After dementia forced him into early retirement, Pete Middleton has found fresh opportunities through Alzheimer’s Society.
‘I feel like a bit of a fraud sometimes because I’m so positive, but this is how I am,’ says Pete Middleton, who was diagnosed with Alzheimer’s disease in 2019, aged just 64.
Pete draws on his genuine optimism to raise funds and awareness, and he’s thankful for the support he’s had from Alzheimer’s Society.
‘The Society has made sure my life isn’t empty, in fact it’s brimming full,’ says Pete, who thrives on being involved in all sorts of ways.
‘Dementia is a fuse burning, and at the end is a barrel of dynamite. I’m not just going to sit back and watch it burn – I’m going to make the best of things.’
Breath of fresh air
Pete, now 66, lives with his wife Pam near Kettering in the East Midlands, but was born and raised in south London.
Having joined the RAF aged 20, he served for 18 years as an aircraft engineer. Pete spent 11 of these years in Germany, where both of his daughters were born. He later worked as a technical author and a senior consultant in business information systems, which included writing manuals for the Ministry of Defence.
After being diagnosed with type 2 diabetes, Pete wanted a more active lifestyle, so become a Police Community Support Officer.
‘I took a 50% pay cut but my quality of life went through the roof,’ he says. ‘I was helping vulnerable people – it was a job I loved.’
Pete realised around four years ago that he wasn’t coping as well as usual at work. He initially put this down to having taken on more responsibility, but it soon became clear there was something more going on.
‘I was at the garden centre one day with my wife and daughter, and I just burst into floods of tears,’ he says.
Diagnosed with anxiety and depression, which he was sure he didn’t have, Pete changed roles within the police. He found himself making uncharacteristic errors, like going to the wrong place for a meeting. Eventually a new police doctor suggested that he might have dementia, and a brain scan led to a diagnosis of Alzheimer’s in January 2019.
By the time he had to take early retirement, Pete had been on sick leave for two years.
‘That was quite a sad thing, as I wanted to leave with dignity, not fade out like I did,’ he says.
However, receiving the diagnosis was helpful.
‘It was a breath of fresh air. My wife and I said, “Thank goodness for that.” At least we knew what the problem was and could accept it and build the future.’
Watch a short video to find out more about Peter's experiences of dementia:
Pete’s wife Pam acts as his ‘reminder’, including when she’s away overnight as part of her job supporting people with learning disabilities.
‘She’ll call tonight to remind me to take medication and lock the door,’ says Pete, who describes his family as ‘100% supportive’.
As well as memory problems, which Pete also tries to combat by using a whiteboard for reminders, communication can also cause him difficulties.
‘If I’m focused, like having a meeting or giving a talk, I’m fine. But if I don’t have a focus, my decline begins to show,’ he says. ‘If I speak to my wife later, with my guard down, I’ll start stuttering or not finishing sentences.’
Pete can feel vulnerable in busy situations too.
‘The outside noise and hubbub become oppressive,’ he says. ‘At my daughter’s wedding last year, I had to get out of the gazebo. I fled, or I would have burst out crying.’
Pete says Alzheimer’s Society has been there for him ever since his condition was confirmed, when he was handed a copy of The dementia guide, for people recently diagnosed.
‘It’s the best thing since sliced bread,’ he says. ‘It covers things like relationships changing, getting support and planning ahead.’
Pete contacted the Society as soon as he got home and was offered further support.
‘From the very first second, Alzheimer’s Society has never left my side,’ he says. ‘They get it and they totally understand.’
Pete became heavily involved in volunteering at dementia cafés and speaking in public about his experiences. He’s joined other people with dementia in influencing our and others’ work through Dementia Voice and the 3 Nations Dementia Working Group (3NDWG). He’s also on a steering group that supports our partnership with Santander.
‘The Society can use me to get the message out there and it’s given me a purpose in my retirement, so it’s quid pro quo,’ he says.
‘I know it sounds trite, but I truly believe that dementia is another station on the journey of life.’
Rather than worry about himself, Pete’s main fear about the future is the effect his dementia will have on his family.
‘I know what my fate will be and I’m strong enough, but I want to do everything I can to ease the future burden on them,’ he says.
‘My wife will have to take on extra responsibilities, and fret and be sad – that’s the worst thing about living with dementia. But I know Alzheimer’s Society will be there for her too.’
Not the end
The pandemic has caused Pete great frustration, though he’s also taken advantage of new opportunities.
‘All the dementia cafés and things I used to do face to face shut down overnight. I miss them,’ he says. ‘But I did do a video diary for a Channel 4 documentary about the lockdown, to get the message across that you can live well with dementia.’
Pete was delighted to receive his first dose of the vaccine in mid-February, even if the experience was a little unnerving.
‘There were lots of signs and people in masks marshalling other people in masks to and fro, in socially distanced lines,’ he says.
‘I began to feel a panic attack coming on due to sensory overload, but I managed to hold it together until the nurse asked me for my date of birth, which I completely forgot. Luckily, I had written it on a piece of paper just in case.
‘Everything went like clockwork after that. I wore my hidden disabilities lanyard and a badge with the words “Please be patient” on it, which also helped.
‘I’m very pleased I’ve had it so quickly.’
Pete is now looking forward to visiting his 97-year-old mother as soon as possible.
‘I want to go and sit with her, have a game of cards and let her know she doesn’t have to worry about me,’ he says.
He had also hoped that having the vaccine would increase his chances of going on the Mediterranean cruise that he and Pam had re-booked for May. However, it has again been cancelled and Pete doesn’t feel he’d be able to cope with it in a year’s time.
‘It was to celebrate our 45th wedding anniversary and was intended for us to record some wonderful memories together, while I still have capacity,’ he says.
‘When you’re young, you think life goes on forever, but it’s finite and I now don’t know how much time I’ve got.’
As the vaccination effort grows and lockdown restrictions can hopefully continue to lift, Pete is keen to get back to helping others in person.
‘I’d like to talk to more newly diagnosed people with dementia, to tell them it’s not the end of the world,’ he says.
‘I just can’t wait for the next time I can help.’
What can you do to help?
You can ensure that more people with dementia receive the same support and opportunities as Pete.