So I mean, -so they live in London, I don’t see them every day but they phone very regularly and they’ve got a happy lives, she gets on with things, she is happy, and it gives me a boost really. And for instance when I went to that conference I asked her if they would not mind coming here to stay for the weekend with their brother, and they said yes, and they went to see friends, school friends and so on, but they was there and, so they had, you know, meals together and so on, so that’s given me, at least I don’t have to, -I mean I’ve got to be careful because they’re young, they’re fragile as well, but at least I know they are OK, so that gives me a boost, and we talk and so on. And in fact I used to talk a lot about Max to them, and once they told me, You’re always talking about him, and I would like to talk a bit about u. So I said, Yes

Now although I’ve got brothers and sisters -you see, as I’m single and not married they think I’ve got plenty of money, and all the time in the world, you know, they just come and make token visits. Like ‘sick visiting’ half an hour, one hour, one day a week, that sort of a business. So, obviously it’s my mother, -and then if the roles were reversed she wouldn’t abandon me, so that’s the reason I’ve decided to look after her as long as I can.

So, -and then any, -well my closest friends are either single or divorced, or some of them are married but they’re not in my situation so, with the best will in the world they can’t understand. So, some don’t want to know that side of me, you know, don’t really talk about it. Some try and understand. Some will say things like, they’ll say, ‘Oh I wouldn’t put up with that. ‘Oh I’d get rid of him. And I think, ‘Well that’s not really helpful, you know, or that’s, -I don’t want to get rid of him because I do actually love him so, and he is my husband and’, or they don’t under-, they think that if he wasn’t ill and he was doing some of the behaviour he does you’d think, ‘Oh he’s not a very nice man. But you’ve got to remember that he’s not well, so that’s why he’s behaving like that. So some people make judgements thinking about his behaviour when they’re forgetting that he’s ill. So I choose the things that I say to even my friends, because a lot of them misunderstand. And so, one or two friends I’ve got, where we just sort of have a laugh and that, so I might explain a situation that’s happened and they might think it’s funny, and then we’re just talking about the weather kind of thing. But there’s nobody I have where I can, -that understands me and where I come from, that yeah -I do like to have a laugh but sometimes it’s nice just to talk to people and go, ‘Oh god you can’t believe what I’ve just put up with in the last two or three days’, and just be able to spill it out for them just to listen. You’re not expecting them to change, you know, come up with a miraculous answer that, they can’t, but just to actually listen and acknowledge the impact on you. So I don’t have anybody that I can do that with.

So you feel lonely?

Yeah. Yeah lonely is another word, like the grief and loneliness, yeah. Yeah and, but. And all I can do in my loneliness is give it to God. That’s all, I have faith and that’s it. And it’s, so it’s the times when it’s really bad, is the times when you’re even more lonely. The times when you need somebody even more is the time you don’t get somebody.

This was really upsetting, it was a really, really exhausting time as well because I was just watching my father fade from, month by month really, so that eventually I couldn’t really have a reasonable conversation with him. And I was his sole carer, the only one in the family really who my dad could really rely on. And he has a sister, -well he’s got a couple of sisters who live in the States and his sister in Miami was always really supportive and my dad, when she’d phone, my dad was always really strong and she would say, ‘Oh he’s fine. There isn’t anything wrong with him. There was this sort of connection that they had that my dad seemed to be empowered by, by hearing her voice. But obviously that, my dad used to be upset on the phone [coughs] because they hadn’t seen each other for like 59 years.

Gosh, that’s a long time.

Yeah. So she’d known, she was 20 and my dad was 19, I think, when they last saw each other.

And carers, -other carers, because there is no need for many explanations, they understand really where you are, and while, you know, with some people for instance, they would say well what’s wrong with Max? Whenever I phone him, he answers the phone, because he’s very articulate, I don’t know whether they expect him to be screaming over the phone, but he doesn’t always answer the phone, but when he does, -and it’s one thing that has always surprised me, the way he can hold a, I mean it’s a short conversation, but he appears very together, that’s really quite amazing. And so that sometimes gets on my nerves really, with everybody expecting him to be climbing on walls or-.

What about your friends or family or anyone else?

No. My wife’s friend is Chinese she lives next door to us. She is elderly. We got a lot of support from her.

In what way?

She used to come our home everyday, and sit and talk with us. My Mrs is a people’s person and she like people a lot. If anyone comes to our home she is happy. She forgets to argue and forgets her illness and she gets entertained by people. She loves to feed and give refreshments to people. She [the neighbour] used to come home everyday and sit with her. My Mrs has a habit of drinking a lot of tea, in a day she will drink at least 20-30 cups of tea. When the Chinese woman came she got my Mrs to stop drinking tea. She got her to drink hot water. Once before, when before I stopped working, the Chinese woman came when my Mrs had fallen. She got her spare key and she got the neighbours together and opened the door and she pressed the panic button.

When you got her support, how did you feel?

In my heart I felt there is someone nearby and felt if something happened there is nothing to worry about or if I wanted to go out then I will get support. If I tell her that I am going out, she will phone or will come into the home, sit with her or take her out for a walk for a bit.

So did you get some relief from that?

Yes, some relief, that someone is nearby, that not alone.

The church we go to, we’ve got some, one of the ministers, now he’s retired and gone, they come to see her every week, and they come and give communion, and some of the church members come and keep company, and this sort of business, you know. But once again there are churches and churches, some churches people turn up at 11 oclock, 5 minutes to 11 before the service starts, 5 minutes past 12 they vanish. And they can go to church for years, they wouldn’t know whos who, they’re like strangers, you know, so like that. Yeah that’s it. But there are some, -like I go to a Sri Lankan church, well if I don’t go there one week, the minister or somebody, ‘Hey I haven’t seen you, what happened’, which is nice to feel wanted. Then if I say, ‘Oh, no I’ve got this ruddy depression’, ‘Is there something we can do for you, come along and spend a day with me’, yeah.

That’s the most important issue, because the people can, the outside people they can watch, see and laugh it on. Very rare you get support from outside. So if you want to support you have to do support from the home, like a charity begins at home.

And what about support from the community?

Well, if the people who understand those problems then they can talk to the community people and say that in -openly, in community members and then say that, ‘Look, when this is the type of issues coming in our society, now we can take some action or we can take them, -if you can’t look after them, take them to the old people’s home or children’s home or fostering them, and if you can afford to them to send in a hostel you can do that way. Otherwise I don’t think so, -you can live your life like that because come what may happen, something happens to you who can come and help you? So the community should get together and think about the progress or ‘unprogress’ or any issue of the health problem -they should take into their hand and give them support.