I'm confused and don't know what to do next, if anything

[Guest guest]

Dad (dx with LBD early 2011) has still been having a bad time of it since we saw

his neuro in Sydney around 6 weeks ago. His mood is still down because he was

hoping for some positive news from his neuro, only to have the opposite. Simon

(the neuro) brought up MRI images of Dad's brain and said there was significant

shrinkage/atrophy - much more than expected in someone of Dad's age and declared

that Dad wouldn't get any better...all of this directly in front of Dad who had

his hearing aids in and was very coherent on the day.

But last week was the worst. The docs have been playing around with his

heart/blood pressure meds to help with dizziness and in the midst of all the

'playing around' he had a really bad day, both physically and mentally. He told

Mum he was going to die soon and a while later, Mum found him sitting in the

back yard crying his eyes out. I've never seen my father cry. We have him on

Prozac to help with depression but it's almost as though it's not touching the

surface. Or perhaps it would be much worse without it. We're not sure.

I asked the neuro if Dad could try Aricept because I'd read good things about

it, but as Dad had recently had a very bad reaction to Seroquel, he said he

didn't want to put him on anything else. I could be wrong but I felt that it was

his way of saying " You took him off Seroquel so I'm not trying him with anything

else " , but we took him off it because his reaction was so terrible (hateful

thoughts/expression, extreme depression, inability to sleep, etc). So now, he is

on NO meds at all for Parkinson's or LBD and I'm worried he's pining away more

than ever. His appetite has decreased ever so slightly, his shakes are worse

(previously controlled my meds such as Sinemet) and his mood has gone

significantly downhill. He is more aggressive (verbally), particularly towards

my mother and seems to want to engage less with me, his only daughter.

The neuro mentioned above is the one who diagnosed Dad with LBD earlier this

year but I'm wondering if the diagnosis is even correct. From what I can tell,

the significant indicator of LBD is hallucinations. Am I right in saying this?

Dad has only had one or two instances that could be described as hallucinations

and they were very minor. No children or aliens climbing walls...nothing even

close. He thought that the flowers on a greeting card sitting on the mantle were

from the front garden. That's about as close as he has come to a hallucination.

Could it be that Dad has Parkinson's Dementia? His body seems to be the thing

giving up the most; difficulty walking, getting in and out of chairs/bed/car,

etc. I know people with LBD have both good (coherent/cognizant) and bad days and

Dad does have those. But as far as hallucinations go, if he has had any, they

were very minor. Do they often start out minor and worsen with time or are they

usually the same, dreadful ones from start to finish?

I have so many questions right now but I don't want to confuse things.

Should I seek another opinion from another neurologist? I wish there was someone

nearby (perhaps Sydney area) who specialised in LBD but I don't know of anyone.

I can handle (just) the thought of Dad passing away one day and I can handle

myself or other family members being stressed. What I can't handle is hearing of

my father crying and believing he is going to die soon.

Sorry if this is jumbled. I've been coping but desperately wanting advice from

those who know so much, ie. you in this group.

Many thanks in advance.

Tania.