Hi all want to share our story and hope everything will getting better

Hi all, my name is Rachel, and my husband had a stroke last year in October on my daughter’s 2nd birthday. He is 45 years old, and I am 40. We live in London now; we don’t have family here. He had a significant stroke due to high blood pressure, resulting in left basal ganglia hemorrhage of over 100ml. He stayed in ICU for around 1 month, then moved to rehab for about 4 months, followed by community rehab for 1 month. Last month he was discharged from rehab and came back home. Now we have carers come to our home four times a day, and we are still waiting for physiotherapy and speech therapy, which is quite stressful and frustrating because I need to look after both of them, and therapy is very important. My husband has aphasia and can’t move his right side. He also can’t use a computer or write or type. I feel very lost and don’t know what I should do; sorry, I feel very confused, and there are a lot of things I don’t know what to write about. We have been together for 17 years, and now I have to accept this and try to sort out life. Putting him in a care home is really not a good option, but staying at home is also not easy… I don’t know anything about the future.”

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Hi Rachel and welcome. You and your husband have been through and
are dealing with a huge change in your lives. Plus you have a toddler to raise. All big things. I hope you get physio sorted as this will help hubby. I was lucky i had a stroke in jan 23. It affected my right side and the occupational health team came to my home twice a week for 6 months. I hated and could not do the exercises at first but i was determined not to be beaten! I wish you all the luck in the world, together you will get through this and speak to your dr - x

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Rachel added her first post at

And I guess got confused by the software here :slight_smile:

Should maybe somebody merge the two?

that way Rachel has an easier to follow response and people can be additive rather than duplicative in their replies :slight_smile:

@Mrs5K @CommunityAdmin @Nicola_Moderator
Caio
Simon

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Hi this is the first time i am still learning how should use this forum …

“Hi all, my name is Rachel, and my husband had a stroke last year in October on my daughter’s 2nd birthday. He is 45 years old, and I am 40. We live in London now; we don’t have family here. He had a significant stroke due to high blood pressure, resulting in left basal ganglia hemorrhage of over 100ml. He stayed in ICU for around 1 month, then moved to rehab for about 4 months, followed by community rehab for 1 month. Last month he was discharged from rehab and came back home. Now we have carers come to our home four times a day, and we are still waiting for physiotherapy and speech therapy, which is quite stressful and frustrating because I need to look after both of them, and therapy is very important. My husband has aphasia and can’t move his right side. He also can’t use a computer or write or type. I feel very lost and don’t know what I should do; sorry, I feel very confused, and there are a lot of things I don’t know what to write about. We have been together for 17 years, and now I have to accept this and try to sort out life. Putting him in a care home is really not a good option, but staying at home is also not easy… I don’t know anything about the future.”

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Hi Rachel @Dago

Welcome but sorry You have reason to join us.

Your story is sadly is not unique - but take solace in that there are many stories here that start like yours and show improvement over the following years. I am sorry to say they have elements of ups and downs in that time and it is a marathon not a sprint.

You’ll be able to find other people’s journeys by using the magnifying glass to search. There is a wealth of information here. Also if you ask questions there is a lot of support from empathetic people who have trodden the same path.

You might find that the welcome post SWP click the blue text covers some of the basics also you might find kieran’s post on benefits useful and the stroke association helpline stroke helpline and also different strokes who amongst their resources and financial assistance etc have a children’s pack that may be useful.

as the carer you will now be the pivot of all things. That will require a lot of strength over a long time. Unfortunately the health service does not recognise the support needed but there are many organisations that do - help lines should be able to point you in the direction and there are support groups listed here Support Groups for Anne & anybody else 1of2 (Although mostly not dedicated to carers they all include carer support and will be ways of networking for more)

If you call the stroke association also ask for the Here For You calls from another carer. There is a carers zoom cafe every other Friday on here (the next is this Friday at 3:00 p.m. on https://bit.ly/StrokeCafe

Caio
Simon

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Hi Rachel @Dago & welcome to the community. Sorry to hear of your husbands stroke. It sounds like it has been a very tough road for you all so far and there is no doubt a tough road to travel yet. Things can improve though but nobody is saying itvwill be easy. It has changed your lives completely and finding a new way through can be difficult and it’s about finding a new routine, a new normal if you like. At a time when life probabbly feels anything but normal.

I can only imagine how difficult it is having a toddler too…i found it hard enough ans I was no where near as badly affected.

Ask as many questions as you need / want to here. There is usually someone who can offer their experience.

Sending my very best wishes to you all.

Ann

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Getting it all out and telling your story is a good place to start. You will begin to fit the pieces together in some sort of way so it works.

As the others here have said, we do care about you and what you are going through. There are a lot of us and although it might not seem like much of an answer, you will begin to find a way and no doubt see improvements that will encourage you.

It is a horrible shock and can be tough to face but it does get better. That goes for everyone affected by stroke.

keep on keepin’ on
:writing_hand: :smiley: :heart:

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Hi Rachel @Dago welcome to the forum. As everyone has already said, it will get better and you’re not alone here :people_hugging:

Your husband is young and has a lot to fight for, he doesn’t want to be a helpless invalid any more than you do. Considering his age, I suspect he wants his life back and will do everything he can to fight for it. Yes you may care for him while he can’t do for himself, but don’t baby him. He needs time and room to relearn, to rebuild or to adapt for his loses. Don’t give up on him and don’t despair, it’s really just about adapting to a new set of rules.

And you already know how to do that because you have a 2 year old! You’ve both already had to frequently adapt to each stage of your daughters development. As she’s gone from being carried everywhere, fed, bathed and changed, to being mobile and into everything and learning independence to feed/care for herself. So give it another year or two and you won’t be doing the half of what you are doing now for husband. You will all adapt and find your new normal and your daughter will want to be your little helper too. So let her wherever/whenever she can :slightly_smiling_face: :people_hugging:

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Thank you very much and I will try my best :blush:

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Hi Simon. I am getting a bit confused. hmm still try use this one . :grinning:

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Thank you for the information and I will try to do it . At the moment still a bit frustrated and try to settle down . Are there any zoom meeting we could talk and share ? Also do you know any speech online classes. Feel free if you have any advise for us. :pray:

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Hi Ann, Thank you for the message, yes it is very tough and hard to be honst I am not sure how should handle and sometimes still feel like a dream. Hope he will getting better :+1:

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Hi Bobbi, Thank you very much. I hope he could start to use computer and can type but he got very significate aphasia and I don’t know when he can come online .

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Thank you for the encourage. I will keep the hope :star_struck: sometimes still feel very sad and hard to accept what happened . He is there but it is different. Even I would like together with him to supermarket is become luxury :cry:

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Hi @Dago

We all have a struggles with making posts in the right place with the software here because it has many options but don’t worry the rest of us don’t care where they are if we can read and understand them we will reply :slight_smile:

There is a Thursday afternoon general chat via zoom Thus. from 1pm uk time on this link https://bit.ly/StrokeCafe - you and or your husband would be very welcome to come along - even if just to sit and listen with the camera off ! :slight_smile:
But we are happy to make the needed space for people with aphasia

full details

Weekly Zoom Online ‘cafe’ (also Carers)

Also a carers the next of which is this Friday at 3:00 and the same link will work.

@Bobbi runs one on a Friday evening and a Saturday morning. you need to join the Zog group for details

The stroke association run various things like quizzes online but you have to join Online Activities via their website then they text details

There are definitely speech therapy resources online EG on YouTube - exercises and the like. Also visit https://aphasiasupport.org/ and give them a call 01924 562443 - They’re a nice bunch :slight_smile: if you speak to James Major their CEO say that I suggested calling. They also run online cafes which are a chance to speak with other sufferers. They run twice a month on Fridays at 10:30 and 1:00 You need to talk to James or someone else to get the zoom link - some info is at Aphasia Cafes - Aphasia Support UK but not more than have already told you here

You do need to find some support for yourself as well because you will be taking a big load for a long time.

@EmeraldEyes always has good advice and might share some of her story because she had bad aphasia and communication challenges and now she’s quite chatty :slight_smile: and mobile even driving which I haven’t managed yet - so there is hope for your husband to gain many capabilities. But it is a long and slow process which requires effort everyday. Some Find keeping a diary so they can look back periodically & see the progress made which you cannot see on a daily basis.

Remember to celebrate all the small wins because there will be some set backs along the way & they should not dishearten you both.

That trip to the supermarket could be a goal to work towards. Identify all the things that will be necessary for it to happen and then start working on each one in parallel and when they all come together it will be a small liberation and a step towards other larger goals :slight_smile:

Caio
Simon

Hi Rachel
As others have said, welcome to the forum.
I run an online carers’ cafe on a Friday afternoon. The next one is this Friday at 3pm.

Heres the link if you want to join
Carers’ Cafe

Hope to see you

Lea :heart: