My Mum The Highs, The Lows - The Nightmare

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Hi, I just wanted to reach out and see if anyone else out there has suffered the same experience as us? I will try and keep this short and won't get into the nitty gritty too much! Our Mum was 69 and had a stay in hospital due to fluid retention and difficulty breathing, she was diabetic and getting tired more. She had a two week stay in hospital to lose fluids & was given medication to thin her blood. Almost ready for home and doing well, mum suffered a bleed on the right side of her brain, the nurses hadn't even spotted she had a stroke and she was unchecked for at least 4 hours. Mum was given a reversal drug which didn't work and after 24 hours or more was rushed to another hospital for emergency surgery. She survived afterward and had a long period of recovery ahead. After approx 5 months of witnessing my mum go through the motions and others in the wards, it seemed we were on a time limit and mum was being rushed through their conveyor belt of a system when boasting they were one of the top five stroke units in the country, we had good care to begin with but as soon as mum showed signs of not being interested they gave up, put her into the social system and left her at their mercy. Mum came home bed bound & needing care 4 x a Day. I worked full time and would care for mum in the evening before and after the last carer had been. Mum developed bed sores and wasn't eating and drinking properly. Due to our experience I kept a watchful eye over her & tried so hard to get the help she needed, I was amazed that no on had informed her dr. The districting nursing team at first appalled me but I complained and she started to get her needs met. My mum sadly passed away this year from a further large stroke which was an icheschimac intercerebrayl blockage and caused the left side of her brain to be completely damaged. They could do nothing, the end of life process was horrid and I hope and pray no one else has to see what I have visiting mum every day, watching as it all fell apart from social services downward to the care agency provided which did a really bad thing and has lied to me in their reply to my complaint. We tried our best to hold onto mum but then having to let go was deverstating after everything went through, 5+ months recovery, being placed in the wrong type of accommodation in order to free her bed as the home wasn't ready to receive her (health and safety - wiring problems) going back to hospital because of it, the nurse visiting told social worker she should be ashamed of herself! The care given by the care agency which went wrong on the Saturday (medication!!!!) and then by Wednesday the final blow!!! We were pressured to turn the machine off! No chance of recovery this time they said! Our world came crashing down after only having her home a meagre 2 months! To say I'm disgusted and very upset would we an understatement! We miss her so much and I owe it to her to share our story, in case I can be of help? I have complained and I now know what to check for, who to trust. Stroke patients need more support, more time in recovery and not just seen as a number. It even came down to the equipment provided for her at home which we were told by OT and Physio was actually wrong, the mattress etc, just added to her suffering and loss of indepenace, she would have good days and bad days, she was finding it hard to remember dates and had short term memory issues, cognitive issues, weak on her left side, problems with her swollow after a tracheotomy, making sure she was being looked after became stressful, emotionally challenging, I felt totally lost at times & didn't know what to do. Thanks for listening ❤️ H x

Sounds truly awful Helene.

The feelings still sound so raw. How long has it been?

Best wishes

All started Nov 15 and final end August just gone. Very Raw indeed and feel a great deal of sadness when I see stroke paitents. I am now also fascinated with the Brain and how it all ticks along. What parts of the brain stroke affects and how that affects each person. The recovery was slow and mum never suffering from depression and having a tough time in life started to suffer. Visiting was stopped for two weeks because of nurovirus and mum went from positive to not wanting to eat, sleeping lots, not fully engaging. Refusing to participate at times. She was fed up of being poked and prodded. Not understanding what was being said to her or what was being arranged for her behind the scenes. Watching our mum independent and in control, losing all control and eventually believing this was her lot! The best your going to get, she would say the lights are on but no ones home! Saying I'm brain damaged rather than I have had a stroke. She eventually lost the will to attempt stands, she became weaker and eventually hoisted from bed to chair, she hated her time in hospital, was desperate for home, didn't want to be with anyone else but with her family. She was so scared. The final two weeks in hospital. On a ventilator and being told to make the decision to take it off, she continued to breath but as soon as it got too much for them to keep oxygen levels stable they stopped and began the final end for her! We just couldn't believe what we were experiencing. I know we had to but it was the way in which they did it that got me. A total utter nightmare from beginning to end!

Hi Helene
So sorry for your loss. As Kevin said it sounds truly awful and reinforces that no matter how bad we might think our own circumstances at times, there's always someone else worse affected.

I can only imagine that you're still going through shock with what's happened.

Please come back and chat some more if you feel up to it; there's always someone around.
Rachel x

Thanks Rachel,
Its good to talk about it I think. I feel that no one really wants to talk too much about strokes and how they affect a persons life. It's such a common thing. Watching mum go through the mill you just wish they did more, wish their was something different that could be done other than the usual methods. I read about stem cell research and the possibility of restarting the repairing process in someone who has had a stroke. A Dr in ICU said we can replace most organs in the body but the brain, that's something we still know very little about.
Wish we knew more.
May I suggest and fantastic documentary to everyone reading my post called my Beautiful Broken Brain. It's on Netflix and really worth a watch. The experience of Lotje really made me think about how mum saw the world after her stroke.

Thank you xx

Sorry to read your recounting of what your mother experienced. It so very wrong what she had to endure and how you are still suffering. My condolences. Stroke victims are just that , trapped in an uncaring , cruel system. I hope you find some peace over tome snd can hold onto you good memories of your mum.

Many good wishes

Hi Helene
My heart goes out to you, losing your Mum is devastating under any circumstance but especially where you feel you have no control over the situation. I am a carer now but I can understand your views. Our story briefly ...
My partner was in critical care for 6 weeks then in an acute ward for 3 months then rehab for 5 1/2 months. He too had a trache ,in for 3 months which became as traumatic as the stroke itself. He was 48 when this happened, 4 years ago. He has aphasia and hemeplegia but can walk a little with a calliper and his right arm has a little movement. He was discharged from hospital taking 26 tablets a day. He now takes 4 .
Form very early on in his recovery I stopped talking to the doctors and the consultant because I was sick of being told what he would never achieve, how he couldn't do the 'tests' they used to assess his capacity, and just the general negativity when all you need as is something positive to keep you going. I can see, quite easily , how the system can let you down because virtually EVERYTHING involves some sort of fight just to get some assistance. He didn't have a voice so I became his voice.
You are right that these things need to be heard. I could write a book on the amount of times I have had to fight the 'system'.
However I felt I had to comment on your post because I understand some of what you experienced I am so sorry about your Mum and hope you can get some comfort by posting your thoughts.
Kind regards

Hi Sandra,

A big thank you for your kind words and for sharing your story. I had to find the fight when I was at my lowest. The consultants and hospital staff seem set in their ways and made decisions for us, when we fought them they became stubborn. They too told us that mums recovery was slowing and this was best we could expect. I wish she could have walked again, but she had just lost the will and confidence, something that the teams assessing her took for depression and started medication for it. It didn't help she was too frail. I love speaking with people like yourself to see if this is a common theme. Apart from dealing with my own depression I am still fighting for justice. I won't rest until I have found peace for my mum. I too could write a book and maybe one day will. Wish I could help others in similar situations as me now I have lost mum, I just want to help & looking at different things I can do.

Hello again Helene,
I do hope that the friends here have brought you some outlet via their empathy? My thoughts for you are more about you looking forwards to live the life your mother gave you. Holding onto too much of your bad experiences might have a negative effect on you,? Your ambition to help others is praiseworthy, do something if it helps you, but perhaps considering you as her real legacy, more than are her dreadful final days might help you and others more?

Take care of yourself
Kind regards

Dear Helene
So sorry to read about Mums passing and, even worse, the manner of her passing.The care systems in the UK are not up to the task. I guess in the past it was family care and now that's no longer commonplace, the care system can not cope.
The funding for stroke is, I am lead to believe, a fraction of the funding for cancer. The NHS can not cope with rehab of stroke survivors. Resources just do not stretch that far.
When I was taken to hospital I begged to be "DNR" but no one took any notice.
However, in no way detracting from your tragedy, can I say that I received superb hospital care, even better initial "at home" NHS rehab and my GP does try very hard for me.
I think some parts of the NHS are beginning to gear up for stroke and I was a great beneficiary of that.
Lots of people die immediately from stroke, lots are like me and not only survive but recover to a good quality of life. Then it is those like Mum who are the most sad and unfortuneate cases. Badly afflicted but survive for many months and perhaps a few years. I thank God most days that I was blessed by a decent recovery.
I do hope you can think of the good years with Mum and that you can ease away from the horrible memories of 2016. This forum is filled with wonderful people who are not only kind but actually understand the nature of what stroke survivors go through. I hope this forum helps you let go of the horrible memories.
Deepest sympathies to you and your family




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