EFTmac

I’m Not Done Yet -trigger warning.

This recent health scare has made me look at some of my life choices a little differently.

For months, the unbearable pain of witnessing Frank’s decline - and desperately wanting to make it better - had come to dominate almost every waking moment.

I had found myself fantasising about taking us both out.

Ending the misery.

Not seriously.
I didn’t have a plan.

It was more like flirting with the idea that life had become so unbearably painful that I didn’t want to be here anymore.

And the frightening thing?

I hadn’t even realised quite how bad I was feeling.

But then…

In that moment when the girl on the other end of the phone said:

“You need to go to hospital. I’m sending an ambulance for you.”

Something shifted.

Suddenly, I realised…

I DO want to live.

Isn’t it funny how terror can sometimes focus the mind? 😳

I am so blessed.

I have my three gorgeous girls.

I want to see them grow old.
I want to have fun with them.
I want to celebrate their birthdays, their successes and their achievements.

I want to be there when life is wonderful — and when it’s bloody difficult — to offer my wisdom, my love and my counsel.

They are my priority.

So…

Misery.
Self-pity.
Grief.
Guilt.
Self-recrimination.

BEGONE.

I’m not done yet.

In fact, I think I’m only just getting started.

I want to advocate for caregivers all over the world.

I want to publish my Dementia Diaries and shine a spotlight on the harsh, heartbreaking reality of caring for someone with Alzheimer’s.

I want to continue giving a voice to every who struggles to put into words what is happening in her life.

I want them to know:

You are seen.
You are heard.
You are not the only one.
Your feelings are valid.
And you are not failing.

I want healthcare professionals to understand that dementia is a whole-family diagnosis.

Families deserve more than a few pamphlets and instructions to “ring your GP if you need anything.”

And I want a seat at the table with the decision-makers who still see dementia primarily as a social care problem — and somehow expect families to simply step up, struggle on and sacrifice their own families, health and future happiness.

Frank has a terminal illness.

Alzheimer’s only goes one way.

Accepting that - rather than endlessly fighting against what I cannot change - is the only way forward for me.

It is what it is.

I’m sure the hurt won’t disappear.

Life probably won’t suddenly become easy.

But I feel as though I’ve drawn a line in the sand.

I’ve defined my own manifesto for living.

And somewhere underneath all the grief, I’ve found my purpose and passion for life again.

I know I deserve to treat myself better than I have been doing.

I’ve rediscovered my optimism.

And perhaps most importantly…

I’ve remembered that my life matters too.

That’s what a few days away has taught me.

So if you’re caring for someone you love and you recognise any of this…

I beg you:

Save yourself too.

Try to create some emotional distance between you and the person you love.

Imagine a Teflon cape around yourself, keeping their pain from sticking to you.

Or perhaps angel wings around you, protecting your peace of mind.

You can love someone deeply without carrying every ounce of their suffering inside your own body.

I’m going to practise what I preach.

Because…

I’m not done yet. ❤️

What helps YOU create that little bit of protective distance?

I’d love to hear your ideas. 💜

Attention caregivers.
If you can possibly do so please take a step back.

I had a health scare on Tuesday night. I ended up going in an ambulance to the ER

I’m now in hospital for further tests on my heart.

And despite the alarms, lights and bleeps going off all night, I woke up this morning feeling… great.

Which has come as something of a shock. 😂

Because for the first time in years, I have woken up without that familiar grief and anxiety about Frank flooding my entire system.

It feels like I’m on holiday.

😂😂😂

Just me.

In a bed.

Cup of tea.

Slice of toast.

Free.

Unencumbered.

And yes… I know I’m at a bit of a watershed moment here.

I may actually have to address my own health.

I may have to change my diet.

I may have to look after myself properly.

I may even have to develop some healthy routines.

😜😜😜

But here’s the really weird bit…

I’m actually happy to be here.

No tears.

No heart flutter.

No familiar, weary sadness.

No checking the Care App to see how Frank’s night has been.

There’s something very different about enforced distance.

I’m not choosing to be away from him.

I’m not abandoning him.

I haven’t failed him.

I’ve simply been given permission to stop.

And I think the “good girl” in me — the one who has spent years putting everybody else’s needs before her own — has finally been told:

“It’s okay, Jane. You can rest now.”

And perhaps that’s what my heart has been trying to tell me.

How weird is this?

Optimism???

Where have you been hiding?

Peacefulness???

Oh my goodness… do you realise how much I’ve missed you?

😂💜

So here we are.

Entering a brave new world.

A world where perhaps I get to be more than a wife, more than a carer, more than the person who holds everything together.

A world where I get to look after me.

And when my heart was under real stress, my only thought was:

I’m not ready to leave my three gorgeous girls.

That thought has stayed with me.

So my promise to myself is simple:

I will do everything I can to stay happy.

I will do everything I can to stay healthy.

And I will learn, finally, that taking care of myself isn’t selfish.

Because my three girls are the loves of my life.

And I’m not finished yet. ❤️

Hi folks.
I'm stepping back from this page for a while. If you've ever commented, encouraged, supported anyone on here I thank you from the bottom of my heart. Writing has given me a positive purpose over these last few years. It's lonely being a
but I'm struggling and need to pull back and rest and recover.
Good luck everyone
You're all warriors.
Jane 💜💜💜

Dementia Diaries
Sunday.

I’m having such a bloody bad day today.

I visited Frank this morning even though I really, really didn’t want to. I’ve been weeping on and off ever since.

Today I feel exhausted. Angry. Fed up with everyone and everything.

And if I’m honest, I feel a bit like I’m being a martyr.

Get off the cross, Jane. Someone else needs the wood! 🙄

I want to throw my toys out of the pram.

I’m tired of being the strong one.
Tired of feeling responsible.
Tired of missing the man I love while he’s still here.

Just… tired.

And then I read these comments on one of my previous posts.

💜 “My heart breaks for you Jane (and, as someone also in your shoes, I too exist now with tears in my eyes each and every single day). It just doesn’t get easier. Thank you for your courage in saying the things care home widows don’t share out loud. Let your heart rest a bit today… if you can. Sending thoughts of peace for you both.”

💜 “I’m exactly the same Jane. Some days I get to the door of the Care Home and my stomach just drops. It takes everything I have to walk through the door. I’m my husband’s only real visitor and it’s getting harder and harder. I will never give up on him but I feel as if I’m giving up on myself.” 💔

💜 “Your posts are so very important Jane. There’s a perception out there that once you place your loved one in a care home, life becomes so much easier for the carer. Nothing could be further from the truth. Whilst you don’t have the physical demands of the hands-on care, the emotional burden becomes so much more intense, making life harder, if anything.”

And then this one arrived.

💜 “You are my inspiration, lovely loyal lady. Every word you said today is how I felt yesterday. Waiting at the bus stop. Watching him laughing, not aware he had three bluebottles crawling on his face and neck.

The bus came and I very nearly jumped in front of it.

It’s a lonely time, walking away from the body of the person you once loved.”

That stopped me in my tracks.

Because there it is.

The thing we don’t always say out loud.

This is grief.

It’s grief when you watch someone you love sitting in front of you, but so much of the person you knew has disappeared.

It’s grief when you walk away from the Care Home and leave their body behind.

It’s grief when you get home and realise that, somehow, you’re the one who has to carry on living this strange new life.

And sometimes it is just bloody unbearable.

This is why I keep writing.

Because somewhere out there, someone else is sitting in their car outside a Care Home, trying to summon up the strength to walk through the door.

Someone else is crying at the bus stop.

Someone else is furious with the world.

Someone else is wondering who the hell they are now.

Someone else is thinking:

“I love him… but I’m so bloody tired.”

And perhaps they just need to know they aren’t the only one.

So today, I’m not going to pretend I’m okay.

I’m having a bad day.

And that’s okay too.

I see you.
I hear you.
I understand your pain.

And if today is a bad day for you too…

I’m right here. 💜💜💜

And one little reminder, because sometimes we need someone outside our own little world to listen too.

If things ever feel too much, or you feel you might not be safe with your thoughts, please don’t try to carry it on your own.

The Samaritans are there day or night, 365 days a year.

📞 116 123

You don’t have to be suicidal. You don’t have to have the right words. You can simply call and talk about whatever is getting to you.

Sometimes we just need somebody to sit beside us in the darkness for a while. 💜

Dementia Diaries
Sunday.

I’m having such a bloody bad day today.

I visited Frank this morning even though I really, really didn’t want to. I’ve been weeping on and off ever since.

Today I feel exhausted. Angry. Fed up with everyone and everything.

And if I’m honest, I feel a bit like I’m being a martyr.

Get off the cross, Jane. Someone else needs the wood! 🙄

I want to throw my toys out of the pram.

I’m tired of being the strong one.
Tired of feeling responsible.
Tired of missing the man I love while he’s still here.

Just… tired.

And then I read these comments on one of my previous posts.

💜 “My heart breaks for you Jane (and, as someone also in your shoes, I too exist now with tears in my eyes each and every single day). It just doesn’t get easier. Thank you for your courage in saying the things care home widows don’t share out loud. Let your heart rest a bit today… if you can. Sending thoughts of peace for you both.”

Dementia Diaries
Sunday.

I’m having such a bloody bad day today.

I visited Frank this morning even though I really, really didn’t want to. I’ve been weeping on and off ever since.

Today I feel exhausted. Angry. Fed up with everyone and everything.

And if I’m honest, I feel a bit like I’m being a martyr.

Get off the cross, Jane. Someone else needs the wood! 🙄

I want to throw my toys out of the pram.

I’m tired of being the strong one.
Tired of feeling responsible.
Tired of missing my man while he’s still here.

Just… tired.

And then I read these comments on one of my previous posts.

💜 “My heart breaks for you Jane (and, as someone also in your shoes, I too exist now with tears in my eyes each and every single day). It just doesn’t get easier. Thank you for your courage in saying the things care home widows don’t share out loud. Let your heart rest a bit today… if you can. Sending thoughts of peace for you both.”

💜 “I’m exactly the same Jane. Some days I get to the door of the Care Home and my stomach just drops. It takes everything I have to walk through the door. I’m my husband’s only real visitor and it’s getting harder and harder. I will never give up on him but I feel as if I’m giving up on myself.” 💔

💜 “Your posts are so very important Jane. There’s a perception out there that once you place your loved one in a care home, life becomes so much easier for the carer. Nothing could be further from the truth. Whilst you don’t have the physical demands of the hands-on care, the emotional burden becomes so much more intense, making life harder, if anything.”

And then this one arrived.

💜 “You are my inspiration, lovely loyal lady. Every word you said today is how I felt yesterday. Waiting at the bus stop. Watching him laughing, not aware he had three bluebottles crawling on his face and neck.

The bus came and I very nearly jumped in front of it.

It’s a lonely time, walking away from the body of the person you once loved.”

😳😳😳
That stopped me in my tracks.

Because there it is.

The thing we don’t always say out loud.

This is grief.

It’s grief when you watch someone you love sitting in front of you, but so much of the person you knew has disappeared.

It’s grief when you walk away from the Care Home and leave them behind.

It’s grief when you get home and realise that, somehow, you’re the one who has to carry on living this strange new life.

And sometimes it is just bloody unbearable.

This is why I keep writing.

Because somewhere out there, someone else is sitting in their car outside a Care Home, trying to summon up the strength to walk through the door.

Someone else is crying at the bus stop.

Someone else is furious with the world.

Someone else is wondering who the hell they are now.

Someone else is thinking:

“I love him… but I’m so bloody tired.”

And perhaps they just need to know they aren’t the only one.

So today, I’m not going to pretend I’m okay.

I’m having a bad day.

And that’s okay too.

I see you.
I hear you.
I understand your pain.

And if today is a bad day for you too…

I’m right here. 💜💜💜

And one little reminder, because sometimes we need someone outside our own little world to listen too.

If things ever feel too much, or you feel you might not be safe with your thoughts, please don’t try to carry it on your own.

The Samaritans are there day or night, 365 days a year.

📞 116 123

You don’t have to be suicidal. You don’t have to have the right words. You can simply call and talk about whatever is getting to you.

Sometimes we just need somebody to sit beside us in the darkness for a while. 💜

Three Good Things.
8/8/26

Dementia Diaries 💔
Friday

Today broke me.

Not metaphorically.

I mean I came home feeling as though I’d been through something violent.

Frank needed changing.

There was mess all up his back, but I couldn’t get him to the bathroom.

He became angry.

Then frightened.

Then completely out of control.

I called for help.

A young man came to help me. He was gentle. Calm. Respectful.

But Frank wasn’t having any of it.

He screamed.

He shouted.

He roared so loudly that you would have thought someone was murdering him.

He threw his Zimmer frame.

He pushed.

He fought.

And I couldn’t reach him.

I couldn’t calm him.

I couldn’t even find my husband in there.

For those few minutes, he was completely lost inside his own brain.

And we carried on.

Despite his screaming and his objections, we cleaned him.

And afterwards I’ve been asking myself…

Did we do the right thing?

Should we have stopped?

Should we have left him sitting in his own mess because he was saying no?

But then I think about what happens when someone sits in faeces.

Skin breakdown.

Pain.

Infection.

More indignity.

So what was the right thing to do?

There wasn’t a good choice.

There was only the least awful one.

And that is something I am finding increasingly difficult to accept about dementia.

We talk about care.

We talk about keeping people safe.

We talk about dignity.

But sometimes the reality is desperately undignified.

Sometimes caring for someone means doing something they don’t understand and desperately don’t want you to do.

And sometimes you have to hold your nerve while the person you love screams at you.

Today, I felt like I was the one being assaulted.

I know that sounds awful.

But my nervous system doesn’t know the difference.

My body heard the screaming.

My heart saw the terror in his face.

My brain knows he has dementia.

But my body just experienced a traumatic event.

And then…

It was over.

Frank sat in his chair.

Quiet.

And he kept saying…

“I’m sorry.”

Over and over.

“I’m sorry.”

“I’m sorry.”

“I’m sorry.”

💔

Oh Frank.

You have absolutely nothing to be sorry for.

You didn’t choose this.

You didn’t choose Alzheimer’s.

You didn’t choose confusion.

You didn’t choose fear.

You didn’t choose to become a man who can no longer understand why someone is trying to help him.

And I didn’t choose this either.

Tonight I am grieving.

Not just the man I married.

But the life we thought we were going to have.

Because there is very little quality of life left here.

His world is increasingly filled with confusion, fear, pain and indignity.

And mine is increasingly filled with helplessness, anguish and despair.

People sometimes say:

“At least he’s being cared for.”

And yes.

He is.

But I am beginning to understand that being cared for is not necessarily the same as living well.

And perhaps this is the question we need to be brave enough to ask:

When dementia takes away so much of someone’s ability to understand, communicate, choose and participate in their own life… what does quality of life actually mean?

I don’t have an answer.

Tonight I just have a broken heart.

And a husband who kept saying,

“I’m sorry.”

When really…

I’m sorry, Frank.

I’m so, so sorry.

💜