Good morning everyone,
I’m very glad to be here. I rang the Stroke Association for advice and they told me about this forum.
My husband had a bleed on the brain stroke, three weeks ago. He is paralysed down his left side. The physiotherapist has arranged a meeting for next week to discuss him being discharged from hospital. He is still paralysed.
I am terrified and am trying to think of questions to ask.
This is an unknown situation to us, as it is to anyone who suddenly has a stroke.
If anyone has any suggestions of the type of thing I should be asking I would appreciate it. I work full time and am a carer for my elderly mother, so this is completely overwhelming me at the moment.
Thanks for reading.
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Hello Josie,
I am someone who had a stroke. I have been a regular visitor on this forum since I was discharged from hospital, about eighteen months ago.
I live with my wife who cares for me.
We are all folk affected by stroke, you, your husband and mother, too.
This is a frightening and life changing experience.
I won’t say we are glad you are here, none of us chose this.
The MyStrokeGuide forum is a good place to meet up with people like us. We will listen sympathetically, share our own experiences and maybe be able to give some useful and relevant advice.
You made a good move contacting the Stroke Association, they can help with much of what confronts both Stroke Survivor and also his/her family friends and acquaintances. They can point you to help of a practical nature which can make a big difference in how it all works out.
The next stage after that fear is learning to cope and getting help. You are on a journey, do not give up hope. There are answers and you will make progress.
As I said before, this is a good place to get reassurance, answers and share what is happening to you. There are difficulties but you will find help.
Use this Forum whenever and for whatever reason, this is a safe, welcoming place but remember don’t reveal any personal details here as this is visible to all on the Internet.
Keep on keepin’ on
One day at a time
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Hello and welcome @Josie2
Yes having a loved one stricken by a stroke is a very disorientating thing. My wife’s feelings when it happened to me are https://www.instagram.com/s/aGlnaGxpZ2h0OjE3OTUwMjQ4NjI1NTc3NDIx?story_media_id=2705327255858510749_10661543&igshid=MTc4MmM1YmI2Ng==
It’s a few min long! And ends with both of us in a much better place than that first few months .
She runs the SA carers zoom ‘cafe’ every other Thursday - details linked at the end of welcome post as are details of other useful references like face-to-face support groups. Here in the Lothians there is a career group called Vocal I’m sure there are others where you are
The above is a consolidated ‘what we wished we heard when it was all new’
I second everything Bobbi has said to you. No doubt others will drop by and say hello too this is a very supportive community and you will need all the support you can get don’t be afraid to take it (and Lea just chipped in and said “take time for yourself don’t feel guilty about it” - only right now have I found out she felt guilty we’re having a discussion about it so I’ll post this 
)
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Thank you Bobbi for your reply, it has made me cry. I’m doing a lot of that lately. It’s reassuring that so many people on this site are here to support others. I hope I will be able to contribute to that support as time goes on and me and my husband navigate our way through this confusing place we find ourselves in.
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Thank you Simon for your welcome and the links. I will check them out. I already feel relieved to have found this community and the SA.
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I’m glad that you’re feeling some relief. It’s a very very stressful time. I think if you look at Lea’s video you’ll see that it was very much worse for her than it was for me in the first few weeks.
Continue to reach out. As a carer you’ll be less visible to the health services and actually probably need more support then they are set up to give. The welcome post links too sources of local support - I recommend you make contact
Think positive, smile, have hope - there can be a good life post stroke but there’s no going back to the old one.
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Thank you for the encouragement Simon, I appreciate it.
Unfortunately I do not use Instagram so I can’t access that link, but I will check out the welcome post.
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Hi @Josie2 welcome to the forum, this is always a good place to alleviate your fears so ask away 
We all fear the unknown but there’s really no need to be. Have you ever had children, if so do you remember the first time home with baby, the sudden realisation you’re on your own now, you are responsible now for caring for that small life. No midwives/nurses to call on and help like in hospital with everything on hand. But oh how quickly that fear is forgotten as you fall in to that roll and routine! It’ll be much the same when your husband comes home and he is going to afraid too. And he’s also going to be afraid for you having to take on that responsibility. So be sure to communicate with each other, to try to alleviate each other’s fears. But don’t “baby” him at the same time, take your que’s from him because he needs to be trying to do things for himself as much as he can do. So don’t be the over protective mother hen.
The Welcome post link Simon has given covers an awful lot of what to expect, so it’s well worth a read.
I’ll just say, don’t come home without a full care package in place. So make sure you are armed with all relevant contact numbers such as:
Local Stroke Team if one
Occupational Therapy
Physio Therapy
Speach Therapist if needed
Diatician if needed
You keep those numbers handy and you call them if they haven’t already set up dates to call or come to you.
If you have any concerns don’t hesitate to call your stroke team, that’s what they are there for.
Like wise, if you think he’s having another stroke, don’t hesitate to phone 999, that’s what they are there for. And they will always know better than a GP or this forum even, as they are better equipped to diagnose and treat on the spot.
Take care now.
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Another post that may help is
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@Josie2 just popping by to say hi & welcome to this lovely forum. Everything will be overwhelming for you initially. The fear of the unknown is always stressful.
You’ll need to ask the hospital about aids & adjustments your husband will need when he gets home. Talk to them about your concerns & what you need to do / who you need to contact if you need some help or advice. Be honest with them about how you’ll cope. Don’t tell them you can do it all if you can’t especially as you are working & care for your mum too. Maybe research any financial support you could get - citizens advice can help with this. Will your employer allow you some carers leave? If not ask GP for a fit note for a while.
Stroke is life changing for not just the stroke survivor but their loved ones too.
Above all look after yourself too. You’ll be no use to anyone if you don’t.
Sending you my very best wishes.
Ann xx
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A point that might be of interest is that my physiotherapist at the hospital was directly concerned with the set up at my home.
When the bed that I was supposed to have didn’t turn up she chased it up. She came with me when I first came home and made sure my needs were met and I was able to use what had been provided.
She was very helpful and reassuring to both me and my wife. At that point my mobility was severely restricted and I needed help all the time.
More equipment was supplied as I became a bit more mobile.
You will see all sorts of changes and help is available as improvement occurs. It can mean waiting sometimes but good things do happen. You are not alone but sometimes you will need to remember that.
If you are going to apply for funding, get help. It is something that needs to be done properly.
Keep on keepin’ on
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Thank you for your welcomes Mahoney, Emerald Eyes and Mrs5K, and thank you Simon for the additional information in the post. Your physio sounds amazing Bobbi.
What I am confused about is my husband is still paralysed. It takes at least two nurses or physiotherapists to hoist him from the bed into a wheelchair, yet they are preparing to send him home like this.
We are being dissuaded from pursuing transfer to a rehab centre at another hospital, but we are not being told why.
My husband is desperate to be able to stand and take even one step, but we feel his treatment is being wound down and he is being cast aside.
Maybe we are overreacting because we are so terrified and everything is so new to us and unknown. I do not feel I can trust anyone around me to act in the best interests of my husband because we feel that obstacles are being set up against us.
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Josie your husband is very much where I was when I left hospital eighteen months ago. I was bed bound and needed help to do any moving. It was all very depressing. I just felt totally helpless.
I am still limited in many respects but have made changes I would not have believed possible.
If he wants to make advances I can’t make promises but he could well be in a much better state as the months go by.
Ask if his physio can show him how to do a thing called a transfer. It was a big deal for me which helped me get going.
If not ask for other suggestions.
I can now walk unaided, which is a huge improvement. I won’t be strolling to the shops, but that could well come with time.
It has happened quite slowly but over time things are getting better.
Each stroke case is individual and both you and he will have to find your own way, with some help of course. You both will have to do all the work, but it really is worth it.
Exercise, however rudimentary and physiotherapy will help a lot and should be available.
Make your issues and questions clear at the revue meeting.
They won’t be able to make promises but you will get answers.
This might seem like a challenge but the idea of this meeting is to assess and discuss the needs of both of you when he comes home. It’s all been done before so they will likely have a plan to offer you.
Just keep trying, both of you, this has all been done before by others.
You will have ups and downs but don’t give up, it is worth the effort.
All the best and stay in touch.
Keep on keepin’ on
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Thank you Bobbi for sharing your experience and the info regarding the transfer. I can feel my panic rising and feel like I’m starting to crumble. My husband is doing his very best to stay upbeat and positive, but his slow response to the physiotherapy is frustrating.
If the unit he is in won’t keep him, we are desperate for him to be transferred to a rehabilitation unit in any other hospital to continue with the physiotherapy he so desperately needs and wants on a daily basis.
I am starting to feel that sending patients home paralysed is usual for hospitals. I wanted to go into this meeting only prepared to discuss further rehabilitation and not go near the subject of sending my husband home yet. This is why I am so frightened and panicked.
My husband just called me and had to put his phone down to try to straighten himself up and we had to end the call because he had slid down the bed where his face is resting on the bars of the bed. That’s how bad he is, and I can’t lift him when I am there when it happens so if he is at home what on earth would we do?
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Hello Mahoney, when you say a 6 week care package what happens after the 6 weeks? My husband is unable to stand, walk, use his left arm, and has to be hoisted by at least 2 nurses out of his hospital bed. If he slides to the side in the bed he cannot right himself. He is not able to get out of bed to use a commode or toilet frame.
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Thank you for your reply Mahoney. My husband is 59. I work full time and because of various injuries of my own and being a carer for my elderly mother am reluctant to commit to being a full time carer for my husband, which sounds awful, but how will we live if I don’t have a job? I have worked full time for 45 years and cannot retire for another 5 so I need to stay employed in spite of this. Thank you for the advice about PALS and seeing what the hospital put in place. We are drowning in ignorance of so many things.
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There is another one that you can add Simon. : "don’t try and force me to make eye contact when talking to you ". Let my eyes wander at will . I am not blind , I can hear you with clarity but the stroke has left me unable to make eye contact with anyone !
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Hi @Josie2
You should probably start the process of applying for PIP and a blue badge right now
pip especially can take a long time to come through but will be back dated to your application date the blue badge maybe swift or maybe slow start
In both cases citizens advice bureau & various other charities can guide you through the process and it’s worth getting their insight into how to fill the forms in because are peculiarities that would be natural most people
The SA has many pages of info on the my stroke guide WEBSITE - not the msg forum. It’s hard to extract but it is there. I posted the welcome link, that links to support groups where your ignorance will be understood & the gaps filled. There are many posts here but we’ve not yet collated them but they are finally worth search
Also…
There arre techniques your husband is likely to learn for using his strong side to move in bed. For example I used to towel trapped around the bed head that I could grip with my working hand and then the heel of my working foot pressed into the bed and I could move around a bit. Swinging the working leg off the east side of the bed so that you can gain purchase was my technique for getting to sit on the edge of the bed. I think it took me about a month to get to that stage. I can walk again albeit with much reduced capability & capacity
A Self-directed program of Physio is - imho - the most important thing to devise & modify on a regular basis. But there to much to describe here
Ps what’s his name?
Caio Simon
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Good morning everybody, sorry not to update sooner, this is the first chance I’ve had to come back to the forum.
The meeting we were told would be a multidisciplinary last week actually turned out to be a meeting with the physio team treating my husband. Btw Simon, his name is Mike.
So all my panic and fear was unnecessary, but I would like to wholeheartedly thank all of you for your support and brilliantly helpful information, which I am using to prepare for when we are faced with the actual multidisciplinary meeting.
Thank you Simon for the tip about using the towel, Mike was able to use that wrapped around the side bars of the bed to straighten himself up when he had slid sideways, using his right arm that works. Great tip.
Thank you again all, knowing you are here has encouraged both Mike and myself, and Mike is greatly encouraged to know that here is hope that he will walk again.
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