Discharge from hospital is probably something that sticks in the memory for most people. 

Terry had been in hospital for four weeks when he was allowed home under the local Early Supported Discharge scheme. Panic and delight in equal measure! We’ve since met other stroke patients who’ve spent much longer in hospital. I could see why he was considered a suitable candidate for ESD – he  had no other medical issues, and he applied himself to physio with a will. He might have come home in only three weeks, but two things delayed it.

First: anonymously, a friend of mine tipped the hospital off that I was apprehensive about caring for him. I didn’t want to admit it, but I was. He had so little mobility and is so much bigger than me, I was terrified he’d fall and that I wouldn’t be able to get him up, and I just didn’t know how to handle him. I’m clumsy in the spatial world. I needed to be shown how to get him in and out of bed and make him comfortable; getting in and out of a car was a very important technique, too, and I was surprised there was no protocol around this – once we’d asked, a dry run made all the different to our confidence.  For a newbie carer, the question ‘do you think you can cope?’ is impossible to answer, and all I could think was, ‘if other people do, I suppose I can too.’ With hindsight, I am grateful to that anonymous friend who dobbed me in, although at the time I was annoyed because of course, I wanted him home. Another week saw a significant improvement in his condition all round and the staff were wise to put on the brakes.

The second reason was Terry’s sense of humour. He’d undergone a psychological assessment: a long list of ‘can you’ questions to which every answer was no, some of which were frankly inappropriate. Why would you ask someone who can’t get out of bed and has lost the use of one side whether he still enjoys his previous hobbies – gardening and playing the guitar? The final question had been what would be the first thing he was looking forward to doing when he got home. I’m guessing there was a touch of exasperation there when he said he’d be decorating the hall, stairs and landing. This rebounded, though, because it was reported that he was a risk-taker who didn’t understand his vulnerability and might be a danger to himself. 

The day I left hospital was rather sad. The rehab unit was a prefabricated, temporary, building, opened for a short time about 50 years earlier. A new hospital had been built about 30 miles away which would take over the rehab patients. The day I left, just about every member of staff was involved in a whole day meeting to discuss how they would be transferred or reallocated. This meant I was unable to thank them or say goodbye properly. 

An ambulance was arranged to take me home sometime after 10.00 and I was taken to wait in the lounge. It was rarely used. I had only discovered it existed the previous Saturday. My good friend, Chris, had come to visit me. It had been Cup Final day and Chris asked a nurse if there was somewhere we could go to watch the match. Suddenly the clinking and rattling sound from the bag he carried was explained. I know little about football but I was aware of a connection with bottles of beer, which he had cunningly smuggled past the nursing staff.

I had been waiting – on my own and minus beer – about 2 hours when a helper brought in a man in a wheel-chair. From their conversation I learned he was waiting for staff to admit him. He was in his 30’s and had a bad stroke eight months earlier. He was discharged after a couple of months. Sadly, he had a second stroke two months later and another this morning. I was very sorry for him but also quite anxious. I had been told that if I survived more than a month there was a reasonable chance of not having another. I’d just reached the end of week 4.

2.00pm I was still sitting surrounded by my new toys: a walking frame, a small wheelchair for use within the house, a larger, more rugged one for use outdoors, all presented with the assurance they would give me a degree of independence, eventually. I didn’t ask how. Not having any use through the right-hand side of my body and only propelling the chair with my left hand, this independence would extend to travelling in very small circles. I had a mobile commode, for use anywhere downstairs, wherever the sun shone brightest, and portable urine bottles. There was also a complicated spaghetti of tubing, ending in a rubber bag to be strapped to my ankle and a small funnel at the top which relied on luck and gravity to be ready for action if nature called. I did feel the smallness of the funnel was rather insulting. Overall, at that stage these items seemed to have far more potential for mobility than I did.

Home is where the house is – but not as we knew it.  

I eventually arrived home at around 4.30. Rain was pouring. The ambulance crew took me indoors, using my outdoor wheelchair, then brought in all my equipment. There was no manual explaining how life would work from now on. It was wonderful to be home with Gill, but the house seemed all wrong and full of challenges. 

I’d been warned that coming home was likely to be a downer for Terry, because being in a familiar environment would throw his disability into relief. He didn’t let this show. It was certainly a challenging time for me. Just working out  where to put all the kit, and how to make sense of the house with the spare bed downstairs and all the furniture re-arranged; learning new routines, not knowing when he’d wake or if he’d sleep, was all draining. (It was four days before Terry noticed the creaky old piano had gone to the knacker’s yard.) We had the weekend to adjust before I went to work on Monday, and then came the next curve ball. We had been allowed a visit from a carer three times a day, to help me stay at work, which seemed incredibly generous. It hadn’t occurred to us that the time window for each visit was enormous, so my chances of being out of the house at 7.30, or even 8 am, were slim and down to a throw of the dice. He woke early and in pain. How could I possibly ignore him? By the time the carer arrived, there might be nothing immediate left for them to do. Their remit was precise – they weren’t even allowed to hang the washing out. I was lucky. My job involved some teaching, but a lot of admin which could basically be done where and when I chose; my boss and colleagues were incredibly supportive and ready to be flexible. If we’d had fewer visits, but certainty about their timing, everything would have been so much easier. One long visit would have achieved more than two short ones.

Things to think about as you make the transition from hospital to home

• Expect to be confused. Home isn’t home any more.
• As a carer, think through all the things you’re going to have to do.
• Nursing staff are a dab hand at things you’ve never done. Ask professionals to demonstrate anything – getting into / out of bed; sitting up in bed; transit to wheelchair; getting into / out of a car; how to support the person in a way that is comfortable for them; any practical tips for visual impairment or visual processing (lighting, mirrors) etc. Ask about using cushions / pillows to support limbs safely and comfortably.
• Learn to lift and shift, using the correct techniques – there are good online resources.  
• Keep plans for the first day(s) simple and involve as few people as you can get away with.
• Visitors are tiring for the patient; a newbie carer has enough to manage without entertaining too many other people.
• Allow extra time for every task.