After battling a stream of seemingly insurmountable obstacles to be together, Hilary and Pauline Nowell are used to handling problems with a united front.
And that’s exactly how they are dealing with Pauline’s diagnosis of Vascular Dementia: together.
‘’We’ve always known we were together in it,’ says Hilary, 84. ‘Pauline doesn’t want it to be something that, after all these years, breaks us. It won’t. When the love is there you can climb every mountain. And we will do.’
Pauline, 85, agrees: ‘We can talk to each other in a way that is very precious,’ she says. ‘We both know equally that we are in it together.’
The couple met in 1955 when Hilary was 16 and Pauline was 17. ‘I was on a family holiday, pancha tulasi names ’ says Hilary.
‘It was somewhere new and unknown at the time. Lo and behold Pauline walked along the beach. From the first time we met there was chemistry. It didn’t matter that she was a girl. I was just in love with her as a person.’
They knew they were soul mates. But, because Hilary’s mother disapproved so strongly – not uncommon in those days – they couldn’t be together for over a decade.
Finally in 1970 the couple exchanged rings before buying a house the following year where they raised their son and daughter. But they had to wait until 2014 and a change in the law before they could get married.
‘Our wedding day in 2017 was the happiest day of our lives,’ says Hilary. ‘We had battled everything along the way and felt so grateful to be wife and wife at last.’
Sadly, it was barely two years after their wedding that Pauline was diagnosed with Alzheimer’s and Vascular Dementia.
‘We’d been married a year when I started noticing things were different,’ says Hilary. ‘Pauline didn’t want to get out of bed sometimes and didn’t remember things we had on like appointments.
‘It was very hard for Pauline at first. She had been Director of Social Services and was used to having a lot of independence and helping people. She didn’t need to but she kept saying she was sorry this had happened.
‘But we have found enormous support from the Alzheimer’s Society. We joined a group: Singing for the Brain. We’re friends with another couple.
‘At one particular session the husband turned to me and said: ‘You’d never know they have dementia would you?’ That’s why we love going.
‘So many people that have dementia think that there’s nothing for them. But the help really is there. We are surrounded by so much love and kindness that gives us a reason to go on.
‘Pauline is changing every day. She doesn’t want to think that I will ever not be able to cope. But I just try and show her every day how much I love her. We have so much to be grateful for.’
The real faces of dementia
A couple in their 80s sitting in a tattoo parlour, having matching love hearts inked onto their arms.
The family who celebrate Christmas every day – with a freezer full of turkeys – because Dad thinks it’s 25 December. The little boy who tells his Mummy that Daddy is ‘broken’ – as she continues to raise him alone. The son who realises something is wrong when his father keeps ordering pork pies.
The motorbike lover who suddenly can’t turn the handlebars. The nurse who heartbreakingly diagnosis her own symptoms. The scientist who has devoted his life to helping them all.
Meet Ron and Sheila, Jules, Caroline and Mark, Grant, Anita, Fran and Tim. They are the real faces of Alzheimer’s and dementia – loving couples and families who know only too well that grief for an old life can make way for a new one you never planned. They know the love, the laughter, the compassion and the fear of facing Alzheimer’s and dementia – the UK’s biggest killer.
This week and next, Metro brings you the truly inspirational stories of how they have coped, how they have laughed as well as wept and how the Alzheimer’s Society has provided them and their loved ones with vital support.
Alzheimer’s and dementia: the facts
The most common forms of dementia (symptoms of a decline in brain function) are Alzheimer’s disease followed by vascular dementia.
Alzheimer’s is caused when plaques and tangles form in the brain making it increasingly hard for it to function properly. Early symptoms include forgetting recent events, struggling to remember words, becoming disorientated in familiar places and finding it difficult to concentrate.
Common early symptoms of vascular dementia include problems making decisions or following a series of steps, such as cooking a meal; slower speed of thought and trouble sleeping. The condition can also cause significant mood changes and depression and make people behave completely out of character.
Dementia is the UK’s biggest killer – and one in three babies born today will develop dementia in their lifetime. The risk of developing both Alzheimer’s and vascular dementia roughly doubles every five years from the age of 65. Women and men are affected equally. Diabetes, obesity, heart problems and high blood pressure all increase the risk.
However, you can significantly reduce your chances of developing the diseases by leading a healthy lifestyle – not smoking or drinking to excess, eating a balanced diet and getting regular exercise. Keeping mentally and socially active is also beneficial.
The third most common form of dementia – accounting for an estimated 20 per cent of cases – is Lewy body. With this condition, tiny clumps of protein appear in the brain’s nerve cells, causing a range of issues including mood swings, problems processing thoughts, hallucinations, difficulty balancing and walking slowly. Although DLB (dementia with Lewy body) can affect people under 65, it is much more common as we age, affecting men and women equally.
There is currently no cure for any of the forms of dementia. But getting an early diagnosis is very important in allowing you and your loved ones to access all the medical and social support available. If you are worried that you have any of the symptoms, your GP will be able to refer you to a specialist who can carry out a range of tests.
If you are worried that yours or someone else’s symptoms may be dementia, download the Alzheimer’s Society symptoms checklist, on alzheimers.org.uk; for more information or support on anything you’ve read here, call our support line on 0333 150 3456 or visit our website.
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