RE: Questions about LBD

[Guest guest]

Hi Kathy and Welcome to the LBDA group,

I've only been on this website for about 3 months my mom having been

diagnosed 3 months ago. There are many more experienced people on the

site. But I can tell you that you're in the right place and you're so

right saying " It just isn't predictable " . Every thing you describe my mom

experienced except her bowels went the other way. Mom's favorite meal is

still breakfast but outside of that she just wants sweets and will get

belligerent and mean if you try to get her to eat her meals. She would just

eat ice cream all day if you let her (her favorite food). (You have to

chuckle because wouldn't we all like to eat ice cream all day long? But I

wouldn't stick to vanilla like she does, I'd mix it up.)

How is your mom holding up? Can she handle your dad by herself? Don't

let her reach the point of exhausting herself. Her health can really

suffer caring for someone with such a demanding disease as LBD. I've joined

a local LBDA group in my area which meets once a month and we all tell how

our month has been. It's very comforting and also very helpful to

understand the stages of this disease. For some handling their loved one

became too much to handle even with 24/7 help, but you do read on this

website of people being able to care for their loved ones at home til the

end. Everyone's situation is unique. Some members here are lucky to have

wonderful families that all share the burden of the care, but that doesn't

seem to be the norm. Some are caring for their loved one alone and their

stories are sad. Some can handle it with wonderful help. And others like

my mom, even with 24/7 help, it became impossible to handle her needs.

So yes everything you describe is normal Lewy behavior, the shuffling, the

paranoia, the eating, the belligerent behavior etc. I'm not making light

of the seriousness of the problems, but you just have to laugh at some of

their behaviors. Last week some people were also sharing funny stories.

It's good to laugh in spite of it all. (My mom would accuse others of

stealing her teeth! She would tell me " I'm not putting them back in my

mouth after they've been in someone else's " . Of course they were right

where they should be in the medicine cabinet.)

I'm not sure what stage your dad is in still being new to this disease, but

I can say my mom can barely walk only a few steps at a time now and has

other health issues. Some one in the group last week raised a good point

about how much other health issues our loved one has contribute to the

length of Lewy Body disease. I don't know if anyone really decided that.

But you seem to be on top of your dad's disease. Just know that all you

describe is normal behavior. You might want to have him diagnosed by a

neurologist who is experienced with LBD. Also my mom was diagnosed by a

geriatric psychiatrist familiar with LBD. This makes a big difference

because they are familiar with what works and doesn't work with LBD. From

my mom's experience the hit and miss of trying different meds is as

frustrating as all the behaviors. The diagnosis of LBD was the turning

point really. Knowing how this disease is different and how to treat it

differently really helped. It may take a while til the right combination

of meds are found. Don't give up. Mom has some measure of peace for the

first time in several years and this is an amazing thing. And the fact

that she's being cared for in a place just for dementia care has made a huge

difference also. They are trained to deal with all the aspects of LBD.

And last but not least this website is a gold mine of information. Any

issue you have someone else has dealt with it already.

God Bless you Kathy. The great thing about this website is that everyone

understands.

Marcie

_____

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of mybaby0908

Sent: Friday, August 19, 2011 11:12 PM

To: LBDcaregivers

Subject: Questions about LBD

My dad has been diagnosed with dementia, but never had testing to get the

formal LBD diagnosis but he seems to have the symptoms of this form of

dementia over the others.

He is still walking, but needs to hold on to things and takes tiny shuffling

steps. He leans to the left, but thankfully hasn't been falling yet. He sees

things that aren't there and is very concerned about not living in the right

house or in his hometown. He often doesn't know my mom, who is there 24/7

with him. I see him once a week and sometimes he knows me and other times he

doesn't. Lately his newest thing is that he isn't eating well. Sometimes my

mom said that he will eat breakfast and nothing else and other times he will

eat all three meals. It just isn't predictable. He has bowel accidents daily

also. He is getting more and more obsessive. If he drinks, we must remove

his glass as soon as he is done, etc. Sometimes he gets very beligerent,

other times he is very sweet (which is his normal personality)

I know dementia doesn't follow a predictable pattern, but does it sound like

he is nearing the final stage or still somewhere in the middle? Is it common

to be more aggressive at this stage or do most patients begin to mellow? Are

there any other changes that my mom should look for or prepare for?

Thanks

Kathy

[Guest guest]

Hi Kathy,

So sorry for your struggles, of course, as we all can empathize with you. I can

only guess that, no, your dad is probably not near the " final stage " at all,

since he is still so ambulatory and verbal. The behavior you have described

sounds much like my father, who is 80. His symptoms have been growing for over

3 years now, though we have only recently received a " diagnosis " . He takes

donepezil (Aricept) and Axona (a daily medical food supplement shake). He has

stabilized greatly since this medicine regimen has begun (about 2 months now)

and hardly ever experiences the not knowing or trusting my mom anymore. (Of

course, this may return, but it's nice while it doesn't!) He does hallucinate,

but mom is more able to redirect his thoughts. My father's walk has almost

become a shuffle, but other than a tremor (lessened now, since the meds, oddly

enough) -he doesn't have too many obvious physical symptoms. The neurologist is

not ready to give the dementia a name, though she is more inclined to identify

it as Pick's disease than LBD she said. Who knows? Anyway, there's my two

cents and personal experience... Ida

>>>>>>>>>

...... I know dementia doesn't follow a predictable pattern, but does it sound

like he is nearing the final stage or still somewhere in the middle? Is it

common to be more aggressive at this stage or do most patients begin to mellow?

Are there any other changes that my mom should look for or prepare for?

>

> Thanks

> Kathy

>