Dementia: Dealing with husband's hallucinations and fatigue

Posted by adv @adv, May 30, 2020

My husband has dementia. Has been on
Haloperidol 0.5 2 X day. He is terribly exhausted all the time. Wondering if I could cut it to 1 X day. This med is the only thing that got his terrible hallucinations under control. Would appreciate you info. Thanks

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@adv I’m so sorry your husband has dementia and is dealing with the side effects. I’m glad you’ve found Connect. We’re volunteers not medical professionals so we can’t give medical instructions, but I will say, don’t cut the dosage without talking with his doctor first. You just don’t know what will happen. See if you can get an appointment for your husband, explain what is happening, and see if there is a better medication for him. Does that help some? Let me know what you learn

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Neurologist said I could go to 1 pill a day instead o 2. When I did he began having bad dreams so went back to 2. He has been hospitalized at least twice for extreme fatigue. Diagnosis has beendehydration and fatigue due to not moving enough. He has difficulty walking w Walker. Keep encouraging him but still complains can't walk. I asked neurologist if he might have
Lewy body dementia. She says it doesn't matter what type he has. He would still be the same.
Does the fact that every brain scan he has had.... CT scan SPECT SCAN & MRI all come back with good results. No brain problems.
I am at a loss for how to help him. Is there anywhere in the Dallas Tx area that can give me a more defined diagnosis or any good advise.
Any assistance you can give me will be greatly appreciated.

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Would you consider a consultation with another neurologist? Call a university hospital or your family physician and ask for a referral.

It was interesting that I had a physician tell me today that is was not his prescription causing my problem and I should call another doctor(who actually told me that this med could cause these symptoms!!.... cause the problem that I am having!

We have to advocate for ourselves. The physician who warned about the other doctor’s script has a scheduled phone appointment with me. 🙏 Thank you!

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@adv

Neurologist said I could go to 1 pill a day instead o 2. When I did he began having bad dreams so went back to 2. He has been hospitalized at least twice for extreme fatigue. Diagnosis has beendehydration and fatigue due to not moving enough. He has difficulty walking w Walker. Keep encouraging him but still complains can't walk. I asked neurologist if he might have
Lewy body dementia. She says it doesn't matter what type he has. He would still be the same.
Does the fact that every brain scan he has had.... CT scan SPECT SCAN & MRI all come back with good results. No brain problems.
I am at a loss for how to help him. Is there anywhere in the Dallas Tx area that can give me a more defined diagnosis or any good advise.
Any assistance you can give me will be greatly appreciated.

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Hydration is so important. My daughter is a P.A.
and wrote about the importance of hydration.
Do you have a registered dietitian or physician’s assistant who can consult with you? They often have more time than physicians.

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@adv

Neurologist said I could go to 1 pill a day instead o 2. When I did he began having bad dreams so went back to 2. He has been hospitalized at least twice for extreme fatigue. Diagnosis has beendehydration and fatigue due to not moving enough. He has difficulty walking w Walker. Keep encouraging him but still complains can't walk. I asked neurologist if he might have
Lewy body dementia. She says it doesn't matter what type he has. He would still be the same.
Does the fact that every brain scan he has had.... CT scan SPECT SCAN & MRI all come back with good results. No brain problems.
I am at a loss for how to help him. Is there anywhere in the Dallas Tx area that can give me a more defined diagnosis or any good advise.
Any assistance you can give me will be greatly appreciated.

Jump to this post

Good morning @adv. Have you been able to find out anything on medications or the fatigue you husband is experiencing? I agree with @helenfrances who suggested a 2nd opinion or a referral to a major medical center. Is this something you could look into?

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I agree with Becky@becsbuddy and also Ellen@helenfrances. I am not a medical doctor and cannot give you medical advice, but I just attended a seminar on Lewy Body Dementia. (LBD). With this kind of dementia, 80% of the patients with it have hallucinations. Not auditory, but they actually see people, animals and children that are not there. They often have Sleep Behavior Disorder (SBD) and can violently act out their dreams in their sleep. The speakers stressed that antipsychotic drugs are NOT good and can really cause a lot of problems in people with LBD. Neurologists sometime prescribe them so that the patient will get better sleep, but they repeated several times that antipsychotic drugs are to be avoided. They can really make people very sleepy which can allow them to fall, etc. They can cause a movement disorder. See the page from the Mayo Clinic on this subject. Google Mayoclinic.org and search Haloperidol. I am sorry you are facing these difficulties. My best to you. Virginia Naeve (www.anewpathformom.com)

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Good morning @adv I found the Mayo Clinic information on haloperidol. It does mention all the side effects
you have seen with your husband
https://www.mayoclinic.org/drugs-supplements/haloperidol-oral-route/precautions/drg-20064173

Have you considered seeing another doctor? Ask your family doctor for a referral or contact a large medical center near you. He might need to be re-evaluated. As for the dehydration, try popsicles, watermelon,grapes, especially in this hot weather. My sons especially liked partially frozen orange juice.. Let me know, please

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We had an appointment with another neurologist but postponed it when the corona virus # went up in Texas. I plan on another appointment soon. My husband has good & bad days but mentally he has stayed pretty stable. But it seems like his body is most affected. Sometimes I feel like he might have Parkinsons. Neurologist thinks it's age related dementia.
It's time for a second opinion.
I really appreciate everyone's input.

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@adv

We had an appointment with another neurologist but postponed it when the corona virus # went up in Texas. I plan on another appointment soon. My husband has good & bad days but mentally he has stayed pretty stable. But it seems like his body is most affected. Sometimes I feel like he might have Parkinsons. Neurologist thinks it's age related dementia.
It's time for a second opinion.
I really appreciate everyone's input.

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Did anyone tell you that Lewy Body Dementia can most definitely be a part of Parkinson's disease? Also, I'm cringing at the sentence Neurologist thinks it "age related dementia". Unbelievable. Good heavens!

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Definitely get a 2nd opinion. Good luck too. It's Good to get a straight forward diagnosis so you will know-what to expect and how to care for your husband. Caregiver support classes also recommend.

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