Long story, but I need to get it off my chest and I’d love some help and advice on what to do.
Early Sept my dad (83) had an Ischaemic stroke and was in A&E under an hour afterwards. They treated him with thrombolysis and initially it looked like it was working.
Then suddenly he had an allergic reaction and had to have adrenaline to counteract it. At the same time and possibly caused by this he had a haemorrhagic stroke in the Pons area. Absolutely devastatingly bad luck.
He has total loss of mobility and feeling on his right side. His speech was badly affected but it’s improving well. He is aware of what’s going on and understands what is said to him. 4 weeks on he’s still being fed by nasal tube and they say his swallowing is not there yet but is getting better. He’s very angry and emotional about his situation and often says “what am I going to do” and gets sad and upset a lot when we visit.
My mum is a bowel cancer survivor with a stoma who really relied on his moral support on a daily basis as she had a lot of stoma issues and anxieties about it.
Yesterday there was a team meeting with the medical team who gave a pretty bleak assessment of dad’s recovery. He’s likely to be unable to walk, and as a result will need catheter and nappies the rest of his life, as well as a wheelchair. It’s not set in stone but that’s the impression they have to date.
It’s absolutely awful. I’m worried about dad and what his quality of life will be, and I’m worried about mum who will have to bear the brunt of the caring responsibilities.
I just wanted to pop along and welcome you to the community. I’m sorry to hear about your dads stroke, that sounds like a tough situation for you all.
I’m sure there will be more people along to offer their experiences on this, which I hope will be helpful for you.
Please know that you can always call our Stroke Support Helpline:0303 3033 100 they will be able to answer some of your questions and can also be a listening ear in what can be a challenging time for you all.
If you need anything else whilst you’re using the Online Community please don’t hesitate to tag me using the @ symbol.
@nbanbury Hi & welcome to the community. So sorry to hear of your dad’s strokes. It sounds like he’s been hit pretty hard with it. The medical team have to tell you the warys & all version of things as you need to be prepared for all eventualities. As many of us show though things can & do improve. It takes a lot of hard work, determination & patience though. Your dad has made some progress already so hopefully that will continue.
It’s very early days yet & you’ll all still be taking everything in. Give yourself time & things will start to become clearer.
When the time is right you may need to look at a care package for your mum & dad. Sounds like they’ll both need a bit of help. The OTs / hospital etc can advise on this.
You can also have adaptations made to the home if necessary.
My advice for now is take 1 day at a time. There is life after stroke. You won’t see it right now & it may be different but can still be good.
Thank you everyone for your kind and supportive words. Each day at a time is the only way really. It’s hard not to spiral until scenarios in the future but I’ll try to rein that in!
I saw dad this evening and the visit was OK, and during it he was asking about things he can do to help speed up his recovery whilst he’s bored out of his mind in bed. Are there any resources available which I can print out to show him on my next visit? He’s got a few physio exercises but anything else that’s relevant would be great.
Of course I’ve also asked the therapy team for this too, but I think some simple to understand print outs might be really good.
We can try him with an ipad for sure. Focus areas would be right arm and leg.
He has “flickers” of muscle activity in his right shoulder and elbow but can’t move his hand. Also can’t move his right leg independently but can join in with exercises if the therapist move it for him.
Not sure whether it will be any good or not but i had a stess ball that i tried to squeeze. The one i had had eyes that popped out & once I got them to.pop out I knew I was making progress. I also tried colouring in & putting pegs on side of a tub.
Perhaps things like dot to dots might be ok.
Maybe something like this book?
Don’t know his level of capability so my suggestions might not help but worth a look.
Thank you @Mrs5K ! That book looks like it could be good.
And thank you @SimonInEdinburgh I’ll try to craft a more detailed and specific needs post ASAP.
He was very grumpy today, he’d been sick in the night and slept badly, and overall is really struggling with his plight today, the poor man. We’re going back later which will hopefully be a bit better.
Thanks @Mrs5K. Last night was much better as he was asleep for most of it. We think he needed it so we didn’t force him awake just to see us although he did acknowledge we were there.
I’ll keep sharing stuff here, thanks to everyone for responding.
Unfortunately Dad has now caught an infection, seemingly caused by an internal bleed which they are going to diagnose today with an endoscopy. He had black vomit and stools and is now in a very feverish state. I feel so sorry for him, he was such an active and gentle man who doesn’t deserve this. I am not religious but if I was I’d be praying for him. I dunno if it’s best for him to pull through or not. Very upsetting.
He’s back to NBM and on antibiotics. And I thought things were bad 3 days ago. Sheesh.
Thank you for once again posting here, @SimonInEdinburgh . Really appreciate it.
The doc saw him today with my Mum present and the antibiotics are kicking in so they decided not to do an endoscopy at this stage, as it would be just another distressful intervention for him. They are going to give him a chest X-Ray but the doc says it’s precautionary.
The ward team have been brilliant, can’t fault any of them.
PS - I am also in Edinburgh! My dad is in hospital in Stockport at Stepping Hill though. So I’m doing a lot of driving up and down the M6
Hi all - just wanted to update you as I’ve not done so for a few weeks.
Thankfully the infection he had cleared up nicely. He’s still in hospital and will be for some time still, but there is improvement in a few areas:
Speech: he’s easier to understand now but still has some tongue movements which are unusual due to the stroke. But overall he’s pretty easy to understand, although speaks quieter than he used to (is this common?).
Movement: his right side is showing signs of life. He can lift is right leg off the bed on his own, and bend it at the knee somewhat. Takes a lot of effort but it’s good progress. His right arm is still pretty inert but he does have some shoulder engagement so that will hopefully continue. In terms of standing up he can only do this with the help of a physio team using the Mo Lift but since I saw him the fact he can do it at all is good.
Toilet area (!) : He still has a catheter and “nappy” but he says he does feel when there is movement down there so I am hopeful some more control of that will come so that he could use a commode down the line.
Eating: he is no longer being fed via a nasal tube and can have solid food (albeit minced up), as well as unlimited fluids as long as there is thickener in them.
Mood: He is no longer crying and raging and his mood is much more stable. When he is grumpy, it’s usually because he feels like he hasn’t had any attention from the therapy team - which he often has but just forgets it. He also had some bad sleep over a couple of nights which added to his intermittent bad mood. The doc has prescribed a sleeping tablet for him which is definitely helping.
Memory: short term is still affected but it seems better than it was. For example he remembers things that happened yesterday if prompted.
He does complain that he wants to “DO” stuff still, and that he’s bored. Unfortunately the only real stimulus he can get at the moment is audio, as his eyesight was affected by the stroke, plus by his own admission he has a short attention span. So we have an ipad playing the radio constantly, with headphones attached, so he can listen to that when he feels like it. Putting the headphones on with 1 hand is a struggle, but I tell him it’s all part of the therapy…
So overall there has been some progress, it’s just very slow as expected.
@nbanbury that all sounds really positive and whilst there is still someway to go the fact that he is progressing in all those areas must be a real boost for you.
Stroke recovery does take a long time and there will be frustrations along the way. Celebrate each and every win however small.
His stroke was only in early Sept so if he’s come that far in those few weeks imagine where he might get in 6 months.