Dad has DLB

[Pippen33]

Hi All,

This is my first post on here so apologies if it's in the wrong section!

There is so much to say but will keep it brief as possible. My dad had been experiencing some speech difficulties since the back end of 2018 but other than that, was absolutely fine. He'd had some appointments/scans but all in all, nothing major showed up.
Nov 2019 he started hallucinating and things have gone rapidly downhill from there. Consultants have since diagnosed this to be Dementia with Lewy bodies. It's now like he is dreaming whilst he's awake and sees all sorts of strange things and is completely delusional about them (Not to mention the confusion)

Things got so bad, for the past month he has been on a dementia ward whilst the dr's attempt to find a suitable medication to help things - we seem to be running out of options here though.

I find it hard to comprehend how someone could be fine 6-7months ago and now doesn't even recognize themselves in the mirror for example. It seems like a very rapid decline. Just wondering if anyone else has experienced a similar rate?

Finally, how do others cope with a loved one having this terrible illness? I don't seem to be able to go 5mins without thinking about it, which is really impacting me in everyday life such as work.

Any advice/feedback/tips appreciated.

Thanks

 

[Bunpoots]

Welcome to Dementia Talking Point @Pippen33 although it's not a club anyone wants to be in!

Your dad does seem to be progressing quickly. My mum did the same but she had a massive stroke soon after diagnosis which catapulted her from early to late stage dementia overnight. We have other members with lived ones who have DLB so they will know more than me.

I'm not sure that any of us do cope with having a lived one with this horrible disease but I've found that being able to share with the people on this forum who understand how it is helped a lot. TBH I wouldn't have come through without them.

 

[Pippen33]

Thanks for the reply @Bunpoots and sorry to hear about your mum, can't have been easy to see.

It definitely helps to be able to talk about it. I have read some posts and that's what prompted me to join as you can relate to a lot. Hopefully can get an insight into other members experiences with DLB on here.

 

[nellbelles]

Hello @Pippen33 and A warm welcome to DTP from me also...
I‘m pleased you are finding the forum a useful place for support, I hope now you have found the forum you will continue to post..

 

[Pippen33]

Thanks @nellbelles I will certainly do my best. Who knows, maybe one day I can help someone

 

[Metalpetal]

Thanks @nellbelles I will certainly do my best. Who knows, maybe one day I can help someone

Hi Pippen, just to say hello and give you a virtual hug! It’s a worrying and bewildering time for you, and I’ve had a similar few months with my mum. Although she hasn’t perhaps declined quite so rapidly, we only found out that she had ‘possible dementia’ in late April, and we’re already at the stage where she needs a full care package and are not sure she’ll cope at home even with that.

This forum has been SUCH a help to me, and I’m sure it will be for you too. Like you, I feel too early in my own journey to be able to give much advice and help in return yet - but hopefully we’ll be able to do that as time goes on.

Take care...

 

[Pippen33]

Hey @Metalpetal virtual hug right back at you! Its a really tough period, not to mention all the covid stuff going on.

Sorry to hear about your mum, does she experience hallucinations too? I guess keep an eye on how the home care package goes but from what I'm seeing and hearing, sometimes home is just not the right place. I'm hoping my dad can one day come back but I'm also preparing for the fact he will have to be in full time care at some point.

 

[Metalpetal]

Hey @Metalpetal virtual hug right back at you! Its a really tough period, not to mention all the covid stuff going on.

Sorry to hear about your mum, does she experience hallucinations too? I guess keep an eye on how the home care package goes but from what I'm seeing and hearing, sometimes home is just not the right place. I'm hoping my dad can one day come back but I'm also preparing for the fact he will have to be in full time care at some point.

Yes, this would be awful at the best of times - but during Covid just adds that extra layer of awfulness!! I’ve been focussing on my health a fitness a lot these past few weeks as a coping mechanism - it feels like about the only thing I have control over at the moment, lol!

Yes mum has hallucinations too - some really quite major ones! I’m still learning the difference between delusions, hallucinations and confabulations to be honest. But with mum her main one is that she ‘usually’ thinks she’s somewhere other than the actual reality. She’s been in hospital these past six weeks but most of the time she’s been convinced she’s either ‘at work’ in an office or for a few days she was on a stranded train. I’m assuming that’s hallucinating? This last week she has known she’s in a hospital, which is good. But she thinks it’s some sort of special type that’s been built above a house somewhere in Edinburgh - and told us very lucidly and matter of factly that she’s having one built above her own house. We’re getting used to these conversations, but it is tough to hear her sometimes!

Take care, and if you ever need to let off steam with another person who’s new to all this, feel free to get in touch!

 

[Pippen33]

Sorry @Metalpetal for the late response, as well as all the stuff going on there's work to contend with too!

I have to say, whilst my dads hallucinations may be different in terms of content it sounds almost the same in how he experiences them. He also mentions work a lot, like 'Ah I dont want to go to work today' etc but he retired ages ago.
There have been so many different ones he's had.. the worst is where he said he sees a man in the house at night and driving away in the morning (I guess this is the hallucination). However, he believes this man is my mums boyfriend and that she's being unfaithful (I guess this is the delusion). This really made things hard for all of us as he was fixated on the idea and got very upset... Whatever it is, we just don't find any way of convincing him otherwise and is why he's in hospital I suppose. Very sad

Hope you been well otherwise and keeping up the fitness, I might have to do the same! Also same to you, reach out if you need to vent

 

[JuniperJack]

Hi ? @Pippen33 - how are you? I am so sorry to hear about your Dad that sounds really tough and am sending love and strength.

My mum first showed signs something was ‘up’ around Christmas and was diagnosed with DLB just 5 weeks ago - and then 3 weeks ago suddenly developed what we now think is Capgras Syndrome which is where you think someone close to you is a duplicate or imposter, and she doesn’t understand who my dad is (or refers to him as ‘the other dad’). It’s all happened so very fast. I thought these things took years to progress, and she’s only early 70s... We’re all feeling like we’re scrambling to understand and catch up.

And my poor Dad is in lockdown stuck at home caring for someone who thinks he is ‘that man’! He’s being incredible but theres not much we can do from a distance other than keep in touch. (As an aside I am convinced that lockdown has massively accelerated things for my mum - breaking all the usual routines and activities - and of course she doesn’t understand properly why).

I know everyone’s path with this is different but I hope it is helpful to some extent to share. Do let me know how things go. There seems to be lots of nice support on here.

Take care x

 

[nae sporran]

Welcome to the forum @JuniperJack. Sorry your dad is having such a hard time, I think few people have suggested lockdown and a break in routine have made dementia symptoms worse, my partner seems to be struggling too. It's good to read you are already aware of the support here.