“This shouldn’t be the norm”: financial hardship at the end of life

Kim and George, a couple in their early 60s, are part of this group. They share their heartbreaking story of how unexpectedly taking on caring responsibilities for their parents has caused financial hardship throughout their day-to-day lives.

Kim’s mother died from dementia in February 2024, and just days later, her partner George’s mother, Lydia, was diagnosed with Alzheimer’s. On top of this, George’s father, Ed, lives with Parkinson’s and is also immobile. The combination of diagnoses and varying stages of illness meant that Kim and George suddenly found themselves taking on immense caring responsibilities.  

Whilst the couple have received brilliant support from the Hospice of the Valleys in Ebbw Vale, they’ve faced difficult challenges in getting financial help from the government. 

To allow her to help care for George’s parents, Kim had already reduced her work hours teaching yoga and dance. Then, the pressures of having to work and care for his parents at the same time became overwhelming for George. He was forced to quit his job.  

Kim and George explain that the impact of the stress of the extra caring responsibilities is non-stop. Previously a lover of bike riding, George no longer goes cycling – he is afraid that something will happen to his parents in the time that he is out of the house. And due to the stress of caring, he has also stopped feeling able to exercise; at one point, it got so bad that he couldn’t even take his dogs for a walk – something which he loves to do. 

With George’s income completely stopping, the couple were left facing a difficult financial situation. They were forced to resort to using their long-term savings to live and pay for the extra costs of caring for Lydia and Ed.  

Kim explains that they’d already had to cut their expenses ‘down to the bone’: “It’s really tough – we’ve never felt in a poverty position before but that’s where we now are.” The couple estimates that they are now spending an additional £30-£50 per week on travel and energy expenses, all of which is being paid for from their savings.

Kim adds, “It is still such a shock to us that we are where we are, and I can only wonder how many people there are out there in the same position. We’re using our savings to live, instead of saving for our future. It’s just wrong, and the government needs a huge shake-up. People are accepting this as the norm, but it shouldn’t be.” 

Kim believes that people caring for their loved ones should be paid for their caring roles. Whilst the government does provide a Carer’s Allowance, Kim didn’t meet the eligibility criteria.

She also believes that carers should be provided with significantly more support to help them navigate their situation.  

Finally, Kim conveys the absolute importance of providing mental health support for carers and those encountering financial hardship due to the unforeseen costs of caring. 

Sadly, Kim and George are just two of the people with real-world experiences included in our new report, "It's a nightmare scenario": death, dying and financial hardship.  

The report is based on first-hand research, primarily with carers and bereaved people, who have lived experience of financial hardship at the end of life. It aims to ensure their experiences are heard by decision-makers across the UK.  

Nicola is another person whose real-world experience of financial hardship is included in our report.

In 2022, her husband was cared for by Teesside Hospice for 8 weeks after he became seriously ill. Nicola explains that the period after her husband died was financially very hard – and particularly when the Bereavement Support Payment was stopped completely.  

This ‘abrupt end’ to money the family relied on was difficult – Nicola believes that it could have been made much easier by a more gradual conclusion to the payments. She says people shouldn’t have to suffer simply because they don’t know what is out there to help them. Instead, help should be easier to access, without involving long phone calls and wait times.

Despite the difficult financial challenges, Nicola describes the hospice’s support as ‘fantastic’: “The team couldn’t do enough and went above and beyond in every way. I now volunteer at the Wellbeing Centre at the hospice, where I help with pampering sessions for the ladies. I love it! I also do events and fundraising for the hospice.” 

Thanks to the powerful stories of Kim and George, and Nicola, and many more, who have all experienced financial hardship following the death of a loved one, the report outlines how financial hardship affects experiences of death, dying and bereavement.  

It then sets out a series of recommendations for how governments, health systems and services can make improvements.