Long overdue update

Belle

It's been a long time since I have posted on this forum. Not sure if I belong here any longer but I can't find another forum that even comes close to fitting our situation. For a quick recap my DH has had cognitive issues for over a decade, due to TIA's, white matter disease and an autoimmune disease. Significant history of various dementia's in his family.

Last Fall he had another long testing session with a neuropsychiatrist. I was able to slip the doctor a write up of his behaviors/issues that I observed. He was also given a fdg pet scan and he was referred for a drivers evaluation. He actually did better on the test than the previous one, when he had scores of zero in one area, but there were still two areas where he has issues. He passed the driving exam. There was no dementia detected on his pet scan.

Sounds great, right? Based on my write up and the interview they recommended that he needs supervision due to being a danger to himself and our pets. He still has the same cognitive/memory issues, he still cannot control his emotions, or complete any tasks around the house, he misses appointments, orders things on line then can't remember what he ordered, and refuses my help for anything. At this point I'm not sure if he's going to outlast me or live another year (he was given a mid/low survival score during his last hospital stay due to repeated infections).

This is the 11th year of trying to figure out what is causing his cognitive issues. I'm exhausted. I'm out of ideas or places to turn to understand what is wrong. Hope it's ok if I hang out here again for some support.

LearningCurve

Please, please hang with us!! xxx

Vitruvius

You are definitely welcome here and I agree you belong here. Please post as much as you feel inclined.

Carl46

Of course you are welcome here!

Quilting brings calm

Just because the neuropsychologist said his test scores didn’t indicate dementia, that doesn’t mean he doesn’t have dementia. He has white matter disease and he’s had TIA’s. I think both of those can be associated ( or possibly come before) vascular dementia. You definitely belong here - because your spouse is indeed showing dementia symptoms. Often a doctor will say it’s dementia after ruling out treatable things that it isn’t - without a determination of what IS causing it.

SDianeL

you absolutely belong and are welcome here. White matter disease is dementia. That’s the first diagnosis my DH received. White matter disease dementia- probably vascular. After 18 months the neurologist said Alzheimer’s-Posterior Cortical Atrophy. Not getting a definitive diagnosis is maddening but common. Keep doing the behavior list. Please come here often. Hugs. 💜

JeriLynn66

/belle, I'm glad you posted. I've been wondering about you and hoping you were OK. Please stay.

Belle

Thank you everyone I appreciate feeling like I belong here. Oh, and maybe my memory is not as great as I thought. Looking at my old posts this morning I see that I did in fact post an update 7 months ago right after his test results came back!