I have always promised dad that if at all possible he would end his days at home surrounded by the things he knows and with this in mind had gotten the PEACE protocol in place so that dad would be able to pass on with a level of control and dignity rather than with medical staff fighting the inevitable on his behalf.
Dad’s GP phoned me at 7.20 last Friday. He wanted to let me know that he’d seen dad and that he didn’t think there was long to go and that if family and friends want to say their goodbyes it would be better to do this sooner rather than later.
Dad’s been getting anxious and agitated in the night. For example, he called the police and ambulance service out in the very early hours of Sunday morning and they called my brother out. He phones me and everyone else at all sorts of hours in the day and night and often doesn’t speak when answered. (Eg three calls last night around 3am and 4 at a similar time the night before last). But when I do speak to him on the phone sometimes he is not so confused has says he just gets anxious.
I saw dad yesterday and there was a very clear change. He was washed and dressed and on the bed dozing. I had already decided that I would call the Community Palliative Care Team today to see if they could give dad something for the nights to calm him down, but when I phoned I was told dad had not been referred to them.
After getting advice about what to do I phoned dad’s GP and asked him for an urgent referral. He did this and also came around to check on dad. This is key to me. We, society, can’t expect medical staff who spend all their working lives treating and trying to save people help someone to die. Hospice staff do this and that’s what dad needs. At 2pm (as advised) I phoned the Community Palliative Care Team again and was relieved to be told that dad was now on the system and that Ann, one of the team would visit. However the day wasn’t empty as I had arrived while Juliana (the morning carer) was present and she came back in the afternoon and another carer in the evening. Ann, the palliative care nurse arrived just after 7pm with a box and paperwork which we went through once she’d spent some time talking to dad. But yet my abiding memory of the day was siting quietly while dad slept.
So when it came to decide on what image I should present in this project I was faced with some challenges. Do I present a happy upbeat image of dad like this below that represented one of those few seconds where he realised I was present and connected with me?
I should I focus more on the context to present a narrative based version of the day like the image below?
There were many other options but in the end I decided that the day was best represented less by a still image than by a video. Here it is. (Turn your volume up full).
Just thinking, a minute must seem like a lifetime to your dad. A poignant video Pete.
But in the moments when we talk its always about when I was very you and dad would carry me on his shoulders at the seaside 🙂
The juxtaposition of the smiling photo with the video is in fact extremely powerful.
My great aunt used to call the air ambulance out regularly when she was having panic attacks towards the end of her life. Perhaps the services are used to that sort of thing happening.
This post made me think that you must be very proud that you have enabled your father to be at home at this point.
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Sometimes I reckon dad is pulling the wool over everyone’s eyes and will carry on a while yet, and then at other times it’s like is could expire at that second: weird.
You communicate in your post how time really takes on a different dimension at this point in a family’s existence. That the usual way in which we perceive time is suddenly set aside and a very different rhythm takes its place. There is so much enormous possibility in every second that passes. And that’s what is weird perhaps.
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