Caring for Lewy Body Dementia.

[TonyR]

Hi Everyone,
I’ve not used this forum before, so hello.
I'm impressed with the level of support found on this & other forums, so thanks for being there.
I’ve been looking after my mum who has had Lewy Body Dementia for some time now, although we didn’t have a name for the condition until recently. There was a lot of confusion at the outset because other unrelated symptoms came up at the same time as well as things that could have been other diseases, so we went down the wrong tracks. Some advice we got was just plain wrong, in retrospect.
Physically, she’s in good shape, but mentally it’s a very changeable picture, with some periods becoming very challenging.
If anyone else is in the same position, I’d like to exchange strategies about you cope, particularly with the confusion the person you care for suffers from.
The advice I’ve seen for handling situations is often quite generic, so to share ideas about a real situation would be helpful.
All the best for now,
Tony.

 

[Áine]

hi Tony

welcome to TP

there's quite a lot of info more specific to LBD at:

http://www.lewybodydementia.org/about.php

but i think a lot of TP advice can be applicable to people with LBD as much as any diagnosis. my experience is that it's more about the individual than the actual diagnosis ...... though others may see it differently.

 

[KenC]

Hi Tony.

There is also a new charity called The Lewy body Society which is affiliated to the Alzheimer's Society at the, lewybody.com. This is a british based charity and started up this year for people with Lewy Bodies.
As I have this illness myself I have found quite a lot of information on this website.

Best Wishes

Ken

 

[noelphobic]

http://www.lewybody.org/

is this the one Ken?

 

[Tender Face]

Hi Tony ... don't know if I can help (not sure I qualify as someone who 'copes' ) but mum's diagnosis is 'Alzheimers with Lewy Bodies'. Over the last twelve months or so one of the hardest things I find to cope with is her fluctuation between 'lucidity' and, well, what do you call it, 'unlucidity'????

Living in a constant state of 'expecting the unexpected' is tough ..... are there specific examples you can give that you need help with? Everyone here will offer what they can .... or, like me, just admit it's so hard .... but so helpful once you know you're not struggling on your own .....

Ken, Áine, Noelphobic, thanks for the links ... one thing about this journey - you never stop learning!!!!

Love, Karen, x

 

[Áine]

There's also this yahoo group for LBD caregivers:

http://health.groups.yahoo.com/group/LBDcaregivers/

Not visited there for quite a while, but when I was there it was quite good. It's mainly American though ........ and they tend to approach things a little differently there. Worth having a look to see what you think though.

 

[KenC]

Hi noelphobic,

That's the correct website.
I was given it by someone at the Alzheimers Head office the other day, because they knew that I had Lewy Bodies and wondered if I was interested. One thing about this illness you never know which way it is going to go you just have to follow and hope for the best. Some days are good and some are extremely awful. Sometimes I have said things which I wish I had not, but at the time the brain seems to over ride my mouth, and the rest of the body for that.
At least my wife is very understanding which to me is a godsend. It just worries me about the times in the future when the wheels come off completely.
Best Wishes

Ken

 

[noelphobic]

Hi noelphobic,
Sometimes I have said things which I wish I had not, but at the time the brain seems to over ride my mouth, and the rest of the body for that.
Ken

I'm always saying things I wish I hadn't Ken, so you're far from being alone there. I think the saying that I need to remember is something like making sure the brain is in gear before the mouth is in motion. Never can remember that until it's too late

 

[Skye]

Sometimes I have said things which I wish I had not, but at the time the brain seems to over ride my mouth, and the rest of the body for that.

Ken

Hi Ken & Brenda

OMG I'm a member of that club too! The saving grace is knowing when we've done it, and having the courage to put it right.

Love,

 

[TonyR]

An example...

Hi Karen,
Thanks for your post of the 25th. Much appreciated.
Mum hallucinates written messages & hears me talking most of the time. Usually, it's all fairly positive stuff, & if she asks (real) me for a response, I can follow the advice I've seen & engage, support & distract. Phrases like "don't worry" & "let's see what happens" usually are enough, even though I don't know what it's all about.
Occasionally she objects to what I've apparently done or said & demands an explanation. I try to fudge it or put it off, but she won't let it drop.
If I ask for details, she gets very upset, taking the view that not only have I said something abusive, I guess, but now I'm pretending that I don't know what I've done. She asks if I'm trying to send her mad.
I wonder if you or anyone else has met this & has a good strategy.
Whilst it only happens occasionally, it's enough to put me on edge waiting for the next one.
She's so gentle & kind most of the time, that makes it all the more alarming.
Any ideas?
Of course, If I can help you or anyone, I'll offer what experience I have, but I feel like I'm not very good at this caring role. It's not something I've planned to go into!
All the best for now & thanks again,
Tony.

 

[Tender Face]

..... but I feel like I'm not very good at this caring role. It's not something I've planned to go into!

Welcome to the club! The one with no manual! And if there was it wouldn't be worth the paper it was written on!!!!

So much of your post made me smile Tony ... saw sooooooo much of my own mum there .....

Yup - always MY fault when things go wrong (smallest things like not enough pepper in the soup! ) ....... and I can understand mum is trying to defend the fact she doesn't like to admit she cannot 'manage' herself so needs someone else to blame and 'yours truly' is first in the firing line of course.....

.... ... BUT and big but here ..... I believe you have to 'keep up their confidence' in your/my/our abilities..... I've used a lot of the 'Don't worry about it' spiel ... relying on mum to have forgotten what it was she was worrying about anyway in no time ..... now I add a touch of 'Don't worry about it mum, I'll deal with that for you ....' and often get a positive sigh of relief 'Oh, will you?' (with gratitude instead of persecution!) .... I think it's a case of 'seeing what works' - and then just when you think you've got it cracked .... be prepared to be wrong again......!!!

'Fudging' can be good ..... but sometimes I find mum needs a sharp little verbal rap herself! And sometimes the truth actually works!!!!

Most important, trust your own judgement ..... have the confidence to 'think on your feet' - knowing you might get it wrong sometimes ..... and that it's not the end of the world if you do!

Love, Karen, x

 

[Margarita]

Occasionally she objects to what I've apparently done or said & demands an explanation. I try to fudge it or put it off, but she won't let it drop.
If I ask for details, she gets very upset, taking the view that not only have I said something abusive, I guess, but now I'm pretending that I don't know what I've done. She asks if I'm trying to send her mad.

Yap that my mother won’t let it drop , have to explain it to her slowly or she won’t grasp what I am saying and if I am tried , worried, fed up frustrated you name it she pick up that vibe from me and she get more agitated and like your mother say I am the mad one .

I can laugh smile about it now looking back, but when your living it in, in that moment you do wonder, I did anyway, am I going mad? Is it me?

And then I found TP and read load of the posting and think god my mother does that , so when she use to do those things you descried a cram came over me within me, and I found they is no right wrong way , as every one so different , but similar . that cram within me seem to help me to help my mother more , because the more crammer I am the easier it is to handle the hard time with my mother when she get so confused with every day
life



Ps I am no angel, so can lose my temper, but when I am feeling like that I walk out of the room or sing a song in my mind saying I ‘ve got to go to the loo then I go back in the room and say pardon what did you say , she forgotten or not and I explain it.

another PS


Oh and yes they are challenging , they behaviour. but try not to challenge them back your only end up getting frustrated within yourself, while in the next moment they are asking you to forgive them, I had many moments like that in the past, and no matter where your read other people say how can it be the disease, its not the disease that making them do it. It is it really, really is. Medication lucky for my mother stops a lot of her challenging behaviour towards me, if it was not the disease, why then does the medication for last stage of AZ stop it.