One day at a time. Taking things day by day. Take each day as it comes. Each one of these has the same basic proposition: don’t think about tomorrow. As propositions go, it can be a comforting one. There’s a reason it’s a regular at funerals, at hospital bedsides and in the inane chatter of daytime chat shows. It sounds caring. It comes across as wise. It’s utterly meaningless. Especially to someone whose loved one has dementia.

Dementia is progressive. It’s only going in one direction. At which point the day by day advice isn’t just meaningless, it’s irresponsible. When someone in your family has dementia, there are things that have to be done. The legal conversations, the financial plans, the discussions about care, capacity and end of life – all brutal, all necessary and preferably done when the person can have a say in them. The decline doesn’t plateau because you’ve decided to look away.

The Plans That Don't Exist Anymore

Previously I’ve written about how my parents’ retirement plans were upended by my mum’s diagnosis (read the full article here). They had a plan for the future, it involved a cottage on the coast. I don’t know what coast, it was only mentioned once. And that was in a state of melancholic nostalgia for something that could have happened. My dad’s not the only one to have a plan. Most people do. It might be a campervan, or a village community allotment. It could simply be precious time spent doing nothing, together. For many, the time that would have been spent pondering what coast to look over is now spent questioning: how long can we manage at home? What happens when we can’t? These aren’t the questions anyone wants to try and answer with a cup of coffee at 6.34am on a Wednesday morning. But so many people are.

LPAs. Advanced care plans. Wills. Care homes. Care preferences. A lot of admin? Yes. A lot of paperwork? Yes. Difficult discussions? You bet. How your loved one gets a say in their future? This is it. Each of them is best done early – while your loved one still has capacity. While they can make decisions. These decisions shouldn’t be made at a time of crisis, when they’ve just found your loved one lost in the street again. They’re not decisions to be made with the police sat in the kitchen.

We took eighteen months to sort the LPA for mum. Eighteen months of avoidance, putting it on the back burner, and making sure we’ll get to it this week. In truth, we’re still sorting a lot of it now – we haven’t finished. I’m telling you this so you know, none of this comes from a position of moral superiority. It comes from me being someone who took things “one day at a time”. The truth is, each extra day that passed took us further from where we needed to be. I’m telling you, so you don’t arrive at this moment where it’s too late to be comfortable.

The Tension

There’s value in slowness. Don’t walk out of the memory clinic, diagnosis in hand, into a solicitor’s. If you park up at Tesco and suddenly burst into tears, it’s probably too soon to be making these decisions. The difference between allowing yourself to sit with the diagnosis and pretending it doesn’t exist is slim but you need to find it.

Emotionally, the day by day approach makes sense. I really don’t want to draw the timeline of my mum’s care. Or wonder whether we’ll have a family holiday again. I don’t want to think about the day I walk through the back door of my parents’ house and my mum looks at me blankly. These thoughts don’t make my morning any better. But not thinking about them doesn’t mean they won’t happen. Practically, legally, financially we have to plan. We have to plan so that when those things do happen, we can deal with the emotions of it, not the admin.

I’m 30. I’m getting married next year. I’m thinking about starting a family. At no point in my twenties did I expect to be doing any of that while working from my parents’ dining room to make sure my mum is okay. I honestly have no idea, when I’m standing at the end of the aisle, watching my bride walk towards me, whether my mum will know who I am.

So sure, you can take your days one at a time. But make sure you know what you’ll do on day 36, or 284 – because your loved one won’t.