What am i doing wrong

Ok what am i doing wrong read on here people learning to walk going to rehab after they strokes . My husband had nowt in fact he gone backwards we nearly 2 years this Christmas eve since his stroke still bedboud still got be hoisting in out of bed cant go to the toilets got use pads
Had to laugh the other day he had hospital appointment when i took him there the nurse said right colin we going messure you for a walker frame so put your build up shoes on and lets get out of the wheelchair omg if i did that poor sod got it full whack
Build up shoes ya that was last may did anything happened after that hell no did he get any rehad hell no did he get a visit for physio hell no but it ok cause i work 30 hours a week with 16 plus kids who have adhd or behaviour problems than to come home look after my fella oh and help him with his physo
I can scream sometimes
So what hell am i doing wrong
Why have i been punished
Why has he been punished


Shwmae @teresa_rockley, I am sorry to hear you are having a rough ride of it, caring is tough at the best of times. Every stroke survivor will progress at their own pace. It depends on so many factors, including the type of stroke, how large the damage, where the damage was &c, I am two years post stroke, have been exercising my issues everyday, and I am nowhere near completely functional. I have a five year goal to get at least level to where I want to be.

The main advantage with professional physio is that it is informed and monitored. Most physio can take place at home but it has to be repetitive and focussed. The brain needs to reroute pathways to find alternative ways of doing stuff and light up dormant neurotransmitters, so they can pass information on to the rest of the body. Lots of our community members will provide excellent advice I am sure.

Please don’t be hard on yourself, and try not to project his progress onto you. You sound like you have a very busy life and need all the energy you can muster.

Hi everyone! Hope you are all doing good. My husband had his stoke at 45 and that was a couple days of years ago and his after care was disgusting the nurse used to say to him how much do you weigh and we never knew because we don’t have scales in the house simply because we don’t need them but the aftercare nurse said get some for next time I come and visit and I sat in on the the next visit and told her to bring her on scales and she never once told us about post stroke seizures never told us this might happen so now he’s had 4 seizures due to stroke and was not told this could happen so to see this has just made things harder I thought he was having another stroke and the sad thing is this stroke could have been avoided because they picked up a heart murmur about something totally different and he was free to leave hospital knowing he had heart murmur no further treatment needed we thought so now life is miserable and it could have not happened if the the hospital or doctors gave us advice about the heart murmur sorry for long moan but it’s sad every day as you will all know on this forum how stroke affects people and it’s the moods he get into and he’s really snapping at me do any other care givers just feel so tired and cry at the end of the day and now I have the worry about him having a seizure.x and people who think they are doing something wrong are absolutely nit it’s hard word emotional and very draining x

@teresa_rockley so.sorry to hear you’re going through a rough time of it i echo what @Rups has said about progress being different fir everyone.
Have you tried speaking to GP to see if you can get some physio for your husband? It may also be worth searching onlihe for things you could try at home too.
Please don’t berate yourself. Caring for someone is damned hard & your should be proud of what you’re doing. Not everyone can or would do it. You do need to look after yourself too though. Are there people that can help out so you can take some time out?
Have you had a care assessment for your husband ? If not it may be worth looking into.
Above all look after yourself. You’re doing an amazing thing.
Sending best wishes.
Ann x

@Sunshine2 welcome to the forum but sorry to hear your husband had a stroke. The standard of aftercare following stroke does seem to be very hit & miss & we all have to fight for things at a time when we least feel up to it.
Caring for someone is exhausting, tiring & very emotional. I was a part time carer for my dad when he was terminally ill. It was one of hardest things I’ve ever done & like you I’d have tears when i was away from dad. I told myself that he couldn’t help being snappy…it was the condition not him.
Do you have any carer support groups locally? Might be worth reaching out to them. Also you need to take time out for yourself. It’s really important even if its just an hour having a coffee with friends.
Sending you my very best wishes.

Ann xx

Teresa, you are not doing anything wrong. Recovery relies a lot on grit and willpower on the part of the person who has had the stroke. All you can do is encourage him to take small steps forward and praise him when he succeeds. Please look after yourself too. You have a very testing job and need space for yourself.

Thanks so much for the kind words… I don’t have any support from anyone we was doing okay until he had his first seizure which we was not told about these and when he had his first seizure which lasted over 30 minutes was such a shock as I thought he was having another stroke as no one said these could happen and every day is such a worry I’m struggling with the stress of the seizures … thanks for the message and you take care my lovely. X

I think there is a lot of luck (good and bad - still blame having a stroke in the first place on bad luck) in how much you recover and in what services you get from professionals. It must be such a strain caring for your husband if he is severely impaired by the stroke and has additional problems. I hope that you can both get some help for this.

@Sunshine2 has he been given any meds for his seizures? It may be worth asking. Seizures can happen after stroke but not everyone will get them. I don’t think it was ever mentioned to me as something that may happen…perhaps as they don’t want to add to worries. Do discuss your concerns with your GP / stroke nurse.
Wishing you all the best.

Ann xx

I am strokes and just been seizure from stroke doc too so I can feel for you and your husband xx

Hi sunshine 2
My fella as seizures he on medication and it not that bad now i was worried first of all thought he was having another stroke
His last one was april nothing since
My lad goes though mood swings
Sorry you going though it as well
When i wrote the post other day i hit rock bottom like i said i teach kids with adhd and behaviour problems than to cme home see my hubby in bed helpless it frustrating for him for me
But one thing i am truly grateful for is this site and the people on here
No judgement just pure help and support
So when ever you want sound off ,cry ,scream go ahead we here to support you

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Hello my lovely thanks for the message it makes me feel like I’m not alone I don’t know about you but I just feel like I’m on my own and his meds have been increased but the seizures are just something that make me stressed along with the stroke and now waiting for second blood tests to come back which was done because the first blood test came back borderline so that worrying why they needed to be done again … but I hope things go good with you sending many thanks for the message it means a lot to know other people are here to talk to because if you are not in a situation like this no one understands take care x

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Hi hope you are well but things are so difficult and all I want to do is cry my husband treats me like rubbish and every day is getting worse with his mood swings I can’t do anything right he don’t have a kind word to say he is constantly aggressive and nasty since his stroke I don’t think I can stay in this relationship of 23 years but how can I leave when he depends on me I cry every day why should I have to do this I don’t know what to do .x

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Hi hun do you have carers hun
Our colin has carers in 4 times a day .i like you hun our col can be aggressive toward us been called all sorts he called us a slag he said im robbing him cause im in control of all the finances now only cause col not got a clue what day it is
I been married 26 years oh no it 28 years lol bloody hell i think i losing my mind some days :sweat_smile:
Think you hubby unfortunately like col has everything taken from them and they feel helpless and a burdon and got hurt them watch they wives run around doing things for them
Our col hates me changing him but i do it
We do take it personal when they screaming and shouting at us and it do hurt i could kill colin sometimes i could walk away and think stuff it but we dont
Tell him how upset you are and please find a friend you can go outfor a coffee or a hours walk dont know whete you live but hun you got look after yourself find a nice place to go
I just book a weekend away after months of my boys and everyone telling me totake some time away and im looking forward to it xx
Here anytime hun

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Have you considered if you are entitled o any benefits which might be used to pay for carers - they would be able to take some of the pressure of you. Try AgeUK. They might be able to advise you.

Hello @Sunshine2 - welcome to the community.
So sorry to hear about your situation. As a carer myself, I can sympathise and understand some of the things you are going through. It seems you are not getting good support which is unfortunate.
I would like to suggest you contact the Stroke Association and your local council to see if they can help.
It is hard caring for someone, especially if there are communication and emotional issues as a result of the stroke. Carers should feel or think they are doing anything wrong as it is very hard to provide the care.
I wish you and your husband all the best.

Hi @teresa_rockley - I don’t believe you are doing anything wrong, nor that you or your husband are being punished. Recovery rates for stroke survivors are different because even though they are called stroke survivors, they are not all the same. I mean there are different levels of stroke and different people are affected differently. Also, age is a factor. So if you are an older stroke survivor you may take longer to recover than if you are a younger survivor etc.

Also, the help and support received is a major factor in the recovery.

It may help you to know I am a carer for someone who had their stroke in the late 80s and they are now in their early 90s. We are talking about three and a half years. The stroke hit very hard and left the survivor totally dependant on 2 support carers for all their needs. They are “bed bound” wearing pads, had a permanent catheter for nearly 3 years which thankfully has now been removed and as a result the quality of life is much improved.

With Covid and lockdown there was next to no support from the medical/NHS professionals, just care workers coming to change pads and bed wash.

It is very tough o you the carer and your loved one the stroke survivor. If you feel like screaming, I would suggest it is OK to do so as it will get it out of your system.

Wishing you and your husband all the best.


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