My mother is 79 years old and has a complicated medical history which includes heart disease, diabetes, early stage kidney failure, hearing loss, and narcolepsy. With all of that, she is actually I. Surprisingly good health. In late a November or early December 2021 she started mentioning hearing “buzzing”. This turned to music and then progressed to voices. She went through neurological testing but nothing was found. At this time testing did not work Ben qualify her for an official dentist diagnosis. Her hallucinations began as “friends” but then progressed to more paranoia. In May she had an episode in which she tried to leave the house to find the people and when my dad tried to stop her, she attacked him. As a family we agreed to have her admitted into a geriatric psych facility hoping that they could find some reasoning for her hallucinations. She was hospitalized for about 3 weeks during which the first two weeks she was coherent and lucid. She knew everyone who came to visit, kept up with date and time, and knew where she was and what had happened. However the hallucinations were still happening. The first plan of care was to take her off as many meds as possible thinking that perhaps she had medical psychosis. After 2 weeks they increased the psychiatric meds and when my father went to visit her, she was barely coherent. They discharged her home to hospice care and on 4 different psychiatric medicines. While home mom quickly declined from shuffling and needing 80% assist to needing 100% assist. She was not swallowing, she slept most of the time, she didn’t know who we were. She presented as if she had late stage dementia. We found out that in the hospital after one dose of seroquel the meds were discontinued because of of “lasting sedation”. The hospice team agreed to take her off all psychiatric meds and, after about two weeks, she started showing progress. And she kept showing progress. She is now almost 100% Independent. She has very mild memory and cognition loss. I’m a speech therapist and administered two tests to which she scored within normal limits! During her recovery she remembered the voices but said that they “must have moved” but apparently it has started again. Mostly, she is convinced that there is a woman who is after my father. She refuses to let him be at the home by himself. If he is working in the yard she has to be out there watching him. She thinks that he hears the woman but doesn’t claim it. She questions everything he says or does. He took such good care of her and he wants to continue to, but it is wearing him (and us!) down. She gets mad if we don’t believe her and she will refuse to do things like go to town with one of us of he is going to be at Home by himself. My dad, who is 80 is in excellent health, but is as stubborn as the day is long. You can imagine there ar swine clashes! Mom is so lucid all go the other times that it is hard to just say “it’s just the disease”, but, per our story you can see why we are hesitant for medications. She is still on hospice care (for now) so she hasn’t been to a physician in a while. I’m reaching out because 1. We’ve not heard of a case quite like hers and hope maybe someone has experienced something familiar and 2. We just want to find some strategies to help my sweet dad cope.
This is what I found under Narcolepsy
Excessive daytime sleepiness. People with narcolepsy fall asleep without warning, anywhere, anytime. ...
Sudden loss of muscle tone. ...
Sleep paralysis. ...
Changes in rapid eye movement (REM) sleep. ...
Hallucinations.
Hallucinations seem to be a symptom. You need a Sleep Specialist for this.
Your Mom has heart desease and kidney failure added to this. Her Carotid artery maybe clogged and not enough oxygen getting to her brain. Her kidneys may have worsened and toxins are in her blood stream causing Dementia like symptoms.
Personally, I would stop Hospice for now and get her to the Specialist. He can order Lab work and give her the correct medicine.
Take Mom to her primary doctor, or you can even go to an urgent care clinic where the test can be done and the results while you wait.
There are seldom good answers to a dementia situation. You can't find reason or logic from a chaotic mind, that's not possible. So what you focus on now is keeping mom calm and as delusion free as possible via meds so that everyone's life is more manageable. When and if that doesn't work, the only answer left is placement. Dads life is just as important as mom's, meaning he's entitled to peace in his own home and just bc mom is delusional doesn't mean HE should be expected to find coping mechanisms to deal with this level of nonsense! Realize the nature of dementia is not linear......she will have moments of lucidity and other moments of being totally unhinged. This doesn't mean she doesn't have dementia.....its just the nature of how the disease acts!
Furthermore, if mother was in such great health, she would be released from hospice bc Medicare only pays for the exorbitant costs when the patient is thought to have 6 months or less to live. Period. There's no leeway within those rules.
If she is thought to have 6 months or less to live and stays on hospice, then the sedating drugs are just exactly what she needs to calm her down and what dad needs to help him cope.......at end of life, the only goal is to keep the patient comfortable.
If all else fails, then your mother needs placement in a Memory Care Assisted Living facility for both of their sakes.
Best of luck with a difficult situation.
If your Mom has heart disease she *may* have vascular dementia - just un-diagnosed. I find it a very difficult dementia because it can make you crazy with how much it comes and goes...but it's always getting worse...but just not in a clear, linear fashion at times.
I'm not saying your Mom has vascular dementia...but she might? It's entirely possible...but if I were you - maybe get her to a cardiologist and have her meds evaluated again. Sometimes those psych meds can interfere with the heart meds too - make things worse...and that could lead to oxygen deprivation to the brain and hallucinations. Just an idea.