Bizzare talk

Hi. Had anyone any experience of caring for someone with Lewy Bodies? Mum is now in a care home and had been for a week. When we go and see her she looks well but comes out with the most bizzare talk. She goes on about that shes bin out all night, walked home, she thinks she is in a hotel, thinks she has been to lots of places, cant really remember anything we have said, goes on about cats and do it goes on. I have been advised to go along with it ad it is easier for mum but sometimes it is so hard to go along with. She is slso crying alot. We dont know if it is the Parkinsons, the dementia or something else. Can anyone advise? Thanks

Hi Springy12,

We are sorry to hear about this. Someone may be able to share some experiences but you might also find it helpful to call the Helpline and speak to a nurse? Call free on 0808 800 0303, we are open Monday-Friday: 9am-7pm, Saturday: 10am-2pm.

Hope that helps.

Best wishes,


(Digital team) 

Hi Springy12,

I was very interested to read your post, but sad as well. My Mum, (sadly no longer with us), experienced similar delusions, but was never diagnosed with Lewy Bodies. She was admitted to the mental wing of a hospital, where she deteriorated daily and eventually died of a heart attack. The consultant kept changing her meds.,but she just got worse. The mental unit was awful and she was amongst drug addicts and suicidal people of all ages. She was neglected and became so thin and frail. It broke my Dad's heart.

Like your Mum, she thought she was in a hotel and said that at night she was being raped. She was also very anxious whenever we took her for a drive in the car and said we were being watched by the nurses, who had secret cameras everywhere.

It was very distressing for all of us, to see her in such a state and we didn't know how to talk to her. I think you do have to go with her flow, but try to distract her by asking her to recall happy events that happened in the past.

To this day, we have not been given a diagnosis of my Mum's condition. It was like pulling teeth, trying to get any information from the staff at the hospital. If she did have Lewy Bodies, then that might explain my Parkinson's 

I do hope you get better treatment for YOUR Mum. You have to nag the medical profession and don't be fobbed off......keep asking them questions. I wish we had.

Hi Twinks

Thanks for your reply. I had a meeting with the Parkinsons Nurse and mum yesterday and she was lovely and very understanding. She has taken a list of all mums meds and is going to speak to both the memory clinic and the Parkinsons specialist and due to hear back next week.

Sorry to hear about what happened to your mum- sounds horrendous and very sad.

I do mither people alot to try an make sure mum is ok and looked after. The people at the care home she is now in are so far lovely and very helpful.

I just hope we can get her settled and more relaxed to be the happiest she can be- it's heart breaking to see her like this.





  Hello Springy12

                    My dear wife is often on the receiving end of very strange language , and its occuring too often now, it is mostly when I have been dozing  and is worse if I have been hallucinating.