Real stories

The practical ways Dementia Adviser Kiran helped Liz and Jim

What we noticed before the dementia diagnosis

'In 2013 Jim had a serious stroke. I wanted us to go to A&E straight away. Jim wanted to “see how it is tomorrow”. Ultimately though, we did end up in A&E, and we left it too late, and his brain was starved of oxygen. He lost the use of one hand, and he lost a lot of his words (neither came back 100%).'

'I don’t know if this was linked to the stroke or the early onset of dementia, but a few years later, Jim had a car accident.'

'It had been dark and wet, and the car was written off. I had noticed, around that time, that Jim didn’t seem himself. Was it connected? I wanted him to see the GP, but he had refused. But something just didn’t feel right.'

Getting tested for dementia

'I asked Jim again if he would come with me to the doctors, and this time he said yes. The doctor said she would ask him a load of questions and see how he got on.'

'Jim was then sent to the memory clinic, and that’s where it all started. They noticed things like his mannerisms. It was more than just his memory.'

'On 1 August 2019, Jim was diagnosed with vascular dementia.'

What a dementia diagnosis meant to Liz and Jim

'When we received the dementia diagnosis, we were both completely surprised. Jim totally shut down.'

'I, however, felt like I’d been punched in the stomach. Vascular dementia? How’s this all going to work? How will it change our life? What are we supposed to do? How long has he got?'

Getting help from a Dementia Adviser

'The consultant was really kind. She told us all about the groups and services in the area and that’s how I heard about Alzheimer’s Society. They ran a dementia café, that we both still attend, as well as other groups just for Jim.'

Our Alzheimer’s Society Dementia Adviser, Kiran, has been amazing.

'Heather, on the Alzheimer’s Society team, recommended the sunflower lanyard, so people might be more patient, for example the supermarket check-out was challenging for Jim.'

'There was one time that he couldn’t work out how to pay. The woman at the till was rude and impatient. It was after this that we bought a lanyard via the Alzheimer’s Society online shop.'

The important role of a Dementia Adviser

'Jim uses a whiteboard and puts appointments on his own phone. This was on Dementia Adviser Kiran’s advice. Otherwise, I just repeat myself over and over.'

This is why a Dementia Adviser is so important to me. She checks in on us both all the time. We message each other on WhatsApp.

'Kiran said that learning and forgetting are very different things. There’s no point me waiting for Jim to find a word that’s no longer in the box. It’s gone. He’s not learning to speak.'

'It bothers Jim when he can’t find a word. He gets frustrated. But I tell Jim it’s of no importance. It doesn’t matter. We work on it together.'

Living well after a dementia diagnosis

'Kiran says I’m allowed to blow my own trumpet. She says Jim is looking really well and is happy and his needs are met, but I do make sure I take good care of myself too, mentally and physically.'

'I try to meet up with friends and have time to myself. Jim goes to play bowls every Monday and walks there and back by himself.
Dementia hasn’t stopped us. It’s just changed our way of life.'

'Dementia. There’s nothing you can do about it. That’s what I would say to people. You just have to adapt your lives.'