Selfless son who gave up work to look after his mum with dementia opens up about the struggles of being a carer.

A devoted son whose parents were diagnosed with dementia eight years apart has opened up about the struggles of caring for them in support of Carers Week 2022 and Alzheimer’s Society’s Forget Me Not Appeal.

Tony Davidson Cowen’s life was turned upside down when his dad Cedric was diagnosed with dementia in 2011, but little did he know that his mum would later go on to face the same cruel condition.

Tony (61) and his partner Gary (38) had been living in Manchester for 16 years but moved back to Tony’s childhood home in the village of Melling in April 2016 to care for his dad who had vascular dementia.

Tony’s mum Maureen had been caring for him at home, but after he suffered a bad fall she was informed he would need round the clock support and Cedric was later moved to end of life care.

“Gary and I packed up our busy lives in Manchester and moved back to my childhood home to start caring for Dad,” recalled Tony. “It was a big move but we knew it was the right thing to do. Gary sacrificed the most and gave up his job to care full time for Dad while I continued working as an engineer. Gary was brilliant with Dad – bathing and feeding him – and they formed a really close relationship.”

Tony’s shift pattern at work meant that he worked four days on and four days off, so in his free time he would take over caring for Cedric.

“We were very proud to have been able to keep Dad at home until his very last days as that’s what he’d always wanted,” Tony said.

Sadly, Cedric passed away in October 2018 aged 91, which was a devastating blow for Tony. But it was followed by more tragic news when his mum Maureen was diagnosed with Alzheimer’s just three months later.

Tony said: “She started getting a bit confused about Dad dying and that’s when we knew something wasn’t right. Mum was put on medication and she didn’t require the same round the clock care that my dad did. For a short time, it felt as though Mum had gotten lucky.”

But unfortunately Maureen’s Alzheimer’s deteriorated over a short period of time and she began to decline rapidly.

“One day Gary was out dog walking and drove by the house to see Mum standing in the middle of the road. She didn’t have any recollection of it when we asked her,” said Tony. “Things started to take a noticeable turn for the worse and there was a lot of back and forth with doctors about how her condition was progressing.”
In June 2021, Tony made the decision to give up his job and become Maureen’s full-time carer.

He said: “There are good days and there are bad days. As time goes on, and Mum’s memory gets worse, I have to keep reminding myself of what she is going through and how she must feel. Sometimes it’s hard not to get frustrated and say ‘Why can’t you do this?’ or ‘Why are you acting like this?’ Sometimes it helps to step back from the situation, take a breath and look at the bigger picture.”

Living with dementia and its effects can often be isolating and many people report that they feel forgotten about, but it’s not just those diagnosed with dementia that can feel invisible, but their carers too. In fact, a survey conducted by Alzheimer’s Society in 2021 found that 33% of carers didn’t feel they had the support they needed in order to care for a loved one living with dementia.

Thankfully, there are a range of people and organisations you can turn to for face-to-face or online support. These include: GPs, staff at memory clinics and other health professionals, local social services departments and support groups run by local charities. Talking therapies like Cognitive Behavioural Therapy (CBT) and online discussion forums can also help. Talking Point is Alzheimer’s Society’s online community where you can ask questions, share experiences and get information and practical tips on living with dementia from people who are going through or have had similar experiences.

Helen Payton, Dementia Adviser at Alzheimer’s Society said: “Everyone will experience caring in their own way. There may be days when you feel you can cope well and other days when you feel that you can’t. There may be some parts of caring that you can find easy to manage but others that you find difficult. It’s important you don’t disregard your own health and wellbeing – processing your feelings, being kind to yourself, talking to others and taking regular breaks are just some of the ways you can ensure you are looking after yourself too.”

Maureen has told Tony that once her Alzheimer’s progresses and she can no longer wash or dress herself, she wants to live in a care home. Until that day though, Tony will continue to care for her as he has so selflessly done for the past three years.

“That’s the thing with dementia, said Tony. “It doesn’t have a timetable and everyone’s situation is different.

“To the countless carers who are going through something similar to myself I say: ‘Take time for yourself and look after your own health and wellbeing.’”

Alzheimer’s Society’s Dementia Advisers connect people to the support they need, whether it’s advice on legal documents, help understanding dementia, or someone to talk to when things get tough. Visit alzheimers.org.uk or call 0333 150 3456.

Support people affected by dementia by wearing your Forget Me Not badge and help to fund life-changing dementia support by Alzheimer’s Society. Visit alzheimers.org.uk/forgetmenot for more information.