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Skip to 0 minutes and 7 seconds As a family, you’re all living through this at the same– it doesn’t come with a manual. And you’re reacting to circumstances as they happen. So it’s hard. The trouble with serious illness is, usually, there is nobody around you, amongst your friends, family, your social circle, who are going through the same thing. And so you feel isolated and think that you’re the only one.

Skip to 0 minutes and 36 seconds But getting outside of your own social circle and meeting people who are in a similar situation, you realise that, gee, I’m not alone. And I personally think that must be a great comfort because there’s nothing worse than feeling isolated and alone. Basically, you are on 24-hour call, and you just don’t know when that next call is going to be that you’ve just got to up and go. Because Alzheimer’s usually affects people who are quite late on in life, they think that they’re able to care because they’re their partner. And yet if you were to walk into a care facility, you don’t see many 80-year-old carers looking after people.

Skip to 1 minute and 23 seconds And so it was quite difficult to get mum to begin to realise that she wasn’t always the best. I was a trained nurse. So that I guess gives you a bit of experience. I didn’t do mental health.

Skip to 1 minute and 45 seconds So it has been a really steep learning curve for me, in a lot of ways. For somebody who didn’t have any experience, I think it would be really tough. Dementia I think is probably harder in terms of support than other conditions because it really is 24/7. And it’s also– it changes so that what works one week might not work the next week. You have to be very flexible. It’s tiring. It can be very, very exhausting. I think, from mum’s point of view, she never liked us going away. That was always an area where she was very anxious. And her friends would ring up and say she doesn’t like you being away.

Skip to 2 minutes and 37 seconds And we knew she didn’t like us being away because we could tell. And we made a very conscious decision to look for respite care so that we can actually have breaks away on a regular basis now. We have been advised that we should even increase this to when we’re not away so that we can just have a break on a regular basis. And I think that’s the biggest change for mum. And although she was a little bit reluctant at first, she’s now very accepting of this and, actually, likes it and has made friends there. And that is a positive for us. There’s so many implications when you’re caring, you know, like the financial implications, the stress.

Skip to 3 minutes and 30 seconds I’ve given up paid work in order to manage the situation. I have no pension, you know, things like that. These are real, tangible difficulties that carers experience. And I think probably in the early stages, that maybe sort of dominates. I think now that both mum and dad have been in care for a number of years, I’ve actually been granted a period of reflection, which I wouldn’t have had had they died suddenly. And I’m not sure initially if I thought that was a good thing. I think now I do. I think that I’ve had an opportunity to, as I say, maybe almost re-establish a relationship that I didn’t have. It’s your partner. And they’re important. They’re a person.

Skip to 4 minutes and 16 seconds And no matter what’s going on in their mind– and they’re messing yours up as well– they’re still your partner. And to me, that’s so important. But you’ve got to try and get through those little things that are not easy. And you’re going to have floods of tears from time to time. You’ll scream, you’ll yell, and you’ll swear. You’ll do it all. The emotions are amazing. You just– your whole body is going. But slowly, but surely, you do come to terms in little steps. My mum and dad celebrated their 60th wedding anniversary a couple of weeks ago. And it was difficult to organise, but we managed to take my mum from her care home over to my dad.

Skip to 5 minutes and 8 seconds The rest of the family came. All the grandchildren were there. And we had some cake. And we played some music. We had cards and some flowers. And it was only an hour, but it was a really precious and special moment. And we’ve got photos of that. And that’s not just– even if mum and dad don’t maybe remember that, as the rest of us, we’ve still got that. And we are still a family.

Carer stories

In this video, our family carers share their personal feelings about caring and supporting someone with dementia.

They talk about challenges they have faced, how they have coped, their emotions and also share some positive experiences.

  • Does any of what you see and hear in this video feel familiar?
  • Do you have similar experiences to share?

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This video is from the free online course:

Dementia Care: Living Well as Dementia Progresses

Newcastle University