Dementia Carer Burnout: I Didn’t Know How Far I’d Drifted

When someone you love is diagnosed with dementia, the mental load doesn’t arrive all at once. It builds. A new worry here, a new responsibility there. Your brain absorbs it without complaint, and your version of normal quietly shifts until the life you’re living barely resembles the one you had before. For me, it took being locked in a pitch-black tank of saltwater to realise how far I’d drifted. This is what dementia carer burnout actually looks like — not a dramatic collapse, but a slow, invisible slide.

I am a massive fan of The Simpsons. I think it’s one of the best TV shows ever produced. One of my favourite episodes was when Lisa and Homer both go in side by side sensory deprivation tanks (S10 E16, Make Room For Lisa, for anyone interested) — when I was a kid watching this I genuinely thought Matt Groening invented sensory deprivation tanks. That was until my fiancée booked one for me. It was just over a year ago now, I was struggling with balancing work, building Dementia Life, home life and mum’s diagnosis. I was stressed and I was probably pretty grim to be around because I simply couldn’t relax. So my wonderful partner decided to book me in for some forced relaxation.

For those that haven’t heard of sensory deprivation tanks, they are like a bathtub, but with a lid. They’re filled with incredibly salty water so you float and with the lid closed it’s as close to pitch black as you can get. You have ear plugs in so hearing is muffled. But there’s no noise anyway so it doesn’t really matter. Floating in water, not being able to see or hear, for an hour...or two. Anyone I’ve explained it to has the same response “An hour locked in a box with nothing but my own thoughts...no thank you” I completely understand that response. The first time I went I was actually pretty nervous, physically not being able to do anything for an hour is probably one of the hardest things for me. I am constantly on the go, if not physically, my mind is always running at 120mph.

What the Mental Load of Being a Dementia Carer Actually Feels Like

The first ten minutes was definitely a novelty. There’s a little floating foam halo for my head, so I spent about a minute making sure that was comfortable. Then I tried to centre myself in the tank, I’m quite tall so I could reach the sides with both arms and both legs, I centred myself and tried not to float out of position. Through the ear plugs I could hear a calming, new age, spa kind of music. I never know how to describe it, not quite pan pipes but it wouldn’t sound out of place in the treatment room of a spa. There’s some slow shifting coloured lights...red...blue...green...white...red...music stops...red...blue...black

Nothing

There was the gentle movement of the water but all sense of where I am in the tank has gone. Genuinely, the moment the lights went out I wasn’t quite prepared for how...black it was. I don’t think I’ve ever experienced nothingness like it. But the lack of visual or audio stimulation didn’t stop my brain. I bounced around from ideas of work, what mum is up to at the moment to why did I agree to be trapped in a giant egg. Aside from evaluating my decision to go floating, I thought a lot about mum. I thought about the moment my parents told me mum had Alzheimer’s, seemingly like all important moments in my life, it happened in my parents’ kitchen. I remember mum not being able to say the word “dementia” — I’ve never seen her looking so upset. Actually, I don’t think upset is the word. She looked decimated. Everything that was my mum had been drained out of her. It was more heart-breaking in that moment than it was originally. I couldn’t escape from it this time. Until I realised I wasn’t thinking of that moment any more. I wasn’t thinking of anything. For the first time in over a year my mind was clear. It was genuinely liberating. The strange thing about having your senses removed is that your sense of time is distorted. All I knew was that I felt calm. Since mum was diagnosed it has been a gradual build up of current responsibilities, like making sure she’s drinking enough water during the day. To trying to plan for the long term like whether mum and dad need to sell their house. It wasn’t until every response to these thoughts was taken from me — I couldn’t quickly Google something, or jot down a note or give my dad a buzz. It wasn’t until everything was off the table that I realised how much was on my plate.

Dementia Carer Self Care Is Not as Simple as “Take a Break”

My fiancée saw what I couldn’t. She could see the burnout around the corner and took it into her own hands to do something about it. I wouldn’t have done. I wouldn’t have known to. After a family member is diagnosed with dementia your normal shifts. Your day fills with more worries, more anxiety and more practicalities but your old demands don’t go anywhere. The school drop off and work deadlines are still there. Just this time you’ve got to do them while wondering whether your mum has left the house and got lost. And the truth is that even if you’re more self-aware than I am, even if you are able to spot when your brain is spiralling, it’s still difficult to do something about it. For me it took every option and every sense being stripped away to finally realise how far from normal my baseline had shifted. It took fifteen minutes of complete blackness and silence for my brain to finally switch off.

Recognising the Signs of Dementia Carer Burnout

The reason I’m sharing this is not to recommend sensory deprivation tanks, though they’ve become one of the few things that genuinely works for me. It’s because dementia carer stress is uniquely difficult to spot in yourself. The mental load of being a dementia carer doesn’t announce itself. It doesn’t feel like a crisis. It feels like Tuesday. You adapt, you absorb, you carry on — and before you know it, the version of you that existed before the diagnosis feels like a stranger.

If any of this sounds familiar, pay attention to that. If someone close to you is telling you that you seem different, or tired, or distant — they might be seeing what you can’t. Dementia carer self care is not about bubble baths and mindfulness apps. Sometimes it’s about someone who loves you stepping in and doing the thing you’d never do for yourself.

Sensory deprivation tanks aren’t for everyone, but I’ve been back for three more floats since. I haven’t had any hallucinations like Lisa in The Simpsons, but there’ll be many more hours in the tank in the future so there’s always the chance.

If you’re supporting a family member with dementia and you’re feeling the weight of it, you don’t have to carry it alone. Our online community groups meet regularly and they’re full of people who understand exactly what your version of normal looks like. Because theirs looks the same.