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Anyone caring for someone with Lewy Body Dementia? - Carers UK Forum

Anyone caring for someone with Lewy Body Dementia?

For issues specific to caring for someone with dementia.
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,
Hi Tony,

Welcome to forum.
I am not in the same situation as yourself but that does not mean we cannot still try help and support you.I have been looking on internet about Lewy Bodies and trying to find you some information.

The Parkinson's Disease Society (PDS) offers the same support to people with dementia with Lewy bodies as they do to people with Parkinson's disease.This includes a freephone helpline, staffed by nurses, which can offer advice, support and a listening ear. The number to call is 0808 800 0303 (Mondays to Fridays 9.30 am – 5.30 pm). Information and advice is also available on practical issues such as insurance, driving, financial matters, benefits, respite and
residential care.

http://www.parkinsons.org.uk/HomePage.a ... deID=89586

The above link will take you to the PDS home page Tony and if you look on the left hand side it will enable you to find out if any help in your area.

Keep posting to let us know how you get on and I am sure before long some member will post who will understand some of what you are going through.

Chin up
Hello Tony

I just like to add my welcome to the forum.

I remember we had a member from the old forum who cared for their partner with Lewy Bodies, not sure whether they have re-registered yet, but I'm sure if they have they will be able to advise you. In the meantime I hope Rosemarys great searching helps you.

Keep us posted
Take care
Maryann x
Hello Catwit

Thats one of the things that is great about this forum finding Carers who will be able to share revelant experiences with each other.

My Mum has been on Lorazapam for a good few years now and it worries me. The doctor has suggested reducing it and I have managed to by 1mg, its not a great deal, but as Mum is only 54 I often wonder how I'll manage to get her off them completely and what will be the replacement? I think that I shall start a new topic about this and sorry if I have gone of the original topic.

Hope that you and family are well
Take care
Maryann x
hi maryanne
my mum takes just 1mg of lorezpam, I often wonder whether it would stop being as effective and she would need a higher dose. The consultant placed mum on the medication, the only other substitute I have had was diazapam(spelling is wrong). At the moment I am grateful for the help it has been to mum, which far outweighs the disadvantages, other alzheimer drugs just made her worse and with the lewy bodies her shake became unmanageable.
HI everyone,
First of all, thanks for the posts. I'm quite moved. I have so little to do with others on anything other than a functional level, it's amazing that there are so many people out there who take the trouble to help others. So, really, thanks very much. You've helped already.
Thanks for your reply. My mums on Galantamine 16Mg slow release daily. Whenever we change the type of tablet, she gets much worse for a few days. Even switching from tablets to capsules of the same strength makes her lose it. I dread the hospital not having the same stuff.
She's psychotic most of the time, seeing writing & hearing my voice. It's OK when the mesages are good, but a small part of the time (thankfully) the messages are worrying & she's gets frightened or angry or upset.
I'm not sure how to handle the impossible questions. For instance, the other evening during dinner, she pointed to a blank surface & asked "what do you mean by that"? in an angry voice. As I haven't a clue what the issue is, I try to fudge it with "don't worry, everythings OK". On this occasion, I followed up with "we'll talk about it later". It was such an issue that my usually mild mannered mum said "No, let's talk about it now." When I ask what the problem is, I get " you know very well what the problem is" & we get into the position that, not only have I written or said something that has offended her, but I'm also trying to make her feel mad/stupid or whatever by changing my story or pretending that I don't know what she's on about. That's happened many times. "Why are you doing this to me", is the reply & there's a lot of upset.
The advice I've seen is to engage & distract, but if you have to explain something nasty you've said of which you have no knowledge, it's very difficult. On low level problems, I rub her back & let time erase her memory, then we move on. But when it's energised & demanding a sensible response I can't find anything.
I hope this makes sense. Do you have the same issues?
Hello Tony

Think we all know how much of a struggle caring can be and I guess thats why Carers try to help and support where they can. I'm glad that you feel you can share and gain experiences and support as caring can become very lonely.

You seem to be managing your Mums confusion very well and I know how much patience it takes, especially when you don't know what your conversation is suppose to be about. Like you I always have to try and distract my Mum from what is in her thoughts at the time of confusion. At the minute when she is really bad I lie her on top of the bed and put a sound machine on birds/rainfall etc. and rub her face, it doesn't work all the time as Mum goes through phrases, I have to keep trying new techniques. I think the sound helps because it gives her mind something to focus on rather than her thoughts...I'm confusing myself here.. Image

Hope this helps

Take care
M x
hi again
Thankfully mums has a problem with the man upstairs, not me. she is convinced he comes into the flat uses her shower and other things he says nasty things and he gets through to mums flat by drilling a hole in the cupboard, he has also tried to gas her all fictitous I might add. I usually say well I am here now, and you will be safe. I do find it always happens about sundown and this is when I find the lorezpam helps quieten her mind. Mum loves music so I usually put music on for her. When none of this works then I am completely honest and say its the alzheimers causing it. Ihave been really lucky that mum goes to day care mond to frid and I applied for direct payments this enabled me to employ someone four hours a day to give me a break. I am finding the carer forum really helpful, knowing that your not alone is really good as others get fed up of listening to you harping on about mums condition. When I get time I am going to visit the local branch of carers uk although I have been trying to get since december.
good luck
There are specialist nurses who advise about dementia. They are called Admiral nurses. ( the name is from how the funding got set up but they are like Macmillan Nurses). Because you live in London you might try The Latimer Day Care Center on Hanson St, near Portland Place. They have one- Rachel Ross. You probably need a referral from the District nurse or your GP to access the service. I'm not sure whether you'd be elibible based on where you live. I would try getting a referral from your local person first. If you get stuck you could call Rachel and she could point you in the right direction. Number for Latimer 020 7612 1672