Random thoughts from the early days...

I think many of us can look back and realize, only in retrospect, many early signs that we brushed off at the time. My partner's dementia became obvious in 2014 (so we're ten years in to overt symptoms), but she built our house in 2007 and her trim carpenter says there were issues even then.

My DW has vascular dementia. It became obvious in 2015 and dx followed in 2016. Looking back, I found that it really started in 2012. My wife was an avid reader and in June 2012 she ordered 3 books from Amazon. She never read them and has not read a book since. The first thing I noticed was a loss of executive function. Memory loss came later. It all sucks.

Keep his blood pressure under control. Read about leukoairiosis.

Iris

@MelissaNH

I think what you are experiencing is pretty typical. My mom is still revisiting the 10 years leading up to dad's diagnosis to make sense of it. Since their marriage had been one of extreme highs and lows, in part because if his volatile nature, onset of these behaviors escaped her entirely. In part it was because she was so close to the situation— she was truly the frog in a warm pot of water set on the stove not realizing she was about to get cooked. From a greater distance, I was able to see the bigger picture.

Most newbies come to dementia focused on the memory loss piece— noting the repeated questions and general forgetfulness. But dementia is about more than that. There's a constellation of subtle early changes— loss of empathy, apathy, poor executive function, loss or reasoning ability, loss of social filter— that can render the PWD difficult to get along with. Since family and colleagues don't yet have the context of a neurodegenerative disease, the PWD just seems like a jerk.

I don't think anyone would judge you for seeking support in a difficult time. You've been through some real trauma for which you could not have been prepared. Good friends will put what you said into proper context with this new information.

FWIW, my dad and I did not enjoy an easy relationship, so my concerns (shared with mom) were blown off as "you never liked him". In 2005, I saw his moods darken and some slipping of his public persona which cost him their social circle in PA and then MD. It wasn't until 2008 that I picked up on the conflated stories that resulted from his memory loss. By 2010 he was completely self-focused and unpleasant and began to sundown at times. He wasn't diagnosed until a crises in 2016— he was unable to recognize and advocate for my mom when she was seriously ill which caused her to agree to get him evaluated.

While waiting for the appointment, he had a psychotic episode which resulted in hospitalization and a preliminary diagnosis. When we were in the ER giving a history, I initially deferred to my mom, after all she lived with him. But her description of a sudden onset out-of-the-blue was leading doctors into zebra territory. They were prepping him for a spinal tap to confirm mad cow disease, when I took the resident aside and told him my version of dad's symptoms which led to a more garden variety WKS/Alzheimer's diagnosis.

At the time of dad's diagnosis, his doctor told him "people with Alzheimer's can live 10, 15, even 20 years". Mom was terrified that she wasn't up to the task. In reality, she's already slogged through a decade of it. Dad's middle stage of dementia was the hardest for all of us. He was unhappy and hell-bent on making those around him suffer as well. He actually told me this. He was still managing his ADLs and didn't need 24/7 supervision, but the emotional piece was so hard. As he reached the later stages, the physical caregiving became more intense, but he became calmer and even pleasant at the very end.

HB