Hallucinations after Stroke

[Fitzhugh]

I am carer for my husband who has had a stroke. I want to know if anyone has experience of a patient who has hallucinations, in this case wasps everywhere, in his food etc and cannot eat much or drink much.and if so any tips for dealing with this phenomenon.

[New_beginning]

Hello Fitzhugh, I also become carer for my husband since March 2020, my husband sustained TBI and had post traumatic amnesia for 4.5months solid with bizarre behaviour you couldn't script and traits still occurred until November. He had obsession with internet, cables and basically took every wire in side and outside of walls, he kept wanting to attack any delivery, postman and actually did and kept obsconding to where a pond use to be when he was a child. He is now 42, I'm 38 we have two children 3 and 15. Due to lockdown brain injury team not visited since December but this week they have been in contact to commence home visits for April. I have so much to tell them, its sounds outrageous thinking about all and yet to write down which I need to do as to give overview how our few months been alone.

I feel for you, it's so difficult and people disappear they cant handle behaviour. I've literally finish my annual leave today after few weeks off back at work tomorrow and thinking how the hell am I going to cope with all demands again. I've been toying with selling house for financial reasons, but hoping this house we chose to start family and renovate helps his rehabilitation.

Professionals dont even give answers on how long behaviour continues. However hes progressing well and has come a long way considering we had to say goodbye to him last year when on life support. I hope you have support with managing behaviour best you can, I understand how testing it is.

Tip wise, I learnt quite quickly to not push on too much wrongs, when behaviour heightened, i worded 'let's go have a rest. Has you husband had tests to check sign of any infections could be urine etc... as that can play on hallucinations too weirdly.

All the best.

[Fitzhugh in reply to New_beginning]

Thank you for that comprehensive post. Its nice to know that I am not the only one who is coping with things like that. I feel so sorry for you as a working wife and with a young family. i am retired and so am at home 24/7. I have support from my two daughters who take it in turns to be with me at the moment. He's only been home from hospital just over three weeks so it is early days but very draining. Fortunately he's is not aggressive or violent. He is very depressed about his situation but cannot be pacified about the 'creatures. Onward and upward I suppose. Thanks again.

[New_beginning in reply to Fitzhugh]

Hey your home 24/7 just has hard work mind. I appreciate my 30mins travelling to work it's my only window for break. I hope you both get support in managing. Will take a while though, I'm afraid. All the best.

[Pairofboots]

Hi. My dad had to go into a nursing home following his last stroke. I didn't get to see him much in the two years he was there because of the distance away.

I wish I could have given up work to care for him, but that was not a practical solution at the time.

Care staff would say he had some bizarre behaviours, and in managing them disabled him further.

But if you knew his life history, many of his behaviours were perfectly logical, and the verbal ramblings, were based in real life.

Even his wife didn't know the meaning of his words or behaviours.

To people who didn't know his life, they may have appeared as hallucinations.

I experienced a stroke ten years ago, and initially I thought I had got off lightly, but following discharge from hospital, I did go through a period of time that even I would say my behaviour changed, and I couldn't explain why I had to do certain things, or why I found things so distressing. With hindsight, I think it was the brain trying to rewire pathways around the damage.

It is no good confronting or dismissing hallucinations, as to the person they are very real. A referral to a neuro-psychiatrist would be the direction I would aim for. Don't worry about the big title. It doesn't mean your husband is made, but brain injuries can have similar symptoms to mental health illness, and the treatments are often the same, but I spend so much time explaining the difference between mental illness and brain injury, and have different route causes.

Contact Headway to discuss what help is available, contact details are pinned to the top of the screen.

Best wishes.

[Fitzhugh in reply to Pairofboots]

Thank you for your insight. I appreciate that it is no good confronting or dismissing hallucinations but what do you do? Every meal and drink I give him is 'contaminated' How do I convince him it is ok to eat. How can I get nutrition into him? It is causing a lot of stress in all of us.

[Pairofboots in reply to Fitzhugh]

Hi, I can sense your stress, I don't think there is a quick fix to this. Talk to his care team at the hospital he was in, he needs an urgent referral to a neuro-psychiatrist. A generic psychiatrist may go down the wrong route because of the brain injury.

Does he accept food or fluid of any kind? At this point don't get into fresh home cooked food. Even if it is total junk food. I don't know what abilities your husband has, but involve him in choosing food and fluid even if it is a packet of biscuits and bottled water. You may be able to get a prescription for Ensure from the GP, at least with this he will receive essential nutrients and fluid. The GP can start the ball rolling by prescribing anti-depressants, and an anti-anxiety medication. The GP can only initially prescribe so far.

In extreme cases of depression, hallucinations can manifest, in addition to the brain injury this is why I suggest getting an urgent referral. The sooner he receives treatment for his depression and hallucinations the better.

If he refuses all food and fluids he will end up back in hospital, but whether it is a general hospital, which will be best, but he might be admitted to a psychiatric hospital, which I feel wouldn't necessarily be the best place for him because of the stroke. The longer this goes on, the less options he will have.

You have family support, but you need urgent professional support, this isn't something you can manage within the family.

Please let me know how you get on, or if I have given you any way to move forward. You may already have tried what I have suggested.

Please also contact Headway, they are there for carer's as well as people that have the injury.

Best wishes.

[Fitzhugh in reply to Pairofboots]

Thank you for your advice. I will follow up all your suggestions as soon as I am able.(It is now Holiday weekend.)

[Pairofboots in reply to Fitzhugh]

Blooming bank holiday, I forgot about the double b/h. But the hospital should be contactable, that is a good start 🍀

[sealiphone]

Has a Psychiatrist has been involved, as hallucinations seem a very different thing than the 'bizarre ' behavior you typically see after a brainy injury.

[Fitzhugh in reply to sealiphone]

Hi, no, no psychiatrist as far as I know. He has been prescribed a anti psychotic drug twice a day.

[barnaby444]

Hi , I hope things are better for you now . I have only just joined this group so hoping it has all been resolved for you . I had a ruptured brain aneurysm coiled and experienced the most awful hallucinations which even 6 months on seem so real . Have tried to seek physcholgical help with no luck so looks like i will just have to go through it . I do hope all is well for you and your husband and am hoping when i get myself sorted that i would like to somehow get involved and help people . Take care Kelly

[bonfire]

Hi I hope things are a bit better today.The word ‘ hallucination’ caught my eye. This may not be of any help and I am not a medic but I had a brain bleed and hallucinated a lot. In my case it was seizure activity.

My drs increased my anti epilepsy drugs and gave me Valium.

I slept lot and it eventually passed.

I hallucinated insects, aliens and saw music.

Best wishes

Bonfire

[Fitzhugh in reply to bonfire]

Hi there, thanks for your post. Yes things are now more positive and the hallucinations are still here but much more controlled. We've undertaken lots of research since my last post. It appears that my husband is suffering from 'Charles Bonnet Syndrome' which is more common in people with macular degeneration. It is a consequence of the poor eyesight he now has. The eyes are healthy according to optometrist but the brain is confusing what he sees. Still waiting after nearly 6 months to see Opthamology Consultant to see if we can do anything to improve the situation. Other aspects of his illness are now more manageable with a good team of carers.

Onward and upward.