I’ve recently had some thought-provoking conversations with several interesting people. As a result, I find myself sat in front of my keyboard, mulling on ‘when I get old’ and crafting this blog.
One conversation was with an older relative, nearing end of life with cancer and determinedly making plans to stay in her own bed, chair, routines…home. Another with Gary from Gobby, reflecting on people’s early submissions to our ‘when I get old’ survey. Someone used the survey to share distress that their Dad had been diminished by the care system – that everything he was had been removed slither by slither by professionals and ‘care providers’. Then I heard about the commercial challenges faced by care home organisations and how these drive scale – larger and larger buildings and numbers of residents. Finally, a chat with friends in their 50s and 60s all with lifelong careers in social care and all determined to avoid care services as they age!
Does it only have to be the way it is?
The cost of care for self-funders is eye-watering. Someone told me a few months ago that the new care home at the end of my street charges £1800 a week. I had a google and saw from the CQC report that they have ‘115 beds’. Another friend told me an acquaintance of hers her recently moved to a care home that cost £2500 a week.
Consider the maths.
We know that for anyone in England with more than £23,250 in income, assets and savings there is no state support for care costs[1]. 78%[2] of people over 65 own their own home – presumably almost all of which will be worth more than the £23,250 threshold. This is all fine in itself but when we come up against system pathways, underpinned by ‘bed blocker’ or ‘its for the best’ rhetoric, that sees a care home as the only conceivable option for people, it gets scary.
A care home will be a positive choice for many, but surely it shouldn’t be the only choice for all.
As a society and exacerbated by the media and even by ‘the care sector’ we seem to cultivate a ‘them and us’ view of older people. US are independent, hail, hearty, making decisions about our own lives with self-determination as a given – regardless of age really. Judy Dench, David Attenborough, the King and multiple folks in the House of Lords are all still ‘us’. Then there is ‘them’ older people. THEY are ‘needy’ and ‘frail’, they ‘lack capacity’ and need other people to decide what is best for them. My sense is that we all have feet in both sides of this false divide and that we don’t realise we have become ‘them ‘in the eyes of others until its too late. Until our lives and decisions are no longer in our own hands.
When we become ‘them’ decisions to move to a care home can be made about and not by us. People making that decision can be entirely well-meaning or motivated by financial or personal considerations that are not totally about us. And then…and this is the crux of my astonishment and secret fear…we have to pay massive money for it!
Do we, the public, with modest savings or properties, really understand what’s on our future horizon? What happens to us…and our assets when we flip into ‘themness’.
We blinking well should.
Many years ago, I used to be the registered manager of a care home, much smaller and owned by a charity, so very different BUT I do know how costly it is to run a residential service offering 24-hour support. I also know that state funding of social care for older people is so much less than what is needed, creating massive challenges for providers who operate in that space. So, I genuinely come at this from a position of empathy…and pragmatism alongside one of challenge. I know that care homes are right for many – I also know they are not right for me.
This is about choice from a range of diverse options. Not one size fits all.
So, knitting the threads. I keep thinking about the experience of the survey respondent and the determination and planning of my relative. I reflect on my own future and the future of my friends and other people I love and care about. Now I know where it leads, I really don’t want to walk blindly down a path to an unwelcome destination.
I realise I no longer have ignorance as an excuse.
I don’t dispute the fact that it costs a huge amount to run a care home, but I keep thinking about £1800 or even £2500 A WEEK! If I do need to sell my house and give up all my savings, what could I do with all that money? What choices could I create for myself now so that when the time comes, I have options. Options that work better for me personally than living with 114 strangers.
I think about my experience of running a Shared Lives scheme and wonder whether that might be one option for future me. I reflect on the kind of small-scale supported living services that help my friend with a learning disability and wonder why I haven’t seen anything like that for older people. I read lovely stories of cohousing schemes where like minded people decide to live together and support each other. I remember Homeshare and Keyring and models of support that are reciprocal. I consider how disabled people employ Personal Assistants and the role Direct Payment support services play in helping with things like payroll and HR. I muse on hybrids, off shoots and creative challengers to all these models and approaches and get excited by all that potential. Then sadly, I realise that if I was 85 today, stuck in a hospital bed and needing support there is no route in my town to any of these approaches and models, let alone the creative hybrids.
So where is the potential and hope?
Despite all this doom and gloom, I firmly believe that my future weekly £1800, combined with that of others has huge potential power. What might be possible if I and my 50+ year old peers got together to define what we want in the future…how we would spend our £1800 pw and the care or support we would expect for our money. What could our combined spending power and expectation create? What could be created if we started to learn from all those creative care providers and organisations…if we found out why they can’t help 85-year-old me right now…and what is needed for them to change that. Those are questions well worth asking, I think. #WhenIGetOld
Angela Catley
[1] https://www.nuffieldtrust.org.uk/news-item/offer-and-eligibility-who-can-access-state-funded-adult-care-and-what-are-people-entitled-to-1#:~:text=A%20person%20with%20more%20means%20than%20the%20threshold%20of%20%C2%A3,the%20care%20and%20support%20plan.
[2] https://ageing-better.org.uk/housing-state-ageing-2020#:~:text=Housing%20tenure%20by%20age%20group,2003%2F4%20to%202018%2F19&text=74%25%20of%20people%20age%2065,are%20paying%20off%20a%20mortgage.
