In 2012 Nick developed epilepsy, a side effect of the brain injury, which probably led to the Alzheimer’s. His memory worsened. I found an email in 2017 that I wrote to him saying I think you might have dementia but I doubt he looked at it. But perhaps if the Hub had been there I might have gone to ask for advice. In 2018 our first granddaughter was born. Whenever I go to see the family I take him with me. I also attend all his medical appointments and when he went for a check-up for his epilepsy I did mention that his memory was not too good but nothing was picked up. Then in 2022 he decided that he wanted to take the bath out of his bathroom and put in a shower, something he would have done just like that in the past. So he took everything out, cut it up and put it into his wheely bin. But then he said, ‘Rosemary I need help’. He had no idea what to do. So I had to get a plumber in to do it for him. I told the neurologist who said he would refer him to the memory clinic. Even that didn’t mean much to me.

In January 2024 we went to Beechcroft and the consultant said at the end that he thought it was Alzheimer’s. He gave us a booklet about caring and off we went. I googled and found Age UK’s information for carers in West Berks and got going. Beechcroft got my email wrong but I chased it up and went on the six-week course for carers. What an eye opener! Absolutely brilliant. At last I stopped being annoyed with Nick for not being able to do his bathroom. He can’t follow stages. What a surprise! All the things I didn’t know, it was just incredible. What with that and with him being put on medication, it’s helped, it really has. Since then I’ve been looking around for help. I managed to find the Men’s Shed at Fair Close, absolutely perfect– it’s got Nick out of the house. He’s getting less able but he just likes being with people. He’ll go to Sainsbury’s on the bus one day to get some sugar and then again the next day to get some flour. Just to get out of the house and see people. He now goes to the Camellia Club at Fair Close, again absolutely amazing, they collect him on the minibus and bring him home again. Things like this have been just lifesavers. Having not had epileptic fits for five years or more, in the last six months he’s had three – which may be due to another medication that’s he’s started and I’m trying to get hold of the doctors. There’s always challenges, I’m always on my toes trying to find out something. But if all this information was available in one place it would be amazing. Meals on wheels has been a lifeline – Nick used to be a brilliant cook but it’s now got to the stage where he doesn’t really know how to follow a recipe – and actually a meal arriving at lunchtime, as long as he eats it, is fantastic.

I have already looked round care homes and taken Nick to friendship days to see what the places are like. I also meet up with people who were on my Understanding Dementia course which is useful – just people to talk to.

I think anything to help the general public know about dementia would be good. Luckily I can google, IT is my subject, but a lot of older people aren’t able to do this. What would I like to see at the Hub? It would be amazing if it was somewhere to get one-to-one advice and ideas from others, both pre- and post-diagnosis, and to find out about resources both within the building and elsewhere. Also somewhere that people living with dementia could participate in activities and socialise with others, particularly in the afternoons. And where carers could meet other carers either with their family member or on their own to talk and share information. Also could it have easy parking – free if possible. The more help we can have the better – please!