It’s Thursday 28 September 2023.
Let me introduce you to someone who used to wear a bowler hat to work.
My Dad…born in 1930…was a solicitor.
When we lived in Bradford for a period during my childhood, my Mum used to have the car to take me and my sister to school (remember the days of one-car families?), and my Dad used to walk to the bus stop in his bowler hat, tipping it as he passed any ladies on the way to work.
A true gentleman and a true gentle man.
Why am I telling you this?
Because I’m sat next to his bedside right now on Thursday 28 September 2023 starting to tell the story about his end of life. And I’ll probably be talking about his death by the time I finish this.
And that’s ok because it’s a journey not just for him, but also for us, his family.
The parallel between birth and death has been so striking these last 3 weeks…one labour in and one labour out.
I know not all deaths are the same…but my Dad’s story is one of old age…perhaps one we all aspire to. Yet it hasn’t been what we expected.
I don’t want this to be about what is or isn’t wrong with the NHS, because to be fair to them we’ve mostly had the nursing, care and financial support my Dad has been entitled to. And Marie Curie has provided us the family with the rest support we’ve needed to be able to keep Dad at home to die.
This is more about our experience of the actual process of dying. Not a topic we really talk about that much, and certainly not one we think about until it happens to someone close.
Naive as this may sound, I always thought dying of old age would be about gently drifting away while you were sleeping.
Maybe that’s true for some people…but not for us, so here goes…
My Dad has had prostate cancer for around 30 years…but he lived with it. In May 2022 he had a stroke, then later that year he fell and had to have a pin put in his hip. At the age of 92 at the time you can only imagine how much this affected his mobility.
To the extent that he told my Mum he prayed each night that he wouldn’t wake up the next morning. And we all know how powerful the mind can be.
Fast forward to 6th September 2023 and he spent 18 hours in A&E following a problem with his catheter.
On return from hospital his decline started immediately and he remained bed bound from that point onwards.
I spent the next 3 weeks travelling the 3 hour round trip every few days to help out with his care, as my Mum also has complex care needs. Luckily my sister lives nearby and we’ve always worked together as a team to help our parents.
A week ago his GP told us if he was having problems taking his stroke and other medication, then we didn’t have to give them to him. Which on the one hand was a relief that we didn’t have to see him struggle taking them, but it also placed a lot of stress on us wondering if we were doing the right thing withdrawing them. That one weighs really heavy.
Around 4 days ago my Dad stopped drinking anything…not that he was taking on much fluid before, but by this stage he couldn’t really communicate to us in any meaningful way, couldn’t swallow and was totally reliant on us for his care.
So there he was just lying on his hospital bed at home (yes, the NHS will supply one to you if you need it), and the waiting game began.
His noisy breathing has been the constant background noise…not gentle breathing as we’d expected, but really powerful open mouth deep breathing non-stop for 4 days. Changing only this morning to a slightly shallower one.
You see, my Dad had asked his GP last year how long he had left and was told that it was impossible to say as his heart and lungs were really healthy.
And that’s what’s keeping him alive…his heart’s still beating strong and his lungs are doing what they’re supposed to. They’re his life support machine right now even though we know Dad’s not there any longer.
It’s painful for us to watch this, but we hope he isn’t in any pain.
It’s frustrating for us knowing how much he wanted to die, yet his body won’t allow this to happen just yet.
And no one tells you how to behave when you’re sitting around a beloved’s death bed.
Do you maintain a solemn silence? We’ve tried that.
Do you have a laugh and a joke? We’ve done that too.
Do we carry on with life? Well we’ve had to, to some extent…including hoovering around him!
I’ve lost count of the number of times we’ve heard a change in his breathing and thought ‘this is it’. The false alarms are akin to Braxton Hicks contractions in labour. But this time it’s his exit to mirror his birth some 93 years ago.
And it gets to the stage where none of us want to really leave the room in case he goes while we’re not there. The guilt…yes, that’s very real.
He’d absolutely hate what’s happening right now. He’d hate what it’s doing to us. Yet he’s helpless to do anything but let nature take its course and we‘re helpless but to be players in this game of death and stay in until the end, the timing of which we have no control over.
So we’re in no man’s land. And to watch what it’s doing to my Mum is just awful.
His eyes opened this morning when he gulped for air so much that we thought his time had come (we now believe this was a mini stroke).
It wasn’t his time, but his eyes are still open and he’s still labouring away.
And even though you’ve heard about the smell of death, when you’re living in it you don’t notice it so much…but if you go out and come back in again, it’s unmistakably there. Like decay.
I can’t deny it…I feel like I’m living in some kind of vortex not knowing which way is up. Like we’re on a fairground ride but can’t get off.
Everything is on hold until ‘it’ happens. But everything also carries on at the same time.
Now I’m faced with a dilemma…I have to go home tomorrow to sort some things out…I was supposed to go 2 days ago but thought his death was imminent so I stayed. I find myself hoping he’ll pass today so I can go back without fear of not being here when the time comes.
I know it’s the quality of time we’ve spent together recently that counts and not the actual point of death, but if you had a choice, you’d choose to be there, right?
I need a break, but I‘m struggling to see the end. And I don’t want to let anybody down…
…some 4 months later, it’s January 2024, and last September feels like a lifetime ago, but yesterday at the same time. I’m sure this is normal.
We now believe Dad had another stroke mid afternoon on 28 September and his breathing got a little quieter, although still very noticeable. We also had a nurse come and dress some bed sores. I won’t lie, I’m queasy, so I chose to be facing Dad when we rolled him. The moment he rolled towards me, his breathing immediately returned to what I’d call normal. It felt like he was saying thank you…I don’t know why. And that’s why I knew I could leave that evening. The nurse gave him some morphine to help with any pain he might be feeling with the bed sores.
I said my goodbyes and told him I’d be back the next day. I just felt he had given me permission to leave.
An hour or so after getting home, my sister called to say he had passed quietly.
She’d left her iPad in his room playing an episode of Last of the Summer Wine…one of his favourite programmes years ago, and he passed when both my sister and mum were not in the room.
Rest in peace, Dad 💙
23/02/1930 – 28/09/2023
…………………………………………………………………………………
What have I learnt?
Old age can be messy and distressing.
It’s a privilege not afforded to everyone.
It’s hard being in that sandwich generation…parents still alive, children grown up and grandchildren appearing. Trying to look after both ends whilst running your own business. Juggling all the things.
No one can prepare you for having to explain to your parents how to toilet once they’re bedridden…it’s like the baby stage in reverse. Whilst we willingly do it, it’s not nice for parents to have to put this on their children. I could see it in my Dad’s eyes, hear it in his voice. The apologies for waking me up at night. Having to explain that he’s been dreaming when he thinks he is late for work some 30 years after he’s retired. Heart wrenching…and you do a lot of soul searching.
So how’s the grief been? Certainly not what I expected. My only experience up until now has been with grandparents really and there was a generational gap there that helped it not affect me so much.
But there’s been a gentleness to the grief that has come as a total surprise. I thought I’d be bawling my eyes out all the time. What I hadn’t expected was the ability to get on with life. Then just be taken by surprise. A knowing and recognition of a feeling being just there. And a tug at the heart.
I think it’s helped that Dad’s death was in old age…he hadn’t had his life cut short, so I can only imagine how incredibly tough it is for any of you who’ve had loved ones taken too soon. The heart hears you.
But here’s the thing now…
It gets me every time leaving my Mum when I visit her. I know she’s got the security of living in a managed apartment block, but I kiss her goodbye at her front door and she closes it when I walk off down the corridor. Then in my mind all I see is her in the flat on her own…alone with the memories. I think that gets to me more than the grief. Or maybe it’s part of it.
Her health is also slowly deteriorating, so we know something will come over the horizon at some point in the future.
But whatever happens, we’re prepared to do the same again and put our arms around her 🩷
With love,
Caroline xxx
If you or anyone you know is going through anything similar, my inbox is always open if you want a chat about what we were able to apply for on a practical level. There’s a lot of support out there, but it can be disjointed and knowing what there is means you can support your loved one in the best way possible. I can also put you in touch with an incredible lady whose business is set up to help you navigate your journey x
Revive Intuitive 
Leave a comment