Thursday, 30 September 2010

Looking up

Things seem to be looking up.

He's still not himself but my son is definitely getting over whatever is wrong.

Yesterday he got a letter regarding funding. He opens all his own post but if there's anything that needs sorting he passes it to me to deal with and he came to me with this one not sure what it was about. That in itself was verging on the positive as he hadn't just put it to one side but come out of his room to see me and I told him it was to do with the letter he'd given me a couple of weeks ago but he couldn't remember it. We were in my room at the time and so I got the first letter out for him and that's when I knew he was getting over his funk.

Now I'm not the tidiest of people but I know where things are so when I had to get the letter out I knew it was between two piles of clean washing that I hadn't put away. Under the t-shirts but on top of the trousers. So I lifted up the t-shirts and pulled the letter out for him. For a second he had a surprised look on his face but then he was obviously amused by my filing system and started to laugh.

His laughter caused waves of relief to sweep over me. A little thing but it showed that he was pulling himself out of it and was on the way. He'll still probably be down for another day or two but last night I got my first proper night's sleep for days.


Wednesday, 29 September 2010

As you were

Another short one today.

My son seems to be coming out of it although he's still very low, but enough of an improvement for me to be able to get a reasonable night's sleep.

As I said yesterday it's so hard not being able to really help, in fact if anything when he's like this I have to back off a bit because he doesn't feel able to share. Like any parent I'd love to wave a magic wand and make everything better but life just isn't like that.


Tuesday, 28 September 2010

I don't know

Just a short post today because I'm very tired.

Something is wrong with my son but I don't have a clue what.

He asked me something on Sunday and I could tell by his tone of voice that he was down about something. In the evening I asked him something innocent and he got rather upset and started shouting, and when I saw him a bit later he'd obviously been crying.

Like anyone else his age he has emotions that sometimes boil over and I think (hope really) this is one of those times, but the worst of it is that he is totally incapable of talking about his feelings so they fester.

Yesterday we spoke briefly a couple of times and whilst far calmer he was still obviously down. I wish I could ask and help but no one can and that hurts like hell. Although this doesn't seem to me like an occasion where 'bad' will happen it's still very much on my mind and I have barely slept since Sunday.

Hopefully today will be better.


Monday, 27 September 2010

Good people.


Today I was meant to be posting part three of 'Moving' but I thought I'd take a day out from that to talk about some of the fantastic people that have helped us; if for no other reason that to provide a bit of balance and show that not everyone in the service is a complete and utter jerk!

The first person is the psychiatrist that we dealt with from the early days of diagnosis right up until my son was transferred to Adult Services. Quite a remarkable man who managed to both be on our side and tell us home truths at the same time. Always available to us and willing to answer absolutely any question I do sometimes wonder if our dissatisfaction with Adult Services is partly down to him being so good. At a time when everything was new to us all he guided, advised and chastised as needed. Also I should really mention the receptionist there who took a genuine friendly interest in both patients and their families.

Secondly is the OT (Occupational Therapist) that was assigned to Jr before we moved. A man of extraordinary patience and dedication who spent so much time and effort with my son. Although his remit was to get Jr out more for the first few months they never left the house; in fact it took nearly that long for Jr to speak to him but he built a strong relationship through music (my son is a fantastic guitarist). Although Jr suffered a big setback before we moved the progress made with this OT was remarkable to the extent that he was taking Jr out to group discussion sessions.

Thirdly is a local service provider who do 'classes' to help in various ways. This was the only thing that was arranged for Jr down here for a very long time and whilst it was very repetitive for him the staff there are superb and really bent over backwards to enable Jr to attend despite his phobias. Rooms were realigned and chairs reserved for him so that he could feel safe. These people (I really can't narrow it down here because everyone there has been so helpful) have shown themselves to be the exact opposite of the local mental health service and have shown genuine care.

Lastly (and I'm jumping ahead a bit in the 'Moving' story) is the psychologist we fought for him to see. There was supposed to be one assessment appointment and then a 20 week course but she knew immediately that wasn't going to be enough and she stretched the assessment process to 14 weeks! When he was 10 weeks into the course she extended it by another 10 weeks and now has agreed to continue the sessions as long as needed. All of that is fantastic but the remarkable thing is that she's got my son to talk to her, and not just talk but talk about his deepest feelings which I don't think he's ever really done before.

All these people have shown themselves to be exactly what people in the service should be and can be. In fact these people being so dedicated makes the behaviour of others even more disgusting.


Thursday, 23 September 2010

Moving (part 2)

So I left you in the last post with us asking the community nurse to leave as she was not interested in (or capable of) listening.

My son and I had a little chat about what to do next, both of us shocked by the ignorance and arrogance of this woman, and decided that I should go and see someone in authority to get some proper care sorted because neither of us were at all happy with the lack of care being shown.

I went down to the unit in person rather than phoning and asked to see the practice manager. They were on holiday so I saw their assistant. Frankly she was dismissive of my concerns but finally agreed to arrange more things for my son and I left it there. Two weeks later I phoned up, as nothing had happened, and asked what was happening. I was told nothing had been done and the reason for that was that my son hadn't talked to them himself. I asked what they were proposing to do about this and was absolutely shocked when she said there was nothing they could do unless Jr spoke to them. I told her (as she knew) that Jr couldn't talk to people and that was a major part of his problem for them to solve and she disagreed! I asked who was to treat him and she said I was being abusive and hung up.

I should point out that at no time was I abusive of aggressive in any way. When we asked the lady to leave the house I had my son in the room and he reacts incredibly badly to any kind of confrontation so I was very calm. As for the phone call, well as it happened my Mother, who has worked with mentally handicapped people in residential homes for 30+ years, was in the room and was also shocked that what I'd said had been construed as abusive – and my Mother has a famously low tolerance for arguments! The bottom line with this unit is that any kind of disagreement with them is taken as abuse which is as disgusting as it is ridiculous. Excuses and butt covering – that's what they specialise in.

I really didn't know what to do next so phoned my GP. Now as I used to live in the area and he's our family doctor he's known myself and family for 30 years and he was totally shocked by what I told him. I had a great conversation with him where he listened patiently to my concerns (even when I repeated myself) and took a genuine interest. He advised me to put everything in writing, copy it to him, and also to see the local MP who he would inform of situation.

So I made the appointment with our MP, and waited the two weeks to see him. Credit where it's due, he was very helpful and attentive to me and treated me exactly like an MP should treat a constituent and agreed that this simply wasn't good enough and that he was happy to follow it up for us.

Next post I'll finish this part of the story and tell you what happened after that – it really is shocking.


Wednesday, 22 September 2010

Moving (part 1)

Around 18 months ago we decided to move.

We were living in the region Jr had done most of his growing up and had a lovely old cottage out in the middle of nowhere. It was brilliant for him as he felt comfortable to go out a lot and got plenty of exercise but various other things started getting on top of him and he ended up telling me he needed a break and was thinking about getting sectioned for a while. We had a long chat about what his options were and one of them (the one he chose) was to move back to the area he was born, where my Mother still lived. She is getting on a bit and will need someone around soon so he knew I'd have to move back eventually so we decided to move here.

Now obviously as far as my Son's care there was plenty to arrange so we decided to move in about 3 months so there was plenty of time to sort everything out and ensure there were no gaps in his care. We told the various departments up there what was happening and as we had an address in the new area to use we registered with everyone down here a while before we moved and by the time we came to move we'd already had all the 'introductory' appointments so everything was set. We did a lot of work to ensure that his progress wouldn't suffer but it was a complete waste of time and effort.

Firstly the Mental Health Unit in the new area had at no point contacted his previous Unit and so knew nothing about him other than what we'd said in the introductory appointment. They had no notes for him at all when we moved and in fact all my son's notes then 'went missing in transit'. They then informed us they had no occupational therapists (rather vital for a mental health unit you'd have thought) and suggested other things for him, which included attending a unit that would try and help with his confidence etc. Not what he needed at all (he needed/needs one to one care rather than group therapy) but they said they'd arrange more treatments for him. Apart from that all they were initially offering was a community nurse to see him from time to time, and (very) occasional appointments with a psychiatrist.

I knew full well that he needed more than this, and said so, but was blocked at every turn. Even worse was the funding for the paltry care they agreed to. They couldn't let him start at the unit they arranged until finding was approved and that took another three months. Not three weeks – three months during which he was getting no meaningful help at all. In fact it should have only been two months but the funding people through out the claim as someone had transposed 2 numbers and as they only meet once a month that was how long that delay took. Also, please remember this was long before any of the current planned cuts to services and funding.

As I've mentioned my son is socially phobic and suffers from selective mutism (which means he can't talk when there are any people other than those he trusts most around) but to be fair the community nurse was starting to get something from him and make a relationship by getting Jr to fill out various charts. Obviously continuity of care is vital but just as they were starting to strike up a rapport he informed us that there would be a new community nurse from the next appointment. Of course, as you'd expect, there was a very good reason for the change. Well, no there wasn't at all – it was merely that the 'new' person was bored with working in the unit and wanted to go out more! She was absolutely awful, with a complete inability to listen to the extent that when she came round for the second appointment and referred to the first one she'd got everything absolutely and completely wrong. That made the second appointment a complete blow out but she managed to make it worse. She asked why we both seemed a bit stressed and I replied that it was because we didn't feel as though we were being listened to. Well I tried to reply but half way through she cut in and spoke over me. At that point Jr was too stressed to continue and I politely asked her to leave.

I'll tell you what we went through after than tomorrow.


Tuesday, 21 September 2010


I used my last post to talk about planning for going away and since we're back I suppose I should say how it went.

Well, frankly things couldn't have gone much better. We didn't have any problems on the way up, in fact for a little part of the journey my son was positively chatty! We arrived at his Mother's around tea-time and spent a pleasant evening there. The next day I left there around lunchtime and after doing various bits and pieces of the kind you do when you're going back to an area you've previously lived in for over a decade (and nipping off to a football match), in the evening I went round to a dear friend's house where I was spending the rest of the weekend.

Had a lovely time with her and her kids. I got a bit anxious on Sunday afternoon when my son phoned me but that was merely to see if we could leave a couple of hours later on the Monday as he had a friend coming round.

Monday morning I went round to pick him up and left just after lunch. To be honest I thought we were going to get caught up in traffic (I try to travel between rush hours) but apart from 20 minutes delay there was hardly any traffic. Even that delay was 'interesting' as it was for a burnt out car and you don't see many of them these days. There was one point where we had to pull off the motorway and find somewhere quiet so he could relieve himself but that was the height of the drama and we were home by six.

Mission accomplished – and with full success!

Actually there was one problem with the trip. I'd bought (coincidently) a new toothbrush and it was horrible. All bendy in the middle and I didn't like it at all. But I can live with that!


Thursday, 16 September 2010

Going away

Well, we're going away for the weekend.

My son is going to be staying with his Mother for the weekend and I'm going to be staying there the first night then staying with friends round the corner the rest of the weekend. In some ways I'm looking forward to a little break from my son, and quite frankly I think he's looking forward to a little break from me as well!

I'll tell you what though – a simple thing like this doesn't half take some planning.

The journey will take around 5 hours all told. My son doesn't have any problems being inside a moving car but the stopping is problematic. Firstly he can't get out at service stations or anything (nor can he use public toilets) so as you can imagine he'll be slightly strained by the time we get there! Although he can't use the service stations I can't drive 300 miles (safely) without a couple of breaks so we have to stop, but it can take a while to find the right space to park in. Not so close to the entrance that he'll have people milling around but also not so far away that he feels isolated. There have been times in the past where there simply hasn't been a space at the services where he can be left so we've had to go on to the next one.

Next you have the time honoured parental job of trying to make sure your child isn't bored to hell on the journey. This is slightly magnified as if his mind wonders too much he could get anxious and that's the last thing I want when I'm driving. We'll take my laptop so he can watch a movie but the battery won't last for ever so I end up hoping he sleeps for a chunk of the journey. I also end up hoping he'll wake up soon when I get bored and fancy a chat!

And of course there are the random problems. My Mother decided to tell him that whilst we are away she was going to clean his room for him. The first I knew about this was when he told me that he wouldn't be able to go, and then he told me why. His room is sacrosanct. It's his little area that he has total control over and no one goes in there – not even me. He needs the privacy and going in there would break that so whilst I'm obviously curious about how it is in there I have no idea. The upshot of my Mother's kind (if misplaced) offer? Well earlier today I fixed a bolt on the outside of his door so he can lock it while we're away. It'll come off when we get back (let's be honest – the last thing he needs is something that can lock him in!) but it's another thing that needed sorted out.

Today we need to get his stuff packed. I got his holdall down from the loft the other day so it would be downstairs for a while before he needed it but it'll still need a good shake out just in case. No doubt there'll be a last minute need for some emergency clothes washing this afternoon when he decides he wants to take something that's dirty, but I guess that's a pretty normal job for a parent really!

Hopefully the trip will go well. He should be fine at his Mothers and should there be any problems I'm only staying 5 minutes away, but I can't help being nervous.


Wednesday, 15 September 2010

Another waiting room

I've already talked about waiting around for something to happen but as a carer you also spend a lot of time in waiting rooms. For instance right now I'm at the psychiatry unit where my son has a weekly appointment with his psychologist. It's an hour appointment at a place about 25 minutes drive away so there's nothing to do but wait. There are some magazines around but I'm not a 'Hello' kind of guy so normally I just sit here reading a book.

But it's another part of being a carer that is so boring. I mean no one would choose to be stuck in a waiting room once a week for an hour, would they? Of course it's not just one appointment a week, as there are other appointments from time to time (like with his psychiatrist) where more waiting is involved. He also goes to a session once a week at a training centre where he's doing a course. Well, when I say once a week he finds that very difficult so often has to miss appointments but again I have to wait. Now this one isn't so bad as it's only 5 minutes away but I have to wait around with him until the session starts, and also make sure I'm there comfortably before it finishes because he has to be able to rely on me being there when he finishes.

Then there is the actual transport side. I've mentioned his social phobias so a bus is out of the question, as is the randomness of a taxi, leaving the only option for me to drive. Seems simple enough, but I haven't actually got a car at the moment. It rather died last winter and I had to get rid of it – funnily enough it is now a banger racing car – so I have to borrow cars. It isn't too hard for me to find a car to borrow but it often involves giving the owner a lift to where ever they are going which can be a bit of a pain. And picking them up again, of course. More waiting.

It's not just the obvious things that carers need patience for.


Monday, 13 September 2010


Imagine your child rolled up their sleeve, showed you their arm and it was covered in cuts and scars. Can you imagine the horror, revulsion and absolute fear? The dismay, the self questioning and the screaming 'Why?' at the back of your brain?

Please just stop and imagine for a second before reading on.

Well that happened to me. Although we didn't know it, my son had been self harming quite badly since long before any of his 'symptoms' became obvious. When I looked at his arm there was barely a square centimetre that wasn't scar tissue, and there were scars on top of scars.

I don't think I've ever seen anything that I found so profoundly shocking in my life, I really don't.

It was so out of the blue. He'd been talking about it to his wonderful psychiatrist at the YPU (Young Persons Unit) he was attending at the time and they'd decided between them that it was time he told someone about this particular problem and he'd summoned up the courage (it must have taken one hell of a lot if you think about it) to tell me. In the way that these things are often blurted out he said he wanted to tell me something and showed me straight off. I was completely shocked as I never suspected he may be self-harming for a second. But he was.

It was one of those moments where my reaction was going to govern how he coped with this and fortunately I managed to stay perfectly calm and just asked 'Does it itch?' Quite possibly the stupidest possible first question but also quite possibly the best as it calmed things down and he noticeably relaxed a little. He told me it did sometimes and sat down.

I really didn't know how to handle things but fortunately I knew enough to know the difference between the symptoms and causes and this was definitely a symptom. He managed to explain a little about why he did it, and that was because when he felt he was going to start to hallucinate it sometimes stopped it happening.

In the end I found that in many ways I was more worried about him getting infected from not cleaning the cuts properly (some had been quite deep) than the actual cutting itself. Apart from anything I couldn't stop him cutting but I could stop him from getting blood poisoning, so we agreed that I'd keep him in wipes, plasters etc to deal with the little cuts but if he did a bad one he'd let me help clean it.

It seemed to work pretty well and gradually the frequency reduced to the point where (as far as I know) he's only done it once in the last few years and whilst other treatments were far and away the main reason it declined I do hope I managed to help in a little way.

Obviously it was quite a dark experience but even there you sometimes find humour. A little while later I was encouraging him to help prepare our food to make him less paranoid about eating and he was helping me cook. I needed some cheese grated and asked him to. A few moments later I turned around and he was just staring blankly at the grater. He told me he couldn't do it and when I asked why he said he was worried he might cut himself. Well, we had been having a laugh and joke before hand and I just cracked up at the irony of the statement. Fortunately he immediately saw the humour in the situation and it's still something funny that is mentioned from time to time.

You've got to laugh sometimes.


Tuesday, 7 September 2010

The penny drops

When my son first 'got ill' I guess for a while we treated it like it was something short term and that the best way of dealing with it was by treating him as normally as possible. It seemed logical and it seemed to be the best thing to do but we reached a point where it was obvious that wasn't to be and, frankly, it broke my heart.

When he was 3 or 4 years old I took him camping in the summer. We went to a seaside town that I knew from my own childhood as I knew lots of places to take him, found a nice camp-site to stay at and had a wonderful time. Originally we were only going to go for a couple of days because I didn't want it to be too much for him but we ended up staying over a week and the next summer there was only one thing he wanted to do in the holidays.

Year after year we went there. Same camp-site, a lot of the same people, and excellent facilities made it a no brainer really and we always had a good time. The first summer we knew something was wrong (he was around 14) we still went and everything was fine. It really gave me hope that there was a way out of all this; no doubt helped by the fact he hadn't actually had a diagnosis yet.

By the next summer things had started to go steeply downhill but he still wanted to go camping and it seemed like a great (and reassuring) idea. With him being a little older I asked if he wanted to take a friend and so three of us set off.

Everything seemed to go well. Got there fine, set up the tents, and they went off for a while to be teenagers. All in all we had (what seemed at the time) the best day for a long time and about 9-ish we headed back to the tents which is when the problems started.

They were sharing one tent and I was on my own in one next to them but after about half an hour he came to my tent, quite distressed, and saying he couldn't cope with it, and to add to the situation it had started to rain heavily. He was getting into quite a state so there was no option but to leave. The tents were collapsed and thrown in the boot of the car and we set off for home in the dark.

It was a few miles on that the penny dropped. It was then that I realised this wasn't something that could just be 'got through', I realised it was going to be a major part of our lives.

That drive home was just about the lowest I got and I'm not at all ashamed to say that I was sobbing gently for a fair part of the journey. My son had a serious mental health problem and I was finally having to face up to it. In a lot of ways I also think that was the day that he realised as well, and possibly the day his childhood ended.

The tents? They're still abandoned in a bin bag at the back of the garage and probably covered in mould by now.


Monday, 6 September 2010


I'm bored.

So very very bored.

How do you fill day after day of what basically amounts to sitting around? Sounds lively really, doesn't it. Like most people for years I wished for a life where I didn't have to go to work everyday.

It's quite easy at first – after all I'm sure we all have lots of things we have put off until we 'have more time', and there are all the things that you've 'always wanted to do'.

But it doesn't fill 8 years.

I've watched all the shows I really want to watch. I've read all the books I really wanted to read. I've even tried painting. I really tried but I think the Play School house is the limit of my artistic ability so that didn't last long.

Now I just wake up every day hoping to find something to fill my day but the trouble is the more time you have the more you waste and the less you have the inclination to actually do something.

Yes, I'm bored.

So what are my plans for today?

Well, there's the excitement of doing some laundry. There's the excitement of hoovering. Then I'll probably go for a walk.

Stop press – it's raining.

*Scratches head.*


Friday, 3 September 2010

To sleep, perchance to dream.

Last Thursday night I didn't get much sleep.

I'm not the best of sleepers anyway but last Thursday was windy. Not just windy but proper blow things around windy. Things banging outside, and even bins being blown over. The wind also blew open the side door to the garage and that was banging away.

Now although I don't sleep well anyway natural things like that don't seem to bother me. Never the less I woke around 4am and went to get a glass of water. There, huddled up at the top of the stairs, was my son.

The banging had disturbed him and he'd convinced himself that someone was breaking in. He thought he'd probably been there for an hour or so and despite not hearing anything inside the house he couldn't leave his 'watching' place just in case. He had even grabbed something from his room to defend himself if needed.

I went downstairs and checked around for him; even going outside and shutting the garage door properly. I came back upstairs and told him there was nothing wrong downstairs and whilst he was obviously to some extent relieved he was still very much on edge. After about half an hour he went back to his room and I went back to mine. He finally slept, I didn't.

You just can't. Yes everything is fine but you know that anything might reignite his anxiety and even though I was sure he was asleep it made no difference.

You miss a lot of sleep as a carer. Whether it's things like this or just lying awake worrying in general, you see a lot of darkness. Even the nights you sleep through you're still not really settled and I can't remember the last time I woke up feeling properly refreshed.

Things like sleeping tablets are out of the question in case something happens. Maybe the most help your sleep can get is a cheeky glass of whisky before you go to bed but that doesn't really help. In the end you just get used to it, and that phrase probably sums up being a carer.

You just have to get used to it.


Thursday, 2 September 2010

Who cares for the carers?

I'm a bit under the weather right now. Nothing at all serious, just a stomach bug, but as a carer every time you feel unwell it's a worry.

Let's start with a premise that seems fairly logical. Carers save the nation a great deal of money year in year out. Take my son. If I wasn't here to look after him he'd more than likely need full time residential care, with paid carers. I've no idea how much that would cost but per year you must be looking at a comfortable five figure sum. You'd think, if only to protect the savings, that something concrete would exist to help in situations like this?

So what help is there when we are ill? Very little, if any. There is something called respite care which is all well and good except for a couple of things. Firstly it's not all that easy to arrange – let alone at short notice (ie when illness strikes). Secondly for many people with mental health problems (like my son) it is wholly inappropriate. Strangers (which is what they in effect are) are not something he can cope with and would increase his anxiety no end.

So who does care for the carers?

No one, unless you're lucky enough to have friends/family to do it. Health problems amongst carers are rife because we can't worry about being ill, or take the time to look after ourselves. Many carers have no one to turn to and obviously constantly worrying about being ill can make you ill.

There's another side to it as well – and that is that you often ignore things that are wrong with yourself as you have other things to worry about that are more pressing. I often have to go and see medical people regarding my son but I really can't remember the last time I bothered to see a doctor about my own health, and that's common with most carers. Our health and well being is secondary to (in my case) our children's health. Now you may be reading this and thinking 'that's how it should be – kids first' and I totally agree with you, but you're looking at it from a view where your kids grow up and sooner or later look after themselves. I don't have that luxury, and will probably be caring for my son until they nail me in which does make a difference.

The biggest worry is what would happen if I was hospitalised for a period, even if it was something incredibly minor. The only person that my son could possibly be looked after suddenly is my Mother but she is in her mid-70s now, needs a certain level of looking after herself, and won't be around for ever.

Worrying – that's what we do every day.


Wednesday, 1 September 2010

Waiting, always waiting.

As a carer you spend a lot of your time waiting for something to happen, and often the waiting is the hardest part.

As an example this happened a couple of years ago.

My son been bad (low) for a week or two and hadn't been eating properly. I was worried because I knew something was going to happen and in the evening he came down stairs and collapsed halfway. I went out to him and in all honesty my first thought was that it was down to him not eating, but he said he'd taken an overdose. He'd taken an awful lot of his meds and was duly rushed to hospital. They kept him under close observation until the next evening but then he came home to sleep some more as often all an overdose of those really does is make you sleep deeply for a long time. Turned out it wasn't any kind of suicide attempt - he had been having breakthrough symptoms (hallucinations) for the first time in a long while and wanted to stop them. One extra tablet led to two to three...

But in one way when it happened it was easy to deal with. Something happened and something had to be done about it. You react. The hard bits are the waiting for something to happen.

With any mental condition (or any long term illness for that matter) there are good times and bad times. Ups and downs if you will. If you're looking after that person you get to know the signs and you act accordingly. But when you know that sooner or later that crash is coming waiting for it is a nightmare. Waiting. Always waiting. Are you over reacting? No, you're sure. Things are going down.

And you wait. And wait. And there's no help anyone can give because nothing is happening for them to help with. And still you wait.

It can be hours. It can be days. Hell, like the example I gave it can even stretch to weeks. But you know it's coming. You can't do anything about it. In fact you can't really do anything at all.

Most plans need cancelled. Maybe sometimes people think you're unreliable and don't bother contacting you any more. I mean 'Sorry mate but Jr is a bit off. Can't put my finger on it but something is up, you know?' Of course they don't know. How can they?

Then 'it' happens. It crosses your mind how selfish you are that you're almost relieved 'it' is finally here. And you react. You do what needs to be done. That's the easy bit.