Shazza58, I know exactly what you mean. My wife had a severe stroke in January last year and came home on 1 April. I have been her 24-hour carer ever since (supported by four care visits per day for pad changing, personal hygiene stuff) and will remain so. It’s relentless, and although I try to stay positive and cheerful it does get to me every so often. It’s a combination of the grief and loss, the physical isolation, that I just can’t do any of the things I used to like to do myself, and what appears to be a blank future. But at least these online forums do remind us that we are not alone. Take care.
3 Likes
Have you investigated carers respite?
1 Like
Thanks for your reply, I know things could be much worse and I should be thankful fie the things my husband can do for himself. People tell me to make time for myself but what they don’t always understand is that at the moment I’m not comfortable leaving him on his own for too long and he doesn’t think he needs “baby sitting” so won’t accept carers. Regards
2 Likes
Not ready to yet but maybe in the future. Regards
1 Like
Hi there
My wife is blind, i had a stroke on the 30th of December 2021 and I’m stll depressed, fatigued , disorientated and right side weak but beteen us both we get by rather well i believe. I have had to give up taking my dog walking, got a dog walker, i have a problem with falling over and Linda my better half worries when i am out of sight as i worry about her tripping. Luckily my eyes still work so I’m able to sort out our meals, tablet’s and letters and our kids do my thinking for us, i SUFFER with brain fog, it comers on at the most inconvenient time. The worst was not being allowed to drive it really ties you down
Enough of the moans, we take life as it comes always with love and a bit of humour, we have been married over 50yrs and she’s my best friend. We also have good friends who take us out for lunch and coffee. We hopefully will continue to live our lives as fully as possible.
As Monty Python said" Aways look on the bright side of Life" what’s the point of making yourself upset you can only do what you can do what you and strive to push the barriers a bit further bit by little bit if you can’t dont worry , it’ll wait and try tomorrow . AlwAys try and smile.
Allan
3 Likes
Hi Shazza, my mam had a stroke in January and while shes been lucky in that she not been left with any physical weakness she is often very confused and can get quite angry and frustrated. Shes 91 but was very fit and active prior to the stroke. I do the majority of the caring and yes, its very hard and i cry alot, my husband is wonderful. Like your husband my mam hates the idea of carers so at the moment we are just having to cope although at 91 ultimately know itcwill have to come at some point, especially as i work too.
3 Likes
Yes i know what you mean im writing this now crying i feel so angry with him and feel so alone.we reached the 1 year mark this month and he still is having trouble walking and using his left arm hand im fed up at telling him to exercise i get to the point where i feel i can’t do this and then feel a horrible person .if he’d be abit more motivated we can go for days and don’t speak only when he needs help im at my wits end
1 Like
Most of the family seem to have disappeared my daughter doesn’t understand and just gets angry with me as for my husbands family don’t hear from them my husband is a person who doesn’t speak about how he’s feeling and worries and analysis every thing thats probably what caused his stroke high blood pressure im glad i can come on here and rant you will probably here from me soon
3 Likes
There are support groups around for carers including giving respite breaks
You might find one amongst this list
1 Like
Do you get out of the house, away from your husband, how often and for how long.
How do you get your groceries?
Hi my husband had a brain bleed 3 years ago. He has cognitve impairment and aphasia. He also has cerebral amyloid angiopathy which apparently caused his stroke as well as high blood pressure. He regained his upper body well but still has issues with his right leg and walking. He is very motivated to improve on his recovery but is not very good at self initiating his exercises or activities. I find i have to organise all of this for him, he can longer drive and everything he does including walking takes such a long time. He suffers from fatigue but tries to fight through it. He is generally happy and positive which makes my caring role easier.
I can now leave him alone for up to 3 hours at a time depending on how he is feeling. I walk my dog for an hour every morning which sets me up for the day. When he first came home from hospital i didn’t think i would ever be able to leave him . I had to allow him to manage his own risks to a certain degree which i found really hard, still do some days. We have found our own way through this and you will too. Good luck to both of you.
2 Likes
Coming up to the 4 week mark of my partner’s stroke so it’s still early days. A clot‘s left him paralysed left hand side, getting some movement back in the leg but arm and hand steadfastly not responding yet. Speech and swallowing has improved. He can now get from his hospital bed to wheelchair with just me helping. We both consider he’s come off relatively lightly but know our lives have changed.
I’m now getting to that point where holding my breath and ploughing through it all…well the cracks are starting to show. I’m so tired but can’t sleep. Taking a couple of the old type of antihistamine, the 4 a day ones, helps me get to sleep. I asked my doc about it and he said it wasn’t a concern for me to be taking them this way, your situation may be different. That exhaustion and fog are similar to that I had when suffering from bouts of moderate into severe depression and I recognise it as an unwelcome visitor but at least all the therapy and sessions I had to undergo for years has prepared me in a weird sort of way…
He has some very low and emotional periods which know will happen. And I try my best to lighten him …and I really try to hold my s*it together when in front of him. But after the physio took me on one side and told me she wanted a ‘home visit’ to assess the house in prep for return, I was fine until I sat with him and in an instant, that tsunami of emotion just overwhelmed me and the tears flowed. I’d promised myself I wouldn’t to do that in front of him. I think it was just reaction to something positive that was going to happen out of a mess of uncertainty.
So far I’ve cleaned the house, scrubbed carpets, walls and ceilings to an inch of their lives. I’ve been for walks and watched the sun rise and shared the moments with him via WhatsApp. I lovely friend who’s just lost her husband told me she tries to see or do something beautiful every day…watching the moon with the dog, observing and listening to a bumblebee in the garden flitting around the flowers. It’s something I’ve tried to take on board and I remember now it’s something that was encouraged in the depression therapy I had a few years back. Have a small note book and pencil. Try and note down something really good each day that you’ve experienced . You can open the book when you’re low and realise good things are still happening to you.
On the way back from the hospital this afternoon, I had my phone connected to the car system and was playing some playlists from Spotify (the free version…). I’ve always been an introvert but singing my head off whilst driving trough town …well I think it helped. Also allowing yourself to tell friends and family that you are fine but you don’t have the energy to talk with them at the moment can we do it tomorrow is OK too…
Once he’s home I’m going to have to include a selfish couple of hours per day just for myself. I think it’s really important to get tired in a healthy way, … a routine of some good physical exercise. A bike ride, swimming every other day, gardening…sofa yoga! I found it really helped with depression and it has to go somewhere to coping with this.
Not sure what the future holds but I’m determined to be positive about it.
4 Likes
I am a big blubberer at the moment! My Mum had her stroke 8 days ago. My brother lives in scotland so it’s me, Mum and Dad. I live 2 mins from them by car.
My Dad is 85 and still very capable and switched on, he does have a bit of short term memory loss generally but just simple old age - he was a geophysicist so super sharp in his time, so what he sees as bad is good!
My Mum is 77 - what lies ahead for her is yet to be seen, but I know when she’s home (please God) that my Dad and I will be her main carers. Dad will take the lion’s share but I need to make sure he is well supported too.
So I know this is going to be a huge life change for us all.
I live alone, work as a self employed driving instructor (currently not working with all this going on) and do worry how I’ll cope.
I’m great when I visit mum, very practical and upbeat, but if a friend hugs me or someone sends me a lovely message I’m off with the tears.
I think it’s best to let it out, crying is a stress reliever and god knows this is a stressful situation for us all x
1 Like
Hi @Pusscat
Love your screen name 
there are a few evocative names amongst users here. You’re very welcome as a new user although all of us will be expressing our sorrow that you have had cause to join us. this site has many people who have travelled the road ahead of you, are empathetic, knowledgeable, wise and, Will happily share their insights.
as a group we are pretty much anything goes so feel free to ask questions, celebrate successes, rant when you need to let out a cathartic screaming or anything between.
You’ve said yourself it’s early days and the reality of that probably doesn’t match the simple fact of the words. So recognise there is a lot of adjustment even if you currently have got to recognition. That’s a really valuable step but not the end of the road .
When I had my stroke I was really more concerned for my wife than myself because I knew that the medical profession would see me but they wouldn’t see her, & that she would have a greater need. I think I was right. And I think I read in your post that you have needs as a carer for information, for making it all make sense - so my biggest single piece of advice is seek out support for you and lean on it as heavily as you can because you may have the energy of the beginning but this, as many of us say is a marathon not a sprint .
There’s a welcome post here click this blue text. Amongst much else it has a link to support groups of which there are hundreds across the country for stroke and hundreds more for mental health and other needs - part way down there’s a postcode finder that brings up a map
Your notebook is a really good idea and so is your friends gazing at the moon with the dog.
I will load to YouTube and post a link to my wife’s video from when I went into hospital and a follow-up video later.
I hope that they will show you that her despair while justified in the moment has been the birth of something good subsequently.
I suspect you’re scrubbing carpets within an inch of life is a displacement activity born of this & maybe going out for a coffee and cake maybe with a friend would be a better alternative? While it’s not stroke related Lea might tell you about singing to led Zeppelin full volume in the car in a zoom call - she runs or perhaps that’s ran the stroke association carers cafe ( we have a meeting tomorrow to discuss the future of) but she’s still happy to talk to people 121 -let me know if you want to talk there’s also a cafe at 1:00 today You’re welcome to join that link is https://bit.ly/StrokeThuCafes
I like the vision of sofa yoga. I know what cat yoga is I’ve just had to move Beryl The Barrel from where I want to eat my breakfast and I can imagine s sofa yoga but maybe you’ll give us more description later?
Me time is important. Lea has Monday mornings in her pottery studio, Thursday afternoons in her belly dancing class and various other things. they are me time as well for me when I can do things like mend my shed roof without her seeing that I’m on a ladder. I could more or less walk when I came out hospital but I still don’t have a working right hand so ladder was something of a challenge for the first year indeed it’s still a challenge
I agree that you don’t know what the future holds. But if you go to the welcome post and you do the suggested search you’ll find that it could be better post stroke than you had imagined when stroke wasn’t in your vocabulary, by all means grieve for the old life to mark the transition but then embrace the new
Ciao
Simon
2 Likes
@nsw72
I suggest having a good blab when you’re receiving a hug from a friend is what you should do. Then it gives you more capacity to be strong without being fragile.
While it’s only been a few days it does seem to me that the themes that will grow and need embracing are already within your thinking
while you don’t know with hindsight what to do the rest of us who do have hindsight maybe able to observe that you look as though you’re doing very well and would encourage you to keep doing what seems right because your intuitively doing what we found was right too
Stay strong
Simon
2 Likes
Thanks Simon, that’s heartening to know.
I know I’ll get through this and find a way to cope with this new life we will have, it’s just a case of trying to be gentle with myself.
I am not used to being off work as I work for myself, no work, no income. And no fallback person to help. But I just can’t possibly teach right now, my mind is completely focussed on Mum (and Dad) and I have to keep reminding myself we are just only into our second week, things will settle a bit and ‘normal’ life will creep back in to some extent.
In the meantime I’ll be praying to God, Jesus and Billy Connolly to help !
2 Likes
i said id post to yt from Lea’s vLog
https://www.youtube.com/playlist?list=PLC9GO6zyMs7t9p2nJkwtYJDZkEeA_lD9d
1 Like
Well…I just watch those Lea’s video and all I wanted to do was wrap my arms around her and give her big hugs 
And you both look so adorable and happy together in the second . . . but one question . . . where’s the Scottish accent 
Lea just said to me quote We issnee Scottish hen”
I’ve said a couple of times on here I was born in East Ham East London and Lea’s from originally surrey but neasden till her 20s
We’ve been here 27 years I think. The kids have Scottish accents, well the daughter does the son has the accent he wants to choose. We lived in the lakes before moving here where “mommy I want a bAth” was the prevailing accent so Toby can put on Essex and Edinburgh & pretty much everything else - he now lives in Dubai I think that’s Scottish gives him a little bit advantage over an Essex own
1 Like
Yes you have mentioned where your originally from…now that you mention it 
“The only thing faster than the speed of thought is the speed of forgetfulness. Good thing we have other people to help us remember.”
It’s a quote from my collection . . . but I can’t remember who from 