Re: Re: Hi all - I'm new to the group.

[Guest guest]

Welcome GC. Absolutely welcome! But I almost hate you, because you live in

my beloved Florida. Daddy was raised in New Smyrna Beach. Back in 1906 onward.

Enjoy the place with all your heart---for me. Then I won't hate you, (Grin)

We'll help all we can. When you come across something holler, or just holler

if you need to. We take care of anything here. With a lot of love and

kindness, and some teasing once in awhile, a great while.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism.

In a message dated 7/10/2006 8:20:27 PM Central Daylight Time,

affiliated4you@... writes:

Hi!

I'm the brother of , and one of Dad's 4 sons. I joined your group a

week ago. It is my town (Daytona Beach, FL) that Dad will be moving to

shortly,

to try living with me. He will have me, my son ,and caretakers in the house.

And a 3rd son living 3 miles away! The 4th son is in NC.

Any experiences you nice folks can share, living with your own LBD LO,

would

be GREAT!

Thanks,

GC

[Guest guest]

I don't know what help you can get in Florida, but I have a niece taking

care of my sister in Ocala. I will write to her, and see what advise she has.

She always refers to Counsel on aging, and Dept. of Elder affairs.

I have taken advise from Geri Hall, PhD. on the Alzheimer's list to which I

belong. She told me if my loved one was fighting his hallucinations, that I

should get rid of all guns, and put special locks on drawers with knives, In

fact get rid of all I don't use, but the rest put in a locked drawer. Some

LBD patients see reflections in mirrors, or pictures, and have trouble with

them. If your home isn't kept locked that he can't get out, then that is a

must.

Special locks for them, so that they don't wonder at night.

Remove all throw rugs, on which they can trip. If there is a long hall you

might want to install a sturdy hand rail. For some reason halls are a problem,

as are dark places on the floor. The LBD patient thinks it's a hole. MY

husband has experienced that without a dark spot. He was watching very carefully

where he stepped as he said there were deep depression in the floor. That can

be a deterrent for some patients wondering. Put a dark rug in front of the

door. They are afraid to step on it.

You may have him come in and be fine one minute, and then he can be a

different person in a snap. You always have to be watchful.

LBD must be treated with a lot of gentleness and kindness, along with love.

We don't, and can't, argue with them. It's a no win situation. They become

highly agitated. So I change the subject, and keep it pleasant. My Love stays

calm most of the time.

Geri, also told me that I should wear a cell phone all the time, if he is

fighting his hallucinations. She said she has had patients that have called

from the basement, a closet, or a locked bathroom, and one patient killed his

wife. She couldn't stress safety strongly enough. Because, you never know what

hallucination will set them off.

I hope some of this helps until we can find help for you. My niece may not

be able to help, because she is dealing with AD, and that is a whole different

ball game. But, I'll see what she knows that perhaps I don't about Florida

laws and care.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism.

In a message dated 7/11/2006 11:45:46 PM Central Daylight Time,

affiliated4you@... writes:

Hi! GC here. Thanks for your concern.

The thing I'm trying to get done now is to get my house completely,

correctly set up for my Dad's arrival in a week or so. Do any of you have

contact

info for a national, and especially North Florida, group that helps

family-caregivers set up their home for their LBD-Loved-One?

Thanks!

G

[Non-text portions of this message have been removed]

[Guest guest]

Great advice! Thanks

G

In a message dated 7/12/2006 7:48:59 AM Eastern Daylight Time,

Iward27663@... writes:

I don't know what help you can get in Florida, but I have a niece taking

care of my sister in Ocala. I will write to her, and see what advise she

has.

She always refers to Counsel on aging, and Dept. of Elder affairs.

I have taken advise from Geri Hall, PhD. on the Alzheimer's list to which I

belong. She told me if my loved one was fighting his hallucinations, that I

should get rid of all guns, and put special locks on drawers with knives, In

fact get rid of all I don't use, but the rest put in a locked drawer. Some

LBD patients see reflections in mirrors, or pictures, and have trouble with

them. If your home isn't kept locked that he can't get out, then that is a

must.

Special locks for them, so that they don't wonder at night.

Remove all throw rugs, on which they can trip. If there is a long hall you

might want to install a sturdy hand rail. For some reason halls are a

problem,

as are dark places on the floor. The LBD patient thinks it's a hole. MY

husband has experienced that without a dark spot. He was watching very

carefully

where he stepped as he said there were deep depression in the floor. That

can

be a deterrent for some patients wondering. Put a dark rug in front of the

door. They are afraid to step on it.

You may have him come in and be fine one minute, and then he can be a

different person in a snap. You always have to be watchful.

LBD must be treated with a lot of gentleness and kindness, along with love.

We don't, and can't, argue with them. It's a no win situation. They become

highly agitated. So I change the subject, and keep it pleasant. My Love

stays

calm most of the time.

Geri, also told me that I should wear a cell phone all the time, if he is

fighting his hallucinations. She said she has had patients that have called

from the basement, a closet, or a locked bathroom, and one patient killed

his

wife. She couldn't stress safety strongly enough. Because, you never know

what

hallucination will set them off.

I hope some of this helps until we can find help for you. My niece may not

be able to help, because she is dealing with AD, and that is a whole

different

ball game. But, I'll see what she knows that perhaps I don't about Florida

laws and care.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism.

[Guest guest]

hello GC welcome ot our family although it saddens me that you had to find us,

here please feel free to vent, ask questions, scream yell, cry laugh whatever

it takes we all will understand we are /have been / or already had gone thru it.

be sure to go the website. www.lbda.org and find alot of hints there. from list

of bad medicaions to helpful ideas, i have one file there called hints to help

which has a lot of good suggestions, victoria has done a great job setting up

all the files and stuff. making it easier to find.

my first and foremost thought is to get all legal issues resovled now, power of

atty, medical directives, wills etc, before it is too late.

i also would suggets some slight renovations to the bathroom he will use, we

replaced all towel racks with handicapped bars we had them installed on both

sides of the wall to facilitate dads getting to the toilet and to the shower. a

commode chair with arms is a great idea, although we put up a handicapped bar

diagnol next to teh toilet, the high end being furtherst from toilet to ease in

getting up and down off toilet. we also did something i thought of myself, we

replaced the shower rod and had a steel bar secured into the studs so dad could

hold on it when he was getting in /out of the shower. that helped dad alot. and

he would cling to it while the hospice aided would give him a shower.

if there is anything else you need dont hesitate to call me, oh by the way,

one of the lewy body assoc scietific advisor practies at mayo in jackson ville,

her name is dr tanis ferman, she is so nice and friendly, i liked her alot

when i met her at the so fla symposium last year. also when you go the website

you can ordre the dvds from the syposium, the first cd is the two doctors

discussing lbd, and 2nd has questions and answers with dr ferman and then a

caregiver panel with us discussing our particular sitatuion and givnig hints and

advise to help, great videos, great resource and then you can copy cds and

give them to other family members, doctors etc.

good luck and 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

---- affiliated4you@... wrote:

Hi!

I'm the brother of , and one of Dad's 4 sons. I joined your group a

week ago. It is my town (Daytona Beach, FL) that Dad will be moving to shortly,

to try living with me. He will have me, my son ,and caretakers in the house.

And a 3rd son living 3 miles away! The 4th son is in NC.

Any experiences you nice folks can share, living with your own LBD LO, would

be GREAT!

Thanks,

GC

[Guest guest]

No, support group in Texas yet that I know about.

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02

No dx other than mine.

Re: Re: Hi all - I'm new to the group.

Do you know of an LBD Support group in Texas?

Imogene

In a message dated 7/12/2006 9:23:53 AM Central Daylight Time,

twomido@... writes:

Just a quick reminder, we do have an LBD support group in Florida. I think

it is in the Yahoo " footer " on the calendar.

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th

year in a nh.

She was almost 89 when she died in '02

No dx other than mine.

[Guest guest]

In a message dated 7/13/2006 2:21:21 AM Eastern Daylight Time,

LadySmilingAtU2@... writes:

hello GC welcome ot our family although it saddens me that you had to find

us,

here please feel free to vent, ask questions, scream yell, cry laugh

whatever it takes we all will understand we are /have been / or already had

gone

thru it. be sure to go the website. www.lbda.org and find alot of hints there.

from list of bad medicaions to helpful ideas, i have one file there called

hints to help which has a lot of good suggestions, victoria has done a great

job

setting up all the files and stuff. making it easier to find.

my first and foremost thought is to get all legal issues resovled now, power

of atty, medical directives, wills etc, before it is too late.

i also would suggets some slight renovations to the bathroom he will use, we

replaced all towel racks with handicapped bars we had them installed on both

sides of the wall to facilitate dads getting to the toilet and to the

shower. a commode chair with arms is a great idea, although we put up a

handicapped

bar diagnol next to teh toilet, the high end being furtherst from toilet to

ease in getting up and down off toilet. we also did something i thought of

myself, we replaced the shower rod and had a steel bar secured into the studs

so dad could hold on it when he was getting in /out of the shower. that helped

dad alot. and he would cling to it while the hospice aided would give him a

shower.

if there is anything else you need dont hesitate to call me, oh by the way,

one of the lewy body assoc scietific advisor practies at mayo in jackson

ville, her name is dr tanis ferman, she is so nice and friendly, i liked her

alot

when i met her at the so fla symposium last year. also when you go the

website you can ordre the dvds from the syposium, the first cd is the two

doctors

discussing lbd, and 2nd has questions and answers with dr ferman and then a

caregiver panel with us discussing our particular sitatuion and givnig hints

and advise to help, great videos, great resource and then you can copy cds and

give them to other family members, doctors etc.

good luck and 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

Thank you!

This email has great ideas in it, esp. the N. FL LB scientist at Mayo 110

miles north of here! And the POA advice, I've always wanted Dad to finish a POA.

Hopefully my brothers and I will get that done soon.

Also, I purposely bought this house 1 year ago for Dad. It has a big walk-in

shower with tile bench and ALL handicap bars in that bathroom, and wiiide

handicap-doors throughout if he ever needs a wheelchair.....

Thanks :-)

GC

[Guest guest]

gc please dont wait get the legal work done, mental changes are quick and may

not pass lawyers test of mental acuity, 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

---- affiliated4you@... wrote:

In a message dated 7/13/2006 2:21:21 AM Eastern Daylight Time,

LadySmilingAtU2@... writes:

hello GC welcome ot our family although it saddens me that you had to find

us,

here please feel free to vent, ask questions, scream yell, cry laugh

whatever it takes we all will understand we are /have been / or already had

gone

thru it. be sure to go the website. www.lbda.org and find alot of hints there.

from list of bad medicaions to helpful ideas, i have one file there called

hints to help which has a lot of good suggestions, victoria has done a great

job

setting up all the files and stuff. making it easier to find.

my first and foremost thought is to get all legal issues resovled now, power

of atty, medical directives, wills etc, before it is too late.

i also would suggets some slight renovations to the bathroom he will use, we

replaced all towel racks with handicapped bars we had them installed on both

sides of the wall to facilitate dads getting to the toilet and to the

shower. a commode chair with arms is a great idea, although we put up a

handicapped

bar diagnol next to teh toilet, the high end being furtherst from toilet to

ease in getting up and down off toilet. we also did something i thought of

myself, we replaced the shower rod and had a steel bar secured into the studs

so dad could hold on it when he was getting in /out of the shower. that helped

dad alot. and he would cling to it while the hospice aided would give him a

shower.

if there is anything else you need dont hesitate to call me, oh by the way,

one of the lewy body assoc scietific advisor practies at mayo in jackson

ville, her name is dr tanis ferman, she is so nice and friendly, i liked her

alot

when i met her at the so fla symposium last year. also when you go the

website you can ordre the dvds from the syposium, the first cd is the two

doctors

discussing lbd, and 2nd has questions and answers with dr ferman and then a

caregiver panel with us discussing our particular sitatuion and givnig hints

and advise to help, great videos, great resource and then you can copy cds and

give them to other family members, doctors etc.

good luck and 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

Thank you!

This email has great ideas in it, esp. the N. FL LB scientist at Mayo 110

miles north of here! And the POA advice, I've always wanted Dad to finish a POA.

Hopefully my brothers and I will get that done soon.

Also, I purposely bought this house 1 year ago for Dad. It has a big walk-in

shower with tile bench and ALL handicap bars in that bathroom, and wiiide

handicap-doors throughout if he ever needs a wheelchair.....

Thanks :-)

GC

[Guest guest]

You are so right, Sharon M. So right!

Imogene

In a message dated 7/22/2006 4:17:42 PM Central Daylight Time,

LadySmilingAtU2@... writes:

my dad was diagnosed may 2004, and went into hosp walking came out with

walker, we called atty in july he came to house and then took another 3 weeks

to

get all paperwork properly done by the time he came back 3 weeks later, dads

mind was enough out of it, that the lawyer said had he not specifically heard

what dad wanted before he wouldnt be able to do it as he didnt feel daddy

was mentally competent anymore. so please for all important legal paperwork

and for also visiting, remember one day tomorrow wont be there any more,.

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

[Guest guest]

my dad was diagnosed may 2004, and went into hosp walking came out with walker,

we called atty in july he came to house and then took another 3 weeks to get all

paperwork properly done by the time he came back 3 weeks later, dads mind was

enough out of it, that the lawyer said had he not specifically heard what dad

wanted before he wouldnt be able to do it as he didnt feel daddy was mentally

competent anymore. so please for all important legal paperwork and for also

visiting, remember one day tomorrow wont be there any more,. 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

---- affiliated4you@... wrote:

In a message dated 7/20/2006 11:13:47 PM Eastern Daylight Time,

LadySmilingAtU2@... writes:

gc please dont wait get the legal work done, mental changes are quick and

may not pass lawyers test of mental acuity, hugs, sharon m

My brothers and I will probably make sure that POA is done by August. Dad is

still very sharp, but POA is a good idea soon.

Thanks!

GC