It has been a strange and still uncertain life for me of late. The constant uncertainty over which town Ladan is going to be based in has kept me from settling in terms of accommodation and work, I am currently staying with Kamran, Katrina and Neil Ferdowsian in the small town of Perkinsville near Chester-le-Street which is 17 miles from Peterlee, they have made me very welcome and have been an enormous help to me at this moment in my life, their daughter Layla Ferdowsian is on a “year of service” at the Bosch Baha’i school in California so they have been able to offer me her room for a while. I don’t usually write about me but so strange are the happenings of late that they probably make quite interesting reading.
The hardest thing about being a very supportive relative in this situation is the resistance that I meet from some of the staff that are involved in Ladan’s care. Many are fine with it and understand it but others are quite resistant to a relative wanting to be there so much. It is certainly uncommon where we are for a family member to be with a patient for a considerable chunk of every day, most people here are left by them self but for a couple of hours every two or three days, or less.
Aside from wanting to see how Ladan is and pray for her my reasons for wanting to be with Ladan so much to keep her calm and settled have already been outlined above, so it was a matter of considerable stress for me when out of the blue the rehab staff came to me and said that they were concerned that I was overstimulating Ladan and that they were drawing up a programme that would ensure she got enough rest throughout the day. Reading between the lines you can tell that communication between some of the rehab team and the family who know their client best is seriously inadequate, or else they would have been aware that the proposal that family spend less time by Ladan’s side and the desire that Ladan get high quality rest were at odds with each other. Furthermore the suggestion that as a family we might be overstimulating Ladan was indicative of the unfortunate lack of willingness to work with the family or even show an interest in what we did with Ladan over a full 5 months during which we had been frequently requesting more cooperation.
I have two thoughts on where this misconception of over stimulation may have arisen from, though both are speculative. In the North-East there are very few facilities for comatose patients which are not based on open wards, so it is normal that visiting times are times during which there is a lot of talking, playing music, watching tv etc. and that therefore visiting time is synonymous with stimulation for the patients, therefore the general noise and light that is constantly present in the hospital environment is only removed when a therapist takes the patient to a quieter environment. The leading rehabilitation staff at the Hawthorns come from a facility where patients are all on an open ward and therefore their perception of how relatives contribute to patient care may well have been drawn from that experience.
Without consulting me they had drawn up a programme that was intended to reduce family visiting hours to 4.5 hours a day, 2 hours at noon and 2 hours at 5pm, and half an hour at 9.30pm. When the programme was presented to me I was told that these were periods during which Ladan could receive stimulation and that all other periods she should be given quality rest, as the stimulation periods were so much longer than I could perceive us ever wanting Ladan to receive stimulation for in her current condition I was fully supportive of the programme but I had something of an argument on my hands to point out that Ladan should not be left alone during the rest periods, for I feared she would become agitated and not rest as per my comments above. Whilst my views were accepted at that time I somehow knew that I was going to face the same attitude at a meeting a few days later. Also, following on from many of our own failed attempts to have a common programme of activity for Ladan I had recently decided to introduce a white board to the room on which I recorded how much stimulation Ladan received in each of a number of categories so that when I went to do an activity with Ladan throughout the day I could choose one that worked on different areas from the previous ones in the same day, for example Ladan’s mother and Grandmother would often come in and put on one of Ladan’s favourite persian dance cassettes, switch on the disco light ball we have, move Ladan’s arms around in time to the music and talk about her favourite things for about 15 minutes, so on those occasions I would write 15 minutes next to the categories “Persian”, “Exercise”, “Visual”, Favourite Music” and “Memory”, later I might choose to put The Weakest Link on for 10 minutes which would be 10 minutes in “Quizical” and 10 minutes in “Television”, perhaps people they were looking at that chart and adding 5×15 and 2×10 to assume 1 hour 35 minutes of stimulation instead of 25 minutes. As I say, I can only speculate. I am sure that nobody had a clue how insulting it was that a team who hadn’t even previously enquired as to how we thought Ladan was doing in the course of the five previous months suggested, with no knowledge of our activities and observations, that any time we were spending with Ladan was over stimulation her.
As it happens we have had a serious interest in minimizing stimulation for a long time, Ladan’s father, Bizhan, was hearing many reports in Australia of patients coming out of comatose states as a result of complete sensory deprivation, ie. being placed in rooms where all sound and light was absent, he had requested that we emulate this while we were at the General Hospital but it was impossible to minimize light or sound by that much with the curtains and door. At the Hawthorns it is slightly quieter and can be made a little darker at night for a while but still as I sit and type this by Ladan’s side with the doors closed I can hear the care staff chatting at their station, singing a little and laughing. I have been looking forward to the time we are in a home environment and we might be able to completely black out windows and sound proof a room for Ladan to see how she responds to it. That said, in any environment where there is background stimulation there is the benefit of positive stimulation to be taken into account. For example, if the ward is noisy here and Ladan is not falling asleep but looks tired, when I put on some soothing music she will get to sleep. Obviously if somebody is cold that is a stimulation that can bother them, placing an extra blanket on top of them and warming them up is a stimulation that again calms them down, so I think it is more about keeping the sensory environment as neutral and static as possible rather than actually withholding all forms of stimulation. One of the “exercises” that was on the whiteboard is having some sound-cancelling headphones on which electronically remove sounds below a certain frequency.
Nobody was denying that the suggestion of over stimulation and the idea that Ladan might rest better was based on speculation and not on anything they had witnessed, yet my concern that their proposals would cause Ladan serious distress and possibly, in the longer term, real harm were never addressed. In essence the argument was that the potential for Ladan becoming agitated by sensing the presence of a member of the family in the room with her, while this was contrary to the observations expressed by the family, outweighed the obvious advantages of having a family member present during her rest periods in terms of minimizing sensory stimulation and tackling any agitation that may occur from other causes during that period. I spent a fortune on my mobile phone speaking to many people who might be able to offer a better explanation for this than the staff at the Hawthorns had, several of those I spoke to have experience of care for the comatose, nobody could understand this view, in fact that is a serious understatement, several people were so shocked by this suggestion that I had to reassure many people that in every respect relevant to Ladan’s day to day care these people were extremely competent. In order that I may have a safety net to save Ladan from this plan I contacted a few other facilities, mainly in the south-east of England, enquiring after available rooms, obviously I made my concerns clear as I would not want to move and face the same problems and the regional coordinator for a large number of homes specializing in neuro-rehabilitation in south east England told me it was their experience that family members have a settling influence on even the most comatose of their patients.
While I was worrying about all this a rather peculiar incident occurred while walking back from the town centre in Peterlee to the neuro-rehab centre Ladan is in, I had just got myself some cheap comfort food in the form of a chicken burger and chips and was walking back when a youth started walking the same way, I didn’t think much of it at the time, in fact he had some features in common with a friend of mine which reassured me that I shouldn’t think of him as being dodgy. Anyway, as we got out of the centre of the town I was initially about 20 metres ahead of him a a less well-lit area with nobody else around and I noticed his shadow rapidly getting closer, then he hit me in the side of the head knocking me into the road, he ran off into some trees opposite the road. I got up and picked up what I could find of my broken glasses and shouted after the guy asking why he had done it, he didn’t reply. As I continued along the path he came out from the trees so I stepped in to a driveway and knocked on a door, he went back into the trees and shouted something like “don’t call the police”, a couple of ladies then came along and asked what was going on, they walked with me down to the entrance to the hospital car park, at that point the youth came out again running after me and I ran into the hospital – this is a hospital next to the rehab centre Ladan is in – there was some bleeding around my eye and so I asked them to take a look at it, the security guard described somebody acting suspiciously outside the entrance and called the police with my consent, the police came and took the guy away for questioning, I spent much of the rest of the night giving statements and getting my eye checked in the A&E department of another hospital as the one in Peterlee was too small, it is okay mind, my glasses damaged the surface layers of my eye so I needed to take some antibiotics for a while, and I still have some scarring and tenderness around that eye. For a little while between being in the small local hospital and going to give statement and get a fuller check-up I was sat in with Ladan and enjoying a little of the affectionate care from the nurses that Ladan is subject to every day, which was touching. I had to do a video based identity parade, 9 faces looking forward then right then left, I was worried this would be tricky as I had mainly seen him in the dark and from the side, but as soon as a particular face appeared I had a strong feeling he was the one, the man is denying it so I’ll probably have to go to court soon. What was funny about the process was that on or two of the people seemed to be acting the part, one of them in particular was doing some heavy breathing as if he was nervous about being on camera, but he didn’t hold the appearance while turning his head, so I was sure he was fancying himself as an actor!
So after several weeks of stressful worry that on the basis of speculation and as a result of the poor communication, which had been troubling us since we moved to the Hawthorns but had never threatened to cause Ladan any potential problems, Ladan was to be robbed of having such a good level of family support if she remained at the Hawthorns I managed to get agreement in support of family being allowed to remain in Ladan’s room during her rest periods in order to ensure the kind of proper rest proposed in Ladan’s new structured programme. Somebody who hadn’t been involved in Ladan’s care suggested it be noted that my views were contrary to their “professional” opinion – an opinion they could still not offer a more objective basis for – and so it has apparently recorded in Ladan’s medical notes that I have acted against professional opinion! There is a little grin that comes to my face that this man who somehow even managed to be called an “angel” in the best man’s speech at our wedding would stand up and fight against medical professionals to do what is best for his wife… but I probably listened to more professional opinions than the unfounded one that I felt I had to argue against, so its just a fantasy image of being a rebel for Ladan that I am smirking at.
Perhaps it sounds like I get to stressed and worked up over things. Actually on this occasion the responses of everybody I spoke to suggested that I did not over-react, even before I had been consulted at all about the new programme and there was talk of it being put into place before I was shown it I phoned Ladan’s case manager and asked for guidance on how I should be reacting to this, he stepped in and asked the Hawthorns not to start the programme until it had been discussed by everybody, agreeing that it was only proper that it should be.
If I am to be very personal one of the greatest psychological strains is that this scenario has taken me away from my traditional comforts and from being within reach of my friends. I am, for the most part, very good at handling life by myself, I don’t get bored easily, I can focus beyond depression and see a positive side to almost any scenario, but when something really hammers me into the ground the telephone is no substitute for the smiles and hugs of the people who know you and love you. You forget how well even your most casual of acquaintances know you until you are faced with situations where nobody around you does and you could do with one of those comforting scenarios where half the things you would like to say don’t need to be put into words, they are silently heard and understood by your friends from the way you are and the things they know about you. On a day to day basis I can manage without it, and for the most part I can handle the upsets that have occurred in Ladan’s condition and some of the comments and obstacles that people occasionally place in my path in my support for Ladan. Along with the bigger obstacles the hardest things to deal with are all the things I should do which require retelling the story of the 4th November 2004 in reasonable detail. In any scenario where I have to re-tell the events of that day, see in my mind again Ladan’s beautiful smile as she looked at me and commented on the headphones not working in the MRI scanner just before losing consciousness, that deprives me of all strength.
My mother is hoping to come back from Zambia soon and move into the North East, and from time to time friends and other family do manage to visit. Also Ladan’s family here are all good at making me feel welcome and comfortable, though they had not had the chance to know me well enough before this scenario was upon us to offer the same depth of emotional support as my friends can, but all of this is an excellent source of help and strength for me and just as everybody has their tests this is all part of my test. Indeed, I am lucky to have so many wonderful friends that I am so aware of their absence in this time when I am far away from them.
Work-wise I have had a little work come my way from Ladan’s very kind uncles who have their own businesses but as I have been wanting ideally to set up Internet access from Ladan’s room and work from her side, we explored the idea of adding wireless functionality to the existing Internet connection at the care home but since that was for staff only it was not thought to be appropiate. Initially people were telling me that I was mad to consider investing hundreds of pounds in establishing an Internet connection form Ladan’s side when we may be moving on within six weeks, this was a valid perspective but I have spent more than a year not knowing where Ladan will be from one month to the next while in reality she had only moved once, I was started to feel it was time for me to stop waiting for others to make decisions and try to do something to get my life in gear a bit better. While the wireless option and other possibilities were being considered by the IT department of the Hawthorns rehab centre I got some news from Ladan’s case manaher from the Primary Care Trust (then David Shell, an excellent case manager, who has since moved back to Northumberland from North Tyneside), the news was thar some experts who know Ladan’s case had met and decided that Ladan should remain at the Hawthorns in Peterlee until a new development was complete in Newcastle in January 2007, this new development would be an expanded version of the existing Hunters Moore hospital which it was felt was unsuitable for Ladan as it has no single rooms.
This news meant that for the first time since events took such a tragic turn on November 4th 2004 I had an idea what was happening for the next ten months. On the one hand it was slightly concerning as my desire to ensure Ladan always has family by her side means, so long as Ladan is in Peterlee, that it falls to me to be near her as much as I can, as Ladan’s mother cannot make mornings and does not like driving at night and staying 17 miles away means that other family members visiting in the middle of the day does not offer me an opportunity to go and put my feet up anywhere outside the care home. In Newcastle at least family would have been able to visit Ladan at times of day that offered me the chance to go and have a rest without Ladan losing the benefit of family company. I was also disappointed because the plan did not involve Ladan being back in a home environment until 2007, something which I am keen to occur as I feel I can build a working from home life-style around her easily and offer her more of my time and support in the process. Nonetheless, the prospect another 10 months of spending much of the day every day in a place where the doctors and rehab staff are not very good at communicating with family members was a downer significantly outweighed by the relief of knowing I could finally try to set up some sort of a life around these circumstances. I sought confirmation on what I could do to get Internet access – which was going to be a 1 year minimum contract and require installation of a phone line so would be a commitment of 300 pounds, and also started looking onto local accommodation options. I was ready to roll with this new life, feeling things could only get better in terms of the stress that the staff had been putting me through personally at the Hawthorns, when one morning I got asked to go into an office and was asked how I was…
I’ll rewind about 15 months from this point momentarily. Some time ago Ladan’s Uncle Shahram gave me a Personal Digital Assistant, a Sony Clie PEG-UX50, a really smart electronic personal organiser that can take pictures, record video, sound, surf the web, do email, contain electronic versions of books, and much much more, it has been by my side almost every day and night with exception of a few times where I have left it in the place I am staying or in the hospital or care home that Ladan is in, two nights before I was asked into the office was one of these nights that I went to bed and realised that by PDA wasn’t by my side and that I must have left it at the Hawthorns somewhere, I didn’t think anything of it, it often happened. The following evening it was returned to me and they mentioned that it was found in the morning underneath a flannel and had appeared to be switched on. As the device has an auto-off within 3 minutes, unless in active use, I did not think much about what they said to me until a short while later it suddenly occurred to me that if a flannel had been placed on top of the PDA and it was found switched on then somebody must have pressed down on top of the flannel in such a way as to press the voice memo button on the outside of the device, which would mean that they had recorded themselves in the room with Ladan. I had a look and indeed there was a 40 minute recording from that morning (40 minutes would have been a limit imposed by memory or battery restrictions, both of which are very limited), I listened to enough of it to recognise that it was what I suspected it was and then went and told the nurse on duty what must had happened, I also told the nurse on duty that night, who had recorded herself, what had happened, reassuring her, should there be any doubt, that it was not something I had done myself nor was it possible for the PDA to be set to record a conversation at a future time.
So, I figured that I had seen a potential suspicion arising and had nipped it in the bud, but I was wrong. Asked, in the office, how I was, I replied that I was okay and then faced several questions over whether it was “okay” to deliberately leave a device in Ladan’s room to record conversations! When I pointed out that this had not happened and tried to demonstrate what had happened I was repeatedly accused of lying and told that I did not trust the nurses, a big deal was made of the fact that a flannel had somehow found its way on top of the PDA, which was apparantly on a table next to the sink, as if that could only occur in a dimly lit room through some deliberate act of deception and I repeated numerous times that it wasn’t even possible to do what they were accusing me of with my PDA, since it cannot be set to record at a future time, has no voice activation facility and was not able to still be recording in the morning had I left it recording on departure the previous night. Eventually my accusers stopped accusing and I also had a chance to point out that the suggestion I didn’t trust the nurses in whose care I had left Ladan for the last six months couldn’t be further from the truth, but the facts that the staff could believe that I didn’t trust them and that they clearly didn’t trust me after having been there was very concerning, not anywhere near as stressful as the thought of being forced to leave Ladan to suffer by herself in the name of “rest” had been, but all hope that communication might be improving at the Hawthorns were shattered in an instant.
Actually it can’t be entirely true that I am not trusted as I am generally left with responsibilty to give Ladan her medication, including some that it is known I would personally prefer her not to be on, some friends have suggested that there is just a culture of suspicion among nursing staff, others suspet that there is something that they were trying to hide that made them so worried, I don’t subscribe to that view. Anyway,I decided to put installation of my Internet access life-line on hold while I awaited a proper resolution and apology to that situation. The manager of the home, who is very good at communicating properly but is often away when her presence would be particularly useful, verbally apologised on behalf of her staff but acknowledged this was not enough and agreed to arrange a meeting between myself and some of the key staff to resolve the underlying problems that gave rise to that ridiculous allegation and the unprofessional way in which it was handled. As yet that meeting has not happened. A further irony to some of the problems that we have at the Hawthorns is that the “key worker” who is supposed to be the one the family can turn to with their concerns is someone who, rather than coming to us and investigating unfounded suspicions at the point where that is all they are, comes and presents me with the allegations, complaints and/or decisions that have been allowed to grow out of them.
A few days after this farce later Ladan’s case manager from the Primary Care Trust came and told us about the offer of a place at the Minories in Newcastle, he said that I looked very unhappy when he told me the news, it was undoubtedly a combination of the fact that I no longer had a plan for the next 10 months of my life when I finally thought I had one, and the thought of how much easier it might be if Ladan was in Newcastle and other family members could give me some break times. When the offer of a place in the Minories was made it was to be instead of having the choice of a bed at the new regional centre being built in Walkergate (part of Newcastle) which had been the original choice of somewhere for Ladan to move to after the Hawthorns. We were told that the Minories was being offered as an alternative to the plans proposed by the medical staff and was not what they had recommended. That made the decision quite a difficult one. We visited the Minories a couple of times and also visited the Clinical Lead of Hunters Moore in Newcastle, who will also be the clinical lead at the new Walkergate development, to find out what we would be missing out on, but when we met with her she assured us that even if we moved to the Minories the option of a bed at the new development would remain open. With that assurance, and having confirmed many things with the Minories, the location of the Minories makes it an ideal alternative to the Hawthorns, and so we are now just awaiting final assessments and approval and then I will know that not just for the next ten months but for the foreseeable future, or at least until Ladan makes a significant recovery, I will be focussing my life around the Newcastle area. So for the moment things have been placed on hold yet again, as they have been for so long now, but we seem close to a decision that will enable me to start settling somewhere at last.
Having related some of the more trying tests that the staff of the Hawthorns have put me through lately I must re-assure you that Ladan would not be there if I did not believe that they were among the most competent people that could be looking after Ladan. Communication is a major problem there, internally let alone with family, and because this has always been of stress to the family I have been asked several times if I was happy for Ladan to remain at the Hawthorns while longer term plans were made and I have always replied that I was.