Help, advice needed

[Kessler81]

My mother had her haemorrhage on 01/03/19 she was admitted to hospital, she was lucid and able to converse, she had surgery the following morning - coiling and is due more surgery for a diverter to be fitted in 14 days, our concerns are that since the surgery she seems 10 times worse, she is confused, paranoid her eyes look vacant and are darting all over the place, she is convinced the hospital are trying to poison her, and she didn’t know who I am.

Before she went down to surgery I spoke with her on the phone and as I said she was fully aware of what was happening and going on.

I ask the staff, if they have any idea why she is now like this and all they say is they aren’t sure and there is never a consultant available to speak to, I am generally at my wits end with worry.

Any advice or similar experiences would be greatfully received.

[tillymint16]

Hi Kessler

Your Mums decline is probably due to the damage the blood does to the brain over hours and days after the event. Patients can seem coherent and speaking but appear to get worse when damage spreads.

So sorry for what you are going through but someone should be explaining this!!

Stay strong xx

[Kessler81 in reply to tillymint16]

Thank you Tillymint

[cat3]

Hi Kessler. Your mum's brain has suffered trauma from the bleed and the intervention, and any procedure is sufficiently invasive to disrupt normal brain function, resulting in severe confusion.

After coiling to fix a haemorrhage in 2011 I was (apparently) a handful. I was hallucinating constantly, had to be restrained from pulling out my tubes and trying to escape, and complaining about the filthy ceiling in a pristine, immaculate ICU. when I visited the ward 5 months later to apologise and take chocolates etc., I was assured my behaviour was mild compared to many and that, by brain injury standards, such behaviours are not only 'normal' but expected.

A week is literally nothing in recovery terms ; my stay lasted 2 months and it was a further 2 years before my level of recovery peaked. So please don't despair m'dear ; you'll probably see your mum go through stages of confusion, emotional upset and even anger before she gets the hang of her 'new' self.

Keep up the vocal and physical contact as, repeatedly, they'll be very reassuring to you mum. But bear in mind that she won't be dwelling on any distress she feels as she'll be living 'in the moment' ; her brain won't be capable of retaining information right now.

Let us know how your mum progresses, but don't be surprised or anxious about the slowness of progress ; it's absolutely normal. Best wishes, Cat x

[Kessler81 in reply to cat3]

Hello Cat,

Thank you so much for giving me some insight.

I am so glad you are recovering well and I will keep the group dated with mum’s progress.

Your words meant a lot, in what has possibly the worst week of my life.

Thank you again xx

[Woo777]

Hi , I was just the same , it took me a while after the coiling to make any sense but I assure you she knows your there x

[Lisers]

Speak to the ward sister tell them you are not getting any answers about the concerns you have regarding your mother. If you still get nowhere you can complain to PALS in the hospital that usually works you can find out how to speak to PALS from information around the hospital or from reception .. goid luck

[Kessler81 in reply to Lisers]

Thanks Lisers, I called the ward sister this morning and they are trying to arrange for my sister to see the consultant this morning x

[WinB]

Hi Kess,

I always shorten names sorry, I remember passing out in 2009 and do not remember anything until a shunt was fitted in 2010 as I had Hydrocephalus. All what I put is what I am told by Family. I was sitting in hospital bed and said to my Daughter my treat Sarah ? I thought I was in a café. Then when the OT's came to see me I didn't like them don't ask me why and I called them all witches, in my broken mind they were hurting me!! So my Daughter was always called in when they were there as I cried. Good luck to your Mum and remember this can be long Journey for Mum and your Family. She needs you more than she has ever done now xxxx make her smile or talk about old times as she cannot remember what happened an hour ago if anything like me . Never give up on Mum as my OT's said to my hubby and Daughter say goodbye to who your Mum once was as she'll never be the same. Wanted to put me in a home Grrr ...Well I am back to tell them !!! Make Mum happy, my sisters sang me songs and I awoke singing to a nurse xxxxx Always smile and act happy with Mum as she needs it at moment no Doom and gloom xxx

[Kessler81 in reply to WinB]

Well done you on your recovery, I always plaster a smile on my face when I visit, even though I want to sob my heart out.

My sister has just been told that mum has developed a infection

[WinB in reply to Kessler81]

I had Ventriculitis followed by UTI and then Sepsis always make sure mums catheter is emptied on a regular basis or remains low. My Daughter saw mine full not a nice subject but !! She asked a helper "I think my Mums catheter needs emptying" carer ignored her and my Daughter turned and saw the carer go " Jesus" and tutted at Daughter. My Husband and Daughter did shifts with me ..Hope Mum will be okay it is a slow progress. I took 5 steps forward and 3 back. Try and be brave and hope Mum gets through this infection. My Daughter said to her Dad "Will Mum get better Dad?" Her Dad replied " yes but when" it is a worrying time for you all xxx chins up you and Sis xxxxxx

[Kessler81]

I want to thank everyone who has posted on my thread for your insight, advice and kind words, it has been very much appreciated at this time x