Alice is gone..what the end is like

[Guest guest]

Dear Tom, Thank you so much for taking the time to add more knowledge to

this board for the Caregivers that will pass that way. May you find the well

deserved Peace within and be comforted in knowing that your Mother is now at

Peace too. Bless you for setting your life aside to care for your Mom, Stevie

Stevie in So. California

LO - Mr. B (Uncle) 82 yrs.

Lives in my home - 3 yrs.

DX Parkinson's 1993

DX LBD 2003 - probably has PDD

End stage meds: Hytrin, E.S Tylenol (Hallies have subsided) ...but have

started up again.

Was on: Sinemet, Seroguel, Elavil, Lasix, Hytrin, Roxinal, Aciphex,

Amitriptyline

Was given Ativan and Seroquel in NH for 5 days (Jan '06), hasn't been the

same since

Daily BP usually 68/52

Severe shoulder pain, hip pain, and shortness of breath.

Now taking Trilisate Liquid for pain - seems to be working

UTI since 4/7 not getting any better - took Bactrim

Sleeping most of the day, breathing becoming an issue, asking for oxygen

daily.

Got a Living Trust years before he became too ill.

* * * * * * *

To All....this Tuesday afternoon my mother (Iron) Alice passed away of

LBD....the past 6 weeks of hospice as we went thru withdrawing her meds.....then

she

was bedridden the last 5 weeks....no nourishment at all (liquid breakfast

drinks or other) for the last 26 days.......the most fluid she got down in a day

the last 5 weeks was eleven ounces....the past week, 2 or 3 oz.....then sips

and then not able to have any the last three days......all the while her Lewy

Body damaged brain would not let her body shut off.....she could answer one

word answers at times but the past week no communication...she went from about

95

lbs to less than 60.....the last two days were brutal ....especially the last

hours...the liquid tylenol with codeine was not keeping her comfortable

anymore and she could not handle the quantity req.'d....so the last two days we

went to morphine to gain her some comfort and slow her system...this is usually

used with ativan at end of life to slow the heart and breathing for comfort but

in my mothers life ativan only made her system work harder, so we tried one

dose of lorzepam which was bad and then tried and succeeded for a day with

atarax and that was better but she could not swallow it in liquid form

anymore......finally in the last hours the heart rate was 146 or more and the BP

dropped.....but it was not a comfortable passing for her....all involved tried

their

best and tried to come up with alternatives but were at a loss.......I was

lucky to stop back to the house to be there and prayed as the paid caregivers

(one

stayed over on her time to be there) held her hands and did their best ,

amazingly it was her favorites...we have been at this two years and a

month.....also the past 4 weeks Mom had distanced herself from me shortly after

I brought

in the priest for Last Rites.....at that point the look on her face told me

she had no real idea in her dementia she was dying..though days previous she had

stated she was going with someone when they came for her..she really did not

seem aware of laying in bed and sleeping 22 hour of a day.....Mom had no

complicating illnesses to weaken her body to shorten this.process.....her mind

would not let her body rest till there was nothing left....Alice was 12 days

short

of being 89 or 90 depending on which church or state record you

believe.........

So many of you want to know the end...death as life is individual....

.I still know it was right to stop all meds as her deteriorating

swallowing ability dictated...her quality of life was also gone.....all her

caregivers

and I were near our individual limits.....(I with Mom(till she became a

problem in late 03) cared for Dad with Parkinsons then lung cancer for 5 years

before he died in 1 - 2004) then two months later Mom became 24/7 care with

LBD(Diagnosed 11/04) (symptoms started in 00 but no one could put a name to it

but

vascular dementia)......Nature and LBD took their course but the human body can

stand an incredible amount if there is no complicating disease......her

funeral is Friday....then I get the joy of sharing what's left with those who I

will

call my EX brother and EX sister who's lives did not change during Mom and

Dad's illness......I cannot look at this board much longer....it is painfull....

tho I did not often interject (as there seem to be plenty of people with more

time and faster typing skills)....I did learn a bit from some of the posts

but there are so many off topic......I will direct donations to the LBD

Associationa as their website saved my sanity before Mom was diagnosed....Thank

you

all for what help I got and just to know we are not all NUTS reporting our loved

ones fluctuations in symptoms...I will miss my mother but not the rigors of

her care.....it was time for an end....Tom Guggenbiller

[Guest guest]

My deepest sympathies go out to you, Tom. May peace be with you, as your

Mother is finally at peace. Thank you for letting the rest of us know.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has AD and

possibly LBD, is Taking Aricept and Risperdal. Age 72 in May.

In a message dated 4/19/2006 9:05:06 PM Central Daylight Time,

tgug@... writes:

To All....this Tuesday afternoon my mother (Iron) Alice passed away of

LBD....the past 6 weeks of hospice as we went thru withdrawing her

meds.....then

she was bedridden the last 5 weeks....no nourishment at all (liquid breakfast

drinks or other) for the last 26 days.......the most fluid she got down in a

day the last 5 weeks was eleven ounces....the past week, 2 or 3 oz.....then

sips and then not able to have any the last three days......all the while her

Lewy Body damaged brain would not let her body shut off.....she could answer

one word answers at times but the past week no communication...she went from

about 95 lbs to less than 60.....the last two days were brutal ....especially

the last hours...the liquid tylenol with codeine was not keeping her

comfortable anymore and she could not handle the quantity req.'d....so the last

two

days we went to morphine to gain her some comfort and slow her system...this

is usually used with ativan at end of life to slow the heart and breathing

for comfort but in my mothers life ativan only made her system work harder, so

we tried one dose of lorzepam which was bad and then tried and succeeded for

a day with atarax and that was better but she could not swallow it in liquid

form anymore......finally in the last hours the heart rate was 146 or more

and the BP dropped.....but it was not a comfortable passing for her....all

involved tried their best and tried to come up with alternatives but were at a

loss.......I was lucky to stop back to the house to be there and prayed as the

paid caregivers (one stayed over on her time to be there) held her hands and

did their best , amazingly it was her favorites...we have been at this two

years and a month.....also the past 4 weeks Mom had distanced herself from me

shortly after I brought in the priest for Last Rites.....at that point the

look on her face told me she had no real idea in her dementia she was

dying..though days previous she had stated she was going with someone when they

came

for her..she really did not seem aware of laying in bed and sleeping 22 hour

of a day.....Mom had no complicating illnesses to weaken her body to shorten

this.process.....her mind would not let her body rest till there was nothing

left....Alice was 12 days short of being 89 or 90 depending on which church or

state record you believe.........

So many of you want to know the end...death as life is individual....

..I still know it was right to stop all meds as her deteriorating swallowing

ability dictated...her quality of life was also gone.....all her caregivers

and I were near our individual limits.....(I with Mom(till she became a

problem in late 03) cared for Dad with Parkinsons then lung cancer for 5 years

before he died in 1 - 2004) then two months later Mom became 24/7 care with

LBD(Diagnosed 11/04) (symptoms started in 00 but no one could put a name to it

but

vascular dementia)......Nature and LBD took their course but the human body

can stand an incredible amount if there is no complicating disease......her

funeral is Friday....then I get the joy of sharing what's left with those who

I will call my EX brother and EX sister who's lives did not change during Mom

and Dad's illness......I cannot look at this board much longer....it is

painfull.... tho I did not often interject (as there seem to be plenty of

people

with more time and faster typing skills)....I did learn a bit from some of

the posts but there are so many off topic......I will direct donations to the

LBD Associationa as their website saved my sanity before Mom was

diagnosed....Thank you all for what help I got and just to know we are not all

NUTS

reporting our loved ones fluctuations in symptoms...I will miss my mother but

not

the rigors of her care.....it was time for an end....Tom Guggenbiller

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

Welcome to LBDcaregivers.

[Guest guest]

To All....this Tuesday afternoon my mother (Iron) Alice passed away of

LBD....the past 6 weeks of hospice as we went thru withdrawing her meds.....then

she was bedridden the last 5 weeks....no nourishment at all (liquid breakfast

drinks or other) for the last 26 days.......the most fluid she got down in a day

the last 5 weeks was eleven ounces....the past week, 2 or 3 oz.....then sips and

then not able to have any the last three days......all the while her Lewy Body

damaged brain would not let her body shut off.....she could answer one word

answers at times but the past week no communication...she went from about 95 lbs

to less than 60.....the last two days were brutal ....especially the last

hours...the liquid tylenol with codeine was not keeping her comfortable anymore

and she could not handle the quantity req.'d....so the last two days we went to

morphine to gain her some comfort and slow her system...this is usually used

with ativan at end of life to slow the heart and breathing for comfort but in my

mothers life ativan only made her system work harder, so we tried one dose of

lorzepam which was bad and then tried and succeeded for a day with atarax and

that was better but she could not swallow it in liquid form anymore......finally

in the last hours the heart rate was 146 or more and the BP dropped.....but it

was not a comfortable passing for her....all involved tried their best and tried

to come up with alternatives but were at a loss.......I was lucky to stop back

to the house to be there and prayed as the paid caregivers (one stayed over on

her time to be there) held her hands and did their best , amazingly it was her

favorites...we have been at this two years and a month.....also the past 4 weeks

Mom had distanced herself from me shortly after I brought in the priest for Last

Rites.....at that point the look on her face told me she had no real idea in her

dementia she was dying..though days previous she had stated she was going with

someone when they came for her..she really did not seem aware of laying in bed

and sleeping 22 hour of a day.....Mom had no complicating illnesses to weaken

her body to shorten this.process.....her mind would not let her body rest till

there was nothing left....Alice was 12 days short of being 89 or 90 depending on

which church or state record you believe.........

So many of you want to know the end...death as life is individual....

.I still know it was right to stop all meds as her deteriorating swallowing

ability dictated...her quality of life was also gone.....all her caregivers and

I were near our individual limits.....(I with Mom(till she became a problem in

late 03) cared for Dad with Parkinsons then lung cancer for 5 years before he

died in 1 - 2004) then two months later Mom became 24/7 care with LBD(Diagnosed

11/04) (symptoms started in 00 but no one could put a name to it but vascular

dementia)......Nature and LBD took their course but the human body can stand an

incredible amount if there is no complicating disease......her funeral is

Friday....then I get the joy of sharing what's left with those who I will call

my EX brother and EX sister who's lives did not change during Mom and Dad's

illness......I cannot look at this board much longer....it is painfull.... tho I

did not often interject (as there seem to be plenty of people with more time and

faster typing skills)....I did learn a bit from some of the posts but there are

so many off topic......I will direct donations to the LBD Associationa as their

website saved my sanity before Mom was diagnosed....Thank you all for what help

I got and just to know we are not all NUTS reporting our loved ones fluctuations

in symptoms...I will miss my mother but not the rigors of her care.....it was

time for an end....Tom Guggenbiller

[Guest guest]

Tom

My condolences to you. You sound exhausted.

, borough, ON

>

> To All....this Tuesday afternoon my mother (Iron) Alice passed away

of LBD....the past 6 weeks of hospice as we went thru withdrawing her

meds.....then she was bedridden the last 5 weeks....no nourishment at

all (liquid breakfast drinks or other) for the last 26 days.......the

most fluid she got down in a day the last 5 weeks was eleven

ounces....the past week, 2 or 3 oz.....then sips and then not able to

have any the last three days......all the while her Lewy Body damaged

brain would not let her body shut off.....she could answer one word

answers at times but the past week no communication...she went from

about 95 lbs to less than 60.....the last two days were

brutal ....especially the last hours...the liquid tylenol with

codeine was not keeping her comfortable anymore and she could not

handle the quantity req.'d....so the last two days we went to

morphine to gain her some comfort and slow her system...this is

usually used with ativan at end of life to slow the heart and

breathing for comfort but in my mothers life ativan only made her

system work harder, so we tried one dose of lorzepam which was bad

and then tried and succeeded for a day with atarax and that was

better but she could not swallow it in liquid form

anymore......finally in the last hours the heart rate was 146 or more

and the BP dropped.....but it was not a comfortable passing for

her....all involved tried their best and tried to come up with

alternatives but were at a loss.......I was lucky to stop back to the

house to be there and prayed as the paid caregivers (one stayed over

on her time to be there) held her hands and did their best ,

amazingly it was her favorites...we have been at this two years and a

month.....also the past 4 weeks Mom had distanced herself from me

shortly after I brought in the priest for Last Rites.....at that

point the look on her face told me she had no real idea in her

dementia she was dying..though days previous she had stated she was

going with someone when they came for her..she really did not seem

aware of laying in bed and sleeping 22 hour of a day.....Mom had no

complicating illnesses to weaken her body to shorten

this.process.....her mind would not let her body rest till there was

nothing left....Alice was 12 days short of being 89 or 90 depending

on which church or state record you believe.........

>

> So many of you want to know the end...death as life is

individual....

>

>

> .I still know it was right to stop all meds as her deteriorating

swallowing ability dictated...her quality of life was also

gone.....all her caregivers and I were near our individual limits.....

(I with Mom(till she became a problem in late 03) cared for Dad with

Parkinsons then lung cancer for 5 years before he died in 1 - 2004)

then two months later Mom became 24/7 care with LBD(Diagnosed 11/04)

(symptoms started in 00 but no one could put a name to it but

vascular dementia)......Nature and LBD took their course but the

human body can stand an incredible amount if there is no complicating

disease......her funeral is Friday....then I get the joy of sharing

what's left with those who I will call my EX brother and EX sister

who's lives did not change during Mom and Dad's illness......I cannot

look at this board much longer....it is painfull.... tho I did not

often interject (as there seem to be plenty of people with more time

and faster typing skills)....I did learn a bit from some of the posts

but there are so many off topic......I will direct donations to the

LBD Associationa as their website saved my sanity before Mom was

diagnosed....Thank you all for what help I got and just to know we

are not all NUTS reporting our loved ones fluctuations in

symptoms...I will miss my mother but not the rigors of her

care.....it was time for an end....Tom Guggenbiller

>

>

[Guest guest]

tom, i am sorry to hear that your mom is gone, but i am grateful that she is no

longer tormented by the evils of lbd. i am a firm believer that those we love

become our own personal guardian angels. may you find comfort and my prayers and

strength are coming your way. hugs sharon m

Date: 2006/04/19 Wed PM 10:04:48 EDT

To: <LBDcaregivers >

Subject: Alice is gone..what the end is like

To All....this Tuesday afternoon my mother (Iron) Alice passed away of

LBD....the past 6 weeks of hospice as we went thru withdrawing her meds.....then

she was bedridden the last 5 weeks....no nourishment at all (liquid breakfast

drinks or other) for the last 26 days.......the most fluid she got down in a day

the last 5 weeks was eleven ounces....the past week, 2 or 3 oz.....then sips and

then not able to have any the last three days......all the while her Lewy Body

damaged brain would not let her body shut off.....she could answer one word

answers at times but the past week no communication...she went from about 95 lbs

to less than 60.....the last two days were brutal ....especially the last

hours...the liquid tylenol with codeine was not keeping her comfortable anymore

and she could not handle the quantity req.'d....so the last two days we went to

morphine to gain her some comfort and slow her system...this is usually used

with ativan at end of life to slow the heart and breathing for comfort but in my

mothers life ativan only made her system work harder, so we tried one dose of

lorzepam which was bad and then tried and succeeded for a day with atarax and

that was better but she could not swallow it in liquid form anymore......finally

in the last hours the heart rate was 146 or more and the BP dropped.....but it

was not a comfortable passing for her....all involved tried their best and tried

to come up with alternatives but were at a loss.......I was lucky to stop back

to the house to be there and prayed as the paid caregivers (one stayed over on

her time to be there) held her hands and did their best , amazingly it was her

favorites...we have been at this two years and a month.....also the past 4 weeks

Mom had distanced herself from me shortly after I brought in the priest for Last

Rites.....at that point the look on her face told me she had no real idea in her

dementia she was dying..though days previous she had stated she was going with

someone when they came for her..she really did not seem aware of laying in bed

and sleeping 22 hour of a day.....Mom had no complicating illnesses to weaken

her body to shorten this.process.....her mind would not let her body rest till

there was nothing left....Alice was 12 days short of being 89 or 90 depending on

which church or state record you believe.........

So many of you want to know the end...death as life is individual....

.I still know it was right to stop all meds as her deteriorating swallowing

ability dictated...her quality of life was also gone.....all her caregivers and

I were near our individual limits.....(I with Mom(till she became a problem in

late 03) cared for Dad with Parkinsons then lung cancer for 5 years before he

died in 1 - 2004) then two months later Mom became 24/7 care with LBD(Diagnosed

11/04) (symptoms started in 00 but no one could put a name to it but vascular

dementia)......Nature and LBD took their course but the human body can stand an

incredible amount if there is no complicating disease......her funeral is

Friday....then I get the joy of sharing what's left with those who I will call

my EX brother and EX sister who's lives did not change during Mom and Dad's

illness......I cannot look at this board much longer....it is painfull.... tho I

did not often interject (as there seem to be plenty of people with more time and

faster typing skills)....I did learn a bit from some of the posts but there are

so many off topic......I will direct donations to the LBD Associationa as their

website saved my sanity before Mom was diagnosed....Thank you all for what help

I got and just to know we are not all NUTS reporting our loved ones fluctuations

in symptoms...I will miss my mother but not the rigors of her care.....it was

time for an end....Tom Guggenbiller

[Guest guest]

Tom... My sympathy to you and your family , you mom is now with God bless

you all .... Eileen Ontario, Canada

-- Re: Alice is gone..what the end is like

Tom

My condolences to you. You sound exhausted.

, borough, ON

>

> To All....this Tuesday afternoon my mother (Iron) Alice passed away

of LBD....the past 6 weeks of hospice as we went thru withdrawing her

meds.....then she was bedridden the last 5 weeks....no nourishment at

all (liquid breakfast drinks or other) for the last 26 days.......the

most fluid she got down in a day the last 5 weeks was eleven

ounces....the past week, 2 or 3 oz.....then sips and then not able to

have any the last three days......all the while her Lewy Body damaged

brain would not let her body shut off.....she could answer one word

answers at times but the past week no communication...she went from

about 95 lbs to less than 60.....the last two days were

brutal ....especially the last hours...the liquid tylenol with

codeine was not keeping her comfortable anymore and she could not

handle the quantity req.'d....so the last two days we went to

morphine to gain her some comfort and slow her system...this is

usually used with ativan at end of life to slow the heart and

breathing for comfort but in my mothers life ativan only made her

system work harder, so we tried one dose of lorzepam which was bad

and then tried and succeeded for a day with atarax and that was

better but she could not swallow it in liquid form

anymore......finally in the last hours the heart rate was 146 or more

and the BP dropped.....but it was not a comfortable passing for

her....all involved tried their best and tried to come up with

alternatives but were at a loss.......I was lucky to stop back to the

house to be there and prayed as the paid caregivers (one stayed over

on her time to be there) held her hands and did their best ,

amazingly it was her favorites...we have been at this two years and a

month.....also the past 4 weeks Mom had distanced herself from me

shortly after I brought in the priest for Last Rites.....at that

point the look on her face told me she had no real idea in her

dementia she was dying..though days previous she had stated she was

going with someone when they came for her..she really did not seem

aware of laying in bed and sleeping 22 hour of a day.....Mom had no

complicating illnesses to weaken her body to shorten

this.process.....her mind would not let her body rest till there was

nothing left....Alice was 12 days short of being 89 or 90 depending

on which church or state record you believe.........

>

> So many of you want to know the end...death as life is

individual....

>

>

> .I still know it was right to stop all meds as her deteriorating

swallowing ability dictated...her quality of life was also

gone.....all her caregivers and I were near our individual limits.....

(I with Mom(till she became a problem in late 03) cared for Dad with

Parkinsons then lung cancer for 5 years before he died in 1 - 2004)

then two months later Mom became 24/7 care with LBD(Diagnosed 11/04)

(symptoms started in 00 but no one could put a name to it but

vascular dementia)......Nature and LBD took their course but the

human body can stand an incredible amount if there is no complicating

disease......her funeral is Friday....then I get the joy of sharing

what's left with those who I will call my EX brother and EX sister

who's lives did not change during Mom and Dad's illness......I cannot

look at this board much longer....it is painfull.... tho I did not

often interject (as there seem to be plenty of people with more time

and faster typing skills)....I did learn a bit from some of the posts

but there are so many off topic......I will direct donations to the

LBD Associationa as their website saved my sanity before Mom was

diagnosed....Thank you all for what help I got and just to know we

are not all NUTS reporting our loved ones fluctuations in

symptoms...I will miss my mother but not the rigors of her

care.....it was time for an end....Tom Guggenbiller

>

>

[Guest guest]

Tom - my condolences to you. May you find peace that your mother is

no longer in pain. Thank you for taking the time to write to all of

us, it certainly helps in our future decision making.

>

> To All....this Tuesday afternoon my mother (Iron) Alice passed away

of LBD....the past 6 weeks of hospice as we went thru withdrawing her

meds.....then she was bedridden the last 5 weeks....no nourishment at

all (liquid breakfast drinks or other) for the last 26 days.......the

most fluid she got down in a day the last 5 weeks was eleven

ounces....the past week, 2 or 3 oz.....then sips and then not able to

have any the last three days......all the while her Lewy Body damaged

brain would not let her body shut off.....she could answer one word

answers at times but the past week no communication...she went from

about 95 lbs to less than 60.....the last two days were

brutal ....especially the last hours...the liquid tylenol with

codeine was not keeping her comfortable anymore and she could not

handle the quantity req.'d....so the last two days we went to

morphine to gain her some comfort and slow her system...this is

usually used with ativan at end of life to slow the heart and

breathing for comfort but in my mothers life ativan only made her

system work harder, so we tried one dose of lorzepam which was bad

and then tried and succeeded for a day with atarax and that was

better but she could not swallow it in liquid form

anymore......finally in the last hours the heart rate was 146 or more

and the BP dropped.....but it was not a comfortable passing for

her....all involved tried their best and tried to come up with

alternatives but were at a loss.......I was lucky to stop back to the

house to be there and prayed as the paid caregivers (one stayed over

on her time to be there) held her hands and did their best ,

amazingly it was her favorites...we have been at this two years and a

month.....also the past 4 weeks Mom had distanced herself from me

shortly after I brought in the priest for Last Rites.....at that

point the look on her face told me she had no real idea in her

dementia she was dying..though days previous she had stated she was

going with someone when they came for her..she really did not seem

aware of laying in bed and sleeping 22 hour of a day.....Mom had no

complicating illnesses to weaken her body to shorten

this.process.....her mind would not let her body rest till there was

nothing left....Alice was 12 days short of being 89 or 90 depending

on which church or state record you believe.........

>

> So many of you want to know the end...death as life is

individual....

>

>

> .I still know it was right to stop all meds as her deteriorating

swallowing ability dictated...her quality of life was also

gone.....all her caregivers and I were near our individual limits.....

(I with Mom(till she became a problem in late 03) cared for Dad with

Parkinsons then lung cancer for 5 years before he died in 1 - 2004)

then two months later Mom became 24/7 care with LBD(Diagnosed 11/04)

(symptoms started in 00 but no one could put a name to it but

vascular dementia)......Nature and LBD took their course but the

human body can stand an incredible amount if there is no complicating

disease......her funeral is Friday....then I get the joy of sharing

what's left with those who I will call my EX brother and EX sister

who's lives did not change during Mom and Dad's illness......I cannot

look at this board much longer....it is painfull.... tho I did not

often interject (as there seem to be plenty of people with more time

and faster typing skills)....I did learn a bit from some of the posts

but there are so many off topic......I will direct donations to the

LBD Associationa as their website saved my sanity before Mom was

diagnosed....Thank you all for what help I got and just to know we

are not all NUTS reporting our loved ones fluctuations in

symptoms...I will miss my mother but not the rigors of her

care.....it was time for an end....Tom Guggenbiller

>

>

[Guest guest]

Tom-

Please accept our most heartfelt condolences

in the passing of your mom. May you find peace

and comfort in knowing her fight has been won.

Hugs to you Tom-

Sandie and

Des Moines, IA

dad, Merle, passed away from LBD, 9-20-02, age 65

Jo, mom, still living in New Zealand with LBD, age 77

-- Alice is gone..what the end is like

To All....this Tuesday afternoon my mother (Iron) Alice passed away of LBD..

..the past 6 weeks of hospice as we went thru withdrawing her meds.....then

she was bedridden the last 5 weeks....no nourishment at all (liquid

breakfast drinks or other) for the last 26 days.......the most fluid she got

down in a day the last 5 weeks was eleven ounces....the past week, 2 or 3 oz

.....then sips and then not able to have any the last three days......all the

while her Lewy Body damaged brain would not let her body shut off.....she

could answer one word answers at times but the past week no communication..

she went from about 95 lbs to less than 60.....the last two days were brutal

.....especially the last hours...the liquid tylenol with codeine was not

keeping her comfortable anymore and she could not handle the quantity req.'d

....so the last two days we went to morphine to gain her some comfort and

slow her system...this is usually used with ativan at end of life to slow

the heart and breathing for comfort but in my mothers life ativan only made

her system work harder, so we tried one dose of lorzepam which was bad and

then tried and succeeded for a day with atarax and that was better but she

could not swallow it in liquid form anymore......finally in the last hours

the heart rate was 146 or more and the BP dropped.....but it was not a

comfortable passing for her....all involved tried their best and tried to

come up with alternatives but were at a loss.......I was lucky to stop back

to the house to be there and prayed as the paid caregivers (one stayed over

on her time to be there) held her hands and did their best , amazingly it

was her favorites...we have been at this two years and a month.....also the

past 4 weeks Mom had distanced herself from me shortly after I brought in

the priest for Last Rites.....at that point the look on her face told me she

had no real idea in her dementia she was dying..though days previous she had

stated she was going with someone when they came for her..she really did not

seem aware of laying in bed and sleeping 22 hour of a day.....Mom had no

complicating illnesses to weaken her body to shorten this.process.....her

mind would not let her body rest till there was nothing left....Alice was 12

days short of being 89 or 90 depending on which church or state record you

believe.........

So many of you want to know the end...death as life is individual....

.I still know it was right to stop all meds as her deteriorating

swallowing ability dictated...her quality of life was also gone.....all her

caregivers and I were near our individual limits.....(I with Mom(till she

became a problem in late 03) cared for Dad with Parkinsons then lung cancer

for 5 years before he died in 1 - 2004) then two months later Mom became

24/7 care with LBD(Diagnosed 11/04) (symptoms started in 00 but no one could

put a name to it but vascular dementia)......Nature and LBD took their

course but the human body can stand an incredible amount if there is no

complicating disease......her funeral is Friday....then I get the joy of

sharing what's left with those who I will call my EX brother and EX sister

who's lives did not change during Mom and Dad's illness......I cannot look

at this board much longer....it is painfull.... tho I did not often

interject (as there seem to be plenty of people with more time and faster

typing skills)....I did learn a bit from some of the posts but there are so

many off topic......I will direct donations to the LBD Associationa as their

website saved my sanity before Mom was diagnosed....Thank you all for what

help I got and just to know we are not all NUTS reporting our loved ones

fluctuations in symptoms...I will miss my mother but not the rigors of her

care.....it was time for an end....Tom Guggenbiller

[Guest guest]

Tom,

Condolences to you and your family. It has been a long road for you. It sounds

like your Mom earned her peace. I hope you find a support group to attend and

do your grieving. I found it very worthwhile.

Donna R

Do you want to read more about Lewy Body? You can also read the Thistle, the

LBD Newsletter. Just click on:

http://www.lewybodydementia.org

Alice is gone..what the end is like

[Guest guest]

Condolences to you Tom.

>

> To All....this Tuesday afternoon my mother (Iron) Alice passed

away of LBD....the past 6 weeks of hospice as we went thru

withdrawing her meds.....then she was bedridden the last 5

weeks....no nourishment at all (liquid breakfast drinks or other)

for the last 26 days.......the most fluid she got down in a day the

last 5 weeks was eleven ounces....the past week, 2 or 3 oz.....then

sips and then not able to have any the last three days......all the

while her Lewy Body damaged brain would not let her body shut

off.....she could answer one word answers at times but the past week

no communication...she went from about 95 lbs to less than

60.....the last two days were brutal ....especially the last

hours...the liquid tylenol with codeine was not keeping her

comfortable anymore and she could not handle the quantity

req.'d....so the last two days we went to morphine to gain her some

comfort and slow her system...this is usually used with ativan at

end of life to slow the heart and breathing for comfort but in my

mothers life ativan only made her system work harder, so we tried

one dose of lorzepam which was bad and then tried and succeeded for

a day with atarax and that was better but she could not swallow it

in liquid form anymore......finally in the last hours the heart rate

was 146 or more and the BP dropped.....but it was not a comfortable

passing for her....all involved tried their best and tried to come

up with alternatives but were at a loss.......I was lucky to stop

back to the house to be there and prayed as the paid caregivers (one

stayed over on her time to be there) held her hands and did their

best , amazingly it was her favorites...we have been at this two

years and a month.....also the past 4 weeks Mom had distanced

herself from me shortly after I brought in the priest for Last

Rites.....at that point the look on her face told me she had no real

idea in her dementia she was dying..though days previous she had

stated she was going with someone when they came for her..she really

did not seem aware of laying in bed and sleeping 22 hour of a

day.....Mom had no complicating illnesses to weaken her body to

shorten this.process.....her mind would not let her body rest till

there was nothing left....Alice was 12 days short of being 89 or 90

depending on which church or state record you believe.........

>

> So many of you want to know the end...death as life is

individual....

>

>

> .I still know it was right to stop all meds as her

deteriorating swallowing ability dictated...her quality of life was

also gone.....all her caregivers and I were near our individual

limits.....(I with Mom(till she became a problem in late 03) cared

for Dad with Parkinsons then lung cancer for 5 years before he died

in 1 - 2004) then two months later Mom became 24/7 care with LBD

(Diagnosed 11/04) (symptoms started in 00 but no one could put a

name to it but vascular dementia)......Nature and LBD took their

course but the human body can stand an incredible amount if there is

no complicating disease......her funeral is Friday....then I get the

joy of sharing what's left with those who I will call my EX brother

and EX sister who's lives did not change during Mom and Dad's

illness......I cannot look at this board much longer....it is

painfull.... tho I did not often interject (as there seem to be

plenty of people with more time and faster typing skills)....I did

learn a bit from some of the posts but there are so many off

topic......I will direct donations to the LBD Associationa as their

website saved my sanity before Mom was diagnosed....Thank you all

for what help I got and just to know we are not all NUTS reporting

our loved ones fluctuations in symptoms...I will miss my mother but

not the rigors of her care.....it was time for an end....Tom

Guggenbiller

>

>

[Guest guest]

Dear Tom,

I am truly sorry that your Mother had to suffer so much during her dying days.

I am also sad that you suffered as well. I hope you will receive some

consolation in the fact that you were there for her.

My very deepest sympathy.

Gerry Deverell

Wilmington, De.

Daughter and caregiver for Dick Deverell, who passed away 9/11/05 after more

than a 4 yr. battle with LBD.

Alice is gone..what the end is like

To All....this Tuesday afternoon my mother (Iron) Alice passed away of

LBD....the past 6 weeks of hospice as we went thru withdrawing her meds.....then

she was bedridden the last 5 weeks....no nourishment at all (liquid breakfast

drinks or other) for the last 26 days.......the most fluid she got down in a day

the last 5 weeks was eleven ounces....the past week, 2 or 3 oz.....then sips and

then not able to have any the last three days......all the while her Lewy Body

damaged brain would not let her body shut off.....she could answer one word

answers at times but the past week no communication...she went from about 95 lbs

to less than 60.....the last two days were brutal ....especially the last

hours...the liquid tylenol with codeine was not keeping her comfortable anymore

and she could not handle the quantity req.'d....so the last two days we went to

morphine to gain her some comfort and slow her system...this is usually used

with ativan at end of life to slow the heart and breathing for comfort but in my

mothers life ativan only made her system work harder, so we tried one dose of

lorzepam which was bad and then tried and succeeded for a day with atarax and

that was better but she could not swallow it in liquid form anymore......finally

in the last hours the heart rate was 146 or more and the BP dropped.....but it

was not a comfortable passing for her....all involved tried their best and tried

to come up with alternatives but were at a loss.......I was lucky to stop back

to the house to be there and prayed as the paid caregivers (one stayed over on

her time to be there) held her hands and did their best , amazingly it was her

favorites...we have been at this two years and a month.....also the past 4 weeks

Mom had distanced herself from me shortly after I brought in the priest for Last

Rites.....at that point the look on her face told me she had no real idea in her

dementia she was dying..though days previous she had stated she was going with

someone when they came for her..she really did not seem aware of laying in bed

and sleeping 22 hour of a day.....Mom had no complicating illnesses to weaken

her body to shorten this.process.....her mind would not let her body rest till

there was nothing left....Alice was 12 days short of being 89 or 90 depending on

which church or state record you believe.........

So many of you want to know the end...death as life is individual....

.I still know it was right to stop all meds as her deteriorating swallowing

ability dictated...her quality of life was also gone.....all her caregivers and

I were near our individual limits.....(I with Mom(till she became a problem in

late 03) cared for Dad with Parkinsons then lung cancer for 5 years before he

died in 1 - 2004) then two months later Mom became 24/7 care with LBD(Diagnosed

11/04) (symptoms started in 00 but no one could put a name to it but vascular

dementia)......Nature and LBD took their course but the human body can stand an

incredible amount if there is no complicating disease......her funeral is

Friday....then I get the joy of sharing what's left with those who I will call

my EX brother and EX sister who's lives did not change during Mom and Dad's

illness......I cannot look at this board much longer....it is painfull.... tho I

did not often interject (as there seem to be plenty of people with more time and

faster typing skills)....I did learn a bit from some of the posts but there are

so many off topic......I will direct donations to the LBD Associationa as their

website saved my sanity before Mom was diagnosed....Thank you all for what help

I got and just to know we are not all NUTS reporting our loved ones fluctuations

in symptoms...I will miss my mother but not the rigors of her care.....it was

time for an end....Tom Guggenbiller

[Guest guest]

Dear Tom

I am sorry to hear of the loss of your mom, but then as you said, it was not

really her anymore...

God bless you for being there until the end, as I too, plan to be. My

siblings are absent most of the time and so it has been me, and will be me when

the time comes. I have come to terms with this somewhat (not that I had that

much of a choice really as I suspect the same was with you), as I know I am with

mom as much for myself as I am for her and one day they will be left with

regrets and I will have none.

Thank you for sharing what we all will go through, although each experience

will be different it will also be the same and reading and sharing has helped

many of us in the past and in the future.

Tom, you might not have posted much but you went through it all the same and

you are right in that we are the ones that KNOW what you went through. There

are not many men in our group and I am so proud to know that you were there and

here with little male support.

I hope that you can now rest and have some peace in your life. You deserve

it.

Thinking of you today.

Kath in Toronto

Tom Guggenbiller wrote:

To All....this Tuesday afternoon my mother (Iron) Alice passed away of

LBD....the past 6 weeks of hospice as we went thru withdrawing her meds.....then

she was bedridden the last 5 weeks....no nourishment at all (liquid breakfast

drinks or other) for the last 26 days.......the most fluid she got down in a day

the last 5 weeks was eleven ounces....the past week, 2 or 3 oz.....then sips and

then not able to have any the last three days......all the while her Lewy Body

damaged brain would not let her body shut off.....she could answer one word

answers at times but the past week no communication...she went from about 95 lbs

to less than 60.....the last two days were brutal ....especially the last

hours...the liquid tylenol with codeine was not keeping her comfortable anymore

and she could not handle the quantity req.'d....so the last two days we went to

morphine to gain her some comfort and slow her system...this is usually used

with ativan at end of life to slow the heart

and breathing for comfort but in my mothers life ativan only made her system

work harder, so we tried one dose of lorzepam which was bad and then tried and

succeeded for a day with atarax and that was better but she could not swallow it

in liquid form anymore......finally in the last hours the heart rate was 146 or

more and the BP dropped.....but it was not a comfortable passing for her....all

involved tried their best and tried to come up with alternatives but were at a

loss.......I was lucky to stop back to the house to be there and prayed as the

paid caregivers (one stayed over on her time to be there) held her hands and did

their best , amazingly it was her favorites...we have been at this two years and

a month.....also the past 4 weeks Mom had distanced herself from me shortly

after I brought in the priest for Last Rites.....at that point the look on her

face told me she had no real idea in her dementia she was dying..though days

previous she had stated she was going

with someone when they came for her..she really did not seem aware of laying in

bed and sleeping 22 hour of a day.....Mom had no complicating illnesses to

weaken her body to shorten this.process.....her mind would not let her body rest

till there was nothing left....Alice was 12 days short of being 89 or 90

depending on which church or state record you believe.........

So many of you want to know the end...death as life is individual....

..I still know it was right to stop all meds as her deteriorating swallowing

ability dictated...her quality of life was also gone.....all her caregivers and

I were near our individual limits.....(I with Mom(till she became a problem in

late 03) cared for Dad with Parkinsons then lung cancer for 5 years before he

died in 1 - 2004) then two months later Mom became 24/7 care with LBD(Diagnosed

11/04) (symptoms started in 00 but no one could put a name to it but vascular

dementia)......Nature and LBD took their course but the human body can stand an

incredible amount if there is no complicating disease......her funeral is

Friday....then I get the joy of sharing what's left with those who I will call

my EX brother and EX sister who's lives did not change during Mom and Dad's

illness......I cannot look at this board much longer....it is painfull.... tho I

did not often interject (as there seem to be plenty of people with more time and

faster typing skills)....I did learn a bit

from some of the posts but there are so many off topic......I will direct

donations to the LBD Associationa as their website saved my sanity before Mom

was diagnosed....Thank you all for what help I got and just to know we are not

all NUTS reporting our loved ones fluctuations in symptoms...I will miss my

mother but not the rigors of her care.....it was time for an end....Tom

Guggenbiller

[Guest guest]

Dear Tom,

I am so sorry to hear of your mom's passing, but I know it is a relief that

she is free of LBD. My father had a similar end of life experience as your

mother's - it was very hard. He just passed away in March. I know you are

emotionally and physically rung out. You will be in my thoughts and prayers.

I

am sending you strength to get through the family obligations over the next

few days. You have been a wonderful son to your mother over many years, and I

should bring you much peace.

Love and hugs,

Piper

[Guest guest]

Hi Tom

I am sending you my heartfelt condolences for the

passing of your mother. Her last days sounds really

tough, but I believe that she now has a new body and

mind again. She is free from this blasted disease. You

sound exhausted. Take some time for you after her

service. I will be praying that it all goes well. I am

sorry to hear about your siblings. But they will have

to live with their decisions for life. You will have a

guilt free conscious because you did all you could

very time you needed too. God Bless you, Tom

Dena

Mother (83) End stages LBD. Not currently on any meds.

--- Tom Guggenbiller wrote:

> To All....this Tuesday afternoon my mother (Iron)

> Alice passed away of LBD....the past 6 weeks of

> hospice as we went thru withdrawing her

> meds.....then she was bedridden the last 5

> weeks....no nourishment at all (liquid breakfast

> drinks or other) for the last 26 days.......the most

> fluid she got down in a day the last 5 weeks was

> eleven ounces....the past week, 2 or 3 oz.....then

> sips and then not able to have any the last three

> days......all the while her Lewy Body damaged brain

> would not let her body shut off.....she could answer

> one word answers at times but the past week no

> communication...she went from about 95 lbs to less

> than 60.....the last two days were brutal

> ....especially the last hours...the liquid tylenol

> with codeine was not keeping her comfortable anymore

> and she could not handle the quantity req.'d....so

> the last two days we went to morphine to gain her

> some comfort and slow her system...this is usually

> used with ativan at end of life to slow the heart

> and breathing for comfort but in my mothers life

> ativan only made her system work harder, so we tried

> one dose of lorzepam which was bad and then tried

> and succeeded for a day with atarax and that was

> better but she could not swallow it in liquid form

> anymore......finally in the last hours the heart

> rate was 146 or more and the BP dropped.....but it

> was not a comfortable passing for her....all

> involved tried their best and tried to come up with

> alternatives but were at a loss.......I was lucky to

> stop back to the house to be there and prayed as the

> paid caregivers (one stayed over on her time to be

> there) held her hands and did their best , amazingly

> it was her favorites...we have been at this two

> years and a month.....also the past 4 weeks Mom had

> distanced herself from me shortly after I brought in

> the priest for Last Rites.....at that point the look

> on her face told me she had no real idea in her

> dementia she was dying..though days previous she had

> stated she was going with someone when they came for

> her..she really did not seem aware of laying in bed

> and sleeping 22 hour of a day.....Mom had no

> complicating illnesses to weaken her body to shorten

> this.process.....her mind would not let her body

> rest till there was nothing left....Alice was 12

> days short of being 89 or 90 depending on which

> church or state record you believe.........

>

> So many of you want to know the end...death as life

> is individual....

>

>

> .I still know it was right to stop all meds as

> her deteriorating swallowing ability dictated...her

> quality of life was also gone.....all her caregivers

> and I were near our individual limits.....(I with

> Mom(till she became a problem in late 03) cared for

> Dad with Parkinsons then lung cancer for 5 years

> before he died in 1 - 2004) then two months later

> Mom became 24/7 care with LBD(Diagnosed 11/04)

> (symptoms started in 00 but no one could put a name

> to it but vascular dementia)......Nature and LBD

> took their course but the human body can stand an

> incredible amount if there is no complicating

> disease......her funeral is Friday....then I get the

> joy of sharing what's left with those who I will

> call my EX brother and EX sister who's lives did not

> change during Mom and Dad's illness......I cannot

> look at this board much longer....it is painfull....

> tho I did not often interject (as there seem to be

> plenty of people with more time and faster typing

> skills)....I did learn a bit from some of the posts

> but there are so many off topic......I will direct

> donations to the LBD Associationa as their website

> saved my sanity before Mom was diagnosed....Thank

> you all for what help I got and just to know we are

> not all NUTS reporting our loved ones fluctuations

> in symptoms...I will miss my mother but not the

> rigors of her care.....it was time for an end....Tom

> Guggenbiller

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________