Keywords post diagnosis appear to be ‘adapt’ and ‘adjust’…..
I’ve always listened to music or had the telly on in the background whenever I’m doing something. Now I have to have silence as everything gets confusing if I don’t and I can’t concentrate. I found that sad to begin with because that’s the time I listened to music, which I love.
However, now I make a point of ‘just’ listening to music so I don’t miss out – a new experience!
When I was diagnosed, I wasn’t directed to anyone who could help or advise me. Wouldn’t it be useful if you were given a ‘Welcome Pack’ whenever you received any diagnosis (mmmm, maybe not quite the right name!). It would contain useful leaflets and websites but most of all the name of someone who could guide you through the initial maize of confusion – but that person would also have had the same diagnosis. I’d be a mentor quite happily. Maybe they exist in some areas in the country – I wish they’d existed in my home town. I asked a local person yesterday and was told there is an organisation which has a contract with the local health service to provide support and information for people with dementia and their carers. They offer 1-2-1 meetings with people offering information and advice…………so why wasn’t I given this information when I was diagnosed? I wonder whether those offering the support also have dementia – I hope so. Such a simple solution but this is an example that NHS services are of no use if the system isn’t robust enough for it to work correctly. I’ll email them now and let you know how I get on……..
BIG thank you to Helen Roberts, a student nurse lecturer at York University who has asked if she could use my blog in class as inspiration for people with dementia.
Equally BIG thank you to Dr Louise Ritchie of University of West of Scotland for using my story and blog to help train Alzheimer helpline volunteers.
It’s not that I think my blog is anything special as many people with dementia use this medium to tell their story. I’m just happy they’re using the blog of someone who has dementia to show people we are capable of making positive contributions to decision making.