Early behaviors, pre diagnosis behaviors

Alzwife, I'm sorry the journey to here has been so hard. I'm sure you did the best you could with what you knew at the time. I'm so glad you found this site. There are so many folks who are helpful and experienced. It's nice that each newbie that comes along doesn't have to reinvent the wheel. (Unfortunately there's not much of this kind of advice from the docs.)

I found this provider's quick do's and don't very helpful.

https://www.youtube.com/shorts/AqV2W9X8gXM

very earliest symptoms are sometimes only recognizable in retrospect. I first noticed my partners problems in about 2012 or 13, with definite symptoms by 2014. However, she built our house in 2007-08, and struggled with making some design decisions then. I chalked it up to building for herself and being in the dual role of client and builder and just being unsure about what she wanted. But her trim carpenter, who is a close friend, later told me that she would ask him for opinions on things that he really thought she should have known. So it sounds like she was starting to lose things even 5 years before it became fully evident to me.

@AlzWife2023

I was the daughter in this scenario. Mom was the frog in the warm pot of water set on the stove. She was too close to the situation to see the changes in dad much less put them all together. She also never had the benefit of seeing dad without her scaffolding him like a sherpa through tasks.

What you are describing sounds so familiar to me. I noticed a change in dad's persona as early as the summer of 2005. He took a real turn to the dark side. Dad and I never really got along so I was familiar with this, but mom, other family members and friends were on the receiving end now. I think this was a result of his loss of social filter; previously he could control how he presented to others and now it slipped. In 1999, my parents were suddenly dropped by the in crowd at the club and chose to move 200 miles away in retirement. Things were find there for a couple of years before they found themselves not included, so they bought a place in FL in 2003 and started spending at least half the year there.

By 2006, even close relatives were avoiding visits. I would visit them at the golf course place 4-5 times over the summer for a quick weekend and fly down to FL once each year to keep an eye on things and see mom. Around this time, he started to conflate family history which I did not fully appreciate as a symptom at the time. He once told my then 13-year-old son that I'd "taken the kids to a bar and went off with some man to have sex and never came back for them and that the bartender had to call him to pick them up at closing time. Some loose version of this did happen to him twice— with his sister and mine— but not me. DS is an only and quickly spotted holes in the story, but still. This felt like rewriting family history to me.

In 2008, I saw the first real lapse of memory when he got lost in what was his old stomping ground. We'd attended a Battle of the Bands at a high school that is directly across the street from his brother's house and less than 1/4 mile from his first business and the house in which his parents lived when dad was a young adult. He was coming from my house, which I bought from him, a mere 10 miles. I was gobsmacked.

I badgered my mom to have dad diagnosed for the better part of a decade. She blew me off with excuses and rationalizations until she almost died when he failed to advocate for her when she was ill. He finally got a diagnosis in September 2016 well into the middle stages.

After he died, mom was finally able to process the impact of his dementia on their lives the last 15 years or so. There were a number of times when she was seriously considering divorce as she was so angry and frustated.

HB

Oh my gosh, SAME SAME SAME to all of this!!! I read somewhere recently that the symptoms can start as early as 10-15 years before diagnosis, and now I am questioning SO many things that we missed with my mom!

@Chug I also thought about it as primarily memory issues, so some of the "weird" behaviors I just chalked up to her just getting, well… weirder as she aged. What finally made me confront it more seriously was when she started having some really inexplicable and severe mood swings. My mom has always been a feisty one, but it was becoming a lot more severe.

The eye opener for me was a situation where she got angry at the person who mows her lawn. I still couldn't tell you what she was upset about, it was that ridiculous and absurd, and her reaction was well out of proportion for whatever it was. She called me SCREAMING about it, and there was absolutely nothing I could say calm her down. This went on for at least an hour. I needed to take a breather from talking to her after that, and when I finally called a week later and asked about it, she had absolutely NO idea what I was talking about. It was truly wild.

I was still in denial for a good year and it took several more episodes before realized something was really wrong. I still feel guilty sometimes for the times I missed and the times I lost my cool with her, but I know we are all just doing the best we can with the limited information that we have.

@AlzWife2023 completely agree. My mom's executive functioning has been largely intact (the neuropsych eval said her scores were actually higher than average), which threw us off for even longer… but when I look back now there are so many small things that now make complete sense. There was enough time between those situations that it was easy to chalk it up to just being weird, but once it started becoming more frequent, it couldn't be ignored anymore.

I feel so bad for my mom - she does the "unintentional gaslighting" all the time, and I know she's just trying so very hard to appear like nothing is wrong. When I drove her to neuro last week, I realized she was practicing our birthdays, I guess in case they quizzed her on that. It makes me sad to think about the amount of energy it takes for her to mask every single day.

I need to read these posts everyday. I experiencing this now. I see the changes in my sister. I'm not a doctor but have lost 4 family members with demintia. I'm pretty dang sure this is what is going on. "Unintentional Gaslighting" is the a great way to describe it. Just hope I don't go nuts.

This is all what I saw with my sister too — although I didn't live with her so didn't see the changes daily, but her work colleagues did.

Things that stood out to me though (in hindsight) - the time when we went wine tasting and she filed her driver's license in with her CDs (yep, this was a while ago). I guess the CDs were flat, the driver's license was flat…. it took us quite some time to find it.

The time she asked me to make meatballs (we're Italian). Mine are not as good as hers, and I told her so, but she said she couldn't really remember how to make them. Red flags appeared.

The time Peggy called me, angry and upset, that her doctor called her "slow." I was upset right along with her. We got her a different doctor. But once she was diagnosed, I understood what her doctor meant by "slow." Still. Really inappropriate.

About 6 years into MCI, she forgot how to make spaghetti sauce. My cousin thought maybe she'd had a stroke. That's when I started mentioning to her that maybe she should talk to her doctor.

7 months before diagnosis she lost her car in San Francisco. She'd been to our apartment there a million times before, and inexplicably she parked in a car lot pretty far away. Took us hours to find it. When she thought it was going to be lost forever she said, "oh well, I guess they're going to tow it and I'll have to buy another car." What???

After Peggy was in memory care, I spoke with her ex-manager. She told me that beginning around 2011 Peggy began having troubles at work. She wouldn't always finish tasks, and she "struggled." Her ex-manager didn't know what to think because Peggy had always been meticulous. But Peggy was also early-onset. During her MCI time at work, she was in her earlier to mid-50s, so no one thought to think about early-onset because she was so young.

I wish everyone who thinks their LOs can still drive would read this post. If we're seeing (in hindsight) dementia behaviors 5-10 year before diagnosis, why would anyone wait for a diagnosis to stop someone from driving? When you start to see problems, which might be late in the game, driving should stop!

I agree that we're not educated on signs of early dementia. We actually may be teaching people to tolerate even later stages.

Here's an example of a well-meaning video from the UK on encouraging "understanding and tolerance" to help a PWD try to lead an independent life and to be "dementia friendly" While it's probably okay to help an early stage/mild cognitive impaired patient, the video, in my opinion, seems to encourage a later stage PWD to lead a life into dangerous situations, rather than to seek help. It's a difficult distinction, in my opinion.

The video, for example encourages viewers to help a PWD board a bus and let them know when to disembark. Sounds nice, but what if the PWD is wandering and truly lost? I actually don't know what the right thing to do when you encounter a confused, potential PWD in public. Perhaps talk to them to ascertain the situation, stay with them and then call the police if appropriate (as this site recommends). Or to just help a confused supermarket shopper with their shopping list, and I presume let them go their own way?

This paper states that word finding difficulty is an early indicator of dementia. It's commonly understood, but this medical paper delves into it. The original reference is from this magazine article which is easier to read.

@dancsfo

The UK's dementia culture is a bit different than it is here. Their messaging of late is about respect, inclusion and independence supported by the community which sounds like some kind of kumbaya utopia on the surface. But I suspect this is driven by the cultural expectation that care is the responsibility of the NHS which is struggling at the moment. I've seen a number of videos from the UK encouraging families to consider care at home but as if the thought had never crossed their minds. I'm not sure what, if any, assistance is available to caregivers who opt to keep their LOs at home.

HB