Early Onset Alzheimers - before diagnosis

lazymom05 · May 12

I would love to see how many of us has 'horrible' years leading up to the unveiling of the diagnosis. The two years prior were full of arguments / fights / resentment. I look back and I cringe now that I can associate all of those times to his EOAD symptoms. I wonder how many marriages crumbled before diagnosis and the LO is all on their own. It breaks my heart seeing how close I was. Now I am more in love with him seeing how hard he fought it before being ' discovered'. He was finding it emasculating so he was fighting hard to 'cover it up'. Since the diagnosis he is now the sweetest / most loving / kindest / accommodating partner.

Ed's mom · May 12

We have come very close to me leaving a few times in the last 3 years. But 44 years ago I made a promise I intend to keep. We don't have a definite diagnosis, our PCP is also a friend and they share denial. Testing in 6 weeks and hopefully an end to the wondering on her part. We all know who have lived with her. I stay but we were part of a community for 6 years that dissolved. A large part was my LO being disagreeable, angry and argumentative. We would start the day betting how long until she was screaming at me about something I did wrong. Joining this group was a lifesaver for me. I understand. It's not easier, I still resent it a lot. But I no longer argue, I just take the blame and move on. It has been a game changer. The best people are here, I don't feel alone anymore. And they know. They know! No judgement, no shoulds, a lot of grace and kindness. A new word we have agreed fits, anosognosia and a new motto to repeat like a mantra, "you can't reason with someone who's reasoner is broken".

I'll stay, not only because I promised but she's sick, not being an Ahole. Now I can usually just accept and shrug although I do forget sometimes and suddenly find myself in an argument I don't know the topic of. But now I can say stop and just move on. Most of the time.

You ask an interesting question, especially as promises suddenly become a reality you hadn't imagined. I look forward to others responding.

jen ht · May 13

I think this is why my parents divorced.

As I was working to untangle dad's finances due to scammers (several years post divorce), I wondered if unknown / pre-Alz diagnosis brain change lead to her frustrations with him and thus to their divorce as well.

Then we reached crisis mode and I had to find a memory care for him quickly. While visiting senior living communities, I was processing aloud about an intense encounter between my folks a few years back. The woman helping me at that time had walked this journey with her own dad and later began working to help families of people with dementia. Anyway, she gently suggested to me that intense encounter (which became a breaking point for mom) was likely one example of the start of dad's Alzheimer's and an example of earlier brain change behavior.

It's so sad for me to see this breadcrumb trail now.

Maybe it's just the story I'm telling myself. Who knows. I barely understand my own marriage, let alone trying to understand someone else's. 😉

I am so glad you posted this. It has helped me to process this and share here. Thank you.

May we be well 💜

jht

blacksparky · May 13

When we marry we all repeated the words to have and to hold in sickness and health. I’ll wager none of us ever even gave it a thought at the time that we would end up here in the site supporting our LO in sickness and death. I applaud all of the spouses that have committed to what they promised so many years ago.

beachwalker5 · May 13

This experience has also made me wonder how many long term marriages break up when one senior spouse develops dementia symptoms and the other spouse thinks the crazy new behaviors are intentional and that the marriage is just heading towards the rocks. I am finding it so challenging these days to NOT take the occasional angry ugly behavior of my DW towards me personally. She often blames me for all of her memory and cognitive issues, particularly her lost of independence because of no longer driving. It's weird to be married to someone who was always so loving and supportive and happy to suddenly be so miserable, angry and totally non empathetic at times. Our LO's have no more idea what we're going through anymore than they know about their own condition and behaviors and overall mental health. What a challenge we all share. Sending best wishes and "keep calm and carry on" to my fellow travelers here.

Leesee · May 13

Looking back, my DH was in his mid-fifties when MCI began. We had to close our business and we were financially recked.

Rather than find a job, he decided we should file for bankruptcy. He refused to look for work or help us financially in any way. Both of us are professionals with Master's degrees and I found myself crying on my way to work one day because I used my last $6 to put gas in my care so I could go to work.

He was awful to me during this time and lashed out verbally on a regular basis. He wouldn't help around the house. I continued to work full-time, cook, clean, shop etc.…I told him if he didn't shape up I was going to divorce him. His response was "I hope you're kidding." He was so unemotional and he just didn't understand how bad things had gotten. Truthfully the only reason I didn't divorce him was because we were too broke!

It took me almost 10 years to realize something was very wrong with him. He was diagnosed with ALZ + VD 4 years ago. He is 71 now and the changes are dramatic. He can dress himself, but I have to lay out his clothes. He can feed himself, but I have to put the food in front of him. He speaks strings of words that don't make sense.

He has become more docile and much kinder, but his delusions can get him riled up. Sometimes I wish I had figured out what was going on much earlier; other times I'm glad I've only had 4 years of knowing.

suvi · May 13

In the few years leading up to my DH’s diagnosis (EOAD and logopenic aphasia), I noticed he was sort of remote. He’d sit at the dinner table and not say much. Our kids were in high school and talked a lot about things like gaming, music, and anime, etc., and I thought he was just not able to connect with that. He was checked out, which was not like him at all. He also started getting anxious about speaking at conferences, something that he had enjoyed. I was fooled by his small talk with people and didn’t realize that conversations were becoming a problem. So, no major personality changes, but kind of a flatness and uneasiness and I felt a distance had developed that concerned me enough to bring it up. He didn’t really have any awareness. Then the memory problems and confusion rolled in along with his language struggles.

djackson · May 13

My DH was diagnosed with EOAD 4 years ago after being fired from his job as a CPA. We had many years of struggles beforehand, and we were even separated for a few months. So, yes, I came very close to divorcing him. He is now very calm, is appreciative of me and accepts that he is totally dependent on me.

persevere · May 13

My DW had her own very successful real estate business. A few years before her diagnosis she just seemed to lose interest. Then, I began noticing how she was mishandling things in her business. Her books were a total wreck. It never really dawned on me what was happening. I would get so upset with her. The disease is so cruel in so many ways. When you learn what was happening it’s too late to apologize.

mbald · May 14

My DH was diagnosed with EO just over a year ago at 57. We were fighting a lot prior to and decided we couldn’t live like this. His cancer came back so we put the issue on the back burner which didn’t last long after his cancer surgery. He was originally diagnosed with chemo brain. It was a challenging couple years and his sister was horrified at how he treated me. The diagnosis made a lot of sense to us given his symptoms. It’s an awful disease.

CindyBum · May 14

Yep. The 2-3 years leading up to my realizing what was going on were incredibly difficult for us. Now I know why.

howhale · May 14

My DW showed signs of something wrong a couple years at least before I broached the subject of seeing the doctor about her symptoms. Looking back (I lost her in August 2025) now I am sure there were signs even earlier. I suspect many, if not most, see signs in hindsight but most of us are not well educated about this horrible disease and missed the very early indicators. Yes, those years before the MCI diagnosis were very difficult as I came to realize what I was seeing and began to try to encourage steps to help. She had anosognosia from the start and it never went away. Those early years were quite difficult as many here have said. The years after diagnosis were even more difficult as she rejected the diagnosis, any medication to help and believed everyone was against her and thought she was "crazy" (her word not mine). This site helped me also to survive. As the disease comes out of the shadows with more and more celebrities speaking about it and the never ending television ads for new medications, I just wish the medical community were better educated about how to help us sooner to recognize the condition. And now, looking back, I see that no matter how hard it was that I am glad I fulfilled my promise to her to stand beside her until the end, holding her hand at her last breath in her own bed. As others have said also, I made a promise 57+ years ago and I damn well intended to keep it as I know she would have for me. I hate the disease but now I am happy that I got those years with her and only wish they continued but with her well again.

elainechem · May 14

My hubby died from EOAD. In 2023, my sister-in-law divorced my older brother. His stepdaughter told me a year later that my brother was having significant memory issues. I'm pretty sure that ex-SIL saw the signs and bailed on him. She knew what I went through and wanted no part of it. Nice. Meanwhile, my brother has been living alone and struggling. He doesn't have a dementia diagnosis that I'm aware of, so I can't legally help him. He lives in another state. He has anosognosia big time.

Goodlife2025 · May 15

The year before we started seeking medical explanations was the worse. Everyday starting out fine and then dissolving into a fight by the evening. Me, often wondering what just happened and never really understanding why. But now we know……

harshedbuzz · May 15

@lazymom05

I think what you experienced is more common than we know.

Dementia is so much more than memory loss. Early in the disease process, well before memory issues are apparent, losses around empathy, poor executive function, increasing apathy and loss of social filter can damage even the most loving partnerships.

I witnessed this with my own parents. I picked up on changes in dad's mood and social filter as early as 2005. He and I never enjoyed an easy relationship, but he and mom were devoted to one another, and he had many friends. Around this time, he started to burn through their social circle first in PA and then MD and FL. Mom kept agreeing to move to offer him a fresh start. By 2008, I saw obvious memory issues, but mom pushed back on actually getting him even screened. She was talking about divorce at that point. When he was finally diagnosed in 2016 after she almost died with him as her medical advocate and then him having a psychotic episode that landed him in the hospital where he was diagnosed.

When we had the initial meeting with the CELA mom was still somewhat in denial that the behavior was disease-driven and wanted to explore divorce. When the CELA laid out the financial realities of divorce and understood that she would lose any say in his care (I would have been his guardian), she decided against it. It was a gamble and things between them were pretty awful through stage 6 although once she understood dementia, she was able to detach from it emotionally. In stage 7, his personality changed and he became very sweet natured.

HB

Early Onset Alzheimers - before diagnosis

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