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David Grayson for Carers Week 2020: on calling carers

A few weeks ago, I spent several hours each day, over several days, calling carers. My objective was simply to check in with some of our Carers UK members and others I knew to be caring; to see how they were getting on during the COVID-19 lockdown; and to learn about any specific challenges they were facing.

Hearing directly and in real-time from carers is always informative, thought-provoking, and inspiring. I don’t mind admitting that even an unemotional Yorkshireman like me, was deeply moved by a number of the conversations.

As our recent Carers UK report about caring through COVID-19: Caring: Behind Closed Doors, showed, the great majority of carers are caring more during the pandemic and the lockdown. This was also repeatedly mentioned on my calls.

I did not know in advance, which parts of the country I was going to be calling. In fact, I spoke to carers in Northern Ireland, Scotland and Wales, as well as different parts of England from the South-West to the North-East and from Greater Manchester to London and the South-East coast.

Parents struggling to home-school their autistic children, told me how the loss of regular routines was disturbing their children and making them more agitated. Elderly husbands and wives spoke to me about having to take on more of the caring for their partners, as their usual care-workers had to reduce or stop their visits. Older parents spoke about struggling to look after middle-aged sons and daughters with learning disabilities and/or physical disabilities whose normal day centres are closed.

I was struck by how very modest the things that carers previously relied on for respite breaks but which they cannot currently do, are. For example, one man told me how he used to enjoy early morning swims three days a week – both for the exercise but also for the socialising with the other regular swimmers.

It was heart-breaking to listen to some of the things that are really worrying long-term carers during the pandemic. For the husband caring for his wife with Alzheimer’s, the loss of her usual weekly routine of visits to a day centre, has made her even more disorientated. She doesn’t recognise her own home and gets agitated, demanding that he take her home. Getting in the car and driving around for a while, calms her down. In the early weeks of the lockdown, however, his additional concern was that he might, inadvertently, be breaking the law.

Time and time again, carers described their deepest worry: who will look after their partner or (adult) child, that they are caring for, if they are taken ill and cannot manage any longer?

One of the things that I have learnt about carers, during my volunteering with Carers UK, is how infinitely adaptable and creative carers are. I think of the 83 year-old looking after his wife with Parkinson’s, telling me: “I am not all that IT-savvy but I am happy to learn how to use Zoom so that I can meet up virtually with other carers for a chat.”

I also think of another gentleman caring for his wife, who were making their own protective face masks.

It was good to hear Carers UK members – without any prompting from me – talk about the many good things they think we are doing for carers. Although, unsurprisingly, I did also hear from some people, who think we need to be more outspoken on things like the rate of Carers Allowance, the extra expenses that carers are facing through the pandemic and the need for more substantial, ring-fenced budgets for respite care in the future. My response? We are working on these ‘asks’ - and much more!

We all know the adage that “if you want something doing, best ask a busy person.” I was reminded of this, as several carers – despite how busy they were with extra caring – still find time to help elderly neighbours, for example, with their shopping and meals.

It was humbling to listen to so many individual stories of selflessness. I quickly lost count of the number of carers who, after describing some really tough circumstances, still commented: “But we are surviving! I am sure there are a lot of people worse off than us!”

Traditionally, Carers Week is an annual opportunity to raise the profile of unpaid carers and caring; and to help connect more carers to relevant advice and information. Carers Week 2020, of course, is very different because it has to be virtual. It takes place against the backdrop of the continuing COVID-19 pandemic.

For me, as chair of Carers UK, this Carers Week is also an opportunity to ask: as a society, do we really believe it is acceptable for so many carers – especially those caring long hours each week and over many years, often in old age – just to be ‘surviving'? Surely, we can do better than that for carers?

Carers UK and our partners in Carers Week are determined that the UK will!

 

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