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.



  1. I saw the link to your blog you put in the comment section over on so I followed it over here. As one who has spent what feels like a lifetime dealing with the demons of schizophrenia, I felt compelled to post a comment here. My brother has suffered from schizophrenia for 25 years now. He turned 48 this year. He has spent his last two birthdays in a mental health facility, committed there by the court after being adjudicated as not competent to stand trial, in an attempt to treat him and restore him to legal competency so he can stand trial for a gun related felony he committed in February 2009. He shot up his apartment in what was an attempt to defend himself from something he felt was coming to get him. Unfortunately, one of the shots hit an adjacent residence which made this a more serious offense. My brother, unlike your son, has staunchly maintained for 25 years that there is absolutely nothing wrong with him, despite being involuntarily committed two times to mental facilities where he has been definitively diagnosed with paranoid schizophrenia. Between those times there have been numerous stints in jail for a variety of offenses committed while delusional or intoxicated. The only medication he has taken has been forcibly administered during his current incarceration. But these seem to only solidify his insistence that nothing is wrong with him. He has had auditory and visual delusions off and on over the years. He has worked enough to be able to take care of himself, but eventually he has always succumbed to the voices and lost his jobs or been unable to function for a period of time. He has completely detached himself from friends and family over the years. In his mind we are part of the conspiracy against him.
    Your son is very fortunate to have someone to watch over him. We have been essentially helpless to aid my brother, except when he is swept up into the criminal justice system and needs legal representation. But in spite of the help he receives at those times. he still will not speak to any of us. I have a deep fear about what might happen with him as a result of this latest incident that currently has him sitting in jail awaiting a trial in about three weeks. I have no doubt that during the last 19 months, while he has sat locked up in either a jail or mental facility, his distrust and loathing of all of us has only grown greater. As you know, there is no way to describe to someone unfamiliar with this disease how gut wrenching it can be. For 25 years we have watched an educated, intelligent and outgoing person slowly deteriorate into a broken individual, all the while refusing to recognize or acknowledge that he even has a problem.
    I wish you well with your son and hope that he recognizes how valuable a support system that he has. I’m afraid the future for my brother is not so hopeful. I’m not really sure how much longer the road will even be. The prognosis for an untreated, long term sufferer of schizophrenia is very, very grim. All of my family knows this, but it does not make it any easier to accept. I can only wish you well and let you know that there are others who understand the heavy weight of the burden that you bear. It is not something I would wish on even my worst enemy. If there really is a living, breathing evil in the world, it would have to be schizophrenia. I wish nothing but the best for you and your son. I don’t know either of you, but you will most certainly be in my thoughts.

  2. Hi Mike.

    Thanks for your kind words. In this respect I am very lucky in so much as apart from a short and terrifying period my son has always accepted his condition and the medication he has to take. I genuinely can't imagine what it is like for you and your family.

    One point I would like to make for anyone reading is regarding what you say about your brother being intelligent and educated. People don't appreciate (due to press coverage and popular misconceptions) that a large proportion of schizophrenics are highly intelligent people. In fact because of the increased brain activity that is part of the condition the average intelligence is higher than in the general population. The only difference is that a schizophrenic's brain can work so fast that it can't process the information correctly which (in part) leads to the hallucinations etc. The main purpose of many of the drugs used is to slow that brain function down to a level that can be coped with.

    Be strong my friend, it's all we can do. My thoughts are with you and I hope in some small way making that post has helped you.


  3. Yes, the misconceptions about this illness are quite pervasive. Much well intended but ignorant advice is often given by others. While there is a lot more support out there than there used to be, most all of us are still left to feeling our way along in the dark, making the best judgments we can based on our perceptions and understanding of our own personal situations. While I, as a sibling, deal with it in one way; I can't begin to imagine the toll that this has taken on my parents. I have found over the years, in my discussions with mental health professionals and other families who are dealing with mental illness, that the situation we have with my brother is really very unique. In fact, I have been told by some professionals that they have never quite encountered someone like my brother. I think a lot that is due to his high intelligence. And for some reason I don't find the fact that he is such an outlier in the experience of the professionals to be very encouraging.

    Dealing with an intelligent individual who is having even a moderately psychotic episode can be quite disconcerting. Rationality has to be thrown out the window and you almost have to put yourself into your own self induced psychotic frame of mind in order to wade through the event. It is mentally and physically exhausting. Mainly due to the fact that the intelligent schizophrenic's viewpoints during a psychotic episode do often have some small basis in fact, but the most improbable and outlandish connections are made in their thought processes. But they are as real to them as the sunrise is to you and me.

    I will periodically check your blog here to see how you and your son are doing, and will drop a comment now and then if it seems appropriate. Take one day at a time and enjoy the good days. Life is too short and, in the end, all we have on this pale blue dot is each other.

    Take care.

  4. Hi Mike.

    Your middle paragraph - I couldn't agree with it more or possibly put it better myself. I really don't think anyone that hasn't been in the situation can begin to comprehend the way that at times you have to accept a completely different in reality as being as true to them as ours is to us.

    Thanks for your interest.


  5. I don't think you are selfish being relieved that 'it' has finally happened I think it is a natural reaction to a long waited for an unknown event. you know something is coming but do not know when or how bad it will be, will this be the one that sends him over the edge completely and makes him do something terrible to himself? I am not just talking about self harm here but maybe you know.........
    so when it finally comes and it is something you can both handle, bad but not as bad as maybe you feared then yes it is natural to feel some warmth / relief almost glee because that was another one swerved. Your respite is brief enough before another cloud appears on the horizon enjoy it while you can in whatever way you can. That’s how I feel about my depression; make hay while the sun shines because tomorrow I may feel like ending it all.

    It is true what so you say about intelligence and mental health problems, life is essentially ridiculous and anyone who can’t see that or takes it too seriously is a fool. Problem with me is I see the futility of existence and it sucks the fun out of everything if I let it. If I did not have a very dark sense of humour I don’t think I would have survived as long as I have.

    Forza! as the Italians say, ( meaning strength, and I don't even like Italians, lol!)

  6. Hi Mongo.

    Thanks for your kind words, and I do know exactly what you mean at the end of paragraph 1.

    You are of course absolutely right, but I guess the trouble with guilt is it doesn't follow logic.

    You're also right about needing a bit of a dark sense of humour. Probably the funniest moment we've had (related to his condition) is something a lot of people don't understand.

    Basically my son used to self harm quite badly. Anyway, there was one time I was trying to encourage him to spend more time preparing food (to help with his phobias) and we were in the kitchen. Can't for the life of me remember what we were making but I needed some cheese grated and asked him to do it. He kind of looked at me and said he couldn't. When I asked him why he said he was worried about cutting himself. Well I couldn't help it, it just seemed so funny I cracked up and a second later he realised the joke and started laughing as well. We were both laughing so much we had to leave the cooking for a while.

    Day by day - bang on the mark.