james/sharon

[Guest guest]

james

first God Bless You for what you are doing, you are a wonderful caring person,

hugs,

and now dealing iwth your letter,

ok about the 'spells' it sounds to me like what my dad had which was orthostatic

bp, which is when the person's bp drops from changing postiions from laying to

sitting, sittyi to standing, standing to walking, he needs to take his time

and give himself a chance to balance his bp out before going to the next step,

we found having my dad wear oxygen only when he was getting up and moving

around. that helped quite abit,

for sleeping and agression my dad took zoloft 50mg for the frist 6months, then

100mg for thenext 6months and topped out at 150 until his death.

you talked about sexual inappropraiteness, that was so common with my dad, he

talked to his friend and pimped me out. for $100 and was extremely descriptive

of what i would do for him. very embarassing esp as i still see the man he

pimped me out as he is my firends dad' very embarassing. the frontal lobe i

belive it is called is teh first part of teh brain that is effected with lbd and

some other dememtias, this is hwere your morals and your inhibitions are. so it

is very common for lbders to say inappropriate thigns. my dad would grab all

boobs aournd nurses, doctors *he had one lady doctor* mine, our cg *caregvers*

and he would describe what he wanted to do to us. the only thing we could do is

leave teh room and come back a few minutes later and change the subject, if he

does this in public you may want to carry little business like cards taht say, i

am sorry if my friend has upset you he has a dementia called Lewy Bodies Disease

and give the website for it,

and please dont feel yo have to apologize for venting, that is what we are here

for, and if you wish to vent to me, feel free to personally email to me, i am

off / on all the time, i sleep 2-3 hours up 2-3 hours so you never konw when i

am online hugs, sharon

---- Baucum wrote:

Hello to everyone. I'm new to this group and dont usually write in these groups

but I read alot of the mail to get information. My name is and I recently

retired from Law Enforcement and went back to school. Last year I met a very

nice family who were having trouble with their 57 year old brother who is also a

retired police officer. He also got a masters degree in social work and worked

many years with children and adolesents. He was a genius and from what I have

learned he was a great humanitarian, loved kids and was a real people person.

He is now just a shadow of the person he once was but he is still a good guy

deserving assistance. Anyway he came down with LBD a couple of years ago but

the symptoms were there a few years prior to that. How I came into the picture

was that they tried to get him to go to an adult daycare and he would not do it.

It scared him. So I agreed to start spending time with him during the days and

we grew to be good friends and he

feels safe with me around which helped with his paranoia. And he now thinks I

am his brother. His sisters were doing everything they could to try and help

him and still live their lives and it got too much to handle. They cant afford

In Treatment anywhere and he hasnt done anything to be committed, and from what

I hear he is too young to go into a nursing home environment or assisted Iiving

without them having to pay an exorbant amount of money. And from my experience

in Police work and working at a treatment facility for five years, I agree that

being in a Nursing Home away from family is what makes their decline in life

accelerate. I personally think they lose hope and thats not what we want for

Homer. My role increased to staying with Homer 24 hours a day after he fell one

day a few months back. He was ok, but nobody could tell us what was making him

fall. I thought it was a TIA or a stroke or a seizure but no one can tell us

for sure. Homer is a strong guy and

really hasnt shown the parkinsons effects of the disease. But some days the

right side of his face will lose all expression and form and I think its a

stroke but the next day he is fine. But there are a lot of things that we cant

figure out or know why he does the things he does. And I thought maybe some of

you who have had more experience with this could help. Some of the things he

does is that he wanders continuously, leaving the house and we have to go find

him. And on some occasions he walks into neighbors houses without being asked.

Luckily, he lives in a great neighborhood and all the neighbors know of his

ailment and are very supportive and helpful. But the constant wandering goes on

night and day. Also he will not sleep for any period of time and goes days

walking around like a zombie. Just exhausted. We started giving him benadryl a

few months back to help him sleep but it doesnt work and I think that may be

whats making him faint and fall. And Ive also

read recently that others are having bad side effects from the diphenhydramine

also. So his doctor put him on Trazadone for sleep and it seems to working. He

also takes reperidol. He doesnt make sense when he talks which is expected with

dementia along with hallucinations, but he has good days where he is almost

normal and then days where its real bad. He fell again the other day and I think

it was a seizure. When he falls he knocks himself out cold and we have to send

him to the ER via EMS. But they always send him back rather quickly saying he

is ok. Its like nobody knows what is causing this and nobody is giving the

family any advice to help. In my younger years I worked as an activity

therapist at an In Treatment facility and we worked with Alzheimers patients and

it seemed that by getting them outside and doing things it prolonged their lives

or at least improved the quality of life for them. So thats the approach we are

taking. But here lately he is declining

more rapidly. Some of the things that maybe some of you may be able to give

advice for are as follows. He talks very vulgar on some days saying very

inappropriate things, He constantly sneaks away from the house and I often find

him urinating in alleyways or in neighbors front yards. When he goes on his

walks he inevitably takes things that are not his and brings them home, like

balls, newspapers, and anything he can get in his pockets and yes we've had

several talks with the police who usually are not very understanding. At the

end of the day we have to go through all his pockets and retrieve all the things

he has accumulated throughout the day. Also several times a day he will go in

his room and put all his clothes on and usually wears his underwear on the

outside of his clothes and sneaks out of the house. I understand that he needs

constant re-direction and we are ok with that. Its like he gets into a loop

where he does the same thing over and over and I curb

that by taking him out of the current enviorment he is in and get him away for

a while. But it starts up when we get him back home. He was violent for a

while and has gotten very angry with me at times, but that is starting to go

away. May be something to do with the fact that I'm 6'5 " and 260 lbs, ha. He

also gets up at night and fills all the drinking glasses in the kitchen with

water and sets them on furniture and shelves all over the house. His life

revolves around eating and thats a good thing because he is losing weight very

rapidly. But he is still physically strong. But we're starting to have

problems with getting him to eat. Some of the things I do is to take him on

long rides in the country or down to a lake where we walk and thats when he does

the best and is happy. But when I try to get him to do any cognitive things

like reading or doing simple kids games he gets very frustrated. I try to do

things where he will have to think but thats not working so

we just rely on the nature walks. Anyway I just needed to vent and I apologize

for the length of the email, but if anyone else is experiencing this type of

behavior or if anyone has any kind of advice we would appreciate the input. If

not then thanks for listening.

epthompson wrote:

For at least a limited time, you can read the whole paper here:

http://ajp.psychiatryonline.org/cgi/content/full/164/6/910

What I find *REALLY* interesting is that the drug status of these

patients wasn't examined. I think there's a perception in long-term

care that the cholinesterase inhibitors and the NMDA drug are

" useless " in late-stage AD, for starters. They also get *VERY* happy

with the antipsychotics, which is associated with decline and

mortality in the demented. I can't believe they didn't attempt to

control for those factors.

Here's my wacky hypothesis - those who were using more adult day

services have more-involved family members who were encouraging the

use of adult day, and are more involved in the patient care decisions

after the LTC placement. Just a hunch, but the study doesn't provide

enough data to make that clear or rule it out.

E

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Boardwalk for $500? In 2007? Ha!

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