Journey of hell

Don’t know really where to start; but here goes. My Mum had a fall on 6th December banging her head, my parents live 4 hours away from me. After the fall, my parents phoned for an ambulance and were told ‘it’s a long wait’ - my parents waited all night, on 7th December an ambulance attended and established that Mum was taking Rivaroxaban, had had a fall to the back of her head on a concrete driveway and then told my parents there was a wait to ‘offload into ED, then a long wait in ED’ given this information my parents decided not ‘to bother’ so off the ambulance went. The following morning, 7th December : my Mum having vomited in the night and now had slurred speech and a severe headache phoned her GP - they immediately called for an ambulance that arrived quickly and took Mum to ED. A CT scan showed a large subdural bleed: On the 7th December following all of this my parents then decided I should know what had happened; nearly 48 hours after my Mum’s initial fall (I’m so cross about this but can’t do anything to change that now, but I’m furious) . I live 4 hours away, am an only child and have begged my parents to move to me so I can be there for them, my Mum would have moved in a shot but my Dad refused. Besides that; following the CT scan in ED, my Mum was on a trolley in the corridor of ED for 38 hours. My eldest son and I drove down 5am Saturday 9th and Mum was not transferred to AMU until Sunday 10th December. I returned on Monday 11th as both myself and my son had work. On Sunday 10th my Mum was able to fully comprehend and talk normally and appeared to be doing well albeit early days. On the Tuesday 12th Mum’s speech had gone down and her peripheral vision to her right side had altered. I expressed concern to the ward staff and was met with distain and disinterest. Then that evening I received a call saying Mum had a fall. She was unsupervised on a neuro ward. On my way down driving back I received a call on my phone from the hospital; first time I’d heard from them; I stopped in horrendous weather on Bodmin moor to told about my mums rapidly deteriorating condition and a DNR; I was so so distraught and on my own and have never felt so much despair in my life. I arrived at my Dad’s and took him up to the hospital. We were met by two senior doctors, who told us Mum had suffered from an ischemic stroke in addition to her haemorragic TBI stroke; mum was transferred to the stroke unit. Since then Mum has been very up and down. She’s had yet another unsupervised fall. My Mum’s ‘journey’ has been appalling both from the ambulance and hospital Trusts. It’s been a continuous catalogue of errors and poor practice or care & communication. I am beside myself with worry; anger and trepidation of what ever the future holds. It has been, is and continues to be horrid; I feel I am constantly bombarded daily with challenges and I’ve had enough. I want to crawl under a stone.


@sandra24-r Hello and welcome. You have indeed joined the journey of hell. Every situation is unique but your story contains some very familiar elements including frustration and anger towards the situation you’re in. One of the hardest things to handle is acceptance of what’s happened, but if you can do that it will help you to perhaps begin to see a path through the troubles ahead. Try to deal with individual problems one at a time because that will feel less overwhelming and you will begin to feel like you are making progress. Right now you want to crawl under a stone but please try to kick that stone aside because your parents need you to be strong and help them through this. If you have any questions please ask here and somebody will try to help you. You could begin by searching and reading through the topics on here which contain a wealth of first hand experience from people who have had to deal with similar situations to yours. Best wishes and I hope that you can summon up the strength to continue with your journey.


Hello @sandra24-r

Welcome to a wonderful club that nobody wants to join. Now you’re here you’ll find there is an empathetic and knowledgeable bunch - @Strings has already started demonstrating that :slight_smile:

this is a very good place to let out anger cathartically to a community that has been there and does actually 'get it’, rant, cry but also to celebrate the small victories that the journey is likely to deliver over time

I recommend reading what others have written here :slight_smile: that way you get some sense of perspective about the journey you are on. There are many similar stories here. I suggest this one tap the blue text which lays out several months and has recently been followed by mum at home - there are other threads started very recently.

In fact there are lots of informative discussions here that you will find by reading and searching.
When you’ve worked out which way is up and which way is down we can point you to them.

Can I respectfully suggest that setting aside your anger is in your best interest, save for other energy consuming emotions as soon as you possibly can? :slight_smile: - anger won’t help in the long run, & will hinder.

There may be a time in the future when returning to them might be appropriate.

The medical staff, in general, are trying to do the very best they can for a great many people with challenges from every angle. One of their battles is with a system that they are inside and you have seen the worst of. Stressing them because of the system they can’t change may not get the best from them :frowning:
Embracing their struggle will likely secure a better reaction than triggering their defences

A piece of often repeated advice is that all stroke journeys are marathons not sprints - so Stay Strong, take some comfort from the fact that there are many stories on here that will show you improvements happen over time and while they are no guarantee they are the norm But also take heed that you must ration your energies so that you can go the distance


@sandra24-r Hi & welcome to the forum. Sorry you’ve had cause to join us. It does sound like you & your mum have had an awful journey & I hope it starts to get better for you. Sadly your mum’s story is becoming more common these days. Ambulance waiting times are horrendous at times and indicative of a broken system.

As the others have said try & set aside your anger so that you can tackle what needs to be done moving forward. We are unable to change what has been done but you’ll need all your energy to deal with what lies ahead.

You can complain to PALS about what has happened so far & they will look into it for you. Unsupervised falls can happen but given it happened once they should have put something in place to stop it happening again.

It may be worth trying to get a meeting with her consultant so you can discuss your concerns, worries & fears so that you have an idea of what to expect.

Sending you my very best wishes. Take care.

Ann x


Hi Sandra
So sorry to read your story, it sounds like you’re all having a terrible time of it at the moment.
It can be an extremely frustrating experience with regard to hospitals but I’d encourage you to try and go with a base level that nobody deliberately wants to cause harm or suffering to your Mum. I found that helped me deal with some of the frustrations we came up against.
When we were trying to get answers and get our points across to advocate for Mum, I found I had to learn to change my language and approach to achieve this.
Instead of asking if we could speak to a doctor I would instead ask “what time can I see the doctor today?”. I’d make sure we had any questions written down to try and keep the emotions out of it and chance forgetting to ask something.
If for any reason we couldn’t see or speak to a Doc / Consultant in what I felt was a timely manner I would leave a written note at the nurse’s station overnight.
Ask questions, why or why not something is isn’t being done. And if they can give you any answer but you’re not satisfied, ask what is next or why they can’t do ‘x’.
Trying to take the emotion out of it and keeping things as clear, polite and calm as possible really did help all of us.
It’s so hard, but 3.5 months down the line, I assure you things can improve.
Good luck and keep going but also take time for you, you need to keep your physical and mental strength going x


Great practical advice

Lea (@BakersBunny) used home baking for the nurses & consultants as a good will gesture well :slight_smile:


Ah yes - donut Fridays help x


Sorry to hear about your experience. It can be extremely difficult when dealing with such challenging circumstances. My husband was in hospital for 4 months in total and trying to get information from them was difficult. He has asphasia so he couldn’t relay any information to me. If you are in Cornwall, the stroke ward at Barncoose are great for recovery. Make sure you look after yourself as well, which I know is easier said than done xx