Things Nobody Told Me

A quiet heads-up before you read on: this one's raw. Not medical, not legal, just honest, written from real moments with my own mum and dad. If you're in the middle of this yourself right now, go gently with it, and only read on when you feel ready to.

Our family went through Dad's illness and Mum's dementia at the same time. This isn't a guide. It's just some of the things I wish someone had told me, before I had to find them out for myself.

I wish someone had told me it was OK to sit in silence. I remember when Dad was told he couldn't have an operation to remove his tumour, as the operation would kill him. It was also at that point they asked if he'd have a PET scan. Without them telling us his cancer had spread, I knew from that exact moment he was facing a terminal illness. I'll never forget asking the oncologist what the chances were of him getting fitter and eventually having the op. I'll never forget his reply: "unless he's climbing mountains in the next few weeks." That was our answer, there and then. The journey home from Wrexham, my dad and I cried together but barely said a word to one another, and just held his hand all the way home. I didn't have words, and he didn't either, but we knew we were there for each other without saying much at all. No words were needed, I guess.

I wish someone had told me that thinking "it would be kinder if this ended sooner" doesn't make you a bad person. I sat with the end-of-life stage, and with thoughts I didn't expect to have, that it would be better if she passed quickly rather than carry on suffering, that what she was living through by that point wasn't really a life. I know now those thoughts are a real, documented part of what carers go through. I wish someone had told me that at the time.

I wish someone had told me that exhaustion makes you feel guilty, even when nothing was your fault. I remember feeling incredibly tired and exhausted in Dad's final weeks. Earlier in the day he'd been incredibly unwell and in pain, and I'd tried to make him as comfortable as I could. That evening I was so tired I fell asleep all night, and when I woke the next morning, I discovered Dad wasn't in bed. I rushed downstairs to find him on the floor. He was really unwell and couldn't walk or lift himself up. I had to call the palliative team, and that was the last day he'd ever spend at home. He went to the hospice. I remember feeling incredibly guilty that I'd fallen asleep. Had he been calling for me? How long had he been like that? I felt like a terrible person. But I remember thinking, I'd done everything I physically could to make sure every minute of every day he was comfortable. I did my very best to support him, and as a human, it's okay to be exhausted. Sadly the timing wasn't great, but it wasn't my fault.

I wish someone had told me that finding out details late doesn't mean you failed to ask the right questions. We only found out Mum's diagnosis included mixed dementia when it appeared on her death certificate. Throughout her care, we understood it as vascular dementia. That's what we were told, what we researched, what we prepared for. Seeing "mixed dementia" written formally for the first time, on that document, was a genuine shock.

I wish someone had told me that trying to do it all at once isn't sustainable, and isn't a personal failing. When my dad was going through chemotherapy and my mum needed care for her dementia, I was also working. I spent a lot of that time travelling, trying to be there for my dad's treatment, trying to arrange for someone to sit with my mum for a few hours, trying to hold my job together through all of it.

I wish someone had told me that language matters more than I realised. One thing that helped, almost by accident: I found myself saying "we worry when…" rather than "you can't…". It kept the conversation about our concern, not her failing.

I wish someone had told me you don't have to get every decision perfect, just honest with yourself. Before any major decision, especially the one about Mum's care home, I always came back to the same small check-in: is this better for her health and wellbeing, is it possible for me or someone in the family to manage this ourselves, and have we genuinely explored all the other options? It didn't make the decision easy. It made it one I could live with.

I wish someone had told me that a goodbye can still be enough, even rushed, even short. Near the end, I was refused entry outside visiting hours, even though I'd made the hospital aware I was travelling from York. I got five minutes with her before it started. In those five minutes, Mum said "lovely boy." She used to say that to me as a kid. Those were the last words she ever said to me. I'll cherish them for the rest of my life.

I wish someone had told me about the sound, before I heard it. When we got to the hospice, we were told about secretions, sometimes called the "death rattle," and that certain people may experience this at the end of life. It was like a pre-advance warning. They told me that if Dad had these secretions, he would be genuinely comfortable, and while it might not sound great, they wanted to prepare and comfort me in advance. I remember asking what secretions actually were, and the nurse told me, apologetically, that I might have heard it called the death rattle. Forty-eight hours before Dad passed, it started. That's a noise I won't forget. But that pre-warning, knowing Dad was comfortable and not in pain, really did comfort me, and let me manage that part of it.

I wish someone had told me that you get through it on autopilot, and that's not a failure either. Looking back, you get through it on autopilot. Work, small talk, the things that normally matter start to feel insignificant. I'll always be grateful I got to say a proper goodbye.

That's it. Nothing here is advice. It's just what actually happened, in case any of it helps you feel less alone in whatever you're carrying right now.

This is general information, not a substitute for professional emotional or medical support. If anything here has brought up more than you expected, Admiral Nurses (via Dementia UK) offer free specialist support for exactly this kind of thing, and Carers UK has a helpline for practical and emotional support. You don't have to carry this alone.

You don’t have to navigate it alone.