Hallucinations, Delusions and Violence

Living with Parkinson's Carers, friends and family
1

Hi there.

This is a very long post but I would be most grateful for any advice.

I’m Sam and I’m 38. My dad was a very young 70 year old and has had PD for approximately 14 years and up until now, he’s managed it really quite well considering. We live together, he, my brother and I and my 10 month old son. I have been his carer for years but I left work 4 1/2 years ago to care for him full time.

In January, Dad slipped and broke his hip. He had an emergency hip replacement the following morning and hasn’t quite been the same since.

Hallucinations started as soon as he woke up after surgery and we just thought it was the anaesthetic and trauma etc, but as the days went on, the hallucinations and delusions just got worse and worse and he became very aggressive towards everyone, the hospital staff couldn’t wait to get rid of him. It was so unlike my Dad because he’s usually such a gentleman.

24hrs after being home, he snapped out of it, but in less than a week, it all started again, not knowing we were in our house, where we’ve lived for 35 years, he kept trying to get out. He was seeing people all over the house, men, women, children, constantly thinking I’m lying to him, seeing my dead mother and talking to me as he was thinking I was my mother, wrecking his bedroom to get the spiders out, up all night shouting the house down, all this with a little baby was really hard, and then just like that, he’d wake up 1 morning and he’d be ok again! This has repeated over and over from January right up until 2 weeks ago, he’d been hallucinating for 8 days and nights and he became absolutely petrified in his own house and no amount of help and reassurance from me did anything for him, so that’s when I asked him did he want to go to hospital and he agreed.

When he broke his hip, he also banged his head but the hospital I took him to then did not scan his head because he didn’t lose consciousness. The hospital I took him to this time said they should have scanned him, so for that reason only, they kept him in to do a scan.

He was only meant to have 1 nights stay so he could have the scan and then come home but while in hospital, my dad’s mental state deteriorated rapidly, the delusions and hallucinations were worse than ever! The doctors did not want to let him go home and he got kept in and he has become really really violent! They put a DOLS on him and he became even worse. He is attacking the staff on a daily and nightly basis and he’s really hurt some of them too. He was trying to stab them all the other evening and when security came (again) he threw the knife at another patient facing him on the ward. He is absolutely out of control!!! He even hit me too on Wednesday 5 times and went to again today. My dad would never harm a hair on my head and he’d kill anyone who tried to. The way he’s treating the hospital staff is just outright disgusting and he’s going to be so ashamed of himself when he’s better, if he gets better??? The only way to calm him down is by sedation and sometimes he’s so sedated, he looks like he’s dying. He’s now refusing to eat and drink, he’s lost so much weight over the past 2 weeks, it’s awful.

I discussed with doctors that even though the staff on the ward are amazing, it was just a general medical ward, and the staff aren’t trained to care for a person presenting these type of mental health issues and that he needed to be moved asap. The doctor agreed 100%.

Well today, he has been sectioned under section 2. We are just now waiting for a bed in a local mental health hospital, so for the moment he is still on the GMW under 24 hour surveillance by 2 or 3 nursing staff. He is a massive danger to everyone and to himself too. It’s just so sad, where has my amazing lovely dad gone?

Just 3 weeks ago we were on holiday and he was absolutely fine.

I’m just wondering whether anyone could help me please? Does anyone have any knowledge or understand any of this of what I’ve just explained?

Does anyone have advice on hallucinations and delusions and can people get better from it or has my dad gone forever now? Have I lost him? I’m at a total loss. I’m petrified and so upset, I just don’t know what else to do?

Thank you very much for reading.

Sam x

2

Hi Sam,
First of all, so sorry you have to go through this. It is very upsetting for you and your family.
I’m no expert but something similar happened to my dad 8 years ago. He was paranoid, scared and suicidal, having been a strong, capable man all his life. He voluntarily went to a secure unit. It turns out that it was an untreated urinary infection which went to the brain. He was put on anti psychotic drugs and slowly came out of it. He is still on the drugs and tends to get infections every so often. Its something we keep an eye on. He is not exactly the same man but he is happy and engaged in his family and life. Im not sure this helps but I do believe urinary infections are dangerous and sometimes overlooked.

3

Hi Sam
So sorry to hear of the difficulties with your Dad. I have no such experience and can only imagine how distressing it must be. I hope somethng gets sorted out for you soon.
Best wishes

Knine
Audrey

4

Hi Sam,

I sympathise with what you are going through.

Both my parents have had hallucinations, my late father as a result of Lewy bodies, while my mother now has Alzheimer’s. In both cases a UTI often was the cause of their more florid symptoms. It sounds as if the hospital have done the right thing getting your dad specialist care.

The good news is that delusions can be temporary. The bad news is that it is likely to happen again.

5

Hi @Sambo479,

A warm welcome to the forum.

Firstly,I am truly sorry to hear that you’ve been going through such a difficult time with your Dad, I can only imagine how distressing this has been for you and your family.

I can see that one of our moderators has already reached out to you via Facebook private message, however, just to echo what he said, we are here to offer you as much help as we can and our helpline is available to you if you’d like to speak to one of our advisers.

There are also Information and support centres, such as Citizens Advice community centres and carers centres, which are useful if you want to ask questions and talk to specialist staff and trained volunteers about your experience.

I’m sure you’ll continue to receive support from other members on the forum, however, I hope you find the information above helpful in the meantime.

Best wishes to you and your family,
Reah

1 Like
6

Mum, stage 3 Parkinson’s, gets hallucinations BIG time, always at night! They are sooo real for her that she can see the ‘‘picture’’ in her bedroom. She doesn’t get violent, but she does scream and cry out. She also has many nightmares. I’m usually very afraid and go in to check up on her in case she falls out of bed, or injures herself in someway. Once when she was flinging her arms and legs around I gently stroked her arm to try and get her to wake up slowly - but before she did she did scratch me and I was surprised by the strength behind that scratch! For sure, this is a horrid disease, everyone’s different, yet inside these peoples’ bodies/heads there is so much going on and so much for them to accept.

7

Sorry to hear your story, your poor father must be enduring an awful time. Out of curiosity was yourDad getting his PD meds? And was he getting them on time. I know that hallucinations can be symptomatic, but are quite often brought on by the drugs.

8

Huge commiserations and I hope your dad can be treated to help him and you.

I found it very interesting to read because my husband diagnosed with PD in 2012 was taken to hospital 10 days ago with an infection which antibiotics are taking a while to combat. During these period in hospital his hallucinations have become extensive and he is often confused and unsure where he is. We had thought that him being given morphine on top of his Parkinson’s medication might be causing the sudden increase andcare hopeful that once home he can regain some peace and normality.

Interesting before going into hospital he had a fall in the garden but said he didn’t knock his head. I will also question a urine infection with the hospital staff, Thankyou

9

Hi Sam
I know exactly what you are going through my husband has a lot of the same symptoms you describe, now their might be a couple of reasons this has happened to your father because he was OK prior to his operation it sounds like delirium, there’s a lot of information to be had but their doesn’t seem to be medication to help that delirium gradually gets better over time so you have to treat the symptoms as they present.
My husband suffers from hallucinations and delusions causing difficult and unpredictable behaviour as he responds to his hallucinations. Unfortunately he is now in a nursing home the problem is staff don’t spend enough time with him to understand his hallucinations but only see the unreasonable behaviour . He has a psychiatrist involved and she is trying antipsychotic medication but all takes time.
So yes people don’t see what a terrible disease PD is
Hope you get something to help soon because your father my husband would be devastated if they knew how they are affected
Agnes

10

Hi Sam,
I’m so sorry you’re going through this. Last year my Dad has to spend a few weeks in hospital, first for specialist physio and then for some monitoring while the neurologist tried to make some changes to his meds. He also had hallucinations and delusions while in hospital. He thought all the nurses were against him, didn’t trust the doctors, was agitated and uncooperative. Every morning my mum received a call from the hospital asking her to come in, as they didn’t know what to do. They mostly gave him sleeping pills which seemed to make it worse. In the end he was discharged into my mum’s care at home (not sure that was the best option) and the delusions got worse. He didn’t recognise my mum and thought others were in the house trying to harm them. He was very agitated, although not violent. My mum was beside herself. My parents live in France so I was not physically there to help. I spoke to my dad on the phone frequently and he wanted me to call the police and the FBI (he is American) and all sorts of things. It was very, very difficult. In the end the neurologist suggested trying an anti-psychotic drug called Clozapine, which apparently helps with delusions. We were very wary at first, as we were told it had a lot of serious side effects. However, in desperation and under the advice of the neurologist in the end we agreed. The first night was terrible - it knocked him out for 16hrs and then he had the worst delusion yet. However the neurologist’s advice was to slightly reduce the dose but to persevere - we did, and it helped! Dad has not experienced any serious delusions since taking it. He still has hallucinations quite often but they don’t cause him the same distress/agitation. For the first 6 months he had to have a blood test every week to monitor but now it’s only once a month. I understand that this drug is not widely prescribed and may be not be suitable for everyone. Also, I don’t know if there are different drug licensing rules in France? But it might be worth asking about. It’s so difficult, as everyone’s experience is slightly different. I do hope you get help to find the right solution for your Dad.
Best,
Hope

11

I have a digital bedside clock, and during the night I have hallucinations, I can see outlines of buildings, and on a few occasions an actual film is being shown. Does not worry me, more intrigued.

12

Hi Sam ,
Reading this some months after you posted I find myself wondering what happened…I don’t know how you coped with all that…sounds utterly awful in every respect and the fact that you survived in any shape or form should be seen as a triumph.
At a distance, I also wonder why it is that when the hallucinations and delusions happen , they are mostly if not entirely scary and involve v negative and anxiety provoking feelings. My husband had post op delirium which went on for a lot longer than it was meant to , though reading other posts I see how “ normal” that is. Made all the harder when you know what the person is really like and nursing staff only see the rather unpleasant individual they have become or are at that time. I often found myself pleading…he’s not really like this, honestly,
I was never sure whether to challenge the more outlandish delusions in an attempt to reassure, or go along with them, in an attempt to avoid further agitation. If the former, my husband would get angry at me for not helping him to address the , to him very real, scandal of people being murdered and buried in the bowels of the hospital and such like. Some things would have been funny had they not been for real for him and thus desperately sad…and the feelings they engendered in my husband as real as any feelings could be.
As so many people say, it is the loss of the person that you knew your loved one to be, whilst they are still there in body and at times part of their minds, which is so hard. It is of course a grief, but no ritual for expressing it and dealing with it whilst the person is still alive and whilst there is always hope that they will “get better”. , however futile that hope can feel.
Knowing that other people do know what it is like does help…many people do not, but think they do and spout cliched words of supposed comfort which I suspect make them feel better than they do me. I can’t blame them…I have no doubt done the same myself, but am now older and hopefully a bit wiser. That’s life eh

13

I have this exact same problem with my Mum. It is a common occurrence at night to hear her screaming about someone climbing in through the window, or witnessing the entire fire department in her bedroom. So real for her too and scary. Mum is quite frail now so she’ll talk about it but if I brush it off as just another nightmare she will move on and go back to sleep eventually. She does get emotionally charged because invariably the person she had this nightmare about was a member of the family. Mostly I just try to soothe her and reassure her and never allow her to believe that I don’t believe her. She is aware that the PD is making her do these things and thankfully she trusts me to tell her the truth … and I’m also always there and often have to reassure her of this as she is so emotionally unsettled after these nightmares that she becomes totally insecure.
This is a very horrid thing that has happened to Mum and many others with PD. Bring on the day when they finally find out why this happens to nice people.

14

Hello Sam
I have only just read about your sad and hard times with your Dad and wonder how things are now ?
My husband was diagnosed with Sepsis twice last year culminating in more than 9 operations (we’ve lost count) all involving his knee where the infection could not be removed from. Like your father his PD diagnosed in 2012 was okayish and well medicated to that point.
We very quickly realised that the morphine based and codeine based drugs routinely given following Orthopaedic operations did not interact with the PD drugs giving him bad hallucinations and delusions at one point trying to fight a nursing sister because he was going home !
We discussed this being the problem and in his subsequent operations he refused all morphine and codeine based drugs which made things hugely better. Sadly he has lost his mobility as the recurring hospitalisation and infection has taken a big toll on his PD.
Very Best Wishes
Jane