Dementia Action Week

Jan Ellis explains how three years ago she became a carer for her husband, Pete.

“You should change your wills and set up lasting power of attorney.”

It was the last thing Pete and I were expecting to hear.

Pete had been having problems with his memory. He’d forget the usual things like where his keys were and forget to take his phone with him. But it started to get worse and he was struggling at work to remember important information and passwords. He worked in finance, but eventually lost his job as he kept making mistakes.

We’d been visiting the Leeds and York Partnership NHS Foundation Trust’s memory clinic for around two years. They’d been scanning his brain looking for changes over time, and they thought the problems were down to anxiety and stress. We were in denial anything was wrong, but then we got the shock of our lives. At 64-years-old, Pete was diagnosed with Frontotemporal Dementia.

In that same appointment we were told straight away to change our wills and that I should set up lasting power of attorney. It was a horrific shock. It’s mostly a blur now, but coming out of the appointment Pete didn’t understand what it all meant. His lack of cognition from the dementia meant he didn’t realise what the diagnosis meant, and he was looking to me for answers. I felt ill but didn’t want to panic Pete, so I acted as normal as I could. Looking back now, I could see how it’d crept up on us.

Frontotemporal dementia is an uncommon type of dementia that mainly affects the front and sides of the brain (frontal and temporal lobes) and causes problems with behaviour and language. Dementia mostly affects people over 65, but frontotemporal dementia tends to start at a younger age and most cases are diagnosed in people aged 45-65. People with dementia whose symptoms started before they were 65 are often described as ‘younger people with dementia’ or as having young-onset dementia. Like other types of dementia, frontotemporal dementia tends to develop slowly and get gradually worse over several years.

Pete was referred to a dementia nurse, but he didn’t understand why they were visiting us, so I had to do all the talking. We were visited by a few different nurses and I think this added to his confusion. The best thing that’s happened to us is finding out about the Peer Support Group the council runs. Pete calls them the ‘Dementia Squad’ and gets really involved with everything they put on and do. He’s still independent and he gets about on the bus daily without too many problems. One of the problems is that Pete can forget to eat and drink, so luckily when he’s out he’s with people who know about his dementia, so they’ll remind him. Pete was involved with the Every 3rd Minute Festival in Leeds recently, a festival of ‘theatre, dementia and hope’. He was one of the curators for the festival, and while he didn’t really understand what he was doing, everyone was really lovely, and it kept him busy. He loved it.

We never expected our lives to take this turn and I never imagined I’d become a carer for my husband, especially after 20 years of marriage, but we get by being organised. I still work two days a week at Leeds University and have our grandchildren three days a week, so I need to plan everything in advance. I do a weekly and daily timetable for Pete, so he knows what’s on and where to be. He gets restless when he’s not busy, so we keep it structured. It is hard, but we want him to stay as engaged with society as possible and we work hard on that, as a lot of people can become isolated. We live in Headingley and I’ve visited the shops and restaurants we visit regularly to explain about Pete so they know he’s not being rude or ignoring them. The problem is, dementia is an invisible illness, so people looking at him wouldn’t have any idea. We had to leave a café not long ago because they wouldn’t let us join two tables, so we could all be sat together. Pete was clearly getting agitated and, in the end, we left. I explained to the staff on our way out and they admitted they’d not realised and said they were sorry. When you’re caring for someone, you learn the little things that can make all the difference and affect their entire day. It’s not something we would have even thought about before, but I think people need to have more awareness of people like Pete who need a bit of extra care and attention.

Of course the ‘what if’ is worrying, and we don’t know what the future will hold for Pete, but we have to live in the now and we’ll deal with the more severe symptoms when they come. Every person whose lives are affected by dementia has a different story to tell, and we’re quite lucky that Pete still has some independence. We can see he’s deteriorated in the last year and his dementia is gathering momentum, but how we’re doing things is working for us at the moment. Everyone loves him and is so understanding. He’s always been a cheeky chappy!

Find out more about the Trust’s Memory Service, Younger People with Dementia Service, Memory Support Worker Teams and Older People’s Inpatient Services, for people with acute mental health needs including dementia.