Emma – Interview 19  

Emma – Interview 19

Age at Interview: 44
Sex: Female
Background: Emma is a higher level teaching assistant. She has children aged 9 and 11 and is separated from her husband. Ethnic background: White British.

Brief outline:Emma began caring for her mother when she developed signs of Motor Neurone Disease. By getting end of life care funding and help from live-in carers, Emma was able to keep her mother in her own home until she died.

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Emma’s mum fought against using a hoist but eventually the care workers could not move her anymore and they persuaded her to use it.

 



Did you have to make some adaptations to your mum’s home so she could manage at home? I mean was she still doing the stairs for instance?

Very quickly she couldn’t do the stairs, so yeah, almost, almost immediately we put a bed downstairs for her, and she had a grab rail next to the toilet but, you know, my mum wouldn’t use it, even though we put it in. So very quickly Mum just lived in the living room and she used to, in the early stages, be able to walk to the kitchen, because Mum was a heavy smoker and I think her attitude, perhaps quite rightly so, was, “It doesn’t matter anymore.” Because, not that she said that, but because she didn’t, but I think, you know, she was never going to give up her cigarettes at this point in her life. So she used to walk with – they’re called Zimmer frames aren’t they? - but she’d only walk with me standing behind her because she was frightened about falling, because a couple of times she’d fallen and had to call 999, and, obviously, that’s not a good place to be. So because I’m half an hour away from her, they always got there before me, and I obviously got there and picked up the pieces. But for security she’d get me to walk behind her. And again, we’d got into this routine of that’s what we did, but God I hated doing that, because, you know, I was as frightened as she was, thinking that, you know, she was a bigger lady than me and what was I going to do? I couldn’t pick her up. And, in one case, she did fall down, and she was just about strong enough to help me get her up then. But that was in the early days, you know.

So yes, there were some adaptations but not as many as was offered to us, because Mum fought against things like that.

Because she’d done this, she’d plateaued and, occasionally, she’d go down a little bit and would always have this fight, particularly with something like a hoist, you know, and it’s so totally undignified. It’s not what anybody wants to do. So mum fought against it. And the carers, again, you know, all credit to them, they would lift Mum when they shouldn’t have done, and I know they were doing it. They always, you know, I always went out of that room but I knew things were happening and they were just doing the right thing to help my mum, rather than what it said on their bit of paperwork they should be doing. But it got to a point where they said they can’t do this anymore, and we persuaded Mum to have a hoist and things.
 

Edwina Currie
Caring for someone with a terminal illness
A researchers thoughts
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