New member saying hello from Devon

Just found this community so thought I'd say hello

My wife suffered a brain heamorrhage 18 months ago, and has been home from hospital for 9 months now. Her physical recovery has been excellent, but her cognitive state is still severely impaired. She has both expressive and receptive aphasia which makes communication anywhere between extremely difficult and impossible. Naturally, she finds this frustrating, and often infuriating.

Even though she has pretty good physical health and mobility, she can't really be independent for anything other than an hour or two in the home. Small tasks often require assistance if something becomes too frustrating, or she may lose sight of being safe and need to be rescued from her own lack of awareness.

I care for her full time, and as you can imagine, I'm finding it really hard. I've managed to hold onto a tiny bit of my work (self-employed, work from home thank goodness) but it's not enough to keep us afloat. I applied for carer's allowance nearly 5 months ago, and after being denied at first (because I earned too much money - wait for it - BEFORE I became a carer) it's now under mandatory reconsideration, and has been for more than 3 months.

I won't bore you with the little details - I'm sure everyone here's got enough story to tell that we could start a library. Just saying hello really. It's nice to be here, thanks for having me.

Anthony

31 Replies

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  • Hi Anthony, welcome to this amazing group of friendly people. Sorry to hear about your wife and how difficult things are. I didn't suffer with that so I'm not much help but there' are a few people who will come along and be able to advise you how their recovery was. You sound like you're doing your absolute best so always remember that. I don't get allowances but totally sympathies with you, life can be so unfair. Best wishes to you and your wife. Xx

  • Hi Peaches

    Thanks for your welcome and kind words. This seems like a wonderful community - I can't believe I've only just found it. You're right about life being unfair, so I'm trying to stop expecting it to be. Best wishes to you too x

  • This group is a godsend! That's a very wise answer as you'll find most of us agree that until we learn to adapt to our new situation and accept things for what they are nowadays then we can't move forward. It's hard some days but you'll soon see that folk on here are very open so don't be shy if you ever need to vent. Xx

  • I totally agree with the last post, it's hard to move on until you accept. I am nearly 5 yrs on from my SAH. There have been significant improvements for me in the last 2 yrs. it's not all a steady improvement.

  • That's really interesting gj, and just goes to prove brain injuries are as individual as the people who suffer from them. Really glad you've seen improvements. Long may they continue. Thanks for your reply

  • Hi Anthony welcome to the forum you'll find everyone very friendly on here.

    Angie :-)

  • Hi Angie, thanks for the warm welcome. It's nice to be here and you're right so far: everyone's been really friendly :)

  • Its a great forum Anthony everyones can understand your symptoms or the stresses of caring for a person. So there's always someone who can empathise or if wanted advise. We're all fighters, survivors.

  • Hello and Welcome Anthony. I'm sorry about your wife's haemorrhage and her subsequent difficulties. It's a life changing event isn't it, and you've obviously gone through quite a learning curve this last 18 months.

    I had a Subarachnoid haemorrhage over 5 years ago and can remember that the first couple of years were the most tricky as I wasn't ready to accept my limitations.

    Now though I, and those around me, have reached an equilibrium and life has become more manageable and less 'weird'.

    I find the receptive and the anomic aphasia are still both frustrating issues, but I'm still thankful for how far I've come !

    I hope, with even more time, you and your wife can find more ways of coping with, and finding ways around, her various symptoms and residual problems.

    Please keep us updated on how things are going and if/when your claim for carer's allowance succeeds.

    Best wishes, Cat x

  • Hi Cat

    Thanks for your reply and so sorry to hear about your heamorrhage and brain injury. I'm impressed at how well you can write/ type though. I know aphasia is different for everyone who suffers, but my wife has problems with any expression of language, be it spoken, written, read or heard. Did you have difficulty writing too, because if you did, I'd say you've made a remarkable recovery.

    I'll be sure to keep you up to date with my benefits. Thanks again for sharing your story.

    Very best wishes to you :)

  • My main problem Anthony is word recall. I'm often so furious at my inability to find everyday words that I'll just give up on a conversation and clam up. I used to revel in debate but can no longer compete.

    And a post which probably looks like it took a few minutes to compose will have taken anything up to an hour. That's the beauty of the forum ; it allows us to appear equal.

    Also, reading great swathes of text can send my brain into panic mode so I rarely read newspapers any more. Though I have returned to reading books, but only a few pages at a time.

    I hope that your wife's issues will improve with further time and practice ; it's usually a slow process, but progress is attainable with daily brain training such as doing crosswords (simple ones to begin with) and other puzzles or apps. :-/ x

  • Hi Anthony. We are 4 and a half years on from my husband's brain haemorrhage and stroke, caused by a ruptured aneurysm. Life is difficult, but it does get easier in some ways. Hang on in there, you are doing an amazing job!! Molly

  • Thanks Molly! It's nice to know there are people here who understand what I'm going through. I don't feel like I'm doing an amazing job, but I am doing the best I can under extraordinary circumstances.

    I hope you're managing to get what you need out of life in spite of this awful illness.

    Best wishes to you and your husband

    Anthony

  • Sadly, things are not good at the moment. After 4 and a half years, life has become increasingly hard to cope with. My husband has had a huge personality change, and at this moment in time, I have come away for a few days on my own, the first time ever since he was taken ill. The feelings of guilt are huge, but life is too short as we all know, to be unhappy for whatever time we have left. I am not sure where things will go when I get home in the next couple of days, but I know that anyone who lives with this is doing an amazing job, and no one who has no experience of it can ever understand. I have been staggered at the reactions of his close family and friends, who have almost all abandoned him. I have never had any help, never had carers in, and looked after him on my own. He is now in a position where he can live on his own if the time came, without too much hardship, but it is the guilt that is making it so difficult to make any final decision. Sorry for being negative, and I hope with all my heart that life is much easier and not so complicated as it is for me at the moment. All the very best, Molly x

  • I'm really sorry to hear that, Molly. My experience is a little different though in that my wife's personality doesn't seem to have changed a great deal, although when (if) her speech returns I may get a shock? I think you're doing the right thing taking some time away. 4 and a half years is a long time to cope with this without any support. Your husband's friends and family abandoning him is terrible. It sounds like you've been incredibly strong.

    Please don't apologise for being honest. There's no point in pretending everything's brilliant - to yourself or anyone else. I really hope you find a way through this that works for you and wish the best for both of you.

  • Welcome! i too have a husband with B,I he is doing well having had second op to reamove more tumor,hopefully they have got it all,radiotherpary next i bealive. It was a beighn menginomai. Keep fighting for your benifits! turn2us maybe able to help and so could Headway. take care of yourself and seek support where you can get it,you full time carers are true heros!

  • Thanks Razy. I already asked my Headway support worker to write a supporting letter which I included in my original application. The DWP seems determined to play the long game with me, so I'm just going to have to run with it. There's nothing I can do. Really glad to hear your husband is doing well after his op and that they've got it all as you say. Sending very best wishes to you both

  • Hi Anthony

    Im so sorry to hear about your wife... i had some aphasia but over time things have improved although some days such as today i am having trouble with my speech.

    My husband struggled for ages also to get carers allowance as he was self employed and also... he did get it eventually though. Although he is about to lose it again as he is due to get his state pension... curses chiz!

    Lovely folks here, carere and those of us who have a bit of baggage too.

    This place will help keep you sane..always call in if you need a bit of virtual support

    love Tired Nan xxx

  • Hello Tired Nan! That's a good username you have :) Thanks for sharing your experience, and I'm glad to hear your aphasia has improved. From what I've heard it's not uncommon that difficulty speaking can crop up after recovery when you're tired or under stress etc. I'm finding it hard to stay hopeful though as my wife doesn't seem motivated to do her speech therapy practice, yet gets extremely frustrated when she can't make herself understood. If I put those two things together when she's frustrated and suggest that daily practice would make a big difference it usually goes down like a lead balloon. That exact thing has just happened, hence I'm in the other room talking to you lot, hoping she'll calm down soon.

    How does the state pension compare to the carers allowance? Sounds like it could be quite a blow to be losing it. I would have thought they'd have some sort of care component available for pensioners too? Mind you, the way things are going, we'll be lucky still have an NHS, let alone welfare benefits... Sad times.

    Your writing is really good considering you've had aphasia. Best wishes to you and your husband

  • Sorry to hear that your wife is reluctant about speech therapy, you must find it really frustrating . The mood swings too...

    To be fair ....the effort of the therapy probably seems a huge mountain to her and a huge effort. I'm so sorry that you are taking the brunt of her feelings at the moment. Fingers crossed for small steps forward ...

    Well with the State pension husband is about £50 a week better off but he hasn't got full NI contributions for a full pension. Not sure there is anything he can claim as ironically, I have quite a good employer pension since I took ill health retirement so really its in hubby's interest to keep me going lol!

    You are doing great... we know how hard it is for you , take care of yourself also and try and find time to get a break.. Fridays my hubby gets out with his mates.. try and get a break whenever xx

  • Thanks TiredNan. It's ok, I don't mind taking the brunt most of the time, and I'm quite good at not taking it personally (with the odd exception). I just worry about her quality of life and get so sad when I see her continually angry, frustrated, upset and all the other difficult things.

    Getting away is a bit of a sore point at the moment - I desperately need some respite, and while social services have arranged it, it's been beset by problems from the outset. First chance I get I'm going to drive to the seaside and just sit there all day with my dog! Might even get a bag of chips.

    I too haven't paid enough NI to claim the full pension when I retire (although by the time I get there, they'll have probably scrapped retirement altogether!) - I could pay in voluntarily, but that would mean having to earn more, which is impossible given my caring commitment.

    Thanks for replying; it's nice to talk to someone who knows and understands. It means a lot actually x

  • Hi and welcome. I read all the replies above and don't have much to add other than have you tried playing word games or singing with your wife if she's reluctant to do speech therapy exercises? It may not be appropriate so sorry if I've suggested somethung unsuitable, but it's an alternative option which is still technically still involving speech. A year on and my speech (so I told) is wonderful, but I still end up with jumbled words when I'm tired or stressed, and interjecting unnecessary little repeated phrases when I'm stressed or frustrated. I've stopped inappropriate language use just about, but have had help from neuropsychologist with this. Everyone injuries affect different parts of the brain, and I found myself for many months talking to myself aloud which can be disconcerting. I'm pretty well getting that under control as well now. The neuro team visitor told me quite early in that 'what I put into it' would affect what I got out of it as far as recovery goes, and I've found that to be true. I've stuck wit the puddle books and brain trying apps. It's all got to help even if it's not very noticeable now. I wish you all the best with your claim and good wishes for your wife recovery. :)

  • Sorry that was meant to be puzzle books. And brain training apps, although they sometimes are brain trying as well!

  • Thanks Elenor. Yes, we've been told many times that the people who make the best recoveries are those who work hardest at overcoming their difficulties. It's just that my wife either isn't yet able to accept what's happened to her, or doesn't believe she can get better. Generally, she is very motivated when she wants to achieve something, and I'm really surprised by how she doesn't engage with speech therapy. Still, I suppose there's no point me analysing it. She either will or won't recover her speech; I just miss talking to her so much...

    We do sing together from time to time, but she's not hugely motivated by that either. She shies away from any activity that's speech related - and yet, she's happy to try talking all day long, so long as it's not in a practised way. Maybe that will be enough on its own?

    I'm so glad you've got your speech back, and thanks for sharing your experience with me. Best wishes to you also :)

  • Do you have community neuro team visits? Perhaps ask thrm for advice or other strategies? It really seems to be the case that this can take a very long time. I think I'm only just now realising that this is how things are going to be from now on and it seems your wife had more complex problems to overcome. It may just be time that's needed.....but do take advice if you feel things aren't progressing the way you thought they would. Good luck to you both :)

  • I wasn't aware that there was a community neuro team... She has regular Headway visits, and there's a speech therapist on the scene (as of last month) but there's nothing in the way of nursing support. She did have an occupational therapist, but she didn't like her! So that didn't work out... Thanks for the advice; I'll see what else I can find out

  • Hi Anthony

    Just saying hello from one carer to another. My situation is a bit different in that we don't live together so he has support workers during the day and I take over in the evenings and weekends. I won't ramble on about his injury as my profile will probably give you the idea.

    I'm in Cornwall and it was quite a struggle getting the right level of support to start with, is Devon similar or are you getting good support?

    I don't often comment on this site but it's good to read stories from others in a similar situation and swap stories. Hope you're finding it a help.

    Jane

  • Hi Jane

    Thanks for your reply and kind words. To be honest I don't even know what the right level of help is. My wife is pretty reluctant to engage with most activities, and since I work from home I'm here to keep an eye on her anyway.

    I'm definitely struggling to get help to identify and implement the right kind of support, particularly in regard to respite care. In spite of three 'emergency' meetings with social services to organise this, I still haven't had more than 4 hours off at any given time.

    I have no idea if this is a Devon thing or just an underfunded NHS/ social care thing. The message I'm beginning to hear is that if you don't make a big fuss, nothing tends to happen - and I'm not a big fuss maker, so maybe that's the problem...

    I hope you and your husband are doing ok. Nice to hear from someone local :)

  • Hello,

    what part of devon are you from?

  • Hello Bexx

    We're just at the top of Dartmoor, near Okehampton. Are you a Devoner too?

  • Hi no Im from Bristol but I visit Dawlish frequently as it was a place my mum took to before and after my BI so its very special to me

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