My husband has Parkinson’s with Lewy Body. The Dr says he is “end stage.” Lately, he has been having hallucinations, imagines he is going somewhere or that someone is coming over, he thinks we have had conversations that we have not had, and he often says things that make no sense at all. He uses incorrect words or names. When I am confused by what he says, he gets angry with me, even accuses me of trying to make him crazy so I can “put him away.” Lately, he has made comments that make me uneasy. He has been talking about dying, which is not new. But he has talked about the dog dying; that he dreams of killing the dog. This dog is a service animal as well as a beloved pet. I told the LPN about his comments. She said she has not had a patient do that before. She had no advice except that I not leave him alone with the dog. Anyone else had such an issue?

My husband has Stage 4 Parkinson's and last week on Monday and Tuesday dealt with Hallucinations where my husband was yelling and screaming that there were people trying to attack him and he had to get to the staircase to get away from them.

The next day called his Neurologist and told him what happened and his Dr put him on QUETIAPINE and it seems to help.
Last month at 2 am and another night at 11:30 had another episode of yelling and screaming and very agitated so when l talked to his Neurologist he said that what he was experiencing what something called SUNDOWNERS because these episodes happens late at night also Psychosis
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Reply to BLUEBIRD2

From your profile, your husband has multiple neurological, medical, and mental health issues that could be responsible for his behavior. I would suggest a visit to the ER to rule out an infection, a new injury to his brain, a blood chemistry imbalance, and/or a mental health issue that needs to be addressed. Because this behavior could have one or more causes, it will take a multi-pronged approach to evaluate and treat.

Meanwhile, make your home as safe as possible - no weapons, keep items that could be used as weapons (ropes/cords, knives, heavy items...) secured. If you feel the pet is going to be injured, get the animal to a safe place with a family member or friend until your loved one's mentation improves. If you feel threatened, call 911.
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Reply to Taarna

Sometimes the meds have those side effects & maybe just the disease. My 97 year old mother with dementia has conversations with herself and answers for both imaginary friends. Sometimes she talks for 24/7 nonstop. So, to answer your question, no it’s not uncommon or unusual…for people who are diagnosed with these conditions. The LPN never came across this, but she probably not experienced with it.
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Reply to CaregiverL

Penguina: Replace the LPN posthaste! The statement made by the current LPN "She said she has not had a patient do that before" in reference to the dog is absurd!
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Reply to Llamalover47

We have a friend that does this and he has the same type of dementia Robin Williams had lewy body dementia. Use to hallucinate while sleepy now when he is awake. Talk to the doctor maybe see if anything can help curb it.
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Reply to RedAlert75

I've read that lewy body deprives the brain of all are happy chemicals, it blocks those chemicals from reaching the brain, and can make them very depressed and mean. So it is not his fault, it's the deasses. And don't correct him his brain is broke. He is not himself and he can't help it

So please do make sure he is not alone with the dog, and do start thinking about a facility, it's time to start looking ahead because this is not going to get better.

We are here to help support you though this very difficult time. Best of luck, to you
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Reply to Anxietynacy
Penguina May 27, 2024
I’ve applied to numerous places. The only one to reply that they have a bed available wants $10,500 a month plus a bunch of add ons. We cannot afford that. I’m hoping to get him in a Veterans home. No reply to my application with them yet.
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My husband had PD-5 programme about 4 months ago. Tremors in his hands and jaw are gone. It doesn’t make the Parkinson’s go away but it did give him better quality of life. we got the treatment from abilityhealthcentre. com
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Reply to katherinebh
Evamar May 30, 2024
what is PD-5 programme? My husband is reaching advanced stage of Parkinson.
Medication would probably help, but prepare for worse. It’s time to scope out memory care facilities. There comes a time when home care is no longer adequate, and it appears that you’re there.
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Reply to Fawnby

With Lewy's this severe I hope he is not being left alone PERIOD. EVER.
Yes, I had a brother with Lewy's.
Yes, the hallucinations are horrifically REAL at the time they are being suffered. That is to say the sufferer can give a very detailed description of what they are seeing.
You say your husband becomes upset when you are "confused by his hallucinations". Does that mean you are arguing with him about them, correcting him about them? Because with your long history with him you certainly do know better than to do such a thing?

Now we are down to what to do about hubby and the dog.
To be honest, this isn't about the dog at all.
This is about your hubby and his end stage Lewy's.
You are in charge now of one of the toughest decisions of your life. You husband, imho should be placed now, for his own safety and for the safety of ALL OTHERS including the dog, you and the LPN.

I am so very sorry. This is terribly sad. My brother died of sepsis before his Lewy's could progress further than a few short lived hallucinations and full blown dementia. I will be forever grateful for that, as he was.
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Reply to AlvaDeer

What sort of LPN has not heard of elders with LBD or any kind of dementia and hallucinations threatening violence????? If your DH is bedbound, you can keep the dog out of his room easily enough. If he's up and walking around, you cannot do that.

If DH is at the end of his life and you are getting "burned out, angry, depressed, short tempered", and now with talk of killing the dog, have you considered placement for him? For your sake as well as the dogs. He can easily turn against you if his brain damage sends him the wrong message. I'd take this situation seriously if I were you.

Best of luck to you.
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Reply to lealonnie1

From your profile:

"I am caring for my husband, who is 77 years old, living at home with age-related decline, alzheimer's / dementia, anxiety, depression, incontinence, and mobility problems.

...Six grown children, seven grandchildren, one great grandchild. None live close. None visit due to fights with my husband. Husband fell, had brain bleed, 12 weeks in hospital and rehab. Developed MRSA, had surgery, developed C-Dif. On IV antibiotics. Came home with pic line and continued IVs that I administered. Developed Lewy Body dementia. I asked for help but system determined Medicare would not pay for home health care beyond monthly home visits and medication management. He was released in wheelchair. Thru self care and exercise, he is now able to walk, though very shaky and weak. Intermittent bouts of dementia and depression. I am getting burned out, angry, depressed, short tempered. "

Since your husband is at home, and based on your profile info he seems to still have some mobility, if he ever owned guns or hunting rifles I would discretely remove those completely. When my SFIL was doing the same thing (threatening to shoot us, his family) we did this, but also was told by social services that the police (and social services) would not enter the house if they were unsure firearms were present.

If he is not on medications for his depression, anxiety, hallucinations, why not? If he is, then I'd ask his doctor about adjusting his meds. He needs help regulating his emotions and it's merciful to do it by any means, including medication.
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Reply to Geaton777

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