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Hello from a newbie - Carers UK Forum

Hello from a newbie

Tell us a bit about yourself here.
Hello all and thank you for allowing me to join.
I am a 71 year old female looking after my 75 year old husband.
Neil was diagnosed with Parkinson's some years ago.
Recently he had to have a catheter fitted on a temporary basis, which has since been removed, 2 weeks prior to this he had his first hallucination, which was found not due to a urine infection.
Over the last 6 weeks he has had many bouts of hallucinations and false perceptions, also confusion.
My daughter is a nurse and advised that we made an appointment with our GP because his Parkinson's team were not available. The result being she is very sure he now has Lewy bodies dementia and we are waiting for an appointment with the mental health team.
We are now putting things into place for example power of attorney.
What I really want to ask us when a person has these delusions or hallucinations what is the best way to react to him. Do I say I don't see them or just brush them off.
I really would appreciate any advice.
Hi Norma, welcome to the forum.
Can I suggest doing the POA must absolutely be your top priority, or it may be too late. Make an appointment to see a solicitor as soon as you possibly can, who will first need to do a Mental Capacity Assessment to see if your husband still has the capacity to grant a POA. Otherwise it's a more expensive and difficult process. The diagnosis means that your husband is now classed as being totally exempt from Council Tax, on the grounds of "severe mental impairment" and he may also be entitled to Attendance Allowance.
Others will be along later with advice about the best way to respond to your husband.
Hi the powers of attorney are at this moment in time being processed.
Neil gets attendance allowance.
I will look into the poll tax situation when he has been to see the mental health team and they confirm what the Gp thinks.
We have appointments at the end of Novemer with Neil's neurologist and also the Parkinson's nurse. Neil also suffers from REM sleep disorder which has resulted in me having to move into another bedroom, on the doctor's advice, so I can get some rest. Thank you for replying. X
Hello Norma and welcome to the forum :)

You ask about dealing with your husband's hallucinations and confusion -

I cared for my Mum who had Alzheimer's and she also had both :( I, like many others caring for someone with dementia, found that contradicting her didn't help at all - to her they were very real. Generally changing the subject had a better effect - so when she was telling that there were squirrels in the grandfather clock I'd just say "OK Mum I'll have a look later but how about a cup of tea first ?" by the time we'd made the tea, found a piece of cake to go with it etc she'd generally forgotten about the squirrels. Mind you some of her hallucinations were harder to discount so simply - especially the one where she had been abandoned in a large railway station (that one was usually in the middle of the night !).

There is a publication called "Contented Dementia" (available via Amazon or a good book shop) which advocates going along with the confusions and not correcting or contradicting and generally living in "their" world. I know that some people have found it very helpful, certainly worth a read.

The other thing I might suggest is reading this forum topic - https://www.carersuk.org/forum/specific ... -blog-8635 it's written by Norman McNamara who has Lewy Bodies Dementia - it gives tremendous insight into the disease from the sufferers point of view - I know it's a long topic and sometimes hard to read but it's worth it
Thank you susieq for your reply.
I appreciate what you have said and it has helped me a great deal.
I also will look into the information you have included.
The strangest part I find about Lewy bodies is that normality comes again and it's as if nothing has happened.
I said to the doctor "we really need to know what we are dealing with" and she agreed.
I am hoping when we have seen the mental health team things will become a little clearer for us.
Thanks again Norma.
The strangest part I find about Lewy bodies is that normality comes again and it's as if nothing has happened.
It's the same with any form of dementia in the early stages and the 'normal' periods can be quite long before there is another deterioration. There are drugs available that can 'slow' the progression but the MH team Consultant will be able to give you more information on these - in the meantime I recommend reading up all you can on Lewy Bodies and dementia in general (Knowledge is Power !) - the Alzheimer's Society's (don't be put off by the name they cover ALL the different types of dementia) website has lots of very useful information and advice.

https://www.alzheimers.org.uk/
Hi Norma,

Welcome to the Forum; you will find lots of info and support here.

I cared for my mum with mixed dementia (Alzheimers / vascular) who sadly had frequent delusions. As Susie says, to the sufferer they are very real and nothing you say will make it otherwise. Sadly, they cannot enter into our world so it is much easier to enter into theirs.

When mum told me that a group of children were in the room singing carols, I asked her what carols they were singing and if they were any good. We both had a moan about their uniform being scruffy (something mum always hated). By the end of the conversation, I sometimes believed they were real :D

It is not easy but I learned the hard way that humouring our loved ones and even using "love lies" was the easiest option.

Do you get much support caring for your husband? Caring can be a Marathon sometimes and you will need to pace yourself. It may be worth asking the mental health team what is available in your area - day care, carers groups etc.

Good luck with the appointment, Anne
Hi Norma welcome to the forum i totally get where you are coming from as my hubby was diagnosed with Lewy Body Dementia on the 8th August this year he is 58 we are still trying to get things sorted and things put into place like your hubby mine was hallucinating and having delusions really badly it was exhausting as he had what they call sundowner's syndrome where they wander all night and hardly sleep so we lived in a nightmare for ages trying to get someone to sort out medication :roll: especially for his sleep problem eventually he was put on Mirtzapine lo and behold it worked now he sleeps which is an added bonus anyhow i felt while he was delusional i had to try and help him understand that they were not real those people living under my shoe rack because he felt they where telling him to keep working and moving all kinds of furniture etc in our home placing things here and there so i tried to talk constantly reassuring him this was all in his mind plus if i couldn't see these people or animals etc they were not real and told him that in no uncertain terms he was to shout out to them go away you are not real i must admit this worked he eventually came to realise i was telling the truth and trying to help him overcome all this awful anxiety it was causing him plus you are totally spot on with the behaviour of this type Dementia going back to normal as my hubby at certain times looks and acts as though he could take on the world and i swear some people think i am lying but then it changes back again the likes of when we are out in a shop say and he is looking totally lost doesn't have a clue where he is plus the days when his memory is very vague over things and he is so child-like its unbelievable it still shocks :shock: me i become very angry and yes will admit cry constantly :cry: It is very confusing :? I hope this has been of some help Take Care xx
I would like to thank you all for your comments I really appreciate them.
I will read and learn more than I already have.
I think the hardest parts have been when he asked me if I was still single and what relationship was I to him.
When are you going home? was another thing he said.
I made a family tree to help him, a really basic one.
I guess it will be a steep learning curve.
The feeling of loneliness has been hard because he sleeps nearly all day. His jerking is constant when asleep and distresses him when they wake him up.
Well thank you once again soft hugs to you all. Norma. X
Hi Norma yes you right there it is a very steep learning curve and loneliness creeps in at every opportunity you have to watch that one as it can become very over-whelming i was at work and this loneliness had engulfed me all day that i had a lump the size of an apple in my throat trying to keep myself from breaking down fortunately i work with a lovely bunch of lasses they did everything to try and make me feel happier and fully understand i will have these days as for that fidgeting and restlessness while asleep is part and parcel also as we have ended up sleeping in seperate beds as hubby cannot be that close to anyone for long because he becomes very agitated it is a totally different life to what we planned together as you probably did do not hesitate to ask anything you feel unsure of i will try to help as any one on this forum will as people have been great with my situation helping all they can actually a godsend at times ((((Hugs )))) to you xx