Advice needed: Hi everyone I'm new on here. My... - Headway

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Advice needed

HHRovers
HHRovers

Hi everyone I'm new on here. My husband had a massive heart attack 11 weeks ago in his sleep and has been left with a hypoxic brain injury. Me and my 10 year old daughter and 12 year old daughter kept his heart going for 25 mins until the ambulance came. It was right at the time of Covid 19 which led to the ambulance delay and is not being able to see him apart from zoom calls for 9 weeks. We were told he wouldn't survive but after 2 weeks in a coma he started to respond. An odd word, looking and watching people etc He had a further 4 weeks on a high dependency ward then was sent to rehab where he has been since. He is now walking but needs supervision as he is unsteady, talking, although he is extremely mixed up and can go to the loo, again with supervision and it's hit and miss. He has started eating normal soft food just in the last 2 weeks or so. Great progress but it has been so hard. He remembers me but not really our two girls, where he lives etc. He does crazy stuff like trying to eat wet wipes if they're next to his food thinking that they too are food. He also gets very agitated and they've had to ring the police a few times to calm him down in the night. It's heartbreaking to see him when he's at his worst but he is still with us and it's still early days.

I'm trying to keep everything going, home school, work and hospital visits. I'm coping just about and my girls have coped well too. I want him to come home also but I'm scared too of how it will be. At the moment he needs watching constantly as he's classed as a danger to himself. I'm afraid of how our life will be when he does come home for my girls who have always had all of our attention and attend several sports activities etc. I also have no idea as to how long it will be until he does come home.

I don't really know what advice I'm asking for, just putting it out there.

Sam

19 Replies
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Hello. I am so sorry that everything has been so hard for you and your family.

I don't have any advice myself, but I can strongly recommend the Headway helpline. They can give you support and supply you with the information that you need. Their number is 0808 800 2244.

I wish you and your family all the best.

What a fraught situation for you all HH. Obviously the longer your husband remains in specialist care the better, considering his present volatility. It must be so hard for you seeing him distressed and confused, but the transition from coma to regaining awareness and insight is naturally a rocky road.

It a massive challenge for the brain to readjust and relearn basic activities, like a step back to infancy with the frustration & tantrums from trying and failing.

As Marnie mentions, the Headway helpline (freephone - office hours) would be a good place to start in getting accurate information and useful/friendly advice. Try them tomorrow and let us know how you get on. All best wishes, Cat x

I brought my husband home 31 march 2020, skipped rehabilitation due to covid, hes been home 15wks tomorrow, i have 2yr old, 14yr old no family/friends support. The first 12wks was rough with attacking members of public, obsconding, smashing house up, refusing meds. Confrontation was high first 10wks, but really bad first 6wks, think how you will react. Basically stay calm dont argue back.

Hospital started visits 10th week home. Make your house safe, hide keys, stock up on essentials, start up online shopping account, keep meds hidden

Its going to be hard, keep a structure and routine with meds, rests, food bed time. If you have the luxury of family support arrange sleepovers for kids for a break.

You need to stay strong infront of your husband, even at difficult times with my husband any signs of weakness caused trigger for behaviour.

Get yourself familiar with medication and write down as with stress you will become forgetful,

Keep noise minimal in house.

I wish you all the best.

Thanks for your advice. I can't believe you are having to go through this on your own but it sounds like you are doing an amazing job. Well done to you and I wish you all the best too. X

Just stay strong, our husbands are in there somewhere. Rely on no one, i dont mean in a horrible way but your find people start avoidance behaviours, you will get angry and at times feel like the hulk with emotions.

I emailed my local headway 4 weeks ago, not one contact back its very lonely and the day goes click of a finger, its hard but keep strong hold those tears back out of sight. Virtual hug. X

Hi HHRovers, I was thinking about him trying to eat the wet wipes and was wondering if he could have a urine infection. My partner suffered a few of those in hospital and how I could tell was, he would do strange things, not the norm. Maybe it's worth asking the hospital to check.

My partner had a tbi but also a cardiac arrest at the scene ( unsure how long for, but he was resuscitated). When he's tired, he says he doesn't remember me, or our time together, but if we look at photos or chat about specific things, they can help. X

HHRovers
HHRovers in reply to sue-66

Thanks, I mentioned this today to them and they are running blood and urine tests.

Hi HHrovers, you maybe entitled to a full time carer, to help you with this mammoth task, worth getting advice from the rehabilitation centre, hope it all works out for you, try and rest while you can, and be kind to yourself.

I really feel for you - this is soooo hard! There is light at the end of the tunnel though. My husband has a hypoxic brain injury due to a massive heart attack accompanied by 6 cardiac arrests 4.5 years ago. He displayed all the symptoms you described. SoI really do know what you are talking about. After 2 months in hospital he went into rehab for two months and has been home since. He is safe at home but he cannot read and write properly and ADIs are a challenge (compounded by a stroke during lockdown here in NZ but that’s another story...). But he is totally coherent, we go out to the movies and meals and on overseas holidays (well, we used to... until Covid). It is a challenge being responsible for everything and sorting out everything and it drives me nuts at times. But he is here with me and I can have discussions about the economy and politics with him... ok - he sometimes doesn’t know which way round his clothes go on, but I have learnt to cope with that.

I have been told all the time that every brain is different and there is no way of predicting how this will turn out but I just wanted to share this story to give you some hope that you can have a good life together. Stay strong and look after yourself!!!

HHRovers
HHRovers in reply to Gela64

Thankyou so much for sharing your story. I do have hope, it's just scary and the not knowing how far he will get is the worst part. I do know I am lucky he's still here though. X

Gela64
Gela64 in reply to HHRovers

Yes it is scary- not something any of us ever want to go through... I found the not knowing the worst- you just dont have any control and you know no one can give you a definitive answer. I hope you have a good support network - I used to think I was resilient but I definitely needed my friends to keep me sane. Your nam may well get quite a lot better with few disabilities- but it will take time... and the brain does have an amazing ability to make new connections and pathways... patience is the main attribute- never my strong point- but I am getting better at it. Wishing you all the very best x

Husband is 1 year out from a cardiac arrest in his sleep and was really disoriented 11 weeks out. Had trouble telling reality from dreams, talking nonsense and generally not with it. It was so scary, we had a young baby as well.

One thing I found that was so helpful was the rancho los amigos scale:

neuroskills.com/education-a...

Sounds like your husband is at a 4.

My husband went through pretty much every step on the scale and now he’s nearly at a 10 (sometimes needs help assessing his ability to complete certain tasks). He’s starting a phased return to his job now. This was unthinkable 9 months ago.

As everyone will tell you it’s a long long hard road to recovery and there are multiple setbacks on the way but recovery keeps going regardless.

Feel free to reach out if you have any questions or just want a chat.

HHRovers
HHRovers in reply to Sarbear123

Thanks for taking the time to reply, I'll take a look.

I suffered a cardiac arrest a little over 1.5 years ago. I was without a pulse for 26 minutes because i was in asystole due to extremely high potassium levels in my blood. I was in a coma for 3 days, but regained awareness a week after i was brought out of the coma.

i awoke to find myself completely restrained to the bed i was in. Apparently, i was very combative, so they put restraints on my wrists and ankles, and put me in a posey vest so i couldn't move.

i am back to work full time as an accountant.

i hope your husband has a very good if not complete recovery.

HHRovers
HHRovers in reply to absa

Thankyou so much for your reply, it gives me hope to read all the positive outcomes. I'm so pleased that you are well and able to work again. As long as my hubby can have some quality of life and independence eventually I will be over the moon, anything else is a bonus. Best wishes x

absa
absa in reply to HHRovers

you're very welcome. I lead a completely independent existence - doing all the things that i did before without issue. Honestly, not much has changed for me at all. I feel a little loopy most of the time, but it could always be worse. things are definitely moving in the right direction as far as recovery is concerned.. very slowly, but surely.

I have been using human growth hormone, viagra, and taurine daily, all self-prescribed... if you catch my drift.

Hi Sam

Eleven weeks is very early on the road to recovery.

My husband is two years down the line and life is different but we now have a life where we can go out together and I was delighted back in Feb for us to go out with two friends for my birthday. The evening went well and something in the early days I could never imagine.

Recovery can be a very long road but take heart and try to deal with things on a daily basis rather than worrying about weeks ahead.

Wishing you and your family well x

Hi HHRovers

Firstly I’m sorry to read about your husband it must be so scary for you , there is light at the end of the Tunnel. Stay strong , I’ve read everyone’s comments and wow how I can relate to them ,my son now 23 has hypoxic brain injury 3 years in now and it’s been a long tough road like others he had to be restrained at times in hospital he lashed out and had behaviour problems memory problems , he went to rehabilitation but it didn’t help him , i now felt it was too soon for him at that time , but there was no where for him to go as home was unsafe for him . After the rehab we then had him home we thought we could make him better , I joined my local headway Carers group and I’ve made some great friends , we have great support , they were always at the end of the phone for me and each other , so my son had loads of issues then , thought he was in a dream !!lashing out at us , !! running off , ending up on trains and us having to run after him (but at that time he now says he was so confused and didn’t know how he was feeling didn’t think we were his parents ) had loads of mental issues , we was on our knees struggling with him we felt like we were failing him he was our boy , unfortunately he had to be admitted to a psychiatric hospital , due to his behaviour towards us , at the time it was so awful for us but it was so scary for him too ,we had OT and Psychology come to the house weekly to see our son so after he got sectioned they suggested he go into further brain injury rehabilitation as the psychiatric hospital wasn’t the right place for him , but it was keeping him safe and us some rest bite , after months of waiting he finally got excepted into a rehabilitation , so before covid we visited every weekend as it’s a 5 hour drive for us , we would stay in a hotel and spend 2 days with him we took him out to cinema bowling meals walks , fun parks and generally spending quality time with him , but since covid we have just started visiting again but can’t go out with him only visit him in a lovely room they have set up ,so we take board games , x box and films to watch making the most of the time we can see him .

He went there on a section and had loads of problems he has been there for nearly 2 years , he is no longer sectioned and is on another unit and has a vocational programme he has made great progress he now accepts we are his parents he tells us he loves us now which he couldn’t say for 2 years he calls us daily he manages his phone and I pad to face time he texts through the day and says he misses us , his behaviour has been really good ( he did have behaviour issues and run off and number of times when first going there ) but over the time they have managed this and he agrees now the medication is helping him ,

My summary is , he has gone through a transformation and was very scared and frightened of how he was feeling and what he was going through and we have been so fortunate that he got a second chance at rehabilitation it’s taken a long time but now my son accepts he has a Brian injury and can talk about his feelings and emotions he is different we still see traits of our son and we have him alive , and the plan is for him to come home and go back to work which he is desperate to do , as he has a little job at the rehabilitation, 2 years ago that was a definite no way , but now we have hope and he has a future with a bit of support

I wish you all the luck 🙏 it is a long journey but have faith

And like many of us , we know how you are feeling, and have been feeling , and still going through it with our loved ones 💙❤️XX

HHRovers
HHRovers in reply to Dian7

Thanks for taking the time to reply. I'm so pleased that your son is getting the help he needs and is on his way to going home. It's a real rollercoaster of emotions and it's nice to hear positive outcomes. All the best for the future ❤️

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