During the day, Vic Lyons works full-time in dementia care as a senior Admiral Nurse. Her job is to help families navigate the emotional and bureaucratic minefield of a disease that robs their loved ones of their independence, memories and cognitive functions. 

Although Vic would naturally display kindness and a sympathetic ear when listening to what people are going through, it is all the more poignant for her.

When she logs off to the day, Vic heads back to her home in Hertfordshire, where she and her husband, Andrew, 53, care for Andrew’s 89-year-old mother Margaret, who was diagnosed with dementia in January 2024. All while also raising their two sons, aged 15 and 12.  

‘At work, I support families going through dementia and, at home, I’m in the thick of it,’  Vic, 51, tells Metro. ‘Mornings are consumed with getting Margaret dressed and the boys to school, while evenings are spent coaxing her through confusion and helping my sons with homework. Then the weekends are swallowed by housework, bills and medication reviews.’

There is thought to be up to 2.4million ‘sandwich’ carers in the UK – people stuck between looking after their children and elderly relatives – something the nurse admits is ‘a tough gig’.

‘The demands are exhausting,’ she admits. ‘It feels like Groundhog Day and there’s no respite. When you’re caring for someone you love, there’s no off switch. Both Andrew and I work full time, so every day demands careful planning.

‘Andrew gets his mum dressed and drops her off at the local day centre each morning, while I put her to bed in the evening. Her dementia is advanced, and her memory span is sometimes just seconds.’

Vic explains that Margaret can no longer make herself a drink, and often forgets who the family are. ‘She gets anxious when she’s by herself. It takes all of us, including the boys, to care for her,’ she says.

‘I know how hard it is for families because of my job – and yet the reality is so much harder than I ever thought it would be.’

In 2021, Vic’s mother-in-law moved from London to a flat close to the family home, a move planned to preserve her independence for as long as possible.

‘She’d stopped cooking dinners, taking her pills properly and going to the supermarket,’ remembers Vic. ‘We didn’t have an official diagnosis but, because of my job, I knew where this was headed. We discussed what care Margaret would need and moved her in around the corner because she still wanted her autonomy. We installed cameras and zone alerts for peace of mind – and count ourselves lucky that she sleeps through the night.’  

However, Vic recognises that her mother-in-law will soon need around-the-clock care. ‘Her condition is fast deteriorating,’ she adds sadly. 

‘We’ve pressed the button on building an extension to our house next year. Margaret oscillates between not wanting to be a burden and not wanting to be alone. But for her welfare, we see no other choice than for her to move in with us.’  

Thankfully, Margaret has enough money saved to fund the day centre costs where she receives specialist dementia support and companionship during the week while Vic and Andrew are at work. Still, the couple will need to remortgage their house to pay for the extension.

While the family have had to confront the costs of later-life care, a new poll has revealed just how much Britain is burying its head in the sand when it comes to ageing, care needs and the price tags attached.

A national survey of UK adults aged 45-+ reveals that two-thirds (62%) have never discussed later-life care with a parent or partner, while only 6% have a clear plan for how they or their parents will be supported as they age.

In fact, an astonishing 94% of people don’t talk about these things until forced to by circumstance. It was only when Margaret began to display worrying symptoms that it prompted conversations about care, highlighting how even the most informed families often delay planning until they are forced to act. 

The research, commissioned by Age Space, the UK’s leading online hub for families supporting elderly relatives, paints a picture of widespread confusion, financial uncertainty and what campaigners are calling a ‘dangerous national silence’. 

Vic explains that she also worries about the emotional impact the situation is having on their family – especially their two boys. 

‘When Margaret’s distressed, they can feel a bit scared and unsure how to react,’ she explains. ‘She sometimes thinks Andrew is her husband and I’m the other woman – it’s hard for the boys to hear this. I want them to feel they can invite friends around and be normal noisy teenagers.

‘I feel constantly torn. If the boys come home and want to talk but Andrew’s mum is becoming distressed or needs something, I have to prioritise her.

‘On special occasions such as Christmas Day, I worry she’ll get upset and I don’t want the boys to carry that memory. I also feel sad that they probably won’t sit and watch a movie with us – there’s an emotional barrier there now because of Nan.’  

The personal toll of being a sandwich carer, is also something that resonates with Vic. ‘You’re caring for everyone except yourself,’ she admits. ‘We get an hour watching TV at night if we’re lucky. I haven’t been to the gym in a year, and holidays look impossible for us now.

‘Last year, we went to Portugal while Margaret stayed with her sister, but a UTI led to delirium and she was admitted to hospital. We spent our holiday speaking to doctors and worried sick about her.’

For Vic, the silence around care in the UK is rooted in fear, rather than avoidance.

‘People don’t know where to start. The topic is wrapped up in fear – fear of cost, fear of losing independence, fear of aging. It isn’t easy,’ she says. 

‘People imagine caring is popping in to make a cup of tea. But it’s navigating memory loss, safety worries, emotional distress and guilt. And most people have no idea how much support they will need until they’re already drowning.’

To tackle Britain’s care silence, Age Space has launched the Prepare to Care campaign, fronted by broadcaster Janet Ellis. The campaign urges families to have earlier conversations about care, ideally years before decisions are forced on them by crisis. For more information, click here.

MORE: Why one couple moved out of their 3-bed house to live at the bottom of the garden

MORE: I couldn’t even run 5km – then I did 100 marathons in 100 days across India

MORE: Tesco, Sainsbury’s, Asda, and Aldi considering new £2 per week ‘boost’ for shoppers

Comments


Add as preferred source