Re: Alzheimer's vrs. Lewy Body

April 20, 2006

Hi to all of you. As I read about your experiences;

the strength and sincere compasion to the end,the

endless stages and phases of each aspect of this

horrible disease...

Yet you never give less of yourself in the

devotion of time towards your loved ones though their

change is so dramatic and at times you must be exhausted;

my heart pours out to you all.

My Mom has Lewy Body diagnosed August 2005 and you all have

been so kind answering questions, lending support...thank you.

Why is this disease so much worse, in my experiences, than

Alzheimer's? My mother-in-law and her twin sister have Alzheimer's

but both are in the same care facility but always upbeat,

have tons of energy, never quick talking,laughs easily...

and my mom is almost always depressed, teary, tired,difficulty

talking and moving; why is there such a profound difference?

Thank you. My hopes are that there becomes an end to this tragic

illness.

Marcie

Daughter to my best friend, my Mom, in Missouri.

April 21, 2006

Marcie,

This is just my opinion but, I think it is different because with

LBD, the cognitive ability fluctuates. My dad's mind is still

pretty good. Most days (90-95% of the time) he is doing pretty well

mentally. He does have his occasional confusion but usually he is

good. So, he sits and thinks about how his life used to be, when he

was able to walk, drive, be on his own and not sitting in a

wheelchair or laying in a NH bed. I think the LBD patients are much

more AWARE of what is going on with their minds and their bodies and

that is where the depression comes in. Some aren't able to express

it because of communication problems but none the less, I think they

are aware. Just my thoughts on the subject. Dad used to be a very

outgoing person, loved to laugh and joke. Now he sits quiet, more

or less speaks when he is spoken to. He doesn't like to get

involved in the activities, would rather sit alone in his room. I

find that very sad. I encourage him to do things but never force

him. Once in a while he surprises me and goes to an activity with

me. He enjoys visits from his family (especially his great-

granddaughter), occasionally he will look through a Birds and Blooms

magazine. He likes the bright pictures. Mostly he sleeps. He

wants to be in bed most of the time only being up for meals. We

have seen depression with him from the beginning, he thought

he " looked funny " . After that, he wouldn't go anywhere. Anyway,

just my thoughts.

Donna Pearce

>

> Hi to all of you. As I read about your experiences;

> the strength and sincere compasion to the end,the

> endless stages and phases of each aspect of this

> horrible disease...

> Yet you never give less of yourself in the

> devotion of time towards your loved ones though their

> change is so dramatic and at times you must be exhausted;

> my heart pours out to you all.

> My Mom has Lewy Body diagnosed August 2005 and you all have

> been so kind answering questions, lending support...thank you.

>

> Why is this disease so much worse, in my experiences, than

> Alzheimer's? My mother-in-law and her twin sister have

Alzheimer's

> but both are in the same care facility but always upbeat,

> have tons of energy, never quick talking,laughs easily...

> and my mom is almost always depressed, teary, tired,difficulty

> talking and moving; why is there such a profound difference?

>

> Thank you. My hopes are that there becomes an end to this tragic

> illness.

>

> Marcie

>

> Daughter to my best friend, my Mom, in Missouri.

>

April 21, 2006

I have noticed that in the 2+ months my husband has

been in the NH that several of those in the memory

care unit have shown drastic going downhill, and my

husband, who I thought was bad when he went in, has

shown improvement even though he fluctuates from day

to day. Since he has been there, three persons have

died, and one was very fiesty and almost combative

when he (my husband) first entered the home. The last

time they brought her to the DRoom to eat, she looked

like death, and I thought perhaps she had to go to the

hospital, but I saw her obituary in the paper

yesterday, so apparently she was still there when she

died. She went downhill very rapidly. Another one

who has been very talkative, walking a lot, and

generally very mobile, is now very quiet, and tonight

had an oxygen tube in her nose, sat quietly and was

not constantly calling out for her " daddy " who is her

husband. I would assume that these persons have AD as

opposed to LBD, as they were regressing steadily it

seemed. I wish there was a more definitive way to

tell if my husband has LBD, as the doctor does not

appear to think he does, even though I do.

--- Donna wrote:

> Marcie,

> This is just my opinion but, I think it is different

> because with

> LBD, the cognitive ability fluctuates. My dad's

> mind is still

> pretty good. Most days (90-95% of the time) he is

> doing pretty well

> mentally. He does have his occasional confusion but

> usually he is

> good. So, he sits and thinks about how his life

> used to be, when he

> was able to walk, drive, be on his own and not

> sitting in a

> wheelchair or laying in a NH bed. I think the LBD

> patients are much

> more AWARE of what is going on with their minds and

> their bodies and

> that is where the depression comes in. Some aren't

> able to express

> it because of communication problems but none the

> less, I think they

> are aware. Just my thoughts on the subject. Dad

> used to be a very

> outgoing person, loved to laugh and joke. Now he

> sits quiet, more

> or less speaks when he is spoken to. He doesn't

> like to get

> involved in the activities, would rather sit alone

> in his room. I

> find that very sad. I encourage him to do things

> but never force

> him. Once in a while he surprises me and goes to an

> activity with

> me. He enjoys visits from his family (especially

> his great-

> granddaughter), occasionally he will look through a

> Birds and Blooms

> magazine. He likes the bright pictures. Mostly he

> sleeps. He

> wants to be in bed most of the time only being up

> for meals. We

> have seen depression with him from the beginning, he

> thought

> he " looked funny " . After that, he wouldn't go

> anywhere. Anyway,

> just my thoughts.

> Donna Pearce

>

> >

> > Hi to all of you. As I read about your

> experiences;

> > the strength and sincere compasion to the end,the

> > endless stages and phases of each aspect of this

> > horrible disease...

> > Yet you never give less of yourself in the

> > devotion of time towards your loved ones though

> their

> > change is so dramatic and at times you must be

> exhausted;

> > my heart pours out to you all.

> > My Mom has Lewy Body diagnosed August 2005 and

> you all have

> > been so kind answering questions, lending

> support...thank you.

> >

> > Why is this disease so much worse, in my

> experiences, than

> > Alzheimer's? My mother-in-law and her twin sister

> have

> Alzheimer's

> > but both are in the same care facility but always

> upbeat,

> > have tons of energy, never quick talking,laughs

> easily...

> > and my mom is almost always depressed, teary,

> tired,difficulty

> > talking and moving; why is there such a profound

> difference?

> >

> > Thank you. My hopes are that there becomes an end

> to this tragic

> > illness.

> >

> > Marcie

> >

> > Daughter to my best friend, my Mom, in Missouri.

> >

>

__________________________________________________

April 22, 2006

June,

I am amazed at the speed of cognitive and physical decline in my mother's nh as

well, as

she declines, but at a slow rate. She's been in nh for over 4 years now. Some

I have

pegged with LBD when I see certain key symptoms, but who knows what else plays

into

their demise: TIAs, strokes, heart, diabetes, pneumonia, UTIs: the list goes on.

It is sad to

see their rapid decline.

I ate my lunch there yesterday with a lady in her wheelchair, over 90, who was

coherent

and fun when Mom arrived there. She refuses to eat now, thinking she has not

paid for

the food, so I thought by joining her she might eat with me. She did drink her

milk with

encouragement, but in the meantime I enjoyed her sharing the antics of children

outside

the window on tricycles, suddenly one on a swing, then a man appeared on a

trike. No

one there except for her visions. She even knew who 2 of the boys were, their

mother ran

the daycare next door.

, Oakville Ont.

Mom 92, 12 1/2 years " Parkinsons "

3 1/2 years ago LBD diagnosis, evident much longer in hindsight.

Encouraged to give up her licence 6 years ago.

Currently immobile, in tilt wheelchair, spoonfed pureed food. Spends most of

days behind

closed eyes.

Eltroxin, Tylenol twice a day.

Off Aricept since Feb./06

> > >

> > > Hi to all of you. As I read about your

> > experiences;

> > > the strength and sincere compasion to the end,the

> > > endless stages and phases of each aspect of this

> > > horrible disease...

> > > Yet you never give less of yourself in the

> > > devotion of time towards your loved ones though

> > their

> > > change is so dramatic and at times you must be

> > exhausted;

> > > my heart pours out to you all.

> > > My Mom has Lewy Body diagnosed August 2005 and

> > you all have

> > > been so kind answering questions, lending

> > support...thank you.

> > >

> > > Why is this disease so much worse, in my

> > experiences, than

> > > Alzheimer's? My mother-in-law and her twin sister

> > have

> > Alzheimer's

> > > but both are in the same care facility but always

> > upbeat,

> > > have tons of energy, never quick talking,laughs

> > easily...

> > > and my mom is almost always depressed, teary,

> > tired,difficulty

> > > talking and moving; why is there such a profound

> > difference?

> > >

> > > Thank you. My hopes are that there becomes an end

> > to this tragic

> > > illness.

> > >

> > > Marcie

> > >

> > > Daughter to my best friend, my Mom, in Missouri.

> > >

> >

>

> __________________________________________________

>

April 22, 2006

My mom is also in a NH diagnosed with LBD. She is aware of everything going on

around her but she cannot walk, talk, go to the bathroom, eat -- pretty much

just lays in bed and stares at TV waiting for our visits. My sister and I are

there every day either both together or we take turns. Mom and my sister and I

are and have always been best friends. We have been so lucky in this respect.

So I guess it makes it doubly hard because we miss our mom so much. She can't

talk because she has a trach for aspiration pneumonia; she can't eat because of

the trach so has a feeding tube. Her muscles are all gone so she can only lay

in bed or sit in a high backed wheelchair for a little while. She has a lot

of pain. On April 18th she had a trach revision done. Before this she was

having trouble with her speaking valve (a wonderful little device which allowed

her to communicate with us), but since the revision which was supposed to make

it possible to use the valve

again she has not been able to speak -- yet. We're hoping it's just maybe

still some swelling or something in there and that she will be able to speak

again. Anyway, she is extremely depressed now!!!!!! As if she wasn't before!

In fact, this last surgery, I think, may have made her worse. I told my

sister, " no more surgeries of any kind, " even if it saves her life. I know it

sounds terrible but she has no quality of life other than our daily visits and

she's miserable and always in pain and depressed. It's just not her anymore.

It's such a nightmare. She says she prays to God every nite that he takes her

in her sleep. I told my sister this is what I'm planning to do now too. I

mean, I have prayed that God make her not afraid or that she not be in so much

pain or that she not be so depressed. What would happen if she got another

infection -- she still gets pneumonia all the time -- and we told the doctors

no more antibiotics??? She is getting

" immune " or whatever to the antibiotics anyway and they have to try new ones

all the time. One of her doctors has talked to us about " comfort care. " I

just don't know if I could or if we could do this. I mean, to purposely let

her go! But seeing her like this is soooo heartbreaking and I know she doesn't

want to live this way.

What do others of you out there think about this? She has a living will.

in CT . . .

June Christensen wrote: I have noticed that

in the 2+ months my husband has

been in the NH that several of those in the memory

care unit have shown drastic going downhill, and my

husband, who I thought was bad when he went in, has

shown improvement even though he fluctuates from day

to day. Since he has been there, three persons have

died, and one was very fiesty and almost combative

when he (my husband) first entered the home. The last

time they brought her to the DRoom to eat, she looked

like death, and I thought perhaps she had to go to the

hospital, but I saw her obituary in the paper

yesterday, so apparently she was still there when she

died. She went downhill very rapidly. Another one

who has been very talkative, walking a lot, and

generally very mobile, is now very quiet, and tonight

had an oxygen tube in her nose, sat quietly and was

not constantly calling out for her " daddy " who is her

husband. I would assume that these persons have AD as

opposed to LBD, as they were regressing steadily it

seemed. I wish there was a more definitive way to

tell if my husband has LBD, as the doctor does not

appear to think he does, even though I do.

--- Donna wrote:

> Marcie,

> This is just my opinion but, I think it is different

> because with

> LBD, the cognitive ability fluctuates. My dad's

> mind is still

> pretty good. Most days (90-95% of the time) he is

> doing pretty well

> mentally. He does have his occasional confusion but

> usually he is

> good. So, he sits and thinks about how his life

> used to be, when he

> was able to walk, drive, be on his own and not

> sitting in a

> wheelchair or laying in a NH bed. I think the LBD

> patients are much

> more AWARE of what is going on with their minds and

> their bodies and

> that is where the depression comes in. Some aren't

> able to express

> it because of communication problems but none the

> less, I think they

> are aware. Just my thoughts on the subject. Dad

> used to be a very

> outgoing person, loved to laugh and joke. Now he

> sits quiet, more

> or less speaks when he is spoken to. He doesn't

> like to get

> involved in the activities, would rather sit alone

> in his room. I

> find that very sad. I encourage him to do things

> but never force

> him. Once in a while he surprises me and goes to an

> activity with

> me. He enjoys visits from his family (especially

> his great-

> granddaughter), occasionally he will look through a

> Birds and Blooms

> magazine. He likes the bright pictures. Mostly he

> sleeps. He

> wants to be in bed most of the time only being up

> for meals. We

> have seen depression with him from the beginning, he

> thought

> he " looked funny " . After that, he wouldn't go

> anywhere. Anyway,

> just my thoughts.

> Donna Pearce

>

> >

> > Hi to all of you. As I read about your

> experiences;

> > the strength and sincere compasion to the end,the

> > endless stages and phases of each aspect of this

> > horrible disease...

> > Yet you never give less of yourself in the

> > devotion of time towards your loved ones though

> their

> > change is so dramatic and at times you must be

> exhausted;

> > my heart pours out to you all.

> > My Mom has Lewy Body diagnosed August 2005 and

> you all have

> > been so kind answering questions, lending

> support...thank you.

> >

> > Why is this disease so much worse, in my

> experiences, than

> > Alzheimer's? My mother-in-law and her twin sister

> have

> Alzheimer's

> > but both are in the same care facility but always

> upbeat,

> > have tons of energy, never quick talking,laughs

> easily...

> > and my mom is almost always depressed, teary,

> tired,difficulty

> > talking and moving; why is there such a profound

> difference?

> >

> > Thank you. My hopes are that there becomes an end

> to this tragic

> > illness.

> >

> > Marcie

> >

> > Daughter to my best friend, my Mom, in Missouri.

> >

>

__________________________________________________

April 22, 2006

Hi - your post sounds so familiar - my sister, my mom, and I for

years were 'friends' hanging out, rather than mother and two

daughters. I'm so happy we had that time together. For more than 5

years we were meeting for lunch weekly - which was actually the only

break I would take from work, the rest of the time eating at my desk

while I worked. Before that my sister was a stay at home mom, but now

she works in the city. And since mom lived in the city the 3 of us

would to this lunch thing - and I am so lucky we had this time. Sadly

our last lunch together was around May 2005 when mom got lost on the

way to meet us...

My mother had a biopsy in February (to see if she had Cerebral

Vasculitis - she doesn't she has LBD) and after we all went through

that ordeal we all said " That's it! No more drastic measures! " My

mother was close to not making it through that ordeal (actually mom

told me recently that she did die and came back - of course I was

trying to get info about that - but she couldn't explain) - there was

a time where most of the family thought she wasn't going to make it

(but b/c I was on this board, I knew better...) But I, too, made that

decision - we're no longer going to try and SAVE mom, just LOVE mom.

I was desperate that she get back to where she was so I could go back

to just loving her the way she was and luckily am able to do so.

It is an extremely tough decision. And we chose no heroic measures.

Read the attached - it was very helpful in making those decisions:

http://www.hardchoices.com/toc_hc.html

My thoughts and prayers are with you.

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid decline from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

as weepy) and as of 4/21 on Exelon.

> > >

> > > Hi to all of you. As I read about your

> > experiences;

> > > the strength and sincere compasion to the end,the

> > > endless stages and phases of each aspect of this

> > > horrible disease...

> > > Yet you never give less of yourself in the

> > > devotion of time towards your loved ones though

> > their

> > > change is so dramatic and at times you must be

> > exhausted;

> > > my heart pours out to you all.

> > > My Mom has Lewy Body diagnosed August 2005 and

> > you all have

> > > been so kind answering questions, lending

> > support...thank you.

> > >

> > > Why is this disease so much worse, in my

> > experiences, than

> > > Alzheimer's? My mother-in-law and her twin sister

> > have

> > Alzheimer's

> > > but both are in the same care facility but always

> > upbeat,

> > > have tons of energy, never quick talking,laughs

> > easily...

> > > and my mom is almost always depressed, teary,

> > tired,difficulty

> > > talking and moving; why is there such a profound

> > difference?

> > >

> > > Thank you. My hopes are that there becomes an end

> > to this tragic

> > > illness.

> > >

> > > Marcie

> > >

> > > Daughter to my best friend, my Mom, in Missouri.

> > >

> >

>

> __________________________________________________

>

April 22, 2006

Hi

If your mother has a living will you should respect and follow her wishes, as

hard as it is. I

have found the support and realistic approach to end of life interference on

this

conference invaluable in making the same kinds of decisions ahead of time that

you are

debating. We must keep our lo's wishes and best interest foremost. She is

praying for

death, then as difficult as it will be for you, do not prolong it for her.

Hopefully she will speak soon. My FIL had to have a trache inserted a month ago

and is

now speaking quite well with it. It took a couple of weeks for the swelling to

subside

though for " corking " of the trache to be possible and him still able to breathe.

Now he

goes hours " corked " and able to speak, thankfully.

Heartfelt thoughts to you and your sister as you enter this final phase with its

decisions. I

hope you can remain in agreement and support each other through this difficult

time.

, Oakville Ont.

Mom 92, 12 1/2 years " Parkinsons "

3 1/2 years ago LBD diagnosis, evident much longer in hindsight.

Encouraged to give up her licence 6 years ago.

Currently immobile, in tilt wheelchair, spoonfed pureed food. Spends most of

days behind

closed eyes.

Eltroxin, Tylenol twice a day.

Off Aricept since Feb./06

> > >

> > > Hi to all of you. As I read about your

> > experiences;

> > > the strength and sincere compasion to the end,the

> > > endless stages and phases of each aspect of this

> > > horrible disease...

> > > Yet you never give less of yourself in the

> > > devotion of time towards your loved ones though

> > their

> > > change is so dramatic and at times you must be

> > exhausted;

> > > my heart pours out to you all.

> > > My Mom has Lewy Body diagnosed August 2005 and

> > you all have

> > > been so kind answering questions, lending

> > support...thank you.

> > >

> > > Why is this disease so much worse, in my

> > experiences, than

> > > Alzheimer's? My mother-in-law and her twin sister

> > have

> > Alzheimer's

> > > but both are in the same care facility but always

> > upbeat,

> > > have tons of energy, never quick talking,laughs

> > easily...

> > > and my mom is almost always depressed, teary,

> > tired,difficulty

> > > talking and moving; why is there such a profound

> > difference?

> > >

> > > Thank you. My hopes are that there becomes an end

> > to this tragic

> > > illness.

> > >

> > > Marcie

> > >

> > > Daughter to my best friend, my Mom, in Missouri.

> > >

> >

>

> __________________________________________________

>

April 22, 2006

Your mother has a Living will? What are her directives in it? Whatever she

wants please do it for her. One thing I would suggest right now, is ask the

doctor for morphine, to make her feel peaceful and relieve her pain.

In am so sorry you are having to deal with this.

Imogene

In a message dated 4/22/2006 4:25:15 PM Central Daylight Time,

daquilajmd@... writes:

My mom is also in a NH diagnosed with LBD. She is aware of everything

going on around her but she cannot walk, talk, go to the bathroom, eat --

pretty much just lays in bed and stares at TV waiting for our visits. My

sister

and I are there every day either both together or we take turns. Mom and my

sister and I are and have always been best friends. We have been so lucky

in this respect. So I guess it makes it doubly hard because we miss our

mom so much. She can't talk because she has a trach for aspiration pneumonia;

she can't eat because of the trach so has a feeding tube. Her muscles are

all gone so she can only lay in bed or sit in a high backed wheelchair for

a little while. She has a lot of pain. On April 18th she had a trach

revision done. Before this she was having trouble with her speaking valve (a

wonderful little device which allowed her to communicate with us), but since

the revision which was supposed to make it possible to use the valve

again she has not been able to speak -- yet. We're hoping it's just maybe

still some swelling or something in there and that she will be able to

speak again. Anyway, she is extremely depressed now!!!!!! As if she wasn't

before! In fact, this last surgery, I think, may have made her worse. I told

my sister, " no more surgeries of any kind, " even if it saves her life. I

know it sounds terrible but she has no quality of life other than our daily

visits and she's miserable and always in pain and depressed. It's just not

her anymore. It's such a nightmare. She says she prays to God every nite

that he takes her in her sleep. I told my sister this is what I'm planning

to do now too. I mean, I have prayed that God make her not afraid or that

she not be in so much pain or that she not be so depressed. What would

happen if she got another infection -- she still gets pneumonia all the time

--

and we told the doctors no more antibiotics??? She is getting

" immune " or whatever to the antibiotics anyway and they have to try new

ones all the time. One of her doctors has talked to us about " comfort care. "

I just don't know if I could or if we could do this. I mean, to purposely

let her go! But seeing her like this is soooo heartbreaking and I know she

doesn't want to live this way.

What do others of you out there think about this? She has a living will.

in CT . . .

June Christensen wrote: I have noticed

that in the 2+ months my husband has

been in the NH that several of those in the memory

care unit have shown drastic going downhill, and my

husband, who I thought was bad when he went in, has

shown improvement even though he fluctuates from day

to day. Since he has been there, three persons have

died, and one was very fiesty and almost combative

when he (my husband) first entered the home. The last

time they brought her to the DRoom to eat, she looked

like death, and I thought perhaps she had to go to the

hospital, but I saw her obituary in the paper

yesterday, so apparently she was still there when she

died. She went downhill very rapidly. Another one

who has been very talkative, walking a lot, and

generally very mobile, is now very quiet, and tonight

had an oxygen tube in her nose, sat quietly and was

not constantly calling out for her " daddy " who is her

husband. I would assume that these persons have AD as

opposed to LBD, as they were regressing steadily it

seemed. I wish there was a more definitive way to

tell if my husband has LBD, as the doctor does not

appear to think he does, even though I do.

--- Donna wrote:

> Marcie,

> This is just my opinion but, I think it is different

> because with

> LBD, the cognitive ability fluctuates. My dad's

> mind is still

> pretty good. Most days (90-95% of the time) he is

> doing pretty well

> mentally. He does have his occasional confusion but

> usually he is

> good. So, he sits and thinks about how his life

> used to be, when he

> was able to walk, drive, be on his own and not

> sitting in a

> wheelchair or laying in a NH bed. I think the LBD

> patients are much

> more AWARE of what is going on with their minds and

> their bodies and

> that is where the depression comes in. Some aren't

> able to express

> it because of communication problems but none the

> less, I think they

> are aware. Just my thoughts on the subject. Dad

> used to be a very

> outgoing person, loved to laugh and joke. Now he

> sits quiet, more

> or less speaks when he is spoken to. He doesn't

> like to get

> involved in the activities, would rather sit alone

> in his room. I

> find that very sad. I encourage him to do things

> but never force

> him. Once in a while he surprises me and goes to an

> activity with

> me. He enjoys visits from his family (especially

> his great-

> granddaughter), occasionally he will look through a

> Birds and Blooms

> magazine. He likes the bright pictures. Mostly he

> sleeps. He

> wants to be in bed most of the time only being up

> for meals. We

> have seen depression with him from the beginning, he

> thought

> he " looked funny " . After that, he wouldn't go

> anywhere. Anyway,

> just my thoughts.

> Donna Pearce

>

> >

> > Hi to all of you. As I read about your

> experiences;

> > the strength and sincere compasion to the end,the

> > endless stages and phases of each aspect of this

> > horrible disease...

> > Yet you never give less of yourself in the

> > devotion of time towards your loved ones though

> their

> > change is so dramatic and at times you must be

> exhausted;

> > my heart pours out to you all.

> > My Mom has Lewy Body diagnosed August 2005 and

> you all have

> > been so kind answering questions, lending

> support...thank you.

> >

> > Why is this disease so much worse, in my

> experiences, than

> > Alzheimer's? My mother-in-law and her twin sister

> have

> Alzheimer's

> > but both are in the same care facility but always

> upbeat,

> > have tons of energy, never quick talking,laughs

> easily...

> > and my mom is almost always depressed, teary,

> tired,difficulty

> > talking and moving; why is there such a profound

> difference?

> >

> > Thank you. My hopes are that there becomes an end

> to this tragic

> > illness.

> >

> > Marcie

> >

> > Daughter to my best friend, my Mom, in Missouri.

> >

>

__________________________________________________

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Welcome to LBDcaregivers.

April 22, 2006

Dear Jean

This is a call that I have prayed that God would not

make me make. I am not sure if I could do it either.

My mom does not have a trach or feeding tube, so I can

only imagine just how horrid her life is. I would say

that you and your sister must make this decision on

your own as hard as it is. Just keeping praying and

maybe you could call your clergy in on this one.

Dena

--- jean daquila wrote:

> My mom is also in a NH diagnosed with LBD. She is

> aware of everything going on around her but she

> cannot walk, talk, go to the bathroom, eat --

> pretty much just lays in bed and stares at TV

> waiting for our visits. My sister and I are there

> every day either both together or we take turns.

> Mom and my sister and I are and have always been

> best friends. We have been so lucky in this

> respect. So I guess it makes it doubly hard because

> we miss our mom so much. She can't talk because

> she has a trach for aspiration pneumonia; she can't

> eat because of the trach so has a feeding tube.

> Her muscles are all gone so she can only lay in bed

> or sit in a high backed wheelchair for a little

> while. She has a lot of pain. On April 18th she

> had a trach revision done. Before this she was

> having trouble with her speaking valve (a wonderful

> little device which allowed her to communicate with

> us), but since the revision which was supposed to

> make it possible to use the valve

> again she has not been able to speak -- yet.

> We're hoping it's just maybe still some swelling or

> something in there and that she will be able to

> speak again. Anyway, she is extremely depressed

> now!!!!!! As if she wasn't before! In fact, this

> last surgery, I think, may have made her worse. I

> told my sister, " no more surgeries of any kind, "

> even if it saves her life. I know it sounds

> terrible but she has no quality of life other than

> our daily visits and she's miserable and always in

> pain and depressed. It's just not her anymore.

> It's such a nightmare. She says she prays to God

> every nite that he takes her in her sleep. I told

> my sister this is what I'm planning to do now too.

> I mean, I have prayed that God make her not afraid

> or that she not be in so much pain or that she not

> be so depressed. What would happen if she got

> another infection -- she still gets pneumonia all

> the time -- and we told the doctors no more

> antibiotics??? She is getting

> " immune " or whatever to the antibiotics anyway and

> they have to try new ones all the time. One of her

> doctors has talked to us about " comfort care. " I

> just don't know if I could or if we could do this.

> I mean, to purposely let her go! But seeing her

> like this is soooo heartbreaking and I know she

> doesn't want to live this way.

>

> What do others of you out there think about this?

> She has a living will.

>

> in CT . . .

>

> June Christensen wrote:

> I have noticed that in the 2+ months my

> husband has

> been in the NH that several of those in the memory

> care unit have shown drastic going downhill, and

> my

> husband, who I thought was bad when he went in,

> has

> shown improvement even though he fluctuates from

> day

> to day. Since he has been there, three persons

> have

> died, and one was very fiesty and almost combative

> when he (my husband) first entered the home. The

> last

> time they brought her to the DRoom to eat, she

> looked

> like death, and I thought perhaps she had to go to

> the

> hospital, but I saw her obituary in the paper

> yesterday, so apparently she was still there when

> she

> died. She went downhill very rapidly. Another

> one

> who has been very talkative, walking a lot, and

> generally very mobile, is now very quiet, and

> tonight

> had an oxygen tube in her nose, sat quietly and

> was

> not constantly calling out for her " daddy " who is

> her

> husband. I would assume that these persons have

> AD as

> opposed to LBD, as they were regressing steadily

> it

> seemed. I wish there was a more definitive way to

> tell if my husband has LBD, as the doctor does not

> appear to think he does, even though I do.

>

> --- Donna wrote:

>

> > Marcie,

> > This is just my opinion but, I think it is

> different

> > because with

> > LBD, the cognitive ability fluctuates. My dad's

> > mind is still

> > pretty good. Most days (90-95% of the time) he

> is

> > doing pretty well

> > mentally. He does have his occasional confusion

> but

> > usually he is

> > good. So, he sits and thinks about how his life

> > used to be, when he

> > was able to walk, drive, be on his own and not

> > sitting in a

> > wheelchair or laying in a NH bed. I think the

> LBD

> > patients are much

> > more AWARE of what is going on with their minds

> and

> > their bodies and

> > that is where the depression comes in. Some

> aren't

> > able to express

> > it because of communication problems but none

> the

> > less, I think they

> > are aware. Just my thoughts on the subject.

> Dad

> > used to be a very

> > outgoing person, loved to laugh and joke. Now

> he

> > sits quiet, more

> > or less speaks when he is spoken to. He doesn't

> > like to get

> > involved in the activities, would rather sit

> alone

> > in his room. I

> > find that very sad. I encourage him to do

> things

> > but never force

> > him. Once in a while he surprises me and goes

> to an

> > activity with

> > me. He enjoys visits from his family

> (especially

> > his great-

> > granddaughter), occasionally he will look

> through a

> > Birds and Blooms

> > magazine. He likes the bright pictures. Mostly

> he

> > sleeps. He

> > wants to be in bed most of the time only being

> up

> > for meals. We

> > have seen depression with him from the

> beginning, he

> > thought

> > he " looked funny " . After that, he wouldn't go

> > anywhere. Anyway,

> > just my thoughts.

> > Donna Pearce

> >

> > >

> > > Hi to all of you. As I read about your

> > experiences;

> > > the strength and sincere compasion to the

> end,the

> > > endless stages and phases of each aspect of

> this

> > > horrible disease...

> > > Yet you never give less of yourself in the

> > > devotion of time towards your loved ones

> though

> > their

> > > change is so dramatic and at times you must be

> > exhausted;

> > > my heart pours out to you all.

> > > My Mom has Lewy Body diagnosed August 2005

> and

> > you all have

> > > been so kind answering questions, lending

> > support...thank you.

> > >

> > > Why is this disease so much worse, in my

> > experiences, than

> > > Alzheimer's? My mother-in-law and her twin

> sister

> > have

> > Alzheimer's

> > > but both are in the same care facility but

> always

> > upbeat,

> > > have tons of energy, never quick

> talking,laughs

> > easily...

> > > and my mom is almost always depressed, teary,

> > tired,difficulty

> > > talking and moving; why is there such a

> profound

> > difference?

>

=== message truncated ===

__________________________________________________

April 23, 2006

What a terrible dilemma! I will certainly write up a new directive as soon

as possible.

I know I am not any help, but dear one, this is something between God, you

and your siblings.

I personally don't think I could withhold antibiotics, but I would not do

anymore heroic measures, if it were me, except give her morphine, like Right

now.

Now, that is my own feeling, but you must come up with your own, what with

being right in the middle of such a big traumatic situation with your mother,

and a decision to be made with your siblings. I am so sorry.

I hope I don't ever have to face such a situation. The more I learn, the

more I realize how important a more fully detailed Directive should be.

Please keep us posted, and even though you have to make this decision,

please know that we stand by you, and for you.

Imogene

In a message dated 4/23/2006 9:01:38 AM Central Daylight Time,

daquilajmd@... writes:

My mother's living will stipulated that she not be resuscitated if her

quality of life was not going to be improved or if she would not be able to

enjoy the company of her children and friends. In May of 2005 she had the

trach and feeding tube put because of the aspiration pneumonia, which I talked

about before. She had a speaking valve that we could manage ourselves so

she could talk with us. We felt that putting in the trach and tube was not in

violation of the living will because she was supposedly going to be better

off according to the doctors and the way we understood it. My brother and

sister were more hesitant than I and since then they have felt guilty at

times about having the surgery done. After this procedure she went downhill

in

many ways. But there are positives too. I guess the LBD is just taking

over. It's almost a year later and now the valve isn't working, but we have

our fingers crossed that it will. She is much more depressed than

ever. She is wondering why we had the trach put in and we have had to

explain to her that if she didn't have it she would probably have died of

pneumonia already. So that's why now I'm thinking there just can't be any

more

procedures. I'm not sure about what to do if she needs antibiotics.

Iward27663@... wrote:

Your mother has a Living will? What are her directives in it? Whatever she

wants please do it for her. One thing I would suggest right now, is ask the

doctor for morphine, to make her feel peaceful and relieve her pain.

In am so sorry you are having to deal with this.

Imogene

In a message dated 4/22/2006 4:25:15 PM Central Daylight Time,

daquilajmd@... writes:

My mom is also in a NH diagnosed with LBD. She is aware of everything

going on around her but she cannot walk, talk, go to the bathroom, eat --

pretty much just lays in bed and stares at TV waiting for our visits. My

sister

and I are there every day either both together or we take turns. Mom and

my

sister and I are and have always been best friends. We have been so lucky

in this respect. So I guess it makes it doubly hard because we miss our

mom so much. She can't talk because she has a trach for aspiration

pneumonia;

she can't eat because of the trach so has a feeding tube. Her muscles are

all gone so she can only lay in bed or sit in a high backed wheelchair for

a little while. She has a lot of pain. On April 18th she had a trach

revision done. Before this she was having trouble with her speaking valve

(a

wonderful little device which allowed her to communicate with us), but

since

the revision which was supposed to make it possible to use the valve

again she has not been able to speak -- yet. We're hoping it's just

maybe

still some swelling or something in there and that she will be able to

speak again. Anyway, she is extremely depressed now!!!!!! As if she

wasn't

before! In fact, this last surgery, I think, may have made her worse. I

told

my sister, " no more surgeries of any kind, " even if it saves her life. I

know it sounds terrible but she has no quality of life other than our

daily

visits and she's miserable and always in pain and depressed. It's just

not

her anymore. It's such a nightmare. She says she prays to God every nite

that he takes her in her sleep. I told my sister this is what I'm

planning

to do now too. I mean, I have prayed that God make her not afraid or

that

she not be in so much pain or that she not be so depressed. What would

happen if she got another infection -- she still gets pneumonia all the

time --

and we told the doctors no more antibiotics??? She is getting

" immune " or whatever to the antibiotics anyway and they have to try new

ones all the time. One of her doctors has talked to us about " comfort

care. "

I just don't know if I could or if we could do this. I mean, to p

urposely

let her go! But seeing her like this is soooo heartbreaking and I know

she

doesn't want to live this way.

What do others of you out there think about this? She has a living will.

in CT . . .

June Christensen wrote: I have

noticed

that in the 2+ months my husband has

been in the NH that several of those in the memory

care unit have shown drastic going downhill, and my

husband, who I thought was bad when he went in, has

shown improvement even though he fluctuates from day

to day. Since he has been there, three persons have

died, and one was very fiesty and almost combative

when he (my husband) first entered the home. The last

time they brought her to the DRoom to eat, she looked

like death, and I thought perhaps she had to go to the

hospital, but I saw her obituary in the paper

yesterday, so apparently she was still there when she

died. She went downhill very rapidly. Another one

who has been very talkative, walking a lot, and

generally very mobile, is now very quiet, and tonight

had an oxygen tube in her nose, sat quietly and was

not constantly calling out for her " daddy " who is her

husband. I would assume that these persons have AD as

opposed to LBD, as they were regressing steadily it

seemed. I wish there was a more definitive way to

tell if my husband has LBD, as the doctor does not

appear to think he does, even though I do.

--- Donna wrote:

> Marcie,

> This is just my opinion but, I think it is different

> because with

> LBD, the cognitive ability fluctuates. My dad's

> mind is still

> pretty good. Most days (90-95% of the time) he is

> doing pretty well

> mentally. He does have his occasional confusion but

> usually he is

> good. So, he sits and thinks about how his life

> used to be, when he

> was able to walk, drive, be on his own and not

> sitting in a

> wheelchair or laying in a NH bed. I think the LBD

> patients are much

> more AWARE of what is going on with their minds and

> their bodies and

> that is where the depression comes in. Some aren't

> able to express

> it because of communication problems but none the

> less, I think they

> are aware. Just my thoughts on the subject. Dad

> used to be a very

> outgoing person, loved to laugh and joke. Now he

> sits quiet, more

> or less speaks when he is spoken to. He doesn't

> like to get

> involved in the activities, would rather sit alone

> in his room. I

> find that very sad. I encourage him to do things

> but never force

> him. Once in a while he surprises me and goes to an

> activity with

> me. He enjoys visits from his family (especially

> his great-

> granddaughter), occasionally he will look through a

> Birds and Blooms

> magazine. He likes the bright pictures. Mostly he

> sleeps. He

> wants to be in bed most of the time only being up

> for meals. We

> have seen depression with him from the beginning, he

> thought

> he " looked funny " . After that, he wouldn't go

> anywhere. Anyway,

> just my thoughts.

> Donna Pearce

>

> --- In LBDcaregivers , " marcie9870 "

> wrote:

> >

> > Hi to all of you. As I read about your

> experiences;

> > the strength and sincere compasion to the end,the

> > endless stages and phases of each aspect of this

> > horrible disease...

> > Yet you never give less of yourself in the

> > devotion of time towards your loved ones though

> their

> > change is so dramatic and at times you must be

> exhausted;

> > my heart pours out to you all.

> > My Mom has Lewy Body diagnosed August 2005 and

> you all have

> > been so kind answering questions, lending

> support...thank you.

> >

> > Why is this disease so much worse, in my

> experiences, than

> > Alzheimer's? My mother-in-law and her twin sister

> have

> Alzheimer's

> > but both are in the same care facility but always

> upbeat,

> > have tons of energy, never quick talking,laughs

> easily...

> > and my mom is almost always depressed, teary,

> tired,difficulty

> > talking and moving; why is there such a profound

> difference?

> >

> > Thank you. My hopes are that there becomes an end

> to this tragic

> > illness.

> >

> > Marcie

> >

> > Daughter to my best friend, my Mom, in Missouri.

> >

>

__________________________________________________

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Welcome to LBDcaregivers.

April 23, 2006

My mother's living will stipulated that she not be resuscitated if her quality

of life was not going to be improved or if she would not be able to enjoy the

company of her children and friends. In May of 2005 she had the trach and

feeding tube put because of the aspiration pneumonia, which I talked about

before. She had a speaking valve that we could manage ourselves so she could

talk with us. We felt that putting in the trach and tube was not in violation

of the living will because she was supposedly going to be better off according

to the doctors and the way we understood it. My brother and sister were more

hesitant than I and since then they have felt guilty at times about having the

surgery done. After this procedure she went downhill in many ways. But there

are positives too. I guess the LBD is just taking over. It's almost a year

later and now the valve isn't working, but we have our fingers crossed that it

will. She is much more depressed than

ever. She is wondering why we had the trach put in and we have had to

explain to her that if she didn't have it she would probably have died of

pneumonia already. So that's why now I'm thinking there just can't be any more