I've been avoiding this thread for days - sending love to all of you who have parents with dementia.
Reading your messeges has reminded me of things I find upsetting. Now my parents are dead I can just dwell on the good bits, I forget the meaningless conversations, the guilt that I am not living with them and can't do more, the knowledge that things are only going to get worse.
I grew up with a father who had never recovered from a nervous breakdown he had in the 1950's and, due to his manic depression was given ECT treatment (in the 1960's) which led to parkinson-type problems. I have good memories of him up to age 6, then he was was in hospital for years, and came out a changed man, intelligence still intact (we think) but communication skills very diminished, so he appeared demented. I simply could not cope with it in my teens, and felt very distant towards him. My mum was a rock. She looked after both my father and my grandmother, who had developed senile dementia. She was a conscientious carer, full of energy and capablilty.
For many years after my grandmother died my mum and dad lived a quiet life and I visited often, but gravitated towards my mum. When my father died, my mother had a year or two alone then developed a brain tumour. In the space of six months I saw her go from forgetting the odd word and saying to me that she though she might have had a small stroke, to her being bedridden and speechless. I don't know if her illness mirrors alzheimers - it felt like a speeded up version to me - but just wanted to agree with those who say that after a slight personality change and general depresssion she entered a questioning/worrying/still some-self-awareness stage then this was replaced by a calmer, happier stage. Her emotions for others were flattened out, she loved me, but no longer cared for me. So she loved to see me visit, but uncharacteristically didn't worry if I was tired from driving to see her. The last emotions to go, I think, were the ones that related to herself, she still got upset that some of her friends weren't visiting her a month or so before she died. The other thing that seemed a marvel to me, and I don't know if this applies to alzheimers, was that even when she was very ill, some of her personality remained intact. Her illness seemed to slip away from her when we looked through old photos. The district nurse thought she was being eccentric in trying to feed her cat titbits three times in one morning, but this was what she had always done. Sometimes it was necessarey to intercede and say, no that's not mad for mum that's normal for mum I tried very hard to give mum's nurses a sense of her habits, routine and personality before her tumour, so they could see where she was coming from and didn't put everything down to her illness. I felt that was one of the most important things I could do for her.
I found that very near to death, my parents showed more awareness than I believed they possessed. My mother hadn't smiled in days, but the last time I saw her, laying immoveable in bed, my baby ds smiled at her and she smiled back. My dad gave me a distinct, long, goodbye look after I'd showed him some photos - the last time I saw him.
Sykes, and others, if you have any specific questions re nursing homes, I may be able to help. My MIL is a very experienced geriatric nurse (semi retired now) and she and my FIL ran a private nursing home for many years.
I can ask them questions if you like.
Sending you a cyberhug.