Impact of caring on relationship with person cared for

The only thing you can really change is yourself being your own attitude. So it’s really a mindset and sometimes you need perhaps counselling to do that. In my position I’ve probably had training in it anyway, you do forget things but, you know, I’ve had some basic training in [profession]. So it’s still a hard thing to do, you know, is to change your mind about how you look at something.

So if you see yourself as a victim I think you will be a victim of this sickness. The whole family will be a victim of the sickness. But once you just shift, and say well, ‘I don’t want to be the victim, I’ve got some life, I’m entitled to my life, and much as I love, care and support the person in my family who has this illness I still owe it to myself and to the rest of my family to be well and ensure that I have as happy a life as I can’. Of course this, you know, takes away that sense of happiness because it’s with you every single day but how much it takes over your day is more in your control and probably, you know, doing those things that, that do help your wellness.

I know they’re talked about a lot but they’re really, really true and that is involving yourself with something that you love doing. Whether it’s your job or your activity or your family or sitting by the fire and knitting and seeing enjoyment in those everyday things, and trying not to be prepared for crisis. As I said before you need to be prepared in some ways but mentally you probably need to, it’s sort of the letting go, a letting go.

Especially when someone’s become an adult and they do have to take responsibility for their own life and you know that if you’re not there to be hovering around all the time when you do pass on, pass away they’re still going to have to be on their own, stand on their own two feet. So really you’re doing not only yourself a service but the unwell person a service to actually get them to stand on their own two feet. Because you can’t really save them. That’s probably all I can say.

It’s a whole thing about letting go I guess as a carer and which is what these workshops, I think, were useful for as well was talking about listening, maybe trying to understand but it’s difficult to understand if you’re not actually living it. Accepting what’s happening and letting go of some of the expectations that you might have has been part of that journey.

Probably harder when it’s, I think, a young person. When you’re sort of talking about someone being an adult but they’re hopefully they’ve learned a few things along the way. But you feel like a teenager is still learning and still needs your input and you need to be guiding. And it’s probably part of the normal thing of teenagers growing up and parents needing to sort of let go of what they’re expecting.

But I think in a situation where someone’s suffering from depression and anxiety, there’s a bit more letting go that needs to be done along the way as well. And I guess that’s starting to trust or feel that you’ve done what you can do. So we’ve done what we can do in terms of getting her help with a psychologist. And then to be able to just try and get on with day-to-day life and not to get too upset about what’s happening day-to-day.

It’s like a strange … what I hear is like a paradoxical mixture of letting go but also at the same time, putting in a lot of effort to provide a certain kind of support so that she can be let go, you know, to make that possible? And also getting on with your own routine.

Yes, and that’s important too for carers as well. And I think that was also part of the workshop for carers, was, as carers, we do need to get on and do the things that we would normally be doing and not be totally focused on the person with depression. So they were useful tips and strategies for us as parents. And I think even one of the examples was, I think they told the story of someone who was depressed and actually, that’s right, I think I saw a video of a woman who was now a PhD psychiatrist herself or something like that.

And she told the story of how when she was 18 she sat on the couch for two years or more, was suffering from depression, did nothing. But she said eventually she got up off the couch and she went and did things. And is now very successful. And it was really good to hear that story, to hear a story of recovery and for someone to say what was going on in their head. They didn’t really understand but they just needed that time. They needed time to go through that. So that was helpful in accepting what was happening for our daughter.

I never expected I would be still looking after a grown up child at this age, or a grown up man at this age, at my age, at his age. I feel as though I gave him life, but it’s been wasted [cries]. That opportunities … there’s a fine line between a child taking off and growing up and forging their own life, and for some reason, he hasn’t been able to do that. And I didn’t think that I would’ve been still taking care of him.

And my other children make me feel guilty at times, because they say, “Well, if you didn’t have him around, you could come and live with us”. Or, “If you didn’t have him around, you could travel. If you didn’t have him around, you’d be doing something else”. And that’s not what the reality is. I do have him, and it’s not as though he needs me, I can travel, I go overseas and see my daughter overseas. [Laughs] But I arrived in America once and he rang me up and said, “You have to come back because the cat’s sick” [laughs]. And so there’s always, in the back of my life, I have this person that I’m responsible for.

I think for me, my recovery ‘journey’, it feels funny saying that but I think it’s trying to deal with what it’s like to not have control over this situation. I mean, I love him more than anything, but I think I have to acknowledge that I can’t control his illness. I can’t control the decisions that he’ll make, including if one day he decides to end his own life. I don’t have any lines in that play. That’s his decision and it’s a very big thing, especially when you’ve been living alongside it from such a young age. It’s formed such a strong part of my identity, this sense that I have to protect him at all costs. It’s a very big thing to start peeling that back and acknowledging that you can’t.

So I’m doing some work around that. That’s a work in progress. I think it’s also just appreciating how lucky I am to have, you know, my mind, such as it is and to be happy and healthy. And it certainly changes your outlook when you’re living so close with someone who doesn’t have that luxury all the time. So I think it makes me a lot more joyful in my everyday existence. And yeah, as I said before, just contributing to there being some change in the sector, I think. Then at least it feels like these shitty experiences have been worth something.

I think I feel like his mother, not his wife, at the moment. Yeah, and you haven’t got the rights of either [wind blowing]. Like I only learnt yesterday, his diagnosis. No-one’s talking to me. I don’t understand the diagnosis. He’s afraid, scared, and you feel like his mother. You comfort him: “It’s going to be okay. I’ll sort it out. I’ll get this form filled in, and you just feel like his mother”.

You know, he was always my rock. Yeah, okay, I go fight with the hospitals, fight with the paediatricians, fight with the psychologist, fight with the schools, you know, doing the right thing for my grandchildren. But, at the end of the day, I could come and put my head on his shoulder and he was my rock. It didn’t matter what life chucked at me. He’s there. I can put my head on his, my shoulder. We can go to bed, cuddle up, and I’ll worry about tomorrow in the morning. But that rock’s not there anymore.

I suddenly feel like he and I have reversed roles. Yeah, he’s one of the kids, and my rock’s shot through and, at the end of the day, there’s no rock to lean on. There’s no rock to say, “God it was a shit of a day, wasn’t it?” You’ve become like his mother. Yeah, and there’s no-one to talk to. No-one talks to you. No-one tells you anything.

It’s a bit like a mother when a child gets to 16: yep, you don’t matter anymore. The law sees it that way. I’m not saying you do it with people, but the law is geared that way. And yeah, it’s affected our relationship greatly, particularly when the psychiatrist that won’t speak to you. The man they’re talking to, that’s not my husband: ‘Talk to me. I’ll tell you what my husband’s like. That’s not him’.

Note: Section 346(g) of the Mental Health Act 2014 (Vic) enables disclosure of information in general terms to a friend, family member or carer, providing this is not contrary to the views and preferences of the person concerned, while section 346(h) enables disclosure of information to carers where this is reasonably required for determining the nature and scope of the care to be provided.

Well, I’ve done various courses, I think what’s called the [course name], or something with a name something like that. I’ve attended anything and everything that I could to try to understand what’s going on. And the thing that I’ve always noticed, there’s no men. And when I say none, maybe one, maybe two, and that’s all, all the rest are women.

And it’s the way men handle it, it’s much easier just to go to work. And this is what a lot of men do. There’s a very high government official in [interstate], his wife rang me and because I’d written that’s what it’s like, and she wanted to talk to me about that. And she said, “He just won’t accept it, he just goes and works and comes home and virtually ignores it, as if it’s not there”. But it is there and a lot of men are like that. And the way men handle it is to get involved with things that they can control, and at work they can control that. So you’ll find them working very hard, and it makes them feel better as well, that they’re, they think they’re doing their bit by working and providing while the wife is at home trying to look after this much more difficult problem.

So I think it’s a sort of fix-it mentality. Men believe that, whatever’s wrong, they should fix it. And you can’t fix it, that’s the problem. So, well, “I can fix what’s at work, but I can’t fix this, so I’ll work and fix that”. You just can’t fix it and it’s just something you’ve got to adapt and learn to live with. And the most difficult one I’ve come across was one of these, when I was doing the – I forgot what it’s called, [course name] or something like that, and there was only one other man.

And that man sat there like a zombie day after day, and one day I just had to talk to him and say, you know, “What’s wrong?” And he told me that what had affected him so much that he had this beautiful daughter who was very intelligent and she got schizophrenia and she would come up to him and pound him on the chest and say, “How could you have let this happen to me?” How terrible. And he said it just destroyed him. He couldn’t fix it.

Because before my wife died, he was just a sort of normal happy sort of person you know. We’d go to the football and you know do all the things that you sort of do, go on holidays and so on. But since the, since the diagnosis, yeah there is a change. He’s not happy or cheerful or whatever. He seems to be fairly, I guess morose is the way that you’d put it. So that’d be the major change. And he’s not interested necessarily in doing something. He likes to do things. I mean if you ask him what he’d like to do really, what he likes to do on the weekend is go for a drive and he always wants to go to the same spot. You know he’s not, doesn’t seem to be interested in going somewhere else.

It’s just that he’s not very communicative and I don’t know, I really don’t know why that is. I suppose I’m not the greatest communicator either so it could be a bit of both but if I, you know, really you ask him a question and really he’ll just say, “Yes”, “No” or whatever and “Yes, I’m okay” and so on. And I put that down to it’s either the medication or the illness. But because he doesn’t behave as he sort of used to once. So that’s, I don’t know if that’s typical of the illness but it’s what I’ve found that it’s very difficult to communicate with him in any meaningful way if you like.

But I’m not sure what, maybe that’s something I’ll take up with the carers and psychiatrists to see that, maybe, I suspect that it may very well be a feeling of, a sort of self-worth thing, you know what I mean, that it’s, what do you call it, the stigma attached to mental illness. That’s what I suspect it probably is.

I think when we’re looking back it’s more like at the time you don’t realise and I remember it was a carers support group meeting and it would’ve been about three years, that three-year period down the track, and a man drew a curve on a blackboard or a whiteboard and it was ups and downs. And he talked about the process of grief and the different feelings that entails. And when he wrote on these bumps these different feelings I thought, ‘Wow, no wonder I feel like I’m on a rollercoaster, because I’m going through all these different feelings, not understanding why’, and it was actually a process of grief.

So once I realised it was a natural process to a situation which I wasn’t dealing with very well, I started to realise what I needed to do for me, or to learn, for me. And it took a carer to just enlighten me to the fact that we are going through a grieving process, the same as if we had lost someone and it was harder because the person was still there. So we’d lost someone as we knew them and we had the person was still there with different behaviours which we were trying to come to terms with.

And I guess for me it was a matter of, once I realised the changes that were going on for the person I cared about and the changes that were happening with me, it was a matter of accepting the fact that things could not go back and learning how to deal with what was happening now and in the future. So that was the beginning of a learning curve for me. I guess once I’d accepted this illness, which was a big step – accepted that illness is there and it’s not going to go away – what I hoped for was the person I cared about would accept the fact they had this illness and work with it for the best quality of life.

Very vulnerable, a lot of people can influence them. They’re being used a lot too I know, [daughter], she has been used by, like in [overseas country] say, money-wise particularly, easily influenced for the wrong reasons, making decisions. You know, you can say 100 times that “It’s not a good idea, don’t do that”, they’ll go and do it, like we bought her a property, a house and I said to her look, I wanted her to have a house. So she was moving from place to place to place – “Oh God, you know, I wasn’t happy there”, moving there, moving you sort of and I said, “Look, we’re tired …” – and she’ll always have a property to live in. It’s a lovely place. In six months after [Marta’s late husband] died she sold the house and I didn’t know about it either. Oh, I was devastated, you know. Going past the place and seeing it for sale, oh God, it broke my heart, it did. Since then she’s been homeless at times and you know, back home and what have you, so.

Yeah, that wasn’t necessary, but again, making promises to buy the boyfriend a car and all this sort of stuff. Yeah, somebody was, saying “Oh yes, get rid of It”. So they’re the things that I find difficult. You work so hard for her to make it better for them so they have a decent life, and even there I was still always looking, every day I would look in the real estate thinking, ‘Oh maybe a little one bedroom flat, what if I’m not here’, she’s you know, just somewhere where she can live permanent. I never had an address, I never know the last few years where she was and sometimes no contact, sometimes I didn’t hear from her for a year and then it’ll be there every day for weeks. So there’s never an even keel.

What do you think the importance of accommodation for your daughter would have been? Because you wanted to buy her a flat.

For me that would have been the most important. To know their security, for her to have a place to go to at all times, so she doesn’t have to be sitting on a park bench out there with just a shopping bag next to her and …

Vulnerable.

Vulnerable. That, that was one of the biggest things and the saddest part of it. There’s one thing when she did that the first few times, I was, ‘Oh, she’s taken that away’. Now that I won’t ever have to visualise that again, her sitting in one of the, because you can see, I see them out there a mile away, you can pick them. You know, I always had visions of her one day when I’m not here, that’s where she’s going to be and there’ll be nobody there for her. That has always been my thought and that’s the first thing that came into my mind after the accident, was she released herself from all that. And in a way she released me too with that pressure, you know.

Sad as it was, but on the other hand I sort of feel it was her choice, decision, but all that sadness, that part of it has gone, that sadness, all that used to follow me around as she was getting older and like I said, ‘Oh that beautiful person you see’ and then to that one, that’s now that big, and all grey hair, very, very sad.

But I don’t see myself as a – I guess I’m a non-current carer, much like it’s a non-current illness at the moment. So, no, I don’t identify as that anymore. I think I did even for a long time afterwards. I just really struggled in our relationship to find my place again, because my place had been that, you know, I had to look after everything. And that when she became well enough to start looking after things, I felt a bit lost [as] in, ‘What’s my actual role in this, this relationship?’. But I think that’s kind of evolved from there – that I don’t really see myself as a carer anymore.
Because you changed? You weren’t the person you were before you became a carer? You’re someone else.
Yeah.
Did that dynamic change?
Yeah, I think that’s probably why I had such a struggle with ‘What’s my actual role in this relationship now?’, because…
Had you been more passive before?
Yeah, I probably was more happy just – I was someone happy to go with the flow and not be the one to organise things or whatever. I was happy to go along with what people wanted. And then, you know, become a carer where you’re doing pretty much everything that they need and you need and what other people need. And then to then have that person become well again. As a carer, you get used to being you being the one that’s making the decisions and you being the one that’s having to organise things and do what you have to do or do what both of you have to do.
To then her becoming well enough to say, “I’m doing this” or “I’m doing that” or “I want to do this”. And it’s a real adjustment – was a real adjustment period for me because it was like, ‘What is my role now in this?’ I don’t want to become that person that just, you know, goes with the flow or whatever. Because I know I’m more than that now.
So, yeah, it’s a real adjustment period, I think, for both of us, too. Because she would say to me [laughs], “I like when you just agreed with me. You didn’t voice your own opinion. I did like that sometimes”. And I was like, yeah, I can’t help it now. I just, you know, say if I disagree with someone, something. I’m louder about it or I’m actually vocal about it, where before I would just not say anything.

I would have to say most of the time it controls your life as a carer, it really does, because you’re constantly worrying about it, it never, ever leaves you no matter what you do at the end of the day at all. Whatever, you still can be sure enough that there’s that bloody phone call you didn’t want and, “I’m so depressed and I don’t know what …” sort of … it does control your life, believe me, it really does. I didn’t think it would, but yes it has a great impact on us. I personally think there is no reward in being a carer, I tell you, there really isn’t but then you know, you feel sorry for them, you feel guilty, us mothers, particularly mothers always feel guilty, I would say. They haven’t got a pill yet for being, feeling guilty. Hopefully one day they’ll bring one out, but because all carers do, you know, always.
Feeling guilty, how does, all the time, how does that make you see your own life? How does that influence the way that you think about your life?
A lot of things you miss out on, because, you know, you say, “Oh I bet I’m not late for once before we’re invited to an afternoon”, and then last minute the mother rings up and says, “I have to cancel, she’s just come out of hospital, she’s living with us”. So it affects your life, constantly, every day. There’s going to be that awful phone call you don’t need. And it’s never about you, it’s always me, me, me, me. Come in and say, “How are you, Mum”? and before I can say, “Oh yeah”, well it’s already, “Ha, ha, ha”, “Oh forget it, just let her talk”, yeah, it’s not important. It is to you but…

How do you think you’ve changed through the process of caring? What kind of person are you now that you weren’t before? What are your traits now, qualities?
Oh, that’s very hard to identify but I think there’s no doubt that I acknowledge now that there is often a great web or network behind a front. In other words a person isn’t just what you see necessarily and of course all of us have relationships and get to know people and over time sometimes we find out things perhaps we wish we hadn’t.
But regardless whether it’s positive or negative there are a whole web or network behind people and if we take the time to understand that and see that, perhaps even work out connections as to why a person is who they are, it’s helpful. So I think that I’ve become perhaps more able to understand all of that as I have also said and given the situation I’m not necessarily as private as I was. I can see the value of sharing and hopefully I’ve seen how important it is to deal with frustrations and perhaps despite how difficult it might be to dig deep and even investigate that it is worthwhile when there are lots of unknowns and it’s helpful to find out. We all like to know reasons behind things and perhaps I’m more adept at doing that than I was.
What is it to be strong as a man who cares? Are you strong if you’re a man who cares? Some people would say you’re not.
Yes, I don’t think there’s any doubt about it. I have always believed that.
Believed what?
It’s strong to care. It is a strength to care for people. It’s also a strength to share and discuss. It’s even a bigger strength to respect when people share with you and that’s often an issue particularly with men and I think that they perhaps divulge confidences when any discussion is expected to be kept confidential. So I think you know there’s all that sort of issue. I still have that as part of my persona, that I am suspicious. Often if personal information being shared which I don’t want shared.
I don’t subscribe to things like Facebook for that very reason. That I just think they’re just about evil, that’s a very strong concept but I just think our personal information is our personal information and it needs to be protected. And I think kind of opening all the doors and windows is going a bit far. So it’s a strength to share but it’s also a strength to respect.

Yes, what he says is, not that you would know it, but he says he thinks about his mental health every day. There’s not a day goes by when he’s not aware that he has to think about his mental health. And I think that’s a terrible burden and so yeah, so mental health does affect you inevitably and as you say, is he worried about not being worried, I mean, it’s complex. It’s complex and it is disabling and I just think he does a brilliant job given what he has to contend with, given that he does every day have to think about taking medication, about if I have too late a night is it going to affect my mental health?
If I do x, y and z that other people can do without even thinking about, you know, if I go out and I drink excessively or I take drugs and he doesn’t take drugs thankfully. But you know, if I do, and a lot of young people would, he then, well he doesn’t have to, but he then would worry about that. You know, it does create a burden of worry that you know, other people don’t have to face.
So might you say that it’s almost like he has to put in place a framework of things that he has to consider that other people don’t have to. Or they just take for granted?
Mm, that’s absolutely… yes, that’s right. Yep. If you’ve got a mental health issue you do have to probably on a daily basis be mindful of lots of things. It’s hard. I think it would be hard work. I mean yeah and, and that’s when I do think he is, he fights a battle every day you know? And I think you have to give not just him but anyone with mental health issues – I think you have to give them credit for what they do, you know? They’re facing all sorts of obstacles. There’s the stigma that we talked about before, that it can be subtle as well. You know they do, it is there in the community and society and you do have to be praiseworthy of those people who’re battling it, you know?
And I think not enough people give them credit really. I suppose I see it firsthand, and I can forget myself sometimes too. But yeah, it is a constant battle so we really should be congratulating them on what they do.

I think I’m now more, I think both of us are, really, people that actually challenge each other to be better at just whatever we want to be. I think that’s, our roles evolved from sort of, you know, thinking we were doing a pretty good job of being in a relationship and what have you. I think it’s now evolved into, that we both feel like we’ve assumed some responsibility of actually making the other person a better person. And I think, for me personally, it’s probably made me a better friend and that sort of thing. Because I actually ask how people are, and they feel comfortable telling me how they really are, too, because I’m more empathetic and understanding of how someone might be feeling.
So, I think it’s made me a better friend in that I listen better, where I always thought I was a good listener and what have you, but I think I’m better now at letting someone just be them and not trying, I still try and do fix things for people, but yeah, I think I’m better at listening and hearing people’s issues than I was before. I think, as I said earlier, more perceptive in my opinions and views of you know, why, what might motivate someone to do something or say something or why they might feel how they feel. And I think I’m better in asking the right questions to make that person feel comfortable as well.
So, through being the role of a carer, that’s something that’s affected you as a person and it’s not just a role. Maybe you’re more caring as a person?
Yeah, I think, I think I was always caring, but I think I’m more capable of caring. I think I’m better at it. I think it’s from that role of a carer, it’s improved that listening skills and actually hearing what someone’s saying. Because it’s quite easy to listen to someone but not hear what they’re telling you. So, I think it’s as a carer, as that role of a carer, has improved those abilities.
So, you might say that it’s better for society [laughs] because…
Yeah. Because I feel like I’m a more accepting person of, it’s that simple thing of you don’t know what someone else has got going on for them, where, you know, beforehand, you know, pre-carer role, I might have just thought, “God, that person’s irritating” or lazy or whatever. But now it’s more actually understanding that their motivations or why they are the way they are or that sort of thing. I mean, I think it makes you more accepting of people’s faults.