End of life care and the lessons I learned.

My sister called; she hardly ever calls but I didn’t hear it as my phone had gone into ‘do not disturb’ mode.? The next day, she called again, but I was wrapped up in work, so I missed it.? I called back, no answer…she’s probably busy with work like me.? Next day, message from my younger brother “mums in hospital, double brain bleed…next 48 hours are critical”.

The next 48 hours seem to grind by, slowly.? Anxiety as the phone rings, relief as I hear “mum had a good night, stable and chatting”.

The next day, Sunday 3rd November, I try to take my mind off things by driving 50 miles…to buy a sharpie pen, weird.? Just about to drive back home, phone rings “mums had a bad turn, the neurosurgeon has ruled out operating to relieve the pressure on her brain due to risk factors connected to mum’s mechanical heart valve and besides her brain has been so damaged by the swelling that her quality of life, and life expectancy, IF she survived would be extremely low, she’s been placed on end-of-life care”.

It's at this point I started to learn, very quickly, just what “end of life care” looks like.? I hope by sharing my “lessons learned” here, they will help someone else who may, unfortunately, find themselves in a similar situation.

Lesson 1: End-of-life care starts immediately.

The moment the decision was made to proceed with end-of-life care, Mum was immediately moved from the ward to a single occupancy side room.? Her patient board was marked “NBM” (nil by mouth) and the drip providing fluid was disconnected.? The only thing mum would ingest now would be morphine, delivered through a mechanical syringe drive, extra morphine if we noticed mum was experiencing elevated discomfort and something to help her rest if she became anxious or agitated.? This lesson was particularly hard for me, as I was still trying to get back to the UK to be with her, and nobody could tell me how long mum had left.

Lesson 2: Don’t analyse every movement.

By the time I had arrived at the hospital, mum had been on end-of-life care for almost 24 hours.? For the next 24 hours, I found myself analysing every movement she made.? Every breath mum took I asked myself was it stronger? weaker? was there a longer pause between each breath than last time?? Over the coming hours and days, mum was in various states of consciousness, opening her eyes, trying to sit up and even exchanging a few words.? This was extremely difficult to process, as it had not been made clear to me that this could occur.? I just assumed that mum would never again open her eyes, let alone try to sit up and have a chat.

Lesson 3:? You will question yourself.

At those moments when mum was showing signs of “recovery”, I found myself asking if the correct decision had been made.? My siblings also expressed that they were asking themselves the same question.? We simply couldn’t correlate between the term “end-of-life care” and what mum was doing.? It took repeated reassurance from the medical professionals that there really was nothing more they could do for mum and that, what we were witnessing, is considered a normal part of the dying process.

Lesson 4: You don’t get to choose the timing of passing.

When mum was first placed on end-of-life care, my mind was overwhelmed with thoughts of how long she had left.? I automatically assumed mum would pass within hours, but she didn’t.? Another 24 hours passed by, and mum was still “fighting”.? At this point, mum had gone around 3 days without any food or fluids.? My mind drifted back to all the “survival” books I’ve read over the years, and particularly how quickly the body starts to shut down without fluid, surely mums body couldn’t take much more punishment.? Another 24 hours, mum still not giving up.? At this point, we requested mum be evaluated for her suitability to be moved from the hospital to her bungalow.? She had, in those moments of lucidity, articulated that she didn’t want to be in the hospital.? The medical team gave assurance mum was strong enough to make the journey and the rapid care plan was activated.? 96 hours after mum had been placed on end-of-life care, she was at home, which would be her final resting place.? Not only had mum fought for the last 96 hours, but she would also go on to fight for another 72.? It wasn’t until Sunday 10th November, almost to the minute that my brother had told me mum was going on to end-of-life care, that she passed away.

Lesson 5: It’s true, they really will hear you.

I had many chats with mum in her final days, chatting about what was, what is and what I hope would be.? During every interaction, mum reacted, even when I thought she was completely unconscious.? A squeeze of the hand, a nod of the head, a twitch of the lips or the slight raising of an eyebrow…mum did them all.? Use this time to say everything you want to say, play their favourite music, read them their favourite book.? Your loved one will hear.

Lesson 6: Time stands still, then it doesn’t.

Mums end-of-life care lasted a week, and it is only as I sit here typing this almost a week after her passing, that I have regained a sense of time, and time has resumed to “normal” speed.? You know how people often say, “where has the week gone”? well that is where I’m at now, but the week that mum was on end-of-life care, time seemed to stand still.? It was as if the universe was making sure we got to cherish every single moment possible.

Lesson 7: Ask questions.

Those who know me well, know that I am fond of the phrase “no question is a dumb question”, and this approach helped me understand what was happening during mum’s end-of-life care.? The medical team were fantastic and always on hand to answer our questions.? So, if you want to know what the nurse is doing, what the medicine is for, is this or that normal…then just ask, someone always knows.

Leson 8: Be kind to yourself and don’t suffer in silence.

The experience of end-of-life care has been physically and emotionally draining.? From not wanting to leave mums side, for fear of not being with her the moment she passed to the release of pent-up grief when mum finally left this world.? During this time, it is important to get as much rest as you can, stay hydrated and try to eat regularly.? For me personally, food became tasteless, and I consumed copious amounts of caffeine, which left me feeling weak.? Even now, almost a week later, I still don’t feel like I’ve fully regained my appetite, and I am almost forcing myself to eat.? If I knew, I would have ensured I took small but regular intakes of food with constant sips of water.? Less is more, and there is a need for a constant energy source during the process.

Talk to those around you such as family, friends and the medical staff.? My siblings and I felt different emotions at different times, and we quickly recognised this.? This enabled us to be ready to support each other as our emotions were being processed.

The Final Lesson: The journey through end-of-life care for my mum was the most challenging, emotional, and eye-opening experiences of my life. In sharing my lessons learned, I hope to provide some comfort and guidance to others facing similar circumstances.

I quickly learned that end-of-life care begins the moment the decision is made, and it can unfold in unexpected ways. You’ll question everything, from your loved one’s responses to whether the right decision was made. Time will feel like it stands still, and you’ll witness moments of lucidity that can leave you feeling confused, as if there’s still hope. But what I came to realise is that this process is normal, even if it’s not what you expected.

I learned the importance of self-care. It’s easy to forget your own needs while caring for someone else, but taking the time to rest, eat, and drink—small though it may seem—is essential. I also learned that you don’t have to go through this alone. Seek support from your family, friends, and even medical staff. Recognise that grief manifests differently for everyone, and by supporting each other, we can weather the storm together.

End-of-life care is a deeply personal journey, and there’s no right or wrong way to experience it. But I hope that by sharing my story and these lessons, others can feel a little more prepared and a little less alone when facing the final chapter of a loved one’s life.