Living with Dementia – a difference in the family?

Relating challenges faced by the care sector to her own family’s experience, Dame Philippa Russell writes a moving and powerful piece about what’s needed in social care reform, and what would have made a difference for her.

The historian Arnold Toynbee once wrote that every generation has its own taboos and overcoming those taboos will be key to better lives for all its citizens. My father, a surgeon, always said that for decades, cancer was our last taboo. In 2021 we can and do discuss cancer.  Now dementia has taken its place as the last taboo, and along with improved life expectancy, we have the challenge of how to pay for the best possible care. Amidst cuts in local authority budgets and post-covid-austerity, we have seen self-funders become the lynchpin of a tired social care system – but all too often experiencing very private challenges and hidden from many of the big debates about social care reform.

I have lived with dementia in my family for 30 years. My mother had vascular dementia (spending her last years in a care home). My sister- in-law has dementia and COPD but lives determinedly at home with live in carers. My husband died a year ago with cancer, heart failure and Lewy Body dementia. His last years were spent in ‘shared care’, at home with the family and carers or in a nursing home depending on his circumstances. In all three case, the choices were personal and real – and of necessity were funded by ourselves.

Our family’s story of living with dementia mirrors that of many other families. For four years, we juggled my mother’s distance caring with home care services and friendly neighbours. But crisis calls from the neighbours, police and GP escalated.  One disastrous weekend, my mother slipped into the kitchen and added six tins of salmon to a pie nicely browning in the oven for supper. The resultant explosion wrecked the house. We knew it could not go on.

We found a good care home to cover the necessary weeks of repairs. I remember crying in the car after introducing my mother to the care home staff and residents who would be her family for the coming weeks. I felt we had failed.

But when I came to collect my mother to go home – to a smart new kitchen and a few adaptations added for accessibility in the future – it was my mother’s turn to cry. ‘I don’t want to go back’ she wept, ‘I like it here, it’s such a lovely hotel’ Talking to the staff, I heard Mozart coming from the sitting room. My mother had been a professional pianist in New Zealand. Now, when she could neither read music nor indeed words very easily, she was playing Mozart by ear to a delighted audience. Finishing and bowing she swept back in. ‘I can’t come with you in the middle of a concert’ she said. We realised that she had made her choice and she was happy. But we had to find a way of paying for her care.

But that happiness had to be paid for. We sold her house, we sold her jewellery, we took out bank loans and asked that dreaded question all self-funders ask eventually – when will the money run out?  My mother died when we had five weeks’ care home fees left.

But my husband’s story is very different. He sadly combined terminal cancer with heart failure and dementia. The NHS was efficient with his cancer and cardiac problems. But his behaviour could veer from happy to angry and aggressive in minutes. My son with a learning disability and the grandchildren were frightened and upset. We were firmly rejected by social services as ineligible for any support from social services and Alan’s behaviours made the hospice a difficult proposition. Carers – all self-funded - came and went because of the anger. Like many others, I learned to appreciate the police and the paramedics who came and listened and averted the crises with a patience and kindness that I will never forget. They were also free!

In the end I sold my house to cover the complex package of care which Alan now needed. It was our family home and we loved it, but it had to go. If I had been expected to pay for Alan’s chemotherapy and cardiac surgery, there would have been national outrage. I would have featured in the BBC News and social media.  But paying £76-80,000 a year for dementia care, possibly for years to come, was somehow our family’s sole responsibility.

One final insult – though I understood it – was being asked to pay nearly 30% more for my mother’s and then my husband’s care as compared to the charges required from the local authority. I knew the care and nursing homes could not have survived without our ‘top-ups’. But the additional costs had a significant impact on family finances and once again I was wondering when the money would run out.

Looking back, I was fortunate. With a disabled son – with brain damage from birth – I was an ‘expert through lived experience’ and I understood how to get the information I needed to buy the best care. In effect I understood the ‘care market’.

Many adults with disabilities or health conditions now have personal budgets and coproduce their own care. But OLDER people are all too often excluded from the system because they have assets over the value of £23,000 and struggle to find as well as fund the support they need. We all too often form a hidden army – the lynchpin of the care system - and we could do so much better if we were recognised and supported.

What would have made a difference to myself and my family?

  1. Having a ‘whole family assessment’ – assessments are not only about money, the Care Act 2014 is clear that they can be seen as an intervention in their own right. With demographic change, care needs in later life are often long-term. We need support in making the right plans, the right choices. As a fellow carer said to me the other day, ‘my Dad’s house is littered with the expensive mistakes we made, because we did not get the help we needed – the wheelchair that is too small, the ramp that is too steep’.
  2. What sort of care are we paying for?’  Other friends have said to me so often that they wished they had known more, postponed the move to a care home for an older relative until later – thinking about other housing with care options such as extra-care housing or supported living.
  3. We need to recognise the interdependence of health and social care. WHY was Continuing Healthcare Funding so difficult to claim – and WHY can we not make use of hospital discharge plans and of course visits to the GP to pass on essential information to self-funders?
  4. And why should dementia be seen as a ‘social need’ rather than the medical condition that it surely is?

In conclusion, good care is a scarce commodity – 112,000 vacancies in the care sector – we need family carers but we also need to treat self-funders fairly

Most importantly, we need to talk honestly and openly about 2lst century care – our own and our family members’ current and future needs and how we will pay for it.  

What would have made a difference?  Firstly, the unfairness of ignoring dementia as a disability, a health condition in its own right – and thereby ensuring early diagnosis and support. Secondly, so many of us have impoverished ourselves, lost our own homes to try and give our relatives the best possible quality of life. We got some modest continuing healthcare funding (but it could only be used on his periods of time in the nursing home and was for cancer care not dementia support). The cost of care escalated as the behaviour challenges grew.  

A diagnosis of dementia should not be seen as the end of a life but rather a journey with opportunities and support to meet the challenges. So, how do we take this debate forward?  As Social Care Future recognises, we need a different social care system. Making it Real broke new ground in raising the art of genuine conversation as a better way of assessing someone’s need for support than the usual formulaic processes. But if we are to get the social care reform we want, we also need the bigger conversations and debate across all our communities. The Germans used a ‘Big Conversation’ to engage their whole population in addressing the challenges of social care and support (including the reciprocal responsibilities of individuals and the state).

Soon, the Health and Care Bill will sweep through Parliament – maybe as promised something on social care is coming. In thinking about dementia, we are thinking about all our lives – in effect we need a new narrative on ageing well (it is about all our futures!). And a final thought – we have an NHS Long Term Plan, setting out ambitions and timescales, recognising that reform takes time to do well.  TLAP’s work in sharing the voices of people who draw on care and support should surely be heard in the work being done on social care reform.


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