PSP Association
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CBD and delusions?

Lately dad has been telling me things he sees or hears and I know for a fact they are not true.

I have spoken with his doctor and he just says it may be part of the progression. The doc also said unless dad becomes overly agitated or aggressive there isn't much he can do.

Anyone else noted behavior like this?

Thanks

Ron

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Hi Ron, first thing I would check is does he have any infection, or raised temp! An infection may not be obvious at first, even without a temp, but seems to play havoc with the system of even a healthy elderly person.

My husband had delusions, with and without an infection. I had little time to analyze the detail. Yes, they did appear with or just before an infection - he had pneumonia. And yes, he had delusions at odd times when he seemed OK.

One instance, he told me he fell off toilet while trying to put new PJ pants on. Yes, he had a fall out of bed wanting to get to toilet, but he was dealt to by nurse. My opinion - he told me what he wanted to believe happened, being a normally independent guy. Other times, while in hospital and having to process so much information, he told me some very "tall" stories.

In all, I guess this is understandable for a person whose brain is processing information in an incomplete manner, especially some occurrence he would not expect to happen "normally", or when there is a ' system overload'.

So in my limited experience of CBD, yes, it can happen. But look out for infections!

We also had some fun! One time he came in and said he had seen a tortoise! We all questioned his sanity - until he called us to view said tortoise a week later when it got out of its pen at a neighbor's again!

You will also notice earlier memory sometimes comes more to the fore! I was asked how our '2 little boys' were. We have 3 and they are adult! And some of the old energy and jokes from our courting days re-emerged, something that had not shown up for a long time due to stress etc!

Like loss of movement, he also forgot how to read, play solitaire, count, play dominoes. He frequently said he was bored! Yet there was nothing I could find for him to occupy himself with. He did build the odd tower with dominoes, but did not seem to be keen to repeat.

Chin up! You have your dad in a good place and you can be his son, rather than his carer! Give him hugs and kisses ( if he likes them!) and tell him you love him!

Hugs

Jen xxx

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I loved your sharing, so right on. My son died of PSP (55years of age), not CBD.

I was my son's only carer until Jan, 2017, when I hired a Mon-Fri 24 hour caretaker, myself on weekends. My son wanted to remain at home, after his 2nd bout of aspiration pneumonia where he spent 7 days in the hospital he said NO MORE HOSPITAL.

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Hospital was our only solution towards the end. Doctors were pretty useless, apart from the neurologist who was researching CBD and other brain disorders. Most nursing staff and carers were great, but it was not home! And not secluded!

Am reflecting more on the experiences we enjoyed together of late, rather than the anguish of the ravages of the disease, medics lack of knowledge and how my man had changed.

Was a bonus to be reminded by my love's sick brain of the young man I fell in love with 50 years before, as he spoke in a carefree manner like he was back there!

It does get less raw with time!

Hugs

Jen xxx

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Yes. It is not uncommon. Try not to worry too much. For most the delusions seem to come and go.

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He doesn't have any infections, that was first thing the doctor checked for. I am not overly worried, it's just odd that it started to happen all of a sudden.

Dad has become almost bed ridden since he has fallen out of his wheelchair twice now while trying to get something out of his reach. The staff at nursing home can't watch him every second of the day, I get that, and he doesn't like to use the call button for assistance.

Just one day at a time....

Ron

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Yes. Found status quo changed in a flash, frequently, as the brain was increasingly compromised. Bit spaced out, then big sleep, then more activity. Sometimes a little improvement for a while.

Enjoy each moment, especially that unexpectedly 'back to normal' one!

As you say, one day at a time!

Hugs

Jen xxx

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Our lovely palliative care nurse administrator told me that no nursing home could prevent falls better than at I could home, which is to say, not well enough. The loss of impulse control just makes the patient prone to sudden motion. I wish I had been aware of this sooner. It's hard, but, as you say, one day at a time. Peace, ec

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Sorry for quick reply, it is not meant to sound in anyway abrupt but just short of time.

Hope you don't mind but whatever is being seen would be better referred to as a hallucination / visual disturbance rather than a delusion, a completely different thing.

Hallucinations / visual disturbances can arise from many causes MH problems/ delirium from infection etc. It is good to get physical health checked out to eliminate infection ( UTI).

Keep a note of what they see and how long they last , also whether your relative is disturbed by what they see.

Have a look at the following too...

nhs.uk/conditions/charles-b...

Think the above condition is overlooked somewhat but v possible with neuro degenerative that affects vision. Convinced my mum ( had advanced PSP) also has had this, although we are now beyond this as she can hardly open her eyes at all. She saw dots/ lines, animals and symbols , very strange symbols. This started as her saying she saw something which thought was just her eyesight / vision being so bad but ultimately realised that it was more than her thinking the tree trunk in garden was a cat! There is a "funnier"story but I won't go there at mo.These were not hallucinations from her declining MH or stemming from infection but I believe Charles Bonnet. She was quite entertained by them in an impaired cognition - passive sort of way.

Seek help if you think they are distressing for your relative and take details with you to next neuro appt. Of course your relative's experience maybe different and not this at all.

PS I also work in MH.

Good luck xxxxx

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My hubby had hallucinations about 3 or 4 years in after diagnosis. Turned out to be due to his meds which had to be adjusted. Once the level of meds had stabilised the hallucinations went away.

During his last month or so, he started hallucinating again. Turned out he was seeing his Dad who had passed way the year before. I'm not in any way suggesting your Dad is at that stage but it was comforting to know his Dad was with him (or he thought he was) to take him home.

Hallucinations are not uncommon with PSP patients. Although it is important to understand the underlying cause in case it's something that needs seeing to, like incorrect meds or an infection.

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OH YES! My sister has all sorts of "friends" come to visit! Some are nice -some are not. We can usually get her to 'say good-bye' to her friends if we introduce her to music that she like to listen to. But we must be careful not to play a sad song... or she will start crying. Only happy music will work - Neil Diamond always gets her in a good mood. The really hard part is when she has visitors in the middle of the night and can not go to sleep. We have started giving her a sleeping pill- ONLY when we can not calm her after a few hours... we all need sleep including my sister. We have almost accepted her "friends" if they are having a nice chat... but when makes her agitated - then it become concerning. Our Neuro appointment is coming up and we will be addressing this because her agitation is becoming more frequent especially at night. Just when we think we have this caregiving routine figured out- CBD symptoms change and we have to come up with new strategies! Hang in there everyone!

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