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!