Early behaviors, pre diagnosis behaviors
I keep thinking about DH’s weird behaviors that took place 5-7 years before diagnosis that caused so many fights and so much frustration, anger, and unhappiness for me which seem, in retrospect, to have been dementia symptoms.
Here’s a partial list:
Obsessions: no matter how many times we’d talk about a project around the house like buying a generator or fixing the driveway he’d bring it up every day and act like it was an emergency. When I finally researched and purchased a gas generator & paid an electrician to install a hookup, once the generator arrived, my husband seemed to have forgotten about it & left the generator sitting in the box for six months. Once he set it up it didn’t work. It was too late to return it. I was so mad & exhausted.
Then he’d run the engine everyday for maintenance eventhough it was not making electricity, just fumes. We fought about this so much for so long. It was really painful. I wanted to leave him. I hated him. I couldn’t believe how stupid and stubborn he was being. Was he always like this? I convinced myself he was & these personality traits were being accentuated by his age. I now think he must have forgotten everything every day and was starting from scratch every day with the generator; and even when he ran it he did not understand that what he was doing did not make sense. This was in 2020.
He did the same rigamarole with an inflatable hot tub we had that had an air leak, but this was after I knew he had dementia. He’d clean it, inflate it —spend all day doing this & the next day it would lose air, and he’d start all over again. Once I pounded the idea into his head that it was broken, he became adamant that the company should repair it. I had to lie and tell him that I returned it to the company, but I really took it to the dump. This was in 2023.
Now, he doesn’t have the attention span or interest, it seems, to get this involved, which is a relief but also a sign of progression, I think.
I was in denial for so long. I was so confused. It was my daughter who told me I had to accept that he was not OK.
Comments
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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.
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Hi @concerned_sister thanks for slogging thru my typo-ridden post. I posted originally before proofreading, but I edited it just now.
I agree that I’ve learned virtually everything here and virtually nothing from the doctors. I’m so grateful.
It’s been strange realizing how long this disease has affected our lives, so deeply and so long before a diagnosis. At least I know now what to do. I was beyond my wits end before getting on this forum.
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ALZwife, you type like me, so I had no trouble reading it : )
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That’s funny 😆
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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.
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Same retrospect experience for me. In 2017, my SIL found checks for thousands of dollars that weren’t cashed. My spouse still talks about his mother going to get her hair done while the funeral home waited on her to bring clothing for his dad.
Maybe it was MIL’s basic personality but in retrospect, these seem to be examples of loss of executive function.
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Can I join "the generator causes fights club"? We have two generators that don't work because even 10 years ago DH could not figure out how to fix them, which I didn't realize at the time, turns out he was putting the repairs off because he couldn't figure it out. We would have 3 generators but I made him return the last one he bought several years ago because it would have met the same fate as the other ones.
I have notes in my phone going back to 2017 about things DH did that were early signs, if I had only known. For example, painting the outside wall with interior paint instead of exterior primer and then being very confused as to what he had done or how he did it. We had fights about everything under the sun. I remember being so angry at him because I was working my butt off and he was watching TV and playing games on-line not helping me at all with the house.
After DH spent $3,000 on a still un-installed water treatment system three years ago I finally figured out there was something significant was going on with his brain that was more than just memory loss. Over the past 3 years I was first returning items behind his back that he ordered for projects that were never going to happen. Now I've gotten smarter and never mention that anything is broken or needs to be purchased. The house is starting to get run down and some day I will have a lot of work to do to get things fixed but for now not mentioning issues is the easier path forward.
I guess I'm trying to say that I was also in denial (extreme denial) for a very, very long time.
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The generator fight club welcomes you! It’s just surreal to think about now.
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Something like this also happened to us. I remember around the time he had begun to have TIA's we were out to dinner and he suddenly seemed to lose the ability to read a menu and choose what he wanted for the meal. That was maybe early 2010's but I remember even prior to that DH taking forever to decide what to eat and when I asked why it was taking so long he told me he read every item and decided which items he didn't want before deciding what he wanted to eat. Serious executive functioning issues right there but I had no idea at the time.
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Yes! It was a string of really bad decisions that started me wondering. A disregard of basic safety, for herself and others. Susceptibility to being influenced- a vitamin pusher, a woman who talked her into paying for things like car repairs and other bills, people who acted like friends but took advantage of her. Some inappropriate things at work. It was easy to blame them on ADHD or maybe post concussion syndrome, but no, it turned out to be Alzheimers. I should have seen it coming but I so hoped it was something else.
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@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.
HB3 -
wow! This is so powerful to hear in retrospect. My youngest son started noticing things really early, too…he would said his dad had “no social skills” and I noticed his sudden loss of table manners. First, he would run to the table before anyone else and start eating while I was still putting food out & no one else was seated. Then he started eating like an animal. He’d always been polite so I was also gobsmacked. I didn’t know what was happening and the corrections or criticism I voiced just threw him into a fit so I was backed into a corner of accepting his new behaviors while growing to hate him.
The whole scaffolding scenario is very true. My daughter was so good and patient with me, because she could see I was wrapped up in the madness, too. She put her foot down in October 2022 & it’s been a real eye opener each day ever since. I quit working, I’m at his emotional beck and call, I do everything in the house and serve him. My oldest son lives with us now to help but honestly he’s on Zoom calls all day & if I collapsed he probably wouldn’t find me until after 6 pm!
I feel like I’m inching toward placement. This can’t go on forever. Don’t think that will be a very easy process, but he lashed out at me today when I was being uncharacteristically impatient & WOW! There’s no room for error.Thank you for sharing your experience. It really helps to not feel so alone!
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@harshedbuzz PS THANK GOD FOR DAUGHTERS!!!❤️❤️❤️
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I know when I thought of dementia in the past I always considered the primary symptom to be memory issues. When my mom was 70 she bought 5 gal of paint so she could paint her 2 story garage. I didn’t know what to think. She had some minor issues remembering appointments, but that didn’t seem like a big deal. I hate to say it took me much to long to realize she needed to be evaluated for dementia. Even now it’s executive functioning and anosognosia not memory that is causing the biggest problems.
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hi @Chug the executive function part definitely threw me off, especially with the anosognosia—it just turned into a fight all the time. Now I'm really good about not challenging him but if I'm really, really tired or really, really stressed…I slip up!
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AlzWife, I wrote a post to you on the Spouse/ Partner board.
Iris
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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.
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What’s annoying is that the literature on Alzheimer’s says they have it for 10-20 years with no symptoms & neuro said the same, but I think it’s more like we’re missing the symptoms or they’re sporadic, or coming on so slowly that we all think our LO is just getting weird and we fight &/or scaffold. PWDs also defend themselves and cover up b/c of anosognosia (or fear) and they “unintentionally gaslight” you (a term my daughter coined) for years!
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@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.
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Hi @Jackie_K that makes me so sad! I really don’t know what goes through DH’s mind, but I know that’s he’s much happier & calmer now that I understand what’s going on & I use a lot of validation and redirecting and try to be “normal” with him so he feels safe and happy and not like a burden. (That’s when I’m not cranky, tired, and stressed.)
He goes through phases. One is where he’s thanking me all the time and telling me how much he loves me constantly. Now he’s in an “I’m normal” phase but his word retrieval is bad. Over the past two days, he could not find the words “liter” or “garbage.”
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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.
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Thank you for sharing your experiences. 🙏 My DH (68) has been showing signs for 3 years, but we don't yet have a diagnosis. When he is having a good day, rested and sweet, he agrees to go to the doctor. But when he hasn't slept well or is overwhelmed,
"Mr Hyde" comes out and he is paranoid and accusing me of fabricating his symptoms for some nefarious purpose. On those days he barely looks at me, slams doors and skulks around. I have to stay strong for my kids. Our son (16) handles it pretty well, is aware something is up with his Dad and avoids triggers. But our daughter (15) who was close to him when she was young, is hurt by his foul moods and detachment. She tells me that "dementia is just an excuse". She is seeing a psychologist for support. I have support too. It's a tough gig - teenagers and early dementia all at once! Thank you all for the helpful advice and details of the early signs...most helpful for our journey. ❤️
Jacqueline5 -
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.
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@Xanthe Hi and welcome. I am sorry for your reason to be here but pleased you found this place.
Dementia sucks, EO dementia sucks on steroids. I am so sorry for you, your DH and for your children.
One caveat to watch is that your DD's psychologist understands that the dynamics of dementia are unlike any other behavioral/relationship issue and that the usual rules do not apply. My dad and I had a difficult relationship pretty much forever. I was old enough that I had a chance to do the work on understanding his underlying mental health issues and compartmentalizing our relationship with firm boundaries. It took me a decade to get dad diagnosed as mom found me on it saying my observations on his worsening behavior were the result of me "just not liking him". It took a medical crisis in which mom almost died as the result of his cognitive impairment to force her hand.
Once dad was diagnosed, he got a free pass to be as rotten an individual as he could muster. It's not fair and it would have been great to have gotten a chance to work through or relationship or get closure. But you don't get that with dementia. Dementia is not an excuse— it is a reason. Ascribing motive to it belies a misunderstanding of the condition.
If the therapist doesn't get that reality, they might not be able to support your daughter in a meaningful manner. When dad was finally diagnosed, I got my mom a psychiatrist and a talk therapist (referral from the psych). The psychiatrist is amazing and a great fit for mom for the most part. The psychologist, on the other hand, was not a good fit. She specialized in women going through divorce and life changes, but she knew squat about dementia and would suggest strategies that included reasoning with dad and her using behavior modification on him. As if.
HB3 -
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!
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The problem is that we are not educated on the signs of early dementia. By "we" I mean even doctors and other professionals who claim to work with older adults. Known signs, such as difficulty in making decisions, difficulty with financial matters, and personality changes are thought to be signs of normal aging or personality traits or marital discord. These and other signs may appear long before memory loss become apparent. All of the signs noted on these posts will never get out to the general public.
Iris
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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.
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Independent life! What a joke!
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@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.
HB2 -
Thanks for referencing the differences in the healthcare systems and the cultural expectations between the UK and US.
It's easy to find UK publications related to dementia on the internet, but I need to be careful since the social services and support systems differ, as you pointed out. There's still plenty of useful info, however, as long as I am careful in evaluating them.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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