nadine/sharon m

[Guest guest]

nadine,

boy oh boy does your story ring true to me, my dads symptoms were very

simoilar to your dads, and at time i lived in tenn while he lived in pensacola,

florida, we eventually moved down here and continue staying here as he has

passed away now. dad started with hallucinaitions and unexplained falls. he

also had shakiness but his started in his right side and my gut feeling is that

it usually starts on the dominant side, as my dad was right handed.

the restless legs you are talking about when he naps is called RLS Restless Leg

Syndrome, but many lbders have RBS Restless body syndrome , where they

frequently thrash and flail and maybe even holler out in their sleep.

the loss of words is very common as well my dad would leave it blank or come

out with something outrageous, but i dont remember it being a rhyming word, but

then every lbd patient is a little bit different.

the seeing of animals is very common, my dad saw cats all the time as he was a

cat lover. most of their hallucinations do not scare them which is good,

however my dad origainnly had some very scary hallucinations where he thought

the kgb or cia were after him my dad was a naval helicopter. but wasnt

directly involved in any wartime activites. thank God.

i think you are right i think you r dad sounds like an lbd patient. and i

honestly believe that lbd is worse than ad (alzheimers dementia) as the patient

can sense somethiung is wrong and may even be aware that what they are saying

(Like in restaurants) is wrong but since the frontal lobe is normally affected.

this is the part of the brain where tact, inhibitions and such is. my dad

thought he was my pimp and would yell and scream at me at the top o f his lungs

even when he was in the hosp, that i did nt bring him the money, that i was a

lousy f**** etc. very very embarassing. and he too said very inappropraite

things esp to big breasted women which dad loved big breasts.

One of the caregivers that was on teh caregiver panel said something very good,

which iwish i had known about becuase it would have helped me during these

times.

you can go the the website for the lewy body dementia association ( www.lbda.org

) and order brochures about lbd, and leave them at the table or give them to the

offended person, along with a little card that says

Please forgive this man, he has Lewy Body Dementia, and does not realize what he

is saying, We are so sorry that he has said/done something offensive. Thank

You.

and then give them both and that should help your embarassment alittle. you see

they go back in time in their minds when they are in the lbd state, so if they

grew up calling afro-americans black or colored or worse that is what

language they will use. they do not remember or understand, diplomacy, tact

,etc.

my advice to you is this:

first of all, make sure that all legal documents are in place, Power of atty

(poa) wills, etc.

second, start laying out a game plan as the time will come when he cannot live

by himslef, you may have to move there, or have him move to you , or find some

live in help etc, by the say, dont be surpirsed if he does go to the doctor

and he is fine then somehow lbd'ers are able to do 'showtime' which is for a

period of time they are lucid and have no symptoms but at an instant revert back

to lbd state. my dad knew he would call his mom and sis every sunday so he

would be out of it all week and when he talked to then he was lucid and perfect

and htey were sure nothing =was wrong with him.

third, documnet, document any changes you see, good bad etc, learn as much

about lbd as you can, the lbda org has alot of great info on their website. and

was started by a group of caregivers from this site. also if you want read thr

some of the old posts from the group, you can type in a word or sentence and it

will pull up some emails with those wrods in it. hint if you see OT in the

subject line it means off topic, usually personal news from someone in the

group.

and finally use this group, ask questions, yell scream cry laugh shout,giggle

whatever we understand becuase we have either been thru it or will be going

thru it,

welcome to our family, hugs sharon m

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall

7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

---- nadley54 wrote:

Greetings, friends! I'm new to this list. Please permit me to

introduce myself (and my father, who I am very concerned about).

I'm a 50-something woman who lives several states away from my 80-

year-old father. He lives by himself in my parents' home of 40 years

(my mother passed away about a year ago). I visit him as frequently

as I can. I am certain that he is suffering from some form of

dementia, and I have a sneaking suspicion that it is LBD, but there

has been no official diagnosis yet. So far dad has strongly resisted

any suggestion of consulting a doctor about what he calls his " memory

problems. " He insists they are normal for someone his age.

It was several years ago when I first noticed that something wasn't

quite right about dad. Always an intelligent and articulate man, he

began mispronouncing words, choosing the wrong words, and frequently

drawing a blank and pausing in his speech when he couldn't think of

the right word. He also became confused about driving directions

when driving somewhere unfamiliar (for instance, to visit Colonial

burg in Virginia). This had never been a problem before--he

and my mother loved to travel and did so frequently after they

retired.

He also became compulsive about things like checking and rechecking

locks, making sure everything in the house was in its proper place,

and adhering to a set daily routine. His memory started to slip, his

attention span grew shorter, and complexities confused him, but my

mother (whose mind remained sharp) was able to " cover " for him for

many years. Also, there were times when he seemed to " come out of

the fog " and be (almost) his old self, which led my mother to believe

that during his periods of confusion, etc. he " just wasn't trying. "

She dismissed all my suggestions and urgings that dad needed to see a

doctor.

Dad developed a tremor in his left hand which made it difficult for

him to write (he's left-handed). He now has tremors in both hands as

well as his feet. (I've seen the feet move when he's taking a nap.)

His gait started to slow, and he now walks extremely slowly, although

he does not shuffle and he is not stooped or hunched over.

Even while my mother was still alive, my dad's personal hygiene

started to slip. Instead of showering daily, he decided he would

only shower twice a week (when he needed to wash his hair with a

prescription shampoo). Other than that, he would not bathe except to

splash cold water on his face in the mornings. He either forgot to

use deodorant or decided he didn't need it. But he would still brush

his teeth every morning and evening! He would wear the same clothes

(even underwear) until the next time he took a shower; then he would

put on fresh clothes and wear them for the next 3-4 days.

A few years ago, I noticed that dad would sometimes hear things that

weren't there--most frequently a dog barking outdoors. He's very

hard of hearing and ordinarily doesn't hear the real dog-barking

noises of the neighborhood, but he would insist he heard a dog

barking when neither my mother nor I did. The same thing with birds

chirping. To my knowledge he has never had a visual hallucination.

Socially inappropriate behavior has been an increasing problem. It

consists mainly of pointing at people he sees in the room (such as a

doctor's waiting room) and asking in his normal voice (to either my

mother or me), " Do you think that woman dyes her hair? " or " Do you

think she's Jewish? " He is very offended at the sight of

overweight persons and has been known to tell people in restaurants

that they shouldn't order a big meal because they're too fat

already. Lately he has started telling people (in the grocery store,

for example) that they " stink " if he doesn't like their appearance.

He has always been a critical, judgmental type of person but has

never been rude to people to their face like this. I'm always having

to apologize for him when we go out anywhere (which, of course, makes

him angry with me).

He goes to the bathroom frequently (he says he goes " at the slightest

urge " ) and he is very preoccupied with the functioning of his

elimination systems. It is a frequent topic of his conversation. He

also has reverted to the " bathroom humor " of a young child, and he

sometimes enjoys " entertaining " people with burping and passing gas.

At other times he remembers that's not socially appropriate behavior.

Well, the good news is that we may be approaching a breakthrough--he

has finally allowed me to make an appointment with his GP for his

trembling hands. I've been telling him for years that there are

medications that can help with tremors, and he's finally ready to

seek help for that (and that ONLY). The tremors have gotten so bad

that he can no longer hold a glass (even with both hands) without

spilling the liquid. My hope is that the GP will refer him to a

neurologist PRONTO for a complete workup.

So many of his symptoms seem like AD, but the fluctuations in

cognitive function, the auditory hallucinations, and the Parkinson-

like physical symptoms seem to suggest LBD. (I am not a doctor,

nurse, or any other kind of health care professional, so this is

purely my amateur speculation!) Is it possible to have both

diseases?? His father had some type of dementia that was never

diagnosed--he died at age 72. (His mother, on the other hand, lived

to be 110 with no dementia!)

If any of this sounds familiar, I'd appreciate hearing from you!

I've been reading prior posts and it seems that many of you are

contending with very similar things.

Thanks so much for listening,

Nadine in Virginia

*****************

Welcome to LBDcaregivers.