Joanne begins by introducing herself, and explaining the current care situation she is in. She cares for her mother, who has dementia and chronic arthritis, her husband, who is recovering from heart surgery and has several other health conditions, her son, who is autistic, and her daughter-in-law, who is a wheelchair user.
Joanne candidly shares the story of how she came to care for four others.
Joanne and her husband adopted their son when he was 12 months old. “We knew there was a possibility that he may have some sort of developmental difficulties”, she explains, “but the signs at the time were that he may not”.
Despite initial uncertainty, her son began showing autistic traits early on. Joanne recounts the challenges they faced with his school, who initially blamed his behaviour on bad parenting. It wasn’t until he was six, and after enduring a long wait for a medical assessment, that he was eventually diagnosed.
Caring for her son was initially made easier as Joanne’s parents would regularly look after him. Both her son and his grandfather, Joanne recalls, were very close. “Rather than being grandson and grandfather, they were besties”.
The additional support also helped to alleviate pressures on Joanne and her husband, both of whom were dealing with their own health issues.
Things became more difficult when Joanne’s father was diagnosed with cancer. Despite treatment, his mobility began to worsen, meaning Joanne and her mother began to adopt caring responsibilities. During this period, Joanne’s mother began to exhibit some signs of memory loss. At that time, Joanne remembers that her son was “brilliant”:
“If mum and dad phoned and said mum can’t get the telly on... he’d drop everything and go to sort her out. He helped my dad out, took him out, everything. It worked out really well.”
Joanne’s father sadly passed away just before lockdown, which came at the “worst possible time”. During this period Joanne’s mother’s health “really started to decline”. Since then, Joanne has relied on carers calling in several times a day, and community alarms – which she says have provided great “peace of mind’.
In recent years, Joanne’s husband’s health has also declined, which culminated in heart surgery just over a year ago. Recovery has been complicated by additional health problems that have not yet been entirely identified.
“I kind of thought that we’d get into our fifties and we’d be flying our kites”, Joanne reflects, “and be able to go off and do all the things in the world we wanted to.”
“But actually, we can’t.”
“It’s gutting when you’ve worked so hard to not actually have that time.”
Care and Health Support Options
“I don’t get anything from the council [to help provide care],” Joanne tells us. Following a caring assessment, the council can provide a one-off ‘respite’ payment, but Joanne points out that these are obsolete if not supplemented by support for those she cares for while she would be away.
“It’s the system that’s at fault”, she continues. “There needs to be something behind [the carer’s assessment], there needs to be a core support offering.”
Joanne suggests that this could materialise in a support group for carers in similar positions, or in arranged respite days for the family that factor in the needs of individuals – a power chair for her daughter in law, for example, or a quiet place for her son. “They need to be giving us more support and access.”
Joanne envisages a “support framework where your social worker has got lots of different things at their fingertips to help you… a better armoury that they can use to support carers.” She acknowledges that there are some available options, but they do not go far enough, or are not suitable, to many carers needs. “[The carer’s allowance] is an absolute pittance, and I can’t claim it because I earn money.” If she did qualify, she continues, “I can’t live on it, and that’s not fair.”
“I think [the government] need to look at the financial side of it, not just for those who aren’t working, but for those who are.” She points out that an additional allowance that accounts or care provision on top of her regular salary could go a long way - “If I had carer’s allowance for example, then I might be able to say actually I’ll have somebody in to do my gardening”, providing small but otherwise elusive respite.
Asked whether she gets any time to herself, Joanne was clear. “No, not at all, no. It’s not right.”
It becomes clear from our conversation that issues extend past the council when it comes to meeting health and wellbeing needs. Given the urgency of healthcare support for several of those she cares for, she says that trying to get GP appointments becomes a real juggling act.
“Picture the scene”, she begins. “My husband needs some medication and needs to see the doctor because of poor health. My son has a rash, that needs to be looked at in case it is something that my daughter-in-law could catch which would mean her ability to walk would severely deteriorate. My mum is exhibiting various symptoms, and I myself need an appointment about my joints.”
“That’s four of us”, she says. “How do I choose who sees the doctor?”
Political Outlook
Approaching politics, Joanne appears to have found hope in the Liberal Democrats. Though in a largely Labour-voting area, she remembers coming across the Liberal Democrat leader, Ed Davey, discussing on television his own care experiences, and she felt somewhat reassured. “Thank the Lord”, she thought, “finally someone who gets it and wants to change it.”
“I think the problem is you get politicians who don’t understand it because they’ve never done it”, she continues. “Until you have lived it and you’ve understood the challenges”, it is difficult for politicians to truly appreciate the issues that face many carers across the country, Joanne argues.
Future Projections
But what might the immediate future look like? “It’s a tough call”, Joanne says.
Her mother hopes to move into a care home soon, “which should relieve things a little”. Joanne accepts that caring for her son will likely be a life-long role. At home, she hopes to be able to convert her garage to provide one-floor living to her daughter-in-law, which will hopefully bring a “little bit more independence”. But with this comes further challenges, particularly in securing external funding for the project. “It’s a continual fight to get the disabled facilities grant”, she says. “I think this is a lot of the problem – the things about caring that people don’t see. It’s not just the caring for people, it’s all the fighting you have to do.”
But Joanne exhibits that same determination that millions of unpaid carers across the country also do. “I’m hoping things might get easier, but it’s very difficult to say. I try not to think about [the future] too much, to be honest. Because otherwise you’d get totally cocooned in it.”