Tuesday, 24 May 2011

Living with Schizophrenia

As today is National Schizophrenia Awareness Day I thought I'd talk about the effect my son's schizophrenia has had on my life, what with this being a blog about being a carer..

Before his diagnosis I was in a well paid job (I was on 6 months unpaid leave at the time to look after my recently widowed Mother), working long hours but enjoying my career greatly. I owned my own house (although I was living at the other end of the country and renting it out) and had good savings. I'd always intended that when he took his gap year before university I was going to move back to Spain and buy an interest in a business over there. Everything was going great and my whole life was planned out.

The last 8 years or so have ended those plans. I had to give up on any idea of work to look after him and with that went (over time) the savings. Then I had to sell the house, luckily at a time when the property market was in a good enough state for me to make a decent profit on what I owed mortgage wise. I never claimed any benefits as firstly I doubt I'd have been entitled to them with my savings at the time but more importantly because I always thought we would 'get through it'. I don't mean that my son would be cured or anything silly, but that there would be the care available to him to enable him to live a reasonably normal life for himself. This simply hasn't happened and if anything the lack of available care has made his condition worse through inaction.

Now I'm skint. Don't get me wrong, I don't begrudge using my own money to look after my son in any way but the fact is that I have spent a large amount of money to be able to give him the care he needs. I won't talk about the problems I've had getting benefits as I've covered that elsewhere but the rubbish we've had to go through has been disgraceful.

Of course, whilst money is important there are far more things that have changed for me.

I guess one of the biggest changes is where I live. From a beautiful cottage in a tiny hamlet to having to live with relatives. Being Spanish living with family is a lot more normal than maybe it is to English people but it's still restrictive and at the end of the day you're still living in someone else's house. We've been here 2 years and probably 80% of my possessions are still boxed up from the move.

Then there is money. From being in a position where I didn't really have to think before spending money (although fortunately I've never been a spendthrift type of person) now every single penny counts. From little things like not buying newspapers and instead reading them on-line, to having to buy the cheapest of everything available, to not buying stuff I probably need as I just can't afford it, money is something that I have to think about almost every single day. It's just another worry to add to the pile.

Friends? Well I'm lucky that so many of my friends are incredibly understanding and put up with me having a good old moan without complaint, but there's only so many times you can be invited to something and have to say no before people start inviting you less. I try to get out a couple of times a week but sometimes that has to be cancelled at the last minute. My son tends to be able to cope far better if he knows I'm going out well in advance, and generally for these 'pre-booked' nights I'm OK, but the 'Come over, it's a lovely day and we're having a barbecue' invites almost always have to be turned down. I do feel far more isolated now than I ever have in my life and often feel quite lonely.

Health? As a carer you're so wound up in the person you care for that your own health takes a back seat. I always used to generally be in great health but now it's one thing after another. Nothing major, but colds and stuff like that are regular visitors to my body. Then there's the mental side of health and in common with many carers I suffer from depression. As much as I adore my son and am more than happy to look after him, it is bloody depressing day after day after day.

Transport? Well my son's paranoia means walking anywhere is a no go. He just can't cope with it. Every trip out to appointments etc requires transport and as my car gave up the ghost last year that means either relying on the kindness of people lending me a car, or of arranging a taxi. Even then sometimes there will be something about the driver which brings on his paranoia and they have to be sent away and another booked, and obviously that ends up costing more. Everything is so much more expensive when you're dealing with someone's phobias and paranoias.

Moaning? Oh do I moan these days! I was always a happy-go-lucky type person who never let things get to me but these days I always seem angry. Often it's down to my caring role as there simply isn't the service and support out there that there should be and I seem to have to fight everyday to get what my son needs, but I have noticed a change in my general demeanour (related to the depression as well I guess) in so much as almost every little thing makes me angry. I'm not talking about a violent type of anger, just a festering feeling that never seems to leave me. On the other hand I have to almost fake positivity in front of my son.

The future? What future? I have enough trouble getting through each day so thoughts of the future just don't happen. Day by day, that's the only way I know to get on with things and it's probably a mantra to many carers. In fact the only thoughts I really give the future is worrying about what would happen to my son if I wasn't around. How would he survive? Would he be able to cope with being in residential care that he'd need with all his phobias? I doubt it and it's something that occurs to me every single time I feel at all under the weather, which seems to happen more and more.

And then there is the abuse that I mentioned in my last posting, ironically then given voice by someone in the comments. 'Stop bleeding the state dry' type comments are all too common, as are various types of 'street abuse'. It's a fact of life these days and has got far worse with the vilification of the disabled (and by association carers) that is all to prevalent these days. Yes we both get benefits these days, but we need them and if society is really judged by how it looks after it's weakest and most vulnerable people surely it is right that we receive them at a level that enables us to live a basic life. So many things cost more if you're caring for someone because of what you need. I've mentioned transport but food is another problem. My son has long had phobic problems with food so the actual food, and it's preparation, is very important. Not only that but sometimes no matter how much care has been taken something will happen to put him off that meal but he still needs to eat so a meal is wasted. In fact it's got to the stage where I will often cook for him first so I can eat it if he can't rather than have to spend more.

But the biggest, hardest thing is the constant worry. How will he be today? What will I need to do to help him today? Can I help him today? And worst of all, as suicide is not at all uncommon and he has indeed tried a couple of times, there's the constant worry that maybe today is the day he won't wake up. Every single day hearing him move around for the first time sends a wave of relief through me.

Obviously everyone that suffers from schizophrenia is different (in much the same way that two people can get the same cold but suffer to completely different levels) but what I've written is the reality that I face with how my son's condition presents. I absolutely adore my son, but it's not easy looking after him and being there for him. Having said that I wouldn't have it any other way.


Tuesday, 10 May 2011

He Doesn't Look Disabled.

And there is the crux of the problem with many disabilities – unless people can see something obvious (like a wheelchair for instance) then people don't accept it.

My son is 22. He's over 6 foot tall and dresses in combats and hoody type clothes. If you saw him walking down the street you'd probably imagine him to be just another moody youngster, and you may even be worried by his appearance. But inside there is someone suffering from very difficult to deal with conditions and someone who is constantly terrified by the simplest of things. Someone who suffers from something called selective mutism and so can't actually talk to people. Someone who might even appear arrogant in his lack of communication with the world, but simply can't. Someone for whom actually going outside to walk anywhere is a stressful and difficult thing to achieve.

Of course there are many other disabilities where the people can converse but due to their condition may wrongly appear 'a bit simple'. Normally they are far from simple, they merely think about things and process information in a slightly different way that YOU don't understand. There are so many different 'hidden' disabilities that present in so many different ways, and there are probably people suffering from all of these walking down your street, anonymously, but waiting to be in some way abused.

I've mentioned before how my mother has been working in centres for people with mental disabilities for many years so being around people who are different is something I got used to but when it's your own flesh and blood it's different. You see you have to deal with the comments and insults. I grew up well aware of people's intolerance and could give so many examples but one sticks in the mind more than most. One of my mother's trainees (the term used then) had very little experience of going out so part of my mother's job was to help him get into the habit. He found it very difficult and especially found making choices in shops difficult. I clearly remember going out to town with them (as I often did) and we were in a newsagents. He wanted a chocolate bar but was having trouble deciding between two. This was a real dilemma for him but rather than just being patient the shop keeper started getting angry and told him in no uncertain terms to hurry up. It's true that we'd been stood in front of the chocolates for a few minutes but on the flip side it's also true that we were the only people in the shop the whole time so we weren't holding anyone up or anything. Well my mother's trainee got very stressed and we had to leave the shop, followed by a torrent of abuse. It was months before he could go to the shops again.

I was amazed and shocked by what happened and was even more shocked that my mother said it happened quite often.

These days, on the rare occasions my son goes out, I see it all the time. The tutting, the comments that we're not supposed to hear, the looks. All of them in effect saying he's being ignorant. And all of them fully understood by my son, each one making it more and more difficult for him.

Next time someone doesn't react exactly the way you expect them to don't automatically think they're being ignorant. Don't get me wrong, there are a lot of ignorant people around but there are also one hell of a lot of people that need that little extra help and understanding. Don't assume, but please do bear in mind that the person you're dealing with may just be wired differently and think differently.

And always remember that it's only because they are the minority that the way you think is considered normal.