PART THREE

Fazakerley Rehabilitation Unit

A New Domicile

       

Wednesday the 26th April 2000 the time is 10:45am; Richard and Dawn have said their farewells to the staff on Ward A at Ormskirk General Hospital, and are on their way to the Younger Rehabilitation Unit at Fazakerley Hospital in Liverpool. The morning has been a difficult one for Richard; the pain of parting from the nurses and staff that he had come to trust, and from the surroundings that he had come to feel safe in has been too much for him. He has been sick, and most unusually for Richard he has wept. He is sick a further three times on his journey to Liverpool.

I get through my work as quickly as I can and by 2pm I am at the rehab unit with Dawn and Richard. Fazakerley Hospital is a large and sprawling complex, it incorporates the Walton Centre for Neurology and Neurosurgery of which the Younger Rehabilitation Unit is a part, however the rehab unit is situated some little distance away behind the hospital's hotel and restaurant facilities, and finding somewhere to park the car is no mean feat. One of the things that Ormskirk managed to achieve on Richard's behalf was to rid him of his MRSA infection and so here at Fazakerley it has not been necessary to put him in a room of his own. And whilst a room of his own has obvious benefits, I think on balance it's a good thing that Richard is now on a ward with other people. It's a small ward only four beds and the ward is closest to what could loosely be called the nurses' station. Only three of the beds are currently occupied, and to my surprise and disappointment the other two occupants are both middle-aged men. I later find out that the term younger in Younger Rehabilitation Unit is very elastic and admits patients up to the age of 50. If I had taken the trouble to read the various notices that are on the notice board I would have known this, and would not have lain such emphasis on the patients here being young people, I had in effect promised Richard that the people here were of his own age group, quite clearly this is not the case. Another one of the notices that I have failed to read indicates that the hospital's management reserves the right to review a patient's progress six weeks after that patient comes on to the ward, and if that progress is deemed to be unsatisfactory then the management reserves the right to return the patient back to the referring hospital.

During the course of the afternoon the unit’s physiotherapist, occupational therapist and speech and language therapist introduce themselves to us and attempt a little conversation with Richard. He is not at all forthcoming and does not speak to any of them, indeed he barely acknowledges them, it seems that he just wants to lie in his bed and shut off from the world. His bed is very special, it has a touch button control pad at the top from which the head and shoulder section of the bed can be adjusted anywhere from flat up to almost 90 degrees, and the lower end of the mattress can be raised to bring the knees up. The height of the bed can also be adjusted from this control pad, and I attempt to show Richard how to use it, but realise that he will not be able to use it unassisted as it requires two hands, one to steady the control pad and the other to push the buttons. The mattress is pneumatic, the pump being situated at the foot end of the bed, it's clear that Richard finds it very comfortable and with an arrangement like this he should not suffer from bedsores.

Alice, the speech and language therapist listens to our description of Richard's means of communication using blinks, one for yes two for no and frowns a little, she says that she wants to concentrate on getting Richard to speak reliably, she wants to improve on his facial muscle control. I'm pleased by this, I have always found interpreting the blinks difficult, sometimes I'm not even sure that there's been any blink at all when others have said that's a yes, so I'm all for dispensing with Richard using blinks and look forward to him communicating by voice. In a perversity, which I guess I have to admit is typical of Richard, Alice is seldom to hear Richard speak during his entire five-month stay here.

Astrid is Dutch and her discipline is occupational therapy, she liaises quite closely with the units physiotherapist, Astrid tells us that she would like Richard to wear a splint on his right hand to hold it in better alignment with his arm. At the moment his right arm is permanently clenched and his right hand is cocked downwards and outwards at the wrist giving it a strained and unnatural look. These people are wasting no time in assessing Richard's needs and in outlining an itinerary for meeting those needs, and I am encouraged by what I hear.

On the corridor wall just outside Richard's sideward there is a large white-board, on it running from top to bottom are the names of all the patients, and left-to-right are the days of the week broken into therapy periods. Each therapy is denoted by a particular colour, green for occupational therapy, blue for physiotherapy, and red for speech and language. Black is used to denote a period of psychotherapy, and such sessions are comparatively rare, I look eagerly down the list of names and sure enough there is Richard's, and set out for the rest of the week are the times and dates of his planned activities. And for some reason I find reassurance in his inclusion, he is as it were a full member of this rehabilitation hospital community.

Richard's doctor at the unit is a Dr Cheung but she is away on maternity leave and her temporary replacement introduces herself to us, she is Dr Mallard. We ask after Dr Marlowe, he is the doctor who had come to see Richard at Ormskirk Hospital and whom had given the okay for Richard to transfer here. Dr Mallard tells us that he is on secondment at Arrow Park Hospital and will be away for some months. The ward manager George Blair (we met him too at Ormskirk Hospital) reintroduces himself to us, he is every ounce the manager, and very much in charge, he is the kind of man with whom you would have little inclination to argue, and yet at the same time have no hesitation in approaching for advice.

A middle-aged man named Peter occupies the bed opposite Richard’s, he is recovering from a stroke and is relearning how to walk, he talks briefly to us of his shock at having had a stroke. In the bed diagonally opposite to Richard's is Fred, his wife Freda sits at his bedside, he nods to us and attempts to say something but words fail him. He too has had a stroke. It is at this point, about 3 o'clock in the afternoon, that the physiotherapist Jean and her helper come into the ward to give Fred his session of physio. The curtains are drawn around Fred's bed and his session begins, almost immediately there are screams and shouts from Fred, and very loudly he tells the physio to fuck off, this is followed by a fusillade of screams and expletives. Fred is a new patient on to this ward, his wife tells us that he never used to swear but since having his stroke he is inclined to let rip and particularly so at the physio, presumably because she causes him some pain. Prematurely, Fred's session finishes and his curtains are swished open, Fred is given a little pep talk by the physio, something along the lines that he must co-operate and work hard during his sessions in order to get better. Physio Jean and her helper now come across to Richard's bed, Dawn and I are ushered away and Richard's curtains are closed. I found Fred's antics, his screams and expletives mildly amusing but I completely failed to take into account what effect this might have on Richard. He has been brought here against his will to a place he does not know and amongst people he has never seen before, people who close curtains around your bed and make you scream. And now the curtains have been closed around his bed, he is on his own with the people that make you scream, and scream he does. This is too much for Dawn and she hurries out of the unit. I peer through the curtains to see what is being done to Richard, his clenched right arm is being slowly extended a little and then a little more resulting in his shouts and screams, and then Richard too tells the physio to fuck off. Probably he is just copying what he has heard Fred say, but I cannot be sure of this and am concerned at the degree of pain Richard appears to be in. Physiotherapists seem to belong into one of two camps. The first holds to the view that if it isn't hurting it isn't working, the second feels that if it's hurting then it's time to stop. This physio quite definitely subscribes to the former view. Richard's session also ends prematurely and Dawn returns. Jean explains to us that it is important to extend Richard's arm out of its clenched position, she tells us that this can only be done a little at a time and that it is rather painful. Once she has succeeded in opening Richard's arm a little, she will make a splint that will hold Richard's arm open and that he will wear the splint for short periods during the day, thus enabling her to build up on the degree of extension that Richard will tolerate. She goes on to tell us that if his arm was simply left as it is, it's permanently clenched state would cause him very great pain and would likely lead to infection setting up in the closed inside area of his elbow. It is all of course eminently sensible but from Richard's perspective it must seem as if we have taken him from a place of comfort and security and put him in a place of pain and threat. Looking back on this period, I see clearly that unwittingly I have completely failed him and that not surprisingly he has lost trust in me. Fortunately there is to be a person, a young student nurse whom is to become a friend and confidante to Richard, someone in whom he can re-invest his trust, and someone to whom I shall be eternally grateful.

There are no set visiting hours at this unit, and we are free, indeed encouraged, to spend as much time here with Richard as we wish and we are encouraged to become as involved with his care as we feel able. For it is the remit of this unit not only to prepare Richard for the outside world, but to prepare us to look after Richard in the outside world. It is 8pm, Dawn and I make our way home, the 30-minute drive allows us time to reflect on Richard's new domicile. It has a different feel to that of Ormskirk Hospital, there Richard was unique, he was the only young person in a ward of mainly elderly people, there was clearly a lot of sympathy for a young man whom had suffered a terrible accident, one that would affect the rest of his life, and the nurses there mothered him. Whereas at Fazakerley he was amongst people nearer to his own age group, people whom had all suffered life changing illnesses or accidents, he was no longer unique and therefore no longer special. There is perhaps also a slight cultural difference in the attitude and demeanour of Liverpool people that bestows upon them a slightly hard edge. A hard edge that it is very quickly picked up on by non-Liverpudlians whom are badly bruised by what life has dealt them.

 

Little Angel

 

Thursday April 27th, Richard's second day here. When we arrive Richard is having a physio session and the curtains are drawn around his bed, there is quite a lot of noise coming from his corner with the occasional shout of Everton rising above the rest of the noise. Physio Jean has had a good idea, and has told Richard to shout Everton each time she hurts him, as this is much nicer than him shouting fuck off at the top of his voice. The ploy works very well, unfortunately however the same cannot be said for Fred who continues to give free rein to expletives during physio sessions.

Whilst at Ormskirk Hospital Richard was measured up for his own wheelchair, this is to be supplied by the Preston Group of Hospitals as our home address comes under their remit. It is likely to be some weeks until they deliver the wheelchair and so Astrid the occupational therapist has loaned us one of the unit's newest (in fact it is brand-new) wheelchairs. This is a wonderful contraption, it looks very futuristic and extremely comfortable. It is clear from its design that it is to cater for patients who cannot support themselves at all, providing support not only for bottoms, but also for back, head and neck. It seems to be infinitely adjustable, and when we hoist Richard into the chair it is quite clear that he is comfortable in it. As we get further into the spring and summer we are going to be able to enjoy many walks in and beyond the hospital grounds using this very fine Swedish made wheelchair.

It is just after teatime and James has come to visit Richard and is quite touched when Richard says that it is nice to see him, and that he wants to have his hair cut like James's. Dawn has put in her diary, not if I can stop it. James's haircut is not far removed from a skinhead.

Part of the training for student nurses is to spend a few weeks in the various wards of the hospital, and it happens that at this time there is a student nurse here in the rehab unit, her name is Marie. We are not to become aware of her existence for another couple of weeks yet, but she has noticed Richard and has made it her business to spend a little time with him, she thinks that he is very aware of what is going on around him and is concerned that others do not seem to share her view.

Monday 1st May 2000. Today is a bank holiday and so there are no therapy sessions, which means that Richard has gone three days without a therapy session. We do of course attempt to fill these gaps by carrying out bed exercises with Richard, one of which is to sit him on the edge of his bed with Dawn stood in front of him, and me kneeling on his bed behind him. From this position we can move him from side to side taking him as far to one side as he can go without him losing the ability to straighten up again, and then going as far as possible the other way, not surprisingly he shows considerably more strength on his left side than on his right, he has very little use in his right leg and no use at all in his right arm and so cannot use these to push, or to balance with. I daresay it's unavoidable, but I had hoped that at a specialist rehabilitation unit such as this, there would be weekend and bank holiday cover for patients such as Richard.

 

A Sense of Unease

 

It seems to be the policy of the unit that unless the patient is undergoing a therapy session then he is left to his own devices, which in Richard's case means that after his morning wash he is put back to bed and stays there, until we get to him in the afternoon. He is of course given lunch but apart from that he has to entertain himself. He does this by watching the other two patients in his side ward, but they are well enough to take part in the general activities that go on in the day room, and so once they have departed Richard is on his own. At Ormskirk Hospital Richard was in a room on his own all the time, but there the nurses made frequent visits to his room and chatted to him. His condition at that time was considerably less good than it is now and so he spent a lot of his time asleep. Now I think he needs the stimulus that company would provide, which is why I was pleased that he was no longer in a room of his own when he came here, but unfortunately it seems that he does spend too much time on his own lacking stimulation. There doesn't seem to be a shortage of nurses and auxiliaries, but their time is taken in group activities either in the day room, or sitting outside on the patio enjoying the spring sunshine and smoking with those patients that enjoy a cigarette.

I've noticed that the staff here seem to fall into two distinct groups, one group is very health-conscious, cycles to work wearing protective headgear and does not smoke. The other group drives to work, and enjoys smoking cigarettes either on the patio, or in the smoking room. Very surprising that a rehabilitation unit populated by patients many of which have suffered brain damage through strokes should be looked after by nursing staff a fair proportion of which themselves smoke. Considering the known link between smoking cigarettes and the increased risk of strokes and other diseases I would have thought that there would have been a total ban on smoking, both for patients and staff whilst in the hospital. Within the two groups, smokers and non-smokers, there appears to be a degree of cliquishness, with a tendency for certain staff members to be always in each other's company. I could well be wrong and of course I am biased, but I cannot help thinking that if there was less of this coupling then perhaps there would be time enough to give my son the company and stimulation that he so clearly needs. I very much want to feel that this is a very fine rehabilitation unit, and that my son is continuing to receive (as he has done up to now) the very best of treatment, but doubts are just starting to creep in.

Richard is not short of visitors today, first James and Janet come to visit and they take Richard for a walk around the hospital grounds in his new wheelchair. They tell us that he has kept his head well up for the duration of the walk, but it is clear that this has tired him and so we put him back to bed. James and Janet leave, they have been here for a couple of hours, and shortly afterwards Richard's business partner Andrew arrives with his girlfriend Claire. With a little prompting from us Richard manages to say hello to Andrew and Claire but it is clear that he is by now extremely tired and so Andrew and I go outside to talk leaving the girls at Richard's bedside, he is now asleep.

I ask Andrew how the business is doing, he tells me that it's doing fine but he has a question for me, he wants to know whether I think Richard will at some point return to work. I tell him that I think it extremely unlikely that Richard will ever work again. Andrew then tells me that he has a problem in that Richard is technically still an employee of the company, and that the accountant wants to, as it were, tidy things up by having Richard's resignation. I say to Andrew that Richard simply doesn't have the mental capacity to resign, and I have no legal right to tender his resignation for him. However I'm sure that there must be some legal remedy available to Andrew to overcome a situation such as this, and that I have no intention of claiming any sort of benefit, cash or otherwise, from their embryonic company. This has made clear to me a difficulty that I'm likely to face more than once in the coming months, namely that I have no legal right to speak on Richard's behalf. I cannot sign papers for him, I have of course let his bank know the situation, I have written to the student loans company, and I am in the process of claiming from his car insurance company the value of his written off car, but it is certain that at some point I am going to have to engage the services of solicitor to steer me through the legal difficulties that are bound to arise.

Tuesday 2nd May. Dawn has suffered chronic spine and rib pain for a number of years now; she has osteoporosis in her spine and ribs, and cervical spondylosis. Over the past two years the painkillers that she uses to suppress the pain have become less and less effective, and following various consultations with various doctors she has been given a place on a pain management clinic. The clinic runs for four weeks, and as good fortune would have it is situated within this very hospital. She was due to have started the clinic the day after Richard had his accident, this of course was cancelled but now she is free to attend, and her course starts today. I drop her off at the hospital at 8 am, as I drive away I look across to the younger rehab unit and enjoy a warm feeling knowing that Richard is in there, and that Dawn is just a couple of hundred yards away in the Walton Centre. Should anything go wrong she could hardly be closer, and would be with him in minutes.

My day's work goes well and I'm back at the hospital by 2pm. Richard is in his bed and gives me a slight smile, I give him a hug and explain why Dawn is not with me, but that she will join us later on. I suggest that we go for a walk as it's a nice day, and he seems okay with that, so I use the hoist to put him in his futuristic wheelchair. The hospital grounds are extensive and we have not been round all of them yet, so I determine that today we will go up and down every pathway and roadway that there is. Whilst we are walking I talk to Richard about what has happened to him, I take a long time talking to him in detail about his accident, and I try to explain why it is that he cannot remember much about it, indeed by now he seems to remember nothing of it at all. I talk to him about his four weeks at Manchester Royal, and about his four months at Ormskirk General, and now about the time he is to spend here at Fazakerley. I tell him just how important it is that he tries really really hard to do his very best in his physio sessions, and that to a very large degree his speed of recovery will be determined by just how hard he works, and by just how much he really wants to get better. He shows every sign of listening to me intently, I can only hope that he fully understands everything that I've said to him, and that I haven't gone too far with the detail that I have given him. I look at my watch and am surprised to see that two hours have passed, and so we make our way back to the rehab unit. These grounds and this rehab unit are starting to feel like home to me now, I hope Richard feels the same way.

We have been back in the unit for 10 minutes and I have put Richard in his bed, the walk or the conversation or perhaps both have tired him out, he is barely awake when Dawn joins us at 4:30pm. She tells us of her first day at the pain clinic and I give Richard a shave but he is too tired to be bothered having his hair washed, and he eats very little for tea.

Wednesday 3rd May. It takes me a little longer to finish my day's work today and it is nearly 3 o'clock when I get to the hospital. Richard is having a physio session and is on a tilt table, and is shouting quite a lot but he is not swearing. I keep far enough back so that he does not see me, I do not want to interrupt his session or take his attention away from what he is doing. The session comes to an end and the general feeling is that he has done quite well. Dawn joins us at 4 o'clock, she is very sore from the exercises that she has done. Richard is tired after his exertions on the tilt table but manages to eat a good tea and finishes up enjoying some ice-cream.

 

A Visitor and a Smile

 

During the early evening a middle-aged lady comes on to the ward, she's pushing a young woman in a wheelchair; the ward manager follows her and brings her over to our corner. He introduces us to one another, the young woman's name is Janet and she has recently left the younger rehabilitation unit after spending one year here. She had a road traffic accident very similar to Richard's and suffered similar injuries but had remained in a coma for considerably longer than Richard. It had looked as if she was not going to come out of her coma and would remain in a persistent vegetative state, but slowly she started to respond to her mother's voice and began to regain consciousness. She had then come to this rehabilitation unit, and after a year of physiotherapy, occupational therapy, and speech and language therapy she was now very much better. I asked Janet many questions; I wanted to know what she remembered of her life prior to the accident and what her memory was like now. She answered intelligently and with only slight difficulty, she told me that she did have memory problems but that her main difficulty was the frustration she felt at not being able to do what she wanted to do. She could do most things but not easily, she could now even walk a little but once again it was with difficulty. Then she smiled, her face lit up in a radiant glow, and Richard smiled back. It was a lovely moment. I thanked Janet and her mother for talking to us so frankly, she said that it was a pleasure and that she hoped that Richard too would make a good recovery. Hear! Hear! to that.

A familiar pattern is starting to establish itself; I get to the hospital an hour or two before Dawn finishes her pain clinic, and take Richard for a walk. And I use our walks as a backdrop for serious conversation, always the same conversation, the very real importance of wanting to get better. I try to be tactful but as direct as I dare, I stress to Richard that the staff here are the best possible people to get him back on his feet, that they are the best possible people to get his brain working fully again, but unless he really tries and unless he really wants to get better then their work will be for nothing. I am stressing this to him because the opinion of the therapists and doctor on the unit is that Richard is not trying, the feeling is that he is depressed. They have told us in the first of our group meetings that they want to tap into Richard, they want to get him to hold his head up, to speak more, to feed himself and to use the nurse call button.

Tuesday 9th May. Apropos the general consensus that he is depressed, Richard has had a CT scan, this has been to check that the shunt is functioning and that there isn't a build up of cerebrospinal fluid around the brain causing excess pressure. He has complained of headaches and continues to be somewhat detached; the CT scan shows that the shunt is working properly which serves to reinforce the view that Richard's attitude and demeanour are due to depression.

The ward manager has advised me that on Thursday, Richard is to have botulinum toxin injections in his right arm, this is to relieve the muscle spasm which will thereby allow the physiotherapist to extend his arm further. The plan is that some four or five days following the injections, a new splint will be made for his arm which will hold it in a much more open position. The only thing I know about botulism is that many years ago there was an epidemic of food poisoning deaths caused by botulism developing in tins of salmon, strange to think that this deadly agent is now to be injected (albeit in tiny quantities) into my son's arm. Stranger still is that over the coming months, botulinum injections are to become a cosmetic surgery fad indulged in by those who have nothing more to worry about than a few lines on their foreheads.

Thursday 11th May. I am peering out through the day room doors looking toward the main part of the hospital, Richard is somewhere there having his injections. The ward secretary (a very kindly woman) tells me that Richard went across about two hours ago accompanied by a young student nurse named Marie, and that if I want to I can go across and join them. I thank her and set off across the staff car park, just as I do so an ambulance coming in the opposite direction turns and heads toward the rehab unit. I recognise a young nurse sat inside the ambulance, she smiles at me and gestures towards someone lying down whom I cannot see. It is of course Richard; I turn around and join them at the entrance to the rehab unit. Marie tells me that he has had his injections with a minimum of fuss and is probably now ready for a belated lunch. This is the first time that I have spoken with Marie but I have become aware of her professional interest in Richard and it is quite clear that he is relaxed in her company. There was a delay with the injections and Marie is now behind schedule, she smiles at Richard and says that she will see him again tomorrow. She really is a lovely young woman and I am glad that she is befriending my son. He is quite perky and has appetite enough to eat a little curry and rice, some chocolate dessert and a banana. He then announces in a marked Liverpool accent that it's the end of the working week!

Friday 12th May. Dawn's pain clinic finishes early on a Friday and so she gets across to Richard before I do. He is asleep but wakes up soon after she arrives and decides that he wants to listen to a CD, a Tom Jones CD. It had surprised me on one of our visits to Richard's London flat to find out that he was a Tom Jones fan, particularly given that Tom Jones is even older than I am, I asked him on that occasion why it was that he liked Tom Jones. The reply was, because he's a geezer. I'm still none the wiser. Mercifully the singing of Tom Jones was interrupted by physio Jean whose arrival at Richard's bedside along with a tilt table meant that a physiotherapy session was about to start. We took this opportunity to go across to the cafe and when we returned 20 minutes later Alice the speech and language therapist told us that she had today heard Richard's voice for the first time. He had said his name to her but nothing else. She is a very pleasant woman and I have no idea why Richard has decided to give her such little co-operation. Later on in the afternoon Richard receives a surprise visitor, she is Janine, she was Richard's girlfriend for the two weeks leading up to his accident, and has visited him several times both at Manchester Royal and Ormskirk General, and now she has taken the trouble to come here. She is so young looking and always gives me the impression of being on the verge of tears. I feel that she needs looking after, which completely ignores the fact that she is a self-reliant young woman, drives her own car and has found her way here successfully. None-the-less when her visit with Richard has finished I walk her back to her car lest she should be molested by demons. Perhaps it's a good thing that I have three sons and not three daughters.

I'm minded to think that the women in Richard's life set high store by loyalty, for today it has been Janine visiting, and tomorrow it will be Cheryl. It is a considerable trek that Cheryl undertakes with each visit that she makes, three hours or so each way on the train and at considerable cost. I realise of course that this degree of loyalty will not be maintained for very long, the lives of all of Richard's friends will move on, rightly so, but Richard's life is anchored to 24th November 1999 and can move but slowly from that point on. As his parents, Dawn and I are completely willing to anchor our lives to the same point in time, it can be no other way, life has changed irrevocably for all of us. Richard's brother’s lives will also move on and again this is rightly so, but in their case an invisible thread will attach itself to them and prevent them from completely letting go. Such is both the burden and the beauty of family. I do not know what lays ahead, my life has been untouched by disability, and so when I think of the future my only wish is to look after my son but I do not really know what this entails. Dawn however knows fully the burden taken on by those who care, and yet she feels for Richard and will care for Richard no less than if she had been his birth mother. When she married me, the vow she took of for better or for worse she meant, but what she does is done not out of duty, it is done out of love. Richard and I are indeed lucky to have the love of such a woman.

Sunday 14th May 2000. Today is Richard's 23rd birthday anniversary, who could have dreamt that the circumstances of his 22nd and 23rd birthday anniversaries were to be so very different. We have bought him a watch, it has a clear easy to read display, and he seems to be pleased with it. Once again it is a pleasant spring day and so we go for a walk, I talk to Richard of the future, I tell him that at some point he will be well enough to leave Fazakerley Hospital and come home with us. Knowing however of Richard's keen sense of independence I stress to him that when he comes home to us it will be for exactly as long as he wishes it to be. Maybe for just a few weeks while he gets his bearings, or for the rest of his life if that is what he wants.

It is time for us to go home. I hate this part of the day, I hate leaving him even though I think he has had enough of us and is quite happy for us to go. Nigel, one of only two male nurses on the unit, is stood at the exit as we leave, and I vouchsafe to him the sentiment of hating this part of the day, his is a sensitive soul and he knows exactly what I mean. "Don’t worry," he says, "we'll look after him"

Later in the evening Andrew rings to tell me that he and Claire have visited Richard and have just left. Richard had showed them his new watch and had managed to tell them that we had left shortly before they arrived. It was in broken fashion but, none-the-less, he had got his meaning across.

Over the next few days Richard is to spend a little time on one of the unit's computers, he is becoming physically stronger but is still withdrawn and quiet. Following his botulinum injections of a few days ago he is to have a splint made which will hold his right arm open more than would have been possible prior to the injections.

Wednesday 17th May. A rather worrying day today, Philip the other male nurse on the unit who is in charge of the unit when the manager is absent, has advised us that Richard has a rather severe bowel infection and is being given an antibiotic. He is very quiet and tired and is plagued with diarrhoea, he also vomits. Even so he listens to his brother Michael telling him about the deal he has got on his latest mobile-phone. Dawn is convinced that he understands everything that is being said to him. I as usual have my doubts.

 

Another Setback

 

Thursday 18th May. It is 11:45am and I am at work, I have got through my work particularly quickly and am just finishing the final call when my mobile phone rings. It is Dr Mallard at the younger rehab unit, Richard has had a severe epileptic seizure, they have not been able to stabilise him and he is now in the A and E department of the main hospital, the line is a poor one, but I am able to ask her to get that message through to Dawn who is in the pain clinic, she will be with Richard within minutes. I set straight off to the hospital ignoring speed limits and wondering just how much more Richard can take. I think I also wonder how much more I can take. I arrive at A and E in a semi panic, and am taken into a cubicle, Dawn is already there, Richard is wired up to a heart monitor and has a cannula going into his arm. Dawn is ashen faced, she tells me that rehab tried diazepam and then transferred him here. Here they have given him intravenous Phenytoin and this has controlled the fit so far. This is the third crisis that he and we have faced since his accident and the strain of it is awful, we watch him for an hour, he is unconscious. From time to time A and E staff come into the cubicle and check the monitor. This is a very busy unit and its staff must be exhausted by the time they finish their shift. I am looking at Richard and he opens his eyes but these are not eyes that see anything, suddenly his pupils describe a near perfect arc of movement and his body convulses and noises of a kind that I have not heard before come from him. It is another fit, staff immediately come into the cubicle, a syringe is attached to the cannula and something is injected into my son's bloodstream, within seconds the fit subsides. To the staff it is all part of their working day, to us it feels as if the end of the world is very very close.

 

It is now at 8:00pm, there have been no further fits and it is decided that Richard is to transfer to the Walton Neurological Centre (within the same grounds) for blood tests and a further CT scan, this in order to check that the shunt is working. This is the North West's premier neurological unit and we are lucky that it is so close to hand. By 11:30pm all the tests have been done and nothing untoward has been found, it would seem that his fit has been a spontaneous one and that epilepsy is to be a legacy of his accident. Apparently it is not uncommon for epilepsy to result following a severe brain injury, and unfortunately Richard's type of epilepsy is life-threatening because it does not terminate of its own accord. If the fit cycle is not broken then he would remain in a seizure which would severely affect his heart rhythm reducing the blood flow around the body and to the brain, resulting in further brain damage after about one-and-a-half hours, and death after about two hours.

Friday 19th May. Richard has had a quiet night and further tests have failed to show any other reason for the severity of the fit. He is very very weak and drowsy and is asleep most of the time. Dr Mallard from the younger rehab unit pops in to have a look at Richard she is upbeat and says it will not be long before he will be back with them, this is reassuring and I thank her, as she leaves, one of Richard's friends, Kelly, (a Lancaster girl) comes to pay him a visit. She is a kindly girl and although now living in Edinburgh, takes the trouble to come and see Richard whenever visiting her mother in Lancaster.

The three of us are gathered around Richard’s bedside, talking, when a nurse comes up to us, there is a telephone call for me. It is my mother, she tells me that Michael is in Wigan hospital, his left lung has collapsed. This is a bolt out of the blue, some years back Michael suffered a right side pneumothorax, several of them, but up until now his left lung had been fine. Dawn and Kelly stay with Richard and I drive to Wigan hospital, when I get there Michael has just finished having his left lung aspirated, and much to my relief looks quite well and I am advised that provided he is not on his own, he can go home. Arrangements are quickly made for Michael to spend the night at his brother James’s house, and I am able to make my way back to Fazakerley. Given Michael’s history, I think it quite likely that he will need a similar operation to the left lung as was performed on the right a few years back, and on that occasion the operation (pleurectomy) was carried out at Wythenshawe hospital Manchester. This was the hospital that Richard was taken to immediately following his accident, and I dread the prospect of going there again, for it will bring back fearful memories of that awful night last November which was the start of the roller coaster ride that we are still on.

Monday the 22nd of May and today Richard is going back into the rehab ward, he is much brighter, more like his pre-seizure self. He was quite a bit better yesterday and enjoyed a second visit from Kelly; she is a thoughtful lass. His appetite has returned and he eats well, half a banana some corned beef hash, and then later a little turkey, potato croquettes and cabbage. He has remained awake all day but now as we leave he is sleepy. Driving home we are a little more relaxed, and Dawn decides that tomorrow she will return to the pain management clinic, hopefully to pick up where she left off last Thursday.

Friday the 26th of May, I take the opportunity during a quiet spell whilst waiting for Dawn to finish her session at the pain management clinic to once again emphasise to Richard the importance of him wanting to get better, and of the need for him to put a lot of effort into his various therapy sessions. Janine has come to visit, this is to be her final visit to Richard, and really she has been remarkably loyal. For she had only known Richard for the two or three weeks leading up to his accident, and has visited him at Manchester Royal, Ormskirk General, and now Fazakerley, and I think has realised that there is no viable future in her relationship with him. Thank you Janine for your loyalty and your steadfastness, one-day you will be a very fine partner to someone, unfortunately that someone will not be Richard. Janine tells me that when she visited two weeks ago Richard told her that he didn’t like where he was. Once again I am forced to face the fact that Richard chooses not to confide in me now, he has confided in Janine and he confides in Marie the young student nurse that is to play such an important part over the coming months, but he has lost confidence in myself and in Dawn. After all it was us that took him from his place of sanctuary in Ormskirk hospital and placed him here, somewhere that he doesn’t like with people most of whom he does not trust, it is little wonder that he chooses to place his trust in others. I try to explain to him that this is a hospital and is not a nursing home, and that one-day he will come home. He eats most of his tea, and I read to him his favourite newspaper. Driving home, Dawn and I quietly reflect on the situation and on how we may win back he his confidence.

 

Misgivings

 

Sunday the 28th of May. Richard was eating his pudding when we got there, and as Dawn has put it in her diary was wet up to his ears. He wears a device called a continence sheath, this is connected to a flexible pipe which ducts away his urine into a bag at the side of his bed, it’s important to position the pipe carefully so that random movements of his left leg do not pull the pipe out of the sheath, it is this detachment that has led to his bed being very wet. He had also emptied his bowels; he spoke a few words to us and asked us to change his sheets. This is not the first time on arriving at the unit that we have found Richard in a dirty condition. I really want to think the very best of this place but it is becoming increasingly difficult, it is of course quite possible that he had only just urinated and emptied his bowels immediately prior to our arrival, but if so then our timing has once again been impeccable. It occurs to me that the nurse whom had been feeding Richard his pudding must have known the condition he was in, and had presumably chosen to ignore it. But there again, it is just possible that she intended cleaning him up after she had given him his pudding. Another reluctant suspicion that we have is that some of the staff consider Richard to be a hopeless case, and not worth bothering with too much. In an ideal world the people that choose to work with the disabled would do so out of a sense of vocation, and not merely as a way of making a living. Most of the staff here do work hard and are sympathetic but there are a few who slack and spend their time with the easier patients, or alternatively pursue activities within the unit that are mainly of interest to themselves but could loosely be passed off as being of interest to the patients. But at this point in time I am still overwhelmingly grateful to the British National Health Service for saving my son’s life and I simply cannot contemplate taking any of its members to task for what seems to be less than 100% effort and interest.

Thursday the 1st of June. Richard is looking very bright and well today and I am reading him his newspaper, he is in his wheelchair and I am sat at the side of him. As always when I read his newspaper to him I ask him to let me know if there are any articles that looked particularly interesting to him, I am partway through reading a passage when Richard points to a picture of Nasser Hussein, England’s cricket captain, I am delighted by this for I know that cricket is a passion of Richards, and he has recognised the England cricket captain and wants me to read the article. He does have some memory left, he still knows the things that he liked before his accident, I find this very encouraging.

Sunday the 4th of May. Very quiet today and asleep when we arrived, once again he is wet, so we clean him up and put him in his chair and take him into the kitchen to heat up some potatoes (new ones from our garden), enthusiastically he eats the lot. After letting his meal settle we do some exercises with him, we can now move his right arm up to the top of his head and down to his hip, it seems that the physio’s aggressive policy with regard to splinting and exercising Richard’s right arm is starting to pay off. He has a sip of cold lager and pulls a face, he says a few words about the lager but were not quite sure what.

Richard has antiseizure medicine three times a day and one might have assumed that this medicine would be given at eight-hour intervals, but there seems to be quite an overlap between the medicine given at lunchtime, this medicine is given at any point between 12 noon and 2p.m., and the medicine given at teatime, this medicine being given at any point between 4:30p.m. and 6:30p.m. and we wonder if the closeness of these two doses is causing Richard the severe tiredness and trembling pupils that we have noticed. We have taken to calling this effect his carbamazepine haze, carbamazepine being the drug that he is changing over to in an attempt to control his seizures. It turns out that this is correct, ideally these medicines should be given at eight hour intervals, and I find it surprising that the hospital’s medicine rounds cannot be geared to give a patient his medicines at the correct times for him rather than at the correct time for the hospital medicine round.

 

Totally Unexpected

 

Thursday the 8th of June. So far, this week has been a good one, and it seems to us that Richard is starting to be a little more responsive, and so when the ward manager invites us into his office for a talk, we go in quite light-heartedly and expecting good news. The news however is not good, the ward manager tells us that at a regular meeting during which progress of the patients is discussed it has been decided that Richard is not making the kind of progress needed in order to keep his place in the rehabilitation unit. He then advises us that we need to consider where we are going to place Richard next. This dumbfounds me, I splutter out that we thought he had had quite a good week and then can think of nothing else to say. I have found throughout my life that when confronted with something that is totally unexpected I seem to seize up, I cannot think logically and fail to make any of the points that somebody with a sharper mind would be making. I have to have time to think my way through things, and am certainly not able at this juncture to argue Richard’s case for him. The ward manager goes on to tell us that the general feeling is that Richard is severely depressed and that some thought is being given to putting him on antidepressants, but that if this fails to bring about an improvement then he will lose his place at the hospital. Lamely I ask the ward manager that if Richard is to lose his place, then what next? He answers that the logical next step for Richard would be placement in a nursing home. I am horrified at this suggestion, my son is only 23 years old for god’s sake, a nursing home is no place for a 23-year-old. We leave the ward manager’s office in a stunned state of disbelief, it seems that Richard has just six weeks left here and if by then he has not proved his worth this establishment is ready to put him in the bin. What was the point of the round-the-clock intensive care lavished upon Richard by Manchester Royal, and the patient day by day care given to Richard at Ormskirk General if it is to culminate in this 23-year-old being dumped in a nursing home by the Fazakerley Younger Persons Rehabilitation Unit.

I have been on holiday this week, and have very much appreciated not having to rush through a day’s work in order to be able to get to the rehab unit as early as possible, and now after what the ward manager has told us, the prospect of returning to work next week is for me unthinkable. A week on Monday we have a group meeting with the hospital staff at which we will be advised of Richard’s progress, and, thanks to the meeting with the ward manager we now know what is coming. I must prepare a defence for Richard; somehow I have to get across to the people here that they are just not giving Richard a fair crack of the whip.

Friday the 9th of June. I have been to see my GP (family doctor), I’ve explained the situation to him and he has signed me off work for two weeks. Knowing that I have a further two weeks off work has eased the pressure on me considerably; I feel that now I can set about making a defence for Richard. What I don’t know at this stage is that I have worked my final day for my employer, my GP is to sign me off work for a total of 26 weeks and then I am to take early retirement. And so as yet I do not know that I have in effect retired, just as well, for my mind is not ready to make that step just yet.

Monday the 12th of June. On looking at the white-board outside Richard’s ward to check on his therapy sessions for the week I notice two things, firstly that he has no therapy sessions for today and yet all the other patients have one, two or even three sessions marked down for the day. Secondly the colour black is showing for Friday afternoon, this means a session with the psychologist, and I wonder if this has any connection with the ward manager’s advice that we should give consideration of where we should place Richard next. I talk with Dawn about the lack of any therapy sessions for Richard today, and I mention it to a nurse, she tells me that there are various meetings on, and that that is why Richard has no sessions marked down for today. I think about this and become angry, it may well be that there are various meetings being held, but how come despite that, there is time for everyone else to have therapy sessions, and yet for my son whose needs are greater than anyone else’s in this unit there is no time. I decide that I will have this out with the ward manager, but he is not available, he is in one of these bloody meetings. The ward secretary, a kindly and considerate woman says to me that she doesn’t think that it’s deliberate and is probably just an unfortunate coincidence. I’m not convinced by this, and still in an angry frame of mind go in search of one of the therapists, I find Jean the physiotherapist in her office and give her a very unfair berating. I tell her that I think it’s appalling that having decided that Richard isn’t worth bothering with, that now they can’t even find time to give him his sessions. Poor Jean attempts to tell me that it is because of the various meetings going on, I cut across her attempt to placate me and ask her why is it that if everybody is tied up in meetings how come all the other patients are marked down for sessions, and that it is only Richard that is being dumped in this fashion. Looking back on it, I think it probably was just an unfortunate coincidence, but Jean did not have an answer to my final question, and I left her with her unconvincing argument and went for a walk with Richard and Dawn.

 

Angry Turmoil

 

We walked through the hospital grounds and out onto the main road and headed in the direction of the city centre. After half a mile or so we came across, on the right-hand side, a cemetery, Kirkdale cemetery, my mind still in angry turmoil found the quietness of the cemetery attractive and so we went in. There on the right-hand side was the first grave, a rather grand affair and I assumed it to be the grave of a politician or some other notable of the area, and with cynical disregard I went up to it, probably to sneer. Within seconds my cynicism and sneer were gone for this was the grave of Paul Keegan a 20-year-old soldier whom had lost his life in Desert Storm the first Iraqi war. The inscription read: To the world he was a soldier, to us he was the world. Simply the best. Above the inscription was a picture of Paul Keegan, I looked at the picture and I wept, for in my mind’s eye the picture was not that of Paul Keegan, it was that of my son. My sensitive wife came to my side, and knowing exactly what I was feeling said to me, that isn’t Richard, Richard is still alive and he isn’t going into a nursing home, he’s coming home with us. I hugged her, and I hugged Richard. After a walk around the cemetery, a beautiful cemetery in the heart of the Liverpool suburban sprawl, we went back to the hospital. As we walked back I thought about Paul Keegan and of how he had lost his life, and of the purposelessness and evilness of war, in my mind I saw a picture of Richard as a young soldier in his Welbeck days, and in my turmoil transposed the picture of Richard with the grave of Paul. The pressure of the last six months culminating as it has in Richard’s rejection by Fazakerley has put me close to something very very dark, and at the time when I need to be thinking clearly I am instead confusing two different realities. No one should have to make important decisions when so emotionally stressed, but I am the only one that can do so in respect of Richard and I need help.

Help of a sort came from the Internet, I knew nothing of antidepressants but felt very uneasy at the thought of them being used on Richard, and so turned to the Internet for information, and information there is aplenty. Everything that I read convinced me that antidepressants were not the right thing for Richard, the side-effects are legion and awful, and the administration of antidepressants requires feedback from the patient. I learned from my Internet research that given Richard’s cognitive disorder and his epilepsy the best choice of drug would be Desipramine, which is an antidepressant from the heterocyclic family of drugs. The dose can be anything from 100 to 300 mg per day and amongst its symptoms and side-effects are: blurred vision, constipation, drowsiness, dry mouth, low blood pressure, allergies, confusion, increased appetite, insomnia, racing heartbeat/palpitations, skin rashes, seizures, sexual problems. And I wondered just how Richard was to communicate to us any of these problems should he experience them, also one of his antiseizure drugs was already causing him facial acne and the other antiseizure drug was causing his pupils to dilate and bobble. My feeling was that he had enough symptoms and side-effects from the drugs that he was already taking and needed to take, and that I did not want to add to these in any way. I had already been told that it would require my permission for Richard to be given antidepressants, and so I made my mind up that I would give no such permission. But at the same time it worried me that I may in the process be denying Richard relief from depression if that’s what he was suffering. I had my doubts as to whether Richard had the intellectual capacity needed in order to suffer depression, many questions went through my mind, but there were very few answers.

Friday the 16th of June. It is our meeting with the psychologist, she has a warm Irish accent and we spend two hours talking to each other. She wants to know about us, about how we live and our relationship with Richard. She wants to know our thoughts at the time of the accident and about how we have coped since. Then she turned her attention to Richard and with skilful questioning learns of the type of young man that Richard was. I am relieved when she tells us that antidepressants are not the only answer, and then she surprises me by saying that she thinks Richard needs to cry, even that we might all cry together. I tell her that apart from him weeping when leaving Ormskirk hospital, the last time I had seen him cry was when he was 12 or 13 years old, and that this was after watching a TV programme about a man with Parkinson’s disease, depicting the effect on the lives of the man and his family. I told her that I had instinctively felt that I should not question Richard as to why he wept, but could see only two possible reasons, sympathy for the man or fear that the same thing might happen to him one-day. To counter the first I helped Richard to see that the man was in fact happy and enjoyed his quality of life despite how it seemed to us. And to counter the second I had told him that it was extremely unlikely that he would develop Parkinson’s disease or suffer anything else that would cause his brain not to function properly. The irony of this did not escape her. She then gave me a piece of advice that has stayed with me to this day, she told me that I must be a strong advocate on Richard’s behalf, that I mustn’t fear to fight on his behalf and I must challenge anything done to Richard if I felt that it wasn’t in his best interest. And so our meeting ended.

The young student nurse Marie in whom Richard has such trust has finished her stint in the Younger Rehabilitation Unit, but has kindly offered to come in her own time and to try to involve Richard in playing games, Snakes and Ladders, Connect 4 and the like. Marie has left an exercise book in Richard’s draw so that she can record her efforts and Richard’s performance. This is her first entry; it is for today the 16th of June.

 

Went to see Richard today at 11 a.m. Richard seemed sleepy at first but managed to stay awake until 12:40. He participated in three games of Connect 4, he was able to pick the coins up in a pinch like grasp. I tilted the rack the coins are dropped into toward Richard, sometimes he missed but mostly he managed to drop the coins in. Richard seemed interested and was willing to participate.

Whilst with Richard he had very small amounts of his blackcurrant drink, but refused his dinner, he did try his pudding but didn’t seem to like it much. After this Richard didn’t want to continue to play, so I chatted to him until he started to look sleepy. I told him I would come back tomorrow, before I left, Richard shook my hand then fell asleep.

 

We are indeed blessed that within this rehabilitation hospital, about which I have my doubts, there is this one bright shining star, a little angel whom is to help Richard more than can anyone else, God bless you Marie.

 

The Meeting

 

Monday the 19th of June. Today is the day of the meeting at which we are to be officially told that Richard is not making the grade, the day on which I have to make the best possible defence of his position in order to keep him here, or at least that’s the way it feels to me. I feel a very heavy weight upon me; it seems that unless I put up a very good fight on his behalf then he and we will be shown the door, and that will be the end of Richard’s recovery, he will simply stagnate at this point and go no further. After all how could he go any further, how could his cognitive functioning improve without professional therapists to guide him along the way.

Steve Day has come to visit, this is good for Richard and it is good for us. Steve is a very pleasant young man and has been a good friend to Richard; we feel we can go into our meeting knowing that Richard will be well entertained by his good friend.

I have used the weekend to prepare the best possible case that I can for my son. I have, in turn, thought about each of the therapists here and of the conversations that I have had with them, and I have remembered something that Dr Mallard said to me, and I intend to use all of these thoughts in putting Richard’s case. I have also kept in mind the psychologists advice of a few days ago that I should not fear to advocate strongly on Richard’s behalf, and I feel strengthened by her view that antidepressants are not the only approach.

3:45 p.m. and it is time for our meeting, I am nervous but determined. Dawn and I are invited to sit down, in attendance are the three therapists, the unit’s doctor, the unit’s senior nurse but the ward manager is not there, he is at a meeting elsewhere. This is a bit of a pity for I felt that he may well have turned out to be an ally, I had sensed that he felt Richard needed more time, and should be given more time to prove his worth.

Dr Mallard opened the meeting. She talked about the difficulty that the specialists were having in getting a response from Richard, she also talked about the group’s general feeling that Richard was severely depressed, and of the debate as to whether or not Richard should be given antidepressant drug therapy. Looking at a folder that I had taken in with me she said that it looked as if I might have plenty to say myself, and invited me to have my say. I told the group not to worry about the size of the folder, it was mainly print off’s from the Internet, but that as I didn’t want to miss any of the points that I felt to be important, I would prefer, if I may, to read my notes rather than to rely on memory. This was given the okay, and so I read the following:

 

Richard came to Fazakerley on the 26/04/00, he has had a bowel infection which very probably made him feel unwell for some time, he also had a severe fit that put him out for a week, and yet after just 6 weeks (3 of which were spent in some state of illness) the ward manager said to me, in effect, that if Richard doesn't start to show progress soon, then consideration would have to be given as to where Richard would be more appropriately placed. If any of you had had that happen to you in a 6 week period and at the same time were struggling with a traumatic brain injury and had been uprooted from where you had started to feel safe, and without any say in the matter were placed in an environment you knew nothing of, then just how would your interpersonal skills be!

Richard had his accident on the 24/11/99 and we were told emphatically that he would not recover, we were told 5 days at the most. With excellent acute nursing and then a prolonged period of general nursing AND with Richard's own dogged will he has survived, and now has arrived with you at YRU. In all fairness how can you, after just 6 weeks have given the slightest thought to moving Richard out.

I was dismayed that following this on the 12/06/00 (Monday) Richard had no therapy sessions at all despite all three colours being up on the board, some patients were marked down for all three, yet no time for Richard! I know that Richard is in great need of stimulation and yet on that occasion when you were busy it was Richard that was sidelined.

Alice, a couple of weeks ago you said to me words to the effect that if you could not tap into Richard, knowing what he's capable of, then that was your fault. Have you given up? Astrid, I haven't seen any of your sessions, do you think your wasting your time with him? Jean, I've seen plenty of what you do, and try to emulate it, is your time also being wasted. Dr Mallard a couple of weeks ago you told me that the first 6 months would see the greatest improvement, and I asked was that 6 months from the date of the trauma or from the date of coming onto rehab and you said that in Richard's case it was 6 months from the date he had his shunt fitted. That was 3 months ago, are you not now going to give him his remaining 3 months?

Regarding Richard's depression, given what has happened to him, it would be amazing were he not depressed, but this is surely a reactive depression that can be dealt with by means other than the sledgehammer approach of synthetic drugs. Richard cannot tell you just how badly the side effects are upsetting him, and the side effects are legion and in Richard's case dangerous. Also how will you be able to tell when you have reached a therapeutic level of antidepressant, Richard isn't going to tell you, so if his mood does not change do you increase to the maximum therapeutic dose, or go on to a different antidepressant and start all over again. A problem for all the therapists here is Richard's tiredness, synthetic antidepressants can only worsen this, his anticonvulsants which are essential make him drowsy his TBI makes him drowsy why add to this without at least considering and giving time for an alternative approach.

Perhaps a more gentle approach of focusing on the simpler things that Richard can do and has done, his improved strength, his willingness to help in dressing and undressing, and giving him fulsome praise for any slight advance he makes, thereby starting to inculcate in him a sense that he is getting somewhere and that we value him, perhaps such an approach might start to lift his gloom. However I think this process will require patience and may take several weeks to show through.

Along these lines a young student nurse (Marie) has been working with Richard lately, and has had some success.

You are Richard's best chance of achieving some sort of wholeness, please don't deny him that chance. A monumental effort went into saving Richard in his acute phase and he has had crises since, but something in him has hung onto life, if you deny him now you will be consigning him and us to a state of limbo.

 

Having read my notes I looked at the group, and in particular at the therapists, I thought they looked a little uncomfortable. One by one, the three therapists took up my challenge to say whether or not they had given up on Richard, all of them denied my assertion and it seemed to me that there was a degree of backpedalling going on. Dr Mallard then gave a mild rebuke to the therapists, she told them it should be possible to arrange the therapy sessions in a more even manner when times were busy, and thereby avoid leaving one patient without any sessions. There was a nodding of heads to this, she then turned to me and gave me a mild rebuke also. She told me that even if the decision was taken to remove Richard, and that no decision had so far been taken, then it would be several weeks, even months before he would actually leave, and therefore there would be plenty of time for Richard to improve and for changes to be taken into account. She then added that it simply wasn’t true to say that Richard’s development would arrest the day that he left the unit. She also said that she expected a considerable improvement from Richard over the coming two years, but that that sort of timescale was beyond the scope of the Younger Rehabilitation Unit. They simply couldn’t think in terms of patients staying with them for two years, but that six months was certainly not out of the question. Also she held open the possibility that once back at home if Richard were to show a considerable improvement then it would be quite possible for him to return to the unit for reassessment.

Dr Mallard went on to say that she had her own misgivings over the use of antidepressants in Richard’s case and that they would hold that idea on ice and see how things went, I think she meant that she would see how things went with Marie’s work with Richard. The meeting ended.

Dawn and I were very relieved, Richard was not to lose his place here, at least not for many weeks, and perhaps by then Marie’s magic would have had time to bear fruit. Steve was still with Richard, and by now it was time for him to start his long journey home, we gave Steve our news, thanked him, and he left for home.

Friday the 23rd of June. This has been a good week, Marie has been every day to visit and work with Richard. He has responded to her visits, so much so that we now withdraw and allow Richard to have his time in private with Marie. She is a very pretty young woman and clearly dedicated to her task. Not only is she visiting Richard after finishing her shift at the hospital, but she is also coming from her home on the days when she is not at work. I offer to pay her train fare, but she tells me that her season ticket covers the cost of these extra journeys. Dawn and I both agree that if any of our three sons had brought this young lady home as a girlfriend, we would have been delighted. Under these circumstances she cannot be a girlfriend to Richard in the normally accepted sense, but she can be, and indeed is, a very special friend, and confidante for him.

I have been back to see my GP and he has signed me off work for a further two weeks, mine is a company car and I am well aware that my company will very likely need to take the car from me before long, and so when we are on one of our walks with Richard I go into Fazakerley train station to ask what the daily fare is from Burscough to Fazakerley, and I find that the off-peak fair is £3.40 which is a little less than I had anticipated. However when you multiply this by 14 (Dawn plus me, times the seven days of the week) it comes to £47.60 per week, which is a prodigious amount. Set against this is the saving in diesel that we won’t have to buy, plus the car parking charges that we won’t have to pay, and if we bring sandwiches instead of using the hospital café we can save something in the region of £30.00 per week, leaving a manageable deficit of about £18.00 per week. As of yet I still have no inkling that I have worked my final day at work, and so replacing the company car with my own car has not been a consideration.

Richard’s own wheelchair has arrived, it has been delivered to us by the Preston group of hospitals, and although nowhere near as futuristic looking as his Scandinavian hospital wheelchair, it has the advantage of being collapsible for stowing in the car. It has an extension which can be fitted to raise the height of the back of the chair in order to support the head, and it has a head restraint to help cushion Richard’s head and prevent it from lolling to one side or the other. It also has a removable gel cushion seat, we are told that these gel seats alone cost over £200.00, God knows how much we and Richard are costing the national health service, and I am minded to think of the many times I have grumbled to myself about the amount of income tax, and National Insurance that has been taken from my income. Now I know why, and I’m grateful that I live in a country whose politicians have had the foresight and humanity to institute such a system.

During the week Richard has eaten quite well and seems to be gaining in strength, his physio sessions too are going well, it’s almost as if he knows that he has won his battle, and for the time being is going to keep his place, and that now it is worth the effort. The psychologist has paid us an unexpected visit at Richard’s bedside, and spent some time trying to cajole Richard into responding to her subtle probing, but he has resisted all her gentle blandishments, I wonder if he knows her purpose and is just not prepared to play ball.

We have told the ward manager of our intention to have Richard live with us at home when his time here at the rehab unit is over. He has accepted our decision and has told us that he will get the ball rolling in preparing a care package for Richard’s eventual departure. At nearby Aintree racecourse there is a disability display, at which are all the gadgets and aids imaginable to assist the disabled with their daily lives. We realise that we are going to have to buy a bed and mattress of the kind that Richard currently has in hospital, and are relieved to see that a suitable bed and pneumatic mattress are available for about £3000. This will clean us out financially speaking, but at least we can afford it, and thus we feel that now there is no barrier to prevent Richard from coming home.

In our gleeful naïveté we seek out the ward manager to tell him of our success, aghast he asks have we paid any money toward the bed yet, our answer is no. With a relieved look on his face he tells us that there is absolutely no need for us to buy anything at all in the way of medical equipment for Richard, all of this is to be included in his care package, all we need to do is buy the sheets and pillows. A quality bed and pneumatic mattress system will be provided, as will any medical equipment deemed necessary to support Richard in the home situation. He goes on to explain that this takes a little bit of time to organise as funding has to be arranged from the local authority whose area we live in. A little later Astrid the occupational therapist comes to see us, she tells us that she has been in touch with the occupational therapist from West Lancashire District Council to arrange a meeting at our house with a view to discussing what alterations may be made to the house to make it more usable for Richard. She tells us that providing the layout of the house is suitable, it may well be possible to get a grant to cover 100% of the cost of building a toilet and shower extension to the ground floor of the house for Richard’s use. The meeting has been arranged for Tuesday the 4th of July at 4 p.m. I shan’t ever grumble about paying income tax and National Insurance again.

On a discordant note, one of the female patients has been told to leave the hospital. Her children have been caught stealing from the unit or from other patients, and this has happened on more than one occasion. It is quite beyond my comprehension how anyone whom being looked after within this hospital should then seek to steal from it. We have had odd bits and pieces of Richards go missing, toothpaste, T-shirt, those sorts of things but I don’t think they have been stolen, I think they have just been lost in the hurly-burly of a busy unit. Later, a portable television belonging to one of the patients is to be stolen, unfortunately this is a high crime area, and the hospital grounds, rambling and complex as they are, are a thieves haven.

Peter the man in the bed opposite to Richard’s has now left, and a schoolboy just 14 years old occupies his bed. Matthew has been in a drowning incident and although successfully resuscitated has suffered brain damage, anoxia I believe it is called. We have talked with his mother and shared our respective stories, her son’s predicament seems even worse than ours. When the brain is starved of oxygen, then all of it is to a greater or lesser degree damaged. Matthew at times seems to be conscious, but when so is greatly troubled and cries out as if in fear, his mother is to a certain extent able to pacify him, but should anyone else approach him when he is in this state, then his state is worsened. It is heartbreaking to see, and his mother tells us that one of the nurses (not from within this unit) said to her, it would have been better had he not been resuscitated. I believe that to be a heartless, cruel, and totally useless comment to have made.

Also new into Richards Ward is a young man named Daniel, he is approximately the same age as Richard, and was mercilessly beaten unconscious and then beaten some more. He too is severely brain-damaged, his limbs are contorted out of their natural shape and he cannot speak, however it is clear that he has some understanding of the world around him. We have got to know his mother quite well, she is in her sixties and is divorced. She has a lot of children, some of them still live locally and come to see their brother regularly.

Tuesday the 4th of July. We have missed Richard’s physio session this afternoon because of having to return home with the unit’s occupational therapist in order to meet up with the West Lancs. occupational therapist. The two of them have a thorough inspection of the ground floor, and of the back garden. They agree with us that our sittingroom would convert nicely into a bedroom for Richard, and as it looks out on to the back garden an extension could be built to accommodate a shower and toilet. The OT’s decide that the doorway into Richard’s would-be bedroom needs to be widened in order to more readily accept a wheelchair. They don’t foresee any difficulties in making the ground floor suitable for Richard, the procedure now is that an engineer from West Lancs District Council will come out some time during the next two weeks, his main purpose is to check that there aren’t any technical issues to be taken into account, if all is okay from his point of view then an architect will draw up plans, the scheme will be costed and a proposal will be put before the council for funding and planning consideration. If a grant is made the work will be put out to tender, and finally a builder will be appointed to carry out the work. It seems like a lot of hurdles have yet to be jumped, but we are told that all should be relatively straightforward, and subject to a check on Richard’s financial situation proving satisfactory then a 100% grant will be given. Typically from application (the stage we are at now) to completion, takes 12 to 15 months. It’s quite clear then that Richard is going to be back at home for some six to nine months before the building work is even started. This means no washing or toilet facilities, so we will have to bed-bath Richard and he will have to use a commode for quite a while. All in all a minor problem, and now we can really feel that before long he will be coming home in a controlled fashion and not as a result of losing his place. I don’t know why this matters so much to me, but it does. I wonder to myself if there will be any chance of Richard returning to Fazakerley once the building work starts, I cannot at this point conceive of managing Richard at home whilst substantial building and redecorating work goes on. As with other things I am to change my mind on this.

Friday the 14th of July 2000. Over the past two weeks Richard’s antiseizure medicines have been slowly changed. His new drug Carbamazepine is being slowly increased and his original drug Phenytoin decreased, and the effects of this are quite marked. We have noticed that each time his Carbamazepine dose is increased, he suffers from vomiting and tiredness, also half an hour or so after taking the drug his pupils start to bobble around and he is clearly not properly with us. Also for short periods he appears to go into a trance, this state lasts for only a few seconds and he is then back to normal, we have talked about this to Dr Mallard and she thinks that they may be absence seizures. She discusses this possibility with a colleague of hers at the Walton Centre for Neurology, and it is decided that Richard should have an EEG in order to determine whether his short trances are in fact absence seizures.

Monday the 17th of July and Dawn and I are wheeling Richard across to the Walton Centre, he is to spend, so we are told, two days there, during which his EEG will be done. This involves fixing a number of electrodes to his scalp and wiring them to a computer, which will monitor Richard’s brain activity. We arrive on Cairns ward, put Richard into his room, and are told in rather dismissive fashion that we can go now. We explain the situation to the nurse who is unmoved, and tells us that we can only be there during visiting hours. Meanwhile Richard is becoming uncomfortable and Dawn asks him does he want to sit on the toilet, Richard gives a single blink and so we go through the performance of sitting Richard on a toilet chair, and rolling him over the toilet. Whether it is this performance or just a change of heart on the part of the nurse I know not, but she changes her mind and tells us that we can stay. Richard has meanwhile, to our delight, used the toilet, and so after cleaning him up, we put him in his bed. One hour later our nurse returns and tells us that we don’t need to stay on Cairns ward, we can take Richard back to the rehab unit and come back tomorrow morning for his EEG. We are quite amused by all of this, is it us as a group that has been too much, or is it the obvious workload that Richard represents that has caused Cairns ward to send us packing. This suits us fine, we know where we are on the rehab unit, we have had our fall-outs with them, they know us and we know them. It is a quizzical look from the ward manager that greets us on our return.

Tuesday the 18th of July. Richard has had his EEG during which a strobe light has been flashed at him to no harmful effect, and some sort of computer has taken a very penetrative look at his brain. He is still sporting a plethora of electrodes to his scalp, and these are connected to a recording device, which is monitoring his brainwaves. There is a button on this device and it is our job to press this button each time Richard has one of his absences. Apparently pushing the button puts a marker on the recording, and it is the brainwaves surrounding these markers, which will be studied, in order to determine whether Richard’s absences are in fact absence seizures or just daydreams.

Wednesday the 19th of July. I am at the hospital without Dawn this morning, she has stayed at home to take receipt of a pneumatic mattress and pump for Richard’s bed, also there is a hoist to be delivered. The bed itself is due to be delivered tomorrow morning. I have come to the hospital early in order to wheel Richard across to the Walton unit to have his electrodes removed and to have the recording analysed. I explain to Richard why I am on my own, and I think he has understood me. The electrodes are duly removed, and I expectantly wait for the recording to be analysed, unsurprisingly (in retrospect) I am politely sent away, the analysis will not be available for a few days yet. Richard has had quite a few of his absences, and we have pressed the button on each occasion. The nursing staff have also pressed the button, and so all in all there should be plenty there for the doctors and technical staff to look at.

Everything having been safely delivered, Dawn returns to the hospital and is given the cold shoulder by Richard who it seems has decided to fall out with her for not being here this morning. This is quite amusing, but more importantly shows to us that Richard looks to the both of us to be here and not just for one or the other. A point that has worried me, and I have talked about this to the psychologist and to the therapists, is Richard’s eventual homecoming. We very much want Richard at home but the point that worries me is that our home has never in fact been Richard’s home. He has of course spent time there with us, and when I moved in with, and married Dawn, we decorated one of the bedrooms in Richard’s choice of colours, but nonetheless it has never truly been his home. A further concern for me is that Richard has always been very independent, he was the first of my children to leave home. Having won a place at the Army’s sixth form College at Welbeck, he went straight from secondary school to living away from home at Welbeck, and from there to Manchester University, living initially in the halls of residence and then in a rented flat with Cheryl who was to be his partner for three years. So Richard had in effect left home at 16 and it worried me that this very independent young man might intensely dislike the prospect of not only coming home to live, but of coming to a home that had never before been his. The staff agreed that this could be a problem and said that at the right time they would give Richard a choice, he could choose whether to live with me and Dawn, or alternatively he could choose to live in a nursing home. The very real prospect that he might choose the nursing home option troubled me greatly, but I trusted the staff that it was correct to give Richard a choice. It is important for us all, even those of us that are brain damaged to have at least some control over our lives, but how would I cope with a choice that would in fact mean rejection.

Thursday the 20th of July and now Richard’s bed has arrived at home, it’s been a very tight squeeze getting it in, it is large and metal framed, has a number of motors and servos which serve to give it its infinite number of settings. Head and shoulder angle, knee and lower leg angle, height and tilt are all adjustable, and it is clearly very well built. The men that deliver it show us what it can do, and their parting piece of advice is to let the bed do the work. Very sound advice. Back at the hospital we report to the ward manager that all is now in situ, all that is except Richard. He says to us, how would you feel about having Richard at home this weekend, we of course are delighted. This is normal practice in cases like ours, the would-be carers are given an opportunity to see what it’s like to be unsupported carers for a couple of days, is it all too much, or can we cope. We can’t wait to find out. The ward manager tells us that he has already made a provisional arrangement with Dial-a-Ride, a very inexpensive and charity funded taxi service for the elderly and disabled, to provide the transport for Richard from the hospital to home on Friday, and from home back to the hospital on Monday morning. We are absolutely delighted, and at the same time a little fearful. Life’s delicate child is coming home, albeit only for two days but he is coming home, and we are going to look after him.

 

The First Homecoming

 

Friday the 21st of July 2000, it is 5:40 p.m. and Dial-a-Ride have arrived. I don’t know how Richard feels about this, but he seems excited. Dawn and I are both excited and nervous, the driver pushes Richard in his wheelchair onto the ramp at the rear of the vehicle, then presses a button and the ramp goes slowly up to floor level, he then carefully pushes Richard into the vehicle and attaches hooks from the vehicles floor to the framework of Richard’s wheelchair. Safely secured he is ready for his journey. We are armed to the teeth with medicines, sanitary ware and a whole host of other things deemed necessary for our experiment. Dawn sets off with Richard in the Dial-a-Ride taxi, and I follow behind in the car. Forty minutes later we are home. I cannot put into words my feelings as we negotiate the front doorstep with Richard’s wheelchair, he has been in hospital for eight months, we were told a few hours after his accident that he was going to die, that he would be dead within five days, now eight months later he is home, he is alive and he is home, and I feel wonderful. Clearly the journey has tired Richard and so we put him into his new bed, and with its electronic control pad we get the pneumatic mattress into a position in which Richard is supremely comfortable. Just as we complete this the phone rings, it is James, Richard puts his hand out to take the phone from me and says very clearly, hello James, Richard here, I'm home and I'm fine and then he listens to James and in what seems to be the right places says yes, yes, yes. James asks him to pass the phone back to me, and he does. Dawn and I are in tears, this is a piece of near normal family behaviour and it feels marvellous.

I have installed one of those baby-monitoring devices just above Richard’s bed, and the receiving end of it is clamped on to our bed head, I am amazed at its sensitivity, I can hear every breath that Richard takes and I find this reassuring. Dawn tells him about the monitor, she tells him that if he wants anything he has only to give a little shout and we will come down to him. As has happened from time to time whilst in hospital, his penis has become sore and he is not able to wear his urinary sheath. Inevitably during the night his bedding has become wet, we’ve anticipated this and have bought many sets of sheets, and also a tumble drier, so we are able to cope with all the extra laundry.

The ward manager has arranged for Richard’s daily anti-blood-clotting injection to be given by our local district nurse, and so on Saturday morning halfway through giving him his bed bath the nurse arrives. The injection is into his stomach and it stings, although he has put weight on he is still thin and it occurs to me that the sooner he puts a little more weight on the better from the point of view of having to have these injections.

James and my mother come to visit, although she has recovered from her colostomy operation it is clear that it has taken its toll, and she detests having to wear a colostomy bag. She has brought with her a huge helping of lamb roast, which is Richard’s favourite meal. In keeping with my mother’s idea of what constitutes a good meal, the meat is exceedingly fatty, the vegetables have been boiled for at least an hour, and the gravy is thick enough to support a knife and fork, and Richard loves every mouthful. It is by far and away the most food that Richard has eaten at a single sitting since his accident, and it is a pleasure to watch him enjoy every mouthful. With a knowing wink my mother says, see, I know what he likes.

Sunday the 23rd of July. He has had a good night’s sleep, and given the circumstances so have we. It’s a warm and pleasant day and so we go for a walk, not too far, just far enough to get some fresh air into our lungs. When we get home we decide that we will go into the garden, and Dawn gives Richard a haircut and I take his photograph. I assume that Richard will not know what I am doing, but to my surprise as I put the camera to my eye he lifts a hand and gives me a slight smile, he knows I’m taking his photograph. During the evening we watch a video, which Dawn tells me is a favourite of Richards, she tells me that on one of his visits, he sat her down on the couch, made her a cup of tea, and together they watched the Lion King. It surprises me that he has the slightest interest in something that is little other than a sentimental cartoon, I wouldn’t have thought he would have given it the time of day. Do I really know my son as well as I thought I did, do any of us really know our children that well. It is not my kind of film but it is undeniably a very pleasant family thing to do, and to be able to do it as a family with Richard is more than I would have dared hope for just a few months ago.

Monday the 24th of July and Richard is to go back to rehab this morning in time to have his lunch at the hospital. There is a certain pattern that is going to establish itself during these weekends at home, Richard is very prone to vomiting, especially in the hour following his antiseizure medication, also we are to find that he has occasional night-time seizures. These are not the full seizures that he has had before, but nonetheless we find them frightening, not for what they are but for what they might become. The seizures affect mainly his face, his head turns to the right and his facial muscles twitch violently, his mouth is pulled down at the right hand side and he drools from that corner of his mouth. His breathing has a short staccato pant about it, his lips tinge blue, and his pulse rate increases markedly. This state will hold for from two to five minutes, then the facial twitching stops and the corner of the mouth is less pulled, the blueness fades from the lips and the breathing becomes more normal. Finally the pulse returns to near normal and then the drooling stops.

We of course report this to the rehab doctor, she makes no mention of it happening before, and I come to the conclusion that Richard has probably had many of these night-time mini seizures and that they have gone unnoticed. Unless the night staff happened to go close up to Richard’s bed during one of the seizures it could be missed. His head turns to the right a little, which is away from the door into his side ward, and so anybody standing in that doorway and taking a quick look at the four patients in the semidarkness would simply not see that my son was in distress.

Wednesday the 2nd of August. Richard is having an occupational therapy session, which on this occasion consists of learning how to use an electric wheelchair. He does not see us arrive, and I position myself in the corridor so that I can watch how he does, really he is doing quite well and then suddenly he sees me and immediately takes his hand off the control and comes to a halt and then looks away. Alright Richard, I say, and I walk away to his side ward. Immediately he resumes his drive, while he has his back toward me I hide myself in an alcove from where I can just see some of what he does. With some guidance he manages to turn his chair to face the opposite direction and then heads toward me at full speed, he goes past my hiding spot and does not see me, and then takes the 90° turn at the end of the corridor at full speed. I’m minded to think that his accident has taught him nothing about the dangers of speed, however I cannot help but grin. I wonder why it is that he refuses to use his electric chair when he knows that I am watching him.

Friday the 11th of August. A disappointment this afternoon, for Richard is not to come home this weekend, he has had two small seizures and sensibly the decision is taken that it will be better for Richard to stay at the hospital where he can be more closely monitored. These two small seizures have followed a 10-day period in which Richard has vomited more than he usually does and this combined with the seizures is causing a little concern.

 

Sons in Two Hospitals

 

Monday the 21st of August. The other three patients in Richard’s Bay seem to have caught whatever it is that Richard has had, for now they are all vomiting, and it is decided to quarantine the bay, this means that whenever a nurse or doctor come into the bay they have to gown and glove first. We however are excused from this chore, but I decide to gown up because today Michael is going to have his pleurectomy operation, and I shall be oscillating between this hospital and Wythenshawe hospital in South Manchester, and should therefore be careful not to carry infection from this hospital to that. The journey between the two takes an hour, and Dawn tells me that Richard seems to resent my absence, I explain to him what is happening to his younger brother, and that all we need is for James to get sick and we shall have a full house. Michael comes through his operation well and should be home within a few days, but will need a couple of weeks rest and recuperation.

I have started to realise that returning to work is just not an option for me, my doctor is now signing me off work a month at a time, and I feel that I should have a talk to my manager. My thoughts have been focused on the possibility of early retirement by a letter sent by my company to all its employees. Basically it wants to downsize and is looking for people to volunteer for redundancy, as of yet I have not made any inquiries as to what the redundancy package would be. There are several issues to cover with my manager, he has been very good and not taken my company car from me, but now this has to go and I thank him for leaving it with me for so long. He tells me that the deadline for accepting the redundancy package has passed, but that the take-up was so poor that it is likely an enhanced offer will be made, I thank him for the information. He then goes on to tell me that there is an alternative to early retirement for me to think about. His wife had suffered a stroke some years back, and the outlook had been as bleak for her as it had been for Richard, she too survived and eventually came home but needed round-the-clock care. He had had to make the decision as to whether he should provide that round-the-clock care himself, or have people coming in so that he could carry on at work. His decision was to carry on working, and he had not regretted making that decision. As he talked to me I remembered just how empathetic he had been that morning back in November when I phoned him and told him of what had happened to Richard. He knew what I was going through, for he had been through it himself, and now he was giving me the benefit of his experience, and I very much appreciated his wise counsel. Two weeks later an improved offer was made and I accepted the offer, and so my date for officially leaving work was set for January 2001, and in the meantime I was to remain on sick leave. It was a very strange feeling knowing that I had already worked my final day and that now my work was to be of a very different nature, and I also realised how lucky I was that my firms wish to downsize had come just at this particular time.

Another strange feeling was that of being car-less, but fortunately we live within a quarter of a mile of a railway station, and Fazakerley hospital also lies within quarter of a mile of a railway station, and so our means of transport to and from the hospital was not in any doubt. James insisted on buying a car for us, he said he felt he wanted to do something for Richard but didn’t know what and that getting a car for us would make him feel that he was doing something to help. Thanks son, it certainly did.

There is a petrol shortage caused by industrial action, an unusual sort of industrial action, it takes the form of picketing outside oil refineries, the picketing being a protest against the government’s intention to increase fuel duty above and beyond the level of inflation to fund its spending plans. This coupled with a worldwide rise in the price of crude oil has seen the price of petrol spiral over the past few months. This has been of little concern to us in our small world centred as it is in the Fazakerley Younger Persons Rehabilitation unit, but now it affects us directly because Dial-a-ride cannot provide the taxi service home for Richard this coming Friday and so we make alternative plans. We carry out a logistical check and yes, our plan is plausible, we will bring Richard home on the train, or more accurately on three trains.

Friday the 15th of September. Dawn and I feel like intrepid explorers as we push Richard out through the doors of the rehabilitation unit on our way to the train station, I think that some of the staff are quite surprised at our determination to get Richard home by hook or by crook during this period of petrol shortage. We walk to Fazakerley Station, the platform itself is set well below street level but fortunately there is a ramp and so this is no problem for us. We have been advised to go one-stop further into Liverpool and get off at Sandhills station rather than at Kirkdale, this is because we can change trains here from the same platform thus avoiding the stairs only access at Kirkdale. This we do and 40 minutes after leaving Fazakerley we are in Ormskirk where we take our third train, the step up from the platform into the carriage is enormous, I never noticed this before but then I’ve never been pushing a wheelchair before. However the guard has a portable ramp and soon we are all safely ensconced in this little single carriage train that shuttles backwards and forwards between Ormskirk and Preston. The first station en route is Burscough Junction, triumphantly and with the help of the guard’s portable ramp we clamber from the train, we’ve made it, we’re home. Just what people made of us on our journey I can only guess, the two of us utterly absorbed by Richard, and Richard so clearly a young man with many difficulties, it would be interesting to know what went through the minds of the passengers that were with us on our journey.

Richard’s weekends at home have by now been extended to include Mondays, Dial-a-ride however fail to turn up on Tuesday, the petrol embargo has ceased but an administrative error sees to it that Richard is to spend another day at home. Really we are pleased about this and it means that his only full day at the rehab hospital this week is to be Thursday.

 

An End in Sight

 

On our return to the hospital we are given two pieces of good news, firstly Richard is to be discharged from hospital on the 20th of October, and so our son after spending five months in this rehabilitation hospital, and 11 months all told in hospital is coming home to us on a permanent basis. Secondly it has been arranged that when he does come home he will receive visits from an Acquired Brain Injury Team, this is a service that is very much in its infancy, a lot of authorities have not as yet set up such a service within their communities, but we are lucky for West Lancashire have recently bought into the service provided by Preston and South Ribble, and so Richard will continue to receive physiotherapy, occupational therapy, and speech and language therapy on a regular basis. This is a great relief to me, for one of my major worries was that Richard would stagnate once he was at home, now I can confidently look forward to Richard’s continued improvement even when away from the hospital environment, indeed his improvement may even accelerate when at home. However a second worry of mine regarding Richard’s coming home, as I’ve mentioned before, is that our home had never actually been his home, I had met, courted and married Dawn during the period in which Richard was away doing his A-levels and university degree. Although he had of course spent time with us at Dawn’s home it had never actually been his, and it concerns me that for him this may not really be like coming home. I had discussed my concern with the staff at the hospital, and it had been decided that Richard should be given a choice, he could make his own mind up as to whether he came home to us, or alternatively moved into a nursing home. A funny sort of choice I know, but at least it meant that he was determining his own future, and it’s important for people with this sort of injury to feel that they are able to exercise some degree of control in their lives. Now this might seem like a clear-cut choice with only one outcome, but I know just how fiercely independent Richard is, and I felt that there was a very real risk that he might choose the nursing home option. I need not have worried, the staff at the hospital told us that Richard took no time at all in making his decision, on the 20th of October 2000 he will be coming home with us.

Monday the 2nd of October. We have got used to travelling to and from the hospital by train, indeed it has made a pleasant change and has induced feelings of nostalgia in me. In my mid-and late teens before I had a car, I travelled into Liverpool by train daily to work, and now many years later I am travelling on the train into Liverpool again but for wholly different reasons. I’ve had time to reflect on my life and on the mistakes that I have made, my first marriage was probably the biggest mistake of all, for when I look at the wife that I have now I know that it’s her that I should have spent my adult life with, and yet had that been the case I would not have the children that I now have, and I just cannot conceive of my life without my three sons, so nearly just two, but Richard has survived and we are going to look after him, I am taking early retirement to look after him. Maybe it is not what I had planned to do with my retirement, but can there be a better way for me to spend my time other than by looking after my son, a son who came so close to being taken from me.

James has bought us a car, in fact he bought it a couple of weeks ago but has been working on it to bring it up to scratch, and hopefully to make it reliable for us and for Richard. It’s a Cavalier, and I find it a very comfortable car to drive, he will not take any money for it and although I understand his reasons I feel uncomfortable. He and his partner Janet have only recently moved into their new house and he has enough things to spend his money on but I understand how he feels and am very grateful to be given a car at a time when our own finances for the immediate future are far from clear.

Tuesday the third of October. Richard is not going back to rehab until tomorrow, and James and I are on our way to Accrington in my newly acquired car. We are going to a small factory in Accrington that specialises in fitting seats for the disabled into cars. It is a wonderful device and replaces the front passenger seat; it turns through 90° to face outward and then slides out to overhang the sill of the car by about a foot. In this position we can transfer Richard from his wheelchair using a banana board onto the seat of the car, slide the seat back into the car and then rotate it to face front. It’s an ingenious device and is mechanically sound. Engineering quality and excellence doesn’t come cheap, the cost is £650.00. Andrew, Richard’s business partner, who was with him in the car on that terrible night last November has very kindly offered to pay half the cost, and a few days later his cheque turns up in the post. Thank you Andrew.

 

Two Nice Touches

 

Shortly before Richard left Ormskirk hospital one of the staff nurses on Ward A told Richard and ourselves that she was going to be married in the late summer and that she would like Richard to come to the reception. We were touched by this, it was a lovely gesture to have made, but to be honest during the intervening months we had forgotten about it. And so were surprised and delighted to receive a phone call from Staff Nurse Angela reminding us of her invitation and telling us that she was to be married on Saturday the 7th of October, and Richard was invited to the reception to be held that evening. How lovely of her to have remembered Richard so much further on, and I think it indicative of the sincerity and warmth of the staff that we came to know in our four months at Ormskirk General Hospital, may God bless them all.

Saturday the 7th of October, and we are preparing Richard for his special evening. Dawn has pressed his Armani suit and his Charles Tyrwhitt shirt and he looks really special, but the further on we get with these preparations the flatter Richard’s mood becomes, he seems to be becoming unwell, and then it dawns on us that all this fuss might be too much for him, a case of too much too soon. And so we ask him would he rather stay at home, and his answer with a downward cast of the eyes is yes. In all honesty I think that it has probably been too much for us as well, we have been at the brink of something awful for so long that now what we all need is a gentle re-entry into the ordinariness of everyday life. To put it quite simply we are all still too raw and bruised to be able to take on even the pleasant prospect and challenge of a wedding reception. I take Richard’s present to the wedding reception, nurse Angela fully understands the situation and says that it is just so nice to know that Richard is as well as he is, and to please give him her love.

Two hours later Richard is to have one of his night-time seizures. Had he sensed this coming, and was it perhaps why he didn’t feel up to the reception, or was it that we forced the pace a bit too much and unwittingly brought on his seizure. Either way there are lessons to be learned and we must take life at a very gentle pace for a long while to come.

Tuesday the 10th of October. We are heading back to the rehab unit in the car, having thanked Dial-a-ride for their services, we shall of course remain on their books and pay our subscription as theirs is an excellent service. Just before pulling into the hospital Richard is sick, we are completely unprepared for this and so there is quite a mess to clean up. This is to be a problem for Richard in the future, he is to find it very difficult travelling in the car, and more often than not will vomit after 20 minutes or so on the move.

Over the past months, student nurse Marie has continued her patient work with Richard and has clearly established a rapport with him, now there is no talk of any need for antidepressants, this notion seems to have gently faded away, and I have no doubt that Marie’s befriending of Richard is the reason for his steadily improving mood. She comes every day in her own time and talks to Richard or plays games with him, he confides in her, and her integrity is such that we do not ask her to tell us what Richard has said, for we know she would not do so. I realise that when Richard comes home he will miss her very much, and I wonder if there’s any possibility that she might be able to come to our home and keep up her contact with Richard. And so on Marie’s next visit I tentatively broach the subject to her, I am only halfway through my sentence when she smiles and nods, she has already thought about this and was going to ask me if she could come and visit Richard when he was back at home. What a lovely girl, I am delighted that her contact with Richard is not to be broken, he has gained so much from it, for he has gained a very special friend.

We have had our final family meeting with the medical staff of the rehab unit. Dr Mallard restated that she felt Richard would improve considerably over the coming two years, and that she looked forward to seeing him again in her outpatient clinic. I gave my thanks to the staff for what they had done on Richard’s behalf, and for what they had done in preparing us for our chosen task of looking after him. Also I thanked them for arranging the smooth handover of the professional services that Richard would now be receiving from the Acquired Brain Injury Team, and told them of just how relieved I felt that this professional service was available to him. And then I thanked them for initiating proceedings with West Lancashire District Council, and was able to tell them that all was going smoothly and that hopefully some time in the late spring or early summer of 2001 building work should start, and that eight weeks after that Richard’s bathroom extension should be completed. I wondered if there was any possibility that Richard might be allowed to return to the rehab unit for a week or two during the worst of the building work. In retrospect perhaps that was an inappropriate question for me to have asked, the senior nurse’s reaction was immediate and sharp, she said that this was not a hotel and that I couldn’t expect Richard to be put up just because things at home were difficult. Dr Mallard’s more elastic mind came to the rescue; her feeling was that as this was going to be some months into the future, then it would present a good opportunity for a reassessment of Richard. I couldn’t help but smile, Dr Mallard had made no promises but at the same time had put the senior nurse firmly in her place.

 

Home for Good

 

Friday the 20th of October 2000. Today is a very special day, for this afternoon we shall be taking Richard home, not just for the weekend, not even for an elongated weekend, but quite probably for the rest of his life. It is 11 months since his accident, and in that time I have come to realise, perhaps even to accept, at least in part, that Richard will never be the same again. Dawn and I have read books written by other people who have gone through, who are perhaps still going through what we are now going through. And I have learned that not only is the road to recovery from traumatic brain injury a long and hard one, but that it is also an incomplete one. There will be a return to a sort of normality, but not the normality that existed prior to his accident; Richard’s life has changed out of all recognition, and ours with it. He has gone from being a fiercely independent, extremely intelligent, sharp and at times abrasive individual, to one who will have to be looked after (very probably) for the rest of his life, he is profoundly both intellectually and physically disabled. But he is still my son, he is still Richard Paul Cook, I loved him before, and now I love him even more. It is as if he has been rendered a child once again, a child that in all probability will never grow up. May it be that one-day Richard will read these words for himself, smile and say, that is something else you got wrong dad.

But for now we take down the posters from around his bed, we pack his clothes and small belongings into a case, and I load his portable TV and mini hi-fi system into the car, and then we say our sad farewells to the mothers of Matthew and Daniel, their roads are going to be just as difficult as ours, perhaps more so. We also say farewell to the staff of the Younger Rehabilitation Unit, and then carefully we put Richard on to his special seat in the car, slide it in and turn it to face front. As we drive out of the hospital grounds on this final occasion I glance around at the many buildings roadways and paths that go to make up Fazakerley hospital, and I realise that it has taken up a very significant place in my life and I shall not forget it.

Now we are back at home and Richard is tucking into a huge fry-up followed by a slice of cake. James and Janet come to welcome him home and Michael brings a bottle of champagne and we drink a toast to the future.