He does understand whats happening. They say he is fine processing basic information but we need to keep things simple. The problem is he knows what he wants to say but when its not coming out clear and we can’t understand him he gets frustrated understandably. When he refuses to do physio etc I do try and encourage him explaining that the more he can try to do the better he will feel and the easier it will be when he comes home. Thats what he wants more than anything. I think he is just getting fed up of everyone asking him to do things and being examined constantly. Yesterday physio said he was in a good mood when they saw him in the morning. He wanted to get out in his chair but by the time they got back on the ward with a special chair for him he had been taken ill again with constant coughing, low oxygen so it was back to blood tests, xrays taken again etc. My nieces friend is a nurse and happened to be looking after him last night and got him smiling and laughing! . Physio have spoken to a psychologist from the stroke unit and they are going to keep an eye on his moods and see if there is anything in particular that triggers his mood swings. Will see how he is today when I visit. I never know what to expect . Thanks again for replying.
But he is a grown man Simon not a 2 year old, And just maybe he wants to be treated that way, and if he does then he should be prepared to take the bad with the good. And my opinion is only based on all that Paula has said about her partner in these posts.
And this last post from her just clarifies, to me anyway, that he has the mental capacity to recognise his bad behaviour, feel remorse and can apologise for his behaviour to his partner. But I’m not an expert, just a fellow stroke survivor.
So he is a grown man and the last thing he needs is to be pitied or excused and treated with kid gloves. Whatever is his current mental capacity is, he’s not stupid, he’s frustrated and p’d off that he’s back stuck in hospital and there’s nothing he can do about it. But that doesn’t mean he can take all his anger and frustrations out on Paula and the staff. Paula also needs to look after her own mental health in all this and protect it.
There’s absolutely nothing wrong with being pulled up or reprimanded for bad behaviour no matter your mental capacity. How else would a baby learn right from in if no ever told them. The brain still needs to be re-trained, to re-learn, be reminded, reawakened if it can. So, to not try to correct bad behaviour would be same as you not bothering to do anything to regain the use of your stroke arm/hand.
Just an update and some advice if anyone has any. Kev is ready to be discharged from hospital. The big issue is trying to find the carers he needs. He is still in hospital at the moment but social services are telling me that at some point the only option is to go into respite care until they can be found and said it will be weeks rather than days. The problem is I know him better than anyone and he is so against going to a care home even temporarily that I know that having suffered depression most of his adult life he will completely shutdown and his health will deteriorate putting him back in hospital and back to square one. Occupational therapy have also sent a report to social services stating that its also their opinion that he will not be able to cope in a care home environment. My question is can social services force him to go into respite against both our wishes and against the recommendation of occuptional therapy. I have been coping quite well with everything up to now but this is just to much pressure! His sister tried speaking to the social on my behalf but they wont talk to her as I am his next of kin and they will only talk to one member of the family. Yet again its all on me!
I don’t know the “legal” answer but I guess ultimately no one can force you. You would need to be sure that by going against their recommendation that you aren’t risking losing the carers when they find them. I know of someone who opted to pay privately for carers so their dad could come home rather than go to a care home & then when they went back to find out when the carers would be arriving through social services they were told they had been cancelled as they’d gone private. This might vary by local authority but worth checking out.
Once people are no longer receiving medical care the hospitals need to move them either home or into respite / rehab so they can treat others who need the medical care. This is where we could do with the cottage hospitals back.
I hope you get something sorted that is suitable for you both.
Thankyou for that. We certainly don’t want to risk getting carers as its so hard as it is . After calming down and talking to family as much as we will try and keep him out of respite we may not have an option. I understand there is a waiting list for carers but some people will cope better than others in care homes and my priority will always be his wellbeing mentally as well as physically . If he does go into respite i will be keeping a close eye on him and praying it won’t be too long until carers are found. We both just need him home
Hi. Just wanted to update you . Just had the news his care package is in place and he is coming home on Tuesday!! He has been very tearful over the last few days but today they were happy tears! I know its going to be hard work and I will probably be terrified the first night on my own with him but the sooner we get into a routine the better. I feel like a massive weight has been lifted! Xx
I’ve just read back through all of your posts/updates. Wonderful news that Kev is able to come home! Remember we’re all here for you with advice/support/ a listening ear. I have found the online activities a lot of fun and that might be something Kev can work up to. It took me a long time to pluck up the courage to join them but I absolutely wish I had joined them sooner. It’s so nice to hear other people’s stories and know that you’re not alone.
Thankyou. As people have mentioned and I have found out myself there are so many ups and downs and I am sure these will continue for a while yet but I am so grateful for the support from everyone in this group who knows what we are going through.
That is good news, I’m so pleased for your both and be glad of his tears, as that’s another something you know his stroke hasn’t taken away from him…his ability to feel emotion Always look for the positives
And there will be trepidation for both of you until you settle into the new norm. We are all here, there’s always someone around here even in the middle of the night. That’s usually the worst time of day, for both of you, to worry yourself senseless and depriving you of sleep. So there’s nothing wrong with just coming on here in the middle of the night to have a little purge of what’s keeping you awake Maybe get Kev on here himself if/when he’s able as it might help to raise his spirits and confidence in his own recovery by reading other’s progress on here.
Onwards and upwards
Thats good to know. I’m sure kev will get a lot more sleep than me at first
The social worker told me to make the most of these few days before he comes home. He will be home just before my birthday. Best present ever!
It’s a bit like bringing home a new born baby for first time. It’s both exciting and scary and takes time and sleepless nights before you settle into new routine. Just not as easy carry around a fully grown man
I mean both. If I hadn’t joined the online activities, I wouldn’t have heard about the forum. If I hadn’t then come on the forum I wouldn’t have heard about the Thursday cafe. If it wasn’t for the Thursday cafe I wouldn’t have learnt about the Facebook chat group. I’ve found them all useful
And breath
If I just tag @BakersBunny, Simon’s wife and @HHilary, Bobbi’s wife in here, they might come by tomorrow to shed a little light from a careers perspective to those first few nights But your biggest worry is going to be that he could have another stroke. That’s natural and we all have been through it and live to tell the tale It does get easier as time goes on and he makes more progress. In the mean time try to relax and look forward to his homecoming and I wish you both the best
Hi. Me again! . I am learning things every day. I was thinking today how he is doing exercises with physio for his arms, legs and balance but I was wondering if there was anything I could do to help his cognitive problems so “asked google” if word puzzles help with stroke recovery and came across a few stroke recovery activity books for traumatic brain injury and asphasia which is what he has. I have ordered a couple and wondered if anyone has used these and found them helpful. I said we could do a little bit together each day and he agreed but am worried when he sees the exercises like tracing letters of the alphabet etc he will think I am saying he is stupid even though I have explained its just helping his brain heal. He has had experience of people including doctors and recently a social worker talking slowly and loudly to him like he is either deaf or a two year old!! It really winds him up.
. Physio have spoken to a psychologist from the stroke unit and they are going to keep an eye on his moods and see if there is anything in particular that triggers his mood swings. Will see how he is today when I visit. I never know what to expect 
. Thanks again for replying.
Always look for the positives 
Maybe get Kev on here himself if/when he’s able as it might help to raise his spirits and confidence in his own recovery by reading other’s progress on here. 
. I feel over the moon, terrified, emotional. All of the above!!