Delusions

[Kellsbelles]

Hello, my dad has PSP and int he last couple of weeks he’s been suffering from what I can only describe as delusions- they seem to have no basis in reality but he is adamant that it’s real and he is quite distressed about them. It’s mostly been happening in the last week I would say. I’ve not heard of delusions with PSP but I could be wrong? Can anyone else shed any light on this for me as I’m worried he may also have another undiagnosed health issue. Thank you. 💜

[Hidden]

Delusions and hallucinations can be part of PSP.

It could be a urinary tract infection or a medication he may be on (look up side effects for any medication he is on) or his brain doing things due to PSP. Ask his doctor.

[Kellsbelles in reply to Hidden]

It must be PSP then I’m guessing. He was looked over by paramedics yesterday after a fall and they said he seemed okay. The doctors aren’t taking appointments at the moment due to Covid, so I’ll have to keep an eye on him until we can. Thank you Jeff. 💜

[SewBears in reply to Kellsbelles]

I’ve been able to schedule video conference calls with my husband’s neuro doctor during lockdown. They can adjust his meds based on what is troubling him and also keep an eye on his well being. It’s been a lifesaver for me.

I agree with Jeff. Call his doctor and ask how to submit a urine sample to check for a UTI. Maybe there’s a lab where you could drop it off or have a nurse come to your house to check up on him?

Delusions and hallucinations can be part of PSP. There have been some interesting posts about this topic in the past. Type hallucinations in the search bar and see what pops up.

❤️SewBears

[Kellsbelles in reply to SewBears]

Thank you. I will give his doctors a call and see what can be done. His neuro isn’t very good. He was diagnosed and that was it- said that he would be too busy to provide him with a 6 month check and we’ve not heard anything since despite me chasing him up. ☹️ I’ll have a search for delusions on here, thank you.

[Hidden in reply to Kellsbelles]

I agree totally with the above posts... Mom did not have delusions but l know it has to be upsetting for everyone involved...especially you & your dad. Wondering if his meds have been changed recently?

My neurologist also diagnosed & that was it... l will not be asking his advise or recommendations in the future. I hope we can both find new neurologists in the future. Sending hugs of encouragement... Granni B

[Kellsbelles in reply to Hidden]

He’s not had a medication change no- he’s only on levodopa and pain meds (nothing strong). I’m guessing the progress of the disease is probably to blame but I’ll have to try and look into it. Yes, a better neurologist would be nice! Fingers crossed you can get some better help too! Thank you for your advice x

[Hidden in reply to Kellsbelles]

Neurologist are useless as I soon found out. Going to your primary care giver with what you think is happening would be best.

I stopped the 6 month visit to the neurologist as they had nothing to offer.

[GirlinAZ]

My dad had hallucinations/delusions. He was on carbidopa levodopa and Wellbutrin. Together it was too much dopamine for him. The things he saw were very distressing - both real and unreal. ❤️

[Kellsbelles in reply to GirlinAZ]

Ahhh my dad is on levodopa. It doesn’t seem to be having any effect whatsoever to be honest. Yes, my dad is very distressed too. It’s horrible to see. Did you take your dad off the meds because of it?

[Hidden in reply to Kellsbelles]

Levodopa has a short period of value. It may be time to ween him off it.

[HilsandR]

Hi Kellsbelles

My late husband suffered both hallucinations and delusions with PSP. The hallucinations ranged from a boa constrictor on our patio, large spiders, gorillas, an elephant who I had to lead out of the room on one occasion and a little girl who played at the bottom our our garden, who he could describe in detail including what she was wearing. The hallucinations appeared quite early after diagnosis and never seemed to frighten him so our neurologist felt best he avoid medication as he was not distressed by them. I did quickly learn though not to question what he was seeing as that would agitate him.

His delusions came during the last 18 months and did cause him some distress. For the most part I was able to calmly talk him out of whatever the current delusion was. He would often scream at me that our daughter and baby granddaughter were in grave danger and I needed to do something or face the consequences. He’d bang on the windows trying to get the attention of a passerby. Each time this happened I had to phone my daughter and let him speak to her. That would pacify him until the next event when It might be me who he thought was in great danger and he’d try to get me out of the house. I ended up hiding door keys. It was a complete nightmare for him and for me and looking back that was the one part of caring that nearly brought me to my knees. Neither his hallucinations or delusions were the result of medication or infection, but if this is a new symptom for your dad then getting other things ruled out by his medical advisor is really important. I always maintained that my husband had Lewbody dementia along with PSP but will never know as we didn’t opt for brain autopsy on death.

Once infection/medication is ruled out as the culprit for your dad’s delusions, if you feel that he is getting too distressed then your neurologist should be able to prescribe something to calm him.

Wishing you and your family the best as you care for your dad - so many horrible symptoms with these illnesses - though of course it’s important to note that not everyone will get them all, or indeed in any particular order.

Hils

x

[Kellsbelles in reply to HilsandR]

Thank you! This has made so much sense to me. I completely forgot that my dad was having hallucinations a year or so ago- he went through a phase of saying there was a snake under his bed / in the kitchen etc. Currently he is saying the neighbours and knocking on his door and threatening him - something about drugs and the police knocking on their door at night (they are an extremely conservative old couple!) also that my aunties children have been breaking into his back garden to play (they are in their 30s now and he’s not seen them for over 20 years!) he gets quite upset if you suggest it was a dream etc. I did consider maybe he had some form of dementia too. Maybe it’s something I will enquire into with his doctor / neurologist if I can get hold of them. Thanks again for your advice x

[HilsandR]

Kellsbelles,

I’m glad my response to your post put some of your dads symptoms into perspective. However, I’ve just read your old posts and am really concerned that you seem to be trying to get to grips with doing the best for your dad on your own, albeit you have a young child to care for and work. I see that you also suffer from anxiety. You must be feeling very alone and quite overwhelmed and my heart goes out to you. Can I suggest you call your dad’s surgery on Monday and request a telephone appointment and don’t be fobbed off. They need to put the wheels in motion in getting your dad the relevant help, he has to accept it whether he wants it or not, you really cannot do this alone. Lay it on the line to the GP, make a note of what you want to say before the call so that you don’t leave anything out; remember that most GP’s have little or no experience of PSP so we do find ourselves educating them. Make sure that before you end the call you know which services he will refer your dad to.

Please push for help, Kellsbelles; PSP as you know is progressive and downturns can be sudden, your dad and you need a point of contact for advice as and when you need it. Don’t make yourself ill trying to take this all on your shoulders. I was lucky, my husband was under the care of a neurologist and a Parkinson’s nurse (she covered PSP patients) and I could call her at any time for advice. I realize that not all health authorities in the UK are able to offer this service.

Please come back and let us know how you are doing - I feel so very much for you - it can be a very lonely journey but there will always be someone here to listen to you and share tips and advice or just for a bit of banter to lift your spirits.

Love Hils

x

[Kellsbelles in reply to HilsandR]

Sorry I missed this comment HilsandR. Thank you for your kind words and help. I’m hoping I get get a bit more settled soon but there has been a bit of a spanner in the works in regards to my dads health. Another question is incoming very soon. xx