Re: Lewy Body Dementia anne/sharon m

[Guest guest]

anne,

welcome to our family, i am so sorry you had to look us up but you have

found a family to be a part of. feel free to vent, scream, cry, yell,

laugh, share any thing you need to. we all understand as we have been going

thru the same now, have wnet thru it, or exepct to go thru it so you will

not be alone thru all this.

my dad was diag in may 2004, and passed away 9/25/05. he started with

hallucinations back in 93. he had visual hallucinations too. not long

after that unexplained falls started. he did ok on his own until

thanksgiving 2002 when he asked me and donnie to move in with him from

nashville to his house in pensacola. we moved down iwth him on jan 19, 2003

when we first moved down, dad had minor parkinsonian shakes, falls and

inablility to cook for himslef. for the first 9 months we lived here, we

could come and go as we pleased as long as we were home for supper and he

knew what time we would be home. we learned early on that never ever be late

it is better to tell dad a later time and be home early then to come home

and him be in a severe panic becuase we were late. we were late once and

poor dad was near hysterics. and whenever donnie went back to viist to tenn

we also found after the first trip or two, that we had to lie to dad so i

could keeep my sanity. dad would be convinced that donnie wasnt going to

come home, and for some reason he would get furious with me, and i mean

furious he would be very inappropriate yelling at me, he was acting and

treating me more like a angered pimp would treat a disobedient whore than a

dad would a daughter, it was very terrible. i was the only one he got that

angry with. he would scream so much at me that he would be hoarse the next

day. it was awful for both us, i cried when he treated me like this and

when he was over his dr jekyll, mr hyde routine, this group helped me to

realize that this was the disease talking and that wasnt my dad, and i was

also reminded that in life and in lbd too, we tend to hurt the ones we love

the most becuase love is supposed to be unconditional and loyal. there

were plenty of times that i cried to this group and was glad to know that

this lbd monster wasnt easily tamed nor was it going to be taking me and my

dad down without a fight.

there are no 'true' stages for lbd as in alzheimers. since lbd flluctuates

so much. and the lbd'ers bounce from good times to bad times and back

again repeatedly. my dad was walking by himself and was eating by himslef,

but he was stuffing his mouth in a hurry to eat his food, like someone was

threateing to take his food away from him, ( there are 3 people in the house

me, daddy and donnie, and 4 dogs and 3 cats at time. ) dad started hasving

more and nmore falls, and one time he had the parkinson shakes so bad he

couldnt talk, nor could he even eat as he couldnt get the fork to his mouth.

so i called the ER as he was haivng what i thought were stroke symptoms.

this was may2004. dad spent 3 weeks in the hosp 2.5 weeks in ICU trying

to determine why he was having these shaking spells and now he was losing

his abiliby to reason and carry on 'normal ' converstaions. a weekend fill

in doctor said after revieiwing my dad's chart that he susspected dad had

LBD, well i had my laptop wtih me and starteed researching this and the

symptroms described daddy to a T. dad went into the hosp walking came out

using a walker and unable to cut his own food anymore. dad was put on

exelon which seemed to slow down the progression and then namenda was added.

about that same time dad went from having high blood pressure to

orhtostatic bp was drops in bp from changing of position and walking. dads'

md decided to take daddy off the dementia meds. about this same time which

was may 2005, i became very sick and was hosp for a double kidney infection

as well as a severe intestinal twist/blockage. i was hosp for 5 weeks. july

5, dad feel very hard, we had the same doctor adn ddaddy refused to come to

the hosp although he needed to, so my doctor released me and i went home,

talked ot dad and saw that he couldnt move and called the amublance and he

was rushed to hosp. he had fractured the ball of his right hip socket and

needed immedicate surgery. so he was admitted adn had surgery per our

doctor's orders dad got a private room and i stayed with him so our doc

could keep an eye on both of us. this was the start of dad's demise. he

had the usual combative attitude post surgery agitation and issues, he

declined rapidly, he now needed to be fed, and he was unable to control his

urine and now his bowels. dad waspretty much bladder continent, but bowel

continence varied for about 4 monhts. dad went to a nursing home after

surgery and THANK GOD our caregiver sissy and my husband went to see him as

he was in severe respiratory distress. sissy called for a nurse to come

into the room and one tech came in and moved dads wheelchair out of the room

as it waws taking up too much of dad's airspace and she wanted to bring ina

fan to blow air into his face. well sissy yelled down the hall that 911

neded to be called as dad was dying. a nurse comes running in and calls 911.

dad not only had aspiration pneummonia but also a pulmonary embolyis (lung

blood clot). dad had to be ventilated (his choice) and was in icu for 13

days. he managed to pull thru this but was very very weak. i had taken to

anohter nursing home. this one was closer to home and much better. dad was

loved there by mnay of the employees. dad would smile big when some of the

workers would come in, you could tell that he enjoyed the people there. dad

was there for over 1 month when he had to be taken back to the hosp for

another apsiration pneumonia and a uti (urinary trach infection ) this

really drained him, he came back to that same nursing home and plans were

made to have him come home oct 5, as i had another vising in nashville

trying to get my health back on track.

my dad's 98 year old grandmoehter passed away the end of aug 05, and the nh

gave me a private area in which to tell dad, he handled it better than i

epxpected. . i sat with him for severa l hours that day but my health was

till pretty shaky. sissy donni e and i would alternate day s so dad would

have company every single day. the 3rd week of sept my kidney infection

caused me to have high fevers and i was trying everything to stay out of the

hosp. donnie was working full time and sissy was staying home with me

during the days to make sure i took care of myself adn to help me anyway

she could, then donnie or sissy would go visist daddy. sept 23 was donnie's

birthday i bought daddy a present to give donnie so ew went to see him, he

gave donnie his present as we sang happy birhtday to him * including daddy*

and it was a preciuos moment. the next day i was running fever and that

night daddy passed away. most people dont go as quick as daddy did, but you

never now. treat each good day as a special treat, and each good nite good

bye the final becase you never know. some linger for monhts or up to

ayear, otheres are like my daddy very quickly. i know this disease is ugly

and basically there are no rules, it does whatever it likes at whatever

pace it likes.

i hope this helps a little, good luck and hugs sharon m pensacola fl

Date: 01/02/06 14:25:32

To: LBDcaregivers

Subject: Lewy Body Dementia

Hi,

I have just joined the Lewy Body Dementia email support group. My name is

Anne Queenan and I have a sister, who has just turned 69, who is suffering

from LBD and is currently in a nursing home. I think she is in the fourth

stage of the disease, but I'm not sure what the fourth stage is. She is

very confused, doesn't really know her family, she knows faces but not names

She at times is very agitated and hardly eats. She is incontinent now and

is very afraid of everyone and everything. She does hallucinate. What I am

asking, is there anyone knows what stage this is. The doctor who visits the

home, by his own admission, doesn't know much about LBD, I just need some

help from a group who understands my family's stress.

Thank you for anything you can share.

Anne Queenan

[Guest guest]

Hi Sharon,

Thank you for sharing with me. You had an awful time of it, what with your own

health and your dad's lbd. That must have been a nightmare for you. I hope

your life is now back on track.

I feel my sister is " closing down " , and God forgive me, but I just want her to

pass away to be at peace. This is not a life for her, it's a mere existance.

She has been in a nursing home for six months now, but she should have been in a

home much sooner than that. Her husband was in a lot of denial, saying it was

the aging process, and she was only 67 at the time. His health wasn't good

either, he had a heart condition, but was so stubborn in his trying to hide how

ill my sister was, it was becoming a nightmare. My sister was waking in the

middle of the night and shouting and bawling at him and hallucinating, seeing

people that weren't there and accusing him of all kinds of things. Eventually,

he called my husband and I and said that he couldn't handle my sister anymore

and that she would have to be put in a home. This was done at great speed and

she was put in a home which none of us liked. Her name was on a waiting list

for a much nicer and more modern home. Unfortunately 10 days after my sister

was admitted to the home, her husband died. My sister to this day does not know

that her husband is dead, she doesn't retain anything for more than a few

minutes. We got her transferred just after that to the home she is in now. The

staff seem very kind to her, but I think she is a handful to manage. She is

very frightened of everything and just wanders the halls for hours at a time.

You can't have a conversation with her, she talks, but it is all garbled, she

cries quite a bit and eats very little. It has to be finger food now because

she doesn't understand knife and fork now and won't sit in the dining room. She

is incontinent, which makes it very difficult to get urine samples. She has had

urinary track infections at least three times in the last six months. Her whole

life is a mess now. She has gone from a very intelligent woman, very

independent and a beautiful dresser to this shell. It is just so horrible to

watch. Someone in the family goes to see her every day. She has one daughter,

who could use some siblings at the moment, but she is an only child, so myself

and my husband are her biggest support. My husband goes to the home every

evening at supper time, and I go three times a week at lunch time. If someone

was not there to supervise her eating, she would not eat at all. She will drink

all kinds of juices, gets the vitamin drinks, and loves ice cream. She is still

able to walk but her gait is getting quite unsteady at times, she has only

fallen once to my knowledge, but didn't seem to have any consequences of that.

There are days when I feel I am obsessing about her illness, but I can't seem to

be able to help myself. This whole disease is a nightmare and the family are

very stressed out. I just want her to be at peace and join her husband. They

had a very good marriage and her husband adored her. He certainly didn't have

it easy in his last year of life. My sister has had this disease for at least

five years now, but this last year there has been a rapid decline. We just have

to take this one day at a time and enjoy the days when her mood is good.

Thanks again Sharon for your email, I really appreciate your sharing with me.

You take care of your own health and I hope 2006 is good to you.

Anne

Lewy Body Dementia

Hi,

I have just joined the Lewy Body Dementia email support group. My name is

Anne Queenan and I have a sister, who has just turned 69, who is suffering

from LBD and is currently in a nursing home. I think she is in the fourth

stage of the disease, but I'm not sure what the fourth stage is. She is

very confused, doesn't really know her family, she knows faces but not names

She at times is very agitated and hardly eats. She is incontinent now and

is very afraid of everyone and everything. She does hallucinate. What I am

asking, is there anyone knows what stage this is. The doctor who visits the

home, by his own admission, doesn't know much about LBD, I just need some

help from a group who understands my family's stress.

Thank you for anything you can share.

Anne Queenan

[Guest guest]

anne,

happy 2006 toyou as well.

i am still bedridden as i wirte this with a twist in my intestines

somewhere we are trying everything to help but as of yet no luck, I was so

dehydrated friday that they missed 6 yes SIX iv attempts including twice in

the jugular in the neck, once on each side. but i am in better spirits and

doing fairly well justd biding time now.

second, there is nothing wrong with wishing peace to your sister, you are

right dshe is merely existing and it is not a pleasant thing for them or

for us. you are in no means being selfish, instead quite the opposite you

are being so loving and unselfish in wishing her peace. i am sorry your

brother in law had it so tough his last week and i can relate to your niece

as i too am an only child and if it wasnt for donnie my husband and sissy

our caregiver (again she is more like a daughter to me now since i wasnt

blessed with kids). it was very tough, my mom and da d divorced in 1988

and mom is very self centered so i know dad would have been in a nursing

home sinvce 93 when the hallucinations started. i respect you and your

husband for helping your neice, if she hasnt had the chance to thank you,

please know that she is very appreciateive of both of you helping her thru

these times. i know the good moments are few and far between but relish them

i saw quite a few of the others mentioned singing, singing songs always

relaxed dad, and i have a strange sense of humor, so i would make up wrods

to well known songs and dad would just laugh, like i love the color purple,

so instead of 'we all live in the yellow submarine' it was purple submarimne

and i would change other words and dad had this infant soudning giggle which

i just loved. so that would help out alot. donnie (5'10, 140 lbs soaking

wet) would jump up on dads hoslp bed and straddle over dad (6'3 200 lbs) and

would bear hug him under the arms and yank him up higher on the bed, donnie

would count one , oh boy, two, come on, and three lets go, and dad wwould

try so hard to help him and they usually got it first time, sometimes it

took 2 times but donnie wouled always be laughing with dad when they did it,

and they both would be giggling so hard when they were done, it could have

been horrible moments but with donnie's lightheartedness they both would

laugh. the only times daddy got upset when he was home and i coldnt help him

thru it was when he had movements in the bed or on the way to the boathroom,

more than once i was inititaed with poop but i would giggle at dad and say

oh well shit happens' dad would be very angry but i tried to lighten him up

i think it was non lbd embarassment along with his lbd uncontrollable

anger.

sing, dance, giggle all those help our loved ones with a little ray of

sunshine, pray for peace, i will be with you the whole step of the way.

hugs sharon

-- Re: Lewy Body Dementia anne/sharon m

Hi Sharon,

Thank you for sharing with me. You had an awful time of it, what with your

own health and your dad's lbd. That must have been a nightmare for you. I

hope your life is now back on track.

I feel my sister is " closing down " , and God forgive me, but I just want her

to pass away to be at peace. This is not a life for her, it's a mere

existance. She has been in a nursing home for six months now, but she

should have been in a home much sooner than that. Her husband was in a lot

of denial, saying it was the aging process, and she was only 67 at the time.

His health wasn't good either, he had a heart condition, but was so

stubborn in his trying to hide how ill my sister was, it was becoming a

nightmare. My sister was waking in the middle of the night and shouting and

bawling at him and hallucinating, seeing people that weren't there and

accusing him of all kinds of things. Eventually, he called my husband and I

and said that he couldn't handle my sister anymore and that she would have

to be put in a home. This was done at great speed and she was put in a home

which none of us liked. Her name was on a waiting list for a much nicer and

more modern home. Unfortunately 10 days after my sister was admitted to the

home, her husband died. My sister to this day does not know that her

husband is dead, she doesn't retain anything for more than a few minutes.

We got her transferred just after that to the home she is in now. The staff

seem very kind to her, but I think she is a handful to manage. She is very

frightened of everything and just wanders the halls for hours at a time.

You can't have a conversation with her, she talks, but it is all garbled,

she cries quite a bit and eats very little. It has to be finger food now

because she doesn't understand knife and fork now and won't sit in the

dining room. She is incontinent, which makes it very difficult to get urine

samples. She has had urinary track infections at least three times in the

last six months. Her whole life is a mess now. She has gone from a very

intelligent woman, very independent and a beautiful dresser to this shell.

It is just so horrible to watch. Someone in the family goes to see her

every day. She has one daughter, who could use some siblings at the moment,

but she is an only child, so myself and my husband are her biggest support.

My husband goes to the home every evening at supper time, and I go three

times a week at lunch time. If someone was not there to supervise her

eating, she would not eat at all. She will drink all kinds of juices, gets

the vitamin drinks, and loves ice cream. She is still able to walk but her

gait is getting quite unsteady at times, she has only fallen once to my

knowledge, but didn't seem to have any consequences of that.

There are days when I feel I am obsessing about her illness, but I can't

seem to be able to help myself. This whole disease is a nightmare and the

family are very stressed out. I just want her to be at peace and join her

husband. They had a very good marriage and her husband adored her. He

certainly didn't have it easy in his last year of life. My sister has had

this disease for at least five years now, but this last year there has been

a rapid decline. We just have to take this one day at a time and enjoy the

days when her mood is good.

Thanks again Sharon for your email, I really appreciate your sharing with me

You take care of your own health and I hope 2006 is good to you.

Anne

Lewy Body Dementia

Hi,

I have just joined the Lewy Body Dementia email support group. My name is

Anne Queenan and I have a sister, who has just turned 69, who is suffering

from LBD and is currently in a nursing home. I think she is in the fourth

stage of the disease, but I'm not sure what the fourth stage is. She is

very confused, doesn't really know her family, she knows faces but not

names

She at times is very agitated and hardly eats. She is incontinent now

and

is very afraid of everyone and everything. She does hallucinate. What I

am

asking, is there anyone knows what stage this is. The doctor who visits

the

home, by his own admission, doesn't know much about LBD, I just need some

help from a group who understands my family's stress.

Thank you for anything you can share.

Anne Queenan

[Guest guest]

Hi Sharon,

Glad to hear from you again. I have three of my grandchildren with me today and

they are staying overnight. I have twin granddaughters age 9 and a little

grandson who is just 19 months, so as you can see, I have my hands full today.

I also have a granddaughter in Comox, B.C., that's where my son is, the other

three belong to my daughter. My son and his wife are due their second child at

the end of February/beginning of March, so my husband and myself will be going

out there once the baby is born. That is a distraction I definitely need at the

moment.

My husband went up to the home this evening because I usually go on a Tuesday

but with me having the kids, I didn't make it today. My niece was up to see

her mum yesterday, but she was very agitated with her. She seems to get really

angry with her daughter now, which is a real shame, because they had a very good

relationship. My niece knows this is not her mum talking, this is the disease,

but I'm sure it still must hurt her. She is ver appreciative of all that we

help her with and her husband is very good. Unfortunately, they don't have any

children, it just never happened, so she is quite immersed in looking after her

mother.

You took great care of your dad and your husband sounds as though he was a real

gem. It is so nice when families come together at times like this.

My grandchildren are bugging me about something, so I will have to make this

short. I really hope your health improves, what a time you've had, you really

deserve a break.

I hope things improve very early in 2006 for you, and you have a good, peaceful

year. I will chat with you again whenever I get a chance.

Take care and thanks for your support.

Love. Anne

Lewy Body Dementia

Hi,

I have just joined the Lewy Body Dementia email support group. My name is

Anne Queenan and I have a sister, who has just turned 69, who is suffering

from LBD and is currently in a nursing home. I think she is in the fourth

stage of the disease, but I'm not sure what the fourth stage is. She is

very confused, doesn't really know her family, she knows faces but not

names

She at times is very agitated and hardly eats. She is incontinent now

and

is very afraid of everyone and everything. She does hallucinate. What I

am

asking, is there anyone knows what stage this is. The doctor who visits

the

home, by his own admission, doesn't know much about LBD, I just need some

help from a group who understands my family's stress.

Thank you for anything you can share.

Anne Queenan

[Guest guest]

Hi Sharon

Is the bowel incontinence an early and frequent problem with LBD?

My Mom was just diagnosed this fall and is already incontinent of

bowel. At first we thought it was the meds and cut them back and

stopped Aricept all together but the incontience remained. We put

her back on her Aricept due to the worsening of her LBD symptoms of

confusion, falling, etc.

Kathy

>

>

> anne,

>

> welcome to our family, i am so sorry you had to look us up but you

have

> found a family to be a part of. feel free to vent, scream, cry,

yell,

> laugh, share any thing you need to. we all understand as we have

been going

> thru the same now, have wnet thru it, or exepct to go thru it so

you will

> not be alone thru all this.

> my dad was diag in may 2004, and passed away 9/25/05. he started

with

> hallucinations back in 93. he had visual hallucinations too. not

long

> after that unexplained falls started. he did ok on his own until

> thanksgiving 2002 when he asked me and donnie to move in with him

from

> nashville to his house in pensacola. we moved down iwth him on

jan 19, 2003

> when we first moved down, dad had minor parkinsonian shakes,

falls and

> inablility to cook for himslef. for the first 9 months we lived

here, we

> could come and go as we pleased as long as we were home for supper

and he

> knew what time we would be home. we learned early on that never

ever be late

> it is better to tell dad a later time and be home early then to

come home

> and him be in a severe panic becuase we were late. we were late

once and

> poor dad was near hysterics. and whenever donnie went back to

viist to tenn

> we also found after the first trip or two, that we had to lie to

dad so i

> could keeep my sanity. dad would be convinced that donnie wasnt

going to

> come home, and for some reason he would get furious with me, and i

mean

> furious he would be very inappropriate yelling at me, he was

acting and

> treating me more like a angered pimp would treat a disobedient

whore than a

> dad would a daughter, it was very terrible. i was the only one he

got that

> angry with. he would scream so much at me that he would be hoarse

the next

> day. it was awful for both us, i cried when he treated me like

this and

> when he was over his dr jekyll, mr hyde routine, this group

helped me to

> realize that this was the disease talking and that wasnt my dad,

and i was

> also reminded that in life and in lbd too, we tend to hurt the

ones we love

> the most becuase love is supposed to be unconditional and loyal.

there

> were plenty of times that i cried to this group and was glad to

know that

> this lbd monster wasnt easily tamed nor was it going to be taking

me and my

> dad down without a fight.

>

> there are no 'true' stages for lbd as in alzheimers. since lbd

flluctuates

> so much. and the lbd'ers bounce from good times to bad times and

back

> again repeatedly. my dad was walking by himself and was eating by

himslef,

> but he was stuffing his mouth in a hurry to eat his food, like

someone was

> threateing to take his food away from him, ( there are 3 people in

the house

> me, daddy and donnie, and 4 dogs and 3 cats at time. ) dad

started hasving

> more and nmore falls, and one time he had the parkinson shakes so

bad he

> couldnt talk, nor could he even eat as he couldnt get the fork to

his mouth.

> so i called the ER as he was haivng what i thought were stroke

symptoms.

> this was may2004. dad spent 3 weeks in the hosp 2.5 weeks in

ICU trying

> to determine why he was having these shaking spells and now he was

losing

> his abiliby to reason and carry on 'normal ' converstaions. a

weekend fill

> in doctor said after revieiwing my dad's chart that he susspected

dad had

> LBD, well i had my laptop wtih me and starteed researching this

and the

> symptroms described daddy to a T. dad went into the hosp walking

came out

> using a walker and unable to cut his own food anymore. dad was

put on

> exelon which seemed to slow down the progression and then namenda

was added.

> about that same time dad went from having high blood pressure to

> orhtostatic bp was drops in bp from changing of position and

walking. dads'

> md decided to take daddy off the dementia meds. about this same

time which

> was may 2005, i became very sick and was hosp for a double kidney

infection

> as well as a severe intestinal twist/blockage. i was hosp for 5

weeks. july

> 5, dad feel very hard, we had the same doctor adn ddaddy refused

to come to

> the hosp although he needed to, so my doctor released me and i

went home,

> talked ot dad and saw that he couldnt move and called the

amublance and he

> was rushed to hosp. he had fractured the ball of his right hip

socket and

> needed immedicate surgery. so he was admitted adn had surgery per

our

> doctor's orders dad got a private room and i stayed with him so

our doc

> could keep an eye on both of us. this was the start of dad's

demise. he

> had the usual combative attitude post surgery agitation and

issues, he

> declined rapidly, he now needed to be fed, and he was unable to

control his

> urine and now his bowels. dad waspretty much bladder continent,

but bowel

> continence varied for about 4 monhts. dad went to a nursing home

after

> surgery and THANK GOD our caregiver sissy and my husband went to

see him as

> he was in severe respiratory distress. sissy called for a nurse

to come

> into the room and one tech came in and moved dads wheelchair out

of the room

> as it waws taking up too much of dad's airspace and she wanted to

bring ina

> fan to blow air into his face. well sissy yelled down the hall

that 911

> neded to be called as dad was dying. a nurse comes running in and

calls 911.

> dad not only had aspiration pneummonia but also a pulmonary

embolyis (lung

> blood clot). dad had to be ventilated (his choice) and was in icu

for 13

> days. he managed to pull thru this but was very very weak. i had

taken to

> anohter nursing home. this one was closer to home and much

better. dad was

> loved there by mnay of the employees. dad would smile big when

some of the

> workers would come in, you could tell that he enjoyed the people

there. dad

> was there for over 1 month when he had to be taken back to the

hosp for

> another apsiration pneumonia and a uti (urinary trach infection )

this

> really drained him, he came back to that same nursing home and

plans were

> made to have him come home oct 5, as i had another vising in

nashville

> trying to get my health back on track.

>

> my dad's 98 year old grandmoehter passed away the end of aug 05,

and the nh

> gave me a private area in which to tell dad, he handled it better

than i

> epxpected. . i sat with him for severa l hours that day but my

health was

> till pretty shaky. sissy donni e and i would alternate day s so

dad would

> have company every single day. the 3rd week of sept my kidney

infection

> caused me to have high fevers and i was trying everything to stay

out of the

> hosp. donnie was working full time and sissy was staying home

with me

> during the days to make sure i took care of myself adn to help me

anyway

> she could, then donnie or sissy would go visist daddy. sept 23

was donnie's

> birthday i bought daddy a present to give donnie so ew went to see

him, he

> gave donnie his present as we sang happy birhtday to him *

including daddy*

> and it was a preciuos moment. the next day i was running fever

and that

> night daddy passed away. most people dont go as quick as daddy

did, but you

> never now. treat each good day as a special treat, and each good

nite good

> bye the final becase you never know. some linger for monhts or

up to

> ayear, otheres are like my daddy very quickly. i know this

disease is ugly

> and basically there are no rules, it does whatever it likes at

whatever

> pace it likes.

> i hope this helps a little, good luck and hugs sharon m

pensacola fl

> Date: 01/02/06 14:25:32

> To: LBDcaregivers

> Subject: Lewy Body Dementia

>

> Hi,

>

> I have just joined the Lewy Body Dementia email support group. My

name is

> Anne Queenan and I have a sister, who has just turned 69, who is

suffering

> from LBD and is currently in a nursing home. I think she is in

the fourth

> stage of the disease, but I'm not sure what the fourth stage is.

She is

> very confused, doesn't really know her family, she knows faces but

not names

> She at times is very agitated and hardly eats. She is

incontinent now and

> is very afraid of everyone and everything. She does hallucinate.

What I am

> asking, is there anyone knows what stage this is. The doctor who

visits the

> home, by his own admission, doesn't know much about LBD, I just

need some

> help from a group who understands my family's stress.

>

> Thank you for anything you can share.

>

> Anne Queenan

>

>

[Guest guest]

anne

you enjoy those grandbabies, i also was never blessed with children of my

own, but we are going to check into becoming foster parents soon. sa there

are many children in this world that need love and we certaninly have enough

to share. tell your niece something that was told to me by a very kind nurse

in teh hospital wehn dad was having one of his dr jekyll mr hyde routines.

it was the weekend of hurricane dennis so i couldnt leave the hosp once you

were in you were in PERIOD. so i had no escape other than places where

there were others people stuck too. dad was hateful to me, very hateful,

acted like my pimp insteadof my dad, was very sexually explicit in his words

to me etc, it was very very hard for me, i left the room in tears, trying

not to scream at him, this nurse who was prob not more than 20 who is so

wise beyound her years, took me to the nurses break room, closed the door

and sat and talked iwth me for about 30 minutes, oneof the bits of wisdom

she siad was, we always hurt the ones we love the nmost but she said you

hear that all your life, but when someone with dementia is scared adn

frightened and angry they dont understand it at all, and yet a part of their

mind sees you, the one they love and knows that they are loved adn feel

safe' with, they yell and scream at teh most, becuase a part of them deep

down know that this person loves them no matter what and it is 'safe' to

show their emotions and fears even if they are irrational' she left me

shortly after saying that, but i thought about it for a long time befofe i

gathered my thoughts and went back to dads room. after taht i realzied that

her words of wisdom meant that in some strange and yes ugly way, taht was

dads way of saying he loved me, becuase he knew i would be there no matter

waht, the words still hurt but not as bad sa they did before i heard those

words of wisdon. thought i would pass them on . hugs sharon

-- Re: Lewy Body Dementia anne/sharon m

Hi Sharon,

Glad to hear from you again. I have three of my grandchildren with me today

and they are staying overnight. I have twin granddaughters age 9 and a

little grandson who is just 19 months, so as you can see, I have my hands

full today. I also have a granddaughter in Comox, B.C., that's where my son

is, the other three belong to my daughter. My son and his wife are due

their second child at the end of February/beginning of March, so my husband

and myself will be going out there once the baby is born. That is a

distraction I definitely need at the moment.

My husband went up to the home this evening because I usually go on a

Tuesday but with me having the kids, I didn't make it today. My niece was

up to see her mum yesterday, but she was very agitated with her. She seems

to get really angry with her daughter now, which is a real shame, because

they had a very good relationship. My niece knows this is not her mum

talking, this is the disease, but I'm sure it still must hurt her. She is

ver appreciative of all that we help her with and her husband is very good.

Unfortunately, they don't have any children, it just never happened, so she

is quite immersed in looking after her mother.

You took great care of your dad and your husband sounds as though he was a

real gem. It is so nice when families come together at times like this.

My grandchildren are bugging me about something, so I will have to make this

short. I really hope your health improves, what a time you've had, you

really deserve a break.

I hope things improve very early in 2006 for you, and you have a good,

peaceful year. I will chat with you again whenever I get a chance.

Take care and thanks for your support.

Love. Anne

Lewy Body Dementia

Hi,

I have just joined the Lewy Body Dementia email support group. My name

is

Anne Queenan and I have a sister, who has just turned 69, who is

suffering

from LBD and is currently in a nursing home. I think she is in the

fourth

stage of the disease, but I'm not sure what the fourth stage is. She is

very confused, doesn't really know her family, she knows faces but not

names

She at times is very agitated and hardly eats. She is incontinent now

and

is very afraid of everyone and everything. She does hallucinate. What

I

am

asking, is there anyone knows what stage this is. The doctor who visits

the

home, by his own admission, doesn't know much about LBD, I just need

some

help from a group who understands my family's stress.

Thank you for anything you can share.

Anne Queenan

[Guest guest]

kathy,

i think so, part of it is becuase dads brain couldnt register enough

warning ' to him that he had to have a movement, and then when the brain did

send the warning, we had to come form other room, get him to stand up,

achieve his balance walk into the bathroom, he refused to use a bedside

commode. so by the time all of this was done, it was too late, he either

pooped in the bed, on the way to the bathroom, on the floor , even on me.

this was a good part of the reason dad had to stay in the nh for so long

post hip operatoin as i was trying to find help to help sissy donnie and

myself as i coouldnt help lift and move dad as i have a 10lb weight

restriction due to my urostomy. this was dads greatest embarassment, but i

saw that he was more relaxed having strangers (meaning non family) clean his

messes than us, i think he wasnt sa embarassed as they were not related.

dad was urine incontinett but mostly at night, as he would sleep thru it,.

we t hought is was exelon and namenda that was making dad incontinent but he

had no stomach distress, cramps, pains, etc, just didnt know he had to go,

hugs sharon m

-- Lewy Body Dementia

>

> Hi,

>

> I have just joined the Lewy Body Dementia email support group. My

name is

> Anne Queenan and I have a sister, who has just turned 69, who is

suffering

> from LBD and is currently in a nursing home. I think she is in

the fourth

> stage of the disease, but I'm not sure what the fourth stage is.

She is

> very confused, doesn't really know her family, she knows faces but

not names

> She at times is very agitated and hardly eats. She is

incontinent now and

> is very afraid of everyone and everything. She does hallucinate.

What I am

> asking, is there anyone knows what stage this is. The doctor who

visits the

> home, by his own admission, doesn't know much about LBD, I just

need some

> help from a group who understands my family's stress.

>

> Thank you for anything you can share.

>

> Anne Queenan

>

>