me how long to roast a leg of lamb for. Every time my phone rings, I never know if it’s more culinary advice or whether it’s time to finally make sausage and mash and have the conversation.