New and not coping

Hello,

My name is Marie and my husband had a stroke on Tuesday 12 March 2024. The stroke has effected his speech and he was transferred to a speech and language rehabilitation unit yesterday. I am an emotional wreck and cannot stop sobbing which is not helpful but I am struggling to cope. I don’t know where to turn to for help as it seems there is no support where I live in London. This is a life changing event for both of us.

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Hi Marie
Have you spoken to the staff at the rehabilitation centre about support?
What area of London are you in?
Here are a couple of places that should be able to help
MIND

Think Ahead

The main thing is, is that you are not alone., we’re here for you, just shout

Lea :heart:

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Thank you Lea, that’s very helpful and I will look into this tonight.

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Hello Marie and welcome to this forum, so sorry to hear of your husband’s stroke. We are a merry band of stroke survivors and their carers and families. We have all suffered different types of stroke and have found ourselves on very different roads to recovery. We are always here to offer help and advice, so please shout out and I’m sure someone will be there to offer some support.

Please remember you are not alone.

Regards Sue

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Hi Marie
Everyone’s stroke is different but hope this little story will give you some hope.
My speech wasn’t impacted but a number of people in the rehab unit did have fairly severe problems.
Pretty much every day I left my room, I would pass the same bloke in the corridor. I always said good morning and he couldn’t reply. It was just a mumbled sound. This must have been the case for a month. Pretty obvious he was frustrated.

One day, much the same as any other I passed him in the corridor and said the usual good morning, you ok ?, expecting the same sheepish response. My mouth fell open.
“Hi, I’m good, how are you ?” I know he was happy but it made everyone else happy on the ward as well.

Literally overnight something had clicked back in place. It’s scary at the moment but hopefully it will get better for you.
All the best
Nigel

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Yes it’s very scary, Marie. But I think you will both begin to put together a support network and some resources to help you work through this together. This site is a good place to start.

I had my stroke at the beginning of January — a comparatively mild one. It took some weeks to get back to literacy and I was helped by an NHS speech therapist. I then developed an interest in “neuroplasticity” and read several books, articles, reports. That led me to Feldenkrais and I do a regular class now. I learned how important movement is for helping a damaged brain rewire itself and so I make sure I get out walking every day, unless the rain is very bad. Fresh air and sunshine are essential to my recovery. So is contact with friends — by phone, by text, and face-to-face. I have been suffering for several weeks with crippling anxiety in crowds and any kind of public place. I have some sessions of CBT planned for April. A friend has given me some good practical active, based on his own experience, of how to deal with this.

You also need to look after yourself and your own health. What do you need? You have to take care of your own health, physical and mental. I remember a pre-flight announcement once on an aeroplane. Parents were told to ensure that their own seat-belt was fastened BEFORE they attended to their child’s. Wise words!

What will work for you and your husband is not, of course, what is working for me. I simply use my case to illustrate the kinds of active steps you can both take to help recovery in the coming weeks. Things will definitely get better!

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Hi @Marie123 welcome to the forum, the club no one wanted to join but very happy we are here for each other now :smile: :people_hugging:

This has been quite the shock for you both, but know this, your husband is in good hands and now in the right place to start his road to recovery. And that is a very good sign! It might be good if you can also show him this post and site, I’m sure it would go a great way to reassuring him too.

I couldn’t speak after my stroke, right side paralysis too so couldn’t walk or do anything with right arm. The speech was the biggest issue for me; I’d rather lose an arm and leg than my speech. I couldn’t ask any of those questions that really need asking.

My stroke was during the covid lock downs so I didn’t have my hubby to visit to ask all those questions that needed asking. In fact there was very little explanation to my condition or outcome and what the future holds for me other than things will improve over time basically.

So you can feel a little trapped and very isolate inside your head, you can hear and understand perfectly but can’t communicate, it’s like living in a glass box! It took some months for me to go from speaking nothing, to gibberish, to simple legible speech, but I got there in the end and so can your husband :blush:

I do still have a mild Aphasia, and that is something you might want to read up on just in case. For me my word finding is not so bad these days but my stumbling block is still getting them out of my mouth, but to anyone else its just a bit of a stammer now. There is so much more to this speech malarkey than you realise :face_with_spiral_eyes:

His reading ability might be limited just a few lines at a time, that is something else that will increase over time.

Books/newspapers/magazines may very well be too overwhelming to read, too much text; my reply to you may very well be too much for him yet. That’s why I try to break up my text into smaller bites, so it’s not too overwhelming to other readers :smile:

You never said whether he has any limb paralysis or other issues so I’m assuming you husband’s speech is the biggest issue for him. There are no stupid questions when it comes to strokes so ask anything and there will always be someone here to answer or help to find it. Life will calm down for you soon if you let it. In the meantime take care of yourself and if you need someone to talk to there is always the Stroke Associations helpline so give them a ring :smile: :people_hugging:

Here’s a little inspiration for you…just click on the blue title :smile:

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@Marie123 Hi & welcome to the community. Sorry to hear you are struggling following your husbands stroke. It’s a massive event for you both so you’ll need time to absorb it all too.

In addition to all the above your GP surgery might offer a carers support network so ask them how you access that. You could also try places like Headway & the brain & spine foundation. Have a look at the Stroke Association publications which will help explain things for you.

It will take time but things will get easier for you. Please reach out on here if you need too.

Best wishes

Ann

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Thank you for your kind offer of help Sue.

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Thank you for being so supportive everyone, much appreciated. @Nigelglos @JPS - thank you for sharing your stories. @EmeraldEyes - it’s great that you have managed to recover; thank you for sharing your story too.

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I think we’d all be pleased to hear of your progress and experiences over the coming months. You can add to the resources here for people who are struggling — which is everybody sometimes!

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Hello & welcome

This might help… https://youtube.com/playlist?list=PLC9GO6zyMs7t9p2nJkwtYJDZkEeA_lD9d&si=LsaX5aNg_5tR--PY

It’s 4mins

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I had the Stroke and my wife does the supporting.
We found it came as a shock to both of us. For me it was a big shock for i suddenly realised i was not immortal. Also that when the stroke started, there was nothing i could do but deal with it when i came out the other side so to speak.
For my wife she saw someone realising they were no longer indestructable (as we all think we are)
I asked my wife what she thought now (stroke was Feb 2021) She says she sees a modified version of me but can see the old me in flashes.
For me I see my wife worrying about me, and carrying the responsibility and burden for both of us.
The only advice i can give is if he feels fatigued just let him rest , you cannot push through (as even some doctors say) so the rest is a good thing.

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Good morning,
Thank you so much for all your messages. @Al59 I fully agree that rest is a very important part of recovery. @SimonInEdinburgh thank you for sharing the video, I could fully relate to it. I am doing better today.

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Glad to hear that :slight_smile:
Hope You get to relate to the second half soon as well

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Hi Marie, I’ve had two strokes one in 2016 and the second in 2023. My wife keeps reminding me that I’m still alive and I should be thankful. I was working when the first stroke happened and got awfully suicidal, but that went and I got over things. This second stroke has left me unable to swallow, so I can’t eat or drink anything. I’m fed through a PEG in my stomach. That said I know that eventually I’ll get over it.
So, tell yourself (and your husband) that at least he’s still alive!
I know go on the stroke association on-line activities, a weekly series of zoom meetings. There you meet all manner of stroke affected people. Just remember to keep yours and your husbands head held high. You can only (and he) get better!

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Hi again, below is a list of things I was given by the stroke association a month ago:

Chair exercises

Mindfulness

Breathing exercises

Box breathing

Befriending

My stroke guide - zoom

Stairlift

Online activities hub

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There’s a zoom cafe on Thursdays and a Friday carers 1st & 3rd Friday
Details Weekly Zoom Online ‘cafe’ (also Carers)

Ciao
Simon

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@PhilipS - you are right, he is still alive and making small progress daily. We have a long way to go; he is trying to communicate by writing and I am doing my best to understand what he means.
May I ask if you were on blood thinners when you had your second stroke? I am terrified he might have another one.

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@Marie123 yes I’m on clopidogrel. Not exactly a thinner because it makes the platelets less sticky. The Drs treat it as a thinner. I had to come off it for a week before they inserted the PEG in my stomach. I’ve been on clopidogrel since my first stroke 2nd June 2016.
You can’t live in fear of something that hasn’t happened! So don’t worry about another stroke.
Your husband will be thinking about you constantly. Thinking about what he’s putting you through, so you’ve got to be resolute, otherwise the pair of you will enter a quagmire of despondency.

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