The empty hours: living very different lives under lockdown

Dame Philippa Russell movingly describes a day in her life under lockdown with her son Simon, who has learning disabilities, and reflects on VE Day. 

We are six weeks, 1056 hours, into lockdown and Simon and I are feeling the pressure of his ‘shielded’ life. I admire the stalwarts who have settled down to weeks of social isolation with typical British stoicism. But Simon’s and my lives have changed overnight. His daytime activities, his precious art, his friendships through the local church, fitness classes have all gone. We feel very alone, and there is the very real terror of what would happen if either of us or his wonderful support worker Richard got ill.   

Our day begins at 6.30am, an Amazon delivery clattering in the porch – the cake tins to fill another long morning by making a cake to celebrate VE Day. A nice idea that goes wrong by 8.00am as we have no flour and Simon anyway rejects a cake when we can’t have a VE Day party.  

Shielded or not, Simon, like many people with learning disabilities, needs to go out. We are allowed daily walks, even  a little drive in the car. But going out is not a luxury. We can’t get a home delivery and cautious shopping, meticulous queueing with hand sanitisers fills the morning. I now have flour for the VE Day cake but without the party, it loses its appeal.    Simon gazes longingly at the locked doors of the Pallant House Art Gallery on the way home. He misses his special art community, I miss my home in London.  The days are long and tiring even if life is so limited.

We practice using masks for a hospital appointment. My daughter has made us colourful stylish versions, but they are not a success. Simon finds conversations difficult if he can’t see people’s faces. We move on to gardening and flags for VE Day. We need a celebration somewhere!     

We plan a quiet early evening walk, Chichester’s streets are pretty and deserted as a film set. But I am nervous. We have been stopped by the police and asked where we were going. I am told that I should ‘carry a letter from our GP’ to explain why we are out so often. I put Simon’s latest review on my phone, but the police car today swoops past with a cheerful wave.

At the end of a largely housebound day, there are quiet moments in the garden catching up with my virtual world of friends, family and fellow carers on my phone..  Simon crosses another day off his calendar and asks if the garden centres will open next week. It’s time for spring planting and he has worked hard getting his vegetable beds ready. I long for ‘grown-up conversations’ about how we can all survive this covid-19 crisis.  Surely this is the ‘golden time’ to promote a real spirit of coproduction and shared responsibility across all the generations rather than creating an intergenerational divide?  As Simon’s key worker by default, I feel frightened by the negative assumptions about older people and the threat of yet more lockdown!

It's ironic, isn't it, that we have VE Day celebrations  this year, the end of a world war and start of a new world order. I am old enough to remember being bombed, the relief even aged four that the war was over. What came after was of course hard, but it gave us the welfare state and the NHS which we currently celebrate every Thursday.

I hope that we can see the post-covid-19 era as a 'golden opportunity' to do things differently and reimagine social care and support.  We are all architects of that very different future.