Monthly Archives: November 2015
Today, 25th November 2015, marks what would have been mine and Steve’s 27th Wedding Anniversary.
I have blogged in here each year to mark our anniversary since Steve passed and it still seems like only yesterday that we were drinking bubbly with close family to celebrate our marriage. Even in the latter years, when Steve could no longer hold a champagne glass, I would get some in to celebrate and pour a bit in his beaker so that we could mark the day.
The previous blog entries for our anniversary can be seen below. No photos inserted this time as I have indulged myself again with a new slideshow which can be seen on the YouTube link at the end. I have also inserted a new poem at the end.
November 2011 – And the wisdom to know the difference…
November 2012 – Self indulgence
November 2013 – SILVER RINGS & SPARKLING THINGS
November 2014 – DEDICATION NOT MEDICATION
The job takes me to various hospitals and mental health units. My role is basically acting as a gofer between the on-site Mental Health Act Office and the Tribunal Panel. This involves making sure Panels have what they need to consider the evidence, and that the ‘witnesses’ are ushered accordingly. The words ‘herding’ and ‘cats’ come to mind at times but it is all relatively straightforward and I don’t have to make the big decisions thank god!
Although I am out of the room whilst the Panel are conducting their deliberations and forming their decision, a part of my job does involve sitting in and hearing the proceedings. Given some of the experiences I read about in the Huntington’s disease (HD) community, where the carer and/or family can become frustrated with the tribunal system, I was a bit apprehensive at first.
I was worried I might feel uncomfortable with some of the stories of patients when wondering if I could be coming across formally diagnosed HD cases. Or, perhaps worse, cases of undiagnosed patients that might make me wonder…
So far I have worked on over 50 tribunals and I have found the experience very interesting; rewarding; encouraging; and even reassuring. On the whole, the system in place truly puts the patient at the centre. A fine balancing act establishing what is in the best interests of the patient and their families, and also the community at large. It is certainly not just a box-ticking exercise so as to simply be seen to be upholding the judicial system.
It is not perfect by any means. I am sure my take on it would be different if not being from an impartial view. That is to say had I needed it when being Steve’s carer; or even if being a patient in my own right? However, seeing it from a distance as it were does give a whole new perspective.
I am pleased to see the Panels are not afraid to ask awkward questions on behalf of the patient to the representatives of the Trusts and other participants involved. This includes the social care representatives and other attending witnesses such as family and friends.
On that last point, as much as additional people can mean additional headaches for me from a logistics point of view, I have been surprised at how so few of the tribunals have had a ‘nearest relative’ or other family; friends; and advocates in attendance.
How sad that so many people do not have family and friends they can call on at such time to attend with them. Those who can add more context to the background and what may have lead to the crisis point leading to their being brought to hospital. Adding an insight into what support might, or more likely might not, have been/be in place or available to them in the past; present and in the future.
We are not necessarily talking about people without living family or friends. Sadly mental health issues can lead to fractious and fractured relationships which mean the patients distance themselves from their families and friends. By that same token, the families and friends may have distanced themselves from the patient. There is, after all, perhaps a point when people feel it is more detrimental to be there than not be there.
I will always be grateful that, although our relationship was strained at times and HD brings with it many challenges, I was able to work with Steve to keep the adverse psychological element of HD at a minimum. When I read about some HD cases it brings it home to me even more how lucky I was to have met such an amazing man!
Steve’s personality was sweet; loving; gentle; generous; his manners were impeccable and he was extremely tolerant. I never felt threatened by him in any way. He didn’t pose a risk to himself and he was certainly not a threat to others. There might be the odd kick or bash where the body flailed at times given the chorea aspects of the disease, but they were never intentional or done out of anger.
He was never a drug user or big drinker. He knew his limit and was a responsible drinker all the time I knew him, unlike me I should add. His money management was extremely good (his father had worked in a bank and instilled good practice); and he was not a big gambler. In essence, he was a true gentleman. The sort of man women dream of marrying!
It felt as if Mother Nature chose giving HD to Steve in order to test what would push him to the edge. She didn’t succeed though… Steve was always bigger than HD! Steve’s father was also a wonderful man and a true gent. Although he sadly gave his son a faulty gene, the other attributes Steve inherited from his father were truly a gift.
I’d like to think I helped to keep Steve away from the mental health roundabout that can be inclusive in the ticket for the HD ride. I have a naturally questioning mind and can also have a very cunning nature. Sometimes you have to box clever and medicine may not be the only way. For example, the time when Steve started seeing a ‘ghost’ in his bedroom.
Steve’s bed was facing a door to the hallway and he would point to the door saying that a man was there. Like anyone, at the beginning I tried to persuade him that there was nothing there and it was his imagination. It was clearly distressing Steve that he could see a ‘ghost’ and that I didn’t believe him/see it for myself.
After a while I said I could see the ‘ghost’ too and I would shoot him to make him go away. I would point my arm with a pretend (imaginary) gun at it and tell him the man is gone now. That worked but it was going to be another part of the night-time rituals which had to be gone through before we could settle, and obviously a disturbing development.
From observing and thinking about possible triggers it seemed that Steve was focused upon a certain part of the door frame where he would believe the ‘ghost’ was standing. Perhaps there was a shadow of something I could not see, or his mind was back-tracking to a bad memory thus bringing to the front a hallucination?
I decided to swap Steve’s bedroom around so that the bed would be facing the other side of the room. Instead of having any sight of a door or door frame there was a wall instead. I placed the wall clock straight ahead as it had previously been on the opposite wall so as not to confuse Steve too much. He needed his clock in sight as I have mentioned in a previous blog.
Without the focal reference point the ‘ghost’ seemed to be forgotten. I was so grateful that we didn’t have to go as far as seeking medical intervention. I felt we might be asking for trouble if going down the anti-psychotic route. Treating one problem and creating several more down the line…
For anyone who has read my book or any of my blogs, you may already be aware I have always been wary of the over use of medication in treating people. Medication preferably being a last resort rather than considered an automatic/ first resort.
I never did get a response to my request for help to ‘group’ the long list of meds and treatments that I had come across on the Huntington’s Disease Association Message Board. I listed the 46 I had come across so far in my blog One Dose of Tweetment or Two?
In the course of my job, it has been very interesting hearing more about alternative approaches to medication by way of talking therapies such as Cognitive Behavioural Therapy.
I am no stranger to therapy myself. I blogged about my experience in Counting the Cost of Caring & Sharing. I get the feeling that, had some of the people I come across in my work had access to private therapy, they too could have got through their own crisis points and hopefully got on with their lives as I managed to do for a long while after.
In using the term ‘private’ I’m not necessarily talking about private health vs National Health. I was able to dip in and out without the need to tell anyone about it at the time. That helped in terms of the stigma around seeking help for mental health issues which sadly still exists. In saying that… My own circumstances were a far cry from those whose mental illness is of a ‘nature’. That being inherent as part of an organic illness such as HD.
A Report titled Psychiatric and behavioural manifestations of Huntington’s disease written by Sameer Jauhar & Stuart Ritchie, which can be read HERE , provides a good insight into some of the complexities of dealing with HD patients in a psychiatric environment. It recognises the juxtaposition between displaying what could be termed as stability and non-stability. Under the section ‘Admission to hospital’ we read:
It is our clinical experience that the majority of hospital admissions during the predominant course of the illness are to psychiatric services. A small number of patients with the disease, usually those with a background of failure to cope, require admission because of severe psychiatric illness or a breakdown or refusal of community services. Treatment of the psychiatric illness is generally straightforward and placement in hospital provides a secure and structured environment, addressing many of the neuropsychiatric behaviours that may have precipitated admission. Cognitive deficits combined with neuropsychiatric symptoms often cause the greatest difficulties in behaviour, for example anergia, lack of initiative, blunted affect, egocentricity, constant demands, irritation and threatening behaviour. In-patient staff may make comments along the lines of ‘patient A shouldn’t be here’. This feeling may arise from an absence of a hard ‘psychiatric’ diagnosis, perhaps reflecting a common perception that patients with Huntington’s disease are not primarily ‘psychiatric’ in nature. There may be a failure to appreciate the organic aetiology of the behavioural disorder of the disease and the limited control the patient has over their symptoms. The patient may be labelled as ‘lazy’ or ‘demanding’, with subsequent alienation. In-patient staff often underestimates the importance of their role in providing a structured environment and the resultant benefits this has in containing the neuropsychiatric symptoms. The problem behaviours often resurface if discharge from hospital occurs without appropriately structured community services. Use of the Mental Health Act may be appropriate, and should follow the principles laid out in the legislation.
It’s a long paper, and there were lots of bits that struck me but I pulled out the bit above where they recognize misconceptions and the labelling of ‘lazy’ and ‘demanding’. I would be lying if I said that myself and others coping with those affected by HD didn’t go through stages of thinking along the lines of how much is HD and how much is manipulation? Again, I need to return to books like Hurry up and Wait by Jimmy Pollard to outline and remind me and others the nature of HD can be unreasonable in a world that looks for reason.
I am not sure if something like Avatar would work with the mind of someone with HD as communication is often compromised on so many levels. I imagine impatience would also complicate matters. That said… how amazing to be using computerised interaction to tap in to the psyche in such a way.
As for my own mental health…
My work takes me to various locations as I have said. That in itself has been a bit of an emotional assault course. Like the saying goes, “what doesn’t kill you, makes you stronger.”
The impact arises from visiting hospitals that are on the same sites Steve and I went to in order to see neurology and other services. And also from going back to places from the past where we used to live. Just as Jimmy Pollard cleverly explores in his book Hurry up and Wait under the subject of recognition being easier than recall, the brain seems to be stimulated more sharply when given visual representations rather than being asked to draw upon memory to visualise. Being confronted with visual reminders of the past can evoke such powerful memories and emotions within the context of grief Happy and sad emotions that hit you for six!
One of the sites I cover is Bethlem Royal Hospital in Beckenham. If Bethlem sounds similar to Bedlam that is because the term comes from it. It is ‘The oldest psychiatric hospital in the world, dating back to 1247′ and whilst it has not always been based in Beckenham (it moved there in 1930) it could so easily have been a port of call for Steve had things been different. Until 1988, when Steve moved to Clapham Junction in Battersea to live with me, his home was in Beckenham. At this point, I should highlight that Bethlem has changed over the years to become an award winning psychiatric hospital and is home to the fascinating Museum of the Mind.
Travelling to Bethlem from Greenwich involves taking a train to Lewisham. I then connect with the train which calls at Ladywell; Catford Bridge; Lower Sydenham; New Beckenham; Clock House; Elmers End and Eden Park. Eden Park is where I get off to take a short bus ride to the Hospital. Lower Sydenham was where I would get off when visiting Steve’s home. It is a short walk from Lower Sydenham to Steve’s old place.
I had not been to the Lower Sydenham Station for many years but it was and has been hard not to break my journey. To get off imagining he would still be there and I could step back in time. In a way I was glad I would need to get off further down the line where I had never had call to visit with Steve and therefore no associated memories.
Whilst waiting at the bus stop at Eden Park, I was taken by how well behaved and smart the school boys were who pass by. Smart maroon blazers; properly tied ties and shirts tucked in. Walking and not running. Talking to each other rather than shouting. A credit to their school from what I could see.
I am happy to be called a snob but I was thinking how refreshing that was in this day and age. I made a mental note to look up which school they might belong to. Imagine my surprise and delight but also heart wrenching pride when I found the name of the school next to the Station the boys attend was none other than Langley Park School for Boys. Langley Park was Steve’s old school!
It was another emotional bomb. It would never have occurred to me that Steve’s school was several train stops away from Lower Sydenham but the impeccable behaviour and manners that had struck me in the present students would have also been part of Steve’s upbringing and his personality. Yet another visual reminder of Steve. His past colliding with my present.
Looking at the latest Ofsted Report, Langley Park have been rated ‘Outstanding’. It was not just me being blindly nostalgic on Steve’s behalf. The Report shows it is Outstanding across the board of criteria. Having worked at Ofsted for a while back in 2013 covering admin for the Inspectors in the London Region , I have read quite a few Reports in passing. I have to say it was one of the best I have seen.
Steve would be extremely proud and I can’t help but wonder if Steve steered me towards the location. “Don’t feel depressed thinking of all the sadness of what Bethlem stands for in my home town. And also what might have been. Take comfort in knowing the area you now see has good memories for me of a more carefree life in my youth, and of what shaped me.”
Yes… I am aware of how strange that last bit sounds. Some would probably say I need to be on the ‘patient’ side of the table in tribunals. At least I am building up a list of solicitors specialising in mental health I suppose.
My latest poem for Steve is below. It touches on how much the psychological element of being a carer was more needed than any level of physical strength and we had to work together on that basis.
Underneath that is a link to my latest dabble in slideshow video.
The song I have used is by a band called Everything but the Girl and is called ‘Missing’. It played in my head as I sat on the train that first time I went to Bethlem and I had to stop myself from crying in public.
Update – Unfortunately, by using the music track, my video has been ‘blocked’.
I have therefore inserted the photos which were featured in the slideshow to the track below. Not quite the same obviously, but better than nothing I suppose. 😦
Some of the photos have not been used before. They are not the usual happy holiday ones. They are, in the main, just everyday ones taken at home. I am very sad now that I didn’t take more in our homes and annoyed with myself that I don’t have any of Steve from our time in Woolwich at Greens End. As it is I only have one photo from our time at Woolwich. In the lounge of our rented flat in the Vista Building. I have mixed feelings about that snap. The table is where Steve’s casket is placed on. It’s almost as if he is looking down on himself.
I have very few from our time in Erith which is where we spent most of our married life. I am grateful though that the only snap I have of us together in the Erith flat was taken when we were not posing (watching television from the looks of it). I smile now when seeing his arm naturally resting on me, and my arm naturally resting on his.
There are a few from our last home, in Greenwich. The quality of some of the snaps is very poor but they were often taken on my mobile phone which just happened to be at hand to catch a moment in time.
I guess I knew Steve’s time was running out the moment we moved to Greenwich. His HD had stepped up a pace and the only other home he would be likely to be moving to was a nursing home or hospice. I am so grateful we didn’t need to go down that route. I have no intention of ‘moving on’ in any way, shape or form. I am happy in my state of being and where I am physically and psychologically speaking.
TALKING TO STARS & STALKING AVATARS
I wasn’t trained to read your mind,
My guesswork intuition,
And all I know is loving you,
Was crucial to my mission.
Reconstruct distorted views,
Complexity of gaps filled in,
Using all the mental tools,
To build a shelf of hope,
On which to place our strategies,
And aim to help you cope.
Unscrewing all the guarded signs,
Allowing them to fall,
And catching hold before they crash,
Against the ground and wall.
If looking at the here and now,
And how things may have changed,
You’re still ingrained as part of me,
And how my life’s arranged.
In terms of my own sanity,
I’m not entirely sure,
Am I the one who stalks your ghost,
Or your ghost stalks me more?