I was sitting with Karen on the stroke ward when I got a call from ‘Patient discharge’… which sounds like it needs to be treated… to say that she was medically fit to be discharged from an acute ward and would be sent to a stroke rehabilitation unit.
Good news, and she has done well, with only really her right arm still being awkward and her speech sometimes being confusing, but I was still a bit surprised given she’s not been standing at all, or been able to wash herself, feed herself etc. I’m not being upset about this development, but there’s lots of things that I thought were going to happen that now won’t, at least not on the ward she’s on.
The bad news is that they’re sending her back across the border to her home county, and the rehabilitation unit is awkward to get to for somebody who doesn’t drive and where public transport links are once in a blue moon.
I think what a lot of people don’t realise, myself included sometimes, is that this is a very dangerous life threatening time.
As soon as one achieves some stability, when survival and stability is achieved then the job is done and the acute care is less necessary.
Recovering wholeness is a new ball game with variable results. To have survived is a huge success.
A stroke is the beginning of a very long road filled with yet more uncertainty. There are no guarantees.
Someone like myself, four years after the event can tell you there will be change, there will be highs and lows. Dealing with it is best done one step at a time.
We all have this experience and there is, as far as I know, no royal road to total recovery. Over time one comes to terms with things and begins to realise that it is still possible, no matter what the losses, to have a satisfying life. One can still make gains and improvements.
Ihad several months in a rehab unit after the stroke ward, and it really was a good thing to happen. Such a pity this one is so hard to get to. I really feel for you.
So glad to hear of Karen’s progress she has done amazingly well, you both have. I understand the problem her move to rehab will cause you, but it will hopefully be worth it if karen can progress further. Is there a rehab centre nearer to you do you know? Maybe if her progress is good she could be moved to a centre closer to you. Explain you need to be with Karen and the difficulties you face if she is too far from you but also take into consideration what is best for karen at this point in time. Don’t give up, you will both face many obstacles on the journey of recovery, this maybe the first such one. Just go with it for now, keep trying for a closer rehab centre, but remember this one could work wonders for her. It’s getting the balance right and what Karen needs now. I hope the move will be good for Karen and I hope you manage to see her if only occasionally, but things will improve and this obstacle will soon fade into the background when you have something else to deal with. I wish you both well
That really is good news. The hospital will usually just keep someone until they are medically stable & the longer term rehab is generally done elsewhere. This should be a good thing as they are set up to help with rehab whereas a hospital isn’t.
Maybe you can try asking if there is somewhere a but easier to get to for you but sometimes people have to go where there is space & the facilities are suitable. That doesn’t mean that it might not change in future & a move to somewhere easier to get too might be possible.
I didn’t do any proper rehab while in the ward, they got me walking down the corridor and two flights of steps once, but that was it. I showered once. It was mostly a time to be monitored and to sleep. Good that she is making progress but difficult for you with transport.
That’s a shame. I was sent to a small cottage hospital near to home rather than the rehab centre which was about a 2 and a 1/2 hrs drive from home, but I guess there isn’t many of them either now. I am sorry you won’t be able to be with Karen as much as you’d like, it will be a trying time, but hope that she continues with her recovery and you can soon be together again.
I had 5 months on a stroke ward with very little physio and then was suddenly discharged in what appeared an unseemly rush. My CONSULTANT came in one day and said “you’ll be much more comfortable at home and we’ve put a good care package together for you.” I was very uneasy about this and said I would prefer to try it out and if it was not doable for me and my wife, to return to the hospital NO, THAT CANNOT HAPPEN. Once you are discharged, you cannot come back except in emergency as a new patient.
My Care Package included a few fairly minor adjustments to our home, including access ramps etc, visiting Carers 4 time per day (I still could not use my left limbs) so could not get out of bed unaided or transfer wheelchair to chair or bed and I would have to pay for Carers myself, but subject to a cap on cost. WITHIN WEEKS OF MY GOING HOME, MY LOCAL COUNCIL THEN REMOVED THE CAP, meaning my Carers were costing me over £2000 per month and I was on the road to bankruptcy !!! I had worked hard all my life and saved for a rainy day, which arrived far too soon.
I was told in hospital that I had to get my head around the fact that I’d never walk again. As an ex-paratrooper ,I could not face that situation so had to spend another £1000 per month on private physios - but at least they got me on my feet and walking a little (with sticks).IAN DUNCAN SMITH GOT IT RIGHT- THE CARE SYSTEM IN THIS COUNTRY IS COMPLETELY BROKEN. and I had to have (and pay for) not one but TWO Carers. Why? ELF AND BLOODY SAFETY again raises its ugly head ! What happens when the Carers have just left and I need the toilet? My wonderful wife has to cope on her own- no Elf 'n Safety protection for her, poor lass !!
It’s a muggers’ buddle, right enough. Just when we could do with some professional care, it disappears. A rancid old toad with an Admin schedule was all set to send me home before any of the aids had been delivered, saying I could live upstairs until then. Luckily I have earned my spurs in a Health and Safety environment, so I was able to knock her back by quoting Fire Hazard regulations, but one shouldn’t have to do this. May her deeds return to her tenfold…
@2Weevils - you and Karen have reached a critical milestone.
Once the hospital considers patients medically fit, their sole focus is on getting the patient discharged from their care. Where the patient goes might not be their (the hospitals) highest priority and they will often put pressure on you to accept the discharge which will start as soon as they think you are medically fit.
Sometimes, these discharges are premature or false and the patient ends up being re-admitted, but the hospital would rather this happen than entertain the idea of the patient occupying a bed when they are deemed to be medically fit.
This puts the patient in a situation when they will have to make a choice. They can accept the decision and and be discharged or they can try to get further reassurance that the discharge is a “safe” discharge. The reason why you might want to do this is if you feel you need to be certain that you will be able to cope once discharged and you will have the care and support you need. This is not as easy as it might sound since in a lot of cases we just don’t know what care and support including equipment we will need. So being forewarned is being forearmed. You as carer and Karen as patient (is she is able to) should consider what life looks like when you leave the hospital and if you will be able to cope.
Be prepared to ask lots of questions and get assurances of the sort of help you can expect and do not accept the discharge if you don’t feel comfortable. I might be wrong, but I am pretty sure they cannot discharge you without your consent. Again, not being discharged may not be in your best interest either - you don’t want to be in hospital longer than you need to be.
From our experiences, the rehab phase is the most important and you must make the most of it. If you get any rehab, you should consider yourselves fortunate - not everyone gets rehab even though it is in our view the absolute “must have” post-stroke. Rehab prepares you or helps prepare you for life after stroke and it can take “as long as it takes” but you will not be offered an unlimited amount of rehab. There will be timelines and they will be looking to get you discharged from rehab as soon as possible as well, so you must make the most of it when you have it.
After formal rehab, you can carry on but it will likely be unsupported or minimal support. At this stage how you progress and how you recover is down to you.
