Uncle had a stroke

[longlostbrother]

Hi

My uncle has had a stroke, the hospital aren't telling my family much so after abit of advice or any experience.

It happened early hours Wednesday morning and luckily his son found him while he was still able to speak rushed him to the hospital were his face started to droop and he couldn't talk or move his left hand side. Yesterday it looked like he was slowly getting better still a shock to see. Unable to move still not sight in his left eye looks like he's glaring and not actually looking at you, mumbling etc. Today was the biggest shock he was unresponsive his older children called for the nurses who had to massage his heart to get him awake he's been in and out like this all day he's hardly talking now either. They've found he has a blood clot in his right side of the brain so giving him aspirin to thin his blood. But when his older sons was there this afternoon the nurse came in and said the doctor has told them if his heart was to stop they won't be resuscitating him and this was on his paper work also which was a huge shock for all his kids as this has never been discussed or even thought about at this point. He's only 58 years old so it's all shocking. When he was awake at this point he mumbled and that his children wouldn't want him to go just yet so they have said they would want him resuscitated if it came to this.

But he isn't on any heart monitors or anything. So how would they know if his heart was to stop. Obviously we know they are checking on him but the nurses aren't at his side every minute.

Has anyone been in this situation and have you or anyone you know got through this? It's been a heartbreaking time seeing a normal out going person to be bed bound not able to do anything.
Sorry for the long post. We are just desperate to know what we can expect In the next coming days.

I didn't want to read and run. My aunt has a problem with her blood and it causes it to clot. She had 2 strokes 5 years ago and has been left with a limp and minimal movement in her left arm. I do not know about your uncles resuscitation though but I wish you the best

@Lovethetimeyouhave thanks for replying. What your aunt completely out of it aswell when it happened? Or did she recover quite quickly? When they have done the scans today they said he's still in the stroke and it hasn't finished yet so this would mean it's been ongoing for the last 2 days. Which didn't know that could happen. We aren't being told anything that's normal or not which can be frustrating

Hi OP have you seen the details of the stroke helpline? Here they are just in case you haven’t:
www.stroke.org.uk/finding-support/stroke-helpline

I can’t help with your questions but hopefully others or the helpline can

I am sorry to hear this. It sounds like it is a bad stroke if it is lasting a few days. There is no gentle way to phrase this but if there is catastrophic brain damage it may be best for the patient to pass away. I say this from experience as my father had a severe stroke in his 50s and had very little quality of life for the following 10 years until he died. it honestly would have been better if he had passed away when he had a stroke. It's such a shock an trauma for the family, look after yourselves too. I hope he pulls around, there is still hope.

Oh OP, what a horrible situation for you all. I thought it was normal practice for a team to liaise with a family and get their agreement before the decision not to attempt resuscitation was made.
It seems quite unprofessional that you found out about this in such a way. In your situation I would ask to speak to the ward manager to discuss your concerns and maybe ask if a family meeting can be arranged so that you can ask all the questions you need answered.
Sending you strength.

Also it may not be useful to ask about other patient responses and recover times as every case is very different and what happened to someone else will not be happening to your uncle. Just ask the medical staff to be as honest with you as they can.

I don't have any first-hand experience but have known people to have pretty debilitating strokes that have left them with memory problems, mobility issues and a lot of pain at quite a young age which will see them in a care home for the next 20+ years. I do think knowing what they know now and how their life would be their DC would not have resuscitated them. However hindsight is 20/20 and they could never have fully known how her recovery would go, as I have known other people to come out of a stroke mostly in good health after their families being told to prepare for the worst at the time.

What a stressful situation for your family, hopefully someone with a bit more knowledge will be along soon. Really hope it comes alright for you

Thank you all for the replies.

I think we are just looking for answers at the moment and trying to get any info as we can. We have spoke tonight and have said his children really need to sit and talk if this was to happen his quality of life afterwards as the nurse said if they were to resuscitate him he wouldn't be the same so I don't think they would want him to survive if his quality of life was to change drastically.

We just can't at the moment see how he can come out of this with his normal life after seeing how bad he looks and is. It is heartbreaking to think only Tuesday we seen him and he was fine. And for him to be getting worse and still be in the stroke is just not giving us more hope.

@Lumene thank you for the link I have sent it to his daughter to have a look.

I'm really sorry to hear that your family is going through this OP. I'm not medically qualified but do have a decent depth of knowledge of stroke. I'd second the suggestion of Lumene to call the stroke helpline when you're able (they're open 10-1 tomorrow). They can't give you a prognosis but they will give you time to talk and can also signpost to local support.

I would say that in stroke recovery terms it's very early days. Everyone is different after a stroke, as depending where it's happened in the brain people are left with different effects and make different levels of recovery. Most improvement tends to take place in the first few months after stroke but some people do still show recovery for a long time after this. It sounds like they haven't managed to dissolve the blood clot however the body will naturally absorb this. The blood thinners will be to try to reduce his risk of having another stroke (as statistically you're at a higher risk during the days and weeks following a stroke).

Sorry this is a bit long and I haven't addressed everything. If you're unhappy with lack of communication from staff do speak to the PALS ( patient advice and liaison service) at hospital.

I’m so sorry. I lost my beloved gran to stroke and it’s just the absolute pits. It was 4 months of sheer hell before Gran finally left us, worse for her more than for us of course :(

Sorry to hear about your Gran it really is horrible to see anyone go through this. I've heard about strokes and the effects but when I've actually seen him it has been a complete shock. I think we are just after a answer of how long this will last, if he will make it and the outcome.

We just can't get over the resuscitation comment. It was so flippant. We think they should of been sat down as a family and told about this and if it would be in his best interest. And if they are talking about this now does this mean that this is what they are expecting the ending to be.

I had a stroke in my mid 30s. I spent a week unable to speak or do much for myself. I was lucky as I was in hospital when it happened and I had clot busting drugs quickly. I am fortunate to have only been left with slight weakness and horrendous post stroke pain.

But, because of the week I spent unable to talk or do anything for myself, I know if it happened again I would much rather not survive. I know it sounds awful, but DH and the rest of my family know my wishes and respect them. It's hard for anyone to understand how truly horrendous the effects of a stroke are unless you've had one.

for you and your family. It's a very hard thing to watch.

Thank you longlost, it was in 2007 so a long time ago x

We found no one would really tell us anything either about prognosis and Gran’s condition was so fluctuating. Physically she was really just a shell but mentally sometimes she knew we were there and who we were and sometimes you could see she didn’t have a clue. Whenever my mum asked about what was happening there was never the same answer twice sometimes there were physios dragging her out her bed when she had no physical capabilities and trying to get her on a walking frame ffs! It was weird it was like we all knew there was no hope but they kept trying to flog a dead horse and make us think there was hope. It took one nurse to take my mum aside and say 3/4 months is the longest anyone ever lives with what she had and it was 4 months to pretty much the day she was free.

My gran was found by her home help having just had the stroke about 15 mins before (she’d made a coffee which was still warm) and I don’t know how many times I wished she’d got there later so that gran would have been gone :(

Sorry that was a ramble. I feel for you all so much it’s so horrible :(

Wow @sparkli that is young to have suffered a stroke. How awful and scary.

Because we haven't been through this before except for his parents who had strokes and was many years ago we don't know anything about them. Or what happens next. I've been reading a stroke from a blood clot in the brain is one of the more common ones and people do recover but most with life changing effects.

I think from the answers I have got his children all need to sit down and really talk about what is going to happen next and be on the same paper if heaven forbids it comes down to whether he be revived or not. We just can't get our heads around what the worse could be and I feel sick thinking about it.

Do you think if he's not very much responsive now and worse than yesterday it's not going to look good for him? I'm sorry to ask that question because I suppose none of us knows but I would of thought he would be coming out of the stroke now and more alert

I know of three cases. The first a younger person than your uncle who has recovered sufficiently to go back to work but is largely wheelchair bound. Their life is very restricted by carers coming to get them ready for bed at 7pm despite requests to be the last person on their rounds. The 2nd, a little older than your uncle survived a number of years but was in residential care and unable to return home. The last was a lady who wasn't found for 24 hrs and was unresponsive for a few days before passing away.

If it has been a major stroke slipping away is probably the best outcome for your uncle. so sorry for you all, it's very difficult

@MrsCollinssettled that's shocking how all their lives changed.

No one has told us if it's a major stroke or not. But we kind of gathered that he's still not responsive and difficult to wake up yesterday and by the scans he's had they told us he's still in the middle of having the stroke which we had never heard of a stroke lasting for days. So we're assuming it's a major one. In that case by yours and everyone else's it's not looking good for him at all. I just don't want to be the one to tell his kids that. I think the hospital need to sit down his kids and tell them exactly what is happening and the probable outcome of this

A very good friend had a severe stroke years ago. He was 41. It was shocking. In the hospital people in there 70's would come and go in better states. He was there for months, and on many occasions begged me to kill him.
He had another stroke 2 years later and died.
I miss him terribly, but for him, if I'm honest it would have been better if he'd gone the first time. In his mind he had 2 years of humiliation, he'd been such an active man, and everything was taken away from him.

*their