23/30 and 24/30: bearing witness: on death and end of life care

Remembering my mum’s final weeks and some tentative thoughts on the Assisted Dying Bill

I’m finishing this piece off in the very early morning of Day 24. I’m also doing something I promised myself at the start of the month that I wouldn‘t do: posting a combined piece covering two days. But after writing it, I know that I need to give myself a little time off, to take a break from writing any more words today and just rest. I’ll be back tomorrow on Day 25 - the end of my month-long writing challenge is almost in sight.

Yesterday there was heavy snow and it was deeply cold, although by evening the thaw had set in. It’s raining hard now, washing away all the snow. The cold and the thaw, the rain washing everything away, matches my inner landscape in the wake of writing this piece. It was hard to write but I feel a little lighter for having done so, for having untangled my thoughts and feelings and laid them out on the page.

I want to give a content warning: this piece discusses my mum’s death and the final two months of life. There is nothing graphic, but I do touch on some of the different phases in the process of dying, focussing on my experience as a daughter watching her mother go through that process. If this isn’t for you at this time, please skip over this post.

Photo by Blair Fraser on Unsplash

I’ve written a lot about and around my mum’s death this month. I expected that I would, partly because the hinge point of the potential memoir I’d like to write is the two week period in summer 2015 when she died and I became pregnant. Partly because I suspected that once I started to write about her death, it would open some kind of inner floodgate within me and I would find it hard to stop. It feels almost foolish or self-indulgent to be writing so much about an experience that we will all go through. It’s seismic but it’s also pedestrian, ordinary. Is it a bit too navel gaze-y to be pouring so many thousands of words into writing about how my mum’s death affected me?

Something that I haven’t really written about yet is the experience of caring for Mum during her final months of life. First at home, and then in a hospice. I think I’ve been avoiding it - it feels almost too raw, too personal. I’m also not sure if it’s my story to tell - ultimately it’s Mum’s story but obviously I can’t ask her how she would feel about me writing about it. Thinking about Mum’s end of life care has also become tangled up in my mind with my many thoughts and feelings about the Terminally Ill Adults (End of Life) Bill that is currently working its way through parliament (it’s due to have its second reading on 29 November 2024).

I’ve also been avoiding attempting to write anything about the Assisted Dying Bill. Largely because it’s such a complex and emotive topic, and because I don’t think I can articulate my thoughts and feelings about it very well. Perhaps the simplest statement I can make about it is to acknowledge the complexities and potential risks of legalising assisted dying, and to say that I wish it had been an option that was available to Mum when she received her terminal diagnosis. I don’t know whether she would have chosen to end her life through it, but I would have liked her to have been able to make that choice.

Although, even if an assisted death had been a legally available option in 2015, I don’t think Mum would have been able to take it. The brain tumour that caused her death was pressing down on the language part of her brain. Over the final eighteen months of so of her life she gradually lost the ability to speak. By the time she was given a terminal diagnosis of ‘months rather than years’ to live, she couldn’t talk at all. In those final months I was also increasingly uncertain as to whether she could read or write, or ultimately how much she was able to understand of what we said to her. So I don’t know if she would have been able to give legal consent to an assisted death, even if she had wished to do so.

One thing I was very aware of over the final months and weeks of Mum’s life was her rage. Rage at the hand she had been dealt. Rage that all available medical treatments had been tried and had failed. Rage that she was going to die. Rage at everything the tumour was taking from her. Perhaps most of all rage at the loss of independence.

Dad phoned me the day Mum was given her terminal diagnosis. I caught a train the following day, leaving my husband and toddler son in Durham. Dad picked me up from the train station and we drove straight to the hospital that Mum had been admitted to. “She’s furious,” he told me, “and she’s taking it out on the nurses. They’ve put a black mark against her name”. I didn’t know how seriously to take him. It didn’t sound like Mum, who was always polite to cashiers and waitresses. But I could also imagine that being told you were going to die would make you feel very angry. 

When we arrived on the ward I found out that one cause of Mum’s rage was the fact that the nurses had raised the barriers on her hospital bed. She had got out of bed in the middle of the night to go to the toilet, and had fallen and not been able to get up. They had raised the barriers to stop it from happening again. So now Mum - who was unable to speak by that point - had to press the buzzer to call a nurse when she needed to go to the toilet. It must have felt like having to ask permission, but being unable to do so. The loss of her much prized  independence, the infantilising nature of having to be helped to the toilet, explained a lot of her anger.

Mum was discharged from hospital that day and we brought her home. They insisted that she used a wheelchair to travel between the ward and our waiting car. She made a deeply frustrated noise but acquiesced, content to put up with the indignity if it meant she was able to leave. In the car park, helping her transition from the wheelchair to the car seat, I realised for the first time how much the tumour was now taking from her physically. Her feet didn’t seem able to fully take her weight, her balance was off and she leaned into me, gripping my arm so tight that it bruised.

The tumour continued to take and take. Over the next two months, Mum’s world steadily shrunk: from the house and garden to just the house; from the house to just downstairs; from downstairs to just the front room; into a hospital bed; into a hospice; into unconsciousness; into death. 

It is the hardest thing I have ever done, watching my strong, independent, clever, loving mum slowly disappear within a body that was no longer fully within her control. After a certain point, maybe a month after her terminal diagnosis, I found myself more and more wishing that she would die. It felt so wrong, so cruel and twisted to be almost actively hoping for her death. But I knew - we all knew - that she wasn’t going to recover, that there was only one way this was going to end. 

It felt equally cruel to her, to me, to all of us to prolong the experience. To let the tumour keep taking and taking from her. What were the moral, spiritual or even emotional reasons for prolonging her life at this point? Because I couldn’t see them. Wouldn’t it be better if she could choose the time she would die? Then we could all make sure that we were there, say our goodbyes properly. Let her know that we loved her so much, that we would be ok, that she could let go whenever she was ready.

Her death certificate lists the brain tumour as the primary cause of death. Living through it, I felt like the primary cause of death was the withdrawal of food and water. This is part of the natural process of dying, of the body starting to shut down: the person becomes increasingly drowsy, spends more time sleeping, doesn’t want to eat or drink. After she moved to the hospice, for the final two weeks of her life, Mum also had painkillers delivered 24 hours a day via a syringe driver, which also made her sleepy. 

I am mostly able to convince myself that she wasn’t in any pain, that she died peacefully, but the not knowing for sure eats me up. There were only two months between her terminal diagnosis and her death, but it felt like a long-drawn out, protracted decline. We all knew the final destination. After a certain point it felt unutterably cruel that Mum had to continue to live through it - the pain, the loss of independence, the indignity and rage that she clearly felt about it all. It felt unutterably cruel that there was nothing we could do to end her suffering. 

All we, and the doctors and nurses, could do was to make her comfortable - or as comfortable as possible. To be with her. To let her know how much we loved her. To bear witness.

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