Terry Mahoney, a 94-year-old retired engineer, faces the daunting task of covering nearly $10,000 a month for his wife Barbara's nursing home care, following the denial of NHS Continuing Healthcare (CHC) funding. The couple, married for over 70 years, have been separated since Barbara, 92, moved into a care facility due to her advanced Alzheimer's disease.
Barbara was diagnosed with Alzheimer's in 2015. Initially, her symptoms were mild, but her condition has since deteriorated to the point where she is non-verbal, requires round-the-clock care, and experiences episodes of distress and aggression. For ten years, Terry cared for Barbara at their St. Albans home, with their daughter Tracey Hart, 60, assisting. However, Barbara's needs became too complex for home care, leading to her move into a nursing home earlier this year.
Tracey Hart applied for CHC funding, a program designed to cover the care costs for adults with complex health needs, believing her mother's severe condition warranted it. The assessment process involved social workers and NHS staff reviewing Barbara's case, but according to Tracey, they did not directly assess her. Instead, they reportedly watched footage of her daily activities on an iPad.
Despite Tracey's arguments that Barbara's needs were severe and unpredictable due to the degenerative nature of Alzheimer's, the CHC application was denied. The assessors reportedly deemed her risk of health complications low, citing the absence of a catheter or recurring urinary tract infections, a justification that troubled Tracey. "She can't express pain. How do you know she's not getting UTIs?" Tracey questioned.
With CHC funding denied, Terry is now responsible for the substantial monthly fees. Tracey described her father's distress over the financial burden, noting his worry about how he will afford the care each month and his contemplation of selling assets like premium bonds to cover the costs. She expressed frustration that her parents, who have contributed to the tax system throughout their lives, are now facing such significant expenses without adequate support.
While Barbara was denied CHC, she was awarded NHS-funded Nursing Care (FNC), which amounts to approximately $330 per week. However, this contribution is insufficient to cover the overall cost of her care, leaving a significant shortfall for the family to manage.
Tracey also spoke of the emotional toll the situation has taken on both her parents. She feels the system has dehumanized her mother and that her father, who spent decades caring for Barbara, has been left without adequate support or education on managing the challenges of dementia care. She emphasized that her parents were otherwise healthy, making the impact of the disease particularly frustrating.
This is Money has contacted NHS England for comment on the case. For confidential advice regarding dementia, the Alzheimer's Society's Dementia Support Line can be reached at 0333 150 3456.