My mum had dementia with Lewy Bodies and died last month, just under 4 years after diagnosis. Hers progressed suddenly too. I think there had been signs of the dementia for quite a while beforehand but it took hold very dramatically and the decline was steep. Medication did really help in the first two years but less so after this.
Mum wasn’t talking much at all in the last few months but luckily the Parkinson’s symptoms weren’t too bad. Occasional freezing and a few falls but not much more than that. For the first couple of years we could have really good conversations about the past and I learned so much about her that I didn’t know before which is such a blessing now. I used Facebook to search for photos of where she lived as a child (the general area) and these were always good for discussion. I also found a Facebook group of her old schools and these were helpful too.
I echo other people about not correcting things. My dad used to almost ‘test’ Mum’s memory. He didn’t mean it unkindly but he’d say ‘do you know who this is?’ Do you know where she lives’ etc and I’ve had to tell him to stop all the time. I’m never quite sure why he was doing it but I think perhaps he desperately wanted her to say the right thing. He was amazing with her in every other way so I feel bad criticising him but it used to upset me.
I’d recommend looking for local day centres, support groups as these can be useful for both carer and caregiver. Make sure all benefits are being claimed (attendance allowance etc).
You mentioned looking at care homes. If you can, try and look at dementia specific homes as they are often more suited to LBD patients whose needs are often different from eg Alzheimer’s patients. My mum was not in a specialist place but on a dementia ward in a nursing home. They had two men there who also had LBD and it was weird looking at them as they were all so similar - constantly pacing around, picking things up that weren’t there, obvious hallucinations etc. We had to wait a while for a place as they weren’t sure they could cope with another LBD patient as I think they were perceived by the home as having higher needs.
I’m so sorry you’re going through this. It’s such an awful condition and so hard on everyone. In the end, I was grateful for Mum’s rapid decline. I couldn’t bear the thought of her being in a care home for years and years, with no quality of life. She was there for about 6 months but then got pneumonia. I wish you all the best OP. Feel free to ask any questions.