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Nikitu Asked January 2022

My mother has been in a constant hallucianatory state since 1.5 years ago. Does anyone else have a similar experience?

I have been reading posts in this forum for a year and half now trying to find experiences similar to ours.
Here is our story such as it is.
My mother, who is now 63, had completely lost vision in her left eye about 10 years ago due to a tumor that pressed on her optic nerve. Tumor had calcified in the meantime but vision was irreversibly lost. Due to this tumor she had an MRI every year for the past 10 years. She also had a stable small meningioma in the frontal lobe that never caused any trouble.
About 2 years ago, after the family dog had died, she started to exhibit strange behaviour such as insomnia, periods of time when she would be aloof (for lack of a better word), taking longer that normal to do things around the house, constantly complaining that her vision has gotten worse in her good eye, seeing things that weren't there (that we thought were because of her bad vision)
In July of 2020 I took her to the eye doctor and that is when I started noticing a lot of issues. She would not hold her head straight and she had to be forced into the eye examination machine, lack of understanding. From here on she deteriorated fast, that very night she started hallucinating saying there are people in the house. She would be better in the morning and worse at night. Neurologists said it's not her brain and we were refered to psychiatry who said she had depression and put her on serotonin regulators and also memantine. She started loosing the ability to care for herslef, she became more and more confused.
I tried helping with cognitive exercises and this is where we realised she can't do substractions without considerable help anymore, not even easy ones. At this point she had manic states when she would try to break the door to leave (we took her key), she would cry and hallucinate. My father would call us at night to calm her down and it became increasingly difficult on everyone (my sister, myself and my dad).
After a couple of weeks of this the psychiatrist put her on olanzapine (zyprexa) a antipsychotic. She became stable and we could reason with her for a short period of time but this medication was destroying her physically. She couldn't stand up straight, lose ballance, dressing and eating became an issue.
After about 1.5 months of this we changed psychiatrists.
This new doctor wanted to try something different and put her on a newer med, Abilify. She responded badly to it, manic states, more hallucinations. He tried switching her back and that's when she went into Malignant Neuroleptic Syndrome and we ended up in the ER.
After this episode she didn't walk again, she went from someone walking 2-3 miles a day to total bed bound.
We had a neurologist come to our home who gave us a prescription for some recovery meds that we had to put into her IV. He didn't suspect dementia either. Recovery to the point where she could just barely move her hand took a long time. I did exercises with her for months and she could barely stand on the sofa.
Hallucinations never stopped, she has very few touches with reality. She knows who we are most of the time but other than that she will tell you stories that make no sense, talk about children who don't exist and places she's never been to.
I suspected dementia so brought a doctor who gave her some tests, and said it's dementia but she can't really say what type it is. She put her on Rivastigmine and Memantine.
Her mother had Alzheimer's and I suspected some Lewy Body because of the constant hallucinations.
Since then it's been touch and go, she was doing a bit better but now is going downhill again, lives only in her world and slowly losing the ability to chew her food. All the progress in ability to move has been lost in the weeks since Christmas. There is no infection so it's just progression of dementia.
I was wondering if anyone has had a similar experience?
Thank you all for reading.

AlvaDeer Jan 2022
I would say the course of any dementia, any mental illness, is as individual as a thumb print. I am so very sorry for all your Mom and your family are going through. It sounds as though there might be a combination of things going on, but as any neuro-psyc will tell you, this is anything but an exact science, and it often comes down to trying medications and med cocktails until one works; even when one DOES work it doesn't keep on working often enough. The one certainty seems to be that things progressively get worse and more challenging for families to handle 24/7 in a home situation.
I cannot imagine what you all are going through. I thank you for writing out your long story. The complexity and the completeness of your descriptions could well help others who may be dealing with several things at once.
My own brother was dealing with both a diagnosis of "probably early Lewy's dementia" which was diagnosed by symptoms (foot tapping, hallucinations and the type, occ difficulty with swallow. balance loss) and had also a calficified tumor found "incidentally" on MRI scan that may have contributed to his balance loss. Add to that when I went to his home I found a profound loss of handwriting that occurred overnight, leading me to think there may have been stroke active before his accident which landed him in hospital for an attempt to diagnose ALL of this. He died within two years, and after a move to ALF and my taking over all financial for him he did nothing but improve. So who knows really WHAT all was going on. I sure don't at this point.
I wish you all so much luck, and thank you for communicating your story.
Nikitu Jan 2022
Thank you for taking the time to read and reply to my post and for telling me of your experience.
We have certainly had to learn to live with this really fast. It was harder for my father and my sister, especially my father, he is the primary caregiver. We have a licensed nurse helping him and her refuses to take Mom into assited living mostly because he doesn't trust she would be well taken care of. She needs round the clock care from diaper change to something as simple as a glass of water. For a long time we did this together but we have to move on with our lives one way or another.
Just hoping this decline stops at some point, not sure about getting better but who knows.
Thank you again for your words.
SnoopyLove Jan 2022
What a heartbreaking situation, Nikitu. I am so sorry you and your family are going through this.

I hope others on this forum might have some helpful insights or suggestions for you.
Nikitu Jan 2022
Thank you for your kind words

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