Hello. Just need to chat, new to forum

Hi everyone
Thought I would join after looking online for some support. A bit about my situation… I’ve been caring for my husband for two and a half years after he had a sudden and catastrophic stroke. We are both mid forties and have a family and I can’t begin to put into words how life has changed for all of us but especially my husband. He has had to learn everything again from scratch, such as swallow, learning how to be continent again, and still the ongoing daily struggle of speech, walking and upper limb work. His abilities are extremely limited but he is inspiring in his motivation to further improve. Because of his speech and mental/cognitive impairments he will never be able to work again.
I’ve looked after him since he came out of hospital two years ago after seven months of inpatient rehabilitation. Boy, has it been a steep learning curve!
Looking after him, two kids (one being type 1 diabetic), house, finances, etc is tough!
Fortunately, we’ve got the finances sorted (took over a year though) and are managing.
This lockdown we’re all in has made me realise I’ve essentially been in a kind of lockdown for two years! I really don’t have a life and being fairly young am in this for the long haul, for years if not decades. How do I sustain this? As I feel as if I’ve lost who I am? Does that make sense?
Would appreciate any thoughts, many thanks for reading xx

Hi Silver_freemark,

Welcome to the forum.
Before discharge, the hospital should have arranged a full package of care for your husband. Did this happen?

Hi Silver_freemark,

And welcome to the Forum. You will find a friendly bunch here and if you want to chat “over the garden fence” come over to Roll Call on the members section.

Your and your husband’s life have changed forever and you have had the caring role thrust upon you. It’s not surprising you feel a bit lost. Have you had any support from the Stroke Assocation at all? They don’t just provide support for the stroke victim, but also the carer / spouse.

I expect you don’t have much time, looking after everything single-handed. I will recommend one thing to you though and that is this book, the Selfish Pig’s Guide to Caring, which really struck a chord to me when I started caring, or at least realised that was what I was doing.

I think most of us feel trapped, resentful, lost in caring at some point, oh and definitely guilty for feeling that way. I think you need to call on all forms of support you can possibly muster to enable you to care long-term.

Take care, and I hope you find the Forum useful.

It makes perfect sense to me. I keep thinking that the lockdown has made no difference at all to me apart from making the shopping more difficult and being a bit restricted on where I can go for a walk in the afternoons. I also understand about losing who you are, my wife’s cognitive faculties have taken a big hit over the last couple of years and I often find myself thinking for her (and it’s hard enough thinking for me, :blush: without doing it for someone else).

My afternoon walks are my survival strategy, I’ve always been an outdoorsy person, worked for much of my life outdoors and also played outdoors, fishing, birdwatching and photographing Dragonflies and Butterflies, (and anything else that gets in the way of a lens). I crave seeing some green stuff every day.

Find yourself a survival strategy of some description, away from the house is best. Even if it’s tipping it down with rain, I’ll probably still go out, but instead of walking I’ll just sit looking at the view and reading a book. It’s a couple of hours with no stress and no responsibilities.


Thats good advice, and how I manage to survive caring too.

Thank you all for your replies, it’s means a lot.
Bowlingbun. - When my husband came home the transition was well planned and community care team took over physio, occupational health and after a 3 month wait some speech therapy. Social services, DWP were also involved - it was a hard slog but worked out.
Anne001 - yes, the stroke association have helped with a communication group for my husband and I was going to a carer’s group but it was stopped due to lack of people. I had a few months of counselling last year as I was struggling but the lady gave up due to personal reasons unfortunately and l didn’t want to start over with someone new. However, because of the counseling I had the courage to request a new carer’s assessment in February and I’d just got started with a careworker coming in for two hours twice a week to give me a break, but then lockdown started so all ended, for the time being at least.
Ayjay - that’s a good idea about a survival strategy. I don’t get out the house much, have relied on deliveries and maybe get out for a walk once a week at the moment. My son’s diabetes has been difficult to manage recently but have had great support from the diabetes nurse. This has frustrated my husband who wants me to concentrate on him as he’s very “self-focused” with his therapies. So, juggling both of them and then my teenage daughter (whole other story)…well… let’s just it’s tricky. I’ll try and carve out more time outdoors, seeing nature and more green will soothe my over-frazzled mind …
Cloudygal- hi there, it’s great to meet you.

Also Anne, just downloaded that book you mentioned. Only just read the beginning and WOW… thank you for the recommendation. :slight_smile:

Hi Silver,
Yes the book is good isn’t it! Yes you sound like you have a lot to deal with and you have been doing exceptionally well by the sounds of it! You say your husband can be self focassed - I wonder if the stroke has contributed to that as my mother also had a similar thing - she also became more emotional. The slight personality change took a while to adapt to. Of course I am sure your husband and my mother cope a thousand times better then I would though - I would be a total disaster,
So first of all I think you have to do away with any guilt you may (wrongly) feel for carving some time for yourself. You really really need that. The support groups are great - maybe some of the local ones have gone online? I believe a new one has just started which has “tea break” style chats - cant remember the name though! Zoom chats would be good, Could you do meditation and wellbeing courses online? I do a meditation one which is a livestream class and it helps to feel a connection even if you cant see the others!

The chat things are called Virtual Cuppa …mobilize do them. They also do one to one coaching.

Thank you A_1911. I like the idea of the meditation livestream, and I googled it to tryy and find something.
Cloudygal I have looked at the virtual cuppa timetable so hope to try one next week.


Excellent. Hope you find the Virtual Cuppa enjoyable.


Thank you susieq for the link. :hugs:

Can you carve some “me” time out of your day?
Maybe after lunch, an hour for reading, walking, sewing, whatever YOU feel like doing, as opposed to what others want you to do. I’m afraid lots of disabled people end up being “self focussed” and it’s definitely a feature of the very elderly. No one does it intentionally, it’s just that the struggle for survival seems to kick in and they want anyone who can do anything they can’t to do. Don’t need YOU but your hands, legs, thinking power etc.

What did your husband do before his stroke?
Does he have any outside male visitors his own age?

I agree bowlingbun. I am only useful in terms of what I can do for him. If I’ve tried doing other things even for the kids he gets agitated and snappy. At the moment he’s rigidity to a routine has caused some friction between us.
I’m fortunate that he goes to bed for 8pm but I’m often knackered and rather than getting on with jobs around the house I do the bare minimum have an hour or two watching telly, reading etc and go to bed. It’s lonely but at least it gives me some space. I am “on duty” still as he calls regularly and I’m back and forth helping him with this and that. I dream of having a night away with friends and getting a carer in to night-sit. Has anyone got any experience of this and how much they paid?

Have you had a Carers Assessment from Social Services? They should fund some respite for you. You are still a young fit woman and need a life of your own, to swim, walk, meet friends. You cannot be punished for a crime you didn’t commit, you didn’t give him his stroke, and he needs you to be well and willing to continue caring for him.

Hi there! I think you have done an amazing job sorting all that out yourself. I completely understand everything you have said, as I am beginning to have those feelings myself. I am a new carer for my husband who had an accident falling off a ladder, was lucky to survive , but suffered a traumatic brain injury leaving him with mental/cognitive impairments and weakness down the right hand side. He also has mood swings, and can be either tearful or aggressive. I have no young children, but two 90 year old parents to look after in this pandemic. I am starting to feel like although everyone is waiting for lockdown to end, for us it will never end. I feel guilty because I should be thankful he is still alive - but I have always worked full time, and it is a massive change for us. I joined this group to see if anyone else gad these feelings, or if it’s just me!