New Recent Life Update

[Shabana1974]

Woke up Friday as normal hubby got up at 10.45am and went to bathroom 11.07am he rang the bell (I have place doorbell clickers around the house since his stroke) went upstairs to find him gripping the door frame unable to move. Dripping in sweat

Me and my son managed to usher him to the bed. And I said I calling him an ambulance but he refused repeatedly but could still speak. I left my son looking after him whilst I got my b12 injection and returned within 20 minutes. Again I said let me call an ambulance and Again he refused. We managed to get him into the lift and he just stood there I told him to sit down but he didn't comprehend so I pushed him into a seat position.

Once downstairs my son carried him from the lift to the sofa and I called my daughter. She said dad we need to get an ambulance. By this time he was still refusing but his no was slurring.

I made an excuse and went to the kitchen to talk to my daughter. I made him a cup of tea. I took it to him by this time he was staring with a very vacant stare and didn't even acknowledge the tea. And was unable to speak. (Exactly how his previous stroke started)

I called an ambulance and the Fast tracked him under Stroke protocol. After ct scan they said its not a stroke🤦‍♀️🤦‍♀️ Even though very very similar to previous stroke they are saying its a Vacant Seizure but will resolve within 24 hours.

24 hours on still extremely confused could only remember his first name and nothing else. But started having his normal seizures that he's not had for 2 years but repeatedly. This continued throughout the night. But when I went to visit him on Sunday he remembered our names but not his own name. But seizures had stopped.

Monday still no tests to see what happened and why it happened despite telling my CTs are not that accurate and they would do a MRI.

Apparently physio did an assessment and warned the nurses to leave him alone in the bathroom they discharged him.

Now home he's still confused his balance is terrible and already fallen once. He's struggling to walk a quarter of the distance he could before. And yesterday he kept saying sugar. What he actually meant was give me insulin. Today again he said sugar when he actually meant clean my hands.🤦‍♀️🤦‍♀️🤦‍♀️.

But apparently he was fit to come home. Without diagnosis.

This is how he was post Stroke I firmly believe he's had another. But who can I fight with

I just got an email from his Neurologist she has arranged for hubby to have MRI and EEG ( Electrical brain activity monitor)

[Lezzers]

Hi Shabana, I have no idea how to advise you, I just wanted to say how very sorry I am to hear about your husband & how worrying & scary it must be for you & your family. Would your GP be able to advise here? Do you have any contact numbers for anyone who looked after you husband after his last stroke?

On another note, I now totally ignore my husband when he doesn't want me to call for an ambulance, if my gut instinct says phone, I phone, it saved his life last year!!

Xx

[Shabana1974 in reply to Lezzers]

I have just emailed his Neurology Dr, explained everything and I am not happy with his baseline he's not at hid baseline when he was discharged 3 years ago after the stroke his baseline was better than today even though after that he had a further 6 week of intense therapy physio, occupational and speech

[Lezzers in reply to Shabana1974]

I hope you can get it sorted ASAP

[Shabana1974 in reply to Lezzers]

I hope so too

[Fuchsia23]

hi, this kept happening to my mum in the years after she had a stroke. After the first one of these episodes, which was diagnosed as an ATI, the ct scan didnt show anything. However later scans showed signs of the previous ATI. The doctor told us us it was normal for nothing to show until later. Although we were always told ATI's didn't cause any symptoms after them like a stroke we found that mum was always confused for a long time, she'd forget everything that had happened over the previous months and her leg and arm that had been affected by the original stroke would get very weak and hard to move. Fortunately with time she always regained her memory, or most of it, and her mobility improved to near what it had been with a lot of work on it from mum. She was always so determined to "get going again".

[Shabana1974 in reply to Fuchsia23]

Yes that's what's seem to have happened he's literally shuffling short distance and very unstable. I said to them are they sure it wasn't a TUA they keep saying no but then admit the CT not very accurate and it may have been to early to show on the CT an MRI would be more accurate.

[Alfy53]

Can't help you sorry but just to say override his pleas not to call ambulance if it happens again. Just call the ambulance if you want to

[Shabana1974 in reply to Alfy53]

Thanks

[Wooodsie]

They are not very accurate with stokes. They said.my dad had had a stroke, discharged him, we had to keep taking him back to a&e for more strokes and they would admit him again. Then one day in a&e a female consultant came ro us and said your dad isn't having strokes he's got a brain tumour. But I have to send him back to the stroke ward because that's what his notes say. When you get back up there with him, keep telling them he's got a brain tumour.

I won't finish the story, but use PALS to get him diagnosed properly.

[Shabana1974 in reply to Wooodsie]

Thank you I understand where your story is going 🫂

[Suebedoo]

Hi - this sounds frightening and stressful for you. Keep pushing for medical attention even now as in my experience you sometimes have to almost make a 'nuisance' of yourself to get the right treatment. Just a thought - has he been tested for a urinary infection because this was similar how my Mum behaved when she had severe urinary infections.

[Shabana1974 in reply to Suebedoo]

Thank you yes they checked for urine infection that's clear. Fortunately hubby is very complaint in drinking 2.5litres of water a day, and has been since husband liver transplant in 2019

[Turnipgirl in reply to Suebedoo]

Sometimes you need to kick up a fuss don't you rather than sit around being fobbed off with excuses!

[Numptybrain]

It sounds like you need a second opinion and having a brain haemorrhage myself and a TIA it does sound like he has had a stroke , mine wasn’t detected on ct or lumbar puncture they had to do an MRI so maybe that’s what he needs. I really hope he gets sorted and soon, definitely physio should be coming. I’m still weak in my limbs from it and have had frequent falls, it happened in 2016 and I’m 61 now, it’s affected my memory and word finding, I have good and bad days but I’m very lucky.

Take care

Wendy xx

[Shabana1974 in reply to Numptybrain]

Thank you my husband was 54 when he had the original stroke and now 57. He called me Fatima last night 🤦‍♀️🤦‍♀️🤦‍♀️ that's my daughters name. He reliesed the mistake but could not find the right word.

[Numptybrain in reply to Shabana1974]

It’s hard, I forget my daughter’s names it’s so embarrassing but I know they understand. I’m under the memory clinic but unless I show signs of dementia there’s not a lot they can do.

Take care xx

[Qualipop]

Either get your GPs help or contact PALS. That's shocking treatment

[Shabana1974 in reply to Qualipop]

I will see what the Neurology Dr says then ask my GP my GP practice is next to useless

[Qualipop in reply to Shabana1974]

Good luck.

[Blearyeyed]

Call either the Neurology Department back now or ring you GP and ask to have him immediately readmitted on to a ward.Explain his lack of thinking skills and confusion , his instability, and that he's had a fall already and that his current state (and this wording is important) means that it is dangerous for him to be at home and that it is unsafe for him to be at home without professional support and they have not safeguarded his health by discharging him before having the necessary tests and giving him ongoing home visits. Point out his Discharge has not been appropriate for your husband's health needs.

The words "dangerous" , " not safe" and "safeguarding" are red flag words in relation to a patients care and all departments and doctors are meant to act immediately if they hear them or they are can be reported for not following care guidelines.

Also politely but firmly state that although you prefer not to be put in the position to complain that if your husband is not readmitted and kept on the ward until he is appropriately stabilised then you will have no other option but to contact the Chief Executives Office as soon as you get off the phone to make an official complaint and get this inappropriate treatment plan dealt with immediately.

Point out that you may be at home but you are not trained or well enough yourself to take on the more complicated needs of your husband in his current state of confusion and instability and that in reality the consultant cannot be fully confident that your husband hasn't had a stroke or may need other treatment without the accurate tests.

Point out that if you were not at home there is no way your husband would have been discharged without ongoing care and that this should have been sorted out prior to his discharge.

You always tell them that you will report to the Chief Exec in these circumstances as PALS is not at all useful , or a big enough threat to any department when it comes to serious complaints. A letter or call to the Chief Exec must be recorded in the hospital record and can affect their league table statistics in a way that a Pals report does not. The Chief Exec hates getting complaints and will usually take immediate action to rectify the problem as well as a big kick up to the bum to the department in question.

If they are still refusing , which I'd be surprised that they would do , make the call and make the report and no matter what your husband says get family to help take him back to the hospital and get readmitted via the A and E route.

If your husband also has diabetic problems this should also have been investigated and his sugar levels stabilised before leaving hospital as this could also have caused the problem.

So sorry you are going through this , I know how stressful this must feel as I had to fight tooth and bone over the phone during COVID to prevent my Mum from being discharged in similar circumstances and then despite getting her in rest home medical care she had to be readmitted because the competency tests they do are not fit for purpose, especially if they are completed by nursing or physio staff no matter what their experience might be.

Good luck and keep us updated with how you get on. Bee

[Shabana1974 in reply to Blearyeyed]

Thank you,