Ok - what can you tell me about all this - new to LBD

[Guest guest]

My Dad has Parkinson's for aobut 10 years now ... no tremors but

difficulty walking.

Last August he got pneumonia and has gone significantly down hill

since then. First the hospital setting really throws him and he gets

even more confused.

he was in again Thanksgiving for UTI, again in Dec UTI, again Jan pneu

follwed by UTI - followed by C diff !

This last stay has been three weeks - he was moved to rehab two days ago.

But his mental state has also drasitcally declined. He gets very

confused - sometimes " zones out " and won't respond at all. he hasn't

been eating ... won't take meds - can't swallow well.

When he's " in " he knows us and all - but has these bizzare stories

about thinkgs that happened (that didn't really) .. other times he's

just to out of it to even acknowledge we aret here.

This is supposedly classic LBD ? Neuro changed meds from

Sinemet/Permaz/Comtan to just Sinemet and Aricept ?

He's in rehab - but they can't get him to cooperate so I'm not sure

what's going to happen next.

They are talking feeding tube ... and NH ! We hoped to avoid both. We

have been taking care of him at hom e- but he has become compltely

immobile and incontinant (not a good combo for a 170pound man who

won't cooperate !).

Thanks in advance for any info you can share.

Donna

cg to Dad 80

[Guest guest]

Donna:

Sure sounds like LBD to me. Your dad is one of many who come to this

disease gradually over the years and then, whamo!, almost overnight

it gets really bad. That sounds like your dad's case.

OK...what to say...what to say. Well, Donna, LBD sucks but I imagine

you already know that. There's not much to that can be done apart

from medically trying to manage his symptoms. Unfortunately, sooner

or later, meds no longer work and we're left with dealing with the

harsh reality of LBD complete with the hallucinations, the physical

ailments and the incontinence. It's completely normal for your dad

to have periods of clearer thinking followed by periods of confused,

bizarre thinking. Cognitively, LBD runs the gamut in terms of how it

manifests itself. Generally, it causes paranoia, irrational thinking

and an inability to make good and safe decisions. Like I said

before, it really, really sucks!!!

The good thing I suppose is that there are somewhat longer periods of

recognition than there are in Alzheimers but, make no mistake about

it, your dad's periods of lucid thought will appear much less often

as this illness progresses. What we can do is try to take advantage

of those periods of clear thinking because that's the best we're

gonna get.

I'm surprised they're already suggesting feeding tubes but the part

re: the nursing home isn't surprising because it's very difficult to

care for an LBD patient at home. Lots of phenomenal people on this

board do it and they are my hereos but it's really tough!!! It's

especially hard when one person does the majority of the caregiving

because, as you can see, LBD is never easy and our loved ones become

this other person so often.

Don't know if I answered some of your questions. I do know that

there are tonnes of great people on this site that will give you

great information and guidance about where to turn and what to do. I

also know that if you go on the " Files " section of this site, there

are lots of documents and information sheets for you to copy and give

out to whomever it is that is taking care of your dad now and perhaps

even for you to read.

Good luck Donna. You've made a great decision to post here.

Everyone is amazingly compassionate and they all know more than most

medical person about LBD.

Welcome to a wonderful site and a wonderful group of people.

Abby

[Guest guest]

Hi, Donna,

I am so sorry to hear about your dad. You have really been through the mill

lately. It sounds like LBD to me, but certainly every case is different. You

will find great people in this group and someone out of us has experienced

just about everything, I think.

My LO with LBD is also my dad. We care for him at home, too. The doctor

prescribed Seroquel for him for his agitation, among other things, and it really

seemed to settle him down more. He has been a lot more cooperative about

things. You might ask your doctor if there is any medication he can prescribe

for

your dad to help with his behavoir. Some people have responded well to

Seroquel, others have not.

As far as the hospital thing, YUCK! My dad has been in the hospital one time

since he has had LBD, and it was the worst experience ever. He was totally

disoriented and turned upside down the whole time he was there. I have never

been so glad to get out of anywhere in my life!

You will be in my thoughts and prayers. Let us know how you are doing when

you have time, and welcome to our group

Hugs,

Piper

[Guest guest]

Hello Donna:

I am sorry aout your dad. I am concerned about the feeding tube. I know

they stop eating at a point. My dad did that, but the feeding tube will be very

upseting to your dad. I know this is two days old and am sure you got

responses, but I am far behind and am trying to catch up. Welcome to our group,

you

will find a great deal of support and information here. I'll keep you and

your family in my prayers,

Josie