Hi, my Dad has advanced Parkinson’s disease and over the last few months has started having delusions / vivid dreams, which seem to be mostly focused on my Mum (he is in care) - when the care home can’t settle him they call my Mum and it’s like he’s a different person - he says the most awful things to her, accuses her of sleeping with other men and taking drugs (she’s 78). It would be funny if it weren’t so utterly distressing, she is in pieces about it, and nothing we say can settle him or make him realise it’s not true.
Is anyone else dealing with this issue and have any advice please? Thank you.
Hi SR,
Welcome to our forum community. We’re sorry to hear things are so difficult of late, but we can assure you that you are not alone in dealing with your dad’s hallucinations, and he is not alone in experiencing them. You’re likely to hear from individual members soon with regard to similar challenges, but we’d also like to point you toward our website, where you will find answers to your questions easily. Have a look at this page for a start: Hallucinations and delusions - as a symptom | Parkinson's UK.
You are also welcome to call us on 0808 800 0303 to speak with a friendly and extremely knowledgable advisor. The call is free and confidential and the team is universally lauded by our community here.
With our best wishes and warmest welcome,
Jason
Forum Moderator
Hi SR,
Wow, I am so sorry to hear what is happening to your dad.
The vivid dreams I can understand, they are a symptom but the delusions seem strange.
Has the neuro said anything as it seems as if your dad may have some other aspect other than PD as well
Thanks Clive for your message.
Apparently delusions are something that can happen in Parkinson’s, and from below from Parkinson’s UK website it makes sense in that my Dad’s delusions are focused on jealousy around my Mum.
“You may feel jealous of someone you love or a close friend. If you have a partner, you may suspect them of cheating on you. This can cause severe jealousy in some people.”
However, we really don’t know how to deal with them. He has no memory of them afterwards or the awful things he has said. He only gets to see his Parkinson’s consultant once a year, and his Parkinson’s nurse once a year, but we are trying to make contact to get some advice and help, for both dad and us.
Rather challenging!
Thanks Jason, appreciated.
1 Like
Well sadly i can fully empathise with you and in particular your mum. My husband, who lives at home with me, has suddenly over the course of maybe the last few months, been having more intense vivid dreams. They can indeed be an unpleasant side effect of longer standing Parkinsons disease, can be more common if a person is prescribed Dopamine agonists…such as ropinerole. NOT all people will experience these symptoms, quite a low percentage i have read. But those who do, and their loved ones can have a very difficult time. Your dad will probably not even realise he is saying distressing things to mum. But at 78, this must be so hard to cope with. Im 68, and im the middle of such a similar crisis. There are medicines out there. For example Quetiapine , which , im told, can help subdue these symtoms. So far, not working for us…all i would say, for you and your mum, with dad in care home, he is safe and been helped by staff. Your mum and you and your family need support for the trauma it causes you. And it is traumatic. I find help sharing and reading others stories on this site. I feel less isolated by this. I always like to stress…not all pwp will experience this. I know its hard for pwp reading the potentials out there, but every one with PD has their own unique set of symptoms. Seek all the help you can.Carers groups and forums are out their. Your mum might get support there. You also can get good help and advice on Parkinsons uk websites and there phoneline.
Take great care, i hope things eventually settle.
Thank you so much for your kind response, I’m so sorry you are also going through this.
We are seeing the doctor with my dad tomorrow who will liaise with his consultant, so hopefully we can get some meds to help.
I’m so appreciative of comments and advice, and the knowledge there is help out there, as each new symptom can take us by surprise - and as you say, not everyone with PD will get all these symptoms, it does seem to be a very individual‘ illness. Sending best wishes to you and your husband,
1 Like
Yes, more than challenging, it is debilitating for all three of you.
As Jandc suggested, is it not possible to get your dad into a care facility?
It makes no sense that you would have to wait that long to see a neuro.
I live in South Africa, and can get an appointment with a Neuro within a few weeks if necessary.
I am on a private medical aid so that will obviously make things easier.
My son and daughter live in the UK, and I know they pay an additional about 110pounds a month to get to private doctors.
Is that not possible?
1 Like
Hi SR, my husband did this when in hospital - said such awful things to me… Any strange environment gives him dilerium after a little while. He also has (or had, not so much evident now) REM sleep disorder. His neuro took him off Pramipexole which seems to have helped but a strange or over stimulating environment will always bring the dilerium on, which is very hard to manage.
1 Like
Hi SR,
I am so sorry to hear. I am afraid I can’t offer any advice, if not that I have seen this happening with other Parkinson patients, as you also noted. From what I read, it can be both a Parkinson symptom and/or a medicine’s side effect.
It must be horrible, and I am so sorry you are going through that.
I related with the difficulties of seeing doctors though. As public healthcare is getting worse and worse where I live, getting an appointment with my mum’s neurologist (public or private) is more and more difficult.
It seems that the now the priority for you is to have a doctor see your Dad and hopefully give some recommendations (maybe an adjustment in therapy?). Keep us posted.
Best wishes,
Lara
We’re the medication altered at around the same time? Or does changed ?