My schizo son

The use of the word "schizo" in this blog title

2005-07-30T16:40:00.000-07:00

The comments that people have written on this blog criticising the title of the blog, and comments made to me personally by people who have read the blog but have not posted a comment on it, have made me realise that my choice of the term"schizo" is possibly not a good one for everyone.
So here is some background that I hope will make those who are not in favor of its use feel better.

In the first place, my son is fully aware of the title of the blog; he knows it refers to him; he knew that I was thinking of writing the blog and using those words for the title; he fully approved of its use and gave me his permission and approval for the title before the blog was put on the internet.

I have told him that some people have made critical comments on my choice of words for the title, and he is not in the least bothered about that.

My son and I use the word "schizo" occasionally in the conversations that we have about his behaviour and attitudes, to describe that behaviour or attitude, without any stigma or denigration or put-down or prejudice or sarcasm or any other negative connotation that can be thought of.
It is a term that we use in a very personal way between us. We agreed to use it to apply to any kind of behaviour or expressed thought that he experiences that we have reason to talk about because it concerns me, in the knowledge that we are both aware that his behaviour may sometimes be as a result of a perception that is real and apparent to him and not to anyone else.
He understands that I need to tell him if I think he is doing something that concerns me, knowing full well that he may not be bothered about it at all. He knows that a small part of 'schizophrenia' is perceiving the world in a way that is not apparent to anyone other than to the schizophrenic person alone.
He understands that I understand that there is a need for a person to relate to the schizophrenic person in a way that demonstrates that the 'carer' must feel free, when such a situation arises, to discuss the behaviour of the schizophrenic person with that person, and feel free to explain that the 'carer' does not perceive the reality of what the schizophrenic person does.
The 'carer' should not, in my opinion, ever tell the schizophrenic person that he is 'wrong', or crazy or stupid etc.
The 'carer' should rather explain to the schizophrenic person that the carer understands that the schizophrenic person has a certain perception which is real to the schizphrenic person, but it is not how the carer sees it.
It is the old adage of 'agreeing to disagree'.
Sometimes my son has told me that he has been thinking in a certain fashion, and he has then asked my opinion on his thoughts - whether I think his opinion of a certain situation is a manifestation of his sickness or not. We have come to the understanding that we can respect each other for our separate and differing opinions.
But these understandings that my son and I have about differing opinions of reality have not come easily. On the contrary there has been much conflict, and misunderstanding, and tears, and arguments, and discussions, all occurring over a period of many years.
My son and I use the word "schizo" to apply to anything that he does or says, that we have, after discussion, come to the mutual conclusion that his behavior associated with the subject under discussion is attributed to his schizophrenic condition.
Once we have arrived at that conclusion, it is up to him, not to me, as to what he will do about himself thinking or behaving in the way that has been the subject of discussion - he may decide to accept that his thinking or behaviour is a reality only to him and therefore ought be modified. Or he may decide that I am wrong and that he will continue the status quo on the grounds that my differing opinion is as a result of our two minds simply having a difference of opinion, rather than that my differing opinion is based on the premise that his schizophrenic condition has caused him to think differently from me.
May I just add that there have been times in my life being the father of my schizophrenic son when my choice to help him cope has cost me my business, and has completely consumed my working and free time. And that I have no regrets about any of that.
And that the Carer's Association of South Australia at one stage invited me as a past carer, on their perception that I had been a successful carer of my son, to be on the Northern Country Carer's Advisory Committee. I accepted, and served for two years, during which time they paid for my travelling and accommodation costs four times a year when I went to meetings 530 km away from my home, and also flew me to Adelaide and back, 840 km away from home for Carer's Week, which included an extra few days' motel accommodation because of a lack of connecting flights between Adelaide and Coober Pedy.

If after reading this someone still has the opinion that I have made a poor choice of words well that's just too bad.
I'm not changing the words of the title.
My son and I know what we are talking about and it works well for us, and anyone else's casual outside critical opinion on something that works well for us is not worth considering.

Tele-med conference

2005-03-15T17:48:00.000-08:00

We had the tele-med conference with the Glenside doctor. The end result was that he decided to admit Dary to Glenside. In the next few days the arrangements would be made. Back in Dary's ward room we talked over his stuff in my house - he agreed to my idea of taking his electric frypan and deep fryer from the kitchen and putting them in his bedroom with his furniture and computer and air conditioner that he had saved up for on his pension and bought and had paid for to be transported to Coober Pedy, so I could go on with kitchen renovations. He would 'pay' me $10 a week to store his stuff in the bedroom. During the last few months his part time work for me was partly for cash and partly for my return help in building his dugout. I 'owed' him $900, so we agreed that we would subtract the cost of storage and dog minding from it. If and when he came back to Coober Pedy he could have his room back. There would always be a place there for him if he needed it.
All that sorted out, I left the hospital and went back to my business.
A few hours later, while I was in the dugout away from the summer heat doing computer work, suddenly it hit me that once again Dary was having to opt out of what most of us call a normal life and go back into hospital. My eyes started to water a bit. I began to wonder what he might be thinking about not seeing his dog for he didn't know how long, and also felt a bit sorry for myself that now I wouldn't have any direct family close any more. And I started to wonder what was God's purpose in creating someone like Dary who has to put up with these wretched voices, and have to forego a daily life that most people take for granted. There didn't seem any point in it all, for me. My moist eyes turned into a steady flow of tears, and then came sobs, and then deep wracking sobs. And after that, a quiet calm. God was in control. I didn't understand it all. Only the peace of the knowledge that His plan is always perfect.

Being a relative of a mentally ill person

2005-03-13T23:03:00.000-08:00

My oldest son, a diagnosed schizophrenic, is 31. His name is Dary. He was diagnosed a few years ago. For the last nearly two years he has not had an acute attack. Sure, he has had to battle with voices a lot in that time, but he has been able to fight them and hold down a part time job and save some money and buy a car, and get to like earning money and being part of the work force.
Dary lives by himself in one of my underground homes in Coober Pedy, 840 km north of Adelaide, 520 km away from the nearest big town, Port Augusta. He rents it from me and I live in my other underground home in Coober Pedy, about 3 km away.
He has lived in Coober Pedy a few times, going away and coming back. This is his fourth time I think. It gets a bit confusing after a while. Anyhow, this last time when he came he was not working and hadn't worked for a few years. He didn't want to work. He has a disability pension. He devised a regime of activity that kept him reasonably busy - get up about 8 or 9 and have some breakfast was the way he started his day. He would tell me about it, and I would ask him what he was up to in general.
His time of rising each day was dependent on how he coped with the night before. If it happened that he lay in bed awake for a long time he would have to take an extra pill to get to sleep. That would make him get up late.
These days he is compliant with medication and doctors' visits. For a few months now he has been coming to work for me up to five mornings a week for two or three hours each time. He would sometimes complain about voices while he was working, and he was unable to come at the same time each morning because of the night before pill dose making him get up late. He was planning on building a home for himself with my help. We had started doing the site drawings.
One afternoon his regular visiting community nurse rang me to say that Dary was in the Coober Pedy hospital. He apparently had had a 'panic attack'. I wasn't sure how the idea of him going to hospital came about but it seemed ot was a joint decision between Dary and the nurse.
That evening I went in to see him. He seemed pretty calm He thought he would be in there for a couple of days.
Each day for about a week I visited him. He said he was still having bad voice attacks. The medical team were doing something with his medication dose. It seemed that they were not having any success and it worried me to the extent that I went to the nurse on duty and told her I thought nothing very promising was happening. She got me to speak by phone to the treating GP and after that I felt a bit better.
He was discharged and went back home but a couple of days later had to go back in again, more bad voices. Back in hospital for eleven days, medication altered, discharged, back home for two days.
Then he rang me and asked me to take him back into hospital, bad voices. When I arrived to pick him up he was standing outside the house waiting. He looked strained, was shuffling his feet, and doing his grunts that I had come to know were his vocal efforts to fight the voices. We drove off to the hospital. I said that it wouldn't bother me if he told the voices, out loud, to go away. So he started. Every minute or so he told them to 'rack off!'
They decided to admit him again.
That evening he had calmed down but was pretty drowsy from extra medication and not able to have much of a conversation.
After two days, at visiting time he told me he thought he would be better off down in Adelaide in Glenside Psychiatric hospital - specialist doctors, arranged activities for patients, time off from hassles. I objected. It would mean that I would have to look after his dog, twice a day for I didn't know how long. And once back in Adelaide away from Coober Pedy he might never come back again, and he was going so well recently, the best he had ever been in his whole life.
It depressed me to think that he was 'going backwards' again.
I said, "This is too depressing. I'm getting out of here. See you later." And I got up and left the ward room. On the way out I had to walk past the open door of a room in which I saw the nurse that I had complained to before, talking with a mother and child. I knew the mother. Small town, Coober Pedy.
I said, "Excuse me, could I have a word in a minute?"
She replied," Yes hang on a minute."
Then I told her that Dary was wanting to leave Coober Pedy and go to Adelaide to Glenside, and I was depressed about that because he was going along so well, the best in years.
She said I should look on the positive side - expert medical teams, facilities, more familiarity with up-to-date medication. She said if I'd like to hang around a while, make myself some coffee, the GP would be here soon and I could talk with her.
So I said I would.
I had a hot milo. The doc wasn't yet back. I went to Dary's room (with ensuite toilet and bathroom).
"Hi, I'm back again, I said, "Going to speak to the doc soon about you going to Glenside. Just want to use your toilet.."
After talking to the doc I felt better. I realised that I had once again fallen into the trap of the relative looking at the sick person from their own eyes instead of the sick one's, and becoming depressed at the thought of them going into a psychiatric hospital and not being able to 'enjoy' life like the rest of us.
Stupid me! But easy enough to do. It's just that when things go something like 'normal' for quite a while, it always looks bad when things 'muck up' again, which they will always do with this life-long illness. The GP wasn't telling me anything new. But I had needed reminding.
We talked about contacting Dary's Glenside Treating Doctor from previous admissions. This man was the first and only person in my 31 year experience as a relative of a mentally ill person that told me stuff that made it possible for me to begin to try to understand schizophrenia. When I left the hospital I felt better, knowing that a tele-med conference with him could be on the cards very soon. Dary was right, I was wrong. And I'm not the one with the problem!