• We're currently experiencing technical issues with our newsletter software, so our Dementia Talking Point monthly updates have been put on hold for now. We hope to restart the newsletter soon.

    Find out more >here<.

Feeling overwhelmed by dad's Lewy Body Dementia diagnosis


Registered User
Feb 7, 2016
Hi Victoria

I've not been on TP long either, like your Dad, mine has Lewy Body, he's 69 and was diagnosed about 2 years ago, but has shown signs got a lot longer. He has phases where he sleeps a lot and during these his personal hygiene and general level of apathy can be pretty bad, he's had a few major episodes of hallucinations that resulted in hospital treatment, and has been in a care home for approx the last 12 months.

Many of the issues you mention have cropped up over the last few years, I can't say I've got all the answers, or that it gets any easier, having been through a particularly difficult time recently, but I will agree with many of the others, remember not to be so hard on yourself, or other family members, you all, I'm sure do the best you can, TP is a really good place for asking question, venting and sharing frustrations. No one judges you here, we know that we all do the best we care, we all juggle every day life and our many daily challenges, some of the most important things I've learnt in the last few weeks are that you aren't alone, and it's important to keep on top of your mental health, as well as your dad's.

Dad was having a bad few days on my last visit and communication was really difficult, rather than leave and miss out on time with him, I picked up a book from the quiet area - Wind in the Willows, I read several chapters before he dozed off, it felt like a complete role reversal, it's a book he's read to me many times as a child, but I was able to take comfort from the slight smile on his sometimes expressionless face.

Take care, and remember to be kind to yourself, as well as others xx
Therapyrunner, it is lovely that you and dad are able to share these moments. I have suggested reading together to my dad, but his interest in anything is very limited at the moment. Books are something my dad and I have always had in common - he read so much to me when I was a child - and I would love to be able to still share this with him now. Maybe I'm going wrong with asking, and should perhaps just do it - we might both be pleasantly surprised xx


Registered User
Dec 8, 2011
North West
I would think it's worth a try victoriaplum. One of my wife's carers reads to her. I was sceptical as I've tried it previously and not got much of a reaction. But she is still doing it after several weeks. She stops if/when Sue falls asleep, which is understandable but maybe it's just relaxing to hear the voice of the person reading. And in the light of your 'history' with your dad it might trigger something positive.


Volunteer Moderator
Dec 15, 2012
Hi victoriaplum
it's great that you are open to trying anything with your dad
I know you've written
he's very resistant and keeps saying he doesn't want to do anything
but take heart from the fact that whatever he may say, you clearly have got him to join in with you at times - I know if my dad truly does NOT want to do something, there's no way he will
so definitely instead of asking, just behave as though he will comply and he may well do so
go with this
perhaps just do it - we might both be pleasantly surprised
best wishes


Registered User
Dec 25, 2012
Hi all,

Hope everyone's ok. Been a bit slow to respond as it's been a really busy week and I have spent the majority of it with dad. I have calmed down a bit. Unfortunately, this might be because I've started to accept that things are as they are and that this can't be reversed. What a horrible realisation that has been. TherapyRunner, you must have noticed the tension in my posts (not difficult to spot, I'd imagine) and I'm ashamed of the way I've vented my frustrations. I have been very frustrated with everyone and everything. Ange, my dad has also made the 'if I had a gun' comment. It is really hard to hear and so upsetting to see him like this. I'm glad it's not all doom and gloom and you get to see your mum as she once was. We are all really trying to keep dad occupied with reading to him, doing crosswords together, going for short drives in the car, but he's very resistant and keeps saying he doesn't want to do anything. He told me that if he wants to just sit and stare I should leave him do it

Hi, you do sound more relaxed, we all have good and bad days, some days I could scream and cry all day other days I can accept all that is thrown our way, I say accept but really it's more that you deal with what life has thrown your way. Never be ashamed of venting on here, nobody will judge you, we have all been in your shoes that's what makes this such a great forum, there is always someone to answer your questions or give sympathy/empathy when it's needed. Also try to make time to do things that make you happy, don't let this vile disease swallow you too xx



Registered User
Feb 7, 2016
Thanks all - I will definitely try reading with dad. We'll make a start tomorrow and see how it goes. Ange, I do feel ashamed because my anger has made me a not very pleasant person at times over the past couple of months. It's easy to get lost in thinking why my dad, why us? - it's easy to forget there are so many other people going through this too. Does the crying every stop? I have cried every day for the past two months, mostly at night when I'm on my own.

A question for you all: do any of your relatives suffering with dementia experience extreme fluctuations in temperature? My dad can complain of being boiling one moment and freezing thirty seconds later. We can spend all day (like today) taking his jumper off, putting it back on, opening and closing doors, getting damp flannels for his head, putting blankets on and off. It is so frustrating for him - he says he doesn't know what to do with himself. The specialist said it is part of the hallucinations - that he has a 'perception' of being hot and cold, yet sometimes he'll be sweating and we've had to change t-shirts that he's only had on for a couple of hours. Does this sound familiar to anyone, and does anyone know how we can help dad with this?

Thanks to you all, by the way - you are a great source of comfort xx

Sue J

Registered User
Dec 9, 2009
Hi Victoriaplum

Sorry to read about your Dad. I experience temperature fluctuations just as you describe your Dad and no it isn't a 'hallucination' but a real change, you don't sweat because of hallucinating about it:confused: I have learnt to wear easy clothing and easy layers. I have a fan at hand which I don't always remember to use.:rolleyes: I go to bed with a hottie and an ice pack:rolleyes: so I can grab whichever one I need to help stay comfortable which is so important in enabling me to stay calm nd to sleep. Also I do try and drink a lot of water, and try and keep some cold at hand as drinking that seems to help. It h taken me a long time to get to grips with coping with it though and I constantly forget what will help:(

I hope it eases for him and you, sometimes mine is worse than others.
Best wishes

Staff online

Forum statistics

Latest member