Home, Sweet Home

You are excited to be coming home.

‘The ambulance is booked for ten o’clock. I should be home by lunchtime,’ you say.

I hear the elation in your voice, the expectation of what ‘home’ looks like. How can I tell you that it doesn’t look like that any more? That there is a hospital bed downstairs, a special stool and grab-bar in the bathroom. How can I explain that Mother is still in hospital following her fall, that I have had to make a formal complaint against her psychiatrist to have her case reviewed, that it is unlikely she will be discharged now before you die.

‘That’s great,’ I say. ‘I will drive over and be there to make you lunch.’

The best laid schemes o’ daughters and men . . .

The ambulance breaks down on the M25. I am caught in traffic. I hope that I might still make it to the house before you, to tidy up, fill the fridge. But even the second ambulance beats me to it.

You are already exhausted when I arrive.

‘It is so good to be home,’ you say, with tears in your eyes.

I try to talk to you about the care you will need. It turns out you have discharged yourself early before a care package has been put in place. I struggle not to let my panic turn into anger as I eye the steps, the narrow doorways unadapted to wheelchair use, the bathroom with no shower. I inspect the hospital bed which Mother had railed against receiving into her house. It sits there, this foreign piece of furniture, in the middle of the dining room where last month we hosted a party for you and your friends. It seems to announce the finality, the seriousness of your return and what it really means.

‘I do think we should call the Hospice and get a nurse to come round,’ I say, focusing on each word with care, not wanting to upset you.

‘I will be fine. I can move around with a zimmer now. I don’t even need my chair,’ you tell me, smiling.

You are so brave, so determined. You have been a ‘model student’ according to the Occupational Therapists at Stanmore. When have you ever been anything else? But this time no amount of study or practice is going to make the difference that is needed: the difference between life and death.

I ask you what you would like from the shops and you reel off a list that is so pathetic, I have a job holding back the tears. One large potato, one tin of tomatoes, two apples, two chicken breasts.

‘You won’t be able to cook for yourself,’ I say, blinking at the piece of paper with my scrawled writing.

‘I made scrambled egg with one of the OTs in hospital,’ you tell me, proudly.

I cannot bear this – this forced jollity, this fiddling while Rome burns.

‘Mum is going to be assessed by a new psychiatrist tomorrow,’ I say.

‘Oh,’ you reply. Your face crumples. ‘I miss her more than I can say.’

*

Later, I make a meal. You eat it and we have a glass of wine each. You say again how lovely it is to be home. It is nine o’clock and I am so tired I could fall asleep in my chair. I suggest getting you ready for bed.

Two hours later we have managed to get you ‘abluted’ as you would say, dressed into clean pyjamas and into bed. I am wracked with anxiety. How are you going to cope once I have left?

I make a silly performance of ‘tucking you in’, then I bend and kiss you on the forehead. The echo of my own childhood bedtimes is strong, and I can see you are thinking of them too.

‘Would you like a bedtime story?’ I say, to make you smile.

You do not smile back. You look pained. ‘Yes, please,’ you say.

I wish now that I could say how I take a book and read. The Wind in the Willows, perhaps, doing all the voices, as you used to do.

Instead, I balk at the thought of this role reversal. I kiss you again, half-laugh and say goodnight.

I am tired, so tired. And worried what the night will bring. Will you fall from the bed as you did once in hospital, forgetting that you have only one leg now? Will you cry out in the night? Should I sleep alongside you?

I go to bed with these and many more questions ricocheting around my mind.

The night passes without incident. The next day dawns. You are still here. I am still afraid.

As I write this now, a year on, how different things feel.

I should not have let my fears and tiredness win that night.

I should have read you that story.

 

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