Random thoughts from the early days...

MelissaNH

I'm feeling so grateful to have found this place. I am in the beginning of this journey. I'm sure you'll all relate, though, when I say it's been hell for many years. I know it's been AT LEAST five, but now I find myself looking back and finally understanding all those fights (basically me fighting with myself because for the longest time I'd felt like he turned into a robot or a "tin man") over his apathetic behavior and lack of judgement. I cringe when I think about all the times I would share with a confidante about our marital issues and say, "It's like the lights are on, but nobody's home!" or "He is acting like a deer in headlights!" OMGawd. It makes me so sick to my stomach that I said those things and they were true. I can trace the behavior so far back and the progression of it all. I am so sensitive, empathic and observant - all traits I have a love/hate relationship with, but I KNEW something wasn't right. Does this resonate with any of you? The tracing back? I know it doesn't change anything, but it sure does explain things and put all the chronic stress into perspective and why I feel like my central nervous system is about to explode. After his initial appointment with the neurologist (we waited 15 months!!!) I felt so hopeful that we would finally get help. He had held a job for almost 6 months this time. Things were looking up (this was prior to his diagnosis). We left the office with four different referrals to various appointments (neuropsych, lab work, two MRI's and an MRA) and so I was trying to engage in him conversation (I now know why this doesn't work) and asked him how he was feeling about the appointment and upcoming appointments and he said, "I'm good. It's good. My gut feel is that I'm fine." I shared how I was not looking forward to dealing with the health insurance and I said, "I feel like I've just crossed the finish line of a Tough Mudder race and I wasn't in proper shape before we began, but they just announced that the Extreme version will begin in 15 minutes so we need to get ready!" I thought he'd get it as he participated in one of the first Tough Mudders at Mount Snow, VT back in like 2010. Instead he said, "I'm getting hungry. What do you want to eat?" He went to work after the appointment and they let him go and there went our insurance. What on earth?

M1

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.

MelissaNH

https://alzconnected.org/discussion/comment/207265#Comment_207265

I'm sorry. I can so relate. For the past five years I have not wanted him to do any house projects because, well, you probably know. Actually it started way before five years, but it wasn't AS BAD. I used to be able to describe what it was like, but now I feel awful saying anything negative. This just stinks.

midge333

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.

MelissaNH

https://alzconnected.org/discussion/comment/207281#Comment_207281

I'm pretty sure his is vascular as well. His first MRI stated extensive white brain matter indicating chronic microvascular ischemia / small vessel disease. I'm so sorry you and your wife are experiencing this. It's horrific.

Iris L.

Keep his blood pressure under control. Read about leukoairiosis.

Iris

ButterflyWings

@MelissaNH I am so sorry for this terrible wake up call. Yes, we get it. And the looking / tracing back "aha" moments. Oh yeah. A relief in a way, but such a sad realization as well. But try not to beat yourself up. We only know what we know. I had no clue…until I did. That is the nature of this, unfortunately.

I especially wish there were some way for your DH to not just be dropped from work like that. What a blow for you both. Imagine how that made him feel. I know my DH was just stunned and both stressed and depressed to learn that he had to stop work immediately on diagnosis. It was like a double curse: He is first informed that he has a horrible disease that will kill him slowly but surely after taking every single ability he has and then by the way, the only thing that allows you to feel like you are contributing in life…yeah you can't do that any more either, due to this disease. Effective immediately.

He lost everything in one fell swoop, except for me…the wife who was following him around to monitor his whereabouts (wandering had started), hassling him to stop driving, to stop taking money out of the bank, to stop working like the Dr. said, etc. What a horrible situation to be in.

harshedbuzz

@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