Thanks Simon, si loves jigsaws and Lego so I’m going to try them. I got a video messsge sent from Nisha Kationa, the chef, as si and me love our cooking shows. I didn’t get the response I wanted really as he looks so fed up, but I’m hoping once he’s out of the side room and even still out of the hospital he’ll pick up xx
Hi @NickyEvr just popped in to welcome you to the forum. I’m so sorry for what your husband and you all have been through, he’s been through a lot
Recovery from stroke certainly can’t be rushed, we’ve all learnt that the hard way. It’s a marathon not a race, 2 steps forward, 1 step back is always the way. He’ll be down today, up tomorrow as you all will be for a while yet. You are all in shock and grieving, that’s par for the course, but know that he can recover a lot. He’s still young enough and clearly has enough fight in him to beat this.
To me it sounds as if he’s extremely bored and probably frustrated by the fact he can’t actually do anything himself about it. That’s enough to get anyone down after 5 weeks in hospital tethered to a bed!
I was just in 5 days and climbing the walls . . . well actually I started using that over the bed wheely table to shunt myself down the ward to another lady to hear her better. That didn’t go down too well with the nurses but hey-ho when needs must
I couldn’t speak either, aphasia, plus we were still in the covid lockdown so no family to speak or ask questions for me. So I can hazard a pretty good guess as to what state of mind your husband is in psychologically. His various medications will also have an effect on his moods; its all a bit of an emotional rollercoaster ride so do bare that in mind. When he’s down, don’t lose heart, the next day is always a different story
To be honest, I’m surprised the nurses say they’re worried about that at this point. To me that’s always been a good sign that he is on the mend and certainly a positive sign for the condition of his brain. He needs a little more stimulation; ideally he wants out of hospital and back doing what he loves but that’s not going to happen any time soon. You are going to have to get creative but bear in mind interest will only be in short bursts because the brain gets tired very quickly
Hi All just wanted to give an update on Si as you’ve all be so kind with your advice and words of comfort. The other day I decided whilst I was visiting him to write “yes” and “no” on pieces of card. When I asked him a question, I asked him did he understand me, he pointed to “yes”!!! Ever since we have been using them as have the medical staff, we have found out he has been in pain at times, I asked him if he understood and knew what had happened to him, he pointed to “no”, I asked “do you want me to tell you?” He pointed to “yes”. I told him his story and when I mentioned the first doctor on that dreadful Saturday the day after it happened and what he told me, si burst into tears. I then told him how far he’d come and how well he was doing, I asked him “are you coming home si?” He pointed to “yes” . He has been having physio and being put on the board that turns into a chair, his head positioning is becoming stronger and he can turn his head from left to right unsupported after being slumped to the right for almost 6 weeks. The nurse shaved him the other day and he coughed, she cut him as the razor slipped. She’s so lovely and said to si “what do you think of my shaving si?” He put the middle finger up to her and smiled the biggest smile, we all literally burst into tears of joy. He is definitely fed up and wants out of there, he can definitely read and looks at the clock when visitors are coming and going. His oxygen levels are around 94%~95% which worries me but they’ve said it’s because of the covid and his positioning in the bed. Anyway I’m praying for another good weekend and week ahead and hope the rehab centre isn’t far away now xx
Great to read the update. Sounds very much like he is progressing which is all you can ask for. He clearly has his sense of humour still which is a great thing. Sounds like he has the fight he needs in him.
Here’s to further improvements & we look forward to hearing about them.
Best wishes
Ann xx
Hi all, just wanted to ask you guys something. Si is trying to talk, he makes loud noises, is mimicking sounds such as when I say “love you” he does a similar sound. Today and yesterday he has been absolutely exhausted and alseep for a lot of my visit. Would this energy he’s using make him so wiped out. He has also had lots of physio this week, nothing this weekend. His obs are good, around 95% oxygen and pulse is around 89 so I don’t think it’s an infection but I’m just so worried why he’s so tired all of a sudden xx
That sounds like he’s done quite a lot this week & it is very possible that has exhausted him.
When I first had my stroke even just talking one sentence made me feel awful & I slept loads in the first few weeks / months.
Oh god @NickyEvr your story has made my day, I am so happy for you both I could cry I just knew he was still in there Because I’ve been there, and if my hubby could have visited he would have done just the same with the Yes/No cards. It’s a shame the hospital staff never think of this.
And yes, as the others have already said, the exhaustion is just par for the course. And encourage him to speak as much gobbledygook as he can, and don’t let him get self conscious about it. Its the only way to get his speech back, and he will get it back, I did!
Oh I’m so happy and excited for you both, never give up
Hi all, I just wanted to give you all a update of where we are. I’m sorry I’ve been MIA for a while. There’s quite a lot to go through. I have last week made several official complaints to the pals service at the hospital and the chief exec. All surrounding Si’s lack of speech therapy…none for 10 days, lack of water, and problems with the feed he is receiving via the peg. We had a meeting with the therapists and clinical lead on Friday and I felt things would be improved from tomorrow. However over the weekend I have visited to see that so had been given only 900ml of water in 17 hours with acute diarrhoea.
He is due to start swallow trials tomorrow.
I have been told by pretty much all of the doctors and therapists it’s very unlikely si will ever walk or talk again and will require care for the rest of his life…my husband who only 10 weeks ago was up a ladder panting and repairing guttering is reduced to being in a bed all day, can’t talk, doubly incontinent and can’t eat or drink…my world literally has fell apart. The team have said that he still can be on the transfer list for the rehab centre but they feel he still medically requires their care. They said it is one of the biggest strokes they have ever dealt with and I have lost all hope of him talking to me and being able to walk, I am broken. My mother in law has bought a new acoustic guitar and they are taking that in to si today as my father in law will play him tunes, I have researched the singing therapy may help si. I was just wondering with all your experience, we are ten weeks into this stroke, is it unlikely he’ll talk? The walking so much doesn’t bother me but him being able to talk to me and his children would be everything to us. Thankyou as always for your help and support as I navigate the living nightmare I am in xx
@NickyEvr it must be so hard for you & getting your head around everything that has happened will take some doing. The medical professionals have to be honest with you but I would say there is always hope. 10 weeks is extremely early in recovery terms & you need to take everything one day at a time.
I was reading a post on Facebook the other day where someone had been told they would never get out of bed again but they are now walking. It’s taken 4 years but they have defied the odds & done it.
If the medics are saying he still needs medical care then hospital is the best place for him right now. They will soon look at rehab when he no longer needs medical care.
Keep talking to him. Encourage him to try & respond even if that’s just a noise. It’ll all help.
Best wishes to you all.
Ann xx