THIS POST CONTAINS THE FOLLOWING (BUT NOT LIMITED TO) TRIGGERS;
- END OF LIFE CARE
- HOSPITAL VISITS
I’m going to tell you a bit about my experience of end of life care. There a few reasons I do this but namely;
1) It's cathartic, a lot of people assume you wouldn't want to talk about those really painful memories but I always have, and I think it's really important that we are able to. But, the person hearing has to be safe too, that's important.
2) I had no idea what to expect and I really wanted information, I was desperate for it. I googled and searched and pleaded for answers, I just wanted someone to tell me, what to expect.
My Mum had lung cancer. Throughout her illness I thought she was courageous and brave and in many ways she was, but she was also terrified. She said of two things; pain and indignity.
The oncologists didn’t expect her to live long and although they thought chemotherapy might prolong life, it would reduce the quality and Mum wasn’t up for that. So, she went her own way with alternative therapy. (More on that in another blog.) As a result she had little to no medical attention or intervention, and preferred a steady mix of hope and denial to keep her sane. This is a very fine line, and I completely empathise with the denial route, the problem is someone has to know what is happening, especially when there are practicalities that will take time to organise.
December 2016 Mum could barely breathe and she hadn’t left the house in 2 months - she hadn’t let on the severity of the situation until I went and saw her, and it was then I accepted (decided) she needed medical intervention. She was admitted to hospital for a chest drain but upon arrival went through lots of tests, none of which she wanted to know the results of.
But I did, I had already decided I was going to care for for her and I needed facts, the Doctor agreed to tell me. The cancer had spread to both lungs and her stomach, the tumours had displaced several of her organs and her liver was sticking out of her back and her lung had collapsed, that was why she couldn’t breath, she weighed about 6 stone. The only thing they were able to offer was pain relief and oxygen. She was in hospital for 10 days waiting for portable oxygen and then we arranged a private ambulance to bring her from the hospital in Cornwall to my home in Bristol.
We made up the spare room for her and she stayed there for 2 weeks. When a local Doctor came for a home visit, I asked him to perhaps find a way to suggest to her that her lung had collapsed, I didn’t want the burden of this information alone, but she didn’t want to know. He started to talk to me, away from Mum, about end of life care, no one else had said those words until now. I phoned my Dad, and we agreed that I should bring her home to Cornwall. I left my then partner, now husband (we survived) in Bristol and took her home, for the last time.
Mum refused to talk about anything to do with death, she would not sign a DNR, she did not write a will, there was no way I was going to bring up her funeral. She wanted to get through each day, that was it, and I made it my purpose to make her as comfortable as possible, she died March 11th, 2 months later.
2 months of a small, at times beautiful, but mostly horrifyingly lonely and terrifying existence that was all leading to one thing, the only relief that could come, the passing of My Mum.
People will ask you if it’s relief when someone dies, the truth is in some ways, it is, but only when it feels like every other option has been exhausted. I had perhaps come to a stage of acceptance that Mum was going to die, but nothing prepares you for it actually happening. And overnight you go from a carer, to someone who is now grieving, and there is no manual, nothing can prepare you for the complicated, confusing and ongoing process that it is.
But they have died, you have not. And you get a choice, you either heal and find a way to grow around the grief or you die with them. I knew which choice I was going to make, I just had no idea how hard it would be or how to do it.