I don’t profess to be an expert in caring. I can’t pretend I know what it is like to care for someone year in year out with a life threatening condition, learning needs or extreme mental health. My story of caring is very specific to a terminal diagnosis with a rapid decline. So what I say next is not meant to be an assumption of other people’s journeys, it is simply ‘In my words.’
By the time we knew why Mum had been feeling so poorly the cancer had already metastasised and we were straight into palliative care. You don’t have time in this situation to plan ahead, to think about what you might need to do, what you need to find out. You are just racing up one giant learning curve, trying to cling on and do the best you can. You pray that you don’t get anything wrong or forget some vital information. Because the one thing you do know, the one thing you are certain of is that you don’t have the luxury of time.
I remember one occasion visiting my Mum in hospital and she was taken off for her one and only shot of radiotherapy. I had my five-week-old daughter with me and we weren’t allowed near the radiotherapy area. It seemed to take forever and I then got lost trying to find Mum afterwards. By the time I got there most of the afternoon was gone and I knew I’d have to get back for my two year old. I remember crying and saying it had been a waste of a visit. My Mum, as she always did, tried to reassure me but I was inconsolable. What I had meant but couldn’t say at that point, was that it felt a waste because I knew I had such little time left with her.
My Mum was actually at home for most of her short and devastating illness and for this I will always be grateful. It meant I could stay with her all of the time, day and night. We actually had some lovely times and laughs and very important conversations for which I will always be thankful. It was a whirl of carers and doctors and nurses; all of who were brilliant. Caring for someone at the end of life can mean a lot of support from services; we didn’t have to fight for funding, it was a given that Mum would be receiving continuing health care and she was on the gold standard framework at the doctors surgery. Mum’s GP in particular helped us to navigate the most difficult of conversations around Mum’s impending death, enabling us to talk openly and try and accept what was happening.
Caring for a loved one at the end of their life can feel as though you can’t keep up. As though you are on a train that is racing towards the longest tunnel and you cannot stop it. You cannot get off.
The decline with my Mum was so rapid; the most startling example of this was her mobility; she went from walking unaided to being paralysed from the waist down within the space of a few days. In this situation you simply cannot manage it alone. It is out of your control and we had to accept that we needed professional help. This can be hard when you want to do it all yourself. But seeing someone you love in so much pain is undoubtedly harder.
Caring for Mum at home it felt as though there weren’t enough hours in the day and yet I could never remember what I had really done or achieved. Ironically it was not that dissimilar to caring for a newborn, which I was also doing at that time. New life was certainly a lift and my Mum said to me that this was what would get me through because babies and small children need you in such a basic way that you have to keep going. She knew what she was talking about having been widowed at 39 with three young children. I remember talking about this with my Mum being her calm, philosophical self and all I could think was, only my Mum could make me actually feel better about the fact that she was dying and what would I do when she wasn’t here to make me feel better any more?
Caring for someone who is at the end of life can feel like a window into the unknown. It can mean seeing or hearing things, which are distressing and extreme. It shows you what pain really is. At times scary and very personal, it teaches you to appreciate the big and little things all at the same time. Holding that person’s hand takes on a whole new meaning.
Caring for a loved one at the end of life teaches you skills and gives you valuable experience whether you want it or not. Caring for my Mum taught me how to care for her mum. My Gran died this summer aged 96 after a long and difficult decline, much of which I was able to navigate and manage due to all I had learnt four years before.
Even if it doesn’t always feel like it, caring for someone at the end of his or her life is a real privilege. Caring for my Mum and knowing my Mum, being mothered by my Mum was the real privilege and one that will always stay with me. What I gave to her at the end is only ever going to be a fraction of all that she gave to me.
Caring for and losing my Mum has taught me how to have resilience in the face of true heartbreak. Resilience, which I learnt from her. And that sort of resilience is a life skill worth having.