Life After My Mother’s Stroke

A Teenage Take on How to Cope

Tashi Hansen du Toit, Pieter du Toit

• Publisher: Routledge
• Year: 2022
• Print ISBN: 9780367774981
• eBook ISBN: 9781000554724
• Topic: Psychology
• Subtopic: Cognitive Neuroscience & Neuropsychology
• Index: Psychology

Tashi Hansen du Toit was 15 years old when her mother, Karen, suffered a severe haemorrhagic stroke which left her with multiple physical and cognitive impairments. This beautifully written and poignant account tells Tashi's story from the first moments after her mother's stroke, following her and her family through the experience of her mother's hospitalisation and rehabilitation. Tashi offers a rare glimpse into the impact of her mother's stroke on her family and on her life as a teenager as she juggles the stresses and demands of family, school, and friends alongside coping with her mother's brain injury. As she describes how she is learning to cope with her unresolved grief three years on, she provides hope, perspective, and insight on how to work towards growth and acceptance despite the catastrophe of a parent's stroke.

Presenting the rarely heard adolescent perspective on parental brain injury, Tashi's moving story also features Karen's account as she comes to terms with her experience. This authentic book offers great support to others, particularly teenagers, who may be going through a similar experience. It is also valuable reading for those working in brain injury services and the education system, and for any professional or student involved in neurorehabilitation or supporting families of parents with brain injury.

Chapter 1

My mother’s stroke

DOI: 10.4324/9781003171676-1

I hear my name – Mum is calling me. When I come downstairs, I see her lying in bed: “Mum, do you want me to get you Ribena?”. She sometimes gets low blood sugar because of her diabetes, and I have learned to be quick when it comes to offering her a sugary drink. “No, it’s not low blood sugar. We need to call your dad. Something is wrong”. Her eyes are open, but as I call my dad, the left corner of her mouth starts to droop and her speech is slurred, her tongue getting caught in her teeth: “I heard a pop. I have a headache… a really bad one…”.

“Dad, there’s something wrong with Mum… I don’t think it’s her blood sugar”. My dad is still at work. He tells me he’s going to call emergency services while I stay on the line with Mum. I can hear the 999 operator in the background as my dad juggles the two calls. He tells me they will call me and he’s going to come home. He says the ambulance will be with us soon. My little sister, Léa, is watching Kung Fu Panda downstairs. I hold Mum’s hand; she seems calm, but I can sense that she is scared: “I love you Mum,” I keep saying. I tell her – I lie – that she’s going to be OK and that the ambulance will be with us soon. She manages to tell me to pack an overnight bag for her. After some minutes, someone’s at the front door. I leave Mum and rush – it’s a man in green scrubs and a car marked “Ambulance” is parked in our driveway. I bring him upstairs… the tune from Kung Fu Panda plays in the background….

“How are you feeling?” he asks. We can’t understand what she says – maybe “Not so good”. “Lift up your arms for me Karen…”. He has a big dipper tattoo on his forearm and greasy hair in a headband. The man keeps saying her name as if he’s talking to someone who is drunk or something. She tries to lift her hands but her left arm doesn’t move. He turns to me: “I’m going to call the ambulance and we’ll take her to Addenbrooke’s. It’s good you called. They’ll be here soon”. I offer him coffee, but he’s not interested.

When the doorbell rings again, I let in two paramedics – this time a woman with a ponytail and an older guy, who tells me his name is Andy. I’m vaguely aware that my little sister is watching another Kung Fu Panda episode in the living room. I take the paramedics upstairs. They take Mum’s blood pressure and blood sugars. When they’ve run their tests, I ask whether Mum’s had a stroke. “We’re not allowed to say,” says Andy. The stairway is too narrow for a stretcher, so the woman fetches what looks like a chair. They strap Mum into the chair. She starts vomiting as they try to carry the chair down the stairs. She twitches. I’ve never seen anyone have a seizure, but it reminds me of when Somba, our Tibetan terrier, had a fit – his paws were outstretched and his head lolled to one side, like a lopsided Sphinx. My dad raced him to the after-hours vet that day and as soon as he got to the vets, the dog was fine.

Somba is getting in the way, and I make an excuse for him, but greasy hair guy fusses over him. They struggle to get Mum downstairs and then she’s in the ambulance and they’re off to the hospital. Everything is quiet – back to normal. Kung Fu Panda seems endless. I tell my little sister: “Mummy has gone to hospital, but the people are taking really good care of her”.

“Is she having a baby?” she asks, her eyes still glued to her show.

“No, she’s just a little bit ill right now,” I say. I think everyday thoughts: When will Dad be home? Should I make dinner now? Mum left a cup with some coffee still in it upstairs. The bed is messed up and some ECG pads are lying around on the floor, where I leave them.

Our neighbour comes over and asks why there was an ambulance. I explain that my mum has had a stroke. She comes in and offers to look after my sister until my dad comes home. She looks worried. Inside I feel really scared. I act confident, asking her whether she wants coffee. I tell her: “Everything is probably going to be OK”, but I don’t think it will be and by her expression, neither does she. She sits with my sister and they seem lost in conversation about different kids’ shows. This is the first moment I don’t feel I need to do anything. I message my best friend:

“My mums in hospital”

“Shit. What happened? Are you okay?

Is she okay?”

“Idk.. i think she’s had a stroke- the ambulance j left”

“My dad’s coming home now he’ll be here in like 15 mins”

“Do you want me to come over?

I can look after your sister of something”

“Nah it’s okay our neighbour has come over

they’re j watching a movie lol”

A key rattles in the front door, it’s my dad. He rushes in with his folding bike, scraping it against the wall. A colleague had to bring him home because the trains were running late when I called him at work. He’s in action mode. No time for hugs.

“Pack a bag for Mum – toothbrush that kind of thing”.

As he walks through to the kitchen, I wonder what Mom will actually need – phone charger, toothbrush, underwear, clothes? Pyjamas? She was always the one who packed our stuff on camping trips and holidays. I rush upstairs – my dad seems in a hurry, so no time to waste.

“Tashi, do you want to come with me?”, my dad asks me. I can see that he’s wondering whether this is a good idea, but his colleague has offered to stay with Léa until we come back. “Sure”. Is it a good idea? Could I actually have said no? We drive to the hospital – it’s really close, but it seems to take hours to find parking. People with flowers, packages for patients… a blur. We go straight to A&E as my dad thinks that would be the most likely place that Mum would be. Everyone and everything seems to be in our way. I catch my breath as we make our way deep into the backrooms of A&E, pass all the people waiting. A plump-cheeked nurse who seems just a few years older than me tells us: “I’ll check to see which room she’s in. Just wait here”. Waiting here means sitting next to a boy and his mother; he’s about the age of my sister and he cries quietly – his mother softly whispering to him and holding him. A loud man complains about having to wait so long – he’s hurt his ribs or something. Nothing around us seems as serious as having a stroke…. The nurse tells the man to go home and take some paracetamol. He’s not happy with this: “Why don’t I need an X-ray?”. He leaves in the end after the woman with him drags him off.

Finally, a doctor comes and leads us to the inner parts of A&E. Once we get there, I’m surprised to see Mum lying on a bed with nothing much happening. I recall those posters – F.A.S.T. or something – doesn’t time matter when you’ve had a stroke? Like the nurse at the front desk, the doctor seems young too – he introduces himself again and says he’s a junior doctor. My dad tries to find out more about Mum, but he doesn’t give much. There’s no one actually doing anything to Mum and this doesn’t make much sense to me after the rush back at home to get her to the hospital.

“Hi Mum…” – I hold her hand. Her speech is slurred and her eyes open and close. She asks: “Is… Léa here?”. I tell her my little sister is at home and that she’s being looked after by Dad’s colleague. She calms down a little, but then she begins to choke. She retches and my dad rushes over. No one else seems to care much about this. There is no nurse or doctor around and my dad and I hold my mum forwards. I hold a little cardboard bowl for her to vomit into. At times it sounds as if she’s choking. My dad’s very upset and tries to put on his calm voice when he asks a nurse to come over and help. The nurse helps me as Mum keeps retching. Mum looks much worse than earlier as she says: “I love my mummy…”. She has never called my mormor (the Danish for mother’s mother) that. Dad manages to call my grandmother in Canada, but my mum is unable to talk much.

The wait is endless. Eventually, an annoyed sounding doctor with an eastern European accent asks why my mum has not yet had a scan. She seems irritated with the junior doctors who scuttle away to arrange things. Mum is taken away for a brain scan. This at least seems as if something is actually happening, instead of just letting things take their course. We sit there, surrounded by other patients and a surprising lack of urgency or activity. We’re told that it’s busy, but it doesn’t seem as if a lot is happening around us. I hear the beeping of many machines; it’s also very bright in here – nowhere for illness to hide….

They bring mum back but she’s not saying much now – she seems unconscious. The doctors talk to my dad and I listen in. I can hear what’s going on but can see that they don’t want to upset me. But when my dad goes off to the toilet, the nurses come and go. Some talk to me as if I’m an adult, others ask me questions as if I’m a twelve-year-old: “You OK honey? What’s your favourite animal? I’ve got a sticker!” – that kind of thing. Finally, the junior doctor tells us what they know:

Karen has had a severe haemorrhagic stroke in her lower hypothalamus, we are going to do surgery to drain the blood but it will take a number of hours. We want to find out what caused the stroke…. There’s something odd about this stranger calling my mother ‘Karen’.

They wheel Mum off and we leave. Both Dad and I hesitate. It feels like we should stick around indefinitely to make sure Mum doesn’t get overlooked as she did when she first arrived. What would have happened if we weren’t there to help her upright whenever she retched? As we’re walking back to the car, everything seems unreal. People eating fast food in the concourse; buying groceries at M&S. We drive home in silence – there’s nothing much to say. It’s late when we get home. My sister is wired – like she’s had too much sugar.

“Where is Mummy?”

“She’s in hospital for now,” my dad says. She accepts this as answer enough. No further questions. She must be tired. He doesn’t say that she’s going to be OK, because it’s clear to us that she won’t be for a long time. He takes her off to bed. I think this is the latest she’s ever been up. I am too tired to sleep. Outside I hear my visitor cat miaowing and I let him into the house. It’s a quick bowl of milk for him. I’m too tired to give him much attention, but it feels good to press him against me. He looks shocked when I let him out too soon for his liking.

I’m so tired as I go up to my room. I fall onto my bed and hear the padding footsteps of my dog coming to see me – maybe he can smell the cat. I wonder what he thinks is happening. How could a dog even begin to understand this kind of stuff? My phone is buzzing incessantly, “Word’s gotten out” I muse…everyone probably wants to help, wants to know if I’m “OK”. What could I say? I put my phone on airplane mode – people are an issue for tomorrow.

I try to sleep, comforted by the heavy breathing of the dog at the foot of my bed and rain on the roof. I can see the red light blinking on the incinerator at the hospital – easy to spot in this flat city. There is no comfort in knowing: This is where Mum is tonight. Just this morning, Mum had taken us to the dentist. Something which should have filled my little sister and me with dread, somehow it became fun with Mum as we sang along to the radio. She knew the songs I liked and the ones I pretended not to like anymore but still did. I have no one to sing with now. Too tired to sing anyway.

Today seems just as rushed as yesterday, but we don’t seem to get far. It’s 11 by the time we go for a walk with the dog and I’ve put my little sister’s hair in panda bunches to make her smile. Everything takes forever to do. I wonder whether we’re either too tired or too scared to set off early to the hospital. On the walk we find one stray daffodil – my dad makes a big deal of this, pointing out how odd this is for October. He’s trying to distract us. Every time Léa sees any flower, she exclaims: “We’ll give them to Mum!”. We don’t. It’s difficult to explain to her that flowers do not belong in the part of the hospital where Mum is. I wonder about that: Why don’t they? I picture nurses and doctors trying to resuscitate someone and having to fend off bouquets of flowers. No, surely that can’t be the reason? Infection risk? Mosquitoes? Allergies?

I sleep-walk out of the car park on the way to the main entrance of the hospital. Léa tugs at my hand – she makes a game of jumping onto huge concrete bollards as we walk towards the hospital. Her excitement seems out of place, but I can feel that she’s nervous underneath it all. Making the best of it. I can see that Dad wants to say something like: “Be careful!”. He doesn’t. How badly can things go wrong in comparison to Mum’s stroke? Mum always lets me climb things – trees, walls – confident that nothing will really go wrong and if it did, that I’d be able to handle it.

I show Léa a life-sized cut-out of a scary looking flu virus at the reception while my dad tries to find out where Mum is. My sister loves the virus. The whole trip to the hospital suddenly seems much more exciting to her, as if we’re going to be encountering all sorts of funny looking and essentially harmless monsters during our visit. And it really does feel like a labyrinth – the hospital. Either we’re tired or it’s been designed by someone with no sense of direction or it’s a bit of both. I once heard my parents talking about someone they knew who actually got misplaced in the same hospital on the way to an operating room and wonder if the same thing can happen to Mum. Or to us.

The intercom buzzes. We’re at the door of the NCCU. I fiddle while Dad presses the buzzer over and over – too hard. “Don’t keep pressing the button, be more patient” would be what he normally tells me if I do this. He worries about these things – don’t want to bother them, but wants to get in. My little sister distracts herself by jabbing her fingers at the staff photos on a notice board: “Boy, girl, girl, girl”. Finally, a voice chirps and we’re in. No greetings. Nurses and doctors everywhere. Surprisingly quiet really. Every single bed is full of someone; someone’s dad, someone’s mum… mostly greyer than my mum. There are wires everywhere and nurses in green fatigues waging war against death. Or something. Where is she… where is she? All the patients actually do look so similar.

There she is… she’s completely out of it. Comatose. Unaware. I’ve never seen her like this; not really. Maybe when we go camping or so I may catch sight of Mum sleeping. But she’s a light sleeper really. Maybe because she’s always had to be kind of aware of us. Maybe because she’s always had to be aware of measuring her blood sugars – comes with type one diabetes. But this is different – she seems completely unresponsive, and also fragile. I can sense my dad and sister hesitating instead of rushing to her. The nurses have to encourage us to do every next step. Is it even OK to draw chairs up to her bed? Can I take her hand in mine? It’s like we need to ask permission here: Mum seems to belong to them now.

Dad told me that it felt as if the hospital “owned” me when I was born almost two months prematurely and kept in the NICU (Neonatal Intensive Care Unit) in a “Tupperware container” (as he called the little see-through cots the babies were kept in). I’ve even seen pictures of me looking confused by all the stuff (black and white mobiles, photos of Mum and Dad) my dad kept putting up in the cot for me. I think it was my parents’ way of “owning” me and I enjoyed their stories of how the nurses kept removing most of these things and my parents then replacing them. I wonder what kind of things we can do here to “own” Mum in a place where every person and every bed can look so similar at first glance.

I take Mum’s hand and squeeze it. Still her hands, her nails. But colder and coiled with wires and blue with bruises on her wrist. “Hi Mum… we are all here”. No response. My sister asks about the tube in her mouth and the machines. Actually, there really are tubes everywhere and the rails around the bed make her seem even more fragile. There are two purple marker stripes on her forehead – they kind of annoy me, but I suppose that they probably need them to line her up for something. But she still looks like Mum. There’s a friendly, beard of a nurse, kind smiles – not too much – just right. He gives my sister a stethoscope and she can’t believe her luck – something for her doctor’s kit.

There’s a little kitchen and resting room for relatives. Léa seems delighted to find it, complete with children’s toys. It has a notice board. Someone has carefully crafted bubbles with two or three words in them. I read out loud with my sister: “Finally, please” “look after” “yourselves” “Getting enough” “rest, eating and” “drinking is” “crucial, Your” “Loved one needs” “you to be well” “coming days”. They must have left the words “in the” out, so that “coming days” sound kind of scary. I can’t help myself – my dad and I resort to humour when we’re stressed, and I wonder what would happen if I rearrange...

Table of contents

• Cover
• Half Title
• Series Page
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• List of figures
• Foreword
• 1. My mother’s stroke
• 2. We’re in this together
• 3. Anger is one letter short of danger
• 4. Identity check
• 5. That’s where the light gets in…
• 6. What in my life is consistent?
• Index