Day to day

Today I thought I would post a little bit about what it's like living with a person suffering from Schizophrenia. I'm not talking about when Mr Man is psychotic and everything is a bit scary, I'll talk about that another time, along with those symptoms and how they affect him. I'm talking about living with the illness on a long term basis from day to day, because there is no doubt about it, no matter how "stable" his symptoms are, life is different.

I often bump into friends or acquaintances in town and they will ask me how Mr Man is. I always find it difficult to know what to say; I'm never really sure what it is that they actually want to know unless they ask specific questions like: "Is he at home now, or still in hospital?", "Does he get out much?", "Is he well enough to be left alone now?" But to ask "How is he?" - it's not usually as simple as "He's fine" or "He's not good", it's more complicated than that. I usually just say "Well you know, same as usual". I then often get that sympathetic look from people as they say to me "It must be very hard for you". This is another thing that I find very difficult to respond to. I usually just say something like "Yeah, sometimes" or just "Well, it's harder for him". But I go away wondering to myself just what it is exactly that they think I have to endure.

Our marriage has changed a lot since the worsening of Mr Mans symptoms, and his subsequent diagnosis. (Yes, believe it or not, I had no idea that he was suffering from Schizophrenia when I married him and he wasn't diagnosed until we had been married for 5 years, although he had been poorly for longer than that. More about that another time.) But although there has been a lot of changes, they are not all for the worse. The bond we have is much stronger now, and due to some of the experiences that we have shared (which I will go into in more detail another time) we have a trust that is unbreakable. He knows that I am fiercely loyal and protective of him, and I know that his love for me is so strong that he would give up his life for me. But yes, I suppose it is hard sometimes, and there has been a need for quite a few adjustments.

I don't suppose that the problems we face on a day to day basis are the ones that people imagine when they say "It must be hard for you". I suspect that maybe they think he suffers mood swings? Maybe even becoming violent? Maybe they think that he is extremely delusional all of the time, and has no ability to connect with the real world at all? I have no idea. But in reality the things we cope with day to day are more to do with the "negative" symptoms* of his illness, such as being withdrawn and not wanting to mix with people, and not taking care of himself physically. These problems can be at different degrees, but at the very worst he won't get out of bed at all, and I struggle to get him to eat or drink. Usually he is far more functional than that, and to anyone that doesn't know him well, he probably looks like there isn't anything wrong with him at all, apart from being a little antisocial.

The usual problems that people don't see are things like:

• Not changing his clothes or underwear - recently he started changing his T-shirt each day without prompting, because he wanted to wear his football shirts for the World Cup, but that was short lived and usually he won't change his clothes or underwear unless I tell him to, or even get them out for him.
• Not washing or bathing - usually he doesn't even brush his teeth unless I remind him, and he won't have a bath unless I run it for him and tell him to get in it. Gentle reminders don't work. Thankfully he's not really a smelly person.
• Not eating or drinking properly - he doesn't refuse to eat these days if food is prepared for him, but left to his own devices he doesn't even think about eating, and even if he does realise that he needs to eat, he doesn't really know what to do about it. I've tried giving him options as to what he can eat while I'm out, saying "If you get hungry you could eat this or that" but I am realising that options don't work. He is more likely to eat while I'm out if we decide on what he will have if he gets hungry before I leave, and even more likely to eat if I say "If you get hungry and you don't eat I'll be upset". Drinking is not so bad; he'll make himself the occasional cup of tea, but I was a little worried when we had all that hot weather. I was aware that I was constantly drinking, and he wasn't. I had to keep reminding him to have a drink.

These problems can become draining when they're on a day to day basis. Sometimes it's like having a child that never learns how to do things for himself. There are other challenges as well, such as having to cancel arrangements with other people, either because he doesn't want to come with me and have to mix with people or because he doesn't want to be left alone, because he suffers from a lot of anxiety. I found this very hard to start with because I am a very sociable person. It can lead to a lot of loneliness because unfortunately people don't always understand, so after a while they stop inviting you. I'm getting used to being at home more now though, and having other hobbies (such as blogging) helps. If I go out I always have my mobile phone on me so that he can contact me whenever he needs me, and I sometimes have to cut plans short if this happens. Also it's sometimes difficult to have visitors, although he is very understanding that I need to see other people, and so if it's too much for him he'll just disappear upstairs. (I really think I'm very lucky in lots of ways, because it would be so easy for him to say he can't cope and that's that)

Other frustrating things are his lack of memory, and the fact that he doesn't like change. This is one thing that has become an issue today, because after 9 years of staring at the same dreary net curtains I wanted to change them, but of course Mr Grumpy is not happy. (Mr Grumpy is his favourite Mr Man, and I call him this affectionately, not as an insult) In reality I wanted to change round the whole living room, decorate it and everything, but just having to live with different nets is really his limit (blinds were definitely a no no). On the bright side, his memory is so poor that after a couple of days he probably won't even remember that I've changed them! (When I was trying to convince him that new curtains would be nice, I drew his attention to curtains in another room which I had changed a couple of months ago, saying "You like these ones though don't you?" His reply was "Have you changed them then?") At least he has a sense of humour about his memory loss - more about that another time.

So, when people say "It must be very hard for you" yes, I suppose it is, but in a lot of ways it could be far worse. I could be married to a man with a roving eye, a man that shows me little or no respect, or someone who is utterly selfish. Instead I'm married to a man who is willing to die for me, a man who appreciates me, and a man who despite his limitations still tries to put me first. Of course he is delusional sometimes, and his hallucinations are always there, and these present completely different problems. I will talk about this another time.


*Negative symptoms are aspects of a persons personality that are kind of "missing" in people with Schizophrenia, such as lack of motivation to do anything or to care for themselves, and an inability or unwillingness to mix with other people.

"I have lost the colours of my character"

"The Negatives" by Philippa King

Patient UK says:

Negative symptoms can make some people neglect themselves. They may not care to do anything and appear to be wrapped up in their own thoughts. For carers, the negative symptoms are often the most difficult to deal with. Persistent negative symptoms tend to be the main cause of long-term disability.

There are also "positive" symptoms, and these are things that are kind of "extra" that other people wouldn't suffer from, such as delusions and hallucinations. I will talk about these more in depth next time.