It’s a sunny mid-July evening and my partner is breaking in to my mother’s house through her open bedroom window. As he swings himself up and eases lengthways through the narrow gap like a man posting himself through an oversized letterbox, not for the first time I am profoundly grateful for the differences between his physique and mine. He drops out of sight behind the net curtains and I hear the front door unlock and open at the side of the house. I don’t want to, but I go inside.
Her clothes are where she undressed for the night before, neatly laid on the back of a living room chair. She is still in bed, on her side I think. She has been laid there all day, not answering my calls, unable to move: a fish out of water. She just about responds to our entreaties with the vaguest of noises but her mouth is open and dry.
I call an ambulance. They ask what’s wrong and I try to explain. I say maybe she has had a stroke? The operator asks why I think so and I haven’t the faintest idea, because it is really only my brain panicking and grasping at straws as to why she’s lying there like that. They tell me it’s on its way. We wait.
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It has been an otherwise normal day at work in central Birmingham. She hasn’t been well for over a week so I try to call before heading to London for one of my quarterly overnighters: hotel stay, breakfast meeting in the morning for the committee I look after. When I call from home and she still doesn’t answer I’m puzzled. When I call on my mobile as Phil is driving me to Sandwell & Dudley station and she still doesn’t answer, I am properly worried. She’s unwell, she’s on her own, I know she can’t be somewhere else. We don’t go to the station. We go straight to the house, without our keys of course.
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The ambulance guys gown her up for modesty, my poor immobile mom in nothing but her pants, and I go with her in the back while Phil follows. SatNav takes them erroneously up a cul-de-sac before we even leave the village, but we make it to A&E in Stafford eventually. There are cubicles and curtains and waiting and inspections. A blur of shapes and faces. The long and short of it is that she ends up in Critical Care and so do I, sleeping (as far as was ever going to be possible) in their little overnight room. The existence of these rooms is something you don’t find out about, I guess, unless you work there or someone you love looks distinctly like they might be about to die.
The next few days don’t bring a great deal of clarity, for the doctors apparently or for me. They seem to decide she did not have the suspected heart attack (definitely not a stroke), but are much less clear on what is actually going on. We have conversations involving a lot of euphemistic medical jargon and my shock in the face of my mother apparently being at death’s door means I lack the mental capacity to interrogate, retain or understand exactly what they’re telling me.
I don’t know what I’m doing.
She is in the bay at the end of the corridor, the one where the light is grey and flat, the one where I imagine they put the most critical of Critical Care patients. Gradually she is conscious more often, though sometimes half-dreaming. One afternoon she asks “is this Debenhams?” and I say no, mom, you’re in hospital. “Oh, I thought this was Debenhams!” She chuckles, quietly.
She gets very breathless, so there is oxygen. One afternoon I am surprised she has asked for jelly and ice cream. She struggles to coordinate eating it with keeping her oxygen going, so I feed it to her slowly in between breaths. She looks at me and says “you should have been a nurse.”
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Three days before she ends up in hospital it’s my 30th birthday. In the weeks before I hear her and Phil conspiring over something on a visit and it turns out this was him asking her permission: my present is an engagement ring. It is beautiful, exactly what I would have chosen for myself, but I am sad we can’t celebrate together. Mom has been wiped out for a week or so – tired, breathless and struggling to get about.
She hasn’t really felt the same in herself since they took her off Methotrexate for her rheumatoid arthritis, plus we lost Dad only last March, then this. The GP has given her Furosemide but it doesn’t seem to be making much difference. She is exhausted. We have a meal booked, but she tells us to go without her, because she can’t really face it. So we do, and it’s a lovely evening, but it isn’t the same.
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They have moved her to the other bay now, where the sun comes through and you can hear the goldfinches chittering in the trees outside. We have a new routine where I go home at night to sleep, call first thing in the morning to see how she is and then Sue, my not-yet-mother-in-law, drives me to the hospital every day and stays with me, crafting or reading or watching TV in the family room.
Mom is a little more settled, brighter in herself, but there is infection to contend with because she is bed-bound, and her catheter makes her wince in discomfort. She tells off the beeping machinery beside her, tuts at the monitoring clip on her finger that wobbles about. We don’t have Big Conversations, because in my mind although things are very much not OK it seems more hopeful that she will get better, so I just sit with her and we talk about my driving lessons and nothing very much, then I let her sleep again for a while.
And repeat, and repeat, with the smell of one specific brand of hand sanitising gel that I can never unknow, now, underpinning all of it. There is a nurse who is also named Margaret, but she is a Maggie. Mom says she never liked being called that. Once she flaps her arm at me, beckoning, and when I look confused she says “I want to hold your hand” so we do, and I feel the smoothness of her swollen, arthritic fingers as she strokes my arm.
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The day we lose Dad, she drives us home from the hospital and we sit together, dazed, in between the phone calls I tell her I will make to let people know he has died. Phil leaves work early to come over and somehow we manage an evening meal, but when I say that we’ll stay with her overnight she refuses, insisting that we go home. “I’ve got to be on my own sometime,” she says.
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I call as usual first thing on Sunday morning when I get up, and ask the nurse how she’s doing and if she had a good night. This time, though, she hasn’t, and things are tricky. They’ve had a chat with her, talked about putting her on a ventilator and she’s agreed to that, so I say I’ll be there as soon as I can but they tell me she’ll be ventilated by then. We grit our teeth and Phil drives us there, neither of us quite sure what we are heading into. It is two weeks since my birthday and sixteen months since Dad died.
She is back in the grey bay when we arrive. There is another long conversation with medics, full of talk of plasma and this or that thing that could theoretically be done, but. The kind of conversation in which people who know that they are out of realistic options attempt to tell you, a confused and frantically worried fully-grown child, just enough for you to magically intuit that this is what they mean, without actually wanting to spell it out for you.
Instead of yelling JUST TELL ME IF SHE IS GOING TO DIE I try, through the thickening fog that is my brain, to ask them: are you saying you want me to agree that there is nothing more you can do? And there is shuffling and more jargon and concerned looks, and I know that there is no more to be said. All there is now is to prepare ourselves to wait.
Later in the afternoon I ask if I can go to sit with her for a while. I hold her hand as she sleeps with alien tubing snaking into her mouth, and in spite of having no idea how much of her is even present any more, I talk. I tell her that I love her, that of course I don’t want her to go, but if she has had enough I understand and I want her to know that it’s alright because we will be OK. My throat cracks as I speak but I don’t cry. I tell her that I’ll be just down the corridor and I’ll come back when it’s time, that I’ll be with her. I don’t cry.
She slips away so slowly, hour by hour. We take it in turns trying to doze, popping down every so often, coming back. Finally it is around 3am when a nurse comes to get me and tells me it’s time. We sit with her together, holding her hand, telling her we love her. The last ripples of her become fainter and fainter until the water is calm, undisturbed now, and the lines on the monitor are too. It is a peaceful, profound experience for all that it is one I never wanted. She is so still, and we sit with her a little while longer as the nurse, quiet and kind, explains what happens next.
Then the strangest thing of all: to leave behind someone that you were a part of, who you were responsible for, alone in that grey room in the care of other people for the last time. When we get into the car the first light is dawning and we drive silently towards home in the hazy rose-pink glow of a new morning. I don’t cry. Not yet.
Louise Norgate 