Post brain hemorrhage

[Browns12]

Hi my husband had a brain hemerage on the 10th of February, he is home now which I'm grateful for, but since he has been home I've had no help from professionals, he is walking and talking it's affected his short term memory I give him little tasks to do but he just watches the TV all day, I don't know how far to push him because I don't know if I would be doing more harm than good, I just feel so alone in all this. I do get upset sometimes then feel guilty because he doesn't know what to do or say. Any advice and support would be appreciated.

[New_beginning]

Did hospital say anything on discharge, I would contact his GP they can help chase up professional support, however I have lost faith in system. My husband home 31st March 2020, despite daily support mentioned, nothing until June (10wks later) then home visits weekly until December then January 2021 nothing until end of April, weekly visits mentioned but nothing scheduled, new member came in blind, so spoke with brain injury team they are to arrange joint visit, I was meant to hear today, nothing.

Keep chasing ,sadly I dont know how long this takes, what to expect, what is meant to be normal process now with timescale now,

[Browns12 in reply to New_beginning]

Hiya I spoke to rehab nurse few days after discharge he said he was going to ask for an ot to give me a ring and also someone to support me, I'm still waiting.Because he is walking and using all his limbs he doesn't need home support which is fine but I feel I need expert advice for his recovery. It sounds like we are in the same boat it's so frustrating. Feel free to message me any time maybe we can help each other some how

[twice]

Hi

Unfortunately this happens far too often after hospital discharge, I had a Tbi with a subarachnoid haemorrhage and I also was sent home to get on with it without any help or advice about what to do and what not to do, I was living on my own and didn't know who or what I was most of the time, it took me 2 weeks before I could understand the discharge letter I had been given and realised that I needed to get it to my gp. I don't remember much at all about the first month or so and all I can suggest to you is that you call the headway helpline in the morning and also the hospital where your husband was at and explain the situation you have been left in. I am so sorry you and your husband have left in this situation.

[cat3]

This is all too common sadly. I was hospitalised for 3 months after a Subarachnoid haemorrhage and eventually discharged into the care of my GP, which is standard practice for patients who are mobile and cognitively aware. But as most GPs have poor understanding of brain injury we're often left with inadequate support.

I eventually asked for a referral to the neuro team but had to wait almost 12 months for the consultation. Talk to your GP and ask him/her to chase up rehab. Please bear in mind though that three months is very early days in recovery terms and your man's brain is still struggling to make sense of everything and desperately needing complete rest.

The tv will be a comforting prop allowing him to avoid more demanding interaction. Coping with the immense fatigue of a brain injury will be an uphill struggle requiring time and patience 'til he's stronger and able to start testing his boundaries. Coax him m'dear but don't stress over his lack of interest right now ; this is a long process. In the meantime phone the Headway helpline on 0808 800 2244 for further advice and reassurance on coping with your husband's issues. Best wishes, Cat x

[lcd8 in reply to cat3]

Great advice as always Cat. Couldn't have said it better myself. x

[cat3 in reply to lcd8]

xx

[Trevor78 in reply to cat3]

Nothing much changed then. I had a TBI 40 years ago leaving me with left side paralysis, balance problems, a facial palsy that gave eye problems amongst other injuries. I was put in the hands of my GP who did his best but it was the eye consultant who knew about, and got me sent to, Addenbrookes' Rehabilitation Centre after a couple of years.

[cat3 in reply to Trevor78]

Hi Trev. It's 9+years for me and still no joy in finding treatment for poor balance. ENT and medication treatments haven't stopped me frequently coming face to face with the ground so I'm going to try the optometrist route next. Good to hear you found someone knowledgeable to get you into Addenbrookes though !

But yes, little has changed and luck still seems to play the biggest part in aftercare.. 😦

[cat3 in reply to Trevor78]

No Trev ; It seems that aftercare is still mainly down to luck in most cases.

Good to hear you found someone prepared to step in and find a rehab placement at Addenbrookes though. After years of failed attempts to find the root cause of poor balance I've decided to ask my opthalmologist about trying the optometry route. I'll try anything....

Hope you're doing ok... x

[Trevor78 in reply to cat3]

Yes I'm doing ok thanks. Recovered to a decent standard in some respects (ie worked for 30 years so managed financially etc) but not so good in others (never recovered socially or emotionally to enjoy life to the full) and am left in a bit of a mess now tbh but it could always have been much worse.

[cat3 in reply to Trevor78]

Sorry to hear that. Are you in contact with family / friends ?

[Trevor78 in reply to cat3]

I have a brother (who's quite distant), sister & niece (who came along after my TBI so I always felt that unfortunately she doesn't know the real me as I do and would like) left so there is a bit of support there in that respect which is good. Over 30+ years I've been so wrapped up in myself that I never made any real friends. Yes I know people to say hello to but I couldn't class them as significant friends in the traditional sense or being part of a social circle that is apparently so important for our wellbeing.

[cat3 in reply to Trevor78]

Many of us here have lost contact with friends who can't grasp the life changing nature of brain injury. I was pretty outgoing previously but now (& even more so since Covid) my social life is zero.

But I'm in daily phone contact with my son and daughter and get on well with neighbours, and quite happy with my own company.

This forum is good for me mental health-wise. Word recall is a big problem for me in face to face interaction, but here I can take time to say what I want to say .....in my own time !

I hope you'll stay around and share stories with us all Trev ; it's been a lifesaver for me. 😐 x

[Browns12 in reply to cat3]

Hi thanks cat3 I have 5 children 4 of them married so they keep me on my toes I'm in regular contact with them they find it a struggle to see their dad like this, this forum has helped a lot with all the advice

[cat3 in reply to Browns12]

Can you find respite now & again Browns ? It's so important for carers to have occasional space for stepping back from the intensity of one to one care. I wonder if that can be arranged....

Enjoying some stability and control in a local park or café, if only for an hour hour here & there, can help in keeping stress levels down during this testing and (possibly) claustrophobic period.

Thinking of you m'love 😏

[Browns12 in reply to cat3]

I have got a cleaning job 3 times a week so I can leave him for short periods, he is always in the same place when I get back in front of TV but I do worry when I'm away from him x

[cat3 in reply to Browns12]

It's good you're having a frequent change of atmosphere (although pretty tiring flitting between work and home duties). Your man will benefit from complete relaxation, and TV is ok for keeping him company whilst his brain is still recuperating.

I slept 16 hours a day after discharge from hospital, but eventually became curious and restless for activity, leading to a return to life.

Give it another couple of weeks then gradually start distracting him from the TV by switching off and insisting he come and eat at the table, engage in some conversation or maybe take short walks. Reintroducing him to the outdoors is vital for his fitness and to boost feelgood hormones.

One step at a time is the key in the long recovery process. You might feel you're getting nowhere but, hopefully, you'll look back in the Summer and see just how far he's progressed.

But do keep on at the rehab nurse to chase up the OT people ; maybe ask for their contact details so you can contact them direct. There's loads you can do together to promote progress, but help from a therapist would be a massive bonus.

And stay around m'love ....we're always here to talk. Cat x

[Trevor78 in reply to cat3]

Interesting point about Covid. I was ticking along in March 2020. Nothing special but had my routine that kept my fragile mental health in check and got me out and about daily. Then it all changed. Been working at home feeling isolated for 14 months with little else to ease the anxiety and confidence loss. Damage has been done. I don't know whether I'll ever get back to where I was. That's twice in one lifetime that I've said that (and I didn't make it first time round). The upside is that I've had a dog for company and he needs to go out and generally looking after 24/7.

[cat3 in reply to Trevor78]

You will make it Trev (you have to for your dog's sake !) It's been an unprecedented 14 months of isolation and anxiety for people worldwide, and if you can focus on the fact we're all in this together and all waiting it out together, maybe it'll take some of the sting away.

I've felt the depression starting to hit over the past couple of months (have a long history of clinical depression/panic attacks) but refuse to let it invade my life again !

Keep working and walking your dog and hanging in there Trev .....and stay around here too ; there'll always be someone to help you pick yourself up and dust yourself down ! 😏 x

[Pairofboots]

Hi Browns, I have heard this a little too often. The neuro rehab team should be involved as of discharge, so I would chase the hospital and the GP.

Contact Headway, their contact details are somewhere on this page. They can offer help and support for both of you, and give you an idea of what is required.

Hope this helps.

[Browns12 in reply to Pairofboots]

Thank you for your reply it means a lot

[Mikey48]

I suffered a Subarachnoid haemorrhage on 23 Dec 2015. It was coiled and I spent a month in hospital. This was followed by 2 months in BIRU (Brain Injury Rehabilitation Unit) in Bristol and they were fantastic. I was fairly cognitive after my initial recovery but they built upon this with a programme of mental and physical improvement until in the end I was pestering to let me home. After a meeting with my family and a visit to my home to make some modifications check I could manage stairs etc they made a few modifications to the bathroom and I was allowed home on 7 March 2016. The brain injury did exacerbate an existing knee condition but they got me onto the waiting list and the following year I had a partial knee replacement. Mentally I've had highs and lows and taken nothing for granted. It is a long slow process but you should at least be getting support from your GP and I'm sorry if this is not forthcoming. Cat's reply, as always was very helpful. Heed it and take comfort from it. Things will improve, really they will.

[Browns12 in reply to Mikey48]

Thank you I think I've been to soft I will put my foot down

[Impshy]

TV and rest is the best thing right now. I had a subdural haematoma two years ago, and all i did was nap and watch TV. Even tiny tasks wore me out completely, so just treat it like a arm or leg injury, and rest up. I didnt have any back up from the Hospital at all until i went to my GP and asked her for some help. She was really surprised theyd just turfed me out without a follow up, but i think i had some visits from Occupational Therapy or similar, just for my mobility etc.

i definitely found all my senses and reactions were kind of dampened when i came out, so i was kind of in a daze a fair bit of the time. it wasnt for a fair few months before i could get on with anything really. Big hugs to you both. its such a scary time. everyone says how lucky you are not to have died, but i think adjusting to new life is still pretty traumatic. xxx

[Browns12 in reply to Impshy]

Thank you for your advice and support it means a lot

[Shreds]

Yes, rest and no trauma is whats best, so let him be for now with the TV. Maybe in time suggest very short walks (if he is up to this) and is mobile, together. The exercise will do him good, but at this stage dont push him. As well as giving small tasks, it may assist if he feels empowered and you take occasional suggestions on what to do from him. But dont back him into a corner or be overbearing (not suggesting you would!) or he may feel ‘controlled’.

Every case is different, go little by little and if you keep a diary, you can chart the progress even when you might have felt there is none.

Plus of course all the advice from others here and do come back and keep us updated with progress. Make this your “safe place” too, as you will need support and encouragement for the road ahead.

[Gordo6500]

Hi Browns , here in the U.S. the treatment is the same , almost none. My instructions after discharge were rest and eat a high fat diet. I followed up with my primary care Dr. as instructed he had no idea what to do for my TBI symptoms. So I pretty much treated myself. What I have learned is 1. Get active have your husband go for walks or any kind of exercise 2. Unplug from technology limit tv and computer, phone time for a while. 3. Good nutrition leafy greens , limit sugar, use good fats Omega3 , olive oil, coconut oil , high protein meat, fish, chicken. What helped me the most was going to Braincare.com and reading this book called When Brains Collide there is an Omega3 protocol he can try our brains are 40% Omega3’s and a good multi vitamin with B vitamins . Most Drs. don’t know how to treat a brain injury. There is a lot more he can do . I’m not a medical professional, I’m just telling my experience. I hope this helps.

[FCBurr]

Hey Browns!

Gosh I'm so shocked at your situation and the amount of responses with people who also had no direct aftercare! I had an epileptic seizure at the top of my stairs and suffered a serious subdural haematoma and was in a coma for about a month and had a cranioplasty and all sorts of other stuff. Four years later I'm still in fairly regular contact with neuro rehabilitation staff as I juggle life after the accident.

My advice to you is, as the "neuro-typical" one you can chase, chase, chase. I still rely on my close family and there's no shame in it! You don't yet know how the brain injury has affected your husband, other than the short term memory change etc, so there could be a whole load of things to manage.

I'd suggest you call up Headway on their free, confidential helpline: 0808 800 2244

There'll be a local group who can help directly! They not only give incredible advice and positive strategies, they are great at helping direct you to those who absolutely need to be there from a medical point of view.

Their website is: headway.org.uk/

You can contact your GP over and over again and ask for help (I'm sure Headway will give you a clearer way to do this but in the meantime it's worth a try haha). A brain injury is an invisible illness so really hammer home the difficulties! There's no need to exaggerate - i wouldn't mention how he can walk and talk, that's a wonderful bonus for you all but people often see that and think, "oh he's fine then!" and leave you to it.

Best of luck, be as patient and understanding as you can, he's so lucky to have you!

Francesca

💖

[SAHsurvivor]

I had mine in May last year, I find TV quite difficult.but I rarely watch ed anything before SAH either. Most I can watch is 1 episode of something each day, word searches simple quizzes may be much better at the moment. Quiet soft music maybe! Only offering what worked for me

[Browns12 in reply to SAHsurvivor]

Hi yes I was thinking of getting him some word search books I will let you know how he goes on. Thank you