Friday random ramblings

Keywords post diagnosis appear to be ‘adapt’ and ‘adjust’…..

Music

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!

Mentoring

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……..

Thank you

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.

 

A tranquil image to end the week: Blackpool like you've never seen it before!
A tranquil image to end the week: Blackpool like you’ve never seen it before!

About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

3 thoughts on “Friday random ramblings

  1. Wendy, don’t remember whether I mentioned this before. Are you familiar with Dementia Mentors (dot) com? It is available online, with one-on-one mentoring thru video chat, or video chat in groups. It would be over 2 hrs for me to get to young-onset group physically, but I join in weekly from my living room. Some people are resting on bed, or in housecoat even, so don’t feel like you need to dress up. Some use $20 webcam to participate, and some use iPad. I think you will really really like it!! — Tru

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