Hypoxic Brain Injury

[Ronni152]

My husband had a cardiac arrest at work on 3.2.17 and was given CPR until the ambulance arrived and shocked him twice to restart his heart. He arrested again in the hospital. He was in ICU in an induced coma for 10 days and is having an ICD fitted tomorrow. After that they are planning to discharge him on Friday despite me repeatedly pointing out behavioural issues and cognitive impairment. I have been trying without success to have him assessed. Any advice would be most welcome

[randomphantoms]

hi Ronnie and welcome.

Please ring Headway tomorrow office hours 0808 800 2244.

Love n hugs

Xoxo

[Hidden]

Hi Ronni152

My name is Angie I sort of know what you are going through, my dad also went into cardiac arrest and had to be shocked. His story was different in the way he struggled with a heart condition. I can totally understand your frustration in that no one is listening to your concerns. My partner has a significant brain injury and wasn't getting help. I spoke to someone at Headway and they sent me an email with attachments advising me what to say to his gp, I was to state that he needs an assessment. His gp referred him and he had an assessment with the brain rehab team and now he's waiting to go to a brain injury unit. Sorry for waffling but I would start with advice from a Headway advisor. I hope you get something sorted out.

Angie

[Ronni152 in reply to Hidden]

thank you Angie - I will call Headway - just waiting a call back from the hospital at present

[Hidden in reply to Ronni152]

Your welcome Ronni I really hope you get something sorted out for him. I would say one thing to you when you speak to gp, consultants etc don't take no for an answer.

Angie

[Silmarillion]

He sounds like he would benefit from a bit of rehab. I would ask to speak to his consultant and voice your concerns. At the very least he should have some kind of community based package set up for discharge.

[Ronni152 in reply to Silmarillion]

I called to arrange an appointment to see his consultant (as instructed by the ward) his secretary called me back to say he was too busy with clinics today and tomorrow and to speak to the ward staff!

[Silmarillion in reply to Ronni152]

That's just not good enough! I'd call back and ask for an appointment. You could also speak to your gp re a community care package

[Tammy15]

Happened to my husband. Get in touch with a hospital that specializes in brain injuries. My husband was evaluated from Craig hospital in Colorado. He was sent there for rehabilatiom. You may need to be his voice.

[Ronni152 in reply to Tammy15]

thank you Tammy

[Hidden]

I am afraid this is normal. Most people seem to get little or no help after release. As others have said, ring Headway for advice. You also need to get tough, don't just agree with what the doctors tell you, tell them what you need. I found one of the most useful people I had contact with was the Community Psychiatric Nurse. If your hubby is released, phone her (your surgery can give you the number) and ask her to visit, she can then tell you what's available.

[Ronni152 in reply to Hidden]

Thanks - my struggle for now is to even get to speak to his doctor!!

[moo196]

Morning,

As others have suggested, try headway. But also get an appointment with local gp organised immediately. Ask for referral to community neuro rehab team asap. The symptoms are all too familiar to many of us here. Be prepared with as much info and have some coping strategies in advance if possible.

Good luck

K

[Ronni152 in reply to moo196]

thanks - still awaiting a call back from the hospital so keeping the phone clear at the moment and trying to stay calm! I have to go for Physiotherapy shortly as I am recovering from surgery myself - I am 67 years old, 5'2", with a duff shoulder and they are planning sending home a 6'2" - 20 stone man for me to cope with - I love him to bits but have no idea how they expect me to do this

[moo196 in reply to Ronni152]

Make the calls to get yourself support anyway......they will call back again if they miss you. That way you are being proactive and helping yourself before the weekend.

☺

[cat3]

What a stressful & ridiculous situation you're facing Ronni. Please speak to Headway as soon as possible to get some help in organising a care plan for your husband.

Please phone Headway (don't waste time waiting 'til the hospital has phoned ; they're notoriously unreliable and you could be waiting 'til tonight )............they'll call you again if you miss the call.

Headway's helpline closes at 5pm so please contact them ASAP on 0808 800 2244.

It might be appropriate for your husband to be admitted to an interim care unit if there are any in your area.

So sorry you've been left to cope with such an almighty mess Ronni ; are there no family members who could help out ? xx

[Ronni152 in reply to cat3]

I have spoken to the staff today and they have agreed to get some assessments done tomorrow. They have not even tried to see if he can manage stairs yet!! I will be calling Headway first thing tomorrow as they were closed by the time I got back from my own physio, fighting with the hospital and then visiting with my husband. I still haven't even seen him standing far less walking so I will refuse to bring him home unless I see a written report from a named individual stating he can walk, climb stairs, feed himself etc. A Friday afternoon is no time to discharge someone who may require a care package put in place and changes made to the house. I can get help to set up a downstairs room as a temporary bedroom if he can't manage the stairs but it will take time as my family all live several hours away. They can come up over the weekend to help make preparations if necessary.

[cat3 in reply to Ronni152]

It all seems outrageous doesn't it Ronni. Many of us here feel we were discharged too early, and without adequate aftercare, but compared to what's happening to your man right now my care was tantamount to pampering.

I think you're absolutely right in refusing to take your husband home until he has better mobility ; it would be neglectful of the doctors to allow him home without any kind of care plan, especially considering his physical stature and your own health issues.

I remember when my 90 year old mother-in-law dislocated her shoulder 3 years ago, she was discharged from hospital after only a few days but transferred to an NHS 'half-way-house' unit for continuation of care and rehab, where she stayed for 3 weeks before returning home. This is the obvious answer to the overcrowding problem in hospitals as it frees up beds and medical staff whilst still keeping patients safe.

Let's hope the consultant can spare the time to recognise that your husband needs more nursing care and rehab, and that it's followed up with a proper care plan with regular & frequent visits from carers.

But please phone Headway at 9am and see what help they can offer ; you need to surround yourself with all possible/available support.

Try to get a decent sleep m'dear .......................and make sure you eat properly, even though you mightn't feel like eating !

Please update us when you can Ronni. Love Cat xx

[moo196]

Sorry it's so difficult. But I think you must make the phone calls (headway and gp) your priority tomorrow morning.

Fridays are a normal day for discharge from hospital, so better try to be prepared.I'm not sure one can refuse to be discharged ...?

[Ronni152]

I will do.

I got a call from my husband about 6pm to tell me that several doctors had visited him just after I left. (When I had first arrived I had to wait him coming back from having his newly fitted defib checked - he looked terrible - grey and said he felt really dizzy - they had to help him back to bed). He told me they had told him there had been a mistake and they had given him the wrong dose of some blood pressure med - hence he had been feeling so bad.

Because he has told me things over the last couple of weeks which proved not to be correct I immediately phoned the ward to enquire - they were very offhand and said that it was OK they were keeping an eye on him and would adjust the doses of his meds to compensate. I protested and asked why, after spending over an hour with the staff this afternoon questioning why I was not being kept informed, no one had seen fit to let me know of this "accidental overdose". The staff nurse said I would have to call back in the morning and speak to the doctors!! She then went through and told my husband I had called and she was worried about me!! Needless to say he immediately called me worrying what was wrong.

If I wrote a book about the last 3 weeks no one would believe me! I WILL phone Headway first thing - enough is enough.

Thanks for your support

Veronica

[Devaiur59]

Hi, my dad had cardiac arrest and has suffered a lot of cognitive impairment and is completely confused the majority of the time. He also has had an icd fitted, and was in induced come for about ten days too.

After he woke up, after few days he was weaned off artificial breathing, and then few days later, after being fed through his veins, he had to wait until his muscleds were strong enough in his knock to swallow which was about another four days.

He then had the task of trying to stand but was nearly passing out after being flat on his back for so long, and he just made little improvements over the next days until we finally got him home.

We had the choice in hospital for him to go straight to rehabilitation, but we ended up taking him straight home as my mum and dad have five grown up children whom were all willing to muck in, and social services agreed to come straight out and assess the needs of my dad.

Social services did come out and fitted bath, and toilet rails, and an extra banister rail which was definitely needed at first. He doesn't need them now, 7 months on, but he definitely does not walk the same as he did before the cardiac arrest. He actually wobbles and sways a bit now so his balance has definitely been affected.

Think you will definitely need help, as there was a lot of us helping, and even we couldn't cope sometimes as unaware to my dad, he can not cross the road on his own anymore as I learned when he nearly stepped out in front of a car because he can't judge the speed.

Also, after a few weeks after being home, we realised that he was completely unaware of having a brain injury( which I am glad off) but the chemicals in his brain started to change, and he started suffering extreme depression.

My dad did go to rehab a few weeks ago in brain rehabilitation unit, but has since left as he doesn't really need physical rehabilitation now( but he would of definitely benefited from it straight away if my mum did not have help from us) but unfortunately, he hasn't got the capacity to retain information for the brain side of the rehabilitation to work either.

I have noticed, even over the last two months, that just in time, that his brain is healing but by bit on it's own. His writing for instance is less muddled, and he manages to remember things he didn't months ago.

One of the things I am so grateful for, is my dad even tho he definitely is not the same person anymore, we still get the few occasions throughout the day we're he is quite lucid and we manage to have fun and his old fun personality shines through.

I definitely think you will need help at first, and if he is as bad as my dad then maybe a lot longer as you will need a break from looking after him 24/7. Ring your local social services, and demand help, we had to wait a couple of weeks I think, but the help was appreciated.

I really hope your husband recovers quickly, and I hope you get the help you will need and deserve. The whole situation literally does turn your life upside down and I'm hope you will also have someone there for you. Take care, and please let us all know how things go xx

[Ronni152]

thank you - all the comments on here have made me feel less alone so thank you all for listening to me when I rant! My late father was a doctor and a kinder, gentler man you could not meet - he would be devastated at the lack of communication with the family from the medical professionals.

[MaryLou13]

Hi, same situation here. It seems very early for him to be discharged. Do you have a local Abi team? We are in Cumbria and ours have been great x message if you want to know more x

[SimonLincoln]

Hi Ronni,

I had a similar experience with my Father. A early discharge resulted in the him being blue lighted into A&E 9 days later. The situation seriously deteriorated and he never recovered. Even after 3 years and millions or pounds spent on trying to stabilise the situation.

A couple of things to try:

A ward is fined for a "bounce back discharge", when a patient is readmitted with in 7 days ( I think). Talk to the ward manager and say you fear a "bounce back discharge". Its their budget that it comes out of, say you are concerned that it is "not safe", and the correct assessments to establish if it is safe have not taken place.

You can insist in an assessment to be carried out, the first assessment is a nurses C.H.C- which should document all the needs of the patient, this assessment is used to engage the social services. If you want the behaviour tracked insist on a "ABC" behaviour log being undertaken, - by nurses. Without proof of issues, the issues in effect "do not not exists".

As a general rule, always keep a note of first names, surnames and job title of every one you talk to.

Log with time and date all communication attempts. After 3 failed attempts contact PALS. In my experience the only thing they are good at is getting professionals to engage with patients family, but you need to give them examples of how there is a "failure in communication".

Refuse to accept your husband back to the family home unless your concerns are covered by the consultant as you feel that this is an "unsafe discharge".

Once your husband leaves hospital it i harder to access assessments, and you loose the leverage over the care system.

I found in the main, Discharge coordinators are really administrators (very limited clinical knowledge)/ pushy salespeople who often convey a wishful thinking as fact. They have huge stresses to free up bed blocking. They are very proactive, so give them tasks of "what you need to to be confident this is safe", or they will take charge and push you into something that is in their best interest only.

Other thing to watch out for:

In Nottingham, community rehab teams quote 3hrs of physio/ 3 hrs or Speach and language and 3 hr of OT each week. This is miss reported as it is a total of 3 hrs per patient for a max of 13 weeks.

The community teams will try and "empower the carer". Basically they assign rehab activities to the main carer to be undertaken. Although being empowered is a good thing, watch out the treatment task is not delegated to you.

I found the NHS is a organisation of people wanting to do their best, but over stretched and patients become numbers. Their focus appears to be getting patients out their departments door, and forget the what "is in the best interest of the patient".

On a positive note, I hear behaviour improves when a patient is placed in a familiar environment (Home) , although I never got to experience this first hand.

If you want to ask me anything please do.

Simon.

[Ronni152 in reply to SimonLincoln]

Thanks Simon - my husband was discharged at the end of February - we have ongoing issues and he was readmitted about 5 weeks ago with Transient Global Amnesia. It was only at that point that we have now been told he is being referred to the Acquired Brain Injury Team although we are still awaiting an appointment! At last they have accepted what I have been saying all along.

Sorry things didn't work out with your dad.

Ronni