I live with dementia. How can you make my stay in hospital better? (And shorter)

Get rid of the noise. The bleeping. The pinging. The clangs and the ringing.

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Allow night time to be night time, dark and quiet.

Make it more like my home.

Have sofas, armchairs, pictures…

Help me to walk when I want to.

Help me to have a dignified shower or bath of my choosing.

Help me to the toilet, not a commode. And don’t leave me there for half an hour.

Reduce the people confusion, the movement, the congestion, the huddling…

There are just so many of you.

And for god’s sake don’t talk across me. It makes me angry.

Enable me to know where I am, what time and day it is…

Help me eat when I want to, provide finger foods, delicacies, simple treats.

Just put them in front of me regularly. Don’t ask if I’m hungry because I’ll always say no.

Remember my taste isn’t very good now, so please don’t give me bland mush.

Provide coloured plates and bowls so I can see food, with high lips so I can get the stuff onto the spoon.

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Give me drinks in my favourite mug or cup.

And don’t just ask me if I want a drink. Give me one anyway.

Make sure I can hear and see.

Make the light brighter by day.

Do things with me, every day…singing, reminiscence, jigsaws, reading, music…

Use colour and decoration to make this place feel more like my home, calm, enjoyable.

Stimulate good feelings. I may not remember what you said or what we did.

But I will feel better for hours.

Touch me. Hold my hands. Put your hand on my arm.

 

Smile at me. Take time to smile, look at me, use my name.

Tell me who you are. Every time.

Wear scrubs at night. Then we’re all in nightclothes together.

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Explain what you are doing to me. Make sure I understand. Hold my hand. I may not like what you’re doing.

Talk to me about who I am. What I’ve done. My work, my hobbies, my wedding, my childhood.
See me. Not dementia. We are all different.

I’m not demented. I have a disease, and mine is different from everyone else’s.

So find out who I am.

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You see, I’m an expert on me.

Shaking the foundations

Well I’ve had a reminder that dementia does get worse as time goes on.

It’s easy at the earlier stages to forget about what’s coming. You just carry on as before and occasionally have a day when things goes dark and weary. Then you get back up again.

Anyway, why would you want to think about life in five years’ time? Best to ignore it, after doing the right things like power of attorney.

So I was cooking supper. What was it? Simple baked potato, chicken, kale, carrots…

But somehow things became disjointed. I didn’t get each part timed right…undercooked the chicken and had to put it back in the oven, so the kale was overlooked…

And the work area became cluttered with stuff. My iPad, oven gloves, saucepans, the day’s post, plates, cups, knives…and I became confused. There were just too many things to think about. My brain couldn’t hold it all.

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And I shouted and wanted to swipe everything onto the floor. Just clear the whole space. Start again or walk away.

Then yesterday I went to an evening meeting. Which meant driving in the dark, and to a venue which was incredibly difficult to find. Dark, wet, shiny surfaces, headlights not bright…I really felt unsure and lost for a while.

I’ve become a less steady on my feet in the dark. In fact I nearly fell over the other night going to the loo. Need to put a light on really.

I walked Lupin around some big fields the other afternoon and misjudged the light. So the last mile was pretty dark, on uneven fields. Very challenging now, lurching from side to side, though not quite to the ground. Even felt nauseous with the lack of stability.

What I felt for the first time was my foundations being shaken. It’s a very destabilising effect. You immediately lose some confidence, and the future looks suddenly bleak, worrying.

Your home seems solid, safe, reliable. And you just live in ignorant certainty that your home will always be solid, safe and reliable. So you don’t think about it, or worry.

But try standing up during an earthquake. I was teaching in 1989-ish, or whenever the Shropshire earthquake happened. The floor rippled, swayed a little. Apparently our cooker at home moved an inch forward and back again.

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And it shakes you to the core, because what was certain is no longer certain, and will never again be certain. Life changes in that instant.

Everything is utterly changed.