When did it start?

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.

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.

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.

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.