My poor mum has been suffering from PSP for a while now and I’m so sad to believe she is in the latter stages of this cruel disease. She has sadly lost her eye sight and if that wasn’t enough is now suffering from halucinations some lovely visions and some not. Can anyone out there suggest anything that may help or share their experiences of halucinations. Mum is not on any medication either sending my best wishes to you all I have only just joined but already so grateful for this site x
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mav46
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Normally hallucinations are caused by a medicine, but you said your mom isn't on any, or more commonly an UTI is present. I would have her doctor check for any infection to rule that out.
Thank you for your advice have a nurse here tomorrow to check. Mums actually feeling hot and cold tonight so think you could be right. Sending best wishes to you
I'd suggest speaking to the neurologist. Hallucinations are not part of PSP. Hallucinations are common in Lewy body dementia. For those with LBD, neurologists often prescribe Seroquel (quetiapine).
Whilst hallucinations are not common in PSP they can happen even in the absence of medication or infection. In my husband's case he experienced hallucinations from the start of the illness pretty much on a daily basis. These were not caused by medication as he was not on any nor did he have infection, but in your mum's case it will be good to get either ruled out. We had a resident boa constrictor on the patio, gorillas, spiders, elephants, a little girl who played at the bottom of the garden and whilst visiting friends on one occasion Rod saw soldiers in their backdrop of trees, in the branches, not on the ground. He could describe all he saw in absolute detail.
I did learn very quickly to go along with what he was seeing because in his mind it was real - on one occasion I even guided an elephant out of the room. Now, none of these hallucinations ever frightened him and our neurologist felt that as he was coping then medication was best avoided, which I agreed with. I always felt that Rod had a mixture of illnesses, including Lewybody but because he did not have brain autopsy after death we will never know. To be honest even had we have known before he died, the outcome would have been the same, no treatment, no cure.
If your mum's hallucinations are stressful for her then I would suggest having a chat with her neurologist but in the meantime try to go with the flow and ask her whether she would like you to remove whatever is bothering her and see if that will help. It's a never ending battle, you learn to manage one thing but there's always another challenge waiting in the wings.
I wish you the very best as you continue this journey with your mum - there are no magic wands to get us through this but get through it we do - one day at a time. HilsandR
Indeed, in our local Lewy body dementia support group, caregivers report seeing something like the San Francisco Zoo in their homes or on their lawns. Typically those hallucinations were not frightening.
Has she lost her eyesight completely or is she seeing things & struggling to understand what she sees? My Mum sees things, sometimes she is misinterpretating what is there and if I point it out to her she can see what is really there, other times it's a proper hallucination and as others have said best just to go along with it and not make much of it, but give reassurance.
It could be the ocular part of the brain trying to find eyesight signals when they are missing so to speak. e.g. part of the blindness rather than hallucinations per se.
My husband John just had a whopper the other night. John even got in his wheelchair without help and was madly trying to sneak out of the house. He believed if he got out of the house, he would nolonger have PSP!!! After I assured him we'd figure out a better plan in the morning, he finally went back to bed. He did remember in the morning and was able to discern it was not a good plan. Our Dr. said it was a delusion rather than a hallucination. The executive function is so depleted that he really can no longer use any critical thinking skills to process his thoughts. John takes no medicine.
Hi there this is the first time I have talked to anybody on this site, I'm so sorry to here about your poor mum, my mum has recently been diagnosed with psp disease, she was ok in december, mum only went into hospital for a knee replacement, she has been fit and we'll all her life nothing wrong with her, then after the operation she had a few falls, then a chest infection followed by several urine infections then she struggled to get up and walk about using a zimmer.The doctors were baffled nothing was improving, so I started to google everything, it all pointed to motor neurons disease, so I asked the doctors, they said no it wasn't she can still do her knitting. So I booked a appointment with the Yorkshire clinic and she was told she had psp disease there and then in june, she is at the end stages of the disease, mum was walking in feb/ march, now all she can do is move her wrists and head, then last night she said she could not see anymore, mum had a sleep woke up and could see again, now I'm beginning to worry, the only pleasure she has is watching the tv, that could end for her soon, I have not heard of any body getting this disease so progressively, it's just so sad last year mum was walking her dog around the river twice a day chatting to everybody now only a few months later she has no speech and is totally bedbound, it's a dreadful disease, all mum wants is to fall asleep and go to heaven 😥
So sorry Jimjam. My husband died from PSP and I know how devastating the diagnosis is. I hope you find support from this site. It was a lifeline for me .
Has there been any change in the hallucinations? Was it a UTI? UTIs really do cause very serious effects in the elderly such as this and should not be underestimated. My father has PSP and has been suffering from getting up to pee at night (now helped by wearing nappies) and a recent UTI and his normally sharp mind was a bit confused plus he had some strange dreams. Do get the UTI checked out and even rechecked out as sometimes they come back frequently enough that a new one comes up by the time you've got the results for an old one! And really focus on the fluid intake too.
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