Ready to Die - Until Not
I thought I’d got it sorted - I’m a nurse. I’ve got LPA’s. I chat about dying. I’ve a signed DNA. There’ll soon by an ‘End of Life’ Bill. Goodness - how wrong I was!
Theme: The Beauty
Quick Look:
Loving and caring carry huge responsibility and in amongst the exhausting and unpredictable it’s full of surprises.
Plans vs. reality - no checklist could prepare me for the twists, turns, or change of mind.
A little freedom from guilt - imagining a ‘Non-Guilt Declaration’ to help us feel stronger.
The Weight of Caring
Caring for anyone brings love, grief, unexpected connections, exhaustion, surprises - and all too often that complicated emotion: guilt.
The Burden of Responsibility
It doesn’t matter what documents we have or what someone has signed, significant responsibility is placed on family members. Careful consideration and communication is essential and I wonder if a ‘Non-Guilt Declaration’ might actually be a nice idea. Or something similar that encourages talking and sharing.
Guilt in all Directions
I feel guilt for not doing enough and guilt for doing too much - and for turning my husband’s life upside down. There’s my guilt over rushed decisions and guilt over delayed ones. Then there’s the guilt around hoping Milly will die before we ‘lose her’ completely. Linked to this is the guilt wrapped up in my thoughts about avoiding hospital admissions because I know the distress they bring for someone with dementia - not least the risk of Milly ending up in corridor care, something we’ve already experienced.
Guess Work and Gut Feelings
Now that Milly can no longer express her wishes clearly, every decision feels like a test. This treatment? That treatment? No treatment? Dementia has pushed me into being an interpreter, advocate, comforter, and decision-maker - roles I don’t always feel qualified for.
Guilt is everywhere. Nursing background or not. Conversations or not. Prepared or not.
The Idea of Dying Plans
My experience of death, as a nurse, has not been negative and dying has never been something that frightens me. Talking about it has always felt natural.
For a long time, I thought creating a dying plan - like a birth plan -was the way forward for all of us. Building our knowledge, learning about choices, considering preferences, reducing surprises. I felt it had to be better than pretending death won’t happen.
I believed a DNR (Do Not Resuscitate order) and some sort of assisted dying legislation would take away some of the more difficult decisions and fears.
I thought I had everything in hand. Until my father’s death and my mother’s dementia. They made me realise - dying really isn’t that simple.
When Plans Meet Real Life
My father and I had talked about dying plans. We’d always chatted easily, and he often said what many say: “I’d hate to be helpless and I don’t want to be a burden, so please let nature take its course.”
In his mid-eighties he became extremely ill with COVID and stopped all his medication in hospital. He’d had a rotten experience, as so many did, and because we could see him for less than an hour a day, we couldn’t help him drink or eat enough, let alone feel loved. When he begged to be free from pain and refused further treatment, it made sense to me. This was the father I knew, and I have to confess I was relieved. I wanted to let him go. His life was already difficult with multiple chronic conditions and frequent hospital stays to adjust heart medicines - and I knew caring for both him and my mother, who had early dementia, would be overwhelming.
We were very lucky to get him home for palliative care - safe, comfortable, ready to die.
Surprises Around every Corner
Then, unexpectedly and after he’d been home for a few weeks and received care that I managed, he asked to start treatment again.
I panicked. He was still very poorly and I was scared - for him, for my mother, and for myself. I reminded him life would be hard, that as Milly was ill I’d have little time for him, and he might be lonely in a care home. And he just smiled: “The odd visit from one of the grandchildren and seeing their smiles, that will be worth it - plus a few glasses of wine!”
He restarted a few medications, gently reintroduced. And about ten days later, he suffered a fatal heart attack - likely because he hadn’t been on his heart medicines for some time.
When Conversations Matter More Than Plans
When he died I felt guilty - should I have let him stop his medication in hospital when he was confused and unwell? Should I have fought harder? I could feel guilt taking hold.
But then all our talking and honesty held me steady. We’d spoken many times about the fact that I might find decisions difficult, that I could make the wrong choice, or choose the easier option for everyone involved.
I was grateful we’d talked. In moments of deep grief I could return to all those conversations and know he would understand my decisions. Fiver years on, I still think have moments of strong sadness and then I remember our chats and, I know he’d smile and reassure me about my thoughts.
When Talking About it is Too Difficult
Milly, on the other hand, has never felt comfortable talking about dying. She called me and my father morbid whenever the subject came up.
She’s always said she wants to go on forever: “I’m scared of missing something!” Her commitment to living can’t be questioned - osteoporosis and multiple falls, serious injuries, long hospital stays, cancer, lung disease - and here she is, over 90 and going strong. And of course, in her words, she doesn’t have dementia - just “an old and lazy brain”!
But there is one conversation we’ve had many times. Because I understand the difficulties people face at the end of life, I’ve told Milly that I fear I might make the wrong choice or let her down - that I might choose the easier option for me. Her response has always been the same: she understood, and she knows, I will do my best.
Real Life - and Real Death - Are Rarely Simple
As a nurse, I saw this again and again. As a daughter, I lived it.
A DNR might stop resuscitation, but it doesn’t stop doubt. And with dementia, everything is even less predictable. One week Milly seems stable, the next she’s terribly confused, and then suddenly she’s herself again. How do you plan for that?
The challenges at the end of life often involve infections, antibiotics, hospital admissions, feeding and fluids. Questions about introducing, continuing, or stopping treatment. Managing pain. Discussing what comfort really means.
In the moment, our choices depend on:
how our loved one seems right now
whether something might be reversible
our hopes and fears
instincts
what feels less stressful in the long term
how much we panic
We can’t predict what’s ‘best’ at the end. But we can prepare our loved ones with understanding, reassurance, and compassion. And that’s where the Non-Guilt Declaration comes in - a way to help families breathe a little easier when the hardest decisions arrive.
So What Is My Non-Guilt Declaration idea?
A DNR tells doctors what not to do. A Non-Guilt Declaration tells families: It’s okay. You don’t have to carry the guilt. Be kind to yourself and choose peace.
A Non-Guilt Declaration doesn’t tell anyone what decisions to make. It’s NOT a legal form. It’s not a checklist. Instead, it’s a shared understanding - a message of reassurance: “I can’t know the choices you will face at the end of my life, but I want you to know there is no perfect decision. There is only your love, your instincts, and your best judgment - and I trust you.”
I’m hoping it might also encourage less frightening conversations about dying, and more useful chats about our fears, wishes, comforts and practicalities. So this would be how I would talk about things personally, with my daughters:
Fears - I know I’m more frightened of pain than I am of being alone. I’m pretty sure that social interactions will matter less to me than being pain free. Being in pain and alone is my worst nightmare.
Wishes - for me, I want my daughters never to feel obliged to visit or to feel guilty if they don’t see me. If I live long enough for them to be a grandmother - seems highly unlikely but, who knows?! - I’d far rather they enjoy time with the next generation and look after their own health - not mine. I’ve had my life. But hey, never say never - as I learned from my dear father! But make sure I have plenty of pain killers!
Comfort -a big one for me and I hope my need to be pain free doesn’t create too much hassle! Here I go again, pain is clearly top of my agenda!
Practicalities - if I ever need long-term support, I want very few possessions - only things that are important to someone in the family. And if I hang on to ‘stuff’ and no one wants my special rabbit sculpture or favourite painting - no problem! As for after I’m gone - if a funeral helps with my family’s grief, fine. Otherwise, I wouldn’t bother. Cremate me, scatter me anywhere you like - I quite like the idea of being in a pot in the garden.
A Small Find
After having the idea of a Non-Guilt Declaration, I talked with Milly about fears, wishes, comforts, and practicalities again. We spoke about being in hospital, about what helps us cope in frightening environments and what matters most. I told her about feeling guilty, always thinking I could do more and she said she trusted me. Signing a form is too challenging for her these days but I know, in the past, she would have very happily signed a Non-Guilt Declaration if I said it would help me.
Then I thought about her funeral. Milly has always shared her fear of an empty church or crematorium. Every time she’s been to a funeral she’s commented on her own: “There’ll be no-one at mine. Most of my friends will have died, or they’ll be too old to travel.”
We’ve always laughed that I’d hire a coach and rent-a-crowd and she’s consistently added her dream: a big brass band playing the Royal Artillery Slow March. I’ve completely ignored this, and she’d half-smile, knowing it wouldn’t happen.
But caring for Milly at home has brought a surprising gift - another find! I feel more connected to her than I ever was before. And where once I never considered the idea of a band - absolutely not! - think I might just organise it.