Sunday, March 13, 2005

Being a relative of a mentally ill person

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!


At 6:30 PM, Anonymous Anonymous said...

I know what's have a problem with the mind, I was diagnosed with some kind of depression but I think it was really borderline pd... the doc has no much more time to evaluate me, I think! When you have such thing, you feel night and the empty streets as monsters trying to crush you down, you feel sad and only thinking in the darkest, sadliest and horrendous things. I was an unusual perception of the silence of the night and I usually wandered near the city cemetery with some auto-destructive thoughts running my head. Now I was a little bit treated, but I think my remission was due merely to time, cause I initially received a wrongful diagnosys. I am from Brazil and actually I study physics, but I have a huge interest on mental illnesses and some psychology. I think your blog is very very excellent.

At 1:28 AM, Anonymous Anonymous said...

iam surprised that you take a rent for your house from a son who is mentally ill and so unable to work.It is shocking ,no wonder the prognosis of mental illness is much better in societies that do not segregate and isolate but help reintegrate the ill.
What kind of a father are you?!!

At 3:54 PM, Anonymous Anonymous said...

thirty five years i have schizophrenia. it started in adulessense. martinis make me feel worse when the crash comes. its a good thing i am on pension. why do schisophrenics not talk to the toilet when visitors and family all gone from house? On camera they never talk to tiolet when house is empty.

At 12:12 PM, Anonymous Geoff Sykes said...

In reply to "anonymous - 1.28am".

You ask "what kind of father are you?"

Well, I don't know who you are nor your background, but I do know Gary and I will try t answer your question.

He is a loving and caring father who has been to hell and back - not just with Dary but with other personal matters also.

When he arrived in Coober Pedy he had nothing, just the clothes on his back. He'd been forced out of the family home by a vindictive wife and legal system, he had lost his family, he was alone, he was ............ I wont saying any more, just that he was destitute and penniless.

Yet he has pulled himself together, he got off his arse and over many years has built a couple of homes, one for himself, one for his son. Yes they are basic, they are holes in the ground, many of us here in Coober Pedy live in holes in the ground - but they provide shelter from the elements.

Yet with all this pain, and bugger all money, he produces this paper, free of charge, for you to express your views in, even if they are negative and poorly informed.

He has started a small business, a "Fodder Shop". He sells grain and hay and pet food and other litttle knick knacks. It's not a big business, but he provides a much needed service to those of us here in the middle of the desert who feed the native birds and our own pets.

He is an active member of our community, he gives freely of his time to others. e.g. just 2 weeks ago he took the local football team on a return trip from Coober Pedy to Roxby Downs. So what you say?. This is a 1000 kilometre round trip, he was asked just the night before to be the driver (no forward planning - he was asked, he said yes). The trip started at midday Saturday, finished at 4.00am Sunday - included making sure all the players got home safely by dropping them off at their dorstep, not at the pickup point (local bus depot). Thats right, 16 hours on the road (with a 2 hour nap in between). Straight down, straight back - all voluntary.

He did this for free, he paid his own expenses, took his own swag (in case they had to camp out - Gary doesn't have money to pay for staying in a motel).

He is a regular church attender.

I could give you more examples of how this man cares, feels sorrow, feels isolated from his family, but I'll leave it at this for the moment.

Re charging his son $10-00 storage fee. This is obviously a token gesture to make Dary (yes, I know the lad) take some responsibility. I know that the same $10-00, and much much more goes back to him. Dary does have a mental problem, but he is not stupid. As Gary has stated, he has saved his money to buy a car, the coppers have given him a driver's licence. The lad is not stupid.

YOU sit back in anonymity and cast stones. Shame on you. I'll wager you don't do anything for your community, I'll go as far as to say you probably haven't even experienced half the problems Gary and Dary have.

I don't want to know your name, but before you cast stones in future consider the circumstances of the person you are casting them at (Gary has explained a lot of his pain (not all, by far) - he hasn't told you/us the postive things in his life and the work he does for his/our community - he is too modest to do that), consider what you do, consider how you would react.

Do you do any voluntary work? Do you have a sick child that you have had to care for for 30 years? Have you been forced to leave your family ?

Kindly consider these points BEFORE you speak ill of someone in the future.

At 12:07 AM, Blogger Barb in America said...

I just recently received news from my brother in law that he has schizophrenia. I've been wondering if it was demonic obsession or possession. you spoke about a grumbling noise that you came to understand was his way of keeping the voices inside. my brother does the same. I thank you for posting yours and your sons life online to help whomever. it has helped me to believe in his condition. I was moved not only by your story, bu that of your friend. Good to know you're in good company. my heart goes out to you, with all of your interior sufferings.
May God bless you and your son!
Peace in Christ

At 2:53 AM, Blogger Gazza said...

Dear Barb in America,
About schizophrenia and demonic obsession or possession - some friends in my local church convinced me that my son's schizophrenia was because of demonic possession. He was having an acute attack.
I arranged for him to go to stay at a Drug/Alcohol rehabilitation 'farm' which is affiliated with the church.
I left him there and rang every day, expecting to hear the news that they had cast all demons out of him and that he was well again and was starting on a rehabilitation program. Day after day I rang. Day after day thay had the same news - no improvement.
Finally they told me that they had tried all ways of releasing him from any demonic influence without success, and had come to the conclusion that there was absolutely no reason to think that his illness was in any way at all connected with anything to do with demonic influences.
The plain fact was that he was sick and needed medication.
So from there he went to the main psychiatric hospital in the state and was admitted, treated, prescribed medication and was released when he was well enough to be able to cope without hospitalisation.
My conclusion was that my friends, though well meaning, really didn't have a clue, and were giving me bad advice, based on their own interpretation of the scriptures about Jesus healing the demon possessed.
As with most things, each individual case has its own identity.
If you are concerned about your brother's illness being related to demonic influences, my suggestion is that he could be referred to experienced Christian workers for them to assess him, like I did with my son.
But don't be surprised if they simply say that it is nothing to do with demonic influences and all he needs is medical help.

At 1:34 AM, Anonymous Anonymous said...

The $10/week wasn't for renting the whole house - it was for using part of the room for storage of a couple of appliances and for looking after a dog whilst he was in hospital - I think that is a bit much - OK if he was renting a house off him. It's not costing him anything. Couldn't imagine that the son would be able to pay when in Adelaide in hospital and that sick and as for learning some responsibility it sounds like he has to get better first! Lets stop feeling sorry for Gary - Gary will sow what he reaps - When Gary gets old and sick I wonder if his son will charge him for renting space in his house for his bed or something. I hope he thinks about this!

At 1:59 AM, Anonymous Anonymous said...

This comment has been removed by a blog administrator.

At 1:55 AM, Anonymous Anonymous said...

The title says it all "My schizo son", yep for better or worst he's your son.

To be honest I got the impression that you were more worried about the inconvenience to yourself - understandable and probably the normal reaction of most parents.

As the parent of a handicapped child (32) it took me a long time to realise that we have to accept the cards we are dealt in life and do what comes naturally to any parent and that is to do the best we can for the child.

Hang in there mate and do the best you can, after all if you don't help him - who will?

At 5:21 AM, Anonymous Anonymous said...

I would just like to say I do not know Gary or his son but I feel to attack him because he charges his son rent ( if you can call it that) is just terrible. My son is 21 and just recently diagnosed as
schizophrenic. He longs to work and to pay to take care of himself. At this point he is unable to do so but when he becomes well enough and is able to work I will want him to pay his rent, electric, buy his own food. I am not rich but I am not poor either.Could I do without my sons money -- YES. Could my son do without paying -- NO. He needs to feel as though he is taking care of his self and the only way to do that is to let him have all the responsiblities and freedoms that I not being sick have.I learned from a great doctor that I needed to stop babying my son and let him be a man. That was the only way for him to get better.

At 9:13 AM, Anonymous Anonymous said...

As soon as you think there is something wrong with your child, get him to talk to a Dr. no matter what age they are. Do not leave it. We were not listened to and our 30 year old got worse and worse. Even go to the papers to get it seen to. Often the Dr`s . think it is the parants at fault and often it is, but if you the parant knows something is wrong, insist to speak to Dr`s. Anonymous

At 1:04 AM, Anonymous Anonymous said...

Hang in there Gary. You are not alone. I understand how it feels to be the father of schizophrenic son.

No matter all the criticisms that you receive. YOU ARE GOOD FATHER. Don't allow anyone to destroy yourself esteem. I can feel your pain.

I am a black girl with schizophrenia, bipolar and OCD. Everyday, when I walk to class and I am not reading, I know I am going to die at a young age.

The side effects of the drugs are terrible. I hear voices that torment me badly. At a time people laughed at me and said all types of mean things about me. Nevertheless, some people have been nice to me.

I hope you continue to keep a blog. Don't give up because of your son's illness. Please don't. I am begging you. Your blog inspires me and so many others both the sufferers and the families of the ill ones.

I am fortunate that I have a job and I am graduate student. It is not easy for me. I am able to manage my illness, but I go home and I face the evil demons.

My family support me, but I feel as if they pity me.

I guess it is a relief that I am going to live a short life so that I will not suffer for a long time.

At 3:26 AM, Blogger jessica said...

i read your post and i can understand how you feel.. my son was dianoised at 18 and hes 30 now
i will never give up as "angey' as he makes me at times- we just had to have him taken to the mental hospital tonight and I pray that maybe he will get the right medication this time- I have never thought that my child would have this- I want my son back!
For now I need to have others to talk to, to understand what im going thru- ther isn't too much help here-
please contact me
Thank you all so much
and God Bless my son and yours


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