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Skip to 0 minutes and 8 seconds I think I was initially. When mum first was diagnosed, I realised I had a huge grief reaction. I think now I’m accepting of the future. I see and hear relatives grieving the loss of the person they knew when their relative gets dementia and loss of the future they might have had when their dementia means that they aren’t as active. They can’t remember. They can’t interact with their relatives. And they feel it is a very sudden and very real bereavement. A very real grief comes alongside that. Anticipatory grief is around grief process before someone dies. And really with dementia, that can start very early because there’s often a series of losses associated with dementia.

Skip to 1 minute and 12 seconds So actually, family carers can be grieving for some time. And particularly in the last year or so of life, we see a lot of family carers grieving. And it’s very normal. And it can be a very positive experience, actually, because, when the person dies, lots of families will tell us they feel relieved. They’ll then feel guilty about saying that. But actually, that’s also very normal. Their loss of role as a wife to that person maybe or, you know, a relative, a sister, a best friend, and now they’re a carer for the person.

Skip to 1 minute and 55 seconds And also, the role that the person had to them so that maybe they don’t have a husband in the same sense that they have had or a father or a friend or a brother or a sister or, you know, a colleague, anything like that. And I think a bit like grief, it’s a bit like waves, and it hits you now and again.

Skip to 2 minutes and 18 seconds And I think I was totally thrown by that. It’s the place in between having hope that things are going to get better and letting go. And it’s that argument between yourself. They’re going to get better, but you know they’re not going to get better, but hoping they’re getting better. You do feel a sense of loss. You’ve lost that person.

Skip to 2 minutes and 42 seconds It’s very hard to explain. But emotionally, you’re all over the place. You can’t have a conversation anymore or any coherent conversation anyway. You get tearful. I get very tearful now because I think, well, he’s not there. It’s just not the same person anymore. You’re doing things for them that you would never have dreamt you were going to do. And it is hard. And I do struggle with emotions sometimes, but you’ve got to try and just take each step as it comes. Quite often, people don’t actually know that they’re experiencing anticipatory grief. You know? They know that they’ve got all these feelings, but they’re not really understanding that it’s actually grief. It’s grief that’s started long before the death.

Skip to 3 minutes and 53 seconds I think it’s important to acknowledge that everybody’s grieving process is different. It’s not a linear process with an end point, that it’s very fluid. Somebody would say to you so you’ll have done your grieving because they talk about you have been dealing with a loss, like you’ve already done your grieving. My aunt, for example, will say that. She says that she has done her grieving. I think my answer to that was I’m not sure when I have had time to do that.

Coping with loss

This video explores dealing with loss as dementia progresses.

Our family carers and healthcare professionals share their personal feelings and emotions, and our healthcare professionals explain how grief is normal and can affect people differently and at different times.

They share how coping with loss and grief can involve feeling some difficult, but common emotions which change over time.

  • Have your own feelings changed over time?
  • If so, how?

We will ask you to explore this topic in more detail in the next step.

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This video is from the free online course:

Dementia Care: Living Well as Dementia Progresses

Newcastle University