Hello please can you people please offer me any advice please. My husband had a stroke 10 weeks ago. He was rushed to a hospital a good distance away from home. He had a clot in his brain and a big one in his neck and a stent was added. He came down with sepsis and was kept in a ITC for over a week. Then sent home to a closer hospital. Finally he was transferred to a rehabilitation centre. This week I attended a meeting with the staff. They have presented me with a worst case scenario. As after all this time he still can’t centre himself and is unable to sit without falling to the side. I have been told he will need 24 hours care. I can consider at home or a care home. I am so scared of what the future holds for both of us. My husband is 67 and I am 59. We have been so active although he was retired and did everything at home housework and gardening which he enjoyed. I work part time. I cry so much at the moment. Thank you for taking the time to read my post.
@Fran1 Hi & welcome to the community. Sorry to hear of your husbands stroke.
The first thing I would say is that at ten weeks after stroke, particularly what appears to be a major stroke, it is extremely early days and there is still time for things to improve greatly. The recovery path is generally a long one and takes a lot of hard work, patience and determination but if you’re both prepared to put in that work then there is every hope that things will improve. I think the drs like to give worse case scenario so that you are prepared but many of us on here are proof that they aren’t always right.
It may be that he needs full time care for now but that doesn’t necessarily mean it has to stay that way. If he can practice sitting up as often as possible hopefully over time he will start to fall to the side less. Recovery is a case of kerp trying & repeat, repeat, repeat.
I am tagging in @Mich-mm who has been in a similar position but is now making progress & can hopefully offer you some advice.
Being scared & anxious is very normal as life is going to be different to what you thought. That doesn’t mean in time that it can’t be good although maybe not what you had hoped. Speak to your GP about how you are feeling they can help. Also try the Stroke Association helpline 0303 3033 100 or look at their Here for You Service where you xan talk to someone who has been in your position.
https://www.stroke.org.uk/stroke/support/weekly-volunteer-calls
Ask away with any questions you might have. There are many people here who will help as best they can.
Sending you strength & best wishes
Ann
Welcome to the forum and I’m so sorry to hear of your husband’s stroke. This must have been such a shock for and very frightening🫂
I also want to tag @Bobbi and his wife @HHilary into here as they also have first-hand knowledge and experience of a major stroke and what it’ll take in recovery. But he can and get much better than he is right now. He was strong, fit and active before the stroke and that will stand him in good stead for the effort of rehabilitation. This is a marathon not a race, it’s going to be a slow but steady pace of constant repetition. With enough determination to get much better than he is right now, he can and will do it.
The Dr’s have to give the worst case scenario because they don’t know him, can’t see into the future and have no way of knowing what or how much of the brain is recoverable. They just don’t have the ability to know that. And those doctors who give out such diagnosis, do they ever see those patients again, years into their recovery to even know if they recovered or not? I know I never saw mine again.
Lorraine
People forget that all areas of the body can be affected by stroke, including the back muscles. With practice use of the muscles can return. At 10 weeks your husband is still a stroke baby. A rehab centre is the best place at the moment.
Can you find out the severity of his stroke on the NIH scale (The American NIHSS is out of 42) ? Most people here don’t know anything about this, but I think they should.
Since I’ve followed many stroke survivors, I think this is a good starting point so we can be on the same page.
Thanks, & wishing you & husband very best of luck, Roland
@Fran1 Don’t cry cause that will not make anything any better. The people you spoke with at the hospital are only going by text book. They do not know your husband. Family love always helps with recovery and I speak from experience as I am a stroke survivor. You need patience, not tears. I wish you and your husband well for the future and do not give up, Stroke recovery is baby steps.
Hi @Fran1
Welcome to the community, I’m sorry to hear about your husbands stroke and how difficult this time is for you both. It’s always a shock when these things happen and is awful when you get given the worst case scenario.
As @Mrs5K has said, please do reach out to our helpline, you will be able to get some helpful advice from them on the next steps and they’re also there is you just need to talk too. Please make sure you’re looking after yourself during this time too, we always say a stroke happens to the whole family not just the stroke survivor.
I hope you’ll find this community helpful, there a lots of members here that have been in similar situations so please do use this for any questions you may have.
If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Anna
Hello @Fran1 and thank you @Mrs5K for tagging me.i had an haemorrhagic stroke,a bleed rather than a clot.like your husband I can’t sit unaided.my body has broken down all my core muscles keeping me alive as I’ve been nil by mouth for 4 years.ot,pt etc.will help him build the muscles.but it will take a little time and effort from you both.
you should get yourself a copy of a book called Had a stroke? What now? by Tom Balchin. It’ll help understand what’s happened and what to expect. Your husband is at very early days. Far too early to be written off. The brain has amazing capacity to rewire itself.
Hello @Fran1 and thank you @Mrs5K for tagging me.fran I had my haemorrhagic stroke (a bleed rather than a clot) 4 years ago.like your husband I can no longer sit my muscles degraded and atrophied because I’ve been nil by mouth this whole time.but try your very hardest to get your husband eating again,I’ve been PeG fed for 4 years which is dehumanising and takes away the joy of being satiated and the wonderful sense of taste.i’d happily give you more advice if necessary.i’m now in a nursing home,having spent 4 years in a rehab hospital (RHN) but the only true rehab I had was decanulation (removal of tracheostomy tube)if I’d been encouraged to walk I wouldn’t now need surgery on my contracted Achilles tendons,ligaments and muscles.so wasn’t rehab at all!the best thing they did for me was get me this iPad which I use as an AAC communication device.text to speech.