And so begins another winter of discontent, but this time with added pandemic just to spice it up a bit. The current situation is harsh. Every demographic is affected and so far only the extremely wealthy seem to feel that their money buys them anti-viral protection the rest of us can’t see – much like the Emperor’s new clothes. For everyone else there are furlough schemes, job losses, collapse of the arts and sports sectors, decimation of the hospitality industry, crumbling mental health, indefinitely paused cancer treatments, school leavers failed by the exam algorithm, students locked into their halls of residence… I could go on but I’m running out of suitably catastrophic adjectives – suffice to say that most of us are facing real threats to our livelihoods and ways of life.
But surely one of the bleakest stories of all (because that’s what you were after wasn’t it? The very bleakest thing I could possibly come up with?) is occurring in our care homes. After a decade of austerity, a paring down to the bone of resources for social care, and an escalating number of very frail, very poorly and let’s face it, very demented people in the population, we now have a disease sweeping the globe and sending our flimsy, stretched, underfunded care facilities into meltdown. This pandemic has highlighted both the importance of health and social care and the woeful lack of time, money and energy we as a society devote to it. It has caused everyone to shake their heads in consternation before they move on to their next concern, which may well be how they are going to feed their children, I’m not judging people for looking away – we’ve all got shit to deal with.
However, there is a group of people who cannot look away; those who have loved ones currently residing in care homes – and a few of their stories are now, finally, being picked up and dragged into the light for a good airing, thanks in significant part to the work of Nicci Gerrard and Julia Jones of https://johnscampaign.org.uk/#/ (@johnscampaign on Twitter). Some of these stories are heartbreaking. Family members, spouses and friends who are already used to being let down repeatedly by a system seemingly designed to make life for those with dementia so much harder than it already is, speak eloquently of their devastation. The pain of watching the people they care for deteriorate at an alarming speed when denied the comfort of familiar company.
The dilemma is as follows. Take your average care home catering to a mixture of those with nursing and residential needs. It is home to some who are able-bodied but cognitively impaired, and to others who are physically very frail but have wits as sharp as the proverbial razor. It is, in all likelihood also home to some who are both cognitively and physically challenged and some for whom quality of life is much reduced.
Along comes a pandemic. lets call it something catchy like COVID-19, and in the first wave there is, rightly, a national outcry as the virus sweeps through the care home population, not so much shuffling people off their mortal coil as ramming them off in a monster truck. The numbers of little red ‘C’s on our whiteboard at work increase as the COVID deaths creep up and the call goes out to the powers that be – SOS! Save Our Social care settings! And Lo, word comes down from on high, a ‘Protective Ring’ is to be thrown around the care homes. This protective ring arrives too late and is frankly meaningless when staff have no PPE and no testing capacity – a bit like being given a life-raft only to find it’s been made of lead and already has thirty seven people clinging to it and you’d actually drowned four hours previously, but it sounds good and people generally like the idea of a protective ring, it sounds like something you’d have in a soft-play centre, so we all nod and smile our agreement.
It then transpires that a protective ring means nobody can visit care homes any more – that we need to protect our loved ones from ourselves, for we are the vectors of disease and must be kept separate from the vulnerable. Makes sense. Nobody wants to be the dude who came into the home, sneezed, and took out forty grannies. So the care home becomes a fortress. A fortress with very permeable walls where staff come and go, often as unprotected as they are undervalued, returning to their families at night, thankful that they at least have a job even though they’re putting their own lives at risk and it breaks their hearts every time a resident dies. But for the family and friends of those residents entry is no longer permitted, communication ends and pretty soon, those fortress walls start to feel like a prison. The staff do their very best, as always. They try video links and phone calls. They keep families updated with Facebook posts and emails. They might bend the rules if someone is dying, they may say, ‘come in so he can have someone with him at the end,’ but in doing so they risk the health and welfare of their other residents. They compromise their duty of care to the many by trying to accommodate the few.
And as we all rush around in our COVID haze, poring over case numbers, vaccination programs, ICU admissions, masks, bubbles, eating out to help out, moonshots and trips to Barnard Castle – while we are absorbed by the pandemic, the people with dementia living in these care homes often have no idea of what is happening. The flimsy threads connecting them with the outside world are withering away and their loved ones are left only to imagine the confusion and sadness growing in their place. We have a terrible dilemma, stuck with the same bleak choices evident in the wider population but magnified in the microcosm of a care setting – quality of life for the majority versus keeping the few alive, no matter what (I know that nearing 50,000 can hardly be considered ‘the few’ but bear with me).
If we look at COVID deaths as a proportion of total deaths in care homes this year it is clear that they form the minority. Many more people have died from other causes, and most of those people will have died alone, having had no contact with family members for several months. Were these people or these families given a choice? And if they had been given a choice would the individual have said, I’d rather take the risk of catching and almost certainly dying from COVID, whilst continuing to see the faces and hear the voices and hold the hands of those I love‘? There may well be people who would have rather seen their family throughout March, caught COVID and died rapidly at the age of ninety-two, than had six months of isolation and loneliness only to reach their ninety-third birthday and die of a different brand of pneumonia.
If we follow this line of argument, that people’s mental well-being is the priority, then surely we should open the care homes back up, welcome the return of families, throw the doors wide to the sticky toddler clambering onto granny’s knee, smearing her face with their germy little hands, the well-meaning son bringing more than just flowers into the communal lounge… But if we do this COVID will be back within days, mowing down the population in a second wave frenzy. And that can’t be right either. Because for everyone in a care home who might have opted for company rather than prolonged life-expectancy, there will be another person who would really rather avoid exposure to a killer disease thank you very much and if that means not seeing Barbara for a few more weeks then so be it.
What to do? There must be a way to allow family to safely visit their loved ones without putting other residents at risk. There must be countries where they’ve got this sorted? Mustn’t there? Maybe it’s just not enough of a priority at the moment for those in power. Don’t get me wrong, the government have got a lot of issues on their plate, not least, many bin-fires of their own making, but surely this needs to be addressed? And perhaps on this occasion technology is not the answer.
In the news today we hear that care homes have been offered 11,000 i-pads to facilitate communication between residents and family members. Presumably these are the very same i-pads offered to schools for their vulnerable low-income families in order to allow them to access education during lock-down? The same i-pads that never actually ended up falling from the magic tech-tree or reaching those who needed them – oh those I-pads, yes. But, lets suppose for one moment that these devices make it to their destination this time around – people with dementia are often more bewildered by virtual communication than not having a visitor at all, looking at the person holding the device rather than the person on the screen, not understanding why the girl on the telly is talking to them, and ultimately providing zero reassurance to the family member who called them in the first place that they are content and happy. Nobody wins. We need a solution that involves physical contact – and with a highly contagious disease, I realise, this is a big ask.
A similar but equally lengthy issue opens up when we look at discharging people from hospital back to care homes.
- Do we want COVID positive patients arriving at care homes? No.
- Do we want COVID positive patients to stay on hospital wards for two weeks when they are well enough to be discharged, taking up valuable beds that would otherwise be occupied by people with heart disease and cancer? No.
- Should we have COVID homes where all the COVID people go, like modern-day leper colonies? No. And even if we did, which care home operator is going to volunteer to host these particular viral hotspots? It doesn’t look great on the brochure does it?
What to do?
Helpfully I have chosen not to provide you with the answers to today’s little conundrum. I think it makes it more rewarding all round if you come up with the solution yourself, more satisfying, yes? But if you do, please be sure to pass it on to the policy makers – Cheers.