It’s now 7 years since my mom’s mental health exploded with LBD.  I only started blogging in 2016 but it started before then.  It’s just that in 2016 things got really bad with broken hips, femur, infections, drama and more.  Oh my that was a bad year.  It’s the kind you want to not even think about as it was too bad, but then neither do you want to make an idol of trauma.

But it’s 7 years now.  And it very well possibly may be more.  With LBD you just don’t know.  It takes a person up and then down so low you think they are going to die, then back up to where you think they’ll live forever, then back down.  But in general the average span is 7-10 years from diagnosis.

It’s been so much more difficult than one could ever imagine.  Far, far worse than I ever thought it could be.  But there are many other factors in the mix that intensify it exponentially.  Hospitalizations, other people, finances, drama, her obesity and having one functional leg… And so much more that one can’t put online.

I’m such a different person now that I don’t even remember who I was 7 years ago.  In some ways I’m a much better person, and in some ways I’m much worse.  I know that when I come out of this I won’t have many friends as they want the old me and I’m just not that way anymore.  And in some ways that’s good.

The emotional exhaustion feels layers and years deep.  I hope it’s possible to come out of that.

Covid hasn’t helped much but it hasn’t hindered so much either.  Mom is rather incapacitated at this point.

She is still treated like a “zoo” animal by others.  People that don’t stop by find some excuse to do so.  They want to see the “crazy” woman so they can spread things far and wide.  Still infuriates me but mom wants company.

I still can’t stand when people say, “Have you tried…” as if I haven’t tried everything.  Or “You need a couple weeks of rest…” as if that were possible (and please don’t even think “have you tried….” about getting rest… trust me….we’ve tried).

Her condition is very strange right now.  At night she is growing much much worse.  Day time she is getting better with things.  ??

Part of me wants the pressure cooker nature and constant crisis to be over but I don’t want to lose my mom either.  Since 2012 we had only one year without major hospitalizations and surgeries.  Hoping for a second one this year but we’ll see.

There’s not a day that goes by where I don’t think about death and dying.  The brain is always trying to brace itself for the inevitable the radical life change that it will bring.

Anyway this isn’t an eloquent post.  The exhaustion is too profound for such things.  But another year “lewy-versary” is here.

One day at a time.

PS–I’d do it all over again.