Sunday, 12 August 2018

Having a parent with a disability

Recently my family reached a big milestone. The 3rd of August 2018 marked 5 years since my mum underwent surgery to remove a large brain tumour and it is on this day that she began life with a disability. So I wanted to take the time to talk about having a parent with a disability and also to talk about what it was like being a carer for some of my teenage years. 

In November 2012, my mum was diagnosed with a brain tumour after suffering from headaches and fatigue amongst other things. We were told it was benign and wouldn't grow so it was nothing to worry about, it would be monitored. The following May, another MRI scan showed the tumour had doubled in size, this is where we were told that it was growing too quick, pressing into mums brain and if not removed would kill her. Life changed on that day. Surgery was penciled in for the 3rd of August 2013 but those months between May and August dragged, mum grew iller and iller as the tumour continued to grow. She started to lose her memory, was so tired she found it hard to do things and so this is where I began to be a carer. Taking over the little things like cleaning and cooking on the days she couldn't. 

For some reason, in my head, I thought the surgery would make her magically better but that wasn't the case at all. On the 3rd of August, mum went into surgery in the National Hospital for Neurology and Neurosurgery, Queen's Square in London.  The surgery not only removed the tumour but also the auditory and the vestibular (balance) nerve on the left side which is where mums journey with a disability began. She has been left permanently deaf on the left side. The surgery turned what was once my superwoman mum into a 3-year-old, unable to walk, eat, suffering from memory loss and just about talking. The road ahead was long and I was to turn from a 16-year old into a full-time carer for the foreseeable future in the space of a week. Being a carer meant taking mum for small walks, cooking, cleaning, helping to bathe her when she was still too fragile to do it herself and just generally having to put her before myself in a time of my life where most teenagers are the most selfish. Fortunately, for the first 3 weeks after surgery, my grandparents were able to fly to England to help out but after that, it was up to me. 

We were often thrown curveballs, mum kept having falls (due to the removal of her balance nerve) and a few weeks after her surgery fell down the stairs causing an injury to her leg, she kept choking due to damage in her throat and had to undergo speech therapy. 

The mum I had before the tumour and the mum I have now are two very different people, our lives are classified as before and after. It changed us all. To this day she still suffers from memory loss which never makes for a boring conversation as you can have the same conversation 3 or 4 times and mum will not remember. Having a mum who is deaf is hard at times, it is frustrating and she is slowly losing her hearing in her right ear but we have adapted to the change, always on the lookout in shops if people talk to her as she often doesn't hear them and repeating things when necessary. Thankfully her falls have become less frequent and we know how to deal with the choking. 

Having a parent with a disability can be hard, the memory loss means that sometimes important things that are going on in my life are forgotten about or that I need to be able to think for two people, the hearing loss can mean repeating yourself 10 times which is extremely frustrating sometimes, the choking to this day fills me with a second of fear every time until I realise that it will pass like it always does. Often unanswered phone calls fill me with fear, has mum had another fall? Is she in A&E again? But this is life now and equally, I am so unbelievably proud of what my mum has achieved in these last 5 years, the strength she has shown and for taking her disability and using it to fuel a fire for change. This academic year she will begin to teach children sign language, she has shown her pupils that there is no shame in wearing hearing aids and shows that despite having a disability you are still capable of anything you put your mind too. 

I am so grateful to have "an after" with my mum. That we can continue to make great memories and whilst I am sure there are more tough waves to ride, we have ridden the worst together.


  1. Angela, I was a young carer for my mum when I was a teenager. It can be so difficult to become the parent in the family when you're still working out who you are and what you want, and I want to say you're a superstar for doing so. Thank you for writing this, and sharing an insight into your experiences as a young carer.
    I'm so happy to hear you got an 'after' and that you appreciate and treasure that.
    Have a good day,
    Jenny xx

  2. You're wonderful for looking after your mum the way that you do, I can only imagine how difficult that must be, especially as a teenager. It sounds like both you and your mum are incredibly strong women and you should be as proud of yourself as you are of her. Life can be cruel and difficult and relapses happen but it's the getting up again that shows true strength. Sending love to you and your family xxx

  3. I can't imagine having have been a carer when I was 16- I'm 19 now and still struggle to look after myself, let alone anyone else. You're so incredible and inspiring for looking after your mum and I am so glad you got an after with her and for things you've both achieved x

  4. Such a well-written post! I love reading about experiences that are different than my own.

    I must have been really difficult to have such a sudden change and it sounds like you’ve handled it well. Stay strong, the both of you. xx

  5. You are a wonderful person. Cleaning the house takes a lot of time. I think you should buy the best vacuums. It will help you move faster, so you will have more time to take care of your mother