Ananga Moonesinghe, in Luton, sees dementia as a ‘different journey’.
Ananga Moonesinghe, a former radar specialist with the RAF, was left disappointed and frustrated when his final decade of service didn’t bring the reward and recognition he felt he deserved.
‘I worked really hard but didn’t get a promotion in those last 10 years,’ he says.
‘I think sometimes it’s a case of if your face fits. I’ve got used to that, which is why I always play for the underdog.’
True to his word, Ananga, now 76 and living with Alzheimer’s, is striving to ensure that the voices of people with dementia are heard by those in positions of power.
‘We can band together and fight to change the way we’re being treated,’ he says.
Ananga is sharing the challenges, adjustments and opportunities brought about by his dementia diagnosis.
‘I think the important thing is how you perceive dementia,’ he says. ‘I don’t think of myself as having an illness, just a different journey.’
Press the orange play button to hear Ananga’s story in his own words:
Ananga, who lives in Luton in Bedfordshire, was born in the city of Colombo in Sri Lanka, at the hospital where his mother worked.
‘My mother and father both had arranged marriages, but they didn’t like their partners,’ he says. ‘He had an accident on his motorbike and she was his nurse. They eloped and got married!’
Ananga’s father was a lift engineer for a company with connections to Loughborough in the East Midlands, and the family moved to England after he accepted an engineering scholarship.
‘I was lost really, because I couldn’t speak a word of English,’ says Ananga, who was 10 years old at the time.
‘I went to school in Barrow upon Soar and had a wonderful teacher called Mrs Gray, who took me under her wing and taught me English.’
Ananga later completed his own engineering apprenticeship before joining the RAF in 1971.
He worked as a mechanic in air defence radar at RAF Saxa Vord, a radar station in Shetland.
Babycham and boating
The following year, while on holiday in the Lake District, a chance encounter led to Ananga meeting his future wife.
‘I went to a café and a girl was staring at me through the window. I hadn’t shaved for a week, so I thought she can’t be looking at me!
‘We made signals through the window and I thought, “I’ve got to meet this lady.” But I couldn’t find her after I’d come out.
‘Because of that, I didn’t feel like going to the pub but my friend forced me to go, and lo and behold, Joanna and her sister walked in! I got her a Babycham and we started chatting.
‘We went rowing the following day. I thought I’d be the macho man, but I didn’t have a clue how to row a boat. We went round in a circle!’
The couple got married in 1974, two years to the day after they met, and have two daughters and five grandchildren.
After spending 22 years in the RAF, Ananga worked in corrosion engineering and then on the railways.
‘About two years before I retired, I was forever losing my keys. Joanna thinks it might have been the start of things,’ he says.
Ananga also faced challenges with his language.
‘In my head, I knew exactly – you take a jug and pour water into a glass. But I couldn’t remember the word for jug,’ he says.
Having initially put such problems down to old age, Ananga eventually went to the doctor, before receiving a diagnosis of mild cognitive impairment from the memory clinic. Mild cognitive impairment is a condition in which someone has minor problems with their mental abilities such as memory or thinking.
‘I went to the memory clinic for about two years after that. I noticed I was forgetting more and more – my short-term memory was gone,’ says Ananga.
‘Then in August 2019, they finally said, “You’ve got Alzheimer’s.”’
Ananga can sometimes find it difficult to communicate in the way that he’d like.
‘I can’t always get the sentence out fast enough,’ he says.
‘I find talking to people a lot more difficult, because most people don’t have the patience. And because I can’t express myself, I get frustrated.’
Having dementia has also changed his personality.
‘I was a very sociable person before Alzheimer’s, but I can’t stand crowds and noise anymore,’ he says.
‘I’d prefer to just stay at home reading a book, which I feel a bit bad about, because then I’m not going out with my wife.’
Ananga also went through a spell of having falls, and Joanna is having to push to get him a medical review.
‘Just because you’ve got Alzheimer’s, that means everybody gives up on you?’ says Ananga.
Joanna initially wanted to do as much as she could for Ananga, but was told by a professional that this wasn’t actually helping him.
‘It’s now my job to let him be independent for as long as possible, which I don’t find easy as his wife,’ she says.
The couple have various daily living and mobility aids that help Ananga around the house.
‘I make breakfast and cups of tea. It makes me feel I can do things for myself,’ says Ananga.
Joanna is also keen to point out that becoming a carer hasn’t all been negative.
‘We still find a lot of joy in life,’ she says. ‘We can still go to the pub when it’s not so busy. We still laugh and joke.’
The couple have agreed that Ananga will stay at home for as long as he can, with outside support if needed, before moving into a home when the time is right.
‘Having a plan in place takes a lot of the stress away,’ says Joanna.
Ananga reveals that he sometimes feels like a ‘burden’ on the family.
‘Joanna’s got to look after me, but I worry about her, because she’s not in good health herself,’ he says.
‘I don’t want to think about a nursing home. I’d much rather pop my clogs.’
Following his diagnosis, Ananga and Joanna received support, information and advice from Alzheimer’s Society. We also put Ananga in touch with a dementia café, Singing for the Brain group and cognitive therapy sessions.
‘Before the pandemic, it was fantastic,’ says Ananga. ‘I met people going on the same journey as me. We understood each other, and it was a chance for Joanna to talk to other carers.
‘Seeing the different stages would sometimes prepare me for what’s to come – although I didn’t like it.’
Ananga is involved with a national Dementia Voice group, which meets weekly on Zoom to discuss and influence our and other organisations’ work.
He and Joanna were also among a group of people affected by dementia who recently met our Board of Trustees over a two-day gathering in Leamington Spa.
Break down walls
Ananga is a strong advocate of campaigning, and is set to deliver an open letter calling on the Prime Minister to prioritise dementia and deliver on previous government commitments.
‘Alzheimer’s Society is very good – they speak for us,’ he says.
‘It’s important that they keep hammering on the government’s door, and important that people like us band together to help and give them strength.
‘I think of the Society as bus drivers and we’re the passengers. We want to go in this direction, but the government is the blockade. We need to break down the walls with people power.
‘It doesn’t matter what religion, creed or colour you are, dementia doesn’t discriminate, so we need to get people from all walks of life.’
Despite the challenges he faces, Ananga remains determined to keep pushing for change, and urges others to make the most of what they can still do.
‘Is dementia going to rule you, or you rule dementia?’ he asks. ‘Dementia doesn’t mean you give up on life. You’ve got to carry on.’
How can you help?
£45 can help fund a Singing for the Brain session, bringing together people who are affected by dementia.