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Blog: Living with dementia while trying to live life to the full.

17 May 2017


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This National Dementia Week, Hilary and Steve from Bromham, Bedfordshire talk about living with dementia and what it’s like caring for someone you love while trying to live life to the full.

Steve and I have been married for 45 years. We raised three wonderful children and had loved spending time together walking, doing yoga and travelling. Steve had many interests that he pursued on his own. A big Manchester United fan, Steve had been involved in local football from school age – first as a player, then a manager and latterly as a lines man. He was also a Scout Leader in our local village.

Professionally, Steve worked as a Project Manager for Royal Mail, before retiring at 54 to set up a small business in our local village, doing plumbing and electrical jobs. He was always on the go and even built our conservatory, extended and fitted out our kitchen, added an ensuite to our bedroom and refurbished our bathroom in his spare time.

That was, until Steve was diagnosed with Lewy Bodies Dementia in October, 2014. I’d noticed that some things weren’t right for a while before his diagnosis. When we were visiting my late sister in hospital in Derby, Steve suddenly didn’t know which lane to take on the island outside the hospital. He had an excellent memory and so this was unusual. He also had trouble using a map, understanding where we were when we were out walking and he didn’t know his left from his right. Driving became an issue, he had problems judging distances and processing what was going on around him. To be honest, it was a huge relief when the consultant advised Steve to stop driving.

He was also becoming increasingly forgetful and disorientated. He frequently left tools and old towels at customer’s houses – there always seemed to be someone on our doorstep with something he had left behind and through the night, Steve became disorientated when trying to find his way to the bathroom. I put it down to sleep walking, but now I realise this was another early indication.

It took some persuading for me to get Steve to see a doctor and when we did, his diagnosis was devastating for us both. But we’ve been determined to try and lead as normal a life as possible. As his dementia progressed we’ve had to readjust our lives accordingly. Unfortunately Steve is unable to walk as far as he used to, so we now walk with the Walk4Health from Great Denham. He is unable to keep up with the circuit class he used to go to at the athletics track, so he’s joined a class set up initially for heart patients that is taken at a steadier pace. We’ve also joined the Tea and Talk group at Great Denham, Bedford Laughter Group and we have frequent lunches with friends and family and walk regularly on our own.

The Tibbs Dementia Foundation has been a terrific source of support to us. They’ve helped us to undertake activities and stay connected to the outside world, which could so easily elude you. Steve now regularly plays ‘walking football’ and indoor bowls. He also gardens, walks and plays table tennis with the Foundation. We even recently went canoeing on Priory Marina - an activity set up in connection with Bedford Modern School. I join him for some of the activities, but I like him to do some of them on his own so that I can have a break, meet friends and do yoga and meditation classes, which helps me to look after myself as well as Steve. But, it also means that Steve still has some independence and it encourages him to make friends and have a social life of his own.

Life hasn’t taken us the way we had planned, but we still lead a very busy and active life and have met some wonderful people along the way.

Looking after someone with dementia is hard work and I wouldn’t be telling the truth if I told you I never got cross or never have a meltdown, but if you can get up next day and realise today is another day and remember to smile it certainly helps. I have a mantra that I learned in meditation class, “May I be well, may I be happy, may I be peaceful”. I stick to this as much as I can and believe that if I can be these three things, the rest will fall into place.

In the UK, about 800,000 people live with dementia. It is estimated that around 400,000 people have dementia without knowing. By raising awareness about this condition, it is hoped that more people will be diagnosed earlier, allowing early intervention and helping people to get support.

People who look after someone with dementia can find useful information and advice for carers published by Bedfordshire Police.

Become a dementia friend

The campaign, launched by Public Health England and Alzheimer’s Society, is encouraging people to become a Dementia Friend by watching a short video online or by attending a face-to-face information session to increase their understanding of the condition and implementing their experience on a daily basis. The campaign aims to raise awareness and help create a network of Dementia Friends across England. For further information on the campaign and how to become a Dementia Friend.

Tibbs foundation provides a complete range of services for people with dementia and their family carers, to attend both separately and together, to support cognitive, physical, emotional and overall wellbeing throughout the whole of peoples' dementia journeys.

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