It might seem a bit daunting but trying an online session might be a good experience.
The Stroke Association has a regular program of online events which cater for those with Aphasia.
It is run in a friendly, gentle and understanding manner. Carers are welcome too.
Your husband might find it is stimulating and supportive.
I given all those exercises such as tracing wiggly lines, letters, etc, by my OT, and needed them and got myself more off Amazon…or rather my hubby ordered them for me And yes, if his stroke hand is his dominant hand, then he wants to relearn how use it again, and to write again doesn’t he? But then putting pen to paper and just starting to try and write is also just as good
As well as @SimonInEdinburgh’s suggestions there are also puzzles like Flowfree, Hashi, Water Connect, Mahjong, even jigsaw puzzles are all good for logic, problem solving, dexterity, concentration, etc.
He’s not stupid at all, as any stroke survivor will tell you; it’s just, so few people dare to or are not able to make hospital staff aware of that fact. And it’s unfortunate that the staff don’t get to spend nearly enough time with their patients to realise this. I was in hospital during the lockdowns so had no one to speak for me. I couldn’t speak and was also losing my hearing. That would start off well at the beginning of the day but gradually petered out by the end of the day. So I can understand their dilemma when I think of how many stroke patients they see in a day. I suppose it must be as hard for staff as it is for the patients in many ways.
Thankyou for your reply . To be fair most of the nurses have been brilliant with him on the ward he is on now. Its just the odd one that talks like that. When his sister visited she said hello and he just looked at her. She looked at me and said "Can he hear me? Can he understand me? Before I could reply he said "Yes! Yes!" . When they tested his mental capacity he was getting mad when they showed him some pictures and asked him to point to the dog etc. He thought they were making out his was stupid! He’s certainly not that. They just tried to explain it was to find out what parts of the brain was affected and what he could understand.
Just thought I’d give an update. Kev has been home for two weeks. Things are going ok apart from him having a bit of a chest infection but we got on top of it early so he is on antibiotics and is fine. Most importantly he didn’t have to go back into hospital. The carers are all brilliant and we are getting into a routine. Its not easy sometimes but its great to have him home. I’ve noticed his speech is improving. He is saying a few more things each day and I have even been able to make him laugh everyday! . Physio from the community are coming to see us tomorrow. I didn’t sleep much for the first few days but thats getting better and last night was the best sleep I’d had. Just waiting to get him a chair sorted so we can get him out of bed. Occupational therapy said they will come out with a rep to see what will be suitable for him with his balance issues etc. Everythings a waiting game. Anyway, thats enough of me going on! . Hope everyone is well.
@paula123 great to hear that things are going well and that you are settling into a routine. There’s nowhere better than home to start to recuperate properly & it seems like Kev is happier there too.
Hope you get the chair sorted soon. That should help with chest infections too.
I’m sure as time goes on your sleep will improve as you worry less but do take time out for yourself too.
You were all right about the many ups and downs following a stroke . So at the moment I am sat in A&E with him. They are treating him for sepsis until they find the source of infection. Started yesterday with really bad shivering like the flu, coughing, clammy and sweating a lot. He has been more confused/agitated over the last day or two. Was thinking it was something to do with the stroke until I read its a symptom of sepsis . Hopefully he can get over this setback and come home soon .
Just thought I would update you on how things are going, He got over the sepsis pretty quick and was back home in a week! So today it is 2 months since he first came home and yesterday it was 6 months since the stroke. He is struggling with pains in his legs which are getting worse the longer he has to stay in bed and it is getting harder for the carers to get him comfortable. Still waiting for a chair for him! They came and measured him up for one and we should have it in about four weeks. On the plus side his speech has improved a lot since he came home. There are still things that I struggle to understand but from how he was six months ago it is a massive improvement. We have heard the grant has been approved for the adaptions so we are just waiting for the contractors to give us a date. After that they will be able to assess him for a wheelchair and we can get him out of the bedroom!! Can’t wait as its starting to get him down. So even though its not easy at times things are going ok. Hope everyone is well!
Thank you for sharing the update. Sounds like things are moving in the right direction & once you get the chair & adaptations I’m sure life will get that little bit easier.
Could heperhaps do a few little leg exercises on the bed to try & helpwoth the pain ? It might not be possible but was just a thought.
Really hope you get the things you need in place very soon.
Hi . Thanks for your reply . When he does let me do exercises I just do some gentle movements as much as he can stand. Sometimes its five minutes but other times he won’t let me do any . Just keep encouraging him. Trying to get on top of his pain relief at the moment xx
Hello @paula123 - I am a carer for a loved one and I have just been catching up on some of the posts on this forum to educate myself and learn from shared experiences.
I have just read your post from April 2024 and was able to relate to your experiences. I only just saw your post today as it popped up in my list articles that I have not read and I wasn’t on this forum for a long time before returning late last year and hence I am only just catching up. I hope you don’t mind, but I noticed you haven’t been back since September 2024 and wondered if everything was alright. I appreciate there may be a good reason for this, but also if there is anything else you can share with us, especially as things seemed to be going really well when you last posted.
Please do not feel obliged to respond if you so wish, but your story resonates with me and I feel maybe a few others on this forum. I think we all would like to support each other and learn from others’ experiences. Your story has been very inspiring for me to read.
Thank you for reading this and I wish you all the best.
Hi . Thank you for your message. Sorry i haven’t posted for a while. He’s been in and out of hospital a couple of times with infections which turned into sepsis. The last time was just before Xmas when the infection he had spread to his blood stream . Hes been doing well since. We have had all the adaptions done now. Just waiting for him to be measured up for a wheelchair. As you know there’s good day’s and bad days but he is improving with things like washing and drying his face when the carers come for the first call and hes just started trying to feed himself. Hes really hard on himself saying hes useless but i make sure he knows how proud i am of him. Cant believe that in a couple of weeks it will be a year since he had the stroke. What a year!!
Hi paula123 - I am so very pleased that you are able to report back with such wonderful update on Kev’s improvements. You don’t need to apologise - it is totally understandable as I expect you will have been busy with lots of things and you do need to prioritise
It is not that unusual for patients to return for a few visits post initial discharge, some of which can be down to what I call “hurried and unsafe discharges”. From what I read about your story, this is a classic fit. Having to go into respite, having to wait for adaptations etc. etc. All of this can be very stressful and does not help when you first become carers
What I am really pleased with is how Kev has improved and is trying to become indepenedent - washing and drying his face, trying to feed himself; these are all very good signs that he wants to improve and he is improving. I would like to applaud him for that and for you for encouraging him and supporting him
Please tell Kev, that I said, he really should not be hard on himself and he certainly is not useliss. On the contrary, he is a very determined individual who is doing his best to become independent. I suggest Kev signs up with this community and shares with us just exactly how he has managed to get where is today
As for you, you should not only be proud of Kev, but you should also be very proud of yourself - You are both amazing and well done.
I for one look forward to the anniversary update which we should celebrate
You need to know that you are on a long road. There is no quick fix as far as I know but you will both make progress. There will be ups and down, but sharing your progress can make you more aware of the real improvements you are experiencing.
A trouble shared is a trouble halved and this is a good place to do that. I have had very real help from others here.
Sharing your successes records just how worthwhile your efforts have been and can be inspiration for others travelling this same road.
Reminder
Taking time out isn’t wasting time. You need to rest and recuperate regularly to be fit for all this.
It is a a strain, a test, that you can manage, as long as you look after yourself and one another.
Hope you are well . Thank you for your reply . You were all a great help to me in the scary early days but I didn’t imagine I could inspire others. Now things have settled down a bit I will make sure I update you all more often both good and bad. So kev is very stubborn which can be both good and bad. If he dosent want to do anything like exercises, feeding etc he wont but when he is determined he keeps at it. He has days where he sleeps a lot but am guessing this is normal as he is learning to do things again. Anyway I promise to keep in touch more regularly.
Thankyou for your kind words. As I mentioned to Bobbi he can be very stubborn which can be a good or bad thing. If he doesn’t want to do anything like exercises or feeding etc then he won’t but if he is determined he doesn’t give up. We are starting to get him out of bed and into the living room for a while in his chair. He is building up his tolerance and can manage a couple of hours a day. The problem is that he has to use a hoist to get him from the bed to the chair and even though they are close together it terrifies him. I keep telling him if he keeps doing his leg exercises he can hopefully transfer from the bed to chair without having to use the hoist. Hopefully this is enough motivation for him. Its a battle of wills sometimes !!
I was born under Taurus, so I fully understand the stubborn thing. As you mention it can be infuriating.
I drive folk mad sometimes by just not giving up.
My motto keep on keepin’ on sums it up really.
Not giving up does get you places but it can be wearing on yourself and those around you so knowing when to rest and replace the energy is most important.
It is just three years since I had my stroke. I came home like your husband needing a lot of support. And between you and me I hated it but that is what pushed me on and step by step things did improve.
I am still disabled and need help and support but now have a better quality of life and hope for more improvements yet to come.
That transfer from bed to commode to chair and back again was one of my earliest achievements. It took a while to get there and I ended up bruised and on the floor a few times but eventually I mastered it.
The next triumph was taking a few steps with the aid of a physiotherapist. Again there was me on the floor bruised once more, but proud to be getting somewhere.
My wife was proud of me and she let me know it.
I tried to make sure she got a break from me.
It isn’t just me struggling with this.
There has been a mountain of difficulties to tackle. It has been quite an adventure. I have written a lot about it online. I’ll leave a link here if you’d like to look and save me repeating myself.
I completely understand if you have too much going on at the moment, please don’t feel obliged but do please keep coming back to the forum. It has been a great help to me and still is. I am sure you will find the same. There are some great people here and they know how things are.
Just having a place to get your ideas in order works wonders. I promise you that there is a future for you both and things will get better.
Look after one another and remember to share a laugh when you can.
When the brain wants to process or shut down and reboot, it won’t let you do anything else. A bit like a computer or mobiles when it has updates to install. So it may not necessarily be his decision. When the brain is in that frame of mind, wild horses can’t move it. Other times it can just be a matter of the brain has had enough of one particular activity and needs to move on to another or rest. It used to frustrate the hell out of me but the good news is it does get better over time Find a drop of humour in it all, learn to laugh about, that’s what got me through the early stages
Hi . Thank you for your reply. I never realised that could be the reason. Its all very complicated! He does have days when he will say no to everything, exercises, getting in his chair etc. You have helped me understand more of what he’s going through. When he has good days he is having more of a laugh and giggle with me and the carers which we all love xx
And yes, if his stroke hand is his dominant hand, then he wants to relearn how use it again, and to write again doesn’t he? But then putting pen to paper and just starting to try and write is also just as good 
. When they tested his mental capacity he was getting mad when they showed him some pictures and asked him to point to the dog etc. He thought they were making out his was stupid! He’s certainly not that. They just tried to explain it was to find out what parts of the brain was affected and what he could understand.
. Hope everyone is well.
