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My husband was diagnosed with Parkinson's and mild cognitive impairment about 4 years ago. Up until a month ago, the dementia was infrequent and not much of an issue. Suddenly, he started seeing people in the house, who he believes are my friends, and is now distrustful and agitated most of the time.....he even called the police one morning. His Neurologist prescribed Nuplazid but after 3 weeks, things have gotten worse. The Dr. wants to try a different drug but my husband refuses to even consider it.....he says the Nuplazid is working! I've tried to get him to call the Neurologist or our PCP but he refuses. When I tell him I'm going to call, he gets very angry and even called the Neurologist office and told them they no longer have permission to discuss his medical condition with me and threatened to destroy my phone. The Neurologist keeps telling me I have to convince my husband to take the new drug. I'm at my wits end!

So far I haven't heard any positive stories about Nuplazid. I know several caregivers whose doctors prescribed it for their loved ones with psychosis, and after a few months and $12,000 lighter in their wallets, went back to the doctor, were taken off the drug and prescribed an old tricyclic in lowest dose. I think the drug is imipramine and it's been around long enough that it's cheap.
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Reply to NYDaughterInLaw
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Sundowners? My 83 year old husband has Pseudo Parkinsonism, dementia, heart issues among other things. He saw people in the yard at night (no people). Went and sat in the car at midnight to "catch em". Using Seroquel and Aricept have helped but now it looks like "daytimers" (my term) may be there to. Will check out the Nuplazid, thank you.
I give him his pills in teh morning. Put the new one in the mix and say "here ya go" "Thank you- we're off on a roll for the day " has worked for me
Good luck and bless you
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Reply to Horseshoer
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Cflipping Jun 8, 2020
It's a rollercoaster ride for sure and sometimes I feel like I'm in the Twilight Zone! The Nuplazid is extremely expensive (thousands a month even with the Part D insurance). There is something called "The Assistance Fund" that you can apply to. The application process was pretty easy and they are covering the cost 100%. Only trouble is, it's not working for my husband.......perhaps you'll have a better outcome. Good Luck to you as well.....thank you for your resonse! www.TAFcares.org
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After so many years of shared decision making it must be difficult to suddenly be placed into a situation where you must make decisions, and keep your husband in the dark about those decisions. However, given his dementia, it is the best thing going forward. You have the authority, and you must use it to keep both of you safe.
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For long term options, you might want to consider contacting a SW with your local Area Agency on Aging (AAA). The SW was able to help me a lot when I was searching care options for a neighbor, not only providing a list of every LTC facility (and highlighting the ones she thought most met senior's needs and the ones we should avoid) but identifying what programs might be available to help with payment.
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Has he been checked for a urinary tract infection?

This could be the problem as it is escalating with time.

It sounds like you are at a place where you need to make decisions for the future. You can not care for him if he doesn't allow you to. What are the plans for the time that you can not do anything and he is failing?
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Cflipping Jun 7, 2020
Thank you for your response. It has got me really thinking about 'long term' as I've mainly been focusing on just getting through each day and the challenges it brings. I'm hopeful that our PCP will be able to guide me towards local resources to assist me in getting a plan in place. God bless.
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I'm hoping at this point in his prognosis that you have medical and durable power of attorney for him. With those in place you can freely talk to his Dr's either in person, on phone or the patient portal. You don't need to ask your husband for permission or even let him you know that you are talking to them if it will save you from his outbursts. Sadly paranoia is common with Parkinson's, but I know there are medications available to help with that, and you need to make sure that he's trying and taking whatever he needs to, even if it means you are crushing them up and putting them in his food unbeknownst to him. I also put my husbands medications in applesauce as he has some trouble swallowing, so you could try that too. (or pudding or ice cream) And I will say, don't share with him everything that you're doing with his Dr's , if that seems to upset him. Just do what needs to be done to get him the help he needs, and hopefully your household will be more peaceful. Best wishes.
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Reply to funkygrandma59
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Cflipping Jun 7, 2020
Thank you so much for your input. Yes, I do have durable POA and I have been in communication with the Neurologist through the patient portal. Intellectually, I know I have the ability to make whatever arrangements are necessary but I'm still struggling with feelings of doing things 'behind his back'. We've shared decision making for 30 years....I know I need to shift my mindset for both our sakes but it's easier said than done. Dementia is such a cruel thing! I appreciate your suggestions. God bless 🙂
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Has the PCP or neurologist discussed hospitalization and treatment by a geriatric psychiatrist? Your husband would likely spend 1-3 weeks in the hospital while they find a medication that works and stabilizes his condition. My understanding is seeing people that are not really there is a common symptom of Parkinson's Disease, particularly when mixed with other dementia types.

I suggest asking for a geriatric psychiatrist recommendation and call him/her to arrange hospitalization.
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Cflipping Jun 7, 2020
Thank you so much for responding. This sounds like an excellent short term solution.... I will reach out to the Neurologist today about this option. God bless you!
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