When did it start?

MaryMN · February 27

My DH is currently in stage four, early stage five. He was officially diagnosed three years ago. I really began to suspect something was wrong when he began having trouble with electronics, something he used to excel at. Looking back, I realize his personality had begun to change long before that.

What was your first clue that something was amiss? How long between those clues and diagnosis?

beachwalker5 · February 27

First red flag three years ago was when my DW would call me in a frantic state, lost behind the wheel when trying to meet a friend in the next town in an unfamiliar area. I was able to talk her back to the freeway home once I roughly figured out her location by asking questions. These "lost behind the wheel" episodes repeated themselves 8-9 times over several years, never happened close to home or familiar routes, and was worse at night.
She was diagnosed with MCI late last year which I've used as the explanation that she should stop driving for liability reasons.

I'm guessing she's at stage 2-3 with a few stage 4 boxes checked and with quickly progressing short term memory loss over the past few months. She's been exhibiting more dramatic personality changes (occasional "raging bitch" episodes followed by remorse/ her old sweetness). Anosognosia has been a real challenge but I think I'm managing better since I stopped arguing with her and am striving to live in her world when I interact with her. We're all on a very weird and challenging journey here, stay calm and carry on….

H1235 · February 27

Two years before mom was diagnosed she bought a 5 gal bucket of paint so she could paint her two story garage herself. At the time she was 77 years old and on steady on her feet. I managed her pills in a weekly dispenser, but she would not refill the prescriptions when needed. It wasn’t that she would forget, just just put no priority on it. I eventually just started doing it. I was frustrated that she was making such poor decisions, but figured it wasn’t my place to question her priorities. The final staw. She allowed my niece and her three kids to live with her (she only has a two bedroom house and one bedroom was so full you couldn’t even get into the room). She then allowed one of the grandkids to bring a cat into the house. It sprayed. This was no where near normal for mom. She refused to let me in the house because she was so embarrassed by the mess and the smell. She had no memory issues which threw me off. She never got lost. My mil had Alzheimer’s so I thought I knew what dementia looked like. Turns out mom has vascular dementia. Her executive functioning and decision making have been the most effected. Of course anosognosia has also been a nightmare.

jgreen · February 27

Hi @MaryMN

Like you, I had feeling things were “off” long before I admitted that I needed to have DH checked by his primary physician. Little things at first - missing payments, asking if I would like to drive his car if we were going somewhere together. What hit me hard was he forgot his passcode for his phone - his birthday!

I would say it was 8 months from those ‘feelings’ to diagnosis.

blacksparky · February 27

I retired from my long career in the grocery business on March 1st of 2022. My DW had her own business doing medical coding for about 12 doctors remotely. She worked on the computer 8 hours a day inputting codes for the doctors to be paid. She had this business for the past 20 years. We both planned on moving from California to Minnesota after I retired. We bought some acreage and built our dream home in the woods and headed across country to our new forever home. She got her in home office set up there and was in business as usual. That was May 2022. In June that year , I noticed it was taking her 10-12 hours to finish her day that normally used to take 8 hours. In August she came to me and said she couldn’t figure out how to turn on her computer. She forgot where the switch was. We made an appointment with her PCP to figure out what was going on. Since she was 52 at this time, the doctor wrote it off as pre menopause brain fog. I disagreed and got an appt with a neurologist. Scans of her brain showed white matter but Dr said it was normal for her age. I disagreed once more and fought insurance to go to neuro psychologist. She flunked all those tests too and diagnosed with aphasia. Once again I doubted this was it. We then made the decision to go out of network and pay cash and went to Mayo Clinic in Rochester Minnesota. After a week of testing, we got the diagnoses of EOAD. Sorry this was so long. Two things I have been wondering is if we didn’t move across country, (moving is hard on someone with Alzheimer’s and can progress it) would she not be at stage 6 now. And if we didn’t spend our money and stayed in network, would we still not have a diagnoses? We all need to be our LO’s advocate.

countrywife · February 27

I’m married to a farm guy and he would always cobble up any project around the farm that was needed. We bought a ready-built chicken coop and I noticed he struggled to figure out a design to add a run for the birds. When I asked him to build me two new simple 4x6 raised beds, he took the lumber to a friend instead who built them for us. It all came together for me when I was filling out some medical paperwork for him, asking him to answer every question even if I knew the answer. He couldn’t remember his birthdate. After that I was able to think back to other things that were clues I had dismissed or overlooked during the 12-18 mo prior. He just turned 69 when a neuro comfirmed his diagnosis of ALZ. Heart wrenching!

Goodlife2025 · February 28

EOAD age 50 late stage 5/early 6. she was diagnosed in June of 2023 but I have spent a fair amount of time actually looking back and listing any signs that were there earlier and tracking the changes I and her daughter were noticing. In 2014 into 2015 DW (age 38/39) struggled to learn a new spreadsheet program at work. She ended up leaving that job and working from home where she was able to muddle her way through until she was fired in April of 2022. The search was on to figure out what was really happening. We are all different and on such an unpredictable timeline; frankly one of the most frustrating aspects for me. While "they" say early onset especially at her age often goes quicker than the more traditional Alzheimer's; looking back our journey is taking a longer path as we start our 12th year.

SDianeL · February 28

I noticed some things during COVID. My DH couldn’t spell common words or remember how to do tasks. One day I was talking to my daughter about my son who lived in another state. My husband was confused and asked me what was his relationship to my daughter. I realized then that something was wrong and made the first appointment. It took a few months to get the diagnosis and see a Neurologist.

Quilting brings calm · February 28

Mom fell out of a camper and hit a skull fracture in 2013. She used a walker for about 18 months and just seemed ‘foggy’. She improved and seemed normal after that.

She and my step-dad moved out of state in July 2016, to live in their camper. In the spring of 2018, he called and said I needed to make the 12 hour drive right now. She was confused and couldn’t follow conversations. Her PCP told me it’s because she had stopped gabapentin cold turkey. We found out she had cancelled a neurologist appt ( we didn’t know she had a neurologist), got it rescheduled and that doctor told my sister she had had a slight stroke, but would be fine.

She started telling me on the phone that she couldn’t balance her checkbook - needed the bank manager to help etc. In the summer of 2019, she started saying she couldn’t manage living in the camper. So they moved into an apartment in an over 55 community. A week later ( early September 2019), the housekeeper called me to tell me my mom couldn’t fill her pill reminder properly, and was confused. Another emergency trip. Doctor told me she had delirium from a recent hospital stay. Back to work for me. My sister took her turn and came since she wasn’t working.
Two weeks later, mom wandered out of the apartment and to a stranger’s. The police brought her back. My sister had finally gone to a hotel for that night because mom wouldn’t let her get any sleep. Another emergency trip. The doctor told us she had dementia. Mom could hardly walk unassisted, didn’t know how to take a shower, wouldn’t take her pills, slept 15 minutes at a time, and made no sense at all. We were told to put her directly into a nursing home. She was considered to be a stage 6.
We moved her back home and took her straight to our local hospital, urosepsis. A week in the hospital, a month in rehab, then we moved them into assisted living. She improved to a stage 4.

MamaV · February 28

https://alzconnected.org/discussion/75459/when-did-it-start

My DH was diagnosed with MCI in 2017 at the Cleveland clinic. He had gone to a neurologist himself because he thought his memory was worse than normal aging issues. A neuropsych test showed that he might have right posterior cortisol atrophy. He was 66. He took care of finances. He was a bankruptcy attorney so I didn’t pay attention. Unbeknownst to me he was taking out credit cards, donating a lot of money to our temple and basically draining any retirement funds in his name. By the time I became aware we were close to bankruptcy. He just didn’t seem that bad to me. I took over the finances about 5 years ago. This last year he has declined quickly, and was diagnosed with mid stage Alzheimer’s. Stage 6. Now things are pretty challenging. I’m just starting to look at the help available in different organizations. So sad. He was a brilliant attorney and now doesn’t even know his birthday or address and sometimes forgets my name. We have been together about 50 years. This is so hard. Sorry if I’m rambling! I’m glad I found this forum ❤️

Sunfish47 · February 28

Sounds like having issues using a previously familiar computer program is an early tip for some folks.
My DH and I were long married and semi retired from our previous careers, working a few days a week at our in home product distribution business. His job was to take the orders from our regular customers, send the orders to the factories, and then prepare the invoices our customers would receive upon delivery of the product. When I noticed he was having trouble, and spending a long time, hours - trying to generate a customer’s invoice using the special software system that HE HIMSELF had designed was when I realized there was an issue. He was 78.

Arrowhead · February 28

I don’t remember noticing any problems, (it’s been 10 years) but then her shop steward gave me a call. My wife worked for AT&T as a troubleshooter for business phone systems. It was complicated computer work. Her steward told me that sometimes she didn’t come to work; I left before her so I didn’t know. She could no longer do her job. They tried giving her simpler things to do but that didn’t help. She was given a leave of absence while we worked with a neurologist and six months later she was diagnosed with Alzheimer’s at 61. Shortly after that she took early retirement.

Maru · February 28

https://alzconnected.org/discussion/75459/when-did-it-start

DH, 90, with AL and vascular disease. He had an undiagnosed small stroke in 2016. There were a lot of memory issues following that but that lasted only a couple of months. From about 2019 forward he was complaining that he couldn't remember names of various sports figures. We just attributed that to normal aging. In 2023 we almost got scammed out of $30,000 due to his responding to an online alert sent by a scammer. When he had his yearly check-up the doctor gave him the simple standard 10 question for dementia and he missed 3 parts. He was diagnosed with MCI. Following up with neurologist, involving brain scan, EEG and other tests showed he had AL. Although his neuro doesn't like to do staging per se, I would say that DH is probably Stage 3. But that is iffy. 90% of the time he seems perfectly normal and then, suddenly, he can't follow simple 2-3 step instructions. I get why the neuro doesn't like staging. You can be in Stage 2 and still have a one or two times totally miss the toilet peeing event, or a one time mis-labeling family relationships without being in Stage 4-5.

dayn2nite2 · March 1

While there may be behavior or an event that made you think "what's going on here?" I have always suggested looking at old photos from like 10 years before it was clear something was off. When I did, it was remarkable - very clearly my mother had a completely blank face in photos starting about 9 years before multiple odd things and diagnosis occurred. It's most noticeable in group photos. No smile, just a blank expression.

sandwichone123 · March 1

In 2016 my dh (age 54) started having trouble finding words, especially nouns. We thought it was related to his BP meds, and worked to get those corrected. When he would go to his provider, things were never corrected properly, but it never occurred to me that perhaps he wasn't telling to doc clearly and/or he wasn't reporting back to me correctly.

In 2020 when we were working at home he had a lot of trouble getting onto the internet on his work computer. He called support several times a week, but it never occurred to me that he wasn't able to follow the instructions, or maybe remember the code long enough to input it. His boss was mean to him, but I didn't know why. In December 2020 I got in his business more and realized what was (not) going on. We got him to a neurologist, I started paying all his bills. March 2021 we got him retired from his job. He hadn't been able to log in and do any work since at least November. Just days later we got the diagnosis needed to apply for disability. He was 59. By the time he turned 60 he was no longer safe at home, and moved to memory care. Now, at 63, he's on hospice, early stage 7 IMO.

BPS · March 2

My wife was diagnosed in 2016. Thinking back I can't remember what all led us to getting her tested (maybe my memory is failing too). It has been a long slow mostly steady decline that just keeps going.

harshedbuzz · March 2

The situation with my dad was somewhat different in that he was diagnosed in the hospital after being brought to the ED during a psychotic episode. The neurologists took a history from both mom and me— they were very different narratives.

I had been trying to get mom to have dad evaluated for about a decade during which time she blew me off saying his behavior was "a normal part of the aging process". My parents split the year between MD and FL which meant that while I didn't see them often, when I did, I stayed with them and got a good sense of dad's abilities over a couple of 24/7 periods. Many PWD can and will showtime for family members during a shorter visit, so this gave me a good sense of what day-to-day was like.

The first changes I noticed by 2005 were more mood and emotions related; dad had always had some untreated mental health issues and took a turn to his darker side. I'd always been on the receiving end of these moods, but what changed was that he was tetchy and mean to with mom and my son and nieces. He also became unfiltered in social gatherings which burned thought social groups in PA and MD around this time. By 2008 he was showing significant issues with remembering his personal history. I recall taking him to a band event a couple hundred yards from the business he owned with his brother and him not recognizing the area or remembering the business. He also started to conflate family history which took the form of accusing me of all manner of evil deeds my sister and his had done.

Around this time, he started to struggle with technology— replacing laptops because they were "broken" and asking me to "call The Google to get him back into his accounts". Just before this, he'd lost $360K day-trading online and purchasing security suites on auto-renew for his many laptops.

Dad wasn't diagnosed until 2016. Regrettably, one of his dementias was treatable and if it had been identified and treated, my folks would have had a much better quality of life until the Alzheimer's progressed enough to cause symptoms and behaviors. Because of his late diagnosis, he was well into the later middle stages and died less than 2 years later.

HB

rockymtngrrl · March 5

My DH and I have been together since 1989. He was always the "McGyver" with stuff, making me racks and raised garden beds etc. He also was pretty good at things like the tv remote, although he never was much of a computer guy. He could do simple things on it like work up a bid on a form I made for him. I would email it. But the hands-on, handyman stuff always got done well.

Then the quality of the items went down. This was in the 2000's. He started having trouble with the computer, and blamed it on me, saying I was "distracting" him. He complained he couldn't focus on his morning newspapers. We are 68, he's slightly older than me.

Then, during the pandemic I noticed that the bill for the mortgage was not sent on time like it had been for the last 20 years. One month we got a late notice. My DH would NEVER let that happen in the past. So I took it over, and started worrying. Then the utensils started moving around and daily naps at 4pm. Some over the top anger episodes.

My neighbor's wife had LBD, and to help, I was doing research here and it was clear what was going on with him at that point. By that time he was having trouble with doing jobs (he has a business in the trades). It took a year from the time I realized he had more than just aging issues (2023) to the diagnosis of mixed ALZ. Now he is in mid-stage. Slow, steady decline.

SpokaneTom · March 10

There were red flags that I let go by because of other family events. My wife's parents died within seven months of each other, later my Dad died. Grief masked the appearance of Alzheimer's. She kept saying "when will I return to normal?" The wake-up call for me was also a technical one. I'm a retired Software Engineer and so I do all the tech stuff for my family. But my wife has been pretty savvy as a bookkeeper used to being on computers a lot (eg. Quickbooks). One day she couldn't remember how to use a little USB drive, something she did all the time before she retired. It was then that I looked back and realized there were other signs, I just didn't see them for what they were. So my wife's diagnosis was probably two years late.

When did it start?

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