Grieving someone who’s still alive - my mum

[tomissmymum]

My mum has severe mental health issues, they thought she might have had early onset Alzheimer’s but consensus is probably not . Waiting on MRI results so that they can prove it is just mental health, but that’s taking ages .

My mum is utterly unrecognisable from her former self, she doesn’t communicate much with me . All the mum things you’d expect like hugs, asking how I am, giving me advice, they’re all gone and now she needs help dressing, using the toilet or making a bit of toast .

Her carers have said I need to back off completely because she expects me to do everything for her and they said I’m ‘killing her with kindness. I keep thinking if I do everything right, make her happy, she’ll be back to my mum again but nothing works and get so angry and hurt and lonely . I’m living with her and feel very childish at times because it’s that mummy/daughter relationship iyswim . I’ve been her carer though since I was 5, now 30 .

My dad couldn’t be less interested if he tried (25 odd years divorced) .

I’m so fed up with it all, I don’t know what to do anymore . Family were/are helping but they’ve got their own lives and we don’t often talk about feelings .

I’m seeing a MH person who said it’s like grieving for someone who’s living and said stuff about stages of grief but I feel like by saying that I’m being horrible to mum, who’s still very much alive thankfully - but not my mum anymore .

If it was dementia Gp said there would be help but because it’s mental health it’s a
nightmare getting any advice at all .

So sorry OP. It does sound a lot like the dementia case I've seen in my family. I suspect you need to start thinking about a long term way to safeguard not your mum and yourself. L

Looking after someone with dementia is incredibly hard and ultimately becomes impossible. Your mom would not want you to spend your 30 doing this.

(I've been grieving for my mum for the last two decades, since she was carried off on the eve of retirement by an abusive shit who has recently died of dementia. Looking after him nearly killed her and now she is a shadow of herself.)

Just waiting on GP ringing me back, she phoned earlier said she was desperately trying to get access to mum’s scan results - said she would phone as soon as she saw them . Said if scan’s normal consensus is it’s psychiatric or functional, if not then we go from there (eg stroke, dementia) . Mum’s spent all day insisting her mum is still dead and demanding proof that she’s still alive and not an imposter . GP said just nod and agree and redirect . I’m so incredibly tired I’m falling asleep sitting in the lounge .

Supposedly Mum’s GP’s going to speak to her consultant today - she said she got an email saying he’ll ring her in working hours today, and then she’ll call me and let me know what the scan says . I don’t know how they handle that if it’s bad news, although she said she highly doubted it was e.g. a brain tumour as she said that would probably have been followed up immediately, but said it could be eg

It’s all a bit confusing and worrying, if it was
normal surely the consultant wouldn’t tell GP he’s going to phone, surely he’d just say yes, all normal and fine .

I don’t know .

GP said if it was dementia I wouldn’t be left on my own and said it might actually open the doors for more and better and specialised support, as opposed to just now where we’re very unsure what’s happening and muddling through .

Goodness only knows . Hopefully I’m not waiting too long to get phone calls today !

MRI shows frontal lobe atrophy . GP said that could be a normal part of ageing or because of head trauma but she’s to go for lots more tests next week . Google only comes up with fronto-temporal dementia . Shattered and gutted .

My mum had this at the beginning of her dementia journey but the front shrinkage turned out to be inconclusive. The next time she had a scan, it was more at the back and she ended up with a diagnosis of Alzheimers. She is a lot older than your mum, though - 79.

Depending on the type of dementia, there are certain drugs that can help and a diagnosis can open doors to benefits and support

I’m sorry you’ve been through this too x

She’s got to go for a lumbar puncture and stuff, GP said she’ll be in hospital for the day with different doctors seeing her . They said she could have encephalitis but I wouldn’t have thought that would have lasted six years, which is how long this has been getting worse .

she’s still insisting her mum is dead, crying her eyes out asking for her mum, but when I tell her she’s alive - we saw her today - she doesn’t believe me, says I’m hiding her mum from her .

she doesn’t believe she’s at home either .

But then we put an old video on earlier and the change was instant, she was calm and she recognised people and she was laughing . It’s so so strange and scary. I don’t know how to calm her down all the time and what to say to her .