Supporting quality of life of person cared for

A lot of the Disability Support Services in the early days thought carers were overbearing, were preventing the person from becoming independent, were a nuisance in a way. And a lot of clinicians, the same, you know, “They’re too involved”. Look, I know there’s some co-dependence, there is definitely some. But that’s not, you know, I don’t think that’s the majority, definitely not the majority, it’s a minority. And I think carers, if they’re given more education and training, they can be more supportive in a more therapeutic way or you know, a way that’s more helpful.

But also the expectations of some clinicians on people, they don’t really have a full understanding of the abilities of that person. Carers are taking up a slack which other people don’t. You leave people out in the community on their own, their quality of life goes right down without a family input. I remember one young man and it used to hurt me to see him, but his family moved away. You know, they’d looked after him through lots of relapses and in-patients times, and he was always clean and he played cricket for the local cricket club, well-mannered.

They left the area and he was, you know, with the support of Disability Support Services, they were making him independent. Just seeing him on the streets, dirty, not nourished well, because he wasn’t spending his money appropriately because his parents used to manage his money. He was with a girl who eventually, I think, she was not good for him. She had a mental illness but I think she was very abusive and yeah, you know, but to see his condition and his quality of life go right down, I’d think, ‘Gee’. You know, like for the family, I guess that was a hard decision for them to make.

What [the family] were actually doing and the input they had and effect on them, Services didn’t understand. They didn’t fully understand. And then, like I said, when I used to see him, it used to break my heart to see the difference. I really think that if they need support, they need support in lots of ways. They need a good three meals a day.

They need support in having their medication. They need support in cleaning. My son cooks beautifully. Doesn’t clean up. He doesn’t, just doesn’t. You know, I’ll go over there and I won’t put the dishwasher on but I’ll empty it, and I’ll stack it and I’ll wipe the benches and I’ll put all loose cans away and like, he won’t do the floor.

So that anti-carer feeling is one that has been moved away from, do you think?

Yes. There’s still a lot, I hear case managers talk and there’s still a lot of ‘the overprotective family’. And I’ve seen what happens with those people when the overprotective family, which I think is overused [by case managers who misunderstand]. It’s a matter of supporting someone to get a better quality of life. When the family’s gone and that support’s gone, yeah, we don’t replace it, and that’s the sad part. Because, just because somebody has a mental illness and isn’t up to doing those things, why should we make them live a substandard [life]?

Even when he was living with his dad I’d go there and he had a room. I was able to go through the back door into his bedroom to bring home his washing, ironing, whatever; take him on outings until his dad’s partner intervened and then I only had to pick him up at the front gate and things were just getting worse. Yeah, so that’s how he’s become more settled. And it’s taken a lot of work. It still does.

And with some of his funding we’ve been able to, he gets a worker that helps him on a Monday. She does a bit of ironing and cooks his dinner. We’ve got another worker that comes in on Thursday and goes through his unit for him, and one that takes him shopping, does his banking. And there’s another one that takes him swimming on a Friday.

So that’s four.

That’s four. So, and that’s sort of only all up, one, two, four, five hours a week, yeah. So I pick up the rest, take him to appointments, whatever, any forms, everything. Yeah, I just, any extra meals.

So those four workers, were they organised through the organisation that you mentioned as well?

They’re through three different organisations, so we’re not dealing with one organisation. We’re getting funding through different organisations. And that makes it difficult too because you’re not just dealing with one. You’re dealing with three.

And how did you find out about those organisations? Did you have to go and find them or…

Word of mouth, just listening. I was, well, word of mouth and then talking to a contact, and then able to get the foot in the door sort of and so it was all word of mouth really and just listening, taking action on it.

Did the psychiatrist or the medical staff that that treated your son, or had dealings with your son, did they ever suggest organisations?

No. And this is, I think this is where a lot’s lacking. I think this is where, I said it earlier. We need one starting point after the GP or the psychiatrist. We need to be pointed in that direction, that they’re, they can assess what we need at that moment, instead of – as a carer we’ve got enough on our plates without trying to find out where we can get help or what help’s available. We need someone to tell us this is available for you now.

And that’s another point, and I’m going off the track, with respite workers. We don’t always get [them] when we want them, when we need them. An emergency comes up, we can’t always get a respite worker with – for an emergency call. If we haven’t got the funding to pay for a respite worker, that’s where it eats into a carer’s finances.

What’s your experiences with respite care?

Zero. Haven’t bothered [with] it, except when I rang up to ask if I could have someone for – I had to go into hospital and have a hernia operation, which meant that I needed to stay overnight and I was hoping to get some help with that. I made a few phone calls from that and then, in the end, I never got return phone calls and I just gave up. I get very annoyed at not getting responses back again and I think, ‘Well, if you can’t bother responding, I can’t rely on you to do what you’re doing’, and in the end, I just got the next door neighbour to pop over and make sure that she was fine.

I took her medication with me and she stayed with me until late that evening and I got her in a taxi to get her home, so I knew she’d go door-to-door, so that was fine but the silly thing is, is the next morning, she’d taken home my wallet and my cigarettes and everything and I’d got up, she’d gone home and she’d, remember, she gets sedated and she’d gone to sleep and I’m ringing and ringing because I’ve got no money, no wallet, no smokes, the smokes are not important but I tell you what, I couldn’t even get home because I didn’t have any money [laughs] and I didn’t have my bus ticket or anything.

In the end, I just went to the bus driver and I’m – I was still sore, I can’t cough, just had my hernia done and I’m thinking, ‘Oh, I want a cigarette, but I want to get home. No, I just want to get home’, and in the end I just told the bus driver, I said, “Just got out of hospital”, I told him [the truth]. He says, “Oh, come sit down mate”. [Laughs] I ended up getting home, hey. And I got inside the house [laughs] and she’s still sound asleep and I woke her up and I said, “I’m home” and she goes, “Mm-hm” and rolls back over.

I made a cup of coffee and had a cigarette and she got up about two hours later, she’d forgotten that I was in hospital. Simple as that, totally forgot that I’d been into hospital and had the operation and so, you can imagine what would have happened if she had of decided to cook something or something like that, and then gone to sleep.

So the fear of something going wrong just stops you from doing so many things, you know, but that was an example that you can laugh now, because nothing went wrong, but she could so easily have done something like that and so respite care, quite often, isn’t about needing a week off or a weekend off or an away or anything like that, it’s about just those simple little things that I need help, because not everyone’s got family that are close by. Not everybody’s got neighbours that will pop over for a few minutes or anything like that, but you need to go for a few hours to do A, B or C.

Can we just have someone pop in and just babysit? That’s all you want, is a babysitter. Like I said, it’s not about dishing out medication or anything, it’s about a safety issue. Sure, you could do down the track of, you know, ‘Are they unstable?’ and stuff like that, well, like in my wife’s instance, it’s not, it’s just about her own safety for silly little things like leaving on the element and stuff like that.

So, yeah, to have that facility would be great but it’s not there that I’m aware of and if it is, why haven’t I been told about it already and these are the frustrating things that carers go through on a daily basis. It’s the simple things that aren’t there because everyone’s trying to get the big picture stuff out of the road like, yeah, take a week off. I don’t want a week off, I want two hours off so I can go to the dentist.

I want to go back to work. I hope to God and pray that I can go back to work. I don’t function without working to my full capacity. I need work: one, to have a purpose; two, to have a better income. It’s quite a challenge living off a carer’s pension. When I was working and caring I did find it extremely difficult because of the symptoms of the illness. So if it’s part-time so be it. But yeah, I want to work. So I’m looking forward to being able to get back into the workforce.

And in fact you’ve both worked all your lives.

Correct, and that’s a huge thing with my husband. That’s his purpose in life and he’s lost that. So that is a huge, huge thing. Work is very important and I guess if we’re going to go down that track, informing employers, businesses that it is okay to employ people with mental health conditions. They can be very, very productive workers. They do have lower sick days and what have you because they are so determined to do their best for their purpose.

Yeah, particularly when half the time people with a medical condition, their purpose is work. Some of them are unable to hold down relationships and so they don’t have a purpose within that realm, but they do have one within work life.

Were his tutors and lecturers helpful?

He didn’t want to tell them about anything too much. He did go to the student services and they sort of said that they would, he never told, I don’t think he told his tutors or lecturers anything much, but the student services people, they put him on to someone who, I think he was able to get a bit of extra support [from] if he needed it. But he never really needed it as such, because it was, well, we made sure it was manageable, what he did, and he was always paranoid about getting things in on time anyway, so it really pretty much worked all right.

The only thing was that he actually through work and, and that was when he got into some work, that was the hard part. Because work was always the stresses of having things done quickly, and he was not able to do it quickly. Like he, because of the sort of obsessive-compulsive traits that he had, he would try to do things over and over and he would really want to make sure it was all right, so he whatever he did was obviously perfect, but not quick enough for a lot of the things.

And so he tried a few different jobs, and one of them was the [work place] and he got to be a [occupation], that was one of his – I was so impressed, that was after all this illness, he managed to come out of it and apply for this job. He went through umpteen tests, they put you through all these computerised tests and they interview you and all this, and he got this job. And they promised that they would have six weeks of induction and all this help, and it was really pretty limited.

And he thought it was going to be much more support than it was, and of course, because he was not very fast at doing things and picking it up fairly quickly, and worried about everything so much, that he was slower probably than the others. And then a lot of the work involved there was very, very stressful, and he got very, very stressed.

And his grandmother died and a whole lot of things happened that were terrible, and he started breaking down. And he got a stutter, a really terrible stutter, sort of a nervous stutter thing happened. And he went and told his team leader that he had a mental illness, and …

Did he tell you that he was going to do that?

No [laughs].

If he had told you, what would you have said?

I would have said don’t do it. Because she was only a really young team leader, too. It just compounded all these things, that she’d never done, been a team leader type person before, so she reported it to someone else. Whereas somebody more experienced probably would have just sort of said, “Oh well, we’ll see how it goes”, or something. But she felt she had to tell someone else, and then they drag him in for an interview thingy, and then it was all sort of, “Oh, but we don’t think you’re coping, and do you really think this job’s for you?”

And he said, “Oh yeah, it’s good, it’s okay”. He didn’t want to go, he didn’t want to give up on it. But he just got worse, and they moved him around a little bit and they just weren’t very supportive. And because he was on probation, he was not – the union couldn’t even do anything much. So the fact was that he probably didn’t get, well, I suppose he got the sack, he was told, you know, “That’s it”, at the end of it.

But it was very traumatic, that whole period of time, for him. And I think if he’d just said he found it hard, and didn’t say anything about it being a mental illness, I think he might have been able to sort of get through it. Probably, look, it was probably too stressful a job for him anyway, but now, we sort of look back and I don’t think he’d be able to, he wouldn’t have probably been able to cope with it.

Did that set him back at all?

Yeah, yeah, he wasn’t too good after that, felt very low self-esteem and all of those sort of things, so it was pretty bad for a while. Then he got a few jobs, he’s had a few odd jobs, and now he does casual work while he’s just part time, very part time, and has a bit of Centrelink help and Austudy and he’s doing a PhD, so [laughs].

So he skipped Masters and went to…

Yeah, he skipped Master’s, he just did Honour’s and went straight into PhD.

That’s an extraordinary testament to his intelligence and scholarship.

Yeah. Oh, look, that’s right. And perseverance, and it’s those traits of mental illness that actually make you – can actually be beneficial. Because all the being, you know, motivated and …

Scrupulous.

Yes, all the things that were, some of them can be, in their worst situation, be bad for you. In this situation, he’s really, it keeps him motivated, it keeps him doing his work, and he loves it.

Look, job agencies are fairly useless. They just get all of the government money for looking for work and I don’t think – the last agency he was with I said, “What are they doing for you, [son]?” Because I’ve done this sort of work myself before. And I said, “Do you have an employment plan?” He said, “What’s that?” I said, “Well a plan, a plan of action”. And he said, “I don’t think so”, so I wrote an action plan up for him. Okay, resume, tick it off when it’s done. You know, job seeking, showing him how to apply for jobs, showing him where to look for jobs et cetera et cetera, and it was an action plan with about six things on it.

And I said, “Take that in with you and ask them whether they can…” – and I put who was responsible for what and I said, “Take that in with you to your next meeting and ask them if they can draw up an action plan like that for you.” And so he took it into his next meeting, came home and he was really angry. And I said, “What’s the matter?” And he said, “They exited me”. And I said, “Why?” And he said, “Because I gave them this and they said, ‘So you’re not happy with what we’re providing? You can go elsewhere'”.

Now, they’ve got all the money that the government had paid, when when job agencies take on a client they get a lump sum amount of money, then you’ve got so many weeks before – to do all of the stages of assessing the person and the intake work and then at the end of that time you get another lump sum. When you find them employment you get another lump sum.

So they’re getting all this money and when they get to a certain stage, once they’ve been with them for a certain number of weeks, they have to refer them to another agency. So all that’s happening with him is he goes to an agency, they tweak his CV, right, they get their intake money, they do an intake assessment, he gets to that stage, he’s been with them for too long and they refer him on to the next one. It’s…

Handballing him.

It’s ridiculously frustrating because he never ends up with employment. They’re supposed to work with him and an employer to overcome the barriers of his legal history, his mental illness and his learning difficulties, you know. And he’s got qualifications there that they should be able to use and he’s been – when did he come back – must be two, three years ago, two years, from [interstate city] and he’s been with probably one, two, three, four agencies.

So it’s really – that job that he really liked where he had to fill out the form and was very honest with them, that was the last time he was really happy at work.

Yeah. Yeah, he hasn’t had another job since then.

As far as my role as a carer goes and I speak to him a lot, nearly every day. I’ve helped him quite a bit with his money, with sorting out his finances and budgeting and learning to live on his own [sound of pet dog snoring faintly in the background].

Is he financially independent?

Yes, he gets the pension, Disability Pension, and that pretty much helps him. I think mum and dad might give him a bit, but he I think mostly it’s his Disability Support Pension and I think it would be great for him to work a bit but I don’t how that would look and how that would work out.

But, yeah, I feel like my main role as a carer has been more to support my mum, it’s been a bit, a bit about doing things for him. But certainly not emotionally, because he doesn’t want to talk about anything and I really wanted to try and understand what he was going through and I wanted him to talk to me about it. But he just always used to fob me off and say, “I don’t, I don’t want to talk about it and that isn’t going to help anything”.

And so that’s certainly been part of the journey for me, is just sort of accepting that I’m not going to really understand what it’s like for him. But I really want to be his sister, so it has been a case of trying to work out what we can do together, because a lot of things that I would do with my friends he doesn’t like to do. Like going out for a meal, or going out to the movies, or watching tellie. He doesn’t want to do any of those things, so it’s sort of been a matter of redefining what our relationship looks like.

And so have you found other things that you do together, that don’t, that don’t look like that or…

Not really, not really. He comes over and we might sort of have a little catch up, but we don’t do a lot of things together. The only time I really do things with him is when I’m helping him with his money and budgeting and helping – looking at if you can save money on bills and that sort of jazz. That’s the only time when we really spend any time together.

I’ve thought about this lots of times, what will happen when we’re gone. I don’t know. He’ll probably end up on the street somewhere. No, actually we’ve made provisions so that if we both go, if I go first, my husband would look after him. Not look after him but he’d be there for him. If we both were to die, the state trustees would have in our will we’ve left provision for our properties to be divided amongst the children and [son]’s, a portion of [son]’s will be to buy him suitable accommodation near where we’re living, like a unit or something like that.

So we’ve provided for them in our wills so that he’s, you know, looked after, he’s got somewhere to live. But god knows what would happen to him apart from that. He’d have a home to live in but that’s, sadly I don’t see things really changing with [son]. He’s 32 years of age and I don’t really see that he’s going to change significantly over his life. I don’t think he’ll be able to get work unless somebody really special comes along and is willing to give him a try. And that’s frustrating because it would be nice if he was out of the house and working a couple of days a week. It’d be good for him, it’d be good for me.

Well, I’ve only been to a few carer meetings but some of them came from East European – they are still not quite good with the English and everything and they were getting older and they had sons or daughters that were getting really difficult in the home situation. So you can’t expect those people to have to look after these and if that caring situation was done much earlier like I think they recommended and they said it was the right idea to try to do that early rather than later.

And somebody had supported them in doing that and the accommodation was available for that person to be – because a lot of them are also obviously very concerned and they come from countries where you have to stick to the family, you know. You have to keep everything in the family but that’s not necessarily the right – if there were the proper accommodations available that they would be happy with it would help the carer as much as the patients. And also with the thought of you know when older carers often tell me that they feel so worried about when they’re gone. Yeah, exactly, because they have to make some – and if they wait for that long then it gets more difficult apparently. That’s what I’ve learnt anyway.

I think our government needs to take more responsibility, increase funding, definitely start looking at building suitable accommodation for the people who need it, so to give the carers peace of mind that their loved ones will be looked after. I hope that my son passes before I do and I guess that’s because I hate the thought of what will happen if I pass before him.

That’s how we think. That’s how we live our lives a lot of us, we worry all the time what’s going to happen and we just need to know that they are going to be cared for, they’re going to be cared for properly and decently and and have some dignity and we just need accommodation built, we need the staff, we need the funding for these people who are vulnerable. I don’t know where we, other than sort of make the powers that be more aware of it, aware of what’s happening in our country with our loved ones.

And I think you mentioned earlier a concern about as your son gets older about aged care? Could you talk a bit about that?

Yes. Where we live, if he wasn’t able to care for himself with the services we’ve got in, if it came to the point and I couldn’t care for him, but there is nothing in our area suitable for him, other to go into aged care. So, he would be living in an aged care hostel and I don’t think that’s appropriate. He needs to be, even though he’s 50, he’s still not an older person and and so we need more accommodation available for that the younger aged groups, where they can’t be cared for at home or be independent.

Then in terms of your son’s treatment with his situation what isn’t being addressed for him and… His personal, his life really. You know how he lives his life and what he’s doing, how he can get out of the house. His self-confidence, got very low self-confidence or that sometimes comes out as a question – and get him out of the house. Trying to get him involved but actually coming there and doing it because just saying, “Ah, these things are there, a building, you can go to this place, you can go that place”. But if he doesn’t come out of the house that doesn’t happen. So it’s more a lifestyle help he needs.

And maybe there are better ways of having accommodation where that is sort of provided with, together with other people but still having some independence. That’s something I’ve been spending a lot of time trying to figure out too. How, especially in the future as well how he can – what best type of accommodation would be best for him. And I talked to my other son too you know he always thought he should be somewhere with other young people. But not, but with a bit more self-management so they still have their own place. It’s a bit, I see it a bit like they’ve got all the lifestyle villages for older people where you can live and you still have your own accommodation but you’ve got all the support around you. Something like that and I know it probably doesn’t exist and it might be too expensive. But I’m even willing to pay you know extra for something like that but again it’s something that I, we have to just try to figure out by Googling [laughs].