Carers of people with dementia
Health and fitness of carers
Their own health, mental health and mobility were topics that worried the people we interviewed. Some people also described how much better the physical fitness of the person living with dementia was over their own. Many of the people we talked to mentioned health conditions and physical limitations they were experiencing that made them worry about planning care in the future for the person living with dementia.
Julie describes her friend’s physical fitness over her own.
Julie describes her friend’s physical fitness over her own.
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I mean [friend’s], what… five years older than me, no, [coughs] sorry… nearly six years older than me, but physically she’s fitter than I am, so although we’re five years in, she could go on for a long time yet and, you know, and there’s every possibility that she might outlive me.
Julie describes her friend’s physical fitness over her own.
Julie describes her friend’s physical fitness over her own.
I mean [friend’s], what… five years older than me, no, [coughs] sorry… nearly six years older than me, but physically she’s fitter than I am, so although we’re five years in, she could go on for a long time yet and, you know, and there’s every possibility that she might outlive me.
Charlotte talks about her own physical problems and her ability to manage her mother’s care.
Charlotte talks about her own physical problems and her ability to manage her mother’s care.
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Hugely, yeah. I mean, I’ve had to, ‘cos I had to give up my career anyway because I’ve had, as I said, I have health problems and I got I basically had glandular fever which went into ME. And I, so, it’s a chronic long-term condition I had even before mum was ill. But and then I had, I did voluntary work and I part-time but I’ve basically had to give them up because I need the flexibility of going home and also mum’s needs and management of her primarily, but also running her house and home on top of that. Getting her shopping done. Making sure the house is clean. Making sure the carers are doing a proper job. Making sure her prescription is up to date ‘cos she, not only does she have her medication, she has supplemental things as well to that. It is just all consuming and extremely, I’m just frazzled the whole time as you probably [laughs] as you may tell. I’m just really really tired.
Charlotte talks about her own physical problems and her ability to manage her mother’s care.
Charlotte talks about her own physical problems and her ability to manage her mother’s care.
Hugely, yeah. I mean, I’ve had to, ‘cos I had to give up my career anyway because I’ve had, as I said, I have health problems and I got I basically had glandular fever which went into ME. And I, so, it’s a chronic long-term condition I had even before mum was ill. But and then I had, I did voluntary work and I part-time but I’ve basically had to give them up because I need the flexibility of going home and also mum’s needs and management of her primarily, but also running her house and home on top of that. Getting her shopping done. Making sure the house is clean. Making sure the carers are doing a proper job. Making sure her prescription is up to date ‘cos she, not only does she have her medication, she has supplemental things as well to that. It is just all consuming and extremely, I’m just frazzled the whole time as you probably [laughs] as you may tell. I’m just really really tired.
Johnny describes his mobility and ability to move around.
Johnny describes his mobility and ability to move around.
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Again going back some time ago and I came in and I could smell bleach, and somehow she’d got the bleach and she’d put bleach on her face, because she puts creams on her face sometimes, and I came in and I could… realised she… she’d got bleach that was all over her face, and I quickly washed her hands and face, so when… when [name] is here, I’ve got to keep my eyes on her.
And of course my mobility’s not been… so if I see… and [name] goes in the kitchen, I’ve got to get up, so if we was getting up here, now I… I’ve got to do… that… that’s getting up, you know, so, I’m not as bad as that once I move… if you move backwards and forwards and I’m not as bad as that, but that… that’s… you know, I’m not… not kidding when that’s getting up and down.
Johnny describes his mobility and ability to move around.
Johnny describes his mobility and ability to move around.
Again going back some time ago and I came in and I could smell bleach, and somehow she’d got the bleach and she’d put bleach on her face, because she puts creams on her face sometimes, and I came in and I could… realised she… she’d got bleach that was all over her face, and I quickly washed her hands and face, so when… when [name] is here, I’ve got to keep my eyes on her.
And of course my mobility’s not been… so if I see… and [name] goes in the kitchen, I’ve got to get up, so if we was getting up here, now I… I’ve got to do… that… that’s getting up, you know, so, I’m not as bad as that once I move… if you move backwards and forwards and I’m not as bad as that, but that… that’s… you know, I’m not… not kidding when that’s getting up and down.
Mary talks about her sister-in-law’s mobility in comparison to people who support her.
Mary talks about her sister-in-law’s mobility in comparison to people who support her.
But, luckily we’ve only had to call the police once and now she wears a tracker, so that, but even, if you’re with her out with her outside it’s a possibility that her mood will change just like that for no apparent reason and she’ll walk incredibly fast away from you. Of course, it’s not a problem for me, but that can be a bit of a problem for my mother who is 83. So, it’s a lot of, there are a lot of challenges. It’s amazingly rewarding when, when sister-in-law is happy. But it’s also and it’s incredibly tragic when she’s sad. So but we’re kind of managing. But I mean, that’s a, well, I don’t know whether it’ll get harder or it will get harder, but we don’t know at what point she will become less physical, physically able ‘cos in a sense that’s almost a problem at the moment.
Some people also felt the circumstances they were facing were challenging and they themselves needed extra support. People talked about how caring responsibilities affected their mental health. For some people, they were experiencing depression and anxiety and received medications to help them. Others received counselling and therapy sessions.
Carol describes her anxiety about caring for her partner.
Carol describes her anxiety about caring for her partner.
Well, I’m on antidepressants now. I wasn’t before. I’ve been on those about eight months, I suppose, yeah, eight or nine months, only a low dose, but it helps take the anxiety away. I don’t get a lot of time to myself, really. I used to do a lot of gardening, but that went by the way, went by the wayside last year. It’s yeah, he’s, if I’m not with him, I’m thinking about him or I’m doing his finance or I’m doing his pills or I’m doing something, something to do with him. So, yeah, there’s not, not a great deal of time for me, really. I mean and I do try and keep my life going, trying to hang onto my life with meeting friends and going to classes and things like that. But he, you get tired, you get really tired, yeah. It’s, it’s quite hard, really. And I’m not getting any younger. So yeah, the older I get, the tireder I get, really.
What do you think is the cause of this sort of depression is?
My depression? I think it, well I don’t know, really. I used to suffer from depression when I was very young, in my teens. And I felt that feeling coming back so I thought I better do something about this before it gets too bad. So, that’s when I went to see the GP. And I just think it’s probably the stress of, of looking after [partner] and sorting everything out and also, I suppose wondering how it’s going to end, really. Yes, yeah so I think I would feel a lot better if he was in this complex, so I would know that he was, there would be somebody there all the time which I think would be a relief really to know that he was safe, yes, yeah.
Andy talks about his mental health struggles and how it impacts his ability to care for his father.
Andy talks about his mental health struggles and how it impacts his ability to care for his father.
ike… I mean I just try to do what I can and like I’m not mentally OK, I’m not like mentally stable yet, but I try to help, but I don’t see any like… and benefit or any impact yet that could help him, and yeah, I’m just struggling myself, but there are days when I’m just tired and then I just stay in bed and I just give up and I can’t help him, but yeah, I’m not… I’m not capable to help him, yeah, all the time. Some days I will, yeah, when I have a bit of more energy, and when I feel a bit more positive, some days, but other days, yeah, I can’t because like he always needs someone every day, but yeah, it just can’t be me at the moment. I’m just… I’m just not mentally and physically ready yet, yeah, because I have to focus on myself and then… to get better, so I can focus on him.
Jackie describes having counselling sessions for support.
Jackie describes having counselling sessions for support.
So, I have my own private counsellor as well like a counselling through work when I was off sick. And I actually managed to find her privately and I continued with her and I have occasional sessions with her, which are just supportive and help me deal with some of the emotions that I have around dealing with the situation that that I’m in, ‘cos this was not the plan at all [laughs]. You know, even if you sort of think about dementia in your life, in the future, you don’t think of it when you’re well, how old was I? If he was sixty, I was fifty four. You know, you don’t, you don’t think about.
Last reviewed November 2023
Last updated January 2024
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