“You do it because you love them” Julia’s story for Carers Week 2023
Julia describes her mum Sheila as a “social bunny”. In her younger years Sheila was a pianist and singer on the stage, and in later life before retirement, a careers officer speaking to students in assemblies to give advice, encouragement and guidance for the future.
Now aged 86, Sheila still enjoys a chat, a laugh and a giggle, but her memory is not the same. Sheila is living with dementia, and is unable to remember other family members, which means that she relies on Julia as a daily reference point.
For Julia, 60, caring for her mum is 24/7. She is there to help with everyday tasks such as dressing, washing and eating, as well as keeping things clean and tidy and sorting medication.
Three years ago, Julia’s dad Leslie fell ill and, later, sadly passed away. Now, Sheila lives with Julia in the family home in Swindon.
“She’s a lovely lady,” said Julia. “She’s always been there for me and that’s why I do it. I make sure she eats, make sure she drinks, I do everything for her.
“We’ve got into a routine, but it’s very hard work, I’m not going to deny it. She misses me when I’m gone, she wants to know where I’ve gone all the time.
“Physically and mentally, it’s challenging because you have lost your life. When I took on my parents, it was them or my job. I thought “my parents have got to come first” so I gave up my job.
“I just can’t do anything for myself. You know if you get up in the morning and want to go out you can’t, because she doesn’t go out – she doesn’t travel well. There is no life for me at this time, I am looking after her all the time.”
Registering with Swindon Carers Centre has offered some comfort to Julia. It makes a difference to be able to seek advice via the charity’s Carers Support Line and to speak with the Adult Carer Support Team when there are questions over Sheila’s health.
“It’s a big responsibility as a carer to know that you’re doing the right thing. I have to make sure she takes her medication and that’s probably my biggest fear because there are so many pills.
“When mum’s feeling unwell, I think ‘what do I do? Do I take her to the doctors?’ I contact Swindon Carers Centre and they reply straight away, I get the answer I need. I’m glad they’re there. I don’t know how I’d cope without that, because you do need to have someone to talk to.”
Swindon Carers Centre also successfully applied to Swindon Borough Council for Carers Relief for Julia, which pays for a professional carer to come and look after Sheila for four hours a week.
“For me it has been fantastic, just to get out and have a bit of sanity. I look forward to those four hours to get out of the house, but it’s not long enough,” said Julia.
“All these things that go into your role as a carer they mount up. I feel like I’m building a mountain out of marbles. I’m putting another marble on top, and I’m waiting for the day when that mountain is going to explode. That’s how it feels, you don’t know what’s going to push you over the edge.”
For other members of the household, caring for Sheila can also be stressful and emotional – it is something which affects everyone, and they have become carers too.
“When she’s with me, she’s so warm and lovely,” says Kayleigh, who is Sheila’s granddaughter. “Then she switches, she’s upset, confused and lost. You see the worry in her eyes and think ‘What can I say?’ It makes me feel sad that my nan has gone in that moment, that I get an hour at most of her being her.”
Data from the 2021 Census shows that the proportion of unpaid carers providing 20 hours’ care a week or more, nationally and locally in Swindon, has increased noticeably.
In 2021, just under 1 in 50 people (1.8%) reported providing between 20 and 49 hours of unpaid care each week, compared with 1.4% in 2011.
The proportion of Swindon residents providing at least 50 hours of weekly unpaid care increased from 2.5% to 2.6%. The care Julia provides for Sheila is an illustration of just how intense these caring roles, requiring many hours of time per day, can be.
For Carers Week, Swindon Carers Centre – alongside network partner the Carers Trust – is following the theme “Recognising and Supporting Carers in the Community” by sharing experiences like Julia’s to ensure that there is greater awareness and appreciation of the vital work unpaid carers do.
“My mum often wonders what she’s done to be this person,” says Julia. “She asks me ‘Why can’t I remember? Why am I confused?’ That’s the hardest thing knowing what to answer. It’s horrible for her and it’s horrible for us because she’s not the person she was.
“24/7 is… how can you explain it? You don’t relax, there is no on/off switch, it’s all the time. You do it because you love them, you wouldn’t do it otherwise. My mum was there for me all through my childhood and now it’s her turn to be looked after.
“You don’t do it because you want people to think you’re amazing, you’re just doing what you feel is right. But I do worry that people don’t understand it, or they don’t care – because it’s not something that they have experienced or would even consider doing.”