My mum's being assessed for early onset dementia, she's mid 50s . She's had problems for years and years, slowly getting worse - she doesn't talk much anymore and spends most of her time staring into space or picking at her hands . Self care skills are very limited, she's been assessed as unsafe to live independently and needs help with all but most basic tasks .
Her neurologist phoned me last week and said they're going to reassess her next week if possible, they aren't sure what's just severe mental illness (said possibly depression and conversion disorder/FND) or what's possibly dementia, but he wanted to me bear in mind I might not get the news I want. Mum's GP also phoned me and said much the same thing. They said if its bad news they can offer support post diagnosis for one year at least .
They've been talking on and off about dementia for several years and I'm very aware that my mum hasn't been herself for a long time but I'm finding I'm a bit overwhelmed and feeling physically ill with it all. I've got one sibling, she's younger than me and has her own SEN - we have talked about the possibility that mum might get worse rather than better
We don't have other family that we're especially close to, do have a big family but wouldn't normally talk to them about problems or worries. Have tried and just got told there are worse things than dementia, everyone dies eventually anyway and I would get used to it. I suppose that's true but I'm not sure how I can.
How do I start dealing properly? It may not be dementia, it might just be the same as always - mum's been seeing psychiatrists since long before I was born, but I'm distinctly aware that there has been a big change over the last few years .
Consultant and GP said look into early onset dementia support groups in the UK but there doesn't seem to be all that many - and there's very, very limited support for carers if you're not under 18, or caring for a child or an elderly parent (and even then, its still very limited) .
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how do you make peace with possible bad news?
39 replies
howdoibegintodeal · 27/11/2021 11:57
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