‘I’d never even heard of young-onset Alzheimer’s,’ said Clive Downing, 61, whose wife died of Alzheimer’s this year, aged just 59.
Jayne, a support worker, was diagnosed with young-onset Alzheimer’s eight years ago.
Young-onset dementia develops before the age of 65, and more than 70,800 people in the UK are living with the condition.
However, Clive had no idea that’s what his wife was experiencing when she began to lose her memory – forgetting things like appointments — a few months before she was diagnosed.
Clive, who lives in Sheffield and works for the city council, said Jayne was “in denial” that she had the disease, but she eventually lost her mobility, speech and became doubly incontinent, causing her to need 24-hour care.
‘Before her diagnosis, she was a lovely, caring wife, mother and grandmother, but as time went on, bit by bit, Alzheimer’s just eats away at you,’ said Clive.
Although Clive and their two daughters Hannah, 37, a teaching assistant, and Faye, 29, a support worker, worked together to look after Jayne, they could not do it all alone.
They hired help from carers but it was all becoming too much. Caring for Jayne became a two-person job and Faye was undergoing treatment for breast cancer. On August 20, 2022, Faye sadly passed away.
‘It was awful and I just thought, “what’s happening to us? I can’t take it anymore”,’ said Clive.
‘I thought my world had ended; I felt broken.’
About a month later, Jayne was moved into a care home, and then a second one, before she died in June 2023.
Before her death, Jayne ‘didn’t have a clue’ that Faye had died of breast cancer because her Alzheimer’s was ‘so advanced’.
‘She didn’t understand at all, but hopefully, deep down, she did know,’ Clive said.
Clive would visit Jayne daily, sometimes twice a day, and tell her stories and play her favourite music.
‘I used to go and see her every day, and I used to say, “Do you love me?”,’ Clive said.
‘I wouldn’t give up until she said, “yes”, and I got a smile from her; and Hannah and I would hold her hand tightly so she knew we were there.
‘She talked with her eyes, and her eyes lit up when she saw us… I’m glad she’s not suffering anymore.’
Working a full-time job and caring for his late wife was stressful, and Clive took up running, joining a local running club, Steel City Striders.
He said that it was the ‘best decision he ever made,’ adding that running was his ‘saviour’.
Now, he fundraises for Alzheimer’s and hospices in memory of his wife and daughter, raising nearly £30,000 in total.
He believes that there isn’t enough awareness about early-onset dementia and wants to help find a cure because, although ‘it didn’t help Jayne, it might help somebody else in the future’.
‘I just want to get more help for people with young-onset dementia, and more support for families and carers,’ he said.
‘Without Hannah’s help and support, I’d be lost; she’s my go-to, my rock, and she does everything for me.
‘But when you’ve been through what we’ve been through, trust me when I say there is not enough support for people with young-onset Alzheimer’s.’
You can visit Clive’s fundraising page at justgiving.com/fundraising/clive-downing
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