Hi my husband Stuart has been home 5 weeks now 14 weeks after his stroke his motivation is really good he does a lot of things now at home. Small things but I’m amazed as he still has all these fractures. His dyspraxia and aphasia is still not there but he is saying things and some short sentences. He’s having private speech therapy 3 times a week as there is still nothing from the NHS they don’t have availability. I feel so sad for the people that don’t have the funds to pay. He now has a hernia but it’s the stomach wall that’s lost muscle he’s suffering terrible still going to the loo most of the night. I’m now going private to see a urologist. I may be down to the stroke only but I’m so worried. Being a carer is frightening as I’m watching for anything going wrong all the time. It’s a very lonely life and I know it okwill get better but his fatigue and night peeing is holding him back. I’m still waiting for the outcome of the investigation into why they did the procedure that brought on the stroke. Thank you for listening.
Hello, I’m so sorry to hear about your husband’s stroke. Caring for a stroke survivor is such a challenging journey, and the emotional toll affects both survivors and carers differently. Surviving and recovering from my stroke was exhausting and emotionally draining for my family and friends. While each recovery unfolds in its own unique way, what I’ve found here, is that sharing experiences and hard-won wisdom—the real understanding and practical tips—makes the journey a little less lonely and providing a torch to navigate through unexpected terrain.
Thank you it means a lot
I wouldn’t say it’s holding him back, in my book its there to prevent him from doing too much. So at the moment he’s doing as much as his brain can cope with. Too much could risk another stroke.
He’s only 14 weeks, it takes 6 months for the brain to heal. His brain is running at a much reduced service while it mops up and makes repairs to his brain, wherever it can. And then it has relearn certain functions both internal as well as external. Just because you can’t see it doesn’t mean nothing is happening.
A stroke is like a major, life threatening injury. And again, just because you can’t see the wound, there’s no bandages, doesn’t mean it’s not there. And for your husband there was a heck of a lot more healing going on aside from stroke wasn’t there!?
It took me a good year to get back to walking normally and at full strength after my hip replacement years ago. The brain however, also has to continue all functionality to the rest of the body not affected by the stroke. All whilst doing this healing and repair work. And it’s exhausting!
Unfortunately this is a marathon for us, not a race. I am 5 years post and I still have mild aphasia. And my stroke was mild in comparison to many on here. For me, I found the speech the most fatiguing of all. Because there’s a lot more to it than just getting words out of your mouth, such as compiling the words in your head, just for starters. And that’s just one part of the whole process, even getting to tongue to coordinate with voice box. It takes a lot of thought, planning and processing to get the words out. But he will get better and better at it over the coming months. So don’t be disheartened. It’s just that the brain has to prioritise the order in which it heals. You don’t need your voice to survive so to speak.
Lorraine
Hopefully his hernia is not too uncomfortable. I believe they can be gently massaged and popped back in. I am to understand that smaller stomach hernias are not necessarily detrimental to one’s health. My partner has one. I had an inguinal hernia when I was in my twenties and that required surgery, but it was fairly routine. It’s always worthwhile checking up with a specialist, but I think you’ll find whole threads on desperate peeing on this forum 
I never had a, completely, reliable bladder before stroke, but after it was completely unpredictable.
I echo @EmeraldEyes with fatigue. It isn’t holding him back, it is there to put the brakes on too much too soon.
Hi @Lynne26 it sounds like Stuart is doing well at this stage of his recovery. Great to hear he is motivated as that will help a lot through the coming weeks/ months.
It is tough being a carer as you are expected to deal with everything. Do you have any support at all? Speak to your GP about being a carer they can offer support. Try not to worry too much. A lot of what he is going through seems relatively normal and should improve in time. Hopefully the urologist can help with his excessive toilet visits. Do these just happen at night? I wonder if he would be able to do some pelvic floor exercises which may help?
Wishing you both all the best.
Ann
He is doing better. It’s the overnight toilet trips got us both shattered. I go with him as he can be dizzy I’m terrified he falls. Yes they offered me carers but they wanted to come 7.30 or 11am. I can’t get him to wake up to order. 7.30 was too early and 11 was too late. So I just do it. He can shower himself get dressed I just supervise him. Then I get his breakfast they won’t help him down the stairs in case he falls so it’s useless.
It’s just a long lonely road. My daughter lives near and she helps with me at weekends for me to go shopping as I can’t leave him.
Thank you for your time. X
That’s the biggest issue with carers you have to have them at times to suit them not you. Is it that you are terrified of him falling or is there a real risk that he will? I was very wobbly after my stroke and hubby didn’t like to leave me but slowly but surely I got him to let me try going to the toilet on my own and for the vast majority of the time I could wobble there and back without falling. I used the walls as support. Maybe you could try, if appropriate, letting him try without you watching over him. I still suffer with dizziness but have adapted to it over time. As a carer it is very important you look after yourself too. You can’t continue to get up all the time in the night and then look after him all day too. Could he perhaps use a stick, a rollator or something to steady him which would ease your worries as well?
In the early days after my stroke my husband didn’t want to leave me but after a few weeks he had to go back to work. So he set things up so I didn’t have to move around much and he’d pop back in the day to check on me. For example he get me a flask, a mug so I could have a drink, he put the telephone right next to me in case I got into bother and left me the tv remote etc. it was very scary for both of us initially but after a while, when we realised I was ok, it became easier and he left me for longer.
You say Stuart is able to do a few things around the home so he might be ok to be left for a little bit if you can bring yourself to try it.
It is tough and very scary but the only way to get past it is to try it. Just gradually a few mins here and there, then build that time up.
Hope things settle soon.
Ann
I think forced independence, when able and safe, is a benefit after stroke. Reliance can be like learned non-use, and getting to grips with being alone can help the brain strategise what it needs to overcome in order to regain that independence. I live alone now and am always surprised, even though I struggle at times, what I can achieve by myself now. My partner will help anytime, or most times, I need her but on the whole I avoid that lazy brain syndrome where it is easier to have help than help myself. Now, when I do get help it is a luxury I can indulge in rather than being a necessity I could do without.
There is a lot in that @Rups If I tried to do things hubby would intervene at times if I was too slow. It used to annoy me a bit as I kept telling him I will never learn to do it myself again if you don’t let me try. Of course there is a balance to maintain to ensure it is safe to try.
I will try to let him go to the toilet on his own my house is not easily geared up for it. Our bedroom is on the top floor 3storey house the bedroom is separate and across the small landing is stairs across from the bedroom is the bathroom. I’m so worried he’s dizzy and falls down the stairs. He couldn’t take another fall. He gets so annoyed when I can’t understand what he’s saying some of it I can get then I say let’s try later just rest now. But I can see he’s so frustrated. He just did it and I sat back down he got up sat with me tried to say sorry and cried it’s awful to watch it’s tearing me apart. He’s such a gentle soul always looked after all of us. Hopefully one day I can get him back to talking more. I started a journal when he went to rehab and wrote every day in it. The first 5 weeks were so upsetting but I have seen the massive inroads he’s made that keeps me going.
I can empathise and I echo pretty much everything that others have said. There is some excellent suggestions as always.
Wrt carers, there should be more than one agency on offer and they actually should work the hours you want not what they want i.e. it’s your care plan and care needs they have to meet and get paid for. The agency that is offering the times are not suitable for you may be short-staffed or small and so can’t find staff to suit your requirement.
Our carers are “managed”/sourced through the council and they advertise on some brokerage stating the requirements. So in our case we require 4 x double up carers at 8am, 12pm, 4pm and 8 pm. The agency that responds has to be able to meet this otherwise they can’t tender for the business.
The only downside is as you say it still does not mean this works, because as you say stroke survivors do not follow fixed schedules.
We get by with this arrangement and sometimes the carers can’t do the call as Mum is not ready or wanting to do things at the time they come, but for us it is helpful as Mum is heavily dependent and it’s also double up.
Wishing you and your husband all the best.
Namaste|
I’m so sorry the care you were offered was so inflexible. Mine were great, and really respected how I wanted to do things, but I stopped having them after about 3 months at home as I being ‘ready’ for them was causing me more stress than getting up at a time that my body and brain can cope with taking 2 hrs to get dressed at my own pace.
Sending you both lots of love. 
Could you perhaps put a stair gate at top of stairs which would help stop him tumbling down stairs if he became dizzy on way to bathroom? What about a stair lift to help him up & down the stairs? Did you ever have someone come & look at the house to see what adaptations might be needed to make things more manageable for you both? If not request one through Adult Social Services.
I am sure this is all heartbreaking for you but it is good that you can see theprogresshe has made. I kept a diary too and it really did help with seeing how far I had come because you often can’t see it yourself or in the moment.
You will have many ups and downs along tye recovery road and it is a long game but as time moves forward things should start to get that bit easy. You will find ways to adapt.
Best wishes
Ann
To begin with Hilary and I got a second hand mobile phone each.
It acted as a sort of 'baby alarm and let us have some reassurance without needing to be in sight of one another all the time.
We still use the same means of contact during each day.
I still worry Hilary but I try to reassure her and she does allow me to explore my independence.
Four years ago I came home, from the stroke ward at the hospital, bed and chair bound.
I haven’t made the same gains that others have but can get about the house a bit. I have occasionally ended up on the floor but I write that off as part of my journey.
Sometimes, Hilary, my wife and carer is worn out and I try to encourage her to take break.
Life goes on and somehow we manage even to have a little fun. Though we also quarrel. The best part is making up.
Best wishes to you and your husband. This forum is a great place to share your experiences, ups and downs. Be sure to make good use of it. The folk here know what you are talking about. They are good listeners and even have a useful suggestion to offer sometimes as well.
keep on keepin on
Thank you
The occupational health from the hospital did a view of the house. I explained my worry about the stairs she said he was fine in his feet and a baby gate would be worse he would fall over it. I put plug in lights on the landing and in the bedroom and a night light in the bathroom and an alarm on the bedroom door. I also put a camera in there but I can’t come downstairs yet as I’m too frightened. They put another handrail up both flights which helps a lot. I wanted a chair life and they said he is very capable and I would make him disabled and he is not. I also wanted a rise and fall chair to help him and they also said no they said if he doesn’t use it he will lose it.
I’m so worried about falls I’m a nervous wreck.
He gets angry sometimes and has a go at me and twice I’ve snapped back and felt terrible as I know he can’t help it it’s just not him.
He sleeps straight after breakfast and then he seems a bit better. I’ve upped the speech therapy to 3 times a week but for 45 min as an hour was too long.
He’s 14 weeks post stroke it’s just the fatigue a d speech not working yet. Although he does say some things.
Thank you for listening
Lynne
Have you tried two cans of rinsed baked beans and a length of yarn?
@Lynne26 I think that’s a bit naughty of occupational health. I agree with some of what they say but it isn’t them having to manage the situation on a daily basis. Now you have some lived experience that you can call on then maybe it is time to go back to them and explain that it is causing you real difficulties and you need some of this equipment to help both of you.
Somehow you need to try and get a handle on your anxiety. Some of this is a time thing and as he gets stronger it will ease. But some of it is you needing to find ways to cope and reduce the anxiety. Has he had any falls since being home? If he hasn’t then try and focus on that. Try and leave him that little bit longer before stepping in to help. It will be better for him and you too. Over time just gradually increase that time. Don’t feel bad about snapping back at him sometimes. You are both trying to find your way through a life changing event. It has turned both your lives upside down. But, as all of us on here can vouch for, that doesn’t mean it won’t improve again in time. But it does take time. Things may never quite be the same but they can be good. 14 weeks post stroke really is still early days. If he is doing some things he really is doing well. 14 weeks post stroke I could do very little as I was so dizzy I could barely stand up. But I’m in a different place now and so will you both be. Please try not to worry so much (I know that is easy for me to say). You have to trust that he is going to be ok. Most of us fall at some time in our lives even without having had a stroke. If you don’t get your anxiety under control you will be poorly yourself and then you won’t be able to help him at all.
Best wishes
Ann
Don’t know if I’ve asked you this before but have you both considered joining an aphasia group if there is one local to you. They run by the Stroke Association and I’m sure @Anna_Moderator would be able to point you in the right direction.
Joining mine was the biggest boost to my confidence in getting me talking again. You both learn, you contribute, you compare and share along side fellow survivors. Above all you don’t feel so alone and isolated. And the most valuable thing you can both get out of it is a whole lot of new friends who have no qualms about your speech or condition, we are all the same.
Lorraine
Thank you so much you are so right in what you are saying.
We’ve had the best day today since he came home he started dinner put the potatoes in a pan and even noticed they were drying out so put more water in. He put the fish in the oven and set the table. He even poured us both a glass of wine only small ones he has only had about 3 glasses since he came home. I’m really worried it makes him dizzy but I think he’s trying to put some normality into life. The speech therapist said he had the best day today but after he has to sleep for about an hour to refresh. His speech today has been a little better but still incoherent but I’m told it’s early days. The SLT comes 3 times a week for 45 minutes each session 1 hour was too much. I’m just praying there will be more today’s. The doctor has referred me to counselling and some low dose pills. I’m going to hold on to the pills for now and hope the counselling helps first. I know things will never be the same but I’m hoping we can get somewhere near it I get so much inspiration from these chat groups as you feel so all alone.