Reading through all these comments I realise that I wish I had not 'struggled' on as long as I did with my mother , as it impacted on my marriage.
I had seen dementia already with 3 relatives so there was little of the practicalities to shock me, but what did shock me was the emotional impact.
Even after 5 and a half years in a NH it's still impacting on me/ husband too. Every time my mother has an emergency (apprx once a month) over the past 2-3 years, I have a couple of weeks of 'not being good to live with', as I await the next phone call. being an only child my mother and I were close.Too close and it's not going away, despite the 'distance'. the 'care aspect is there although it's no longer 'hands on'.
Every time I see my mum 'recover' my heart weeps that she (and I ) will have to endure another emergency. They are often seizures, which must be frightening for her- especially when they shove tubes down her throat to ensure she hasn't aspirated any food. Even a baby is aware of pain and discomfort.
Visiting her relatives we were well aware what the very advanced stage of dementia is like and she cried so often seeing her sister & sister-in-law llike that, saying she'd rather be dead. Yet I am powerless to prevent this continuing for her and even though I try to keep the guilt away, it just creeps creeping back everytime I get that phone call.
Even though my aunt lived for 6 years at the very advanced stage of dementia, as all the information said most sufferers lived around 4-8 years after diagnosis I hoped my aunt was a 'one-off'. However my mother, and theer are several others in her home, are proof that many more people live for many years at the bedbound, just existing stage and i wish there was a way to cope with the emotional stress of that.
I also wish that the information was more accurate about just how horrendous this disease is to stimilate people into really putting money behind finding a cure.