Husband, 94, forced to pay £8,000 a month for his wife's Alzheimer's nursing care - after NHS funding was denied despite her 'severe' needs

Terry Mahoney has worked as an engineer all his life to support his family. But at 94 years old he's counting his pennies, worrying about how he'll find nearly £8,000 next month.This unimaginable cost isn't to pay his mortgage or his bills. It's to fund nursing care for his wife Barbara, 92, who has advanced Alzheimer's disease.Terry and Barbara's daughter Tracey Hart, 60, has watched her mother's condition decline since she was diagnosed in 2015. Now she's helping her father, who has health problems of his own, devise a financial plan for the next year so he can pay for the nursing home.Speaking to This is Money in support of the Defeating Dementia campaign, in association with Alzheimer's Society, Tracey says her father 'can't fathom' the cost he's paying for his wife's care. All the while, he's missing her dearly after caring for her himself for 10 years in their St Albans home.'He's had his home for over 50 years. It's everything. He doesn't want to sell it. Could he downsize? Yeah, he could. But that's his whole world in that house,' she explains.She has attempted to apply for NHS Continuing Healthcare (CHC) funding, which would pay for her mother's care - however her application was denied, meaning Terry has to foot the full, extortionate bill.Though she is now now non-verbal, distressed and needing round-the-clock care, Barbara's initial symptoms in 2015, when she was in her early 80s, were very mild - so much so that Tracey couldn't make sense of the decline she would eventually see in her mother. For decades Barbara would invite friends and family into her home where she'd greet them with a cup of tea. But suddenly, she found herself having to check how her guests took their drink - something which raised alarm bells for her family.'Why would you ask that? You've made them a cup of tea for 50 years,' Tracey says.Barbara herself was well aware of what her faltering memory meant. She had watched her own sister succumb to the cruelty of dementia - and felt anger and frustration that she too was presenting early symptoms. Terry and Barbara Mahoney, married for more than 70 years, are now living apart after Barbara moved into a nursing home. Terry, 94, must foot the bill of £8,000 per month for her careEveryone experiences dementia differently. Use this checklist to help you make a note of your symptoms before you talk to your GP.'She knew she was forgetting things,' Tracey says. 'It was frustration, a feeling of "I don't want that to happen to me".' When Barbara first began to present symptoms, Tracey's aunt was at an advanced stage. She eventually passed away in 2018.So when a memory clinic assessment confirmed the diagnosis was Alzheimer's disease, the family knew what awaited Barbara - despite receiving little help or information from doctors.'She had a brain scan and they said [mum] had Alzheimer's and quite honestly we never heard another thing,' Tracey recalls.But, born into a stoic generation, Barbara and Terry vowed to live with Alzheimer's and cope as best they could at home. And for a decade, they did.'They just got on,' Tracey says. 'But when you're living with it day-to-day, you just don't see the decline so much. And things change, and it became really difficult.'[Dad] would take over the cooking and I would clean the house. Life just carries on. But because he was there all the time, he couldn't see what was wrong in terms of how things were declining.'As Barbara's needs became more acute, Tracey employed a carer to come in for visits and help with cooking and bathing Barbara. But in Terry's eyes, the help of a carer felt like admitting 'weakness'. 'It was never going to work because my dad couldn't give in,' she says, explaining that if the carer was scheduled to visit, Terry would defiantly make sure he'd done everything that needed doing around the house 'to prove he could'. Meanwhile Barbara's condition was steadily worsening, and she left the house every day to go for walks - often looking to find her mother and sister.At first, Terry tried to stop his wife from wandering off but she overpowered him.Tracey recalls: 'She still had physical strength and she broke the back gate. She would smash things against the back door. In the end, after hours of this, my dad just opened the door.' Barbara and Terry lived together in their St Albans home for decades - and for the last 10 years since her Alzheimer's diagnosis, she remained at home where Terry cared for herThankfully, people in the neighbourhood knew Barbara and walked her home if she appeared lost. But such occasions became more and more frequent.'She's also partially sighted,' Tracey explains. 'So there was a fear of cars, and the speed of the roads today...' Tracey felt it was 'becoming wrong' that her father was still caring for her mother at home when her condition was obviously progressing. 'You can't live like this,' she recalls telling Terry - but still he insisted he could cope.By now Barbara was virtually non-verbal, saying only the word 'no' repeatedly throughout the day - which Tracey describes as 'mental torture' for her father.Tracey knew it had become untenable for Barbara to be cared for at home - but her mother's previous words were ringing in her ears: 'Don't you dare put me in a home, I'll come back to haunt you.'Another concern was how to fund Barbara's care. She would need to live in a nursing home as her needs were so acute, and with the average nursing home in the UK costing more than £1,500 a week (according to 2026 figures from carehome.co.uk), the costs felt insurmountable.Nonetheless, Barbara's condition became so severe that earlier this year, Terry realised he had no choice but to move his wife into a home.While her elderly father worried about how he would afford to pay for care, Tracey explored NHS continuing healthcare funding (CHC). This is a fully-funded care programme for adults with complex health needs and can be delivered to people living at home or in care homes.CHC is not automatically granted if a person has a condition such as dementia; rather it's judged on the severity of their condition and how much care they need.To Tracey it seemed obvious that her mother would qualify for CHC. Barbara regularly lashed out at people around her, had become incontinent and was unable to communicate her needs. Barbara and Terry's daughter Tracey, 60, attempted to apply for CHC funding to fund her mother's nursing care, which costs £8,000 per month A month after Barbara moved into the nursing home, an initial CHC visit was arranged. Officials then confirmed Barbara would be referred to the Decision Support Tool (DST) assessment, at which a social worker and an NHS worker looked at Barbara's case.'They didn't even see mum,' Tracey says. 'They came to the home but they didn't even see her.'She explained how, instead of seeing Barbara in person, the assessors watched footage of her day-to-day activity on an iPad.The person being assessed is scored as low, medium, high or severe in terms of their care needs. 'They'll say to you, 'what do you think her score is?' and I look at it and I think she's severe,' she explains.Tracey uses the example of her mother's incontinence; Barbara can no longer determine when she needs to go to the toilet, and when she is changed by staff, she lashes out.But after explaining this to the staff, they insisted Barbara's risk remained low because she does not have a catheter and she doesn't have recurring UTIs.'She can't express pain. How do you know she's not getting UTIs?' Tracey asks. 'How do you know she hasn't got problems?' Despite the emotional turmoil of choosing to move her mother into a nursing home, Tracey insists it was the right decision and she's happy with the facility she has chosen. But she argues: '[Mum] is there because it's a complex need that she has.' Tracey tried to argue that, due to the nature of her mother's condition, the severity of her needs changes unpredictably based on a variety of factors. 'You've got to take it all into consideration,' she says. 'One day she's in another room trying to smash the window of someone who's bedridden. The next minute she'll sit down and listen to some music.'They cannot find a trigger or a pattern of behaviour because of this degenerative disease. And that's why I'm saying the complexity of it means she needs nursing care. If she just needed someone to come and wash her, she'd be at home.'Ultimately, Tracey's application for her mother to receive CHC was declined, meaning Terry, at 94, is now responsible for paying approximately £8,000 per month for Barbara's nursing care.'He's spending all this money and it's killing him,' Tracey says. 'He's saved his money for decades and hoped it would help him.' Barbara is now 92 years old and at the advanced stage of Alzheimer's disease. She is incontinent, non-verbal and often lashes out at staff in her nursing homeEach month, Tracey explains, Terry worries about how he will fund the next month of Barbara's care. 'He asks, 'shall I sell my premium bonds this month? What shall I do next month?' It has absolutely taken over his life.' Tracey describes her frustration that her parents, who worked for years and did things by the book, are now being penalised when it comes to paying for care. 'At 92, [Mum has] paid all her bloody taxes. Actually [my parents] do deserve some help. They've never taken a penny out of the social system ever. And they're still being looked at as though they don't need help.'Although Barbara was denied CHC funding, she was awarded NHS-funded Nursing Care (FNC) following her assessment.However, paid at a flat rate which amounts to £267.68 a week and is given straight to the home, this money provided little respite for Tracey's family, who still face enormous costs every month.Aside from the money struggles, Tracey feels the system has 'dehumanised' her once vibrant, stoic and caring mother.'I feel like we've imprisoned her. She's having this terrible experience in there really. You wouldn't want to put someone through that. And yet, [Dad] is paying them to do it to her. And he can't fathom it.'She is also deeply concerned for her father's wellbeing after Barbara moved into the home. She describes his state as a type of 'grieving' at not having her around, despite obviously struggling to cope as her needs became more acute.'I think my dad needed educating as the carer,' she says, adding she wishes the memory clinic had followed up with resources after Barbara's diagnosis.'My dad should have been educated to understand that ultimately he needed this network. He needed the help, and having a carer would help him. He's had no support whatsoever.'During over 70 years of marriage, Tracey says her parents had a 'great life and great health.'I think that's what's so frustrating about this disease. Nothing else has stopped working, for both of them. They're both healthy people apart from this brain disease. Otherwise, [mum] would still be at home now.' This is Money has contacted NHS England for comment. For confidential advice, call Alzheimer's Society's Dementia Support Line on 0333 150 3456 Alzheimer's Society's symptoms checker can help spot the signs of dementia READ MORE: How to spot if someone you love has warning signs of dementia