Beginning stages of dementia with hallucinations. Any advice?

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My husband was diagnosed about 3 months ago with dementia by his primary care doctor. We went to a neurologist for a second opinion and, to my dismay, found the primary care doctor was right. He (my husband) has been hallucinating horribly. People are coming into our house at night and he says they have guns and he's afraid they're going to shoot him. He thinks they are trying to take our house and he's not having any part of it. In fact, I found him one night sitting in his chair in the front room with a loaded rifle!! I managed to get it from him and I've hidden all his guns, which infuriates him. I tried to tell him that, what if he was startled by my coming down the hall and shot me. "Oh, I wouldn't shoot you," he said. No, he wouldn't intentionally, but I still have them hidden. I don't know how many times he's changed locks on our front door, and we now have a security system installed. I've done everything to appease him, but nothing seems to work. The people are still getting in. I believe this all started when he got a blood infection a year ago. He hallucinated in the hospital, but I thought it was the infection and drugs he was getting. Am SURE that's where it began. The doctor put him on Divalproex about a month ago and at first I thought it was doing some good, but his getting me up to walk through the house with him at night has started all over again. The people never did go away, but weren't as threatening.
He’s fine during the day (except he still thinks the hallucinations are real). He functions fine and remembers things just like normal. It’s just these night time and early morning episodes that are getting me down. I’m not well myself (have COPD) and am beginning to become very angry. I know it’s not about me, but it’s getting almost unbearable for me to cope with this every night. I just need some place to vent once in awhile and find some help from others who may be going through the same thing.

Thanks for ‘listening’

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Google "Alzheimer's Centers of Excellence" and "Lewy Body Centers of Excellence" for the best treatment centers and see if any of them are within a few hours of you. It's worth it. www.nia.nih.gov/health/alzheimers-disease-research-centers
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Reply to jjariz
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If you'd like to research LBD before the next doctor visit, the Lewy Body Assosication website, LBDA.org, is an excellent resource.
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Reply to jeannegibbs
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Thank you all for your responses. I appreciate them all. Since venting here the other day, I’ve perused different website blogs and support groups and after reading some of the things others are dealing with, mine doesn’t seem so bad. However, I know that in time, this will progressively worsen, but for now, at least I can enjoy the time we both have together as a ‘normal’ couple. He’s a good man and I am blessed to have him in my life. We’ll be married 17 years next month . . . both of us were widowers. I’m definitely NOT throwing in the towel

Caregiverology – I have removed the guns already under the advice of my adult children. Little did I know that he had another one (a small hand gun) which I’ve also removed. He is not happy with me at all over this and I’ve tried to reason with him that it is not a good idea to have them in the house. I promised him I didn’t sell them; that they are still his and he can have them back when he is well again.

BarbBrooklyn – We are in the process of getting in to see another neurologist because the one he’s been going to (only 4 visits) has left the area. Now we’re having to jump through the hoops again, getting a referral from his primary care doctor to get an appointment. Seems neurologists are hard to come by around our area and when a good one does come, he doesn’t last long. We were supposed to have an appointment again on the 26th, but no telling now how long it will be. He has had an MRI, CAT and ultrasound and all were ‘normal’ for a man his age (he’ll be 74 in October).

I did document all the happenings on the computer and am continuing to do so. I printed them out for the doctor to see and put in his file.

Yes, I was beginning to be fairly satisfied with the doctor; hopefully the new one will prove to be as good or better. I know time takes time . . . finding the right medication is a hit and miss thing because what works for one may not work for another. Will tuck your idea of a geriatric psychiatrist in my memory banks. Thanks for all your advice.

Jeannegibbs -The ‘kind’ of dementia wasn’t mentioned, and I wish I’d had thought to ask. But, experience is the best teacher they say. I’m learning what kinds of questions to ask this next doctor. Besides advice here, I’ve been doing a lot of searching on the internet for information.

My ‘thought’ is that it could be LBD because this is all that’s going on with the poor man right now. He’s fine during the day and remembers things fine (sometimes better than I). The hallucinations start about 1-1:30 am every night . . . actually, he starts moving around in bed then and talking. Can’t understand a lot of what he says, but once in awhile there’s a clear word or sentence (especially when he’s swearing at these people). He gets up then and patrols the house, looking in every closet, behind curtains. Says he sees people in the front bedroom bed, but when he turns on the light he says they dive under the bed and he can’t find them then. Am going to ask the doctor about that new drug you mentioned and see what he says. Besides the Divalproex, he has been taking Donepezil (which is the Aricept generic) by his primary care doctor for 3 months when he was first diagnosed by him. Just doesn’t seem to be doing any good.

Thanks again to all of you!! Means a lot.
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Reply to Bobbijo38
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Congratulations! You have found a safe place to vent.

My response is loooong. Sorry 'bout that. If you have time to read it, I hope it will be helpful.

In ALZ, hallucinations tend to happen (if they do) fairly late in the progression. In Lewy Body Dementia (which my husband had) hallucinations may be the very first sign that something is wrong.

Has the neurologist suggested what type of dementia your husband has? Sometimes it is a somewhat wait-and-see activity, as more symptoms emerge. Have you discussed the hallucinations with the neuro doc? BarbB's suggestions about keeping a log and discussing it are good!

Many times hallucinations are benign. That is, they are not upsetting to the person having them. I recall my husband seeing bats in our bedroom but he was perfectly OK with that and agreed to go back to sleep and we'd chase them out in the morning. (Bats in the bedroom would not have been "benign" for me!) If they don't bother your husband, there is no need for you to worry about them. But obviously seeing people in the house with guns is not benign for him. That is why this needs to be discussed with his doctor.

Hallucinations involve seeing (or hearing) things that aren't there. Delusions involve believing something exists or is happening, etc that isn't. If your husband sees threatening people outside his windows, that is an hallucination. If he simply believes they are coming soon or they are hidden, etc. without seeing them, that is a delusion. I just mention this so that you can be clear about it when discussing with medical folks.

There is a new drug on the market now, that wasn't available when my husband was hallucinating. NUPLAZID® (pimavanserin) is the first and only medication approved by the FDA for the treatment of hallucinations and delusions associated with Parkinson's disease psychosis. LBD is closely related to Parkinson's Disease with Dementia, so that a medication that works for one often works well for the other, too. I suggest asking the neruo doc about it. If he/she says OK, let's try it, or Not at this time because ...., fine. If the answer is What is Nuplazid?, I would really wonder if you have the right doctor.

Is your husband taking Aricept? That was helpful in reducing hallucinations for my husband (although it is not effective for many people). My husband also took quetiapine (a drug for hallucinations in Schizophrenia Spectrum Disorders) for nighttime disturbances. Now that Nuplazid is available, I don't know if quetiapine will still considered best practice, but his doctor should be up on these things.

Do these episodes only occur after he has gone to bed? Sleep disturbances are common in some kinds of dementia. In fact, my husband saw both a neurologist and a psychiatrist specializing in sleep disorders.

Dealing with a spouse who has dementia is very, very stressful. I think it is worse when the behavioral symptoms come on very early, before you've even had time to adjust to the cognitive impairments. From personal experience I can tell you that there is hope of some symptoms calming down, there are some treatment options that can help, and there are techniques you can learn to promote harmony. Three months is too soon to throw in the towel but it is certainly not too soon to seek as much help as you can get! (And even 3 days is not too soon if there is violence or belligerence involved.)

Joining a local support group for caregivers of persons with dementia (or the specific type of dementia, if that can be determined) can be a sanity saver! So can an online forum such as AgingCare. My local support group for caregivers of persons with Lewy Body was amazingly helpful.

In addition to agreeing with BarbB, I also agree with Caregiverology. Please remove the guns from the house. We've heard of a case where the guns were locked in a case with a glass front, and the person with dementia smashed the cabinet with an ax. Sigh. Best just get them out of the house.
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Reply to jeannegibbs
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Okay, so he's on Depakote, which is a mood stabilizer. It doesn't seem to be working all that well, does it?

Have you been back in touch with his doctor about his continuing symptoms?

My understanding is that sometimes, the specific kind of dementia can be discerned by the absence or presence of hallucinations and/or delusions. I think it's important that you contact his doctor and tell him very specifically about what symptoms your husband is showing, when, for how long, what time of day.

Keep a chart in a file or a notebook. Are you satisfied with his neurologist? Does he specialize in the behavioral aspects of dementia? Might you want to add a geriatric psychiatrist to your husband's "team"?
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Reply to BarbBrooklyn
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I am sorry for your troubles. The part that worries me the most is the gun situation. Of course he would never intentionally hurt you but dementia can be highly unpredictable so hiding them was a great idea. I would argue that you may want to consider taking it a step further and remove them from the house completely, at least for now. I own a gun myself so I am not against owning one, but if he has another period of confusion and somehow found where you hid them, it's not unreasonable to suggest something devastating could happen. It puts not only you and your husband in danger, but also your neighbors and anyone else nearby. Best of luck.
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