Best Christmas Present Ever

Christmas is hard.

My son has a problem with being given gifts as it makes him feel very uncomfortable but as a parent you can't not give gifts! The way I've got round that is rather than giving them to him I leave them outside his room and tell him they're there so he can take them in when he feels comfortable.

I did that yesterday, and a few minutes later sent him a text saying that if he was peckish it might be an idea to have a look. I also said that I knew how hard it was for him and that he didn't have to acknowledge the presents or anything.

A little later I got a text back. It said "I do know it's hard for you as well. Thank you."

I can imagine how difficult even sending me that text was for him and, frankly, I had a lump in my throat when I read it. For me that was the best present ever.

xxx

Bullshit

I'm sorry about the title, but I'm afraid it's as polite as I could make it today as I'm absolutely livid!

We finally received a letter about my son's DLA and he has been put on the lowest possible rates. The reasons for this are that their judgement is full of lies about him, downgrading his problems. I won't go into detail about too much but (for instance) he is apparently not at risk of self harming even though he barely has an inch of his body not covered in scars. It's complete and utter bullshit. I've phoned up, and despite having been told a few times that I could speak for him apparently everything I was told previously was (surprise surprise) bullshit. Now there are more hoops to jump through before we can even appeal the decision and it could take months. During that time I'm still not entitled to any benefits. As I said, bullshit.

Second was that I finally got a letter from the Pathways Manager that I saw at the carers day. In her defence the letter appears to have been in the post a while (dated 27/10) but there are a few points. Firstly she specifically promised me a personal meeting rather than a letter, and then there's the content of the letter. Basically she's contacted the local unit and they've just looked at their files without actually checking anything. They say he's seeing a psychologist weekly (at the time the letter was sent he hadn't seen her for 6/7 weeks due to her having an operation) and also that he's attending somewhere else weekly; somewhere that he hadn't been able to go to for over two months. Bullshit. Absolute complete and utter bullshit, and a complete dereliction of their duty of care. The letter also says he's having regular appointments with a psychiatrist – personally I don't feel that having one appointment this year is in any way regular. I've been on the phone to her PA and by chance she's in our town tomorrow so we have an appointment; I feel she won't thank her PA for booking that one!

To be honest I'm absolutely sick of this. The way we've been treated is an absolute disgrace. I honestly feel they rely on you being worn down and giving up, but there is absolutely no way that is going to happen. If needs be I'm quite willing to go back to see my MP, GP, and even my solicitor as this is just not on. It's been incredibly stressful for me, and something that I know my son simply couldn't deal with. In fact just the worry of the letter from the DLA and the lack of money has made him quite anxious over the weekend because whilst he knows he needs help with things he at least doesn't want to be a financial 'burden' as well.

Bullshit.

xxx

Panic

About 11:30 last night there was a frantic knocking on my bedroom door, accompanied by my son calling me urgently.

I panicked. I assumed the worst. It's what you do, frankly.

I called him straight in, fearing what was going to come next.

“Have you got a spare notepad”.

???

Phew.

He was in the middle of doing something, needed to make some notes, and his notepad was full.

All was good, but the shock still stopped me sleeping for most of last night.

That is what it's like, being on edge the whole time, waiting for a disaster because you know that no matter how well things are going right now there is one coming up sooner or later.

It didn't happen last night, but I know it will.

xxx

"A Schizophrenic Has..."

Let me ask two related questions. Have you ever heard from any media source a story of 'a schizophrenic' killing themselves? Have you ever heard from any media source a story of 'a schizophrenic' killing or trying to kill someone? I'd venture that the vast majority of people would answer no, and then yes. That really annoys me for two reasons.

Firstly it's the way the perpetrator is reduced to a condition. Headlines tend to lead with 'A schizophrenic...' and it's normally not until after you've heard about the crime that you learn anything more, even the name, of the person. Let me put it this way – with virtually any other medical condition (which is exactly what schizophrenia is) you'd only find out about it after a few paragraphs. Now I'm not naïve, I realise that one of the reasons is it's an attention grabber but have a second to think of the way other 'groups' of people are often treated the same. I don't want to widen this into things I have no first hand knowledge of as that's not the point of this blog but to pick two examples that simply don't apply to me how about Muslims and Lesbians. Respectfully, I can easily imagine either word pre-ceeding 'has murdered' or something similar in a headline and it's prejudice pure and simple . Some might prefer to call it stigma against mental health sufferers but I see it as something more than that.

Getting back specifically to schizophrenia there's another dimension in that there must always be an enquiry, and it is bound to be used by the newspapers as a feeding frenzy. These things don't happen quickly, and added to the time (and consequently press exposure) that the crime takes to come to court often one crime can be a regular news item for a whole year. Frankly this breeds prejudice and fear (again there are parallels elsewhere) by not only worrying people about the 'group' but also how they are being 'controlled'. Ask anyone about schizophrenia and it's unlikely they'll be able to talk for long without mentioning violence. Not deliberately or through malice, merely through perception.

Secondly is how rare it actually is. Originally this was going to be a piece about suicide as that is a real and serious concern with schizophrenia, but I seem to have taken a diversion. They are also just normal people with a medical condition who, as normal people do, get angry about things and maybe lose their temper sometimes. Sometimes people lose their tempers and go too far in some way. The truth though is that perception is generally wrong when based on drip-drip reporting.

When my son was first diagnosed his doctor at the YPU spent some time with myself and his Mother to have a chat about any general things about the condition we'd like to know (he'd done the same with our son on his own which was how my son wanted it). One of the questions we asked was, due no doubt to our perception at the time, was about violence. He showed us a set of Home Office figures which showed that, in every category of violence against the person, people with schizophrenia committed way below the average of those crimes. He also showed figures that schizophrenics were far far more likely than average to commit suicide.

That's the truth of the matter, rather than the perception.

xxx


ps – I haven't been able to post recently as I've been rather diverted by something unconnected with this blog but I'm absolutely not abandoning it in any way. I very much doubt it could ever be a daily blog but I aim to put at least two posts up a week, most weeks. Thank you for taking the trouble to read this far.

I'm Lucky

Whilst the subject of this blog generally leads to rather depressing posts please make no mistake that I feel very lucky.

I adore my son and adore being a father. OK, it's hard sometimes but that's what being a parent is and I think it's just basic nature to want to look after my son. Despite his problems he is an amazing, articulate and intelligent person who I am incredibly proud of.

I'm lucky enough to have some of the best and truest friends anyone could ask for. I know that when I'm down there are a few people that not only understand what I'm going through but are always willing to listen to my moans. Absolutely priceless.

On the subject of friends I'm also lucky that when I moved back here I, quite by chance, hooked up with a load of people I've known virtually since childhood. My local pub is more a social club than a pub and not only is there always a friendly welcome but also it's an escape if I want it to be.

My Mum. OK, she's pretty clueless when it comes to looking after my son but she is always willing to help and genuinely tries her best.

Me. I'm strong. I was brought up to be strong and cope with whatever came along and couldn't do it if I was any different. I know, from things I've been through in my life, that I can cope with pretty much anything.

Little things. I've always appreciated the little things in life as they are what makes it matter. This has meant that I've always been able to appreciate and praise any little thing my son achieves. Sometimes he just looks at me as if to say 'yeah but that's nothing' but I know he appreciates the backing.

The internet. Seems silly to mention but the amount of information (after ignoring rubbish sites!) available is amazing. Not only that but it helps connect with other people that might be going through similar things.

For all those reasons, and many more, I genuinely feel lucky.

xxx

Peace and Quiet

Last Tuesday was absolute bliss.

Last week we went up North again so Jr could see his mother as she hasn't been down once since we moved last year. Drove up Monday and after a couple of hours round at hers to make sure he was settled I went to stay with a dear friend for a few days.

She had to go to work on Tuesday and originally I thought her elder daughter was going to be in but she went out for the day as well. 10 am and the house was empty. Silent. I had a day and absolutely nothing to do or to worry about.

Then my friend called – she'd left something at home she needed and could I get it sent over in a taxi. Well as it wasn't far I jumped in the car, dropped it off and headed back. 10:45 and I was back in the empty house having a cuppa. I just sat there for a while enjoying the absolute silence and then made some lunch. After lunch I took a stroll to the local shop, bought a paper, and spent the afternoon slouched on the sofa reading it from cover to cover. I genuinely can't remember the last time I was able to do that and such a simple pleasure gave me so much joy. I even did the soduko, and I'm not really into puzzles.

Around 4:30 the door went and my friend was back, with her younger child who she'd picked up from nursery. Elder daughter turned up half an hour later and we had a lovely evening but nothing could take away from the joy of solitude I'd felt earlier.

It probably seems silly to most people, taking so much joy from something so little, but it's such a rare occurrence for a carer that it really is something to savour. Respite care works for some but with Jr's trust issues it's a non-starter but I didn't even worry about Jr as I know that as his mother finds it difficult to deal with him when he has problems she would call me at the first sign of any problems (of which there weren't at all).

My friend noticed how relaxed I was and commented on it in the evening. She even offered to take the kids out the next day to give me another day's peace and quiet but I didn't want to get too used to it; anyway they're an adorable family and spending time with them is always a pleasure.

xxx

Wilf

Just a short post to explain the lack of posts recently (and next week).

Sadly, the weekend before last, a very dear friend of mine died of liver cancer. It wasn't unexpected, but it was sudden. He'd gone into a care home for the weekend to get used to it before moving in shortly, but got worse very quickly and passed a day later.

I haven't really felt like posting, partly because what I have to post about is generally on the depressing side, so have been somewhat avoiding this site. Also there is a slight amount of guilt that I wasn't one of those who was able to rush over there to see him one last time. He really was a special person.

We're burying him tomorrow, then my son and I are going away to his Mum's for a week, so normal service should be resumed after that.

xxx

Updates

Haven't been able to write much recently but here's a quick update on a couple of things.

Benefits - still waiting. We've had another letter saying it's being processed so I phoned up to find out what was happening. I spoke to three different people and the best they could tell me was that it was being processed and they should make a decision 'within a week'. Hmmm.

As for my mini-revolution and the promises to get back to me within a week - well I'm not at all shocked that she hasn't got back to me. I tried to contact her today but she's 'not in today'. Hmmm.

Something slightly positive to end. We got a bill through on Saturday that said because of the benefits my son was receiving (!) he had to pay towards care he wasn't receiving. That was actually sorted out in one phone call. I;m still in a state of shock over that.

xxx

Revolution

Last week I went to a 'Friends and Family Information Day' arranged by the local Mental Health Trust (or whatever it's called this week). I didn't really know what to expect but thought it could well be worth going to. As I had borrowed a car to get there I was asked to give someone a lift, which was no problem, and at 8:30 I was wondering around a strange road looking for her house. Fortunately she found me and off we set.

The first thing that struck me, both on the way and when we got there, was just how much carers want and need to talk about things. From stranger to knowing whole family details took on average a minute or two and I guess we spend so much time isolated that when we are in a group there's a freedom and understanding you don't really get from friends no matter how they try.

It all started off quite well – they had a couple of opening pieces and then a group thing where we talked about what made us anxious and how we coped. These were then collated and it's fair to say most tables came up with almost exactly the same things as our worries are pretty universal. Unfortunately before anything could come out of this they moved on quickly to a speech by the Chair of the local trust. You know the sort of thing, we're wonderful and we try hard. He said he was new and there to learn but it was all basically self congratulatory clap trap.

Then there was supposed to be a piece entitled 'Opportunities and Challenges Facing the Directorate' given by the Director of Operations. He couldn't attend (never explained) so his deputy gave the speech and again we were being told how wonderful they are. When she started telling us about all the services available I was shocked to hear her say that all units had OT's as I've been told everytime I've said my son needs one that there aren't any at my local Unit. I pointed this out and was told I was wrong! I then pointed out that if she believed that I could be back in an hour with letters from that Unit saying they had no OT's on staff and couldn't provide my son with one. At that point someone else pointed out that they couldn't get an OT at their Unit either and other people started pointing out other things she'd said that simply weren't true. In some ways I felt a bit sorry for the lady being dropped in it like that at short notice but out of around 50 people in the room more than half were pointing out the lack of services she had said were available.

To be honest the whole day stank. The lady 'running' the day stopped the questions and wanted to move on as there was no time in the schedule for questions at all. Frankly the whole attitude of the day was 'We're here to tell you', not to listen. How on earth can you arrange something like that and not imagine that the carers are going to ask questions? Ridiculous.

Well everyone's dander was up and when we broke for lunch shortly after she and the Chair were pretty much surrounded. She promised to look into all our cases individually and get back to us. 'Would you prefer a letter or email?' she asked and I said that I wanted her to meet me face to face and everyone else agreed they wanted the same. Revolution!

The afternoon followed much the same style in so much as we were being talked at and a lot of people spent more time outside talking amongst themselves which was far more productive. The stand in lady (who has the rather meaningless title of 'Access and Recreational Pathways Manager') spent most of the afternoon in hiding and despite them saying all day that the session had to finish at 3:30 it didn't as the Chair decided he wanted to make another speech. It was slightly different to his other speech in so much as he claimed he had learnt a lot but looking at him it really seemed like nothing more that empty words, especially when he started talking about the challenges facing HIM form the upcoming 20% cuts to services. I asked (over him) what about the challenges facing us but despite this getting a round of applause he skirted over it for some more self congratulation.

These are the sort of people, and the sort of attitudes, that we have to deal with every single day and it's an absolute disgrace.

xxx

Benefits - an update

I talked the other week about how my son's benefits had been stopped for no reason and we were having to re-apply, so I thought it time to do an update.

This claim was supposed to be treated as urgent since my son is currently receiving no benefits at all. This claim was received by them in August, so there's been plenty of time to sort it out in my opinion.

In this time he has received two letters saying the claim is being processed. I've just got off the phone trying to find out exactly what is holding it up and they said they're still collating details. When I asked what exactly that meant I was told that was what was happening. Not much of an answer really, and after some pushing it appears they're waiting on a letter from his psychologist. I checked with them and, although the psychologist is off this week, her secretary told me that two copies had been sent and they had confirmed receipt of the second copy to her. Rather kindly she agreed to fax a copy directly to them if I got a number.

Back on hold, and when I got through to someone and explained the situation they told me they didn't accept fax copies. I pointed out that this was wrong as they had previously asked me to fax them some details and, after talking to someone else, she provided a fax number. I asked about the missing letter and, despite admitting they had confirmed receipt, she said it appeared to have been lost. I asked why, if they'd lost the letter that was holding things up, had they not tried to do something about it and was told that's not how they work. To be fair she was actually quite helpful and promised she'd look out for the fax personally but frankly I've little faith at all.

But here's hoping.

xxx

Feeling awkward

Last Thursday was a bit strange for me.

I play for the pool team at my local and during the season we have matches every Thursday evening. Last week we were playing at home and when their team arrived I was thrown.

In my post about good people the other day I mentioned the local service provider that my son has been going to and how brilliant they've been – when the other team arrived the main guy that had helped so brilliantly there was on their team.

Now he is a genuinely personable guy and we've had plenty of short friendly chats 'at work' but this was the first time in all these years that I'd bumped into anyone connected to my son's care in civvy street and it threw me. Now I should say that my friends that I play with all know my situation to some degree or another so there wouldn't have been any problem with saying this is so-and-so that helps Jr but I didn't. I don't really know why but it was a very strange feeling having two parts of my life that are normally separate collide like that. Another thing that had crossed my mind was that maybe he didn't talk too much about what he did to team mates and would it be awkward for him. We exchanged pleasantries and that but nothing more really and I think in a way I was worried about discussing anything much to do with Jr behind his back so to speak.

Even stranger was when I came to play my singles match. I couldn't concentrate properly as every time I started to line a shot he seemed to be sat in my eye-line. All very strange.

As it happened I won my singles and played in the last doubles with the score at 4-4. You can guess who was on the other pair, can't you. Funnily enough I found playing directly against him far easier – and at the back of my mind I could imagine the stick my son would give me if I had to tell him who had beaten me – and we won the game and the match. They left shortly after and as we all shook hands we kind of nodded to each other in the way you do when something has been unsaid.

After he'd gone I felt so damn silly.

The thing is though that as a carer there are different sides to your life and sometimes your sanity needs you to keep them separate. My weekly pool matches are 'my time' and somewhere I can forget about my real life. I'm not in any way a withdrawn person (for instance I'm normally the first one to go in when we play away) but this time I was rather. In a way I feel a bit ashamed about how I was as the guy has been so helpful but we're going in there today (if Jr is up to it) so I'll have a quick word with him.

xxx

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.

xxx

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.

xxx

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.

xxx

Good people.

Hi.

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.

xxx

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.

xxx

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.

xxx

Toothbrush

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!

xxx

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.

xxx

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.

xxx

Self-harming

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.

xxx

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.

xxx

Bored

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.*

xxx

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.

xxx

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.

xxx

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.

xxx

Benefits - everyone's getting them...aren't they? (part 2)

So, we got the forms and I spent years having to fill out all kinds of paperwork so we must nearly be there?

Yeah right.

Firstly the DLA form itself. Only took 5 days for it to arrive. Only? Well this was their super fast service so goodness knows how long it would have taken by 'normal service'. I can only think that they must have been overstocked because rather than just sending me one form two arrived (with a third to arrive a few days later). Well I suppose it's better that than nothing.

So what is the form? Well it's 40 pages long for a start. Fortunately the language isn't too hard (indeed it has a 'Plain English Commission' stamp on the back) but the form itself is a nightmare.

First problem – it is blatantly written with physical rather than mental problems in mind. It is simply not appropriate for mental health sufferers at all.

Second problem – it is far too intrusive. I'm sorry but to judge whether someone needs help I see absolutely no reason why the department of Works and Pensions need details of what drugs are prescribed and at what dosage. It's not as though the forms go to a doctor to be judged – they simply go to someone who follows a form and awards 'points'. And we're only on page 4.

However there is a much bigger problem than that – and that's the fact that my son simply couldn't fill in the form alone. Not only is it a lot of pressure for him to fill in a detailed form correctly, but it's also a very harrowing experience.

His schizophrenia results in him suffering from extreme paranoia and one of the most difficult things in the world for him to do is talk about himself, his feelings about things and their effect. Not only is the form pressing him to relive anything and everything that he finds difficult but also there's the detail. Can't prepare food yourself – well how often and how many minutes each day do you need care with that. Etc etc etc down to how often do you go to the toilet each day!

Fortunately we had the extra form so rather than having to sit next to each other leaning over one form (which he would find incredibly difficult) we were able to sit comfortably with a form each so I could help him fill it in. After an hour the form was done, but that wasn't the end of it.

As I said one of the problems with this form is how he had to relive a lot of difficult things, and more to the point think about what he had problems with. Now surely it's obvious to anyone that making someone suffering from paranoia go through that is a bad thing? And it was.

He changed. For maybe a week he was still affected by filling in the form. He was subdued (more than normal), he was strangely distant, and he had a lot of problems with both eating and sleeping. He has suffered eating disorders before (due to paranoia about the food) and I have to be very careful with him and food but for the best part of a week I was worried that having to think so much about what problems he had was going to be disasterous for him.

Fortunately it wore off and he's back, but how can I explain the worry that I went through whilst he was 'down', let alone what it did to him? Why the hell does someone who is to all intents and purposes completely incapacitated have to go through this? Surely there should be an easier way, especially as he's known to his GP, local Mental health unit, the head Psychologist locally, etc etc. Why can't their simply be a brief form for his GP to sign? I mean as changes to the NHS are going to leave funding in the hands of GP's surely they are trustworthy enough to comment on the disability levels of their patients?

That's just one benefit, now we have another form to fill in for another benefit. I haven't had the guts to even open the form yet because I'm afraid of what we'll have to go through; and also that they want him to be seen by an independent doctor to 'judge' him. How dare they, really how dare they! It took him three months of intensive therapy from a wonderful psychologist to even be able to talk in her presence yet he will have to go and see a stranger!

Oh yes, I didn't mention how long it will take to get an answer re his DLA. Obviously with his benefits being stopped by someone nameless for some unknown reason they'll sort this out quickly. Obviously. Nope – it will take up to three months!

Thank you so much, DWP, for cocking up his benefits in the first place then causing so much disruption and pain in correcting YOUR errors.

Remember – 3 times as much in benefits is unclaimed as is taken in mistakes/fraud. There's a reason many people just don't apply for benefits that they are fully entitled to – it's simply too much for some to actually go through with and that is a disgrace.

xxx

Benefits - everyone's getting them...aren't they?

As a carer sooner or later the minefield of benefits has to be crossed. You may have recently seen figures in the press putting benefit fraud at around £5bn a year so if there's that much fraud it must be easy to get them. Well you'd have thought so...

Firstly that £5bn figure. It's a distortion at best and a lie at worst. Something like £1.5bn of that was actual fraud, the rest being genuine mistakes made by both claimants and by the officials involved. But there's another figure of around £16bn that got little publicity – that is the amount of unclaimed benefits per year. Why so much? Well that's down to the ridiculous system and maybe our current situation goes a little way to explaining that.

Around 6 months ago I applied for carers benefit. My son was on full DLA (Disabled Living Allowance) so I was fully entitled, and frankly the money would be handy (little as it is). I applied and after various delays with them wanting more paperwork from me and other things a few weeks ago I got a 'judgement'. I wasn't entitled to it from the date I applied as it was now too late (!) but it would be backdated three months. Then the shock – I wasn't entitled to anything for that period as my son didn't get a 'qualifying benefit'. What? Two hours, and countless phone calls to different (frankly indifferent) departments later, I found out his benefit had been changed last November (to incapacity benefit) without us being told at all – and no one could explain why. Worse than that the incapacity benefit had been stopped a few weeks earlier as we hadn't replied to a letter we never received. Yup, with our 100% reliable postal system not replying to one letter is enough to stop a handicapped person's benefits. So, rather than finding out what I was going to get I was told that not only was I not going to get anything but also that my son's benefits had been stopped.

OK. Calm down. Breathe.

The local Mental Health department has a benefits helpline so not really having much of a clue about benefits I gave them a call to find out exactly what we should claim. Now you'd thing a helpline connected to a Mental Health department would have a clue, wouldn't you? I made that mistake as well.

Firstly he kept talking about making the claim over the phone. I explained that because of my son's phobias he can't talk on the phone. I was told that he only had to confirm basics and that I could do the rest. I explained that because of my son's phobias he can't talk on the phone. He then told me that was fine as he would only have to confirm his name/address. I explained that because of my son's phobias he can't talk on the phone. But he doesn't have to talk much was his reply. I explained that because of my son's phobias he can't talk on the phone. I also put another head sized dent in the wall.

Eventually he seemed to understand that because of my son's phobias he can't talk on the phone. As there were two different benefits to apply for this meant having to phone and deal with two completely different departments and he gave me both numbers. Ok, getting somewhere.

Knowing what benefits my son could get the next question was what could I get. I was told the only thing I could apply for (until my son's benefits were sorted) was Job Seekers Allowance. I pointed out that surely as that depended on me actually seeking a job what was the point? He said there must be some time I can work as my son didn't need 24/7 care – and this was without him having a clue as to Jr's condition. I pointed out that he did need that level of support so what could I do? Apply for Job Seekers Allowance was the answer again, so again I pointed out that there was no point as I wouldn't qualify. He then started getting stroppy with phrases like 'How can I help you if you don't do what I say?'. I politely asked what was the point of wasting time applying for something that I couldn't get and was told I had to because that was all he knew.

Oh dear. Rather gave up on him.

I phoned the numbers for my son's forms and waited for them to arrive. I've run businesses before so how hard could a little form be?

I'll tell you next post.

xxx

What is this then?

Well I'm a 43 year old man with a 22 year old son who happens to suffer from acute schizophrenia and many related anxieties/phobias and I wanted to write about what it is like. To be honest I'm probably going to be writing this more for me than anyone but maybe some people might find it of interest.

I used to run warehousing/distribution type things until my Father and girlfriend both died in a short period of time. I decided to take a year off, not only for myself but also to help my Mother who was finding it incredibly hard to cope, and lived a few hundred miles away from me. It seemed a sensible thing to do (and it was) as I had plenty of savings and taking a year out wouldn't be a problem.

During that 'year out' my son was diagnosed and his problems mounted. Over a short time the symptoms got worse and I had to spend a lot of time looking after him. Eight years later I haven't been able to go back to work since and the savings have gone now so things are difficult. However, whilst being the hardest thing I've ever done, trying to provide and source the best care for my son has also been the best thing I've ever done.

I'm just another carer, and sometimes it's hard.

This blog will probably be a mixture of explaining what we go through, no doubt a healthy sprinkling of outright moaning, and random thoughts about our situation. As I said it's mainly for me but if you find it of interest, or better still it makes you think a little, then that's wonderful.

xxx