Early onset Alzheimer’s and/or mentally ill munchausen horror movie. Either which way I need advise.

MPH91 · November 2021

I return to this board every couple years when I’m totally lost and today is one of those days. Sorry if my story is familiar to anyone here, it’s a grim situation that hasn’t changed for 6 years. I know everyone here is dealing with their own tragedies so I appreciate any insight into my very complicated situation. My questions are all at the bottom two paragraphs.

My mother (67) “has Alzheimer’s” and now her primary caregiver, my dad, was diagnosed with stage 4 lung cancer in 2020. I use quotations for my mom because I simply do not believe she has dementia. Maybe MCI at most with severe mental illness. She was diagnosed 6 years ago, she has maintained perfect memory (better than mine. I am 30 years old.), she has all her ADL capabilities more than in tact, she passed all her neuropsych testing with flying colors upon diagnosis, but her brain scans exhibited Alzheimer’s pathology so they stamped the diagnosis on her medical records and here we are.

More history on her: My mother has struggled her whole life with mental illness. She was abused as a child and she’s just always been very troubled. Her diagnoses over the years ranged from depression and anxiety, to borderline personality, PTSD, and at times bipolar disorder. Her personality disorder was a constant, but massive episodes of deep depressions would come in waves every couple years and last several months. She was always on and off various antidepressants, and later benzos.

About 7 years ago, she had a completely unthinkable meltdown that differed from the rest. She lost her ability to sleep completely and was physically addicted to benzos. It was a horrible mess that lasted about a year. One psychiatrist suggested she see a neurologist given her sudden meltdown in middle age (she’d been doing very well and was a high functioning working person for quite a few years). She went to be evaluated by a neurology hospital in NYC. They said she did very well in her neuropsych testing but they gave her a SPECT brain scan which showed Alzheimer’s pathology. The MRI she’d received prior to that just said something like “some age related white matter changes”. We took her for a second opinion, this time another top rated neurology hospital, and they officially slapped her with an Alzheimer’s diagnosis based on the findings of her SPECT scan despite her also testing very well with their neuropsych.

She resigned from her job almost immediately upon diagnosis. My father maintained working full time while assuming a caregiving role for her until his cancer diagnosis in 2020. Don’t ask what my dad’s caregiving entails when a person is still entirely capable but wildly mentally ill and unmedicated... Cooking for and cleaning up after a verbally abusive screaming woman, and sometimes playing board games with them.. She used to spend countless hours poring over medical papers about black box warnings that she’d later use to defend why she refuses to be medicated, she’d Google and study videos of people in their end stages of Alzheimers, people who developed aphasia. Now she speaks in an aphasia-like baby voice when she is around me and my dad but turns it off completely if there are new people around. She “babbles” incessantly when she knows we are home but is completely silent when she thinks she’s alone (she’ll resume babbling as soon as she hears she isn’t alone). She screams when she doesn’t get her way. She used to get violent so once or twice we called the police and they brought her in for evaluation, but she instantly charmed her way out of being held for evaluation. I can’t begin to explain how difficult it has been to spend more than 5 minutes with her over the years, so it’s really no surprise that my poor papa is now sick.

This is a long but still summarized explanation of our situation. It’s so much more complicated. I’m now taking care of my dad, coming over every few days to help him while he undergoes various treatments. He continues to “take care” of my mom, refuses to let me try to get additional helpers in. The dynamic is just nauseating to me but it is what it is. I’m sure I lack the sound of empathy in my description. I love both of my parents very much. I feel as though we’ve been trapped in this dramatic Münchausen syndrome of a nightmare. I recall hearing that brain scans as sensitive as a SPECT or an MRI scan can reveal brain changes years, even decades, before any symptoms ever come to fruition if they ever do at all. So those A+ neuropsych tests are important considerations for me. It’s heartbreaking to feel this way. It makes me so sad that they are suffering, that my mom has basically wasted the last 6 years of her and my dads life. I was 24 when this all started so her illness, whatever it is, has dramatically altered my life in ways I’m not even aware of yet. If she’d only allowed herself to receive adequate mental health care when this whole thing began…

Anyway. She has this diagnosis like a permanent tattoo now, whether it’s accurate or not remains to be seen and I don’t think such a diagnosis is even reversible so I’m forced to just play along forever and seek out the next path.

Emotions aside and to put it bluntly - I need her to be medicated/stabilized and in a living situation that is nice and consistent for her so I can move on with my life when my dad is gone. I’m not able or willing to care for her. Previous attempts at hiring in home caregivers to play along have all quit after 1 week with her (she’s too verbally abusive). What would you do if you were me? When this is in my hands, do I just keep calling the police until they hold her for evaluation? How do I make sure she is actually held for evaluation? Could anyone share their experiences having a loved one with dementia psychiatrically evaluated against their will?

Their house is also in an urban area in a flood zone and eventually it will be dangerous for anyone older to live there and maintain. My dad is too sick to deal with selling it and he doesn’t want to so this will also be on me eventually. She says she refuses to sell and her name is on the house. Do I just let her be at home alone until she goes willingly or do I force her into an assisted living? We are not wealthy so I don’t know how we’d pay for that. I’m hoping to speak with a lawyer soon about all of that but appreciate insight there.

Thank you in advance for reading and attempting to advise .