Hi there, I’m so sorry to read this and I’m sending you strength at this time. Though it was a different cancer, I supported my dad as he was dying 2 years ago and found it required some preparation and thought as it approached. Please know that this was only my experience and I fully appreciate how individual this may be. We did have some Marie Curie support (district/palliative care nurses can make referrals, I imagine a GP can as well). Someone could call Marie Curie to check the process. I asked them to tell me what would happen as my dad deteriorated, what would it look like, what was needed. I was acutely aware that I would be the one responsible for knowing when to call family.
I wondered how I’d know when to stop him trying to get out of bed, or how that deterioration might present. I wondered about losing his swallow, about breathing changes, knowing whether a sleep was just that or something deeper, when I’d know to give, or stop, food and water etc. I just wanted to do the very best I could for a man I idolised.
As it progressed, each stage fell into place in a way that wasn’t scary and was actually really clear. One day my dad tried to get up, I placed a hand on him and suggested we rest that day. He looked right into me and I said that it was just for today and we’d see what tomo would bring. He had a tiny bit of breakfast that day, then his morphine via mouth. Within 2 hrs he needed more which I dispensed via mouth syringe again and knew straight away that, in those 2 hrs, he had lost the ability to swallow. He never ate or drank after that. I immediately spoke to district nurse and asked straight out for a syringe driver. This was inserted within 3 hrs and took most of the pain relief responsibility away from me.
My dad then drifted in and out of sleep for 2 days. It then was clear it was no longer sleep but something deeper. I had called my sisters home the previous day and he knew we were all there. I’ll be honest and tell you he didn’t die for another 6 days. I was repeatedly told that length of time for active dying is not common. For most of it, my dad was peaceful. There were times it was clear that pain was reaching even the deep place he was in and I never hesitated to get help. He deserved that.
We continued to keep my dad clean, I did mouth care, we talked to him, we made sure each of us had time with him, we tried to be kind to each other while we negotiated the bedside and the caring. There were moments we all, silently, begged for that last breath to come. Moments we felt utterly alone, detached, like it wasn’t happening. It was also the greatest privilege of my life.
The breathing changes came a day before he died. It became very mechanical sounding, and later became quieter. His colour changed, he was colder, he was less there. Thr change was clear. We then shared the last mins of his life and watched his breathing lessen, not loudly nor dramatically. There was one last deep breath, his chest inflated, deflated and laid flat. No drama, no mistaking it. He was gone and visibly at peace. There was nothing scary in the moment.
I wish your loved one, you and all those else going through this, peace, moments of calm, strength and comfort. May they know they are loved
Please forgive me for the length of reply, for the detail. I know back then I could have used the reassurance that we all do our best at this time and it’s enough.