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My Life as a Carer - Astrid Hilne

Taking on a job caring for young disabled people, I see first-hand the devotion and love of adult carers. I cannot relate. I don’t feel that way towards my mother. I just do it. I look after her.

The Reality of Caring

My mother has severe scoliosis, reduced lung capacity, a weak heart and psoriasis. She is housebound. I manage her finances, including all her benefits. I clean and see to any repairs needed in the family house where we live together. I do the shopping. I wipe and cream in between her legs, where she has broken skin, twice a day. I do the housework. I prepare her food and help her get dressed. I manage her medication and any GP, dentist or hospital visits. I empty her commode, several times a day. I deal with a lot of poo – she has problems with her bowels, due to severe piles. I have to remind her every day, especially at night, that when they hurt (because she spends her days sitting on the sofa) it doesn’t mean she needs to empty bowels, in fact the opposite. She argues with me and then argues with herself about the pain she is feeling and the sense of urgency and eventually relents and gets into bed.

I tuck my mum in bed, put the chain on the door, reassure her that I’ve put the chain on the door and say good-night. At this point she will ask me questions about my son, who is 16:  ‘is he asleep yet’? Or my niece, who is 23 and lives with us: ‘is she home yet’? I try to reassure her and ask her to please relax and let me go upstairs and get ready for bed. Her bed, commode and everything she needs is in our former living room. Then I have to clean the crumbs, from her daily munching, on the sofa and the floor and empty the bins, to deter any mice that might come looking for sustenance, in the night.

Eventually, I’m upstairs. I need to relax and go to sleep quickly, so that I get enough sleep. Deep breathing and meditation work best but sometimes I watch a bit of Netflix. I exercise -  power walking - and I eat healthily but I’m always craving sleep. I haven’t had enough sleep since I became my mum’s main carer, six years ago.

Right now, she is making moaning noises because she wants her breakfast. She has just cleaned her teeth. The other day she told me that one of her teeth feels like it’s going to break. I know that she needs to wait to eat, after cleaning, to protect her teeth. She doesn’t understand and hates the break in her routine.

Maintaining Memories

I have this fear, in the back of my mind, that one day, she will either physically or mentally be so weak that she cannot be left alone.  I encourage her to walk around the house or move her legs up and down when she is sitting. I talk to her, when I find a moment. She likes watching TV quiz shows, so it’s fun to interact with her about these.  She keeps in touch with family and neighbours, on the phone or through visits but in the main, her childhood or work friends have either died or lost touch with her, due to Covid.

I remind her about people, memories, her brothers (who are dead) when she asks and when she doesn’t ask. I show her photos - not as much as I would like to because I’m combating tiredness or I have something to do in the house or because I am going to work. I want to write down her memories and her stories, while I still remember them.

Caring at Work

Since the pandemic, work has been mainly at Challengers, a charity that provides out of school provision for disabled children and teenagers. I care for participants and manage creative playful learning activities. The latter comes easily to me, with a background in the arts and education; the former doesn’t, despite caring for my mum, as it comes with added responsibility and accountability. Challengers adhere to the social model of disability which recognises that the experience of disability is impacted by your social and environmental conditions.

I found all the information and paperwork required to keep these children safe was overwhelming to begin with. A year later, less so. There’s not much crossover between caring for my mother and caring for these young people, except, there is a lot of toileting and changing of nappies. Although, I’ve learned how to move people safely and that’s helped me with my mum.

During the first lockdown, I was asked to write about caring for my mum. I hope it helps others. The best help for me is the kind I don’t ask for, like an offer of respite from a family member or kind words from a doctor during a hospital visit. Any help is a good thing. 

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