In the last week my father was taken back to the hospital for the final time and told that his life span could be counted in weeks. I made the decision to have him taken there, so that his pain levels could be brought under control. It was both the most right and the most wrong decision I have ever made in my life.
Right because it was insupportable to witness his extreme levels of pain and not be able to alleviate them. Right for him. Wrong for me.
He started to associate me with all the aspects of negative medical care he was experiencing. He was a man at the end of his life, trying desperately to control what he could and, in his eyes, I had taken his control away from him. I promised him, whilst he was being loaded into the ambulance, that it was only hospital for a short period of time – just until they could get his pain stabilized. I promised him and I meant it.
After he had been admitted my stepmother begged me to do something to keep him in for a week or so because she desperately needed respite. The hostility he displayed to me, he also displayed to her (no-one else in the family ever saw it).
My two days/nights a week wasn’t enough in this situation. I asked for a full body scan and a brain scan for secondaries and said that we needed him in the hospital for the length of those strung out tests. I tried to explain it to my father but I don’t think he understood and he certainly never forgave me for it.
Of course, those tests showed cancer almost everywhere throughout the body and it was apparent that it was just a matter of time. I had tried to set up a family meeting with the Palliative Care doctor to discuss options beforehand (in a general way, without divulging the details of his condition before he had had a chance to hear it – we strongly felt that he was the primary person in this and he should be informed first or, at the very least, at the same time as family members.)
I wanted to lay the options out there. I didn’t think any of us could cope with a prolonged nursing period. But somehow communication went wrong (their fault) and we all ended up in my father’s room, with my daughter there as well, talking about my father’s imminent demise. She didn’t need to hear that.
My father immediately said, without me having had the chance to lay other options in front of him, (and please believe that we would have honoured whatever he said but he wasn’t told of other options) that he wanted no further treatment and he wanted to go home to die. He said this twice, in a very loud harsh voice, looking around the room and fixing everybody with a gimlet eye.
Of course, the dying get to call the shots. My stepmother folded immediately and everybody else followed her lead. There was then some discussion, mainly generated by my overwhelmed beloved stepmonster, as to how the end would be. She was so obviously so very scared.
This is where I stepped up. I started asking questions; a lot of them. I got asked by the doctor whether I was a nurse because of my level of involvement: nope, just grew up with a palliative care nurse as a mother, have moderate intelligence and read a whole fucking lot.
We were basically told that nursing care was entirely on us and that the outside help would only be around for pain management. I had sort of thought that maybe in terminal situations you got a lot more care but apparently it is more like less care. I didn’t feel responsible enough to handle this!
J (stepmonster) was so overwhelmed and she had already asked me to take over the medical details, which I had been doing. I started to sort out logistics. Basically, the hospital would not discharge my father unless we had a hospital bed to put him into. Silver Chain (state home nursing service) would give him a bed but he might take a while to get into ‘the rotation’. Translation: there is an order of delivery and availability and it might take up the week after.
Not good enough. I immediately set out for a private hire company and I kissed my Dad goodbye, telling him that I would be back soon but I had to sort out a bed or he couldn’t come home. He hardened his gaze and hissed “It’s a conspiracy; I know you are deliberately trying to keep me in here to die”.
I got the bed, eventually, after hours of people phoning around and the outlay of a lot of money, but the earliest date of delivery was the next day. Once I had that date, I called the ward and they gave me the number of the transport company. Apparently, the government ambulance system doesn’t exist to transport dying people home from hospital, only the other way.
They gave me a specific company name and number that I would need to use (and I am only not mentioning it here because I am hoping the company will do the right thing). I organized and paid for, up front, an ambulance transfer from hospital to home. I re-iterated three times that a stair chair was needed for access.
When the company turned up they had no stair chair. They assured me that the stretcher would adapt to meet the situation and, rather than have any more aggression and suspicion on my father’s part towards me, I cowardly agreed to let them go ahead with the transfer.
They drove off with my father strapped into the stretcher and my stepmother with him. My sister and I gathered up his belongings and drove straight after him.
To get the background established, my father lives in a double story apartment above a boutique hotel. His bedroom is on the second floor of his dwelling, or the eighth floor of the hotel. Any material object coming in has to fit into a) the lift shaft or b) the stair well.
Numerous objects have fitted before, including my father in an ambulance stair chair. Which is why I requested one, no less than three times, in my phone call to the transport company.
Forgive me; the awful next stage of this takes fortitude to even think of, let alone write, and I need a bit more time.