This is my first time posting on this forum, and I’m hoping somebody might be able to offer me some advice. My mother is aged 72 and was diagnosed with PD nearly 4 years ago. Over the past few months, her delusion/hallucination symptoms have really ramped up, and my family and I are struggling to know how to handle things. She lives with my Dad, who is her age and her sole carer, and she has been accusing him all sorts of things that are untrue. Over the past few days alone, she’s told me that he is installing surveillance cameras in their home and garden so that he can monitor her, spending her inheritance so that she has no money left in her own name, and she has also phoned me up to say that he is mentally ill and needs to see a psychiatrist asap because she’s worried that he is going to take his own life. This evening she went over to a neighbour’s house in her dressing gown and slippers to seek sanctuary because “she was worried that the police were coming” and that she “needed to get away” from my Dad because “he is so controlling”.
Does anybody else have a relative with PD who behaves in a similar way and do you recommend any particular way of managing these situations? The level of paranoia is becoming unbearable and she is so suspicious of people, my Dad in particular. It’s so upsetting to see her go downhill like this. Her next consultant appointment is roughly a month away; is there any medication available to suppress these kind of feelings? Thank you for taking the time to read my post.
Welcome to our community forum. We’re sorry to hear your parents are going through these struggles.
Unfortunately these types of behaviors as a result of delusion or dementia or medication are not uncommon with Parkinson’s. You can read more about it here: Hallucinations and delusions | Parkinson's UK.
We would recommend reaching out to your mum’s medical team to be sure this is not a medication issue. For help with this and other things you may wish to contact our helpline on 0808 800 0303. One of our advisors would be glad to assist you, and you may be surprised at the resources they can provide.
With our best wishes for your family and our warmest welcome,
Hi jobloggs and welcome to the forum. Paranoia and delusions is indeed common with parkinsons. As jason as said, there are many helpful leaflets to be be read online within the parkinsons uk web site, and you can request hard copies to be sent out if thats more helpful. Many things can cause paranoia and deulsions, including infections , so you should contact your gp first to rule out these easily treated problems. Thereafter, you must contact your parkinsons team. I wouldnt wait a month. If its a medication issue, they can remove a drug immediately or alter a dose, obviously they will need to know whats been happening so they can assess your mums parkinsons condition. My husband had a bad reaction to the drug Stanek many years ago now. He had awful paranoia, delusions, hallucinations. As soon as it was stopped he returned to his normal self. He is still prone to a little paranoia, and doesnt respond well to dopamine agonist medication. I would say, dont despair, seek advice from all sources, and i would be hopeful of some relief of your mums worst symptoms soon .Do let us know how you get on. Best wishes
Thank you @jason.mod and @Jandc for your quick replies. My Mum has been on the same medication for a while now, so I’d be surprised if it’s a reaction to that, but I suppose anything is possible, and it’s interesting to know that an infection could also be a possible cause. We will try to get her seen by a GP asap.
I’ve tried contacting her PD medical team in the past with little success, and was even told that unless it was an emergency that there was nothing they could do until her next appointment… However now I feel that we are reaching the emergency/crisis stage. Bad timing with it being the weekend at the moment, but I will contact them again on Monday to see if we can expedite the process and get her seen much sooner.
Hello JoBloggs … My Parkinson’s drug [Sinemet] causes real dreams, very disturbed sleep & nightmares. I often wake up thinking I am still at work [I’m retired]. I have been put on medication to help me sleep & I feel better.
You should speak to your Mother’s medical team to get this sorted.
Thanks for your reply @Steve2, my Mum suffers from vivid nightmares and disturbed sleep too. I suspect that until now, both she and my Dad have been playing down her symptoms at appointments as I’ve never attended an appointment with them myself.
I’ve spoken to the 111 mental health team this morning and they’ve given me a couple of numbers for our local memory assessment and treatment service so I’m trying to get through to them today. Fingers crossed as I can, as the lines have been constantly engaged so far…
I have been diagnosed 3 years now and have had very strange experiences over this time. I went trough a stage were I thought someone was looking over my shoulder? I though I could hear someone calling me all the time. The best is yet to come.
I have just**[quote=“JoBloggs, post:1, topic:43149, full:true”]
Hi all.
This is my first time posting on this forum, and I’m hoping somebody might be able to offer me some advice. My mother is aged 72 and was diagnosed with PD nearly 4 years ago. Over the past few months, her delusion/hallucination symptoms have really ramped up, and my family and I are struggling to know how to handle things. She lives with my Dad, who is her age and her sole carer, and she has been accusing him all sorts of things that are untrue. Over the past few days alone, she’s told me that he is installing surveillance cameras in their home and garden so that he can monitor her, spending her inheritance so that she has no money left in her own name, and she has also phoned me up to say that he is mentally ill and needs to see a psychiatrist asap because she’s worried that he is going to take his own life. This evening she went over to a neighbour’s house in her dressing gown and slippers to seek sanctuary because “she was worried that the police were coming” and that she “needed to get away” from my Dad because “he is so controlling”.
Does anybody else have a relative with PD who behaves in a similar way and do you recommend any particular way of managing these situations? The level of paranoia is becoming unbearable and she is so suspicious of people, my Dad in particular. It’s so upsetting to see her go downhill like this. Her next consultant appointment is roughly a month away; is there any medication available to suppress these kind of feelings? Thank you for taking the time to read my post.
[/quote]
** 5 weeks had my right hip replaced all went fine with no problems at all. I had oped for the epidural in my spine as I have had them before and amazed how quick I came round eating with in the hour. We they placed one epidural in my left side but it didn’t numb me at all. So they put a second one I my right still it didn’t numb me as it should. So they just put me to sleep?
I woke up back on the ward asleep and woke up lat afternoon. All seemed well until later that night 3 am i decided i needed the toilet? Forgot I had hap my hip operation and got out of bed to go to the bathroom. When I got the and after wee I sore a shower in the corner so I thought yes I will have a shower, As I was undressing I slipped and fell on to the floor well I laid there unable to reach the red emergency cord I was stranded. In a very short time a nurse come and found me and got help to get e into bed.
Then two porters came to move me closer to the nurse station to keep an eye on me.
I must have gon to sleep it was dark in the room I was in and had this feeling I was not alone.as it started to get light I was amazed there was spiders everywhere on the walls roof so I rang my bell and the nurse came to carm me down. Through out the day strang things kept happening like ants in my bed hedgehogs on the floor a lover the place.
This continued all day and the nurse asked my wife and daughter was I like this all the time. They were vey confused and worried that night I have the most unsettling visions the the corridor I could see down was been refurbished by a teem of joiners workin through the night? Over the next day or so more strange things happen. The surgeon how carried out my operation came too see me and explained because of my PD and the medication I was taking must had reacted with the anaesthetic they gave my for my operation.
After I was home and looking back I was an unexpected sensation and feeling that was very interesting but unfortunately.
Sorry for the long answer but hat to tell you your not along meany PD suffering these symptoms with us.
Regard Dave&San
Thanks for sharing your story @Davesan; the vivid hallucinations must have seemed so scary at the time. My Mum has had visions of seeing strangers at the foot of her bed, or just a general sense that there was somebody else in the house with her when she’s been on her own.
It’s helpful to know that my Mum’s not alone in feeling this way, even though it doesn’t help in any practical sense. I appreciate you taking the time to respond, thank you.
Hallcinations are very common with PD usually more at the advanced stage and they can be PD dementia related.
My HWP was put on the Rivastigmine patch which has helped and also one of his medications, Rotigine was reduced. The issue can be that after about 10 years or so, the PD medications can start to impact negatively on cognition like hallcinations. This is why it feels important that you tell your mum’s PD nurse that she really needs a meds review with the Parkinson’s team.
The problem is that it gets more complex once they pass the long middle phase of PD - then it’s a mix of cognitive decline, the meds not working so well OR the meds beginning to cause things like what you describe.
Unfortunatly with the busy NHS, sometimes you have to ‘throw a wobbly’ to get your loved ones seen when they need. But I think if you explain how distressing her behaviour has gotton, they will prioritise her.
[quote=“JoBloggs, post:1, topic:43149”]
delusion/hallucination symptoms
[/quote] Hi Steve
Do you act out your dreams? If so then it is not a result of your medication but is a symptom of your Parkinson’s Plus Syndrome
Regards
Thanks for all your replies. Just thought I’d provide an update…
After numerous phone calls today, one of the consultants in my Mum’s team put through an urgent prescription for quetiapine that I was able to collect from the pharmacy today so she could start taking it asap. She’s on a very low dose, with a view to increasing it if necessary depending on how she reacts to it. I’ve been told that they will send a nurse round to review her in a couple of weeks.
My Dad also took a urine sample from her to the GP to check for infection, so I’ll be chasing the result for that tomorrow.
Feeling relieved that she’s hopefully on the road to getting this sorted.
Good evening JoBloggs … Pleased you are getting things sorted. I was put on Quetiapine by the head of my GP’s practice in consultation with my Parkinson’s nurse. It is quite a big deal being put on this drug. It did help my real dreams / nightmares & helped me sleep BUT I was very zonked during the day. After a while I stopped taking the drug having told my Parkinson’s Nurse & got his agreement.
I still have dreams but they are less worrisome.
A recent drug which has helped me a great deal is Clonazepam. I sleep so much better & I don’t wreck the bed [restless legs].
