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.

When did it start?

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