It is Carers Week 2020 and we are in week 11 of the Covid-19 pandemic. Life for the UK’s 6 million carers has changed overnight. My son Simon and I are feeling the pressure of his ‘shielded’ life. Simon has brain damage, learning disabilities and the coronavirus ‘flew in’ just as he was beginning a series of investigations for a long-term heart condition. He is very vulnerable, shielded and I am in the age range when my grandson (with autism and always speaking the truth!) reminds me that I am 70 per cent more likely than my peers to die if I contract Covid-19. I don’t like being reminded of my own possibly imminent mortality and I admire my neighbours who have settled down to weeks of total social isolation and wish we could do the same. But Simon sees shielding as house arrest and we have to go out.
Like many other carers, I can see that Simon’s life has changed overnight. His daytime activities, his precious art, his friendships through the local church, fitness classes have all gone. We have lost our support structures, the relationships, the routines, the feeling of being part of a community. We feel very alone, and there is the very real terror of what would happen if either of us got ill.
Life under lockdown is different for all of us who care. Walking through Chichester’s pretty streets, people flit past us in masks and gloves. Simon doesn’t like masks. He needs to see faces in order to properly understand conversations. He asks repeatedly when we can see “people smile again”. But the world has changed and we need masks for a long-delayed hospital appointment. Masks seem a small price to pay for the reopening of the NHS for families living with long-term conditions and disabilities that need regular monitoring and treatment. I tell myself that we have survived two other epidemics in countries with no infrastructure of public health and where survival was your own common sense, personal and community responsibility. It encourages me in thinking that together we can somehow survive this season of the plague.
We hope that we are winning the war against Covid-19, but the aftermath will challenge us all. We have learnt some good things about human kindness and support from our local communities. But many of us feel also feel that we have experienced ‘house arrest’, we have so missed family and friends and it’s been hard. And of course, we have seen some terrible challenges in our care homes. My husband died in a wonderful care home, just before Covid-19 hit us so hard, and I feel passionately that we have to recognise, support and celebrate the many care workers who actually became part of our own extended families. Carers – in families and in the care workforce – must now work together to persuade government and others to finally rethink what we mean by 21st century social care!
Covid-19 has brought major financial, personal and practical challenges to carers. Now, we must be part of the ‘recovery’ process as (hopefully) services and support reopen. Carers UK’s report, Caring behind Closed Doors, clearly sets out the challenges faced by carers living with covid-19. Living well in lockdown has been hard. But Carers UK reminds us of the importance of solidarity, the value of carer networks and peer support and the importance of carers at the heart of any Covid-19 developments.
The Secretary of State has now established a Social Care Covid-19 Task Force, primarily to tackle the care home issues. But I hope it will look much wider at what we mean by health and social care, and how hard-pressed local authorities in particular can reset, restore and recover the investment in care and support which has been lost in the epidemic.
The crisis is not over. We must be part of the big debate about how we survive in a world where Covid-19 remains a long-term threat. My final thought is are that if we clap again on Thursday evenings, we must clap for all our carers – why not ‘key worker’ status for family carers, with an identity card to celebrate our role and to wave to prove ‘we are worth it’?
Dame Philippa Russell is Vice President of Carer’s UK
2 thoughts on “Life in a pandemic – a carer’s perspective”
Thank you for a wonderfully clear comment on your real world experience of the impact of the pandemic. The ramifications and huge demands on you as carer feel overwhelming. It shows such a fine-tuned juggling act of carefully constructed manoeuvres to ‘hold’ both emotionally and physically someone who is so vulnerable, whilst having none of the ‘fall-back-ability’ on resources and community support. Heartrending and important for the leaders, politicians and financiers to take heed and do something to assist, rather than assemble sound-bites which offer pseudo-comfort.
Thank you for this response. I’ll send it to Philippa who wrote this guest blog for us. I fully agree with what you say.