‘It’s time to go now. Haul away your anchor, ‘tis our sailing time’ – Farewell Shanty
Before COVID-19 invited itself into our lives, I wrote about a road trip navigated by my dad, destination unknown to me in the driving seat because his dementia meant he struggled to describe it, but which it turned out had been absolutely clear to him: a vast custard slice at Barton Grange garden centre in Lancashire. I’d gone up to spend time with my dad while my mum visited my sister in Scotland for the weekend. We ate lots of things my mum wouldn’t let him eat. We went to watch his beloved Sale Sharks. We went to see his best friend from school who was in hospital. These were the things that anchored my dad to his personhood and identity. I made the connection to a passage from a book ‘Holding One Another’ by Hilde Lindeman, drawn to my attention by Professor Gerard Quinn:
‘It’s not only other people who hold us in our identities. Familiar places and things, beloved object, pets, cherished rituals, one’s own bed or favourite shirt, can and do help us maintain our sense of self. And it is no accident that much of this kind of holding goes on in the place where our families are: at home. The home…is an extension and mirror of the living body in its everyday activity and is thus a materialization of identity…our homes manifest who we are at the same time as they provide the physical scaffolding that supports who we are.’
A few weeks later he had ended up in hospital with a suspected hernia, but in the process had a minor stroke, leading to a fortnight in hospital. While we could be with him for most of that time, he suffered delirium and the whole experience precipitated a marked decline in his cognitive health. He also began to have myoclonic seizures.
Before this admission to hospital, my mum and dad had already started talking to Helen Sanderson, to explore how they could both keep living the lives they wanted to lead. The process had begun by exploring what mattered to them each and collectively in life, what challenges they were or might face in future in carrying on with those things and crucially what solutions there might be to help to do so. That is to say, it focused on the things that ‘held them’ or as Professor Quinn referred to it, to the ‘scaffolding of the self’ – on those things that provide us all with meaning, purpose and a sense of security and belonging and which through doing so reaffirm who we are and our sense of worth. Following his return home, we decided together that they were going to need more support to do so, but as a first step we wanted to talk to the people already in their lives, so with support from Helen and Cath Barton at Community Circles we created a ‘circle’ of family, friends and neighbours. As my mum has put it “Though there are sources of “official” help out there, nothing could compare with the experiences we enjoyed by having access to a community circle. Familiarity is key for those affected by Alzheimer’s…’.
And up until March 2020, though the impact of Alzheimer’s itself was definitely becoming more profound, the circle meant they could both continue to do things that mattered to them.
And then came lockdown.
Lockdown has upended all of our lives, breaking connections, disrupting routines and rituals, stopping us from being in the places or doing the things from which we derive meaning and purpose and identity. For people living with dementia, whether in the community or in institutional care it has proved catastrophic. Anecdotal evidence is now confirmed by academic research on the impact of isolation on people living with dementia. The Long Term Care Covid project had already begun to include mortality rates of people with dementia that had died not with Covid-19 but because of the impact of the restrictions on their health and wellbeing.
Covid-19 did not kill my dad. But he died because of it. He had food, shelter, could get washed and dressed, support with medication – all the things to keep him alive. But lockdown unravelled the life that provided him with his identity and sense of self – his reasons to be alive. Unable to really understand why, he came to see my mum and latterly me, as the ones depriving him of these things. And so he fought back by refusing his medication, to get dressed, to have a wash. He rejected the support we brought in from a homecare agency. As challenging and inconvenient as all this was for us, in reflection I think he was protecting the one thing he could protect: his autonomy and sense of self.
And then he ended up back in hospital, for 9 avoidable days. And it finished him off altogether. My dad died in hospital on 12 September 2020.
What is absolutely clear from all this is that people’s experience of dementia and their ability to live as well as possible with the condition is mediated by their interactions with wider society. This clearly opens up the possibility of a social model of dementia, yet I’m afraid that despite some attempts to do so in recent years, dementia remains dominated by an overwhelmingly medical model which primarily implicates the disease itself.
But there is hope.
Last week I attended an Alzheimer’s Society half day conference where they shared their emerging vision and policy for the future of social care. It was pleasing to see they adopted #socialcarefuture’s vision:
While this vision is very much the product of a collective effort from members of our movement, in writing it I had my mum and dad very much at the front of my mind. And what it says is that the goal of social care should be to help people to develop, maintain or repair the ‘scaffolding’ & to remain firmly anchored.
And that is what ‘personalised care’ (which the Society says it wishes to promote, above narrowly drawn life and limb ‘personal care’) must mean too: not the narrow idea of delivering a transactional service in a more ‘customised’ or slightly kinder and more responsive way, but about attending to the things that anchor us in the world and in our own selves. It is about starting with the question ‘what matters to you’ and it must cause us to see care and support not simply as a transactional service delivered ‘to’ people, but a the web of relationships and support that we draw on to live our lives in a way that maintains our wellbeing.
If the past, terrible year has taught us anything it is this: these are the things that provide us all with the anchor we need to live well. I fear that for many people living with dementia, that anchor is too often hauled up before they are actually ready to set sail.