Hi I would like to share my story and hoping others can give me some advice and support. On Friday 21st June my 55 year old husband left for work at 7.30am. We live in a lovely village in Cheshire called Parkgate. We have a 19 year old son and a 14 year old daughter and two dogs Benji and Chloe. He works in our local pub as a maintenance man and I have my own beauty shop, life was good and we were looking forward to the weekend. I received a phone call at 12pm to say he had collapsed at work from my son. When I arrived there was an ambulance already there. I honestly thought he may have fell from the ladder as he hates heights and
had been painting that week. However his face was dropped and he was sweating. the ambulance crew told me he had suffered a stroke and his BP was reading 250/120. We were rushed to arrowe park and straight through to resus. After what felt like hours my son and I were allowed to see him and we were told that he was lucky to have made it to the hospital, he had suffered a massive bleed on the left hand side of his brain, which had affected the entire right hand side of his body. The consultants asked me would I like to take
part in a trial that patients receive an injection that could stop bleeding, I was in a daze, I agreed and said anything to help him. He was then transferred to the acute stroke unit and put in a side room. The following hours he was monitored every five mins and they were struggling to get the BP lowered. On the Saturday morning the doctor told me that he had contracted pneumonia and there was nothing that really could be done, apart from make him comfortable and that I should consider a DNR as it would be unfair to inflict further pain. I honestly thought I was going to collapse and was waiting to wake from this nightmare. I asked all our immediate family and friends to attend the hospital that day and I spent the evening at his beside with my mother. On the Sunday morning another consultant came to see him, she was looking at him and then asked me to step outside, I braced myself for the news. She sat me down and said he was very poorly, but…she felt it was SURVIVABLE. I broke down, she told me she couldn’t guarantee he would live and the road ahead would be very long, but she was going to try, she ordered a feeding tube and said he would be given antibiotics to try and fight the pneumonia and various BP medication to try and get on top of the BP. She felt the bleed was caused by the BP and that the swelling was so intense they couldn’t rule out a tumour and if this was the case he would be transferred to Walton Neurology, but her instinct was it was BP driven. We are now over four weeks in. My life and our children’s has been shattered but he is here, he is alive. Over the past four weeks he has pulled out 6 NG tubes, and was put forward for a PEG procedure last week, which was successful. He has been receiving some
physio but is so weak.He has again this week contracted a chest and water infection (due to a blocked catheter) and the chest infection could be from the PEG. Everyday I get up, make a coffee and wait for the phone to ring, if it doesn’t I just countdown the hours to visiting. The medical team seem to have got on top of the BP and said his infection markers are coming down. But im absolutely terrified of him getting more infections, and not making it. When our son visits, my husband sometimes gives him a thumbs up, he did also cry when I played him some music, but this past week he has been so poorly. They have said they will put him forward for rehabilitation at Clatterbridge once he’s “medically fit”. He has lost so much weight and I just keep praying he’ll keep fighting. Please if anyone can offer any words of help or share your similar stories I’d be so grateful xx
Hello @NickyEvr
Welcome to the forum although I am very sorry you have had reason to join us.
Your story is unique in its details but not in major themes from many on this site - take heart that there are many on this site who have had a similar start to their journeys and now lead a fulfilling if different life to the one that they left when their stroke hit.
You’re right that a stroke doesn’t just hit the survivor but all of the stroke thrivers in his or her family. Having recognised that fact do not overlook your own need for care because you are now the linchpin around which everything pivots - so priority number one is to find carers support, to be told by someone you respect - so you fully take on board - that you should not feel any guilt, to take rest and respite and assistance whenever you can whether offered or cheekily pinched. Everyone around you need you to have taken it. You, your children and eventually your husband may also suffer PTSD (possibly even your dogs but that last will be controversial I expect)
The welcome post says a lot that you won’t find elsewhere because it was written by a group of us who have been there rather than employees of some organisation.
In it (because I reference them so often I’m about to add them) You will find links to several threads that have run over months and unfold other people’s anxieties and the journey to a new normality that can be a rewarding life.
You’ve already run into the medical professionals who tell you it’s all doom and despondency - and in some cases it is but it’s never right to emphasise those messages. I’m glad you have also had a more balanced description. Stories of never walking or talking (or swallowing) again are most noticeable here by the number of people who have disproved the professionals “are the experts” - often they are not.
The NHS is still pretty good generally at acute care. It’s a long long way behind on chronic care. The infections are things that they know how to manage -Fingers crossed for you there 
The sooner you can get him out of hospital the less infections he will face!
Start talking to occupational therapy about house adaptions and discharge package arrangements such as ramps and commodes etc. Some authorities are good and some are slow. They’ll be a council element in all of that. Start the ball rolling but the details will require more understanding which you will be able to find by reading some of the back scroll that exists here.
This is an excellent place to all of ask questions, share concerns but also to have a proper cathartic rant or and seek a sympathetic ear to just let it all out. Everybody’s combination of needs is unique but the individual bits that are combined have all been expressed many times with remarkably insightful replies across the wealth of experience recorded here
Others will be along soon to say hello
Reach out as you need
Caio
Simon
Nicky,
hello. Nasty business ; hang in there, and have complete faith in his recovery!!
I too suffered from a bleed, with BP 269 / 198 (not a misprint) 2 years ago / age 57 now 59. Not survivable according to the medics; but it was and is survivable!
I have a way to go with my rehab, but I work hard ; my wife, a Chinese doctor, and a radiologist and the odd physio are part of my team
You can read quite a lot about me, I’ll just say that my life has changed with a new purpose ! To recover, and I certainly go for it !!!
good luck, Roland
A painting of an old mill I did yesterday
Goodness me! What a story. Thank goodness he is here and has passed the worst. We must all hope that our recovery will come right in the long run, sending healing thoughts to you and the family
@NickyEvr Hi & welcome to the community. What an emotional roller coaster of a ride you’ve been on already. Thank goodness for the second dr who gave you all hope & started the treatments needed. It sounds like some progress is being made & once they get on top of the infections he’ll be able to start more of the recovery process.
@SimonInEdinburgh has covered most things so I won’t repeat them but there are many people on here who prove the drs wrong & make plenty of progress despite being told they won’t.
It won’t be easy & you have a long road ahead of you but with bucket loads of patience & determination you can make progress.
It is important to look after yourself too. Very important. Take time out for you when you can & don’t turn down offers of help. You’ll need them at various points no doubt.
Wishing you all the best of luck & please do let us know how he is getting on.
Best wishes
Ann x
Roland, That URL generates a 403 (must be logged in to flikr to view) error. 
I see you’ve now fixed it
Great painting! You’re very talented.
By the way have you heard from Outlander? Hi p.m. several weeks ago because I hadn’t heard anything and I still haven’t
Hi all thanks so much for your replies. They have given me great comfort and I feel like I have somewhere to turn too. Si has now contracted covid which apparently is rife in the ward and hospital. He has been put back into a side room and they are continuing with the anti biotics for another two days, they were due to finish today for the second infection he caught. I was told yday but the first doctor I saw (the one who gave me the bad news initially) that all his infection counters are coming down? His had a x ray and another ct scan, the bleed is reducing and his chest x ray shows no pneumonia just a few secretions at the top of the lungs, he said he’s hoping he can be moved to a rehabilitation centre at clatterbridge as soon as next week!!! I do want to believe this but I just can’t get too excited but I’m praying he fights this covid and we can move forward xx
@NickyEvr sorry to hear Si has caught covid. It does seem to be on the rise everywhere at the moment. Hopefully he’ll get through that quickly and then be able start the stroke recovery process. Fingers crossed he does get to the rehab centre soon. It’ll be better than the hospital for him i’m sure.
It’s good that his infection markers are decreasing & that the bleed is resolving.
Best wishes
Ann
Thanks for your message Ann. Si was much brighter yday but the hospital have told me the doctor who said he would be going to the rehab centre next week really shouldn’t have said to me 
. I was wondering if anyone (maybe @pando as I know you had a similar episode to si) could shed light on the speech side of things. Si can’t speak at all, we get the off thumbs up 
and he does roll his eyes when we say certain things in a sarcastic way 
) it’s five weeks tomorrow and I’m wondering if the longer he doesn’t talk the worse he will be at recovering that? Xx
Hello Nicky,
I had aphasia only for a week, until my body cleared up the blood-brain barrier breach. This was lucky because most speech centres are in the left side of the brain.
ciao, Roland
I am genuinely worried I won’t hear him talk ever again, he does make grumbling noises but because he’s been so poorly he hasn’t had any speech therapy since he arrived at the hospital
Thanks so much your reply Roland xx
Wait a min, Nicky
Have you read or followed Linda Radestad’s story ? Her book, Stroke Rebel tells about how she could not utter a word after her stroke. Now she can talk enough to make herself understood. I follow her course, with Arjan Kuipers called Brain Rehab and it’s the best resource on the internet
good luck, Roland
Hi @NickyEvr
Si’s lack of speech could be either neurological effects on his muscles to control his vocal cords mouth and tongue etc and or neurological effects on his ability to identify the words required to communicate and or just being too fatigued and unwell with the other challenges he’s had to have the cognitive energy and possibly a combination of all three.
Speech and language therapy well mainly deal with the first of these three. Time and healing energies diverted to priorities to clean up the immediate trauma damage may see improvement in the latter.
That leaves the ability to think in language terms . He could be affected in both the ability to understand what he hears at and or to formulate what he thinks.
Time will tell. Clearly a worry when clarity is not forthcoming but there are plenty of stories of people regaining all sorts of capabilities months and years after stroke so there is never a time to give up hope
Caio
Simon
Good to hear that Si was much brighter yesterday. I guess the rehab centre might have to wait a bit longer. I’m sure he’ll get there when the time is right but whilst he has medical needs that need treating he is in the right place.
Hopefully the speech therapy will start soon and once it does he should start to improve. As with other stroke things it’s a balancing act of dealing with immediate needs then starting the therapy etc. I suspect a delay won’t affect him longer term as long as he starts to work at it when he is able to.
Best wishes
Ann
Thanks Roland I’ll look that up now. Thanks guys for your replies also @SimonInEdinburgh @Mrs5K The speech therapist visited si yday and said she believes there is a swallow there now also, I’m hoping she comes again today to see him xx
There are dysphagia swallowing exercises on YouTube worth having a look at
Caio
Simon
Firstly, I’m so very sorry this has happened to your husband and your family. I know how deeply traumatic it is. My 77 year old mum had a massive stroke in February and came home 3 weeks ago. She went through a nightmare of a time -with pneumonia due to aspiration, UTI due to catheters, right side paralysis, aphasia (she can’t talk much at the moment) and is doubly incontinent. It was hell, I can’t lie. But she got through it.
I was there almost every day and my step-dad was at her bedside daily - for 5 months. I have a few choice words about her stroke ward in Ipswich Hospital, but I’m sure your husband will get better therapy where he is. Ipswich unsafely discharged my mum in the end and my instincts were tell me they were rushing her out in the end, so follow your gut throughout. As I said I’m sure this won’t happen to your husband - it sounds like they’re doing everything they can for him.
Question everything you’re told (you’ll get to know the terminology and the processes which is invaluable) and make sure the physio and speech and language therapists are doing their job properly when he’s ready.
Being there for him is important and you know him, so when you see the little signs of progress, encourage him.
As for you, pull in as many favours as you can from relatives and friends at the moment. If you’re too tired to be in hospital, ask someone else to sit with hubby for instance. Getting your rest is really important as it is a very intense roller coaster ride which may continue for a while to come.
All I’ll say now is that if my 77 year old mum can get through the other side and back home to continue her therapies, then I am positive your husband can too.
I’ve also spoken to other people who’s partners and parents of all ages - including elderly - who are recovering from massive strokes. It takes a long time and things may not be the same however, don’t let your mind run away with you. Take it hour by hour, or day by day.
Sending you tons of love - hang in there.
x
Great post @EMG72 - lovely to see you paying forwards the support from last march/ April onwards
It’s what helps everyone massively
Wise words to @NickyEvr to take all the rest / support she can get and I’m sure it will be comforting to hear yr Mum is on a improving path
Caio
Simon
Thankyou so so much for your message. Would you mind if I knew your name and if I could message you directly. Your message has given me great comfort thanks so much Nicky xxx
If you click @EMG72 's avatar red circle with E in it you’ll get a summary of her profile.
On that screen there will be a message button which will start a thread with just the two of you in it. Either of you can invite other people to that thread.
If you click the summary page’s header you’ll get the full profile and if you click the three lines you’ll see all the posts that EMG has made (if you want further useful informed reading about someone’s recovery journeyl
- in the welcome post there is a reference to our best posts and in there I think there are several threads - memory was affected by my stroke so I’m a bit hazy )
Caio
Simon