Lewy body dementia or end of life?

Hi all,

My nana is 97 and has had vascular dementia for around 10 years, she’s done really well with it, very forgetful but still completely “with it” and no changes in personality up until just the past few weeks. She had a big decline over Christmas, refused to believe it was Christmas the whole time and wouldn’t go to bed one night because she wouldn’t believe what time it was. She was quite agitated and very stubborn. She was also talking to herself quite a bit. After 3 days of this, the next day she was so much better. I thought this might be signs of end of life but upon reading it sounded like it could be LBD since my mum has mentioned she’s been hallucinating for a few weeks on and off which was probably the first change that happened.

Are the symptoms of end of life restlessness/confusion similar to LBD? Here are all the symptoms I can think of-a very low body temperature of around 33C. Hallucinations and delusions thinking everything on the TV is wrong or my mum and me are wrong. Stubbornness and agitation. Getting stuck in a loop trying to eat a meal or put her make-up on for hours but not seeming able to do it. Won’t let anyone try and help her do something. I just want to be prepared and I hope she can still stay at home, I realise we are lucky if it is LBD that she has not suffered from it until now. I spent a lot of time with her over Christmas so I’m at peace with it being end of life too.

When my mum was very I’ll, I googled “Signs of Dying” with tears rolling down my cheeks. I found some good articles about how the body gradually shuts down. It’s a shame I didn’t do this when the first of our four parents was poorly. It’s a gentle process, in fact mum survived for two more years. One of the strangest ideas was someone fiddling with imaginary crumbs, about 2 weeks before the end. However this was exactly what mum did. Ask your GP to arrange Fast aTrack NHS Continuing Healthcare for nan, so you have support at home. This is the time to consider which funeral director will be used, depending on funds available. Usually a bank will pay an invoice directly from a customers account immediately, before probate is granted. I hope this helps.

Hi Julie,
You may well be right, however I think it would be a good idea to contact her GP to rule out a UTI as these can cause confusion etc in tbe elderly. Also, the GP should be able to offer advice.

Info here UTI in the Elderly: Signs, Symptoms and Treatments - AgingCare.com
Scroll down to Lesser-Known UTI Symptoms in Elderly Individuals



thanks for the replies. bowlingbun-yes I already came across the “fiddling with imaginary crumbs” on this forum (probably was one of your posts actually) and my nan does do this lately, although it’s hard to know if they are imaginary or not since she does mess about with her food now and probably does drop a lot of crumbs down herself.

I spent boxing day night in bed in tears, gave myself the worst headache from it! Not cried like that in ages, thought I had accepted it (wasn’t sure she would make it to Christmas and told my mum to prepare) hadn’t gotten that upset before I googled the same as you so I can well relate with you there. Thank you for sharing your experience with your mum.

Melly-thank you so much for the link. I didn’t think she could have a UTI as she’s just finished antibiotics for a leg infection (she has poor blood flow causing ulcers etc.) although appreciate you need different antibiotics for different things. She also doesn’t wee much now (another sign I thought of the body shutting down :frowning: ) However, she does get a lot of blood which is listed in the symptoms. My mother tells me it is from the back passage (probably piles) but I don’t see how it can be when it’s often when she’s just done a wee. I will definitely look into this more now and raise it with the doctor. Thank you!