Where did you come from, where did you go?

This is my dad, dancing to Cotton Eyed Joe in a mill shop in Atherton, on August 1st 2020. We’d been trying on shoes. It was testing to say the least. But here is is laughing, engaging with the staff, dancing. Being my dad.

My dad had Alzheimer’s.  He died with Alzheimer’s.  His death certificate says he died *of* Alzheimer’s on 12 September 2020.  But he didn’t.  He died of acute kidney failure brought on by dehydration following an avoidably elongated spell in hospital last August, which initially came about because he’d stopped taking his anti-seizure medication, which happened because lockdown restrictions made him feel like he’d lost control over his life and so he rebelled in the face of people, including me, trying to force him to do so.  As his friend said at his funeral service ‘he was a stubborn Yorkshireman to the last’.  If dehydration was the price of being in control, of life, or death, then so be it. 

But he also died when he did because of decisions I made to place my mum’s life and her wellbeing above his.  I pushed her and created permission for her to move towards something she and my dad had absolutely not wanted – his move to a residential care home.  When he was admitted to hospital, I colluded with people there to keep him there until he could move to a care home, rather than back home.  Because that went on so – avoidably – long his health deteriorated.  And that’s why he died.  We’ll never know exactly why he became so unwell.  But if I’d taken a different decision – for him to be discharged home on the same day he was admitted – he’d have certainly lived longer. 

Why did I make that decision? I made it because otherwise my mum was going to collapse, physically and mentally, and because neither me or my sister could sustainably step in.  And I did it because the paid support we were able to access to support my dad and mum at home just wasn’t up to the task, despite the fact it was the most expensive available.  As already explained, my dad’s sense of autonomy was central to his wellbeing.  As was his sense of dignity. He was very self conscious about his body.  On the first day the homecare agency staff came, my mum had made clear my dad liked to dress himself but benefited from supervision as he would sometimes get a bit lost.  They ignored that and dressed him.  And that was the last time he would let them be involved in anything we might label ‘personal care’.  Imagine when you have even less or no money and no control at all.

And yet, our answer to that was for him to move to a care home, where he had nothing to anchor him in his own self.  We did not do this in his best interests, but in ours, feeling we had no other options. He wasn’t there long.  After 4 days he was back in hospital, dying.  We were with him right til the end – us his anchor in a foreign place. He ours.  And then he pulled his anchor up, and of course to a large degree ours too, and sailed away.

Yet this last week I’ve felt angry at the Alzheiner’s Society ‘cure social care’ campaign. 

Maybe it’s partly because it is too close to home.  There are bits in it that made me feel physical pain, like when she tries to hide her tears, and when she pleads with her husband to help her. The remoteness of the local council.  Maybe it’s because I was driven by a need or desire to ‘unburden’ my mum and myself.  Maybe it made me feel guilty that my deeds did not accord with my professed values. 

Possibly a bit of all of the above.  But ultimately it also made me angry for two reasons.  First, because the film offers only the so called ‘carers’ perspective and renders her husband an object.  While it might speak to the truth of many ‘carers’ experiences, it says nothing of that of people who themselves have dementia.  And this was carried on via messages on social media which said ‘a dementia diagnosis can claim more than one life’ with (authentic) quotes from carers about their sense of losing themselves, but implicitly the suggestion that the loss of life and living a life of the person with dementia was already priced in.  I’m shocked at this not only given the Society has recently published a new policy on personalised care, the very measure of which is to ensure the person is the protagonist in their own life story, but equally because it infers that the focus of the Society is curing dementia or merely finding a way to unburden would be carers.  The film provides no sense of the alternative, and I would guess that many watching will not have thought ‘they need some support so they can be together in the place they call home’ but ‘he should be in a home.’

Second, that the Society has evidently spent a huge amount of money on a campaign that repeats a narrative that has evidentially failed to work for at least 20 years – of a ‘broken social care system in crisis’.  If one look at the reliable Ipsos-Mori monthly issues index, social care has barely registered as an issue of concern for the public for several years, including all the way through the Covid-19 pandemic.  Sure, such messaging can generate coverage or secure signatures to a petition, but its impact on public salience does not positively shift the dial.  There is every reason to think it may do the opposite.

And so here I am, living with the guilt I feel about the decisions I made, yet knowing that I made them because community-based support – even when you have the money to pay – is shit.  Knowing that the ‘social care sector’ which is so keen for people to just wake up and see its value, is so often a shit employer and a provider of shit services that fail to meet people’s needs or aspirations.  Knowing that it is far too easy to collude in all of this because it helps us to feel less bad about decisions we have made about the people we love that go completely against what they wanted, or we believed we would uphold.  And just so terribly sad that the ‘leading dementia charity’ doesn’t seem able to accept any of this and will carry on promoting messages that entrench the thinking that stands in our way.

The Society is right about one thing – there is no ‘cure’ for dementia.  There’s no medical treatment of any significance for dementia either.  Maybe there will be one day, but not for anyone diagnosed with dementia today, or next year or in even 5 years time. For now, there is only striving to live your best life with dementia and to die as well as possible.  And for that to happen we have to massively up our game when it comes to care and support both for people who themselves have dementia and the people with who they share their lives.  I understand the temptation to place all the accent on how awful it can be.  I’ve seen it for myself.  But it hasn’t worked.  We have to balance our account of the challenges people face with a compelling vision of what can and should be, to give hope to people with dementia, those supporting them and to create the sense of possibility so evidently lacking among our politicians and across society. 

As Thomas Coombe’s and Anat Shenker Osorio point out:

“If we do not make the case for the world we want to see, who will?”

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