Registered User
Feb 15, 2004
North Wales
Hi everyone. My mum has recently been diagnosed with early Alzheimers although from reading various things in books and on the internet I think it likely that she has demetia with lewy bodies. Has anyone had any experience of this? Mum seems to go up and down, she also has a tremor which I actually noticed a long time before any other symptoms kicked in, a doctor actually asked her once if she had Parkinsons disease. The tremor is worse at certain times, especially when she is trying to eat with a knife and fork. She is also very unsteady on her legs. My dad had been caring for her since this started around 18 months ago but unfortunately he had heart failure and passed away suddenly a fortnight ago, to be honest the strain he was under with mum couldn't have helped. My brother and I are now trying to decide what the options are, we are not happy to leave mum in the house without a great deal of care but as we both have young families and I live around 80 miles away and work weekends we are struggling with the limitations of what we can do. We suspected mum had some form of dementia a while ago but when she was admitted to an elderly psychiatric ward for observation she was diagnosed with anxiety and depression and put on various medications. Sometimes she seems quite lucid but other times very agitated and confused. Mostly though she just wants to lie in a chair and not do anything at all - doesn't like tv on or music. She knows that dad is dead but there has been no great outpouring of emotion although she states that she misses him and always hoped that she'd' go first'. Anyway, look forward to any advice anyone can give. Very best wishes to you all, and sorry if I've rambled on a bit! Rachel


Registered User
Jan 31, 2004
near London
Hi Rachel
do feel free to 'ramble' - this is the best place to do it, because the more things you include - situations, symptoms, feelings - the more it is likely that one of our band will say "yes, I've been there". Don't restrict yourself to talking about the person with the condition - those caring need support as much, and there's precious little understanding of that generally. There are folks here who understand only too well, through experience.

Depression is a common diagnosis and I never could get through to the doctors that this was a symptom of my wife's memory problem, not a thing unto itself. Pills, pills, pills was their answer. Nightmare.

Perhaps one of the only beneficial side-effects of dementia I have noticed is a form of natural anaesthetic in that my wife can't seem to feel hard knocks, cuts, nor can she taste food she would never normally have eaten. Probably the numbness/sense of unreality extends to feelings as well. Maybe that's good.

The first piece of advice I would give is to look after yourself in the time to come; it will be a strain.

Then, treat your mum as if she is perfectly normal, no matter what the response. [early on my wife nearly clocked a doctor who talked at her in a loud voice as if she were deaf or an idiot - she would have beaten me to it by just a few seconds as I was furious as well] Believe that, behind the confusion, she still knows what is going on. Think she is just going in and out of a fog.

Getting some care for her at home, or somewhere else, is important. I wouldn't recommend your mum being on her own if your dad was already caring for her. That won't be easy.

Few places deal well with early onset patients and that will be an issue - how old is your mum?


Registered User
Mar 16, 2004
I can sympathise!

I wish I could give you some fantastic advice, but unfortunately all I can do is commisurate with you! I just did my first post about my grandmother tonight (living alone...). I too have thought that my grandmothers diagnosis could be dementia with lewey bodies, but that has not been confirmed.

Right now struggling with the dilemma of keeping grandma at home in her own home and independent or getting someone to stay with her (very much against her will).

Her situation fluctuates daily and some days it appears so silly to have someone stay with her, and then just when I think things are good, she has a hallucination or gets so involved in a delusion that she does something that could be dangerous.

So again, sorry I'm not much help. Feel free to respond maybe we can help each other. Good luck. I just keep telling myself that if I don't laugh I'll cry - a heck of motto huh?