So much info to share but so much to learn. My uncle suffered a major stroke to the left side of his brain affecting his right side. The doctors didn’t expect him to survive he has severe brain damage which has has left him with full right side paralysis, extreme pain with the right side. Dysphagia, unable communicate and cognitive difficulties. He was discharged from hospital 3 weeks ago to a care home but we are questioning if they are experienced enough to meet his needs. Finally physio saw him last Thursday as he has been left in bed for 3 weeks. The hospital were managing to move him to a mobility chair at least once a week with a full hoist. However the care home wouldn’t until physio had assessed him. He is in extreme pain when in bed and when moved. We have now been informed his malnutrition score is 2. He had a peg fitted when in hospital but is managing to use his left hand to continue feeding himself. Communication is very difficult and he gets very frustrated. It’s only my mum his sister and me to care for him as he has no wife or children. We are trying to support him and push through services but feels a battle with the care home. He’s recently undergone the initial CHC assessment but we’re trying to establish if he ideally needs a neurological care home to meet his needs. We are desperately trying to ensure his comfortable but keen he doesn’t remain in bed as they won’t help his physical or mental health. He was a very strong and independent man, only recently turned 70 but very active and didn’t like to inconvenience anyone. They don’t expect and further recovery just to maintain him but my fear is there’s a decline since being at the care home. We’re told they plan to start ensure you boost his nutrients as I think his body is using all the food he’s resting to sustain itself. He has a very healthy appetite just has to careful as eating can be hard and on occasions he suffers with overheating pocketing when eating. Has anyone else gone through a similar outcome is there anything more we can do to help with recovery.
There is a route out of that situation.
Obtaining a laptop, using a keyboard to communicate, was my escape.
This forum was a further step towards autonomy.
I could share my world, begin to see where I was and begin to make a way forward.
Stroke and the nasty, frightening, lonely, directionless world it leaves one in doesn’t need to be the end.
With the will to move on, encouragement from others, patient tiny struggling steps forward, there is a future.
It’s a long haul, never over, but things can improve.
I’m away from my stroke by four years. I wouldn’t say I’ve recovered, but I’m doing much better than I was when I came home.
Life keeps throwing out the challenges. My wife and carer, who has seen me through all this, had a stroke herself a few weeks ago.
So now we are dealing with that. I now drive my own car and use a mobility scooter to get about a bit.
Later this morning I’ll be running her to an exercise class at hospital. The first stages of post stroke treatment.
It is about us all. There are all sorts of stories of how it turns out.
I’ve had help but have also, on occasions, had to find my own way in a world with no apparent direction or aim.
Don’t give up, there is a tomorrow.
Oh yes.
It is good to share.
It helps others to pick out a way forward. It also helps you sort it out a bit in your head as you put the words describing the experience down for others to read.
This is a safe space to find encouragement, advice, and yes, a shoulder to cry on when everything goes pear shaped because there are downs as well as ups but we will get through it.
keep on keepin on
Thank you, I so appreciate your reply.
Unfortunately we have tried a laptop but my uncle doesn’t seem to understand the keys. We’ve tried writing and he can nearly mirror a word I write but doesn’t seem to be able to write himself.
We will persevere and as you say another day could bring improvement.
As a family it’s very hard to see my uncle in this way but more so for him. He doesn’t seem to retain much info or remember who may have visited the previous day but hopefully with love and support he will gradually improve and at least somehow be able to communicate with us all
We now waiting for the SALT referral to be processed as seems none of the services were transferred from hospital to care home.
It’s a constant battle for my uncle and us at the moment.
Thankyou again Dawn
Brains have an amazing capacity for healing. You will notice many changes that are improvements as your uncle progresses. It’s good that he has an appetite, keep an eye on wha he is being given to eat as when I was convalescing, the hospital diet was woeful I am diabetic as well, so it was important to get the right nutrition. He may not respond to visits from family now, but he will be aware and it will be an immense support to him. He has you all to fight his corner, which is such a good thing.Memory can be elusive post stroke, but it does cut in a odd times, so be aware how much your love and support is helping him.
Thankyou so much that’s really helpful and reassuring.
He’s diabetic too and his sugar levels were spiking all the time.
I’m hoping with the ensure aswell he’s weight will increase but I believe his body is using all the energy he’s feeding himself to work and there’s nothing surplus to gain weight.
He’s very susceptible you chest infections which is our next concern along with the aspiration pneumonia.
I will again follow up with the social worker and care home manager to see progress on improving care level.
I will keep trying the keyboard, writing and hopefully he’ll be able to communicate.
Thankyou soon Dawn
It has been said by many that although little may seem to be happening in fact your uncle is working hard at geting himself back.
It is a very wearing, tiring, experience. His body and he himself needs time and rest to begin putting the bits together.
It is quite likely that things he rejects now will begin to interest him as he gets his energy and motivation together.
It is natural to want him alright again as soon as possible but I think you will find that it takes more time than you at first realise. Little by little you’ll see him get hold of things again.
He is in a very lonely place. Just by being there for him you are giving him something to hold on to and a reason to move along.
Be patient. Eventually you will look back and realise things do get better.
A conversation with @Anna_Moderator could point you towards ways of dealing with your present situation.
There is much that the Stroke Association can offer in the way of support and guidance for all affected by stroke.
Hi @DawnT73 and welcome to the community. Sorry to hear of your uncle’s major stroke. I would echo what @Bobbi has said in relation to communication. If he can use at least one hand & has the necessary cognitive ability then a laptop/tablet/smartphone
are all good ways to communicate. There are also things like picture cards that you can get so he can point at them. Healing from a stroke can take many months/years but improvements are possible with a lot of hard work and determination. Even in bed
there are exercises you can do with him to try and help improve things. Try getting him to move his arm / leg etc. Even if it doesn’t move it is all helping the brain to remember that he has these limbs and eventually it will trigger something and small
movements will happen.
I lost over 4 stone after my stroke due to appetite issues and the fact that I was using up so much energy trying to do the simplest of things. I was put on Ensure drinks and am still taking them to this day. My stroke was over 4 years
ago now. Just be careful as they may contain a high sugar content which will mean his diabetes will need careful monitoring. There are alternatives though that they could consider instead.
At this early stage everything he does will be exhausting. So doing things with him in short burst is probably better than trying to do too much. Even conversations exhausted me for the first couple of years. One sentence spoken and
I was done for the rest of the day. Madness isn’t it but it really does affect some people that way.
It sounds like you are doing a great job of advocating for him and trying to get things moving. There is always hope when it comes to stroke recovery. Many people have been told they won’t improve and go on to defy the odds. Of course
there are always those that don’t too. But nothing to lose and everything to gain.
Please keep asking any questions you may have. Someone can usually help.
Wishing you all the very best.
Hi @DawnT73
Welcome to the community, I’m sorry to hear about your uncles stoke.
It sounds like there a few different things going on for your uncle at the moment. With regards to his communication, you’ve already had some great response, I would also recommend having a look at our communication page on our website, you can also order our communication pack which may help you to find ways to communicate. You’ve also mentioned some cognition problems, you can have a read over our information on cognition on our website too.
My other thought on this would be to give our Stroke Support Helpline:0303 3033 100 a call. They can be a really good listening ear for anything else that might come up and can help to point you in the right direction. I hope you’ll also find this community helpful as yourself and your mum navigate through this. Please do remember to make sure you’re looking after yourselves too - it’s easy to forget about yourself when these things happen.
Anna
Hello Dawn. Welcome to the forum and it’s nice to meet you.
Thank you for sharing your uncle’s story. I see that @Bobbi, @Dexster and @Mrs5K have already offered some good advice and this is based on their experiences as stroke survivors. This forum and the Stroke Association are great for helping people in your and your uncle’s situation and so please do try and look for help here. You can ask questions, join chat groups and there are activity groups - you will find this information on the website and our moderator Anna_Moderator will be along soon to offer more advice.
Though five and a half months might seem like a long time, it may not necessarily be so. In the world of stroke things move at different rates for different people and we should remember we are all different and what works for one many not work for another. We can certainly learn from others and we can look for guidance, but ultimately we must find what works for us and what works for us depends on many variables any of which can change things.
Your uncle has only recently been discharged from hospital and this suggests he spent five months in hospital? If this is the case, that seems like a long time to me and it suggests (to me) that your uncle needs more help and support than some other stroke patients and also it suggests that his rate of recovery may be slower than others. I note you say doctors didn’t expect him to survive and the dame to his brain is severe. This also supports the view things may take longer and progress may be slow or slower to start with.
There is much more that we can talk about, but it might be best to address things as we move along.
To start with and the biggest plus for me is I like the fact your uncle is (you say was, I say is) a very strong and independent man, only recently turned 70 but very active. He has proven this by surviving and being discharged from hospital when doctors didn’t expect him to.
This is a great start and now, you and your uncle can build on this foundation.
There is plenty of hard work to do and there is plenty of time - he is only 70.
But beware, this is for us because the medical profession don’t see it that way.
I speak from bitter experience as my Mum was hugely discriminated against because of her age when she had her stroke. Her story is documented on this forum.
It’s good that you see this - but a battle is all it is. You and your uncle now have to learn the rules of the battle. Don’t worry, there is plenty of support and guidance available, both here on this forum and elsewhere.
If you are willing to fight (and I can see your uncle clearly is) then it is a lot easier because it means you can ask questions and then you will get answers.
I know you will be concerned and will have worries, but please try not to. Sounds easy to say, but it has to be said and it needs to be done so you can carry on in the positive manner that you are doing now.
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Please take your time - don’t rush. Give your uncle (his brain and his body) time. They need it and the slower you take it, especially in the early days, the better the recovery will be.
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Don’t panic - things happen, but they can be managed. Keep an eye out, watch out for changes and warning signs but don’t panic
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It’s great your uncle has an appetite and is able to feed himself. This is fantastic as fuel is needed, but as you say watch out for the “overheating pocketing when eating”.
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Don’t worry about the weight loss - this happens and in time he will regain his weight. His dietician will be monitoring his weight and will adjust his calorific intake as appropriate.
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Keep him mobile - physical activity, when in bed, seated or whatever. Very important and aids recovery. Make good use of the physio.
This is to start you off and plenty more is on offer as and when needed.
Just to let you know, I believe your uncle is in a good place right now and with you and his Sister helping him, he will make a good recovery. The recovery he makes will largely be down to him and the help is gets. I, nor anyone else can offer any guarantees and there are no certainties as we are all different, but I believe your uncle has a great chance to enjoy a good life.
I am sure it has already been mentioned, but please look after yourself and your Mum as the carers can only care if they themselves don’t need to be cared for 
Wishing you and your Mum and your Uncle (he is blessed) all the very best.
Namaste|
Jim
Thank you Bobbi,
I am fairly new to stroke, being just over three months now. So sorry to hear about your wife/carer having recently had a stroke herself. Life can be especially cruel at times.
I was just reading some stories on our community here and afterwards put on 24hours in A&E. Purely coincidence but it was mainly about stroke patients. It was an uncomfortable and informative watch to say the least. Yes it moved me to tears being able to relate to the patients. Having been through it whilst still in recovery I could almost palpate their fear, confusion, panic, emotions and not knowing. It mentioned that just in Kings Hospital alone in London, they see around 13,00 stroke patients a year. Stating it is one of the most highest causes of death and adult disability. Not wanting to appear morbid or negative but the figures shocked me. Just one place in our country. With so many people being affected how is it we can feel so alone ? We are survivors, unfortunately not all of us make it. My heart, thoughts and prayers go out to all of you with whom this resonates, bless you 
We are in a community and club no one ever wants to join. However we are here and here we must fight, be brave, be patient, overcome hurdles, reflect and try to move forward as best we can, empathise with others, share stories and struggles, learn, appreciate life, whilst being kind to ourselves.
Thank you to anyone and everyone that shares what is personal and difficult. It really does help 
Things haven’t been going so smoothly recently and I’m plagued with worry.
My wife is doing well and is also understanding.
I’m following advice I often dish out and I am trying to ease down, rest and take on less.
I’m hoping a relaxed weekend will set me up ready to take things on again.
I don’t think anyone who is experiencing stroke has an easy journey. It can be horrible and lonely but there is usually a better state of affairs somewhere ahead.
keep on keepin on
I’ve been visiting this forum, this community, for four years since my stroke.
I write on this forum not because I’m an expert who has all the answers.
I’m here because I’m another like the rest.
I too experience the challenges, the difficulties, the mountains of worry, the feelings of helplessness and hopelessness.
I am able to write about it.
I’ve been told on occasions that my writings could be a source of distress. Some think I should keep quiet, bury my feelings inside, pretend that everything’s okay when it is not.
I prefer to look at what I am up against head on, to face up to my circumstances, attempt to find ways to deal with things. None of this would be possible without being honest with myself and, by extension, as truthful as I am able to be in my writing.
I’m not searching for a popularity accolade. What I want is to map a path through all this apparent chaos, fear and darkness in the hope I can emerge in a better place.
I believe that is a worthwhile endeavour and that it is one we can attempt together.
I say, “It’s not all over yet baby blue.”
keep on keepin on
I like what I see.
You are your own man.
You are also Hilary’s man.
From what I have gathered since I got to meet you here on this form, you have done what you had to do and it works for you. This is what matters - it works for you. Your #1 priority is you and then Hilary.
As you say, you are not hare to win a popularity contest.
If after looking after yourself and then Hilary, you are able to help others, all well and good.
If not, it does not matter.
As I see it, and because we don’t want necessarily to win a popularity contest, we say as we see. In so doing, we may find others don’t agree, or may even get upset. This is nothing new. It happens in all walks of life, it happened before you had the stroke, it happens now and will happen in the future. That is what being human is, at least that’s how I see it.
You carry on and do what you must/have to.
You’ve set the trap and I fell right in
My absolute favourite bersion of this song.
Over to you Bobbi!
Yay Bobbi! You were one of the first to give me hope and a positive outlook….its so hard to know what will cause others distress, we are all so individual so you shouldn’t worry too much, you are always positive even now through yours and Hilary’s recent tough times…continue to shout the battle cry!!! Keep on keeping on