My husband finally got full-time care – he died a week later

The Struggle for Support

My husband finally got full time – Kirsty Parsons noticed something was off when she observed her husband Jim’s gait in an airport parking lot. “It was a horrendous day, windy, horrible. He was just taking his time, hands in pockets, like it was gloriously sunny. No arm swing. The Parkinson’s walk,” she recalls. Jim, 44 at the time, had been diagnosed with Parkinson’s disease, a degenerative brain condition without a known cure. Kirsty, then 46, took on the role of unpaid carer, a responsibility that would stretch over 11 years. For her, the journey was marked by persistent efforts to secure additional assistance as Jim’s health declined.

Jim’s death in December 2025 came just a week after he received full-time care, a milestone Kirsty had fought for tirelessly. The statistics surrounding adult social care in England, however, reveal a broader challenge. According to BBC analysis of government data, social care accounted for roughly 40% of net service spend by local councils in 2024-25. Yet, the Association of Directors of Adult Social Services (ADASS) estimates that 372,000 adults in the country were still waiting to access care by 31 March 2025. This number has dropped from the post-Covid peak of 542,002 as of 30 April 2022, but the decline does not signal a complete solution.

Systemic Pressures and Personal Battles

Jess McGregor, ADASS president, emphasizes that while the decrease in waiting lists shows progress, “we should be cautious about whether that means everyone is getting the care they need.” She highlights concerns about individuals who might not recognize the need for social care or hesitate to seek help due to cultural, emotional, or logistical reasons. Additionally, she notes that councils have raised their eligibility thresholds, leaving some people underserved. “There are people who don’t realise the help they need is called social care, or who don’t want to ask for help for various reasons, or who are not being helped because our thresholds have gotten higher,” McGregor explains.

Adult social care in England is managed by a range of local authorities, including unitary authorities, metropolitan district councils, county councils, and London boroughs. Kirsty’s council, Trafford in Greater Manchester, allocated 45% of its net service spend to adult social care in 2024-25, surpassing the national average of 41%. Only 24 other councils had a similar or higher proportion of funding dedicated to this sector. Despite this, the BBC’s analysis excludes spending on education, which is ring-fenced, leaving the full picture of resource allocation incomplete.

A Life Transformed

For Kirsty, the path to social care support was anything but straightforward. She recalls Jim’s words on the day of his diagnosis: “I want you to tell our story.” Over time, Jim’s condition worsened, and he developed other complications. Though he retained a sense of humor, he joked about his own limitations, such as his attempts at carpentry that often resulted in “a great line in sawdust.” Their relationship shifted dramatically; Kirsty left her paid job as a carer to dedicate herself entirely to his care, transforming their household from two stable incomes to a single, stretched resource.

Kirsty’s days became a cycle of vigilance. Jim’s declining health meant she was often up all night, managing pain, hallucinations, and episodes where he could no longer walk or even breathe properly. He relied on 24-hour medication, yet the constant demands of care left her feeling overwhelmed. “I had to become the parent to him and not the partner,” she reflects, capturing the emotional toll of the role.

The fight for support began when Kirsty applied for social care assistance multiple times through Trafford Council. Each time, she estimates, she waited five to six months to receive increased aid. Initially, Jim had 12 hours of paid carer support, then 16, and eventually, full-time care. It took around a year of persistent advocacy before the support was granted. Jim’s passing just before Christmas 2025, a week after receiving care, underscores the precarious nature of the system.

Lessons from the System

Kirsty acknowledges that Trafford Council made the process difficult, yet she credits the local Parkinson’s nurse for playing a crucial role in helping her push for Jim’s care. “Am I lucky that I was young when all this happened?” she questions. “Not at all, but yes, because I’ve had more energy to fight,” she adds, highlighting the personal sacrifices required to navigate the system.

A council spokesperson states that they cannot comment on individual cases but remain committed to delivering high-quality social care. They mention efforts to improve access and timeliness, including a “robust triage” process that prioritizes safeguarding. “Like councils across the country, Trafford is supporting an increasing number of residents who need adult social care,” the spokesperson notes. However, this statement does not address the underlying issue of funding strain.

McGregor expands on the financial challenges, explaining that while the proportion of local government funding allocated to social care is growing, “that is from a pot of funding that’s not growing proportionately with the demand for social care.” This discrepancy has created a situation where even those who qualify for support may face delays or insufficient resources. Kirsty, now 56, represents the countless families caught in this system, where personal determination often determines the outcome of care access.

The story of Kirsty and Jim is not unique. It reflects a national trend of increasing pressure on social care services, exacerbated by an aging population and a post-pandemic surge in demand. As the system continues to evolve, the need for systemic reform becomes ever more urgent. For families like Kirsty’s, the struggle to secure care is a daily battle, one that can end tragically when support arrives too late.