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Looking back, knowing what you know now about Dementia and your LO, if you could go back in time and eagle eye watch for the tiniest sign that cognitive function was beginning to decline, what incident or event would you pick up on as that tiniest sign?
For us, I think it would be her absolute inability to stop herself from bringing a painful subject (and her ridiculous opinions about it) into EVERY conversation. Not just some or most. Every conversation, no matter the topic. Despite being asked not to, despite it being demanded that she not, despite people getting to the point of refusing to speak to her at all because of it. Every conversation, without fail. That started probably 20 or so years ago.
I can think of some others as well, but this one is the most prominent.

For my now 95-yr old Mom, it was within the last 7 years. She was still driving and one day confessed to me that she went to an area she wasn't familiar with but was eventually able to get home. Didn't think to call me. Nothing odd happened for a long while after that (like maybe 2-ish years). Then one morning she called me up and wanted to know how much toothpaste she should put on her toothbrush. A totally weird question. I was so dumbfounded I just gave her an answer. She sounded confused. I wondered if she'd had a TIA. Then, about a year or so passed and she became more and more forgetful and easily confused. Made more mistakes cooking even when following a recipe. Would shop for me at the grocery store from my list, and still bring back the wrong items or brand. Became more insistent that someone did her wrong, rather than acknowlege she made a mistake; became tonedeaf in conversations and not relenting when told she'd crossed a line, less empathy, more paranoia about people taking things or me wanting to "put her away in a home"; was forgeting how to use her appliances but insisting they were broken and torturing the customer service phone reps; worsening judgment (like trying to walk down her snowy driveway in sneakers when she has boots with cleats); repeating herself; incessantly asking inane questions until I have to tell her to stop; broken filter; negativity; inappropriate social behaviors; etc.

It starts very slowly and spotty. By time we see more regular and unmistakeable behaviors, our LO is already in moderate dementia.
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mommabeans Dec 30, 2024
Yes, a mom's rent was on auto pay and she would then also log into the system and pay it. And would swear up and down she didn't do it. Even with the proof in front of her face. She was convinced the management was trying to steal money from her. And also, the tone-deafness. Phones and computers that got replaced because they "didn't work" but they were just turned off or unplugged. Social behaviors I would say got oddly "extra". Not really inappropriate just dramatic. Like the worst acting job ever...
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Person A: Anger, paranoia and hallucinations. Person B: Anger, paranoia, and forgetting things, plus making really bad decisions about everyday matters. Person C: Falling a lot and thinking she was going to marry Elvis. Person D: Unable to complete tasks that required following simple instructions. Person E: Didn't recall that she'd sold a house she'd inherited from her mother. Person F: Thought everybody important in her life was stealing from her and wrote letters about it to all of them as well as the police. Person G: Lying about things, such as saying family members stole money from parents and put their dad in hospice without his permission. Person H: Started talking about digging up his parents (dead for more than 30 years) and building a huge mausoleum for them in a cemetery in a town 20 miles away.
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We were amazingly blessed that my mom maintained her sweet demeanor during 90% of her dementia diagnosis before she passed away. Her initial symptoms included unusual, repetitive questions, along with forgetting recent events. What exasperated her symptoms was when she and my Pop had to isolate because of Covid. Even though my mom had been diagnosed with dementia in 2019, she continued to play tennis on a competitive team. This came to an abrupt halt in March 2020. I mention this simply because isolation played a key role in the progression of my mom's diagnosis.

I moved in with my folks to be their caregiver, so I was able to spend the last two years of my mom's life with her.

Last year, when I mentioned some concern about having early signs of dementia, a physical therapist told me that forgetting where you put the scissors is not a sign of dementia. If you forget what scissors are for then it is worth discussing with a doctor.

This has been a very helpful barometer. ❤️
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kstay10 Dec 30, 2024
The lockdown played a huge role in my mom's progression as well.
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I think it was my DHs inability to balance his checkbook. He had always been an obsessive financial record keeper - hole punches, three ring binders with business cards taped inside, the whole bit. Suddenly (or maybe not so suddenly?) he couldn’t reconcile at the end of the month. Once I started doing it for him I started to see he was sending donations to national organizations over and over again, forgetting that he’d done it the month before. He would get mad at me for pointing it out. Then he admitted that he was afraid if he didn’t send a check when asked something bad was going to happen although he couldn’t say what.
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I cannot pinpoint when 50 years of narcissistic traits turned into dementia behaviour. The mental gymnastics for her conspiracy theories were alarming. Example: newspapers and broadcasts were lying about the date. If they said today is Saturday, Dec. 28, 2024, she would go on for hours at a time about how she was going to publicly expose their lies to reveal the truth. She just needed to find an outlet brave enough to help her publicize her findings. She was going to expose so many people for such a variety of misdeeds. She insisted I was selfishly withholding treats from her which were actually inedible items, an example being dishwasher pods.

She’d always been obsessed with ways she’d been wronged, so again, it was tough to determine a specific time.
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LSUPixie Dec 30, 2024
My mom also has always been obsessed with how she was wronged or slighted by someone either in the family, the church, strangers. The story always ended with her giving them a piece of her mind, telling them off and being the hero in her own mind. That never happened but that's how she told every story of every encounter even pre-dementia. I just thought it was her thing, she exaggerated EVERYTHING. She also has been a hypochondriac her entire life, any cold or flu that went around, she was sure she had it and had to go to the doctor or self-medicate. If anyone had something, she had it worse. That trait became worse over the years and possibly so with the beginning of dementia.
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The first signs about two years before diagnosis, were my husband's work issues. The department had added some extra computer tasks to complete when writing patient notes. He really complained about this. I told him "you're a really smart guy, you can do this." I was surprised at the time how much he pushed back against this, claiming that this was just extra busy work for him and that the program was flawed. It got to the point where he was called into several department meetings to sort this out, including a Zoom meeting I was to be part of. I think the hospital wanted to see how I was dealing with what was going on at the time. So, a few months later my husband was given extra vacation time. During which one night he woke me up, saying he was seeing vapor trails. Ok-I drove us to the ER. MRI that day confirmed Frontal Temporal Dementia. He's a doctor. He knows exactly what he has.
So, it's been over five years since the diagnosis. He's gradually slipping away. Really hard to watch.
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graygrammie Dec 29, 2024
Oh my, I can't think of anything worse than being a doctor and knowing exactly what your future is going to look like, except being the wife of a doctor and knowing what the future is going to look like. My heart goes out to you.
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Year 6 Lewy Body..first signs was mom could not write a check, and she could not take pills correctly from the bottles and fill her pill box…then one day she told me she went outside and tried to walk on the iced up driveway after an ice storm {a downhill slanted driveway to the street}, to see how icy it was outdoors! This was after she already had a hip break/fix. She also did not know how to use a tv remote. This started probably 2 years prior to her diagnosis..mom is physically well but needs nursing home care for incontinence {bathrooms in wrong places}, unsafe to be unsupervised even for a few minutes, at risk to start fires, runs away from home, wears her underwear on the outside of her clothes etc. she is calm and content now. Walks well and enjoys the company of others her age. Sad disease.
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BlueHeron 17 hours ago
Hi Roanoke! I'm also in VA - near Fredericksburg.
Does your mom have tremors or Parkinsons-type symptoms? Just curious. My mom was diagnosed as having "some type of dementia", but it doesn't seem to be Alzheimer’s because her memory is pretty good 10 years into it. She refuses any more tests, and I don't blame her, so we aren't pushing it. But if I had to guess, being a big Google expert (haha), I'd say she has a mix of vascular and Lewy. Delusions and hallucinations galore, but no tremors or stiff limbs. It's a sad puzzle.
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Losing nouns. “You know, that thing,” rather than the name of the object.

It was progressive, as we all know, but the element that made it impossible to deny was when she started putting her hearing aid batteries in her ear, rather than in the hearing aids.

Even though I had seen it all progress over years, and knew what was happening, other family members - with only occasional calls and visits rather than regular weekly visits and frequent calls - still could not see the signs until it became extreme.

At the point where I was taking her to the doctor to get hearing aid batteries taken out of her ear canal, shutting off the breaker to the stove, and disabling her car, I still had my sibling telling me nonsense like “Oh, she’s just bored and lonely.”

Yet, years earlier, my mother could not see the signs of dementia in my father. Spotting the signs seems to take regular contact, but not *constant* contact. She couldn’t see the signs in him because to her it was too gradual from her perspective. Others couldn’t see the signs in her because their contact was too limited and irregular to see the steady steps of decline.
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mommabeans Dec 30, 2024
My cousin, who rarely visited or talked to my mother for decades, has told me that my mother seems fine enough that SHE feels MY mother could have gone back home to live by herself. Nevermind that my mother has no idea who she is. Doesn't remember her name. Thinks she's the "farmer's daughter." "My brother's daughter?" "My brother had a daughter?" "I have a brother?" But, she's fine to live alone? Fine, take her out of the AL and take her to your house then. When she's burning your house down and breaking your things to throw them away because "they're broken" because she doesn't know how to turn it on, then you can take her back the AL yourself.
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I recall my mom making decisions she definitely would not have made before. The biggest thing that sticks out is when she told me she was being followed. Then whenever we went somewhere, she would say there they are or that person is following me too. She claimed people were outside her apartment at night, talking to her. I immediately had a family meeting! From there, she would get lost driving so my dad went with her everywhere. There is more.
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Timely topic for me because I was talking about the same thing with my daughters two days ago.

I said that I thought I was seeing it in my husband in the early 2000s. There were quick moments of confusion about time and place. The doctor said he was having Transient Eschemic Attacks (TIAs), so that's how the strange episodes were explained. In 2002, we gifted our daughter and her husband the lot next door to us, they built a house and moved in early spring 2003. In 2004, I found him staring out the window at their house and he said to me, "Why is there a house on our lot? Who put it there? Who lives there?" I'm not sure that was a TIA. By 2013 I was sure he had something psychological going on. He was diagnosed with dementia (frontotemporal and mild cognitive impairment) in 2017.

My oldest daughter said she now thinks she saw things in the late 1990s (there is too much history to go into right now). In her eyes, she believes her father (a pastor who had an affair that ended in 1995 but it wasn't revealed until 2017) was given over to a "seared conscience" or "reprobate mind" and that the things he started saying/doing/teaching back then could have been the beginnings of dementia.

My other daughter said she looks back and realizes that he was always a little bit "off" but just attributed it to his personality as it was his "normal" way of behaving. In public, he had to be the funny guy and the star of the show and everyone's best friend, but at home he was sharp, criticial, controlling, and nasty. She recalled me saying to him once, "Why don't you pretend we are your church people and treat us the same way you treat them?"

So, is it possible that my husband was showtiming even in the 90s, or do we just attribute it to personality? I guess that is a question we'll never know the answer to for certain.
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Anabanana Dec 29, 2024
My husband’s father - also a pastor - was the same. I always wished my mother would treat me the way she treated others - she was the ultimate church lady. The more I research, the more I believe she exhibits covert narc traits. (FIL is very overt) My cousins think my mother is the greatest, kindest, most thoughtful and supportive aunt in the world. While she had zero empathy for me. Narcissism and dementia are a messy inseparable mix.
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