Carers of people with dementia

You mentioned some of the things that keep you going as a carer. Sometimes when the diagnosis is made the person says 'I'm not going to take this on at all'. and I'm really just saying why you took on, or accepted the role?

You don't accept the role, I don't think you do accept it. You're living with a person, I mean I'm not married to [my partner] but that doesn't mean to say I don't feel married to him. I came to live with him because that's what we both wanted to do and the fact that he started to deteriorate, it is a gradual process. I could not abandon him and that's how I would look on it, as abandoning him. Not that I'm saying that there won't come a time in the future when he will go into residential because I don't why, you know, he could because of his deterioration to such a point that it's physical deterioration as well as a mental deterioration and I couldn't cope with him at home.

I mean I have to do his personal care now. I have to wash and he dresses himself still, very slowly and sometimes I have to help him, but I think you gradually slot into this role of carer. If somebody came along and said to you 'You're going to be a carer in two year's time, a full time carer,' you'd say 'No way.' But because it sneaks up on you - do you want a biscuit?

Because it sneaks up on you, you take it on and until something goes woomph like that and makes you think no I can't cope any more you just carry on doing it and without realising a little bit more's eroding, a little bit more's happening, a little bit more's happening like you know now he can't speak, now he's incontinent. You know, now he needs twenty-four hour care. All the things that if you were given at a certain point and this is what's down the road for you, you'd say no way, no way, no way. But you just slot into it.

So I didn't, I don't consider I took on, I made a conscious decision to take on the role of carer. I think it was just part of my life with my partner, my life with my partner now involves taking care of him. Which I never thought it would, that was never in my mind when we first got together. But having said that I couldn't at the moment put him into residential care and have any sort of peace myself. Because I'm not ready to let him go and I don't think he's ready to have to go into residential care. I think he's still able to, although he doesn't show it, he's still able to enjoy the outside world and I want him to experience as much of the outside world as we can while he's still able to, while he's still fit. 

I mean he's more physically fit than he's ever been I think because he's lost weight which I think is part of the dementia and partly because he doesn't eat as well as he did and he's got plenty of energy. So we can go into town and I often see him looking round and I think yes, he needs to be able access this sort of life, normal life as well as being in the day centre five days a week. And I wouldn't want to deprive him of that yet and as long as I can cope with it there's not a problem. So we're not going to let him go yet.

Because I think, you know, there is a lot of that, whether it… whether it be somebody who’s caring for a partner, or a parent, you know, your parents have cared for you and you kind of feel like now it’s your turn to do it, but equally, you know, don’t… nobody should feel that they have to do everything. I think each… each situation’s so different and it will depend on your own circumstances, how much you… you perhaps want to do, but unfortunately I think now the way, you know, things are going, it… it’s going to become more and more common, isn’t it?  So…

And to be honest I hadn’t really thought of myself as her carer, I was just like, this is a member of staff, former member of staff, even if it was one of our clients, she’s not the first person that we’ve taken care of in that way, because you just won’t… well, we just wouldn’t let somebody slip through the net, so you… you stand in that gap. I think it was last year when I realised that the impact of it, you know, trying to do a full… run a service, the pressures of that service, yeah, it impacts your time on your… your family time, you need the support of your family to be able to do that. But it… you know, it has its peaks, it has its highs and its lows, or its intensities when you really had to be there, as was the case when she came out of hospital; whereas now, everything’s quite on a level, it’s on a nice balance, and so… yeah.

But the state that it was in when I was like really young, let’s say about 10, 12, it was completely different to once I got into my 20s, and… yeah. So, I think I became a young carer… [mm] in a sense I was always at home during most of my childhood, just because somebody needed to keep an eye on her and, you know, give her company, and so I’d call that more of like an inactive sort of young caring role, up until I probably got into my teens and I started secondary school, that’s when I’d probably say I was more of a young carer there.

And we were in the same bedroom, so I’d be checking in on her medication, and then throughout the night if she did wake, or such, I’d be there, and if there were any accidents and, yeah, I would probably be like the first person for my family members to speak to because I was with her the most.

And then it was pretty much like that up until I… you know, also when I was in college, but around then I think doctors or services gave her her own bed because nearing the age of when I was 18, that’s when she started to wet the bed more, so they thought it’d be easier to get like… it was like the sort of special mattress. So, she’d sleep in one room and then I would sleep in the living room next to her, so I’d be up at night like working on college stuff also whilst she was awake and needed company, and then in the daytime I was kind of like very, very sleepy.

It definitely impacted my career ‘cos I ended up just doing a job that, I mean, I graduated from uni. It was a struggle. I had a lot of stress trying to manage, you know, everything going on with my mum and then my university and stuff like that. But, you know, I did, I did relatively well to juggle it. And the thing is is when I got home like everyone else was kind of going into careers based on their degree and you know, 9-5 jobs and starting off with like graduate jobs and I didn’t do any of that.

I went to do like a bog standard night shift like a hospital just because I needed something that was flexible in terms of I used to work three night shifts a week and then I had the four days off. So, in essence, I would be there every day. I do feel like that halted my career a bit because I didn’t really, it was only when she went into the care home that I really start, got my first job based off of the degree I did and what I actually wanted to go into. So, that was a period of, you know, two, three years where I was, I just was a bit stagnant. And I actually didn’t work for a year as well after I graduated just because I just spent all my time with mum focusing on her and what she needed. So, I would say, I mean now, I, I think I’ve done pretty well for myself. But if I look back and think, you know, had I had two or three more years experience doing what I’m doing now, where would I be? I’d definitely be further on in my career. But it’s not something that I regret because it, it’s just, to me, it was a, a necessity.

I think that it's very easy to run yourself into the ground, keep going at all costs and that cost might well be your own health. So I think it's important too that you've got to take care of yourself otherwise you're not going to be in a position to carry on caring.

So it's important that you look after yourself by eating regularly. By having time out, it's important to get time out to get away from the caring role, which eventually becomes twenty-four hours a day. It's very important to get out and if you can to relax, enjoy yourself and still accept that there is a life outside the caring role.

So apart from being a carer and taking care of the person with dementia you've also got to care for yourself. And that no matter how friendly, how kind neighbours, relations, family are, when they go you are still caring. And they don't always want to understand, do not always understand the situation that you are both in. And it's sometimes difficult to accept that they haven't understood the situation of your partner, or indeed of the carer and have sometimes looked, said things which might have hurt a little bit because of the behaviour that they have, have experienced. 

I think you've got to try to understand that perhaps the carer and other professionals are the only ones who can understand what the carer is actually experiencing. And we as carers should not expect that friends, relatives and other people will understand the situation that we are, actually in.