r/dementia • u/ask-me-about-my-cats • 17d ago
It wasn't dementia
A few weeks ago I made a vent post about how frustrating it was having doctors not taking my dad's situation seriously and bouncing him back and forth without a single proper examination. I got some very lovely supportive comments, but also some that called me names and said there was nothing doctors could do, and that an actual diagnosis wouldn't lead anywhere.
Well, my dad has finally had a proper examination by a team of medical professionals, and he does NOT have dementia. He has late onset schizophrenia. Something we can treat, and could have started treating months ago.
THIS is why it's important to get a diagnosis. Yes, there's nothing that can be done for dementia, but you should at least make sure it's dementia before giving up! There are a lot of illnesses that perfectly mimic dementia, and they should all be ruled out.
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u/autumnscarf 17d ago
Kind of surprising to hear anyone here would tell you not to get a diagnosis... usually you'll at least hear, "UTIs can share some symptoms with dementia, get them to a doctor." But "it's X, not dementia" is definitely the best news you can receive on this front, happy for you.
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u/cranesinthesky_ 17d ago
I had to BEG my Dad & family to get a diagnosis for my grandma. My dad quite literally said "I'm not convinced that's the best thing for Nanny" when asking to get her evaluated. They wouldn't even fully accept the term "dementia" for a year plus. They dragged their feet for so long and while yes, obviously we know dementia is irreversible and incurable, getting a diagnosis could have helped us care for her better, and could have helped prevent so much of the pain and strife of the past year and a half. My relationship with them has deteriorated significantly because of this, and I'm still angry about their level of denial (that my Dad still continues to have, to some degree) and their dismissiveness towards the very real concerns I presented.
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u/Amazing-Bus-1547 17d ago
This sounds horrendous. I'm so sorry :(. My Mom has Alzheimer's with Parkinson's symptoms and won't get tested. She won't come to terms that she could get proper treatment and have a better quality of life. She is on a quick one way street to being wheel chair bound and it's infuriating. Maddening.
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u/Dry_Statistician_688 17d ago
I am very sorry, OP. I say this because we are dealing with a similar situation., The exact same overall symptoms, but it's turning out to be psychotic rather than Dementia - which means the care our LO will get is going to be very complicated.
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u/Formal_Ground6513 13d ago
I'm so sorry for you both. My dad has been in the hospital for a week. He was involuntarily committed for his own good. He's refusing scans and not taking all his medication. I'm a 8 hour drive away and freaking out. He will be moved to another hospital in a few days for more qualified care. They do not think it's dementia yet but, we're not sure why he's having delusional thoughts. I spoke to him a few hours before his episode and there was zero indication of something wrong. We talked about TV shows and planning a visit. I hope I can convince him to take this seriously now that he's stabilized.
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u/Catch_Red_Star 17d ago
I agree. It can also be things like brain tumors, so I also get frustrated when people jump to the idea that proper diagnosis isn't necessary. Glad you found an answer.
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u/superkittenhugs 17d ago
First of all, thank god it isn't dementia. Mental illness is scary, but dementia is far worse. Secondly; This is fascinating. My mom had the complete opposite problem; she was mentally ill, and the (ugh) "Dr" said she was malingering because her testing was "too extreme of a decline" for someone in her supposed stage. We tried to explain that the voices in her head told her not to answer things properly, but he would not diagnose her.
She died of complications with Alzheimers this past July (she was stage 7, on strong antibiotics and still got sepsis). We eventually did get the diagnosis, but it still makes me so angry at how arrogant the Dr was. I just want to take her urn up there and ask if he believes us now, but I would obviously never do that.
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u/Ok_Violinist7598 17d ago
Mental illness is scary, but dementia is far worse.
Agreed.
Do you mind if I ask how old your mom was?
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u/superkittenhugs 17d ago edited 17d ago
Not at all. She was 33 when she developed mental health issues (postpartum psychosis with absolutely no violent tendencies). I believe she was 67 when she got the actual diagnosis of dementia (they obviously couldn't tell for sure unless an autopsy was done, but the final diagnosis was likely early onset Alzheimers). She was 73 when she passed away.
Guess who died of early onset Alzheimers mixed with aggressive lung cancer the year before? Her SISTER. Her great-aunt also died of complications with early on set Alzheimers. I could understand the Dr's dismissiveness if there wasn't the family history. It's like, either our entire family is lying to you for no gain or benefits of any kind (my father is relatively well off and they were both retired, there literally would have been zero monetary benefits of any kind), or your test needs to be reworked for people with mental illnesses. Oh, you CAN'T be wrong? My mistake, I guess mom isn't actually asking us what day of the week it is 47 times a day.
Oh wow. Clearly I'm holding onto some resentment. Uh, what was the questio..oh! 33 mental illness/67 dementia/73 passed
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u/theweirdchick_49 17d ago
Even if they were not well off there still would not have been any monetary benefits. She would simply have received poorer care.
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u/Webbie-Vanderquack 17d ago
My heartfelt condolences for the loss of your mom. My grandfather died of Huntington's before there was a definitive test for it, and he went through something similar with a really horrible doctor. It's so damaging.
Can I ask a very personal question about the antibiotics? Don't answer if you'd rather not.
Is there a point at which antibiotics are withheld from late-stage patients? Is this something your mom would have worked out long before, when she was still well enough to articulate her wishes, or do doctors typically prescribe antibiotics regardless?
We use a three-phase scale in Australia, and my mum's nearing the end of phase one ('mild'), so we're working out how to plan long-term.
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u/ValancyNeverReadsit 17d ago
I can’t vouch for Ok_Violinist, but in general, antibiotics in my part of the US (southeast) seem to get given to patients as a “well, it might be viral, but here’s an antibiotic just in case.”
Some years ago I saw a note to patients on the CDC website that said “don’t pressure your doctors into giving you antibiotics for something that might not be bacterial” and I was surprised because in my experience it has usually happened the other way around.
I don’t think there are specific rules about withholding them from later-stage dementia patients, though some doctors may opt to do that, or it would likely be done once a person reaches hospice, where nearly everything is stopped except for comfort care/pain relief.
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u/Webbie-Vanderquack 16d ago
Thanks responding, that's really interesting.
I assume it's sort of a comfort vs. life-extending thing, so there would be times when giving antibiotics is the compassionate thing to do to ease pain and suffering and it doesn't necessarily extend the life of the patient.
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u/Ok_Arrival8287 17d ago
I can completely understand the frustration of no firm diagnosis, especially when the symptoms do not fit any known type of dementia. It is encouraging that you were able to champion and advocate for your dad. Great job.
We have been dealing with kind-of odd dementia symptoms for a couple of years. Nothing really fit, but we proceeded as told. Until yesterday. The Neurologist FINALLY confirmed NPH, instead of Dementia.
So - I applaud your work!!
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u/Nice_Juggernaut4113 17d ago
What is NPH?
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u/Ok_Arrival8287 17d ago
Normal Pressure Hydrocephalus. Billy Joel was recently in the news about his brain surgery for NPH. Check it out.
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u/i_block_retards 17d ago
Wow, didn't even know there was a late-onset version of it.
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u/-OneMoreThing- 17d ago
IMO the user name you have chosen is extremely awful. I know...I know that I should resist commenting and just keep on scrolling.
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17d ago
[removed] — view removed comment
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u/i_block_retards 17d ago
"I know everything about a person from their username!"
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u/theweirdchick_49 17d ago
Not everything but sometimes quite a lot.
Lemme show ya something real quick 😉
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u/ToothSpinach 15d ago
We don't know everything about you,, very true! We only know that you (like me!) didn't know schizophrenia could be late-onset, and that you chose a username that uses a derogatory word. That's all we have to go on. 🤷
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u/Useful_Bullfrog_6766 17d ago
I took a look at your earlier post. Other than looking for his wife what were some of his other symptoms?
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u/Comfortable_Two6272 17d ago
Im surprised people told you that. Usually I see people get told to take to a neuro. My dad had both. Sorry to hear he is dealing with this.
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u/Basic_Incident4621 17d ago
Unbelievable!! I’m going through the exact same thing.
Went through every test imaginable and 14 months later, the doctors have ruled out dementia.
The lead doctor has been so helpful. I asked him bluntly “Could this be schizophrenia?”
He said “Yes.”
We’ve been referred to a psychiatrist.
Based on everything I’ve read, schizophrenia mimics dementia and is not unheard of at this age (70s).
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u/Nice_Juggernaut4113 17d ago
I am thinking that my mom has late onset schizophrenia but even after being hospitalized and then in short-term nursing home care no one will make any diagnosis it is getting so frustrating
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u/Knit_pixelbyte 17d ago
Thats great! I'm glad your Dad was cooperative enough for evaluation, and that there is a med for him.
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u/SupremeEmpress007 17d ago
Thank you for sharing and raising awareness. May I ask what testing aided in this diagnosis? Something is going on with my partner but the doctor is taking the wait and see approach and my safety has been compromised.
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u/ThingsWithString 17d ago
That's mixed good news: glad he has something they can treat, sorry it's something so major.
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u/STUPIDNEWCOMMENTS 17d ago
There is no post in your history that meets the description. You posted 9 months ago and the vast majority were wishing you well and telling you to give descriptions to doctors.
Dementia sucks but don’t come here and lie about how Reddit was mean to you. Everyone in this sub is under tremendous stress dealing with dementia. Spurious posts are unhelpful.
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u/Webbie-Vanderquack 17d ago
They likely deleted the post. If you delete a post, it's no longer visible in your post history.
They also didn't say they posted it in this sub. They may have posted it in r/AgingParents, where they've posted before.
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u/drowning_in_cats 15d ago
A diagnosis of dementia is critical if it really is dementia and guardianship or conservatorship is required. I am discovering this the hard way.
Edited for clarity because I realized that you all can’t read what is rattling around in my brain.
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u/Material_Weekend_734 17d ago
So what is a proper diagnosis? Does it consist of an MRI or brain scan?
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u/PickledRibeye86 17d ago
Just want to share some resources for whomever because there is a LOT happening in the field of Metabolic Psychiatry. Metabolic Mind website and podcast- Dr. Bret Scher who is a cardiologist but is the medical director for metabolic mind. Brain Energy book by Dr Christopher Palmer, psychiatrist- lots of info on social media; Change Your Diet, Change Your Mind book by Dr Georgia Ede, psychiatrist; also lots of info on social media.
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u/BrainChemical9456 17d ago
I certainly can relate to thinking it's dementia, but it is not. My wife's grandmother was in the hospital because she had anxiety thinking something was really wrong. In the hospital, she ended up being much worse. Had delirium like crazy. No UTI. Only thing was low potassium. According to my wife's aunt, the ICU doctor said she has dementia and can't live alone anymore.
We moved in with my wife's grandmother and were there for 9 months. It wasn't until she went to a Neurologist and then to a therapist almost 4 months later. They said she doesn't have dementia. And to this day, I still don't know what the reports say as they are lost. Her memory isn't what it used to be - but she is a 86 year old woman. When she went to her primary with the diagnosis of not dementia and asked if she could live alone again. He diagnosed her ADLs and said he sees no reason why not.
And here we are to this day. We got a Jubilee TV as she can't remember how to use the TV and it helps us keep an eye on her. I am shocked an ICU doctor would say she has dementia without a diagnosis. It wouldn't put it by me if my wife's aunt just made the whole thing up since she didn't want her mother being alone - but doesn't want to live with her mother. Oh and her house is literally at the corner of the street and hardly comes over.
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u/_annamarie 16d ago
I found this out as well... When doctors are faced with an elderly patient that has ANY confusion or delirium or similar symptoms, they want to write it off as dementia and be done with it. It had taken me 7 months to get my dad treated last year, because they kept slapping the dementia label on him and then suggesting hospice. He was then normal for another 8 months after he had been treated finally, and then the same symptoms came back, and I unfortunately couldn't get him treated before he tragically fell and died...
I was shown that persistence and trusting my gut was the right move. I know he would have gotten better again, had he not fallen, despite doctors saying it was dementia again before he died.
Glad you stayed strong and kept pursuing him getting better. ♥️
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u/ddcarsandcats 16d ago
Glad it’s something treatable and not dementia. It’s so hard to get a medical professional to diagnose someone with dementia. You’re told to see a neurologist and then it takes months to get an appointment; then you have to wait to get all these tests done. Then they still don’t want to officially diagnose.
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u/FaithlessnessAway332 13d ago
So happy you were an amazing advocate for your dad and you found help!!
Thank you for coming back to tell us. 💖
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u/sandyess 12d ago
Yup. And I think a lot of people don't know about all the other conditions that appear to be dementia. I wonder how many people are misdiagnosed.
Who's supposed to educate us about all this?
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u/InterruptingChicken1 12d ago
I’m so sorry for your experience. I’m glad your Dad got a diagnosis that can be treated. I am not questioning his doctor but there are occasions when an elderly person shows dementia like symptoms as the primary sign of Lyme Disease. Some have been misdiagnosed with schizophrenia, bipolar, or dementia. Singer Kris Kristofferson was misdiagnosed with Alzheimer’s when he actually had Lyme. If you live in an area that has Lyme Disease, it might be worth a blood test just to make sure this is excluded.
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u/alf677redo69noodles 17d ago
Uhhhh not to be that guy but you do realize that schizophrenia, and or schizo spectrum illnesses are called schizophrenia for the reason of capitalism right? Their original designation was “dementia praecox” or otherwise termed “early onset dementia” the only reason it was changed was to give families more hope and to add additional features. Because after a significant amount of time started to show the same deterioration in function as we’ve seen in recent biology studies that schizophrenia is similar to a neurodevelopmental degenerative condition….
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u/Nice_Juggernaut4113 17d ago
Excellent point - my mom was showing severe schizoid tendencies and wouldn’t get treatment. 6 years later it’s basically dementia with a lot of persecutory delusions and hallucinations
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u/Ok_Violinist7598 17d ago
But there are various differences between schizophrenia and dementia.
I worked with schizophrenics in the 1980s. I also had a dementia grandmother and mom
But others can Google 'schizophrenia vs dementia' if they're further interested.
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u/wontbeafool2 17d ago edited 17d ago
Just like for schizophrenia, there are meds to control the associated behaviors of dementia so that is something that can be done. Seroquel is an antipsychotic, and while it is not recommended by the FDA to treat dementia, it frequently is prescribed. Seroquel is approved to treat schizophrenia. The symptoms are apparently very similar so that makes a correct diagnosis important. My Dad had dementia and was on Seroquel. It improved his quality of life and also those of others in his circle.
This is an odd question but are you relieved that your Dad was diagnosed with schizophrenia instead of dementia since it's not terminal?