Seems to be progressing quickly

Call me Gram

Just two weeks ago, my DH was diagnosed w/amnestic MCI with concern for Alzheimer's. The neurology team ordered a "more thorough" MRI (than DH previously had), a PET scan, and the APOE blood test. Once those tests are complete, they will meet with us to discuss a plan.

Today, DH asked me how my mother was doing. My mother died in 2017. It wasn't just a normal situation either, because I was in a car crash on my way to be with my family on that same day (which DH has also forgotten). These very dramatic incidences seem like something DH should remember, as they are not "short term" memory, but life history (from my own perspective).

Is this something I should put in a message to the neurologist right now, on DH's patient portal app? Or am I overreacting and should I just wait to provide this info with other notes when we see the neurology team in a couple months?

Is this a routine symptom for stage 4? (…my own presumption as to where DH is on the DBAT or FAST scale)

Sometimes I panic and need to reel myself in… so your advice is deeply appreciated!!

terei

I would continue to make notes and make sure the dr has them prior to the appointment to review.

Quilting brings calm

Proceed with the tests. Have they suggested any medication like Donepezil for memory?

There’s not really much to do until they get the testing done and decide treatment based on that.

SDianeL

if he is having long term memory loss, perhaps he’s moving into Stage 5. Does he have any other behaviors of Stage 5? I would make a note of all of his behaviors and discuss with the Neurologist. Sometimes they can remember things in their past and sometimes they can’t. Someone explained it here that their brain is like a loose wire. Sometimes it connects and sometimes not. I found that doctors were no help. This online community helped me more than anything. I don’t know what I would have done without these wonderful caregivers.

Call me Gram

Thank you all. I reevaluated DH's behaviors on the DBAT staging tool and he is definitely in Early Stage 5, which is also described as "Late Stage or Moderately Severe Dementia."

It is sad that it took this long to get a diagnosis, but he is quite skilled at "showtiming" … not that it's intentional on his part. I guess we all put on a good face for the public, and show our closest loved ones the real us.

I think I was panicking. I will continue to keep documenting his behaviors for the specialists, and do what I can to prepare myself for what's to come.

As I've said so many times… I am so grateful for all of you, and this platform for our shared experiences.

harshedbuzz

@Call me Gram

I suspect he's further along and that your estimate of early stage 5 is spot on.

It's telling that he forgot this incident as often events with strong emotional content are recalled longer than more mundane ones from the same period of time. We saw this in my dad in stage 5; he often conflated memories, which felt like rewriting family history, in stage 4. In stage 5 he could not reliably recall whether my sister (his favorite and mini-me) was still alive.

FWIW, often neurologists will offer the MCI diagnosis initially and re-evaluate at a 6-month follow-up even when it's obvious to gamily that it's more than that.

HB