9 weeks in... Everything has changed.

[MaryLou13]

Hi, I'm a little nervous posting on here. 9 weeks ago today my husbands heart stopped. We were in bed and I thought he was having a nightmare...but he wasn't. I did cpr until paramedics arrived and they shocked his heart etc. He was in a coma for just over a week and I was told he wouldn't recover. To cut a very long story short he is home as he was not thriving in hospital. He was supposed to go for neuro rehab but the Drs think he will do better at home. I've been told he has had a hypoxia brain injury. He hallucinates sometimes , says things that are not true (confabulation?) and has no no short term memory. It's very early days and after a visit from an ot on our local brain injury team I've been reassured I'm doing everything right but if anyone has any practical neuro rehab type strategies I could try I would be really grateful. I'm currently using a daily list on a whiteboard which we tick when something is done, photo diary on phone, a pill reminder on phone and a written diary. Everything has changed and it's all a little scary. X

[razyheath43]

yes it is scary! as i say i bet you are feeling rather duran duran at the moment! (there'rs a fine line drawing my senses together and i think its about to break!) Sounds like you are doing what you can,please ring the headway helpline they are AWESOME! and can put you in touch with support local to you,support for both of you! Take care of yourself as well.

[cat3]

Hi Marylou and welcome. It'll be more than a little scary suddenly being thrust into a position of such responsibility. In caring for your husband's needs your relationship will have changed dramatically from an equal partnership to a very one- sided, and probably quite isolating, one.

It looks like you're doing everything possible to keep your man safe and comfortable and the best regime will be whatever works best for you both on a daily basis.

You might like to phone the Headway helpline on 0808 800 2244 (office hours-free call) where you'll hear a friendly voice, and find specialist advice and support in caring for your husband.

All best wishes, cat x

[sca2013]

Bless you. So sorry your on this journey.

[Hidden]

Hi MaryLou, you have found the right place! I would only add that some practical tips for you to try can be found here: unforgettable.org/blog/10-u...

Best wishes!

[CJDA94]

Hi MaryLou13, I've been waiting since I saw your post to have time to reply properly but I don't know where the days go and again I'm in a rush but hopefully I can write something helpful. This exact same thing happened to my husband in July 2014 so we are further down the line and I'm amazed at home many strategies that we use you have already put in place. We used whiteboards - one in the kitchen with a list of things for the week (meal plan etc) and one by the front door which is more of a 'house' list to do. This is a way that I can remind my husband to look at it - rather than reminding him of the specific things to do (I get sick of hearing my own voice sometimes). We are very lucky that he returned to work after only 3 months off and although he now works part time and has a different role he has been well looked after including support from a vocational OT. I have to say one of the main lessons I have learnt is just because a 'medical professional' says they are going to send out a follow up appointment etc - things don't ever really happen unless I ring and ask or get my husband to ring and ask. This is very frustrating but it just seems to be the way it is.

My husbands main issue is 'short term memory' and I suppose my main issue is that he's not the same man I married. Its tough - but its not his fault. I took a long time to get in touch with Headway (I was put off by my first meeting) but I attend a carers support group now which is great and have been to some brain injury awareness training sessions - which I have got little hints and tips on. Its difficult as what I have to do from a 'caring' point of view isn't obvious - my husband goes to work and to anyone that didn't meet him before he just looks "normal" (if there ever is a normal) so its the hidden stuff - remembering to think for him and me that is hard. Financial issues have been a huge problem (ie parcels and parcels kept arriving and he has no 'check' on his spending) and this is the biggest problem I've had to come up with solutions for - which is hard when you want someone to remain to be as independent as possible.

So as far as neuro rehab things - My husband tries to keep a diary to remind him of things - we do memory books of holidays etc - we go through each week coming up the weekend before and a plan of how we are going to do it. He uses 'brain training' apps on his mobile phone, an alarm for his medication and has some gadget attached to his keys and phone so if they go a certain distance from each other an audible alarm sounds - this is so he doesn't forget his keys when he goes out as he would always generally remember his phone. I found it hard having to remember things for him and so I use a 'to do' list on my phone which helps me remember to remind him about things! Earlier on - we also both had an app on our phones so we could track each other. This was useful when my husband couldn't drive and so was relying on public transport. If he got on the wrong bus I could see where he was and tell him where to go. Now we just use it when he gets lost in the car (but his sense of direction was rubbish before his brain injury!!).

So my time is running out but I will say that what has happened is so tough on you too - people will ask after your husband but forget how hard things are for you too - but i definitely understand. Things do get easier - the period of 'adjustment' for me is still ongoing and thats after 2 years so stay strong but look after yourself too. You can be trained a million time to do CPR on a dummy but it never prepares you for doing it on a loved one - especially when you have been fast asleep.

Feel free to send me a direct message - the one thing I really really wanted was someone who had experienced the same thing to talk too and so far this hasn't quite happened but everyone I have asked this of - I've always said - well if you ever get someone else that this happens too then I'd be more than happy to talk to them.

Take care

CJDA94

[Hannah2329 in reply to CJDA94]

CJDA94 I can so totally relate to what you say!

The white boards, the weekly plan, we meal plan so he knows what to cook, the thinking for 2 and the spending! We have shared calendars so he knows where he's got to be or what time I'm due in from work etc! We're 8 years on and honestly we're still learning as life is constantly changing! We have only discovered headways this week (why no one told us about it 8 years ago I don't know!! Anyway!) and it's so refreshing not to feel like the only person living in the turmoil and aftermath that other people simply don't understand! xxx

[CJDA94 in reply to Hannah2329]

I'm so sorry that you weren't told about Headway 8 years ago - fingers crossed they can offer you some of the support and relief that I get from having people who 'get it' listening to me. You are right about people just not understanding - its hard to explain isn't it!

[timmarshall666]

You are never told how long or even if you are going to recover. 5 years this May for me and had lots of help from Headway and there life styles workers. Hope things are getting on a normality road.