So how did all this make you feel? What was going on inside your head when this was going on?

What’s going on in my head by now or by then, is that I still had this meeting from somebody overseas to attend to. I had banking to do, I had rent to pay, I had all kinds of things I had to deal with. I mean, life goes on. Either you die, which I very much wanted to do, but I couldn’t figure a way to do it because I couldn’t get into a car and do the exhaust job on myself. So I thought, If I’m going to live, then I’m going to do the best I can with it But where was I going?

You were talking about how it was making you feel and you were thinking about, you know, things that you had to get done but…

Oh, how did I feel, yeah.

… you couldn’t, hmhm.

So, I had to deal with all this stuff. So I eventually got a hospital social worker to come… and I explained some of these things to him. I had to move my car for instance. It was (on the side of the road and) being vandalised. I had to have it moved. So all kinds of things like that, just practical issues. So I got to this guy and I explained to him the problems that I had and it seemed everything I brought up that I need money, I need to do banking, I need to pay my rent, I need to blah, blah, blah, he’d just say, Oh we can’t touch money. We can’t go in your house And I’m like, Well what can you do then And in the end, nothing. So I said, Well I need to be discharged by.. whenever it was, 7th of September or something. And time went by and nobody said anything and eventually it came to that date and they were aware of the situation, I said, I need to leave by the.. whatever date it was. But the date came and there was no discharge and no arrangements so I said, Look, I have to leave. I’ve got people coming, I’ve got, these things to deal with They said, Well you’ll have to discharge yourself And I discharged myself. And that was it. That was a really bad mistake. I mean nobody was (or) seemed upset… you know, bothered by it particularly. I just guessed that it was a formality, they just wanted to clear themselves that I had (to) discharge myself. But it seems that a lot of people were very upset by this and I was virtually excommunicated. You know, it was as if I was saying, I think your hospital is rubbish I wasn’t saying that I’m just saying, Look, there’s stuff I need to do. There is nobody else to do itSo I was discharged. I was wheeled from the ambulance into my house, the door shut and that was it.

Wow

[laughs]

So…

That was it. I phoned up and I phoned Age Concern and they helped and eventually I got somebody to come out, because I naively thought that in these days we have things like care in the community and support systems in place.

And I thought it was just a matter of plugging into all those. I found they just weren’t there. And a lot of it seemed to, be because I discharged myself. The hospital could access these things but I couldn’t access them.

When I was in Kenya in hospital, I wanted to discharge myself and the insurance company said, ‘If you do, we won’t fly you home, you’ve got to stay until the hospital says you’re well enough to be discharged or we just won’t pay for you to get home. So as soon as I was sort of within 10 miles of home, I thought, ‘I’m definitely going to discharge myself, even if I’ve got to crawl home, I was so close [laughter]. I think I would, yeah, I would do it again because I don’t like hospitals anyway and looking round what the hospital was like, the way I would have been with old people with overflowing urine bags on their legs and dribbling their food, it was just no way to be shown what a stroke was like and I’m sure I did myself, although it was so hard to get home and have to crawl about, it was so much better to be at home with my dog and my family and the familiar surroundings and at some point you have got to get home and start living in your own surroundings and getting used to it so I’m sure I was so much better from that point.

How about, did you discuss this at all with your GP?

It’s difficult because I suppose it, I felt a bit guilty because my GP I actually worked, worked for at the time and he had arranged for this, the admission and everything, so it looked a bit ungrateful to turn round and say, ‘By the way, I’m at home now, I discharged myself but, and when I told him about, you know, the geriatric ward he could quite plainly see why I did it [laughter] and I think he was, you know, as a GP, he was irritated to think that other people needed the bed far more than I did and they wouldn’t let me go as an outpatient and have the treatment I needed.

Did they help you sort of think about preparing to go home at all?

Oh yes. Before they let me home, I had, they came up one day with the, the physiotherapist and the social, well no, was it the social worker and the occupational therapist, they came up with me and were in the house for one morning and I had to make a cup of tea and I had to do little simple tasks to prove that I could do it before they would let me home and to climb the stair because the back bedroom is up the stairs. I’ve got a toilet and shower down but the back bedroom is up the stairs and, and so they put, they had hand rails put on either side of the stair for me. They did that and they put hand rails in the shower which is very helpful. I couldn’t manage to take a shower without them now but the stair now is no problem because I have this hand rail. I don’t find it a problem at all.

The things I was doing was going so well that the physio said to me, ‘How about getting home for a weekend and let us see how you get on?’ And I said, ‘That’s absolutely brilliant’ but of course they had to come out and see the house and we brought the bed down the stair to the dining room, put the bed in there, they were happy with it. I got a commode home with me, things like that, and I got home one weekend, one Friday night and it was absolutely fantastic. I got a night’s sleep, a good night’s sleep and it was a busy weekend, people would come to see you and things like that but I enjoyed it and of course on the Monday morning, I had to go back in again. But then the rehab started again and the gym started again, so it wasn’t, wasn’t too bad. And I think it was about 3 or 4 weeks after my stroke they told me I could go home, you know, and providing some things were done in the house for me, you know. I said, ‘Right. So they were very pleased with the things, my wife done things in the house and that and they came out and inspected it and it was OK. So I went out and I was more or less an outpatient in the, the Physio Department for 3 or 4 weeks and then the area rehab, they kicked in and they came to the house and they were fantastic too.

Well, coming home was, was difficult at first because all of the, all the doors to get into the house have got small steps, so the occupational therapist came at first to like assess the house to see if I could just be physically able to get in. So she gave my wife these ramps that we could use to get in through one of the doors and worked out which door would be the easiest to get in through. And I had to do like a safety test to get from my wheelchair into a car and just check my transfers. So once that was all sorted out, then it was safe for me to come home and I could get in. I was allowed to come home for a Sunday afternoon I think, I think we picked. My wife picked me up from hospital and brought me home. So I said I would come and have Sunday lunch and see the family, you know, just have some time out of hospital. So I did that and I think I did that 2 or 3 times before my discharge but the thing I used to do as well was when my wife would visit me in the evenings after she finished work, sometimes I would just say to her, ‘Please just take me out of the hospital, I don’t care where we go, just out’ and wed just go in the car and just go for a drive and go to the park and just have some fresh air or whatever. So I used to just go out for short periods, just for half an hour or an hour in the evenings.

And when I was in hospital, well, it was at the time of the European championships football, so I can remember one of the matches that was on, some friends had come up and said they were arranging to go out and watch the game in the pub and they said, ‘Do you want to come?’ and I said, ‘Well, yeah, OK’, so I asked the staff on the ward, the doctor and he said, ‘Yeah, that’s fine, if you want to go, go, just don’t come back too late and not too drunk’, so I said, ‘OK then’ so they came and got me in my chair and had to push me. It’s a fair old way from the hospital to the pub we went to, but we went there and watched the football.

One of the times as well when, the disability sort of really caught up on me and it was kind of when I appreciated how much, what effect it was going to have on my normal things in life because I wanted to go on the slot machine in the, when I was in the pub and I managed to put my good leg and with one hand, just pushed my chair a little bit towards the machine and got there, then couldn’t reach to put my money in, so I had to stop somebody walking past and say, ‘Can you just put my money in for me?’ And it was just one of those things where I thought, ‘I’m going to have so many problems, just small things’, things that perhaps you just take for granted that you can do that are going to become major events for me for the rest of my life. So that was a bit of a shock in a way.

[Laughter] when I came home, they did an assessment before I came home to see if I wanted, there needed to be any adaptations done to my house because obviously I’m in a house, I’ve got a house with stairs and I had to get up stairs. And I had an obsession about my house, not reflecting in any way the fact that I am now disabled. So I refused to, I didn’t want another banister put up on the left hand side of the staircase. In fact, I’ve just had a banister put up on the left hand side of the staircase last year [laughter] but back then I wasn’t going to have anything done. No, I wanted nothing. I wanted no trace of my disability, mirrored in my home.

Translated from Punjabi

You just want a toilet downstairs is that it?

I’d like a toilet and shower for bathing downstairs I don’t need anything else, I just need this and nothing else.

And for walking?

I can walk little, slowly slowly I can go to the toilet but if the toilet is far I can’t make it then, now. The toilet is upstairs how can I climb the stairs to go upstairs, if I want a bath how can I climb upstairs. I come here especially to have a bath.

They should have given me toilet bath, so I could shower. Now I’ve stayed home 6/7 months. They gave me bath towel, with bath towel you can’t get rid of the smell not until you use water properly. They used to wash my hair-using bucket, they can’t bath me in a bucket. I used to smell that’s why I started coming here.

Here they bath you?

Yes they bath me here.

The only thing I think perhaps that, the transition between hospital and home could have been a little bit softer. It was a bit like jumping off a cliff. I hit the ground at home with a bit of a thud. And that was very hard for us all. Perhaps we could have had more, a sort of one day supervised visits at home to get me used to the place and, but maybe that’s expecting too much. It was hard, I’m not saying I’ve got the perfect answer for it but the nurses in hospital are fantastic.

But that was part of the, the issue, that going from 24/7 care to having a wife and two children and having to look after myself to a large extent was a big jump.

A big leap.

So can you give some examples of maybe what would have made the transition easier? Can you think of specific things?

Well I’ve mentioned perhaps a few more, a few more day visits.

So what would that entail?

Maybe a physiotherapist or an occupational therapist coming here for a whole day and possibly even a whole night. And that’s the thing, I mean, at night I had to get up to use the loo and I was very unstable. I had a bottle by my bed to use, that sort of thing, when I first came out of hospital. Because it was very difficult for me to get out to the loo. Because I was pretty unstable on my feet. I could walk a bit but, you know, in the dark, there’s a whole lots of issues really getting up in the dark and moving about, you don’t want to put the lights on. I didn’t want to wake up my wife. My wife was very good, she’d have happily let me wake her up but I didn’t want to. I found using a bottle by the side of the bed, this sort of thing. I just suggested that perhaps occupational therapists or physios could have stayed overnight, that’s a bit ridiculous because I couldn’t expect that. But I guess the whole point is life at home involves days, nights, it involves times when the children are here, times when they’re not. It involves you know, there’s so much that being a dad and a husband in a house with two kids involves that was a shock for me to come home to. I haven’t got the perfect answer how to make that transition other to have perhaps, perhaps I could have had more whole weekends at home before I came here permanently. Perhaps my wife and I could have been counselled or had more discussions about how we were going to deal with these challenges and how we were going to face up to them. And a lot of the things I didn’t realise how difficult it was going to be till I actually got here. One of the things I think was the, you know, the children are very noisy as all young kids are, they run about, they play, they play fight, they argue, they laugh and giggle and, and throw cushions around and just all sorts of things. And the chaos, having had a brain injury coping with levels of chaos is quite difficult. And coping with a chaotic, you know, children leaving toys on the floor and the busy-ness, the manic-ness of this household from the hospital was a hugely mental and physically challenging thing for me.

How was it when you came home?

Not very nice. Not very happy for a while because I, everything had been so wonderful in that hospital, I had such good care and then I came home and you’re relying on the social work department to send you a helper and however it’s turned out that I’m very happy, excuse me, I’m very lucky because I’ve got a carer who comes in four times a week, a day sorry [laughs], four times a day. So I’m very lucky.

But now I’ve been back home for what, two or three two or three months, I can’t remember which, I’m OK, I’m settled in fine, you know. I wasn’t looking forward to come home because I wasn’t, I live on my own, you see. So, however, aye, I like the company but.

I do think that theres one really important thing and it was something that was, I was going to get involved in and then unfortunately I was not able to go on but there was a group of us that thought it would be a really good idea that when a stroke victim was going to be released from hospital, somebody who’d had a stroke and had been home for a time should go to the hospital and have a little talk with the person who was going to be released and explain what happens when you get home. That, I think, is a very important thing because, more than anything else in the world, you want to go home and when you get home, I have to say that, that is the last place you want to be.

Now again, my husband couldn’t understand that the day I came home I should have been absolutely overjoyed because I was home but I think it’s something to do with a feeling of insecurity. You’re very frightened that you’re going to have another stroke and that you haven’t got nurses around you. Whereas in hospital, you feel very safe. I mean, there were a couple of times when I did think I might be having another stroke and they were there immediately, the doctor came you felt very safe. But immediately you come home, you are on your own and it’s a very frightening experience and I think if you are told that you wouldn’t be excited to be home and it takes a long time to get yourself into the right sort of way of feeling, I think that would help lots of people. And, unfortunately, this little group we were going to set up, unfortunately as my husband died, I wasn’t able to, to get more involved in it, which I, it was a great shame because I think that is a very good idea. I think it would help lots of people.

So the weekend visit went very well and I spoke to the occupational therapist on the, on my return on the Monday and she cleared it for the Wednesday. And it’s been fine ever since. Obviously things the very early days, it used to take me an hour from getting up in the morning, getting showered, getting washed, getting showered, getting changed, coming downstairs. I had a battle, a real battle to take my pills out the foils because of my lack of control and the first 2 or 3 weeks, my wife used to leave them lying for me in the morning and that was, took about an hour to an hour and a quarter from getting up to getting down before I started making my breakfast. So that was, you know, it was quite taxing, both mental and physically because at that time I was, obviously you’ve been in hospital for about 2 months and you’re very, very weak, you know. And I used to come here and sleep, lie along here and sleep, you know, and I was very, it was very tiring, very tiring at that time. It really was.

But, like everything else, like, like the speech coming back, your throat’s getting stronger , my muscles got stronger, physically got stronger and things became easier and easier and easier and you’ve just got to keep doing it and doing it and doing it and doing it, you know. Sorry, I was going to say I was very, very dependent on, on my wife because I couldn’t make coffee, I couldn’t make tea, I couldn’t make soup, I couldn’t make you know, meals or anything. I couldn’t do anything about the house or, you know, once I was dressed, I could, manage, just manage to dress myself. It was the devil’s own job trying to put a pair of shoes on socks or slippers or anything like that, you know. It was really, really difficult and I was totally dependent.