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Living with Dementia

Living with Dementia

Tracey Shorthouse - author of 'I Am Still Me' - talks about living positively with dementia

I always say to people that Dementia is the best thing that has ever happened to me because it has made me appreciate life so much more. Every day is a blessing because it’s a day I have fought and won against the dementia. I do so much more now than when I was working, and I feel that through my blog and the talks I do, I am still helping people like I was when I was nursing but in a different way. I love my life. I love going out and meeting new people. The key to living a good life with dementia is adaptation. There is no such word as can’t. You can do anything just have to adapt. And the second most important thing is to pace yourself. I write days off on my calendar to remind me to rest. 

When I first got diagnosed in 2015 with early onset of Alzheimer’s Disease and Posterior Cortical Atrophy, I wanted something to focus on. All my life I have helped others through being a nurse and I still wanted to do that. 
The brain needs stimulation to keep going, so after the initial shock at being diagnosed and the relief that it wasn’t MS as what I first thought and feared. I took stock at what I could still do and if I couldn’t do something I persevered until I relearnt old skills. I had an occupational therapist who used to come and see me and she got me in touch with groups that promoted positivity in dementia. So, I joined them, SunShiners is one that is based for the Shepway, Dover and Deal areas. I also attend meetings for Dementia Action Alliance when I can and get involved with other things like talks. 

I talk to post diagnostic groups, people to have recently been diagnosed with dementia and also the public to bring awareness that dementia can affect all ages not just the elderly. Last May I gave a talk to the local police. I also go to a creative, inspired writing group weekly. I started writing a blog on Facebook as a way for me to use it as a journal and also to help others in the process.
I voluntarily gave up driving after my diagnosis as the PCA affects my visual cortex, perception and spacial awareness is problematic. So, I have to use public transport which is no problem as the buses are quite frequent where I live. One of my bug bears is when they don’t turn up and no tells me what is happening. Then the next bus will appear and the driver will never say why the bus before hasn’t appeared. I think that not just frustrating for me but the everyone else who catches the buses. It’s as if we don’t matter. 

I also use the trains quite a lot as go to London for conferences and meeting etc. It is quite a lot for my brain to contend with. The noise, amount of people, some train stations are complex in what platform to get to, where it is. I find it harder when there is no one to ask for help, if needed. I had to go to Brighton last year and travelling there was very stressful, so on the way back I spoke to an official and told him I had dementia, but that I wasn’t silly or hard of hearing but that my thought processes aren’t always very good. You would be surprised how many people suddenly change the way they talk to slow speaking or shout. He was brilliant, got me on the right train, rang ahead to Ashford so someone met me off the train, and walked me to the right platform so I could go home. No problems at all. 

Colour is also a problem, if there are stairs which are cream in colour then my brain will think it’s a slope, and then it’s quite disconcerting to find they are steps. I have red tape at the top of my stairs as very often I can’t see the top stairs. I can’t always tell with the traffic lights if it’s safe to cross the road, because my brain changes the colour sometimes. Here we have an alarm that sounds when it is safe but not every area has that so I have to keep a sharp eye out what cars and other people are doing. It is problematic and something which the councils should think about in the future. 

You can follow Tracey on Twitter at @TraceyShorty28 and on Facebook.

Tracey has just published her collection of poems 'I Am Still Me' which you can buy on Amazon and Authorhouse.