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

Kirsty’s 11-Year Struggle

My husband finally got full time – Kirsty Parsons noticed something was wrong when she observed her husband Jim’s movements in an airport car park. “He was just taking his time, hands in pockets, like it was gloriously sunny. No arm swing. The Parkinson’s walk,” she recalls. At 44, Jim was diagnosed with Parkinson’s disease, a condition that gradually robs the brain of its ability to control movement. Kirsty, then 46, became his unpaid carer, a role she held for the next 11 years. For her, it was a continuous battle to secure additional support as his health deteriorated.

Jim’s decline was relentless. He developed complications alongside his initial diagnosis, but their bond endured. “We could still find things to laugh about,” Kirsty says. Jim, for instance, thought he could take up carpentry, though his efforts often ended in a “great line in sawdust.” Their life together shifted as his condition worsened. To care for him, Kirsty abandoned her paid job as a carer, leaving the couple with a single income. “We went from two full-time incomes to nothing. I couldn’t leave him,” she explains.

Jim’s health deteriorated to the point where he required constant attention. Days turned into nights of care, with Kirsty often waking to tend to his needs. “He was screaming in pain, unable to walk, and at times couldn’t breathe properly,” she says. The strain of his illness was compounded by his reliance on medication around the clock, which led to hallucinations and episodes where he set things ablaze. His violent outbursts left him both confused and frightened, requiring Kirsty to act as a protector. “I had to become the parent to him and not the partner,” she reflects.

The Growing Demand for Social Care

According to BBC analysis of government data, adult social care accounted for roughly 40% of net service spend by English councils in 2024-25. Yet, despite this increase, 372,000 adults in England were still waiting for care by March 31, 2025. That number had fallen from a post-pandemic peak of 542,002 in April 2022, but the Association of Directors of Adult Social Services (ADASS) warns that the drop may not signal full resolution. Jess McGregor, ADASS president, notes that “the decrease shows progress, but we should be cautious about whether that means everyone is getting the care they need.”

McGregor highlights concerns about individuals who may not recognize the importance of social care or hesitate to seek help. “There are people who don’t see the support they require as social care, or who are reluctant to ask for assistance for various reasons,” she says. Additionally, she points out that “councils have raised their thresholds for eligibility, which means some people are still being overlooked.” This raises questions about the accessibility of care for all those in need.

Accessing Support: A Delicate Process

When Jim’s condition worsened, Kirsty applied repeatedly to Trafford Council in Greater Manchester for social care support. Each time, she estimates, the process took between five to six months. Initially, Jim received 12 hours of assistance per week, then 16 hours, and eventually more. The breakthrough came in December 2025, after nearly a year of advocacy. He was finally granted full-time care, but the relief was short-lived. A week later, he passed away, just before Christmas.

Despite the council’s acknowledgment of delays, Kirsty feels Trafford made the process challenging. However, she credits the local Parkinson’s nurse for being instrumental in pushing for Jim’s care. “Am I lucky that I was young when all this happened?” she asks. “Not at all, but yes, because I had more energy to fight.” This sentiment underscores the personal toll of navigating a system that often feels slow and unforgiving.

When contacted, a Trafford Council spokesperson confirmed they could not comment on individual cases but emphasized their commitment to high-quality adult social care. They highlighted a “robust triage” system to expedite referrals, with safeguarding as the primary focus. “Like councils across the country, Trafford is supporting an increasing number of residents who need adult social care,” they added. Yet, for Kirsty, the experience revealed gaps in how care is prioritized and delivered.

Broader Implications for the System

McGregor’s remarks underscore a critical issue in the social care landscape: while funding for adult services is rising, it is not keeping pace with demand. “The proportion of local government funding that’s going into social care is increasing, but from a pot that’s not growing proportionally with the need,” she explains. This creates a scenario where resources are stretched thin, and those who qualify for support may still face long waits.

Kirsty’s story is emblematic of the challenges faced by many caregivers. The emotional and physical strain of providing care without adequate help is a common experience. “It’s not just about the hours spent looking after him, but the constant worry that his needs might not be met,” she says. Her experience highlights the human side of a system that is often measured in percentages and budgets.

The statistics reveal a broader trend: councils like Trafford are allocating a higher proportion of their budgets to social care than the national average. Trafford’s 45% net service spend on adult care was among the highest in England, with only 24 other councils matching or exceeding this figure. Yet, for Kirsty, the numbers did not translate to timely support. Her husband’s journey from diagnosis to death illustrates how critical access to care can be for individuals and families, even in areas with seemingly robust funding.

As Jim’s condition advanced, Kirsty’s role evolved. The once vibrant couple became a household of dependency, with Jim’s needs growing daily. “He was on medication 24 hours a day, and his behavior changed drastically,” she says. The care system, while improving in some areas, still struggles to keep up with the demands of families like hers. Kirsty’s determination to advocate for her husband’s care serves as a testament to the resilience of caregivers, even when the system seems resistant to change.