In Alison White’s memoir, Letter to Louis, we share in the first eighteen years of her son Louis’s life. From his precarious beginning to the traumas and joys of toddlerdom – when many were convinced that Louis would neither walk nor talk – Alison guides us lovingly through Louis’s childhood years. Through the book we come to see what life is like when one of your family has needs that challenge everybody, but most especially the child themselves, and to know the courage, creativity and compassion that flourishes when the apple-crumble mix hits the fan.
Here, Alison shares this snapshot of life for Louis as lockdown approached. It is signature Louis, funny, heartbreaking and insightful, and it’s a great introduction to Letter to Louis, where the reader has the privilege of getting to know him a little better.
Letter to Louis is serialised this week on BBC Radio 4 each morning at 10.45 a.m.
‘Will the virus blow away?’ Louis sounds hopeful. ‘Will it blow away soon?’
How do I answer that question?
‘It might take a little while,’ I answer.
‘No, oh nooo,’ Louis howls.
‘Let’s not think about it now,’ I say.
The radio is on. Louis has taken to turning on the radio to listen to the prime minister’s five p.m. announcement. He is listening out for the word ‘lockdown’. I have warned him it is coming and until lockdown happens I have told him he can continue to have his physio with David. This is Louis’s favourite activity. I’ve stopped everything else over this last week. Every person Louis comes into contact with increases his risk, especially as he needs help in all that he does.
I keep discussing matters with Value Independence (VI). They are Louis’s care providers, who provide twenty-four-hour care to him in his own home. Each day seems to herald more worrying news, and VI has been trying their best to adapt. They have reduced Louis’s rotating carers down from ten a week to eight, and now down to four. The remaining carers are getting longer and longer work shifts. But even this current number is still worrying me. Louis’s two team leaders have needed to withdraw. Emily has symptoms of a sore throat and Matt is concerned; he lives with his brother who has just qualified as a nurse. His brother is going to be on the frontline and Matt says the protective kit provision at his brother’s hospital is dire. VI is waiting for protective equipment to be supplied to their care company. They have gone out and bought masks and gloves from a construction company while they wait. How can we protect Louis from the virus entering his house yet meet his care needs? In many ways we are lucky. Louis lives alone, due to his specific needs; we do not have the added complication that most other adults with learning disabilities in supported living have, in groups of three or more – they have larger rotating care teams.
It’s 20 March and I’ve stopped all of Louis’s activities. His swimming lessons with Sue, his yoga with Jo and his guitar lessons with Richard. Louis howled about Richard. He has been visiting Louis for years. Richard is in his seventies and painfully thin, dressed in black, with a shock of white hair and long thumbnails that could scare, but Louis doesn’t notice. Richard has mild dementia. Louis looks forward to Richard’s visits every Sunday and Tuesday, when they strum and sing; their relationship comforts and occupies them both.
I called Richard up yesterday.
‘I’m sorry, Richard. I’m going to have to ask you to stop visiting Louis until this virus scare is over.’
‘I’m OK,’ says Richard. ‘I’m happy to come.’
‘But the thing is, Richard, you are at risk as well as Louis. You need to look after yourself for now.’
‘There’s just me and my poorly dog,’ Richard replies.
‘Can Louis maybe talk to you on the phone instead for now?’
‘Sure, Louis is my pal. So am I coming on Sunday?’
I have to repeat myself with Richard many times.
‘I’m sorry, Richard, not for now.’
‘I understand,’ he says, but his voice is sad.
‘I’ll go and tell Louis now. He’ll probably get upset and want to call you. But if he asks you to come, I’m afraid you can’t.’
‘Yes, that’s all right. So am I coming on Tuesday?’
‘I’m sorry, Richard, not on Sunday or Tuesday for a while. Have you rung your sister?’
‘I’m not going there. I’ll be OK. I need to stay with Danny, my dog. He’s poorly. Did I tell you about the time I found him at the dog rescue centre?’
Richard has told me this story. I let him tell me it again. I hope Richard will be OK on his own.
Louis has been listening to the radio on the sideboard of the kitchen. As I sit down at his kitchen table, he shouts out, ‘Hooray’.
There’s been no mention of ‘lockdown’ today.
It is Sunday 22 March, Mother’s day.
But I know, I know it is coming. It should have come already in my view. I’ve been feeling horrified as I’ve watched events unfold.
Sandra, a new member of Louis’s care team, is cleaning. She has been cleaning all day and I’ve been getting more equipment: food, cloths and soaps. The slow cooker is on, making a stew to be blended, containerised and frozen for future meals. Louis has food allergies and can’t chew.
David, the physio, has said he is fine to keep coming to Louis until we are all forced to stop. He says he has hand sanitiser and that he keeps his car scrupulously clean. He will come and take Louis for walks outside with his walking frame. They will choose somewhere remote to exercise, but I’m still nervous. David has other clients. Who is he coming into contact with? He could unwittingly bring the virus to Louis. But David is incredibly important for Louis’s health. The exercises keep him mobile.
My stomach is tight. It is Monday morning. I’ve been waking each morning with my stomach frantically churning. In two days’ time I will leave for Brighton. My younger sister Rosie is to go into hospital to have her baby. Her placenta has attached itself dangerously over her cervix. I will look after her four-year-old daughter Ella-Rae so that her wife Dawn can be with her for the caesarean birth.
I get up and ring David. He’s meant to see Louis this afternoon.
‘I’m sorry, David, I think the time has come.’
‘Yes, I understand.’
‘Louis will call you.’
‘Yes, I’ll try to explain. I’ll tell him we will bank his hours, that we can think of all the things he can do when this is over.’
Now I must tell Louis that David has been stopped.
‘Oh nooo, oh nooo,’ Louis howls.
I try to calm him down.
‘We have to be so careful right now. But don’t worry, your carers and me can take you for walks while David can’t come. We can still do that.’
‘When will the virus blow away?’
‘I don’t know.’
‘Can I have four hours with David when it’s blown away?’
Louis is sitting in his wheelchair holding his maps tight in his hand. He is glancing at me with a hopeful look in his eyes. He’s watching my face waiting to see my response.
‘Four hours, Louis!’ I say, exaggerating my surprise.
‘Yes,’ he says in a voice that is hopeful.
‘Four hours!’ I say again, sounding incredulous.
‘Yes,’ he says, grinning at me.
‘Hmmm, I think when this is over, you can have four hours with David. Not all the time but definitely a few times.’
‘Hooray,’ Louis cries out and collapses forward in his wheelchair in giggles.
At eight p.m. the government announces lockdown.
I call Sandra at Louis’s house. She is on a twenty-four-hour shift. She panics. She has two children of her own who have underlying health conditions. She needs to be at home with them. I tell her I understand. Who within VI can most safely care for Louis? VI has three other young clients receiving palliative care, and their lowest-risk carers are on those teams and self-isolating already.
I can’t stand still. I’m frantically moving around as I pack my bag, dropping things in a panic. Please, please let Rosie’s baby be born safe and well.
I sit down on the edge of the bed. Can we reduce Louis’s care team down further and keep everyone protected?
Maya and Ollie from VI have offered to take on this enormous care role for the time being. We carry an extra bed into Louis’s house and he is delighted that his mother is not moving in with him yet . . .
Alison White is the author of Letter to Louis, out now in paperback and ebook.