Sunday, March 29, 2020

Lewy Body Dementia

The verdict of the specialist we went to see Wednesday last.  Reading up on it, so obvious.  The symptoms describe Richard perfectly. 

He fainted that night, again the next morning.  Off to hospital.  Stayed for observation a day and a night and half a day.  All good.  All vital signs good.  Same old thing; a drop in blood pressure due to Parkinsons and the Madopar.  The specialist gave us a script for something which might lift 'the fog' of dementia.  One possible side effect, a drop in blood pressure.

One of the leading causes of death in LBD sufferers is falls, from which a cascading series of physical events occur (a friend's sister, an Alzheimers patient, died from a broken arm).  The other is pneumonia from aspirating food/liquid.

Richard had to return to bed this morning, very tired.  He's still limping from the first fall (I caught him the second time, cushioned his fall...I was the cushion).  His colour is not good.  Despite my yearning to have 'him' return to me with the use of the new drug, don't think I can chance it.  If he was 5 foot nothing and 50kgs, no worries.  But he's 6' and 78kg.  When he falls, he falls hard and far. 

The usual time from diagnosis to death is 5 to 8 years.  It can be 2 to 20.  Richard has been deteriorating more quickly.  I live with him all day every day, the deterioration should be negligible.  But it isn't.  I see it. 

I'm scared.

I'm also a better carer than I was.  I'm learning.  I'm loving more.  There is a bittersweet tenderness in this long goodbye.