Thank you

[Guest guest]

Hi, Ron!

Yippee! So glad to have you back!

Hugs,

Piper

**************Biggest Grammy Award surprises of all time on AOL Music.

(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\

5

48)

[Guest guest]

I hope you can hear the shout of relief all the way from Canada. Welcome back

Ron!

You've been such a vibrant, caring part of this group that I could not imagine

being here

without you.

, Oakville Ont.

Mother, age 92, died Aug. 12/06 after 13 year decline from PDD

>

> I need to thank all of you who sent me supportive messages while I

> was away from the group and also if I may explain a little of why I

> left.I never left to be a bad guy or because I was mad.I love this

> group and you guys have been my family for almost a year now.Ive

> learned that a caregiver must take care of them self to take care of

> their loved one right here on this group.Also learned of the best

> meds for mom and learned what to look for, and most importantly, Ive

> met some of the most wonderful people in the world.

>

> I left because I didnt know if it would be a good idea to post

> anymore when some here, (and im not blaming them) felt that I was

> abusing my mom by keeping her home.Everyones situation is different

> and we all have to play the hand were dealt in life.But only speaking

> for my self, I cant put my mom in the hands of strangers.When I was a

> baby she fed me when I could not eat.She clothed me and kept me

> clean, and she protected me when I could not fend for myself.Im a man

> now, and she needs help, I can not turn away or leave it to someone

> else.I do everything I do out of love for my mother and its not easy,

> but it would be much harder to stop than to keep on.

>

> As far as her well being is concerned, I cant imagine how she could

> benefit from strangers over people who love her with all of their

> entire being.

>

> I will be the first to admit Im not perfect, in fact Im probably the

> furthest from perfect on this entire group.But I know no one could

> love my mom and care for her more than I do.Just like you all love

> your lo more than anyone else could.

>

> This group of people is without question the most caring and

> wonderful people Ive ever known, and Im honored to be back.Thank you

> Ron

>

[Guest guest]

Oh, Ron! I'm so happy you are back and I so understand and agree with what

you are saying. Some folks have no choice but, when there is a choice that

can be made we all have to respect each other's decisions.

When my grandfather suffered from dementia, all his children were working

fulltime jobs and needed them to survive. They needed those jobs to feed

their families. I remember how hard it was for my mother to care for three

growing and very busy teenagers, my father, hold down a full-time job and

still manage to get to the nursing home at least once a week and, to

frequently, get called at work from the nursing home because they needed her

to handle my grandfather.

We learn so much from life's experiences. I have a front page newspaper

article here from a major New Jersey newspaper dated 1973. The article was

about my grandfather and cited his status as a disabled veteran who served

in the British Army during WWI until he got mustard gassed and they

discharged him. What did he do? He got back on his feet and enrolled in

the US Army, NY 11 Corps of Engineers and went right back to the front. The

article talked about how sad it was that his children entrusted his care to

a nursing home that nearly killed him with a drug overdose because he

wandered " and they didn't want to be bothered chasing after him. Duh! That

s why his kids put him there. They could have drugged him but they wanted

better for him.

Anyway, they found out about the drugging and transferred him to the VA

hospital where they nursed him back to physical health and then moved him to

a far better nursing home that was a much further distance from his children

What did we all learn? He had six living children. If they had set up a

schedule where they each went one day a week and varied the times they

showed up it would have been much harder for the first nursing home to abuse

him.

My mother-in-law died in a Nursing Home in Bedford, VA. It was the total

opposite of what my grandfather experienced. It was a beautiful facility

with views of the Blue Ridge Mountains from every window. The people were

so wonderful to her and so very patient with all the patients. Even with

that, my sister-in-law (who worked there) got a call one day that my

mother-in-law's room mate had been hitting her and they just found out about

it and moved her to another room. No matter how careful you are.......

As for me, I'm blessed to be able to be here for my mother. I'm blessed

that my husband and kids are willing to take this one with me. I have

visited every nursing home within an hour of here and not found one that

doesn't wreak of urine the minute you open the door. We aren't blessed with

beautiful facilities around here and I refuse to let my mother spend the

final years of her life drugged into oblivion, sitting in her own urine, and

lined up in the hallway in wheelchairs drooling with everyone else. She

would never have done that to me.

Those of you who have been blessed to find wonderful facilities for your

loved ones are truly lucky. As I said earlier, there are no right or wrong

answers here. Each family has to arrive at the right decision for their

loved one and for their family. Each answer will be unique.

I'm like Ron. While I won't be getting much sleep here after Mom moves in

(hopefully by the end of the month) I know I'll be sleeping better than I

would if she was one of the nursing homes in my area. I know that because

of what happened to my grandfather and my mother-in-law, I'd lie awake every

night wondering if she was being abused or yelled at and that is something I

just can't live with.

Gladys

-- THANK YOU

I need to thank all of you who sent me supportive messages while I

was away from the group and also if I may explain a little of why I

left.I never left to be a bad guy or because I was mad.I love this

group and you guys have been my family for almost a year now.Ive

learned that a caregiver must take care of them self to take care of

their loved one right here on this group.Also learned of the best

meds for mom and learned what to look for, and most importantly, Ive

met some of the most wonderful people in the world.

I left because I didnt know if it would be a good idea to post

anymore when some here, (and im not blaming them) felt that I was

abusing my mom by keeping her home.Everyones situation is different

and we all have to play the hand were dealt in life.But only speaking

for my self, I cant put my mom in the hands of strangers.When I was a

baby she fed me when I could not eat.She clothed me and kept me

clean, and she protected me when I could not fend for myself.Im a man

now, and she needs help, I can not turn away or leave it to someone

else.I do everything I do out of love for my mother and its not easy,

but it would be much harder to stop than to keep on.

As far as her well being is concerned, I cant imagine how she could

benefit from strangers over people who love her with all of their

entire being.

I will be the first to admit Im not perfect, in fact Im probably the

furthest from perfect on this entire group.But I know no one could

love my mom and care for her more than I do.Just like you all love

your lo more than anyone else could.

This group of people is without question the most caring and

wonderful people Ive ever known, and Im honored to be back.Thank you

Ron

Welcome to LBDcaregivers.

[Guest guest]

Welcome back Ron! You've been missed!

>

> I need to thank all of you who sent me supportive messages while

I

> was away from the group and also if I may explain a little of why I

> left.I never left to be a bad guy or because I was mad.I love this

> group and you guys have been my family for almost a year now.Ive

> learned that a caregiver must take care of them self to take care

of

> their loved one right here on this group.Also learned of the best

> meds for mom and learned what to look for, and most importantly,

Ive

> met some of the most wonderful people in the world.

>

> I left because I didnt know if it would be a good idea to post

> anymore when some here, (and im not blaming them) felt that I was

> abusing my mom by keeping her home.Everyones situation is different

> and we all have to play the hand were dealt in life.But only

speaking

> for my self, I cant put my mom in the hands of strangers.When I was

a

> baby she fed me when I could not eat.She clothed me and kept me

> clean, and she protected me when I could not fend for myself.Im a

man

> now, and she needs help, I can not turn away or leave it to someone

> else.I do everything I do out of love for my mother and its not

easy,

> but it would be much harder to stop than to keep on.

>

> As far as her well being is concerned, I cant imagine how she could

> benefit from strangers over people who love her with all of their

> entire being.

>

> I will be the first to admit Im not perfect, in fact Im probably

the

> furthest from perfect on this entire group.But I know no one could

> love my mom and care for her more than I do.Just like you all love

> your lo more than anyone else could.

>

> This group of people is without question the most caring and

> wonderful people Ive ever known, and Im honored to be back.Thank you

> Ron

>

[Guest guest]

Gladys ~

We never had a clear diagnosis of what was wrong with my mother until this

last week, and then found it was LBD. She had previously been diagnosed with

Parkinson's and depression. However, there was no improvement of the tremors

with Levodopa or any of the other dopamine meds, and we finally found a

neurologist who knew what he was doing.

Up until this point, we had been taking care of my mom in home. The new

diagnosis doesn't change our commitment to keep her in her home, in her own bed,

and beside her husband of 61 years. I could not, under any circumstances, put

my mother or my father in a nursing home or other facility. I have seen too

much. My mother is incontinent...we change her. She drools...we wipe her

mouth. As she sometimes mentally swims to the surface, we act as if she's there

all the time in our conversations with her.

I spent the night Saturday night with my parents, sleeping in a recliner

beside Mom's bed. Just before she dropped off to sleep, she had about a

one-minute period of lucidity...telling me that my daughter and son-in-law and

granddaughter were " such a sweet little family " and that my other daughter was

" so pretty " . They had all been there that afternoon and evening. I was so

grateful for that one-minute conversation...so blessed...and I had to stuff the

blanket into my mouth between answers to her so that she wouldn't hear me

crying.

I count each second with my mother as precious, even the ones where she's

seeing demons clawing at her, even the ones where she pushes me away as I'm

trying to help her get to the bathroom, even the ones when she tells me to get

out and leave her alone. Believe me...we teach our children how to love their

parents.

Jannis

Gladys Stefany wrote:

Oh, Ron! I'm so happy you are back and I so understand and agree with

what

you are saying. Some folks have no choice but, when there is a choice that

can be made we all have to respect each other's decisions.

When my grandfather suffered from dementia, all his children were working

fulltime jobs and needed them to survive. They needed those jobs to feed

their families. I remember how hard it was for my mother to care for three

growing and very busy teenagers, my father, hold down a full-time job and

still manage to get to the nursing home at least once a week and, to

frequently, get called at work from the nursing home because they needed her

to handle my grandfather.

We learn so much from life's experiences. I have a front page newspaper

article here from a major New Jersey newspaper dated 1973. The article was

about my grandfather and cited his status as a disabled veteran who served

in the British Army during WWI until he got mustard gassed and they

discharged him. What did he do? He got back on his feet and enrolled in

the US Army, NY 11 Corps of Engineers and went right back to the front. The

article talked about how sad it was that his children entrusted his care to

a nursing home that nearly killed him with a drug overdose because he

wandered " and they didn't want to be bothered chasing after him. Duh! That

s why his kids put him there. They could have drugged him but they wanted

better for him.

Anyway, they found out about the drugging and transferred him to the VA

hospital where they nursed him back to physical health and then moved him to

a far better nursing home that was a much further distance from his children

What did we all learn? He had six living children. If they had set up a

schedule where they each went one day a week and varied the times they

showed up it would have been much harder for the first nursing home to abuse

him.

My mother-in-law died in a Nursing Home in Bedford, VA. It was the total

opposite of what my grandfather experienced. It was a beautiful facility

with views of the Blue Ridge Mountains from every window. The people were

so wonderful to her and so very patient with all the patients. Even with

that, my sister-in-law (who worked there) got a call one day that my

mother-in-law's room mate had been hitting her and they just found out about

it and moved her to another room. No matter how careful you are.......

As for me, I'm blessed to be able to be here for my mother. I'm blessed

that my husband and kids are willing to take this one with me. I have

visited every nursing home within an hour of here and not found one that

doesn't wreak of urine the minute you open the door. We aren't blessed with

beautiful facilities around here and I refuse to let my mother spend the

final years of her life drugged into oblivion, sitting in her own urine, and

lined up in the hallway in wheelchairs drooling with everyone else. She

would never have done that to me.

Those of you who have been blessed to find wonderful facilities for your

loved ones are truly lucky. As I said earlier, there are no right or wrong

answers here. Each family has to arrive at the right decision for their

loved one and for their family. Each answer will be unique.

I'm like Ron. While I won't be getting much sleep here after Mom moves in

(hopefully by the end of the month) I know I'll be sleeping better than I

would if she was one of the nursing homes in my area. I know that because

of what happened to my grandfather and my mother-in-law, I'd lie awake every

night wondering if she was being abused or yelled at and that is something I

just can't live with.

Gladys

-- THANK YOU

I need to thank all of you who sent me supportive messages while I

was away from the group and also if I may explain a little of why I

left.I never left to be a bad guy or because I was mad.I love this

group and you guys have been my family for almost a year now.Ive

learned that a caregiver must take care of them self to take care of

their loved one right here on this group.Also learned of the best

meds for mom and learned what to look for, and most importantly, Ive

met some of the most wonderful people in the world.

I left because I didnt know if it would be a good idea to post

anymore when some here, (and im not blaming them) felt that I was

abusing my mom by keeping her home.Everyones situation is different

and we all have to play the hand were dealt in life.But only speaking

for my self, I cant put my mom in the hands of strangers.When I was a

baby she fed me when I could not eat.She clothed me and kept me

clean, and she protected me when I could not fend for myself.Im a man

now, and she needs help, I can not turn away or leave it to someone

else.I do everything I do out of love for my mother and its not easy,

but it would be much harder to stop than to keep on.

As far as her well being is concerned, I cant imagine how she could

benefit from strangers over people who love her with all of their

entire being.

I will be the first to admit Im not perfect, in fact Im probably the

furthest from perfect on this entire group.But I know no one could

love my mom and care for her more than I do.Just like you all love

your lo more than anyone else could.

This group of people is without question the most caring and

wonderful people Ive ever known, and Im honored to be back.Thank you

Ron

Welcome to LBDcaregivers.

[Guest guest]

I agree, Jannis

I was also struck by a part of your post that really hit home with me.

>>As she sometimes mentally swims to the surface, we act as if she's there

all the time in our conversations with her.<<

Oh, yes....... I don't know if its a blessing or a curse that, with LBD,

they do come back occasionally. Those times can, sometimes, be painful for

Mom because she becomes with it enough to know she's not with it and that

hurts her. On the other hand, its like a welcome visit from a long lost

loved one when I get to talk to " her " again.

About a month ago , I brought my mother over to show her the progress on the

rooms we're adding for her. She didn't respond much and her face had that

LBD flat expression on it. I took her home not knowing if she liked it or

not. All of a sudden, she looked up at me and said " I'm happy. " I hugged

her and said " and that makes me happy! " She said " No, you don't understand.

I'm ME and I'm happy. " I almost cried right then and there. A moment

later, she was gone again like someone pulled down a window shade. What a

gift that one moment was. I will treasure the memory of it on those dark

days when she is " away " and the woman who takes her place is not all that

pleasant all the time.

Gladys

[Guest guest]

Ron,

Seems like Emma is having all the fun.

Glad to have you back!

Did you check out the photos of Millie's Manatees?

That is about the most fun I have been having.

Millie seems to be suffereing some slippage.

She can't listen as fast, and her speech is fading.

Ultram had taken care of all of her pain.

There's my 2 cents!

I am forewarned about scary episodes now! Thanks to Emma!

I did see some manatee poop yesterday, and some manatee snot the last

time I was out.

Emma, it's like old times!

Carol

>

> I need to thank all of you who sent me supportive messages while

I

> was away from the group and also if I may explain a little of why I

> left.I never left to be a bad guy or because I was mad.I love this

> group and you guys have been my family for almost a year now.Ive

> learned that a caregiver must take care of them self to take care

of

> their loved one right here on this group.Also learned of the best

> meds for mom and learned what to look for, and most importantly,

Ive

> met some of the most wonderful people in the world.

>

> I left because I didnt know if it would be a good idea to post

> anymore when some here, (and im not blaming them) felt that I was

> abusing my mom by keeping her home.Everyones situation is different

> and we all have to play the hand were dealt in life.But only

speaking

> for my self, I cant put my mom in the hands of strangers.When I was

a

> baby she fed me when I could not eat.She clothed me and kept me

> clean, and she protected me when I could not fend for myself.Im a

man

> now, and she needs help, I can not turn away or leave it to someone

> else.I do everything I do out of love for my mother and its not

easy,

> but it would be much harder to stop than to keep on.

>

> As far as her well being is concerned, I cant imagine how she could

> benefit from strangers over people who love her with all of their

> entire being.

>

> I will be the first to admit Im not perfect, in fact Im probably

the

> furthest from perfect on this entire group.But I know no one could

> love my mom and care for her more than I do.Just like you all love

> your lo more than anyone else could.

>

> This group of people is without question the most caring and

> wonderful people Ive ever known, and Im honored to be back.Thank you

> Ron

>

[Guest guest]

Ron,

Welcome back. Loving your Mom with your entire being vs a stranger ius

exactly how I feel. It doesn't resonate with everyone that way, but it

does for many caregivers. The aides I have filling in don't get it

entirely either but it's not about them. It's about me and my Mom. Love

is the most important thing in this world.

THANK YOU

I need to thank all of you who sent me supportive messages while I

was away from the group and also if I may explain a little of why I

left.I never left to be a bad guy or because I was mad.I love this

group and you guys have been my family for almost a year now.Ive

learned that a caregiver must take care of them self to take care of

their loved one right here on this group.Also learned of the best

meds for mom and learned what to look for, and most importantly, Ive

met some of the most wonderful people in the world.

I left because I didnt know if it would be a good idea to post

anymore when some here, (and im not blaming them) felt that I was

abusing my mom by keeping her home.Everyones situation is different

and we all have to play the hand were dealt in life.But only speaking

for my self, I cant put my mom in the hands of strangers.When I was a

baby she fed me when I could not eat.She clothed me and kept me

clean, and she protected me when I could not fend for myself.Im a man

now, and she needs help, I can not turn away or leave it to someone

else.I do everything I do out of love for my mother and its not easy,

but it would be much harder to stop than to keep on.

As far as her well being is concerned, I cant imagine how she could

benefit from strangers over people who love her with all of their

entire being.

I will be the first to admit Im not perfect, in fact Im probably the

furthest from perfect on this entire group.But I know no one could

love my mom and care for her more than I do.Just like you all love

your lo more than anyone else could.

This group of people is without question the most caring and

wonderful people Ive ever known, and Im honored to be back.Thank you

Ron

[Guest guest]

Piper,,

Every time I see a message from you I mean to ask about how are you doing? You

are supportive of everyone and by the time I get to your message, some time as

passed and I keep thinking I will ask the next time you write. Then I do it all

over again.

SO, how are you?

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: THANK YOU

Hi, Ron!

Yippee! So glad to have you back!

Hugs,

Piper

**************Biggest Grammy Award surprises of all time on AOL Music.

(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\

5

48)

[Guest guest]

Dear Dena, Lynn, Dianne, , Courage, Sandie and ,

We are just getting back in town from the funeral services. I just

wanted to thank all of you who sent me a note and for the prayers and

well wishes.

Sorry I am not responding to each individually, but your words are much

appreciated. Thanks for your support.

I hope I haven't missed anyone...but there is a lot going on on the

board.

Take care,

Daughter of Bill, 92

[Guest guest]

You seem to be on a very fast track, but with kids in the house that

may be a blessing.

My doctor told us that once they give up, it will go very quickly.

It is such a nasty disease, and the less the kids have to see at the

very end, the better.

Not that we could do anything to stop it. This is so hard on all

concerned.

Go with what you're given, and learn all you can from the experience,

I guess. That seems to be the message my little heart keeps giving

me.

God bless,

carol

-- In LBDcaregivers , " kbellomyrees "

wrote:

>

> It may take awhile to catch on, sometimes I say that this disease

is

> catchy, cause it seems I remember less and less and learn slower

and

> slower. We have had an " official " diagnosis of LBD since Jan.

2004.

> In March 2003, we got a diagnosis of dementia/possibly AD. Prior

to

> that in April 2002, she was diagnosed with breast cancer.

> Unfortunatley, just over a year earlier she was called away from

her

> mammogram because my father-in law was being transported to the ER

> for a nosebleed. They didn't feel it was anything important,

however

> he suffered a stroke 2 weeks later and after 5 and 1/2 weeks

passed.

> She has been through the wringer and since realizing 4-6 weeks ago

> that she will not recover from LBD, she has given up mentally and I

> have noticed a rapid decline in all abilities. She is being

treated

> by a primary care MD, a geritrician and an oncology surgeon. As

she

> progressed rapidly in Dec. 2003 it was decided that a neuro consult

> wouldn't be necessary. I wonder. I have had to educate ER

physicians

> and others about this LBD. She has moved to daytime IC and

> argumentative, psuedo independece and sleeps 15-18 hours, 9pm to

mid

> afternoon. Can't get her to the center, aides don't show for

bathing

> and I have an 8 yo son and 13 yo daughter. I didn't expect such

> rapid progression, should I have?

>