Re: Gladys: Who was that woman?

[Guest guest]

I mean this from the bottom of my heart. Any good that is in me was put

there by her. She has had a VERY hard life. I won't go into the details

here because its not the place. My only disappointment was that when Dad

died (and I did love him) I hoped she'd finally have some peace for another

ten years or more. It was not meant to be. I try not to dwell on it.

I think of two Bible verses whenever I start to thing negatively. The first

is " Count it all joy. " 1:2 I believe that admonition was given to us

to help us. When we start counting it as joy even if we don't feel it and

we continue to do it sooner or later, we feel joyful. LOL I know you all

think I'm Pollyanna. LOL

The other verse is Romans 8:28 " ALL things work together for good to those

who know the Lord. " When my daughter developed kidney cancer at the age of

2 this is the verse that got me through it. On those days when I couldn't

even begin to count it as joy, knowing in my heart that good would come of

it got me through the day.

Gladys

-- Gladys: Who was that woman?

Gladys,

Wow, that was wonderfully, lovingly written!! Your mom is blessed,

and it is obvious she is a very important part of who you are today. I pray

for each of you, and I pray that if I come to that point, I will be

surrounded by the type of love your mother has. It brought tears, of joy,

of laughter, of sadness.

Bye for now,

Lucille

Gladys Stefany wrote:

I closed out 2007 by arriving at my mother's house at around 10:00 PM. I've

been to that house almost daily for the past two years and yet, somehow, it

didn't seem like my mother's house. All of my adult life I have referred to

my Mom as " Mrs. Felix Unger " ( " Odd Couple " ). There has never been a speck

of dust to be found in her house and you could always, literally, eat off

her floors. In all my life (53 years) I've never seen anything out of place

and she has NEVER gone to bed without every dish washed and neatly put away.

So, perhaps it was the dirty TV dinner tray with the fork still in it on

the dining room table that made the house seem strange, or the large plastic

trash bag spilling onto the kitchen floor, or the shredded pieces of paper

towels on the dark green countertop, or the clothes haphazardly dumped on

her closet shelf? This couldn't be my mother's house.

I went into the living room to find this teeny tiny frail little " wiffet " of

a woman fully dressed (in the same clothes she had on for about 36 hours)

and sound asleep on her couch. The sound of her breathing filled the room

as she has a horrible cold and can't take anything for it due to the

interaction of cold medicines with all the other medications she is taking

for her LBD. Every light was on and the TV was blaring away. This woman

couldn't be my mother. My mother would never be able to sleep until

everything was in place, she'd have had a shower and put on a clean

nightgown, turned out the lights, locked all the doors, etc. I IM'd my

hubby to see if he thought I should just let this woman be or move her to

her bed. We decided to just let her be. I turned off the lights and the TV

and crawled onto the air mattress my sister, my daughter, and I sleep on

when we take turns sleeping at Mom's house.

I tossed and turned for about two hours and finally drifted off to sleep.

At around 2:00 in the morning, the first face I saw in 2008 turned out to be

that same little wiffet of a woman. She turned on the ceiling light and

called my name. She seemed to be very agitated. I asked what was wrong.

She was rather upset because she woke up and decided to move to her bed but

there was a man and a little boy in the bed and they refused to move! I got

up and went into her room and yelled at the man and the boy. I told them

that unless they were going to pay rent, they needed to move out. The tiny

lady laughed, smiled at me, and said " They are on the couch now. Thank you "

I helped her into her nightgown (she has trouble telling which is the neck

hole and which are the arm holes) and I literally tucked her into bed,

kissed her goodnight, and told her I was going to shut the door so that the

man and the boy would leave her alone and that I would be sure they didn't

bother her for the rest of the night. I returned to the air mattress for

another couple hours of tossing and turning. I was sure that it would only

be 2 or 3 hours before the teeny tiny woman returned. This woman couldn't

be my mother. My mother is not a frail teeny tiny woman who shuffles slowly

when she walks and frequently has to catch herself from falling. My mother

is athletic. She always has been. She has exercised faithfully and watched

her diet every day of her life. At 70, she still walked several miles a day

biked several miles a day, and swam for an hour every day. This women is

only 6 years older than my mother and she can't even make her bed because

the thin bedspread is too heavy for her to handle. This woman never walks

alone and even then, after only a short walk sleeps for hours. This woman

spends most of her day sleeping. This woman couldn't be my mother. My

mother would NEVER allow us to help her dress, handle her medications, or

help her make her bed. My mother is far too proud to do that. This woman

couldn't be my mother. This woman can't figure out how to enter anything in

her check book nor how to read a calendar. My mother kept the books for an

entire school system by hand before computers and calculators. This woman

couldn't be my mother.

Then, she came back to the door and called my name softly. She said " You're

breathing doesn't sound good. I'm worried about you. " (I have a sinus

infection.) Then I knew that this little woman is, indeed, my mother. She

is a much smaller, sweeter, funnier, warmer version of my mother, but she is

my mother. She still worries about her children (all three of them). She

is still the woman who gave birth to me, nursed me through the mumps, the

chicken pox, my hospitalization with the measles, changed my poopie diapers

with a smile, and cleaned up my vomit without complaint. She is still the

woman who taught me how to ride a bike, how to ice skate, how to spell, and

how to reach out to others in need. She is still the woman who bandaged

countless skinned knees, worked a full time job, drove my two sisters and I

to Brownie and Girl Scout meetings, and to music lessons (after fighting

with my father to get us those lessons). She is still the woman who worked

all day and stayed up late at night ironing our dresses (yes, we grew up in

the dark ages when you weren't allowed to wear pants to public school and no

" permapress " had not yet been invented), kept an immaculate house, and

helped us with our homework. She is still the same woman who went to more

elementary school band concerts than anyone should ever be subjected to.

She is the same woman who fought with our father so that we could go on

dates and so that we could go to college. She is still the woman who was

there the day I had surgery for what we thought was a tubal pregnancy and is

now my 25 year old daughter. She is still the same woman who took countless

days off from work to drive into New York City with me when my then two year

old needed chemotherapy. (Mom's routine was to smile at me and at Ruthie

all day long and then, when she was alone, give into the nausea and the

headache that came from the emotional days of treatment. ) She is still the

same woman who strove meticulously over the years to treat each and every

grandchild equally (it didn't matter to her if they were adopted or

biological). If one child got a dollar in a Halloween card, they all got a

dollar in a Halloween card. She is still the same woman who had brain

surgery without telling any of her children because she didn't want to worry

them. She is still the same woman who has maintained all of her adult life

that she never wanted to be a burden to any of us.

Though LBD has taken much of her away, I realized in the early hours of the

new year, that her last wish has come true. She is NOT a burden to any of

us. She is a blessing to us. Caring for her is not a burden. It is a

privilege. Was my mother the perfect mother? No There is no such thing.

Were there times in our past when we didn't get along and said or did things

that hurt each other? Are we human? However, when it comes to " keeping

score " (which some of my relatives seem to need to do) we have to be sure to

look at the whole tally. The things I've listed here are but a small

percentage of the many blessings my mother has brought into my life. I don

t feel burdened and I know my sister and my daughter do not feel burdened

either. This little woman is warm and affectionate, appreciative, loving,

and funny. This phase of her life is, in some ways, the one I cherish most

because one of the nice things about LBD is that the patients can't hide

their emotions anymore behind the walls of scars live builds in all of us.

They are who they are in their purest form. To be able to give back to her

just a portion of what she has given to me is truly a blessing. My father

died very suddenly and unexpectedly and I did not have the opportunity I am

having now to just be with my mother and enjoy each other's company. On

those days when she is with it, we have conversations that are very

meaningful and are unlike any we have ever had before. She still loves all

of her children and suffers with a terribly broken heart due to her

estrangement from one of them. Even in her delirium, she will sometimes

look up, mention her name, and say " I guess I'll never see her again..... "

and a sadness that I can only imagine washes over her face. She would still

do anything for her grandchildren and still finds her greatest joy in life

in the faces of her four GORGEOUS great-grandchildren (none are mine......

sigh....... but I enjoy them just the same!)

Burdened? NO! Blessed? YES! I feel sorry for those who have chosen to

keep score of only the negatives and are missing out on the opportunity to

enjoy my mother in this precious time of her life. I am so happy that my

score keeping is honest so that I can see how much the blessings have

outweighed the problems we have had. We must cherish these times because we

know the course this disease will take and how it will probably end.

I wish you all the happiest and healthiest of new years and I pray that God

will make clear the blessings in a life that can be very difficult at times.

I thank all the LBD patients on this list for all you have taught me and I

thank the caregivers on the list for all the great information and all the

support. I thank God for giving me the opportunity to spend this time with

my Mom. It is my prayer that all who know her will put their petty issues

aside and enjoy the blessings for they are fleeting all too quickly away.

She is my mother and I am VERY proud of the grace (no pun intended) and

dignity with which she is accepting and handing a disease which has always

been the biggest fear of her life.

Happy New Year!

Gladys Stefany VERY proud daughter of

Grace C (Lewy Bodies Dementia patient)

[Guest guest]

Thank you for your additional post. One of the great things about the internet

is the ability to get to know people we could not possibly have met in person.

Bye for now,

Gloria

Gladys Stefany wrote:

I mean this from the bottom of my heart. Any good that is in me was

put

there by her. She has had a VERY hard life. I won't go into the details

here because its not the place. My only disappointment was that when Dad

died (and I did love him) I hoped she'd finally have some peace for another

ten years or more. It was not meant to be. I try not to dwell on it.

I think of two Bible verses whenever I start to thing negatively. The first

is " Count it all joy. " 1:2 I believe that admonition was given to us

to help us. When we start counting it as joy even if we don't feel it and

we continue to do it sooner or later, we feel joyful. LOL I know you all

think I'm Pollyanna. LOL

The other verse is Romans 8:28 " ALL things work together for good to those

who know the Lord. " When my daughter developed kidney cancer at the age of

2 this is the verse that got me through it. On those days when I couldn't

even begin to count it as joy, knowing in my heart that good would come of

it got me through the day.

Gladys

-- Gladys: Who was that woman?

Gladys,

Wow, that was wonderfully, lovingly written!! Your mom is blessed,

and it is obvious she is a very important part of who you are today. I pray

for each of you, and I pray that if I come to that point, I will be

surrounded by the type of love your mother has. It brought tears, of joy,

of laughter, of sadness.

Bye for now,

Lucille

Gladys Stefany wrote:

I closed out 2007 by arriving at my mother's house at around 10:00 PM. I've

been to that house almost daily for the past two years and yet, somehow, it

didn't seem like my mother's house. All of my adult life I have referred to

my Mom as " Mrs. Felix Unger " ( " Odd Couple " ). There has never been a speck

of dust to be found in her house and you could always, literally, eat off

her floors. In all my life (53 years) I've never seen anything out of place

and she has NEVER gone to bed without every dish washed and neatly put away.

So, perhaps it was the dirty TV dinner tray with the fork still in it on

the dining room table that made the house seem strange, or the large plastic

trash bag spilling onto the kitchen floor, or the shredded pieces of paper

towels on the dark green countertop, or the clothes haphazardly dumped on

her closet shelf? This couldn't be my mother's house.

I went into the living room to find this teeny tiny frail little " wiffet " of

a woman fully dressed (in the same clothes she had on for about 36 hours)

and sound asleep on her couch. The sound of her breathing filled the room

as she has a horrible cold and can't take anything for it due to the

interaction of cold medicines with all the other medications she is taking

for her LBD. Every light was on and the TV was blaring away. This woman

couldn't be my mother. My mother would never be able to sleep until

everything was in place, she'd have had a shower and put on a clean

nightgown, turned out the lights, locked all the doors, etc. I IM'd my

hubby to see if he thought I should just let this woman be or move her to

her bed. We decided to just let her be. I turned off the lights and the TV

and crawled onto the air mattress my sister, my daughter, and I sleep on

when we take turns sleeping at Mom's house.

I tossed and turned for about two hours and finally drifted off to sleep.

At around 2:00 in the morning, the first face I saw in 2008 turned out to be

that same little wiffet of a woman. She turned on the ceiling light and

called my name. She seemed to be very agitated. I asked what was wrong.

She was rather upset because she woke up and decided to move to her bed but

there was a man and a little boy in the bed and they refused to move! I got

up and went into her room and yelled at the man and the boy. I told them

that unless they were going to pay rent, they needed to move out. The tiny

lady laughed, smiled at me, and said " They are on the couch now. Thank you "

I helped her into her nightgown (she has trouble telling which is the neck

hole and which are the arm holes) and I literally tucked her into bed,

kissed her goodnight, and told her I was going to shut the door so that the

man and the boy would leave her alone and that I would be sure they didn't

bother her for the rest of the night. I returned to the air mattress for

another couple hours of tossing and turning. I was sure that it would only

be 2 or 3 hours before the teeny tiny woman returned. This woman couldn't

be my mother. My mother is not a frail teeny tiny woman who shuffles slowly

when she walks and frequently has to catch herself from falling. My mother

is athletic. She always has been. She has exercised faithfully and watched

her diet every day of her life. At 70, she still walked several miles a day

biked several miles a day, and swam for an hour every day. This women is

only 6 years older than my mother and she can't even make her bed because

the thin bedspread is too heavy for her to handle. This woman never walks

alone and even then, after only a short walk sleeps for hours. This woman

spends most of her day sleeping. This woman couldn't be my mother. My

mother would NEVER allow us to help her dress, handle her medications, or

help her make her bed. My mother is far too proud to do that. This woman

couldn't be my mother. This woman can't figure out how to enter anything in

her check book nor how to read a calendar. My mother kept the books for an

entire school system by hand before computers and calculators. This woman

couldn't be my mother.

Then, she came back to the door and called my name softly. She said " You're

breathing doesn't sound good. I'm worried about you. " (I have a sinus

infection.) Then I knew that this little woman is, indeed, my mother. She

is a much smaller, sweeter, funnier, warmer version of my mother, but she is

my mother. She still worries about her children (all three of them). She

is still the woman who gave birth to me, nursed me through the mumps, the

chicken pox, my hospitalization with the measles, changed my poopie diapers

with a smile, and cleaned up my vomit without complaint. She is still the

woman who taught me how to ride a bike, how to ice skate, how to spell, and

how to reach out to others in need. She is still the woman who bandaged

countless skinned knees, worked a full time job, drove my two sisters and I

to Brownie and Girl Scout meetings, and to music lessons (after fighting

with my father to get us those lessons). She is still the woman who worked

all day and stayed up late at night ironing our dresses (yes, we grew up in

the dark ages when you weren't allowed to wear pants to public school and no

" permapress " had not yet been invented), kept an immaculate house, and

helped us with our homework. She is still the same woman who went to more

elementary school band concerts than anyone should ever be subjected to.

She is the same woman who fought with our father so that we could go on

dates and so that we could go to college. She is still the woman who was

there the day I had surgery for what we thought was a tubal pregnancy and is

now my 25 year old daughter. She is still the same woman who took countless

days off from work to drive into New York City with me when my then two year

old needed chemotherapy. (Mom's routine was to smile at me and at Ruthie

all day long and then, when she was alone, give into the nausea and the

headache that came from the emotional days of treatment. ) She is still the

same woman who strove meticulously over the years to treat each and every

grandchild equally (it didn't matter to her if they were adopted or

biological). If one child got a dollar in a Halloween card, they all got a

dollar in a Halloween card. She is still the same woman who had brain

surgery without telling any of her children because she didn't want to worry

them. She is still the same woman who has maintained all of her adult life

that she never wanted to be a burden to any of us.

Though LBD has taken much of her away, I realized in the early hours of the

new year, that her last wish has come true. She is NOT a burden to any of

us. She is a blessing to us. Caring for her is not a burden. It is a

privilege. Was my mother the perfect mother? No There is no such thing.

Were there times in our past when we didn't get along and said or did things

that hurt each other? Are we human? However, when it comes to " keeping

score " (which some of my relatives seem to need to do) we have to be sure to

look at the whole tally. The things I've listed here are but a small

percentage of the many blessings my mother has brought into my life. I don

t feel burdened and I know my sister and my daughter do not feel burdened

either. This little woman is warm and affectionate, appreciative, loving,

and funny. This phase of her life is, in some ways, the one I cherish most

because one of the nice things about LBD is that the patients can't hide

their emotions anymore behind the walls of scars live builds in all of us.

They are who they are in their purest form. To be able to give back to her

just a portion of what she has given to me is truly a blessing. My father

died very suddenly and unexpectedly and I did not have the opportunity I am

having now to just be with my mother and enjoy each other's company. On

those days when she is with it, we have conversations that are very

meaningful and are unlike any we have ever had before. She still loves all

of her children and suffers with a terribly broken heart due to her

estrangement from one of them. Even in her delirium, she will sometimes

look up, mention her name, and say " I guess I'll never see her again..... "

and a sadness that I can only imagine washes over her face. She would still

do anything for her grandchildren and still finds her greatest joy in life

in the faces of her four GORGEOUS great-grandchildren (none are mine......

sigh....... but I enjoy them just the same!)

Burdened? NO! Blessed? YES! I feel sorry for those who have chosen to

keep score of only the negatives and are missing out on the opportunity to

enjoy my mother in this precious time of her life. I am so happy that my

score keeping is honest so that I can see how much the blessings have

outweighed the problems we have had. We must cherish these times because we

know the course this disease will take and how it will probably end.

I wish you all the happiest and healthiest of new years and I pray that God

will make clear the blessings in a life that can be very difficult at times.

I thank all the LBD patients on this list for all you have taught me and I

thank the caregivers on the list for all the great information and all the

support. I thank God for giving me the opportunity to spend this time with

my Mom. It is my prayer that all who know her will put their petty issues

aside and enjoy the blessings for they are fleeting all too quickly away.

She is my mother and I am VERY proud of the grace (no pun intended) and

dignity with which she is accepting and handing a disease which has always

been the biggest fear of her life.

Happy New Year!

Gladys Stefany VERY proud daughter of

Grace C (Lewy Bodies Dementia patient)

[Guest guest]

This was absolutely lovely! I identified with your era, and perma

press and no pants to school. My own mother was very much like your

mother, and I lost her over 30 years ago. I thought all mothers were

supposed to be like that, and learning that it is not so was an

icredible shock!

I poke fun at Millie's situation only to break the tension of the

task of having someone's life literally in your hands.

Millie was an extremely distant and cold woman who has softened some

with her dementia.

I know if my husband and his brothers would have had a mother as

wonderful as yours, 8 marriages (only three sons) would have been

extremely different.

Millie was at our house for about 30 minutes and was terrible to her

oldest son. He tries to care and be helpful but she just won't let

him.

Ours is a strange situation in that the boys 54,56,58, want to

embrace the cactus, thorns and all, but continally are reduced to

mere children in her presence. It is so sad to watch.

The lack of nuturing the boys grew up with has turned their hearts,

and as much as they would like to be closer, they just can't always

rise above a mother who would never check on them when they were

sick, and lived by the philosophy that if it is your day to die,

you'll die.

they are dutiful sons, and I know they try as hard as they can, but I

know I will be the primary caregiver to shield my husband from more

and more hurt.

When Millie gets less able to lash out, they may be able to get

closer, but while she still has to bite every time she is with them,

they feel powerless. In her house they are still her kids.

Millie's husband was the nurturer and he has been gone over 15 years.

The boys honor their mother, but they remain shy in embracing her

while she still lashes out so venomously.

You are certainly blessed,

Carol

> I closed out 2007 by arriving at my mother's house at around 10:00

PM. I've

> been to that house almost daily for the past two years and yet,

somehow, it

> didn't seem like my mother's house. All of my adult life I have

referred to

> my Mom as " Mrs. Felix Unger " ( " Odd Couple " ). There has never been a

speck

> of dust to be found in her house and you could always, literally,

eat off

> her floors. In all my life (53 years) I've never seen anything out

of place

> and she has NEVER gone to bed without every dish washed and neatly

put away.

> So, perhaps it was the dirty TV dinner tray with the fork still in

it on

> the dining room table that made the house seem strange, or the

large plastic

> trash bag spilling onto the kitchen floor, or the shredded pieces

of paper

> towels on the dark green countertop, or the clothes haphazardly

dumped on

> her closet shelf? This couldn't be my mother's house.

>

> I went into the living room to find this teeny tiny frail

little " wiffet " of

> a woman fully dressed (in the same clothes she had on for about 36

hours)

> and sound asleep on her couch. The sound of her breathing filled

the room

> as she has a horrible cold and can't take anything for it due to the

> interaction of cold medicines with all the other medications she is

taking

> for her LBD. Every light was on and the TV was blaring away. This

woman

> couldn't be my mother. My mother would never be able to sleep until

> everything was in place, she'd have had a shower and put on a clean

> nightgown, turned out the lights, locked all the doors, etc. I IM'd

my

> hubby to see if he thought I should just let this woman be or move

her to

> her bed. We decided to just let her be. I turned off the lights and

the TV

> and crawled onto the air mattress my sister, my daughter, and I

sleep on

> when we take turns sleeping at Mom's house.

>

> I tossed and turned for about two hours and finally drifted off to

sleep.

> At around 2:00 in the morning, the first face I saw in 2008 turned

out to be

> that same little wiffet of a woman. She turned on the ceiling light

and

> called my name. She seemed to be very agitated. I asked what was

wrong.

> She was rather upset because she woke up and decided to move to her

bed but

> there was a man and a little boy in the bed and they refused to

move! I got

> up and went into her room and yelled at the man and the boy. I told

them

> that unless they were going to pay rent, they needed to move out.

The tiny

> lady laughed, smiled at me, and said " They are on the couch now.

Thank you "

> I helped her into her nightgown (she has trouble telling which is

the neck

> hole and which are the arm holes) and I literally tucked her into

bed,

> kissed her goodnight, and told her I was going to shut the door so

that the

> man and the boy would leave her alone and that I would be sure they

didn't

> bother her for the rest of the night. I returned to the air

mattress for

> another couple hours of tossing and turning. I was sure that it

would only

> be 2 or 3 hours before the teeny tiny woman returned. This woman

couldn't

> be my mother. My mother is not a frail teeny tiny woman who

shuffles slowly

> when she walks and frequently has to catch herself from falling. My

mother

> is athletic. She always has been. She has exercised faithfully and

watched

> her diet every day of her life. At 70, she still walked several

miles a day

> biked several miles a day, and swam for an hour every day. This

women is

> only 6 years older than my mother and she can't even make her bed

because

> the thin bedspread is too heavy for her to handle. This woman never

walks

> alone and even then, after only a short walk sleeps for hours. This

woman

> spends most of her day sleeping. This woman couldn't be my mother.

My

> mother would NEVER allow us to help her dress, handle her

medications, or

> help her make her bed. My mother is far too proud to do that. This

woman

> couldn't be my mother. This woman can't figure out how to enter

anything in

> her check book nor how to read a calendar. My mother kept the books

for an

> entire school system by hand before computers and calculators. This

woman

> couldn't be my mother.

>

> Then, she came back to the door and called my name softly. She

said " You're

> breathing doesn't sound good. I'm worried about you. " (I have a

sinus

> infection.) Then I knew that this little woman is, indeed, my

mother. She

> is a much smaller, sweeter, funnier, warmer version of my mother,

but she is

> my mother. She still worries about her children (all three of

them). She

> is still the woman who gave birth to me, nursed me through the

mumps, the

> chicken pox, my hospitalization with the measles, changed my poopie

diapers

> with a smile, and cleaned up my vomit without complaint. She is

still the

> woman who taught me how to ride a bike, how to ice skate, how to

spell, and

> how to reach out to others in need. She is still the woman who

bandaged

> countless skinned knees, worked a full time job, drove my two

sisters and I

> to Brownie and Girl Scout meetings, and to music lessons (after

fighting

> with my father to get us those lessons). She is still the woman who

worked

> all day and stayed up late at night ironing our dresses (yes, we

grew up in

> the dark ages when you weren't allowed to wear pants to public

school and no

> " permapress " had not yet been invented), kept an immaculate house,

and

> helped us with our homework. She is still the same woman who went

to more

> elementary school band concerts than anyone should ever be

subjected to.

> She is the same woman who fought with our father so that we could

go on

> dates and so that we could go to college. She is still the woman

who was

> there the day I had surgery for what we thought was a tubal

pregnancy and is

> now my 25 year old daughter. She is still the same woman who took

countless

> days off from work to drive into New York City with me when my then

two year

> old needed chemotherapy. (Mom's routine was to smile at me and at

Ruthie

> all day long and then, when she was alone, give into the nausea and

the

> headache that came from the emotional days of treatment. ) She is

still the

> same woman who strove meticulously over the years to treat each and

every

> grandchild equally (it didn't matter to her if they were adopted or

> biological). If one child got a dollar in a Halloween card, they

all got a

> dollar in a Halloween card. She is still the same woman who had

brain

> surgery without telling any of her children because she didn't want

to worry

> them. She is still the same woman who has maintained all of her

adult life

> that she never wanted to be a burden to any of us.

>

> Though LBD has taken much of her away, I realized in the early

hours of the

> new year, that her last wish has come true. She is NOT a burden to

any of

> us. She is a blessing to us. Caring for her is not a burden. It is a

> privilege. Was my mother the perfect mother? No There is no such

thing.

> Were there times in our past when we didn't get along and said or

did things

> that hurt each other? Are we human? However, when it comes

to " keeping

> score " (which some of my relatives seem to need to do) we have to

be sure to

> look at the whole tally. The things I've listed here are but a small

> percentage of the many blessings my mother has brought into my

life. I don

> t feel burdened and I know my sister and my daughter do not feel

burdened

> either. This little woman is warm and affectionate, appreciative,

loving,

> and funny. This phase of her life is, in some ways, the one I

cherish most

> because one of the nice things about LBD is that the patients can't

hide

> their emotions anymore behind the walls of scars live builds in all

of us.

> They are who they are in their purest form. To be able to give back

to her

> just a portion of what she has given to me is truly a blessing. My

father

> died very suddenly and unexpectedly and I did not have the

opportunity I am

> having now to just be with my mother and enjoy each other's

company. On

> those days when she is with it, we have conversations that are very

> meaningful and are unlike any we have ever had before. She still

loves all

> of her children and suffers with a terribly broken heart due to her

> estrangement from one of them. Even in her delirium, she will

sometimes

> look up, mention her name, and say " I guess I'll never see her

again..... "

> and a sadness that I can only imagine washes over her face. She

would still

> do anything for her grandchildren and still finds her greatest joy

in life

> in the faces of her four GORGEOUS great-grandchildren (none are

mine......

> sigh....... but I enjoy them just the same!)

>

> Burdened? NO! Blessed? YES! I feel sorry for those who have chosen

to

> keep score of only the negatives and are missing out on the

opportunity to

> enjoy my mother in this precious time of her life. I am so happy

that my

> score keeping is honest so that I can see how much the blessings

have

> outweighed the problems we have had. We must cherish these times

because we

> know the course this disease will take and how it will probably end.

>

> I wish you all the happiest and healthiest of new years and I pray

that God

> will make clear the blessings in a life that can be very difficult

at times.

> I thank all the LBD patients on this list for all you have taught

me and I

> thank the caregivers on the list for all the great information and

all the

> support. I thank God for giving me the opportunity to spend this

time with

> my Mom. It is my prayer that all who know her will put their petty

issues

> aside and enjoy the blessings for they are fleeting all too quickly

away.

>

> She is my mother and I am VERY proud of the grace (no pun intended)

and

> dignity with which she is accepting and handing a disease which has

always

> been the biggest fear of her life.

>

> Happy New Year!

>

> Gladys Stefany VERY proud daughter of

> Grace C (Lewy Bodies Dementia patient)

>

>

[Guest guest]

It sounds like your husband and his brothers are wonderful men!

(((HUGS)))

Gladys

-- Re: Gladys: Who was that woman?

This was absolutely lovely! I identified with your era, and perma

press and no pants to school. My own mother was very much like your

mother, and I lost her over 30 years ago. I thought all mothers were

supposed to be like that, and learning that it is not so was an

icredible shock!

I poke fun at Millie's situation only to break the tension of the

task of having someone's life literally in your hands.

Millie was an extremely distant and cold woman who has softened some

with her dementia.

I know if my husband and his brothers would have had a mother as

wonderful as yours, 8 marriages (only three sons) would have been

extremely different.

Millie was at our house for about 30 minutes and was terrible to her

oldest son. He tries to care and be helpful but she just won't let

him.

Ours is a strange situation in that the boys 54,56,58, want to

embrace the cactus, thorns and all, but continally are reduced to

mere children in her presence. It is so sad to watch.

The lack of nuturing the boys grew up with has turned their hearts,

and as much as they would like to be closer, they just can't always

rise above a mother who would never check on them when they were

sick, and lived by the philosophy that if it is your day to die,

you'll die.

they are dutiful sons, and I know they try as hard as they can, but I

know I will be the primary caregiver to shield my husband from more

and more hurt.

When Millie gets less able to lash out, they may be able to get

closer, but while she still has to bite every time she is with them,

they feel powerless. In her house they are still her kids.

Millie's husband was the nurturer and he has been gone over 15 years.

The boys honor their mother, but they remain shy in embracing her

while she still lashes out so venomously.

You are certainly blessed,

Carol

> I closed out 2007 by arriving at my mother's house at around 10:00

PM. I've

> been to that house almost daily for the past two years and yet,

somehow, it

> didn't seem like my mother's house. All of my adult life I have

referred to

> my Mom as " Mrs. Felix Unger " ( " Odd Couple " ). There has never been a

speck

> of dust to be found in her house and you could always, literally,

eat off

> her floors. In all my life (53 years) I've never seen anything out

of place

> and she has NEVER gone to bed without every dish washed and neatly

put away.

> So, perhaps it was the dirty TV dinner tray with the fork still in

it on

> the dining room table that made the house seem strange, or the

large plastic

> trash bag spilling onto the kitchen floor, or the shredded pieces

of paper

> towels on the dark green countertop, or the clothes haphazardly

dumped on

> her closet shelf? This couldn't be my mother's house.

>

> I went into the living room to find this teeny tiny frail

little " wiffet " of

> a woman fully dressed (in the same clothes she had on for about 36

hours)

> and sound asleep on her couch. The sound of her breathing filled

the room

> as she has a horrible cold and can't take anything for it due to the

> interaction of cold medicines with all the other medications she is

taking

> for her LBD. Every light was on and the TV was blaring away. This

woman

> couldn't be my mother. My mother would never be able to sleep until

> everything was in place, she'd have had a shower and put on a clean

> nightgown, turned out the lights, locked all the doors, etc. I IM'd

my

> hubby to see if he thought I should just let this woman be or move

her to

> her bed. We decided to just let her be. I turned off the lights and

the TV

> and crawled onto the air mattress my sister, my daughter, and I

sleep on

> when we take turns sleeping at Mom's house.

>

> I tossed and turned for about two hours and finally drifted off to

sleep.

> At around 2:00 in the morning, the first face I saw in 2008 turned

out to be

> that same little wiffet of a woman. She turned on the ceiling light

and

> called my name. She seemed to be very agitated. I asked what was

wrong.

> She was rather upset because she woke up and decided to move to her

bed but

> there was a man and a little boy in the bed and they refused to

move! I got

> up and went into her room and yelled at the man and the boy. I told

them

> that unless they were going to pay rent, they needed to move out.

The tiny

> lady laughed, smiled at me, and said " They are on the couch now.

Thank you "

> I helped her into her nightgown (she has trouble telling which is

the neck

> hole and which are the arm holes) and I literally tucked her into

bed,

> kissed her goodnight, and told her I was going to shut the door so

that the

> man and the boy would leave her alone and that I would be sure they

didn't

> bother her for the rest of the night. I returned to the air

mattress for

> another couple hours of tossing and turning. I was sure that it

would only

> be 2 or 3 hours before the teeny tiny woman returned. This woman

couldn't

> be my mother. My mother is not a frail teeny tiny woman who

shuffles slowly

> when she walks and frequently has to catch herself from falling. My

mother

> is athletic. She always has been. She has exercised faithfully and

watched

> her diet every day of her life. At 70, she still walked several

miles a day

> biked several miles a day, and swam for an hour every day. This

women is

> only 6 years older than my mother and she can't even make her bed

because

> the thin bedspread is too heavy for her to handle. This woman never

walks

> alone and even then, after only a short walk sleeps for hours. This

woman

> spends most of her day sleeping. This woman couldn't be my mother.

My

> mother would NEVER allow us to help her dress, handle her

medications, or

> help her make her bed. My mother is far too proud to do that. This

woman

> couldn't be my mother. This woman can't figure out how to enter

anything in

> her check book nor how to read a calendar. My mother kept the books

for an

> entire school system by hand before computers and calculators. This

woman

> couldn't be my mother.

>

> Then, she came back to the door and called my name softly. She

said " You're

> breathing doesn't sound good. I'm worried about you. " (I have a

sinus

> infection.) Then I knew that this little woman is, indeed, my

mother. She

> is a much smaller, sweeter, funnier, warmer version of my mother,

but she is

> my mother. She still worries about her children (all three of

them). She

> is still the woman who gave birth to me, nursed me through the

mumps, the

> chicken pox, my hospitalization with the measles, changed my poopie

diapers

> with a smile, and cleaned up my vomit without complaint. She is

still the

> woman who taught me how to ride a bike, how to ice skate, how to

spell, and

> how to reach out to others in need. She is still the woman who

bandaged

> countless skinned knees, worked a full time job, drove my two

sisters and I

> to Brownie and Girl Scout meetings, and to music lessons (after

fighting

> with my father to get us those lessons). She is still the woman who

worked

> all day and stayed up late at night ironing our dresses (yes, we

grew up in

> the dark ages when you weren't allowed to wear pants to public

school and no

> " permapress " had not yet been invented), kept an immaculate house,

and

> helped us with our homework. She is still the same woman who went

to more

> elementary school band concerts than anyone should ever be

subjected to.

> She is the same woman who fought with our father so that we could

go on

> dates and so that we could go to college. She is still the woman

who was

> there the day I had surgery for what we thought was a tubal

pregnancy and is

> now my 25 year old daughter. She is still the same woman who took

countless

> days off from work to drive into New York City with me when my then

two year

> old needed chemotherapy. (Mom's routine was to smile at me and at

Ruthie

> all day long and then, when she was alone, give into the nausea and

the

> headache that came from the emotional days of treatment. ) She is

still the

> same woman who strove meticulously over the years to treat each and

every

> grandchild equally (it didn't matter to her if they were adopted or

> biological). If one child got a dollar in a Halloween card, they

all got a

> dollar in a Halloween card. She is still the same woman who had

brain

> surgery without telling any of her children because she didn't want

to worry

> them. She is still the same woman who has maintained all of her

adult life

> that she never wanted to be a burden to any of us.

>

> Though LBD has taken much of her away, I realized in the early

hours of the

> new year, that her last wish has come true. She is NOT a burden to

any of

> us. She is a blessing to us. Caring for her is not a burden. It is a

> privilege. Was my mother the perfect mother? No There is no such

thing.

> Were there times in our past when we didn't get along and said or

did things

> that hurt each other? Are we human? However, when it comes

to " keeping

> score " (which some of my relatives seem to need to do) we have to

be sure to

> look at the whole tally. The things I've listed here are but a small

> percentage of the many blessings my mother has brought into my

life. I don

> t feel burdened and I know my sister and my daughter do not feel

burdened

> either. This little woman is warm and affectionate, appreciative,

loving,

> and funny. This phase of her life is, in some ways, the one I

cherish most

> because one of the nice things about LBD is that the patients can't

hide

> their emotions anymore behind the walls of scars live builds in all

of us.

> They are who they are in their purest form. To be able to give back

to her

> just a portion of what she has given to me is truly a blessing. My

father

> died very suddenly and unexpectedly and I did not have the

opportunity I am

> having now to just be with my mother and enjoy each other's

company. On

> those days when she is with it, we have conversations that are very

> meaningful and are unlike any we have ever had before. She still

loves all

> of her children and suffers with a terribly broken heart due to her

> estrangement from one of them. Even in her delirium, she will

sometimes

> look up, mention her name, and say " I guess I'll never see her

again..... "

> and a sadness that I can only imagine washes over her face. She

would still

> do anything for her grandchildren and still finds her greatest joy

in life

> in the faces of her four GORGEOUS great-grandchildren (none are

mine......

> sigh....... but I enjoy them just the same!)

>

> Burdened? NO! Blessed? YES! I feel sorry for those who have chosen

to

> keep score of only the negatives and are missing out on the

opportunity to

> enjoy my mother in this precious time of her life. I am so happy

that my

> score keeping is honest so that I can see how much the blessings

have

> outweighed the problems we have had. We must cherish these times

because we

> know the course this disease will take and how it will probably end.

>

> I wish you all the happiest and healthiest of new years and I pray

that God

> will make clear the blessings in a life that can be very difficult

at times.

> I thank all the LBD patients on this list for all you have taught

me and I

> thank the caregivers on the list for all the great information and

all the

> support. I thank God for giving me the opportunity to spend this

time with

> my Mom. It is my prayer that all who know her will put their petty

issues

> aside and enjoy the blessings for they are fleeting all too quickly

away.

>

> She is my mother and I am VERY proud of the grace (no pun intended)

and

> dignity with which she is accepting and handing a disease which has

always

> been the biggest fear of her life.

>

> Happy New Year!

>

> Gladys Stefany VERY proud daughter of

> Grace C (Lewy Bodies Dementia patient)

>

>

[Guest guest]

I try to poke fun at the weird situations here because

the change in Grandma from this disease has been a

change for the meaner rather than sweeter. Grandma

was an elementary school teacher (and before that a

dairy farmer's wife) for a LONG time and although she

was never very physically affectionate us grandkids

always knew she loved us. She played games with us,

colored, cooked us nice food, always had a smile and a

laugh, and every once in a while you might get a hug.

She was always the caregiver, the strong one. She

took care of my uncle when he was sick with cancer and

she cared for grandpa when he was sick with lung

disease. She even came over to my mother's house

weekly and did the laundry and cleaned so that mom

wouldn't have to. She traveled after she was retired

(walking trips in England and Scotland), was in the

local county band, and exercised every day.

Now she is tired and angry and mean SOO much of the

time. She can't seem to think about anything except

in a negative way. I think the change from being

careGIVER to careHAVER has been too difficult for her.

She can care for others with ease but letting someone

else care for her is too much. LBD has robbed her of

the desire to do anything and yet although she can't

express it I think she remembers in some way that she

used to be a very active person.

She has started to eat a little more (yesterday we got

in 1 pancake, 1/2 a sandwich at lunch, 1/2 a sandwich

at dinner) but still not enough for me not to worry.

We're taking her to the doctor this afternoon just so

we can keep him in the loop. I really don't think

theres much he can do since its pretty clear there

isn't anything PHYSICAL wrong. Nothing new anyway.

But maybe if HE tells her she has to eat and drink

more it will help a little. And of course we'll have

her tested for UTI again just in case.

But she is eating a little, I got her in the shower 2

days in a row (!!!!), and she is giving clear evidence

that she is VERY not constipated anymore for the

moment. Small victories and probably fleeting ones

but victories none the less.

Emma

PS Getting the car stuck in the foot deep snow in the

driveway wasn't nearly as funny as I had thought it

would be yesterday when I had to pay the tow guy $65

to get it back out this morning. ;-)

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[Guest guest]

hi emma -- sorry to hear about your tow and the $$ for it -- but soooo glad to

read your earlier post about bra shopping! i know how therapeutic that can be.

xo

anna

Re: Gladys: Who was that woman?

I try to poke fun at the weird situations

here because

the change in Grandma from this disease has been a

change for the meaner rather than sweeter. Grandma

was an elementary school teacher (and before that a

dairy farmer's wife) for a LONG time and although she

was never very physically affectionate us grandkids

always knew she loved us. She played games with us,

colored, cooked us nice food, always had a smile and a

laugh, and every once in a while you might get a hug.

She was always the caregiver, the strong one. She

took care of my uncle when he was sick with cancer and

she cared for grandpa when he was sick with lung

disease. She even came over to my mother's house

weekly and did the laundry and cleaned so that mom

wouldn't have to. She traveled after she was retired

(walking trips in England and Scotland), was in the

local county band, and exercised every day.

Now she is tired and angry and mean SOO much of the

time. She can't seem to think about anything except

in a negative way. I think the change from being

careGIVER to careHAVER has been too difficult for her.

She can care for others with ease but letting someone

else care for her is too much. LBD has robbed her of

the desire to do anything and yet although she can't

express it I think she remembers in some way that she

used to be a very active person.

She has started to eat a little more (yesterday we got

in 1 pancake, 1/2 a sandwich at lunch, 1/2 a sandwich

at dinner) but still not enough for me not to worry.

We're taking her to the doctor this afternoon just so

we can keep him in the loop. I really don't think

theres much he can do since its pretty clear there

isn't anything PHYSICAL wrong. Nothing new anyway.

But maybe if HE tells her she has to eat and drink

more it will help a little. And of course we'll have

her tested for UTI again just in case.

But she is eating a little, I got her in the shower 2

days in a row (!!!!), and she is giving clear evidence

that she is VERY not constipated anymore for the

moment. Small victories and probably fleeting ones

but victories none the less.

Emma

PS Getting the car stuck in the foot deep snow in the

driveway wasn't nearly as funny as I had thought it

would be yesterday when I had to pay the tow guy $65

to get it back out this morning. ;-)

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