Hi all. My first ever time in a forum.
I’m struggling with being a carer for my husband who has a brain injury. #feelinglonely
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Welcome to the forum. My son was brain damaged at birth, fit as a flea, can’t read write or do any maths, but has a great memory for other things. How much does your husband need help with?
Welcome from me too. My husband had an acute on chronic brain haematoma back in 2013.
I am sorry that you are feeling lonely. Caring is so very isolating. Do you have a local ‘Support for Carers’? If so, it is worth making contact as they may well know of local support services.
Can you tell us a little more about your circumstances? What does your husband need help with? Are you able to leave the house for periods of time? I know my local Carers Group has regular meetings. I have a Telephone Befriender because it is not easy at the moment for me to leave the house at regular times. There may be a waiting list but they have often been Carers themselves and can offer a safe place to offload and can sometimes offer advice.
Hi @neelam2002000 and another warm Welcome to the Forum.
There can be nothing worse than watching a loved one in a situation like yours.
This forum is an amazing place where you will find support and empathy. We all know what it is like to have the worry, the feeling of not coping, the concern for a loved one, the panic if something goes wrong - the FEAR. We don’t judge or criticise as many of us have been in just the situation others are going through. Therefore we don’t sympathise - we empathise.
Forgive me giving a list of questions and comments ut it’s probably the easiest way to start helping.
@bowlingbun has asked how much help Hubbie needs - do you get ANY help at all?
Is he claiming all the benefits to which he is entitled - and are YOU? CarersUK website has a Benefits checker and it might be worth spending a few minutes going through that to ensure you are not missing out on anything. That includes claiming a reduction in Council Tax as he has a SMI.
@selinakylie has mentioned local Carers Support Service. Are you in touch with them at all? They can be a great source of local information and guidance as well as some emotional support. I joined a Walk and Talk Group tey organised for six weeks and was nervous but found it amazingly supportive as we were all in a similar situation. Now, we continue the walks ourselves every fortnight and it is an amazing time where we can share in a safe group without embarrassment (we often have tears and tantrums) and is more than I ever thought it would be.
I am sure your GP is aware of your situation, but do make sure there is a note on YOUR records that you are a Carer as that opens up sources of help for you and the GP has a Duty of Care towards YOU as well as your husband. Our GP has Carer’s Co-Ordinator (sounds painful) and I get a phone call about once every three months or so to make sure if there is anything I need and I am feeling OK - if there is anything amiss they report back to the GP and I get a follow-up.
I’ve also used the telephone Befriending service (again just for six weeks) and it was great to have a friendly contact each week for an hour.
I won’t overload you with more right now, but just know you have come to the right place to find support. WE know what it’s like!
If you get a chance, why not have a look at the “Roll Call” thread. There you’ll find a regular group of us who use it to check-in on one another and have a natter, a moan about our day, or celebrate successes - and commiserate about failures as we sound off about them! Never ANY judgement just an outpouring of love and support.
You are not alone and many of us have felt just as you do - bereft, abandoned and having to cope alone. We’re here for you.
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Good afternoon all.
My husband suffered a brain haemorrhage 2.5years ago which has left him with a lifelong left sided paralysis and sight loss. We have all the possible care/personal assistants/benefits we are entitled to and awaiting our house adaptations.
What I’m struggling with now - is the realisation that this is my life now. I thought going back to work was suddenly going to make everything better. People were saying “oh once you go back to work, it’ll be a bit of normality for you, things to talk about when you get home”… but it wasn’t. It’s just an extra thing for me to do. My husband doesn’t have the processing skills to understand my emotional needs of him as a spouse!
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Hi @neelam2002000 and welcome! My Dad had a massive stroke just before Christmas 1980. It took his right side, leaving him with no practical use in his arm, and very limited mobility in his right leg. Mum had to pack in work. The biggest problem for her was that the stroke changed Dad into someone almost completely dependent on her for help, but they were never able to have a simple cuddle, or spend any kind of time as a couple - in the sense of giving emotional support, a little understanding, etc. It hit her hard. She did find that going to a Stroke Group helped: quite a few wives were in the same position.
Stroke Groups took quite a hit during the covid lockdowns, but most are back in one form or another, so it’s worth checking your area.
In the meantime, do join in the fun…
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Thank you. That means so much. I did join wives group however I’m only 38 and all the wives are usual in their 60/70s so not quite the same.
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I understand. Mum was 44 (Dad was 52) and was the youngest in the group at the time. She also had to cope with Dad feeling the loss of almost everything he’d been able to do - driving, working, photography. I managed to find a way he could take up photography again, at least to some extent, and he gradually learnt to do some tasks independently, but he never got rid of that sense of massive loss.
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My wife has a brain injury have struggled but getting there, have you tried Headway the local group has really helped us both.
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