What rights & options do we have?

[Jackyk]

Sorry this is so long.

My partner suffered a cardiac arrest on the 19 September and has come through that OK after having a stent.

He came out of intensive care a week later and is suffering from memory problems, which are getting better daily.

He has so far been on 3 different wards at the hospital in the last week and we have been informed that they are waiting for a bed on the rehabilitation unit but cannot tell me when he is likely to get one.

He is very frustrated and bored as he is just lying around with no physio/occupational therapy and today he went off his ward and was found at the other end of the hospital after getting bored and wanting a walk (apparently he was gone for about 45 minutes)!

Today I have asked to see his consultant, but was informed that he 'may be around tomorrow'.

I don't feel that my partner is getting the appropriate help and wanted to know whether I would be in my rights to take him home where I think he will do a lot better.

Any help/advice would be appreciated.

[steve55]

jackyk you could take him home but the hospital wouldnt be responsible for whatever happened to him, then theres the care he might need, is he continent, or are you going to be up through the night changing pads and bedding or will you have him catheterized.

will he be living in a safe environment, yes he wandered off in the hospital, but thats far safer than wandering off at home.

think about it, i understand where youre coming from, my experience comes from working in care homes before my stroke.

good luck

steve

[Jackyk in reply to steve55]

Thanks for your reply.

He is using the toilet and eating independently and is taking one blood thinning tablet and one injection daily for blood clots. No other medication needed.

He knows who all his family is its just that he is forgetful about the last two/years or what he had for breakfast/dinner.

My concern is that he is not getting any other help or support and his frustration is growing daily.

[steve55 in reply to Jackyk]

jackyk i clodobigril ( something like that as a blood thinner ) the problem is , and this is where you are going to have to start being an absolute pain in the ass to hospital staff, your gp, i got kicked out of hospital after 5 days because i was independent.....................my problems crept up on me slowly.

i stay away from people i dont know, because in the middle of a conversation ill forget what im saying or i need a word i cant think of, the people i hang around with all have abi or tbis and understand.

it will be hard for you as it is for my wife, because you will never understand, because you arent going through the problems we are. forgetting things or saying stupid things like i did last night and on a text today ................we wouldnt want you to understand because if you did it would mean you had brain injury like us.........and we wouldnt wish that on anyone.

steve

[randomphantoms]

Hi Jackyk

I wouldn't be in a hurry to get your hubby out of hospital. In the current climate I'm fairly sure the hospital would be looking for ways to release him if he didn't need the place.

Memory problems are very common at this stage.

Can you take things in for him to do. Talk with him and please don't finish his sentences unless he asks for help. simple jigsaws or word puzzles or something to keep his brain active.

You could also keep a diary and it will come in useful later to help you both realise how much progress has been made.

Love n hugs

Xoxo

[Kirk5w7]

What you have to bear in mind is that very often the care you would need at home, physiotherapy etc, can be very patchy around the country. You are more likely to access this quicker while he is in hospital.

I had to wait nearly 3 weeks for a bed in a rehab unit and I couldn't walk or move around independently. I was told the average stay in a rehab unit was 12 weeks, and they are usually fairly small units only 18 in the one I was in. So the wait for a bed can be a while.

The important thing is to keep him stimulated, I had lots of visitors to distract me. Once in rehab it was much easier to help my own rehab with writing and jigsaws and other such things.

You talk of rights, I don't know what you mean by this, a lot of your partners rehabilitation will be down to himself. If you ring Headway I am sure they can help point you in the right direction.

Janet

[Sem2011]

As others have advised, and I would think twice before taking your husband home. Whilst he is in hospital, he will have priority to move to rehab unit as the ward will want to discharge him to rehab unit ASAP. If he is at home his rehab admission may be seen as not such as a priority as they may view he is well enough to be at home, and physio, OT etc can be the responsibility of the discharge plan from hospital/adult social care. The community rehab, physio, OT, neuropsychologist, speech therapy services are very limited in my area, services are stretched.

Again, as others mentioned, he needs stimulation and puzzles, wording finding, playing cards, crosswords.

I would perhaps Headway and they can talk you through in much more detail than any of us on the forum, of the future and options,, before you speak to the consultant. Unless he is on a specialised neuro unit, consultant, and I mean neurologists, understand how to read MRI and CT scans reports, operate on brain injuries, aneurysms, but the actual rehab of improving cognitive skills, memory and fatigue issues, is specialised for neuropsychologist, who I would highly recommend your husband is referred to one for a cognitive assessment, as this will identify the deficits of The brain injury, and how to improve, and employ strategies to help him and you cope with issues which will occur. My neuropsychologist saved my sanity, my relationship with my partner and without her I would not be the person I am today.

Hope this helps and does not sound too bossy🙂.

[moo196]

I'd agree with others and keep him in hospital and occupied as much as possible.Wish someone had told me about colouring books and brought those in along with audio books ( I wasn't well enough to do much else).

When he is discharged from hospital ( actually arrange this beforehand if possible) get in touch with community neuro rehab team - who should be able to visit at home and Headway of course. These things were not arranged for me until a couple of weeks after I was sent home -

Good luck

K

[Jackyk]

Thank you all for your replies.

I will speak to them today to see what I can do to help make his stay better.

He does understand that he needs to be there but I'm just worried in case he wanders again and gets out of the hospital. Hopefully there will be some more improvement in him today 😀

[Switch1975__]

try to talk to his cardio nurse if he has been assigned on about your concerns and ask her if it would be a good idea for you to take him home or not . But ensure you have the support around your self before to take him home as he will have to take it easy at home to start off with then build up his daily activity . I know this from having similar experience as my partner had a major heart attack four year ago . and like your husband he had a stent in . He is more active now than before his heart attack.

[CJDA94]

Hello, I'm only able to write a short reply as I'm on a quick lunch break at work but I echo the replies already given. Even though you may think he doesn't need to be in hospital - taking him home I'm sure will impact on the wait for a bed at the neuro rehab facility. My husband was waiting for about 4 weeks and during that time the days were very long but we did what other people had suggested - arranged people to visit, played games, watched films, went for walks etc. He was self caring physically but for a period of time he was 'specialed' so that he wouldn't wander off on his own etc (it must have been difficult for the nurse assigned to do this as well as for my husband because the days were so long) but it meant he was safe which was what was required. The OT in the hospital was really good at setting him tasks - ie gave him 5 things to do in the hospital (find departments and write down opening times, go in the shop and see how much a shopping list would cost etc), take him in the OT kitchen and get him to make a cooked breakfast etc (which he was then allowed to eat) - in fact in some respects her tasks meant that his stay in the neuro rehab facility was very short (2 weeks) and although his rehab potential had mostly been met by the time he got there - the contact with the neuro psychologist has been essential in organising his return to work and giving us information on driving assessments etc. I know its no consolation but it really is early days but to see the progress over 2 years is incredible but the life adjustment for me is still a work in progress. The one thing I wanted was to be able to talk to someone in the same boat as me so I'm so glad I found this site - I just wished I'd found it sooner. Please keep asking about things as that is what this site is here for

[moo196]

Just another quick thought....Could he wear some easily visible id in case he wandered off ? I just have my medical wristband these days but used to carry a card with many more details on......