Another Newby Who Is Finally Introducing herself...Loooong

[Guest guest]

Well, bless my cotton pickin' boots. Hello Gayle, and a big warm welcome! I

am most please that you did come to the List, and you are welcome anytime.

I am glad you have made it here, and have written about your situation.

Not to worry about length. A back ground is desirable when there are

problems.

You really have one to start with, by being out so far. But, you are smart,

and have experience in nursing, so reading the books and literature isn't

totally foreign to you as it would be to some lay people. But, this is a smart

List. Very intelligent. Just not versed in LBD or other dementia's. But

learning there too.

The more you talk about your husband's problems the more it sounds like LBD.

Just like my husband, who, by the way, is on Zoloft to keep the aggitation

down. One night he fought his hallucinations. But, not since he is under a

fine Geriatric/psychiatrist.

You live in some of the most beautiful country in the US, but it is

inconvient not have medical help nearby especially with looking after your

father

too. I sure hope your own health is good because of the load you have.

My sweetheart walks a little stiff and bent over. He has also started

sitting and staring out the window while chewing the side of his mouth. He has

been

doing that chewing for the last couple of months. I told the doctor I was

concerned about him not doing anything but sitting and staring out the window.

He use to read, or watch Tv at least, if he wasn't doing something with me. I

guess it is part of the territory. I do see a decline in him. And he too has

forgotten how to do many things he did for many years. It floored me.

When Don first started having hallucinations, we talked about it, and

decided the best way to handle it is to tell them to leave. Don usually tells

them

to go home, and they fade away. They don't bother him.

Gayle, you are right about being afraid of the base ball bat aggitation.

Yes, see what more the doctor can do to curb that. Zoloft increased to 150 mg

over time, has helped Don a lot.

I need to go to bed, but I am glad you are here, and I do hope others can

help you.

Just like Carol incognito is searching for answers about the PET scan, many

are searching for various answers, and then share them with us as you have

learned already.

I can't wait to hear what Carol learns about the PET scan. That has me

highly interested.

Good night for now, and again welcome,

Imogene

In a message dated 11/3/2006 10:40:00 PM Central Standard Time,

ruralnrs@... writes:

Hello Everyone, I've been lurking here awhile and have learned so much

from you all. Was directed here by our dear Imogene when I asked a

question about my husband. I was explaining about some of his symptoms

and Imogene wrote to tell me that her Don, diagnosed with LBD had shown

the same symptoms and directed me here. Thanks so much again, Imogene!

I'm a 70 y/o former nurse,(LVN) here in a remote area in the N/E corner

of CA and miles from Geriatric specialists and anybody who seems at all

familiar with LBD. I'm 189 miles from the nearest Walmart. We're 27

miles from the nearest town with a Mom And Pop market and a small

hospital staffed with a nurse practioner, and a wonderful 83 y/o GP who

has probably delivered at least 3000 babies here and in Africa when she

worked ther 20 years with missionaries and there's also a young

Osteopath who recently joined the staff. I retired after working 33

years and I really miss it, but my 90 y/o Dad was diagnosed with

possible Alzheimers 3 years ago and last year my husband was too. I've

been taking Dad to a Dr across the border in a small town in OR. Dad has

been on Aricept and Namenda and I can't tell if it's slowed the

progression or not. His Postal ins covers it so we'll keep on with it

till the Dr thinks otherwise. He's still able to live alone in his

mobile home across the creek from us with me shuttling him to various

appts and doing some cooking for him. He obsesses about times and dates

and asks questions over and over but he's gotten no worse. After my Mom

died with Alz 6 years ago he was quite depressed for a year or so and

his Dr prescribed Lexapro which he took for about a year. I'm happy he

is stable.

My husband has had memory problems which worsened after he had prostate

surg 4 years ago. He absolutely refused to go to the Dr and when he

finally gave up it was because he couldn't empty his bladder at all and

allowed me to take him to be catheterized. He was totally confused when

he woke up after the surg and before the day was over had pulled out his

IV twice and tried to pull out his cath. I had to sit with him the first

night as they didn't have enough staff on duty to do a one on one. The

remainder of the time he had a sitter.He stayed an extra two days in the

hospital until he'd calmed down enough to trust him not to step out of

the car while I was going 65 miles an hour on the freeway. He was still

quite stuporous but I attributed it to all the nights he was getting so

little sleep from all the trips to the bathroom. When I took him back

to the urologist for his 6 week checkup, I asked what kind of aneshesia

he'd had and he said, " That wasn't the anesthesia, He was sundowning!!h

I felt like I'd been kicked in the stomach! So much for bedside manners

and denial.

He has arthritis in both knees so will only go for short walks with me.

He only seems interested in watching Westerns, over and over and will

usually nod off before the movie is over. He is 74 years old and walks

like an old man leaning into a head wind. He really doesn't carry on a

conversation, just asks or answers questions and comments on his likes

and dislikes. He usually shows little if any facial expression. When

relaxed, just looks blank with his mouth hanging open. I give him small

chores to do but he has forgotten how to go about doing so many things

that he was skilled at in the past. Now he has started having

hallucinations and gets up several times a night to check on " visitors "

that I can't see. Usually they're non-verbal but will smile at him and

nod or shake their heads to his questions. Mostly they were little

girls, some times 5 or 6 and sometimes young teens. He see's them

sitting in my rocker or the love seat. When I get up in the morning I'll

find a blanket spread out on the couch where he covered them, " because

they were cold " .He hasn't appeared upset with them but was concerned

because they refused food and drink. He says he's heard noises at night

out on the street and looking out he's seen these same children running

and playing tag. The newest " visitor " to appear is an adult male who

hubby isn't too sure about and at times he's sat up in his own chair

most of the night to keep an eye on him. Recently he threatened to call

the sheriff to make him leave our house. Then a few days ago, he told me

that he'd threatened the guy with a baseball bat if he didn't leave.

That really spooked me and I've been trying to find what meds he might

take for the disturbing encounters that would calm him and not

exacerbate his symptoms as some of you have experienced. I've searched

the various LBD sites on line and then ordered that book, Dementia With

Lewy Bodies and Parkinson's Disease Dementia. It's slow wading thru tho

and I'm highlighting all the stuff that seems applicable to hubby and

then when we go back on the next visit to the D in Dec., I will give it

to him as a present. If any of you have any suggestions for the meds

that have worked for your loved one, please feel free to suggest off or

online. Thank you so much for being here and sorry this is so long.

Bless you all, Gayle-in-the-Bless y

I had given his Dr a heads up about the halluciations the last time I

took my Dad over for his appt

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

[Guest guest]

Hello Everyone, I've been lurking here awhile and have learned so much

from you all. Was directed here by our dear Imogene when I asked a

question about my husband. I was explaining about some of his symptoms

and Imogene wrote to tell me that her Don, diagnosed with LBD had shown

the same symptoms and directed me here. Thanks so much again, Imogene!

I'm a 70 y/o former nurse,(LVN) here in a remote area in the N/E corner

of CA and miles from Geriatric specialists and anybody who seems at all

familiar with LBD. I'm 189 miles from the nearest Walmart. We're 27

miles from the nearest town with a Mom And Pop market and a small

hospital staffed with a nurse practioner, and a wonderful 83 y/o GP who

has probably delivered at least 3000 babies here and in Africa when she

worked ther 20 years with missionaries and there's also a young

Osteopath who recently joined the staff. I retired after working 33

years and I really miss it, but my 90 y/o Dad was diagnosed with

possible Alzheimers 3 years ago and last year my husband was too. I've

been taking Dad to a Dr across the border in a small town in OR. Dad has

been on Aricept and Namenda and I can't tell if it's slowed the

progression or not. His Postal ins covers it so we'll keep on with it

till the Dr thinks otherwise. He's still able to live alone in his

mobile home across the creek from us with me shuttling him to various

appts and doing some cooking for him. He obsesses about times and dates

and asks questions over and over but he's gotten no worse. After my Mom

died with Alz 6 years ago he was quite depressed for a year or so and

his Dr prescribed Lexapro which he took for about a year. I'm happy he

is stable.

My husband has had memory problems which worsened after he had prostate

surg 4 years ago. He absolutely refused to go to the Dr and when he

finally gave up it was because he couldn't empty his bladder at all and

allowed me to take him to be catheterized. He was totally confused when

he woke up after the surg and before the day was over had pulled out his

IV twice and tried to pull out his cath. I had to sit with him the first

night as they didn't have enough staff on duty to do a one on one. The

remainder of the time he had a sitter.He stayed an extra two days in the

hospital until he'd calmed down enough to trust him not to step out of

the car while I was going 65 miles an hour on the freeway. He was still

quite stuporous but I attributed it to all the nights he was getting so

little sleep from all the trips to the bathroom. When I took him back

to the urologist for his 6 week checkup, I asked what kind of aneshesia

he'd had and he said, " That wasn't the anesthesia, He was sundowning!!!

I felt like I'd been kicked in the stomach! So much for bedside manners

and denial.

He has arthritis in both knees so will only go for short walks with me.

He only seems interested in watching Westerns, over and over and will

usually nod off before the movie is over. He is 74 years old and walks

like an old man leaning into a head wind. He really doesn't carry on a

conversation, just asks or answers questions and comments on his likes

and dislikes. He usually shows little if any facial expression. When

relaxed, just looks blank with his mouth hanging open. I give him small

chores to do but he has forgotten how to go about doing so many things

that he was skilled at in the past. Now he has started having

hallucinations and gets up several times a night to check on " visitors "

that I can't see. Usually they're non-verbal but will smile at him and

nod or shake their heads to his questions. Mostly they were little

girls, some times 5 or 6 and sometimes young teens. He see's them

sitting in my rocker or the love seat. When I get up in the morning I'll

find a blanket spread out on the couch where he covered them, " because

they were cold " .He hasn't appeared upset with them but was concerned

because they refused food and drink. He says he's heard noises at night

out on the street and looking out he's seen these same children running

and playing tag. The newest " visitor " to appear is an adult male who

hubby isn't too sure about and at times he's sat up in his own chair

most of the night to keep an eye on him. Recently he threatened to call

the sheriff to make him leave our house. Then a few days ago, he told me

that he'd threatened the guy with a baseball bat if he didn't leave.

That really spooked me and I've been trying to find what meds he might

take for the disturbing encounters that would calm him and not

exacerbate his symptoms as some of you have experienced. I've searched

the various LBD sites on line and then ordered that book, Dementia With

Lewy Bodies and Parkinson's Disease Dementia. It's slow wading thru tho

and I'm highlighting all the stuff that seems applicable to hubby and

then when we go back on the next visit to the D in Dec., I will give it

to him as a present. If any of you have any suggestions for the meds

that have worked for your loved one, please feel free to suggest off or

online. Thank you so much for being here and sorry this is so long.

Bless you all, Gayle-in-the-Boonies

I had given his Dr a heads up about the halluciations the last time I

took my Dad over for his appt

[Guest guest]

Dear Gayle,

First, let me welcome you to the site. The people here are very

knowlegable and very friendly and helpful. I find that they have

more on the ball than my Mom's Doctors. :-) I guess it's because

they live it every day and some of them for years and years; where

doctors sometimes only read about it or occasionaly see someone in

their practice for 15 minutes...or probably just because we are

caregivers..and like someone wrote today, caregivers are a special

breed of people. I guess it's true.

Sorry to hear about your Dad and now your husband. I'm sorry that I

can't offer you any help in the way of medicines. I am struggling

with that myself. But, there are plenty of gals on here that will

get back to you and give you the heads up. Also, what I did was go

over some of the old posts...and just kept reading and reading...I

learned something new with everything I read.

Remember to take care of yourself through all of this. I know

sometimes it can be very easy to ignore our own health; I have done

it and it was not good for me. In fact, I am just recovering from

surgery that I ignored for 2 years because I kept saying I didn't

have time because I was too involved and busy taking care of

Mom...she is 79 with LBD...

Well, take care Gayle, I'm know you will find a lot of help and

support here, you are in the right place. Dear Imogene is a real

peach of a person. Sometimes you can just feel the charisma jump

right off the pages of type.

My best to you Gayle,

Carol Incognito

>

>

> Hello Everyone, I've been lurking here awhile and have learned so

much

> from you all. Was directed here by our dear Imogene when I asked a

> question about my husband. I was explaining about some of his

symptoms

> and Imogene wrote to tell me that her Don, diagnosed with LBD had

shown

> the same symptoms and directed me here. Thanks so much again,

Imogene!

>

> I'm a 70 y/o former nurse,(LVN) here in a remote area in the N/E

corner

> of CA and miles from Geriatric specialists and anybody who seems at

all

> familiar with LBD. I'm 189 miles from the nearest Walmart. We're 27

> miles from the nearest town with a Mom And Pop market and a small

> hospital staffed with a nurse practioner, and a wonderful 83 y/o

GP who

> has probably delivered at least 3000 babies here and in Africa when

she

> worked ther 20 years with missionaries and there's also a young

> Osteopath who recently joined the staff. I retired after working 33

> years and I really miss it, but my 90 y/o Dad was diagnosed with

> possible Alzheimers 3 years ago and last year my husband was too.

I've

> been taking Dad to a Dr across the border in a small town in OR.

Dad has

> been on Aricept and Namenda and I can't tell if it's slowed the

> progression or not. His Postal ins covers it so we'll keep on with

it

> till the Dr thinks otherwise. He's still able to live alone in his

> mobile home across the creek from us with me shuttling him to

various

> appts and doing some cooking for him. He obsesses about times and

dates

> and asks questions over and over but he's gotten no worse. After my

Mom

> died with Alz 6 years ago he was quite depressed for a year or so

and

> his Dr prescribed Lexapro which he took for about a year. I'm happy

he

> is stable.

>

> My husband has had memory problems which worsened after he had

prostate

> surg 4 years ago. He absolutely refused to go to the Dr and when he

> finally gave up it was because he couldn't empty his bladder at all

and

> allowed me to take him to be catheterized. He was totally confused

when

> he woke up after the surg and before the day was over had pulled

out his

> IV twice and tried to pull out his cath. I had to sit with him the

first

> night as they didn't have enough staff on duty to do a one on one.

The

> remainder of the time he had a sitter.He stayed an extra two days

in the

> hospital until he'd calmed down enough to trust him not to step out

of

> the car while I was going 65 miles an hour on the freeway. He was

still

> quite stuporous but I attributed it to all the nights he was

getting so

> little sleep from all the trips to the bathroom. When I took him

back

> to the urologist for his 6 week checkup, I asked what kind of

aneshesia

> he'd had and he said, " That wasn't the anesthesia, He was

sundowning!!!

> I felt like I'd been kicked in the stomach! So much for bedside

manners

> and denial.

>

> He has arthritis in both knees so will only go for short walks with

me.

> He only seems interested in watching Westerns, over and over and

will

> usually nod off before the movie is over. He is 74 years old and

walks

> like an old man leaning into a head wind. He really doesn't carry

on a

> conversation, just asks or answers questions and comments on his

likes

> and dislikes. He usually shows little if any facial expression. When

> relaxed, just looks blank with his mouth hanging open. I give him

small

> chores to do but he has forgotten how to go about doing so many

things

> that he was skilled at in the past. Now he has started having

> hallucinations and gets up several times a night to check

on " visitors "

> that I can't see. Usually they're non-verbal but will smile at him

and

> nod or shake their heads to his questions. Mostly they were little

> girls, some times 5 or 6 and sometimes young teens. He see's them

> sitting in my rocker or the love seat. When I get up in the morning

I'll

> find a blanket spread out on the couch where he covered

them, " because

> they were cold " .He hasn't appeared upset with them but was concerned

> because they refused food and drink. He says he's heard noises at

night

> out on the street and looking out he's seen these same children

running

> and playing tag. The newest " visitor " to appear is an adult male who

> hubby isn't too sure about and at times he's sat up in his own chair

> most of the night to keep an eye on him. Recently he threatened to

call

> the sheriff to make him leave our house. Then a few days ago, he

told me

> that he'd threatened the guy with a baseball bat if he didn't leave.

> That really spooked me and I've been trying to find what meds he

might

> take for the disturbing encounters that would calm him and not

> exacerbate his symptoms as some of you have experienced. I've

searched

> the various LBD sites on line and then ordered that book, Dementia

With

> Lewy Bodies and Parkinson's Disease Dementia. It's slow wading thru

tho

> and I'm highlighting all the stuff that seems applicable to hubby

and

> then when we go back on the next visit to the D in Dec., I will

give it

> to him as a present. If any of you have any suggestions for the meds

> that have worked for your loved one, please feel free to suggest

off or

> online. Thank you so much for being here and sorry this is so long.

> Bless you all, Gayle-in-the-Boonies

>

> I had given his Dr a heads up about the halluciations the last

time I

> took my Dad over for his appt

>

>

>

>

[Guest guest]

Gayle in the boonies,

welcome to our family although it saddens me that you had to look us up, imogene

is like my adopted mom and i chat wiht her quite often. i an glad she

introduced you to us.

it sounds very much like lbd. teh friendly hallucinations, the animals adn the

kids dont scare our loved ones, they just count them as part of the family.

about the hallucinations they are real to them, dont try to convince them tehy

are not, you will just cause fights and aggravation for both of you.

it is easier to change the subject than to tell tehm they are wrong, all you do

is make them mad.

oneof hte main rules of caregiving is to take care of the caregiver first

becuase noone willtake care of your loved ones like you do.

go to the home page of our yahoo gorups and you will find a lot of links to

valid information to help you.

please feel free to vent, scream, ask, rant rave, cry, laugh share stories, we

undersand and are here to hlep you, hugs, sharon m

---- ruralnrsfb wrote:

Hello Everyone, I've been lurking here awhile and have learned so much

from you all. Was directed here by our dear Imogene when I asked a

question about my husband. I was explaining about some of his symptoms

and Imogene wrote to tell me that her Don, diagnosed with LBD had shown

the same symptoms and directed me here. Thanks so much again, Imogene!

I'm a 70 y/o former nurse,(LVN) here in a remote area in the N/E corner

of CA and miles from Geriatric specialists and anybody who seems at all

familiar with LBD. I'm 189 miles from the nearest Walmart. We're 27

miles from the nearest town with a Mom And Pop market and a small

hospital staffed with a nurse practioner, and a wonderful 83 y/o GP who

has probably delivered at least 3000 babies here and in Africa when she

worked ther 20 years with missionaries and there's also a young

Osteopath who recently joined the staff. I retired after working 33

years and I really miss it, but my 90 y/o Dad was diagnosed with

possible Alzheimers 3 years ago and last year my husband was too. I've

been taking Dad to a Dr across the border in a small town in OR. Dad has

been on Aricept and Namenda and I can't tell if it's slowed the

progression or not. His Postal ins covers it so we'll keep on with it

till the Dr thinks otherwise. He's still able to live alone in his

mobile home across the creek from us with me shuttling him to various

appts and doing some cooking for him. He obsesses about times and dates

and asks questions over and over but he's gotten no worse. After my Mom

died with Alz 6 years ago he was quite depressed for a year or so and

his Dr prescribed Lexapro which he took for about a year. I'm happy he

is stable.

My husband has had memory problems which worsened after he had prostate

surg 4 years ago. He absolutely refused to go to the Dr and when he

finally gave up it was because he couldn't empty his bladder at all and

allowed me to take him to be catheterized. He was totally confused when

he woke up after the surg and before the day was over had pulled out his

IV twice and tried to pull out his cath. I had to sit with him the first

night as they didn't have enough staff on duty to do a one on one. The

remainder of the time he had a sitter.He stayed an extra two days in the

hospital until he'd calmed down enough to trust him not to step out of

the car while I was going 65 miles an hour on the freeway. He was still

quite stuporous but I attributed it to all the nights he was getting so

little sleep from all the trips to the bathroom. When I took him back

to the urologist for his 6 week checkup, I asked what kind of aneshesia

he'd had and he said, " That wasn't the anesthesia, He was sundowning!!!

I felt like I'd been kicked in the stomach! So much for bedside manners

and denial.

He has arthritis in both knees so will only go for short walks with me.

He only seems interested in watching Westerns, over and over and will

usually nod off before the movie is over. He is 74 years old and walks

like an old man leaning into a head wind. He really doesn't carry on a

conversation, just asks or answers questions and comments on his likes

and dislikes. He usually shows little if any facial expression. When

relaxed, just looks blank with his mouth hanging open. I give him small

chores to do but he has forgotten how to go about doing so many things

that he was skilled at in the past. Now he has started having

hallucinations and gets up several times a night to check on " visitors "

that I can't see. Usually they're non-verbal but will smile at him and

nod or shake their heads to his questions. Mostly they were little

girls, some times 5 or 6 and sometimes young teens. He see's them

sitting in my rocker or the love seat. When I get up in the morning I'll

find a blanket spread out on the couch where he covered them, " because

they were cold " .He hasn't appeared upset with them but was concerned

because they refused food and drink. He says he's heard noises at night

out on the street and looking out he's seen these same children running

and playing tag. The newest " visitor " to appear is an adult male who

hubby isn't too sure about and at times he's sat up in his own chair

most of the night to keep an eye on him. Recently he threatened to call

the sheriff to make him leave our house. Then a few days ago, he told me

that he'd threatened the guy with a baseball bat if he didn't leave.

That really spooked me and I've been trying to find what meds he might

take for the disturbing encounters that would calm him and not

exacerbate his symptoms as some of you have experienced. I've searched

the various LBD sites on line and then ordered that book, Dementia With

Lewy Bodies and Parkinson's Disease Dementia. It's slow wading thru tho

and I'm highlighting all the stuff that seems applicable to hubby and

then when we go back on the next visit to the D in Dec., I will give it

to him as a present. If any of you have any suggestions for the meds

that have worked for your loved one, please feel free to suggest off or

online. Thank you so much for being here and sorry this is so long.

Bless you all, Gayle-in-the-Boonies

I had given his Dr a heads up about the halluciations the last time I

took my Dad over for his appt

[Guest guest]

Gayle,

Welcome,

Glad to see you have the book. One of the things that eliminated many people

for Mom was covering the mirrors and any reflective glass in the house. And I

pulled my curtains early in the evening. I also left a light on in the bathroom

that was across from Mom's bedroom and left her door ajar.

I don't know where the nearest Alzheimers group is, but it would be worth it for

you to go for a couple of hours once a month. They had a separate group for my

Mom.

It sure sounds like you have been through a lot of dementia.

I wouldn't be so sure the MD was right about Sundowning. Anesthesia has been

know to be the beginning of many of our groups dementia.

Mom did much better when I kept her busy during the day, even if she didn't want

to. If she went to her day care, she did much better at night. I know it

sounds like you don't have that close by, but what ever you can do to keep him

up will help his sleep.

I use to take Mom out and she " raked leaves. " I did more work than she did, but

at least she was out in the air and going.

Even with that, I was up every other night, all night until I started her on

melatonin. That is OTC at any drug store.

Hope this helps and don't forget the " Links " that has organized at the

bottom of any caregiver message.

We have someone in California who has the DVD to share with you. It is a

meeting with MDs that one of our group did last Feb,

Hugs,

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]

HI Gayle,

Many LO's (loved ones) on this list are taking atypical anti-psychotics like

Seroquel. My mom went through a stage where she talked non-stop for hours on

end, she had terrible anxiety and lots of hallucinations (thankfully most were

just of children but she did have women visitors that disturbed her). Mom was

prescribed seroquel and we had her on the lowest dose 25mgs which we split -

half in the morning and the other half with her evening meal. It really helped

and any larger dose would turn her into a sleeping zombie. Best to you and your

husband.

Courage

[Guest guest]

I agree Courage.

I still think MDs don't get it. They gave me one of the no-no anti-anxiety

pills. Mom couldn't take a whole pill. She did just fine with it when I cut it

in quarters and gave her it four times a day. I did that on my own. I knew she

couldn't take a whole pill, but wondered what would happen if I gave her smaller

doses. It was an addictive one and at her age I didn't care. I just stumbled

on that by my self. It worked fine and what I fought the nh about for the whole

last year of her life. They wanted a zombie and she did just fine when they

finally listened to me. They gave her half in am and half in pm and it worked

fine too,

The nh was amazed at how well she did!!!!DUH!

I am sure someone else put your glasses in the drawer!!!

Hugs,

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: Another Newby Who Is Finally Introducing

herself...Loooong

HI Gayle,

Many LO's (loved ones) on this list are taking atypical anti-psychotics like

Seroquel. My mom went through a stage where she talked non-stop for hours on

end, she had terrible anxiety and lots of hallucinations (thankfully most were

just of children but she did have women visitors that disturbed her). Mom was

prescribed seroquel and we had her on the lowest dose 25mgs which we split -

half in the morning and the other half with her evening meal. It really helped

and any larger dose would turn her into a sleeping zombie. Best to you and your

husband.

Courage

[Guest guest]

Gayle wrote: Hi Janet,

Thank you so much for the kind welcome! Yes, I do live near New Pine Creek

maybe 35 miles. We're 12 miles from the OR border and about & from NV. We go

over the Fandango Pass(when it's passable, depending on our winters) to Lakeview

OR to do some shopping and Dad and Hubby's Dr. Lives there. And yes, I would

very much like a copy of the DVD. In fact I'd like two, in order to give Dr. G a

copy. Last time I saw him and was telling him I thought maybe hubby might have

LBD, he said he was getting a lot more patients with dementias. Can't help

wondering if it isn't something environmental. If you will send me an address,

I'll make a donation to the organization that's putting the DVDs out.

I didn't mention in my letter that my husband also has increased tremors when

he's deliberately working on something with his hands. Again, thank you so much

for the warm welcome. This is such an isolating disease, because even other

professionals don't understand what we're dealing with unless they're close to

someone with dementia. Three years after Mom passed away, my youngest brother,

55 dropped dead in his office from a heart attack and then our oldest dear

daughter was diagnosed with AIDs. A year ago as I was standing at the kitchen

sink I was just overcome with such a feeling of total exaustion and decided to

take my blood pressure. It was 248/146. I've taken care of patients who'd had

strokes with lower B/Ps than that! I got in to see a Dr the next day and was

asked what was going on in my life. When I listed the things, he said, 'I think

you're extremely depressed! " You know that never occurred to me, as I'd always

associated depression with tears and sorrow and

the feelings I had were more like anger as in " Knock it off and look for it

yourself! Try a little harder!! " with my husband? I've hated myself for these

inner reactions as I was given evaluations saying what a caring compassionate

nurse I was over the years but I sure didn't feel compassionate towards my

husband altho I usually didn't show it and I've felt such shame! I did have

feelings of hopelessness at times but in all this time I've not ever been able

to shed more than half a dozen tears, even when Mom and my Bro died. I guess

I've just shielded myself with a kind of numbness in order to keep on keeping

on. The Dr has me on Prozac, to keep a civil tongue and Xanax so I can sleep

longer than 2 hours and Benicar and Norvasc which has got my B/P under control.

I feel like a walking pharmacy. I sure hope they can find a cure in our

lifetime. Thanks again for your nice note. I tend to get long winded when I can

talk to another sane person who understands. I know you're

sane, I'm just not too sure of my own sanity. PS, if there's anything in this

ramble that might benefit some of the other folks, please feel free to share it.

All the best

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[Guest guest]

Hi,

I have sent two copies of the DVD in the mail to Gayle.... Jan

Gayle wrote:

Hi Janet,

Thank you so much for the kind welcome! Yes, I do live near New Pine Creek

maybe 35 miles. We're 12 miles from the OR border and about & from NV. We go

over the Fandango Pass(when it's passable, depending on our winters) to Lakeview

OR to do some shopping and Dad and Hubby's Dr. Lives there. And yes, I would

very much like a copy of the DVD. In fact I'd like two, in order to give Dr. G a

copy. Last time I saw him and was telling him I thought maybe hubby might have

LBD, he said he was getting a lot more patients with dementias. Can't help

wondering if it isn't something environmental. If you will send me an address,

I'll make a donation to the organization that's putting the DVDs out.

I didn't mention in my letter that my husband also has increased tremors when

he's deliberately working on something with his hands. Again, thank you so much

for the warm welcome. This is such an isolating disease, because even other

professionals don't understand what we're dealing with unless they're close to

someone with dementia. Three years after Mom passed away, my youngest brother,

55 dropped dead in his office from a heart attack and then our oldest dear

daughter was diagnosed with AIDs. A year ago as I was standing at the kitchen

sink I was just overcome with such a feeling of total exaustion and decided to

take my blood pressure. It was 248/146. I've taken care of patients who'd had

strokes with lower B/Ps than that! I got in to see a Dr the next day and was

asked what was going on in my life. When I listed the things, he said, 'I think

you're extremely depressed! " You know that never occurred to me, as I'd always

associated depression with tears and sorrow and

the feelings I had were more like anger as in " Knock it off and look for it

yourself! Try a little harder!! " with my husband? I've hated myself for these

inner reactions as I was given evaluations saying what a caring compassionate

nurse I was over the years but I sure didn't feel compassionate towards my

husband altho I usually didn't show it and I've felt such shame! I did have

feelings of hopelessness at times but in all this time I've not ever been able

to shed more than half a dozen tears, even when Mom and my Bro died. I guess

I've just shielded myself with a kind of numbness in order to keep on keeping

on. The Dr has me on Prozac, to keep a civil tongue and Xanax so I can sleep

longer than 2 hours and Benicar and Norvasc which has got my B/P under control.

I feel like a walking pharmacy. I sure hope they can find a cure in our

lifetime. Thanks again for your nice note. I tend to get long winded when I can

talk to another sane person who understands. I know you're

sane, I'm just not too sure of my own sanity. PS, if there's anything in this

ramble that might benefit some of the other folks, please feel free to share it.

All the best

Gayle A.

P.O. Box 69

Fort Bidwell, CA. 96112

Janet Colello wrote:

Welcome Gayle,

Where in NE CA do you live? Are you near the border of New Pine Creek OR? I

am in the San Francisco Bay Area in the East Bay.

" The Many Faces Of..... " and we in the group are sending them to all medical

professions and caregivers for a better understanding of Lewy Body. Please let

me know if you would like me to send you a DVD. There is also a lot of

information in the LBD group links and files. Scroll to the bottom of this page

and click on the blue type print for lbd groups.

Feel free to vent here anytime and ask questions. There is a lot of

information here.

Take Care.......Jan Colello

If at first you don't succeed, try, try again

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