Lewy bodies


New member
Oct 8, 2023
My mum has Lewy bodies dementia. I have given up my job and doing 24 hour care. She paces from bed to sofa most of the time she is awake. She is anxious, tearful and says she doesn’t want to be here. Generally her speak is very quiet and nothing now makes sense. It makes it pretty much impossIble as I can’t answer her as I don’t understand what she means which is frustrating for us both. Nighttime is impossible as she gets up at least every hour or more. She is not walking well now and has had 2 falls this week. She shuffled and is shaking a lot more. I am starting to dread the day as she doesn’t want to be at home. I take her out in the car and she wants to come home, then we go back out and so on. I’m doing roughly 80 miles a day driving round going home etc. she is a little frightened child and I get so upset with the thoughts of her when I was growing up and she was so very different. People look at us some with sadness, some just stare and I feel she is just on view. The few minutes I have before she starts wandering is breaking me. I feel so lonely. She hasn’t eaten for 10 days but is still drinking but swallowing seems to be getting harder. I’m waiting for mental health to ok some sedative to help ( 3 weeks ago) so will chase them again tomorrow. I’m sat looking out the window watching everyone getting on with their lives and it makes me realise how distraught we both are. Many people say it must be awful if only they really knew awful is a meaningless word. It is the saddest, unbearable illness and so cruel.


Registered User
Feb 25, 2014
South coast
Hello @Pebbles44

Im so sorry to hear about your mum, you must be totally exhausted.

It sounds like she is coming to the end of her life, but this stage can go on for a very long time. She is obviously not happy in her home and I wonder whether she (and you) might be better off if she were in a care/nursing home

Grannie G

Volunteer Moderator
Apr 3, 2006
Welcome to the Dementia Support Forum @Pebbles44

How much longer do you think you will be able to sustain this level of care? Being distraught and unable to rest is not sustainable.

Are the services aware of you and your mother`s needs? Have you asked anyone for help?

It really does sound as if you and your mother are alone in the world. You will not be disloyal to her if you ask for help.


Staff online

Forum statistics

Latest member