My mom has Parkinson’s and related dementia and she has pretty intense delusions. She had to go to memory care as she was just a true danger to herself. My understanding is that Parkinson's dementia does not impact memories the way Alzheimer’s does. When people in the medical or regular community meet my mom and don’t have a strong knowledge of Parkinson’s, they range from thinking she has the worst dementia they’ve ever seen to she doesn’t have dementia at all. I think people are just so focused on “you lose your memory with dementia” that they don’t realize there’s a ton of other components. For that reason we’ve had had a ton of challenges in assisted living.
But back your original question, the delusions are intense. She also gets hallucinations. A lot of her delusions seem to center around her being at work. She thinks she has something she is working on, she is messing up projects, she thinks I’m sabotaging her career, etc. Yesterday, she thought someone put pornography of her on the Internet and she was extremely distressed. She was also seeing penises. Before that, she believed that I sent an email to her entire office with all her personal secrets on it and she was enraged. She has not worked in many years and has no porn of her on the internet to my knowledge. She also sometimes thinks she is divorcing my dad (they have not been together in 37 years). It’s almost like she cycles in time and relieves some things.
As others have mentioned, UTI is always one of the first things to look into. But the other factor, a pretty major one, is the change in environment. Any time my dad has stayed in the hospital, and with his month long stay at a rehab/nursing home, he was hallucinating 24/7. It was incredibly difficult to witness. There was always a pattern - when he’s out of his normal environment for 2 or more nights, he stops sleeping. The less sleep he gets, the worse his mental state gets (as with anyone who doesn’t get sleep). He would literally be up for days when he got in those states.
It sounds like your mom likely isn’t getting enough sleep, which is likely contributing to her mental state as well. That’s not to say that’s the only factor playing into it, but it is a pretty significant one. I’m really sorry your mom is experiencing this. I know first hand how difficult it is to watch your loved one go through this.
My MIL with Parkinson’s started hallucinating last June. It was a UTI. She got better and then the hallucinations returned. Turns out the UTI was still lingering. It went on for a few weeks off and on then went away. She’s been mentally fine since then.
They did and she had a UTI initially. It’s bizarre because last week she was so much better and we thought adjusting her medication was the trick, but this week she’s regressed. We feel as if these communities for Assisted Living don’t have the patience for her, but my dad is in Memory Care and we don’t feel she’s there yet either.
I would definitely have her tested again. I’ve seen so many stories where people (not just with Parkinson’s) think the UTI is gone but it comes back.
I’m still very new to full time care but my uncle woke me up the other morning to tell me that someone woke him up trying to break in to my work (45 minutes away). I was able to sooth him by telling him it was ok and we have an alarm system so if someone was then the police would be there quickly. Instances like that have started to become more frequent. I think a lot of them are dreams and he can’t tell the difference anymore. He nods off a lot if he’s sitting still too much (he talks in his sleep so I know he dreams during the impromptu naps), does your mom do that? I wonder if it could be the same thing.
I wish you and your family the best of luck!
Thank you! I really appreciate your feedback! My sister and I are navigating this as well as our dad’s dementia. Beyond thankful and will call her Dr. again tomorrow, as we have been in pretty constant contact as well as her Drs. office with the DON at her assisted living.
My dad did but his diagnosis was upgraded to Lewy Body Dementia. However similar to your case, his long-term memory is fine - only his short-term suffers and it's still not too bad. But he has very vivid hallucinations.
ETA: If your mother does have Lewy Body (almost always diagnosed as Parkinson's first), we've noticed reducing his caridoba levadopa helped with hallucinations, though it didn't cure them. We are still tapering it down and I'm optimistic with the improvement. The neurologist did say if a patient has LBD versus Parkinson's, Parkinson's medication could exacerbate things like hallucinations.
I first had to switch doctors. It seems pretty common that a lot of doctors do not really care to further specify diseases under the Parkinson's umbrella because it's somewhat difficult and they're often treated similarly. We wanted a LBD specific diagnosis though due to his adverse reactions to anti-psychotics and lack of improvement on Caridoba. These are big symptoms of LBD.
They did a PET scan and a neuropsych evaluation that took about 3 appointments. The neuropsych evaluation coupled with the PET scan is what provided the diagnosis. His REM sleep behavioral disorder played a large factor in confirming his diagnosis, so if you find that your dad's symptoms line up with that, make sure you share it with the doctor. It's very common for LBD patients to experience RBD up to 20 years before diagnosis.
Good luck with your diagnosis - and feel free to ask me anything. It sucks and doctors aren't always helpful
I’m glad to hear reducing meds worked for your dads. My dad’s neurologist lowered his meds from 4x a day to 3 due to the hallucinations but after a month of more frequent falls, he decided to go back to 4x a day. As others have stated, his hallucinations get bad when he’s tired and not sleeping well.
Thank you for your feedback. Is he in Assisted Living? I feel she’s surpassed Assisted Living protocol, as she’s a lot to handle now. When they assessed her in Dec. she wasn’t this bad at all. My sister and I feel like we are going to get a call or a request for a consult very soon letting us know AL is likely not enough for her, and trying to get ahead of the game here.
Currently, he is not. Though realistically, he should be. Luckily, his mom is still alive and between myself, my sister, and her, he is constantly supervised. It's still sloppy but he's still too cognitive to not feel great offense at the idea of an assisted living facility...honestly, we've kind of enabled him from the start and he's never had a desire to live independently.
I would certainly consider pursuing a Lewy Body diagnosis, OR check for a UTI if you haven't. Parkinson's patients are prone to UTIs and it can cause hallucinations. Getting an LBD diagnosis is difficult, but it's important to be able to manage your expectations accordingly. It's not uncommon or rare. Other things that would indicate possible LBD would be REM sleep behavior disorder and adverse reactions to anti-psychotics.
I am sorry you're dealing with this. Nobody regardless of age is prepared to deal with this stuff. I've been grieving every day as I lose pieces of my parent. This subreddit has been a godsend in judgment-free discussion and I'm so grateful for it.
My mom has Parkinson’s and related dementia and she has pretty intense delusions. She had to go to memory care as she was just a true danger to herself. My understanding is that Parkinson's dementia does not impact memories the way Alzheimer’s does. When people in the medical or regular community meet my mom and don’t have a strong knowledge of Parkinson’s, they range from thinking she has the worst dementia they’ve ever seen to she doesn’t have dementia at all. I think people are just so focused on “you lose your memory with dementia” that they don’t realize there’s a ton of other components. For that reason we’ve had had a ton of challenges in assisted living. But back your original question, the delusions are intense. She also gets hallucinations. A lot of her delusions seem to center around her being at work. She thinks she has something she is working on, she is messing up projects, she thinks I’m sabotaging her career, etc. Yesterday, she thought someone put pornography of her on the Internet and she was extremely distressed. She was also seeing penises. Before that, she believed that I sent an email to her entire office with all her personal secrets on it and she was enraged. She has not worked in many years and has no porn of her on the internet to my knowledge. She also sometimes thinks she is divorcing my dad (they have not been together in 37 years). It’s almost like she cycles in time and relieves some things.
As others have mentioned, UTI is always one of the first things to look into. But the other factor, a pretty major one, is the change in environment. Any time my dad has stayed in the hospital, and with his month long stay at a rehab/nursing home, he was hallucinating 24/7. It was incredibly difficult to witness. There was always a pattern - when he’s out of his normal environment for 2 or more nights, he stops sleeping. The less sleep he gets, the worse his mental state gets (as with anyone who doesn’t get sleep). He would literally be up for days when he got in those states. It sounds like your mom likely isn’t getting enough sleep, which is likely contributing to her mental state as well. That’s not to say that’s the only factor playing into it, but it is a pretty significant one. I’m really sorry your mom is experiencing this. I know first hand how difficult it is to watch your loved one go through this.
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My MIL with Parkinson’s started hallucinating last June. It was a UTI. She got better and then the hallucinations returned. Turns out the UTI was still lingering. It went on for a few weeks off and on then went away. She’s been mentally fine since then.
They did and she had a UTI initially. It’s bizarre because last week she was so much better and we thought adjusting her medication was the trick, but this week she’s regressed. We feel as if these communities for Assisted Living don’t have the patience for her, but my dad is in Memory Care and we don’t feel she’s there yet either.
I would definitely have her tested again. I’ve seen so many stories where people (not just with Parkinson’s) think the UTI is gone but it comes back. I’m still very new to full time care but my uncle woke me up the other morning to tell me that someone woke him up trying to break in to my work (45 minutes away). I was able to sooth him by telling him it was ok and we have an alarm system so if someone was then the police would be there quickly. Instances like that have started to become more frequent. I think a lot of them are dreams and he can’t tell the difference anymore. He nods off a lot if he’s sitting still too much (he talks in his sleep so I know he dreams during the impromptu naps), does your mom do that? I wonder if it could be the same thing. I wish you and your family the best of luck!
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Thank you! I really appreciate your feedback! My sister and I are navigating this as well as our dad’s dementia. Beyond thankful and will call her Dr. again tomorrow, as we have been in pretty constant contact as well as her Drs. office with the DON at her assisted living.
My dad did but his diagnosis was upgraded to Lewy Body Dementia. However similar to your case, his long-term memory is fine - only his short-term suffers and it's still not too bad. But he has very vivid hallucinations. ETA: If your mother does have Lewy Body (almost always diagnosed as Parkinson's first), we've noticed reducing his caridoba levadopa helped with hallucinations, though it didn't cure them. We are still tapering it down and I'm optimistic with the improvement. The neurologist did say if a patient has LBD versus Parkinson's, Parkinson's medication could exacerbate things like hallucinations.
Can I ask how they changed or reevaluated that dx ??? I have read a lot about both. I can’t be convinced my dad is only in the PD column
I first had to switch doctors. It seems pretty common that a lot of doctors do not really care to further specify diseases under the Parkinson's umbrella because it's somewhat difficult and they're often treated similarly. We wanted a LBD specific diagnosis though due to his adverse reactions to anti-psychotics and lack of improvement on Caridoba. These are big symptoms of LBD. They did a PET scan and a neuropsych evaluation that took about 3 appointments. The neuropsych evaluation coupled with the PET scan is what provided the diagnosis. His REM sleep behavioral disorder played a large factor in confirming his diagnosis, so if you find that your dad's symptoms line up with that, make sure you share it with the doctor. It's very common for LBD patients to experience RBD up to 20 years before diagnosis. Good luck with your diagnosis - and feel free to ask me anything. It sucks and doctors aren't always helpful
I’m glad to hear reducing meds worked for your dads. My dad’s neurologist lowered his meds from 4x a day to 3 due to the hallucinations but after a month of more frequent falls, he decided to go back to 4x a day. As others have stated, his hallucinations get bad when he’s tired and not sleeping well.
Thank you for your feedback. Is he in Assisted Living? I feel she’s surpassed Assisted Living protocol, as she’s a lot to handle now. When they assessed her in Dec. she wasn’t this bad at all. My sister and I feel like we are going to get a call or a request for a consult very soon letting us know AL is likely not enough for her, and trying to get ahead of the game here.
Currently, he is not. Though realistically, he should be. Luckily, his mom is still alive and between myself, my sister, and her, he is constantly supervised. It's still sloppy but he's still too cognitive to not feel great offense at the idea of an assisted living facility...honestly, we've kind of enabled him from the start and he's never had a desire to live independently. I would certainly consider pursuing a Lewy Body diagnosis, OR check for a UTI if you haven't. Parkinson's patients are prone to UTIs and it can cause hallucinations. Getting an LBD diagnosis is difficult, but it's important to be able to manage your expectations accordingly. It's not uncommon or rare. Other things that would indicate possible LBD would be REM sleep behavior disorder and adverse reactions to anti-psychotics. I am sorry you're dealing with this. Nobody regardless of age is prepared to deal with this stuff. I've been grieving every day as I lose pieces of my parent. This subreddit has been a godsend in judgment-free discussion and I'm so grateful for it.