My Daddy

August 5, 2008

Wejcaustin, I understand feeling heartbroken. I don't think you are

over-reacting. My father has LBD. He is older than your Daddy and

can still hold a conversation and get around, but my heart has been

breaking for years now, ever since his troubles become obvious. When

I think about my father it takes only seconds for the tears to start

flowing. Last time I saw him I couldn't help myself and cried in

front of him. I'm starting counselling soon.

Angie

>

> I saw my Daddy today. He isn't talking now--he didn't recognize me!

My

> husband doesn't seem to understand my pain! My sister described it

> best " our hearts are broken " --is this a normal feeling? Are we over

> reacting? My Daddy is only 67--he can't move or feed himself. He was

> such a strong man! I wonder he knows what is going on around him--

his

> eyes follow me but he doesn't respond.

> I am so mad! Why would God do this to a good Daddy????

>

August 5, 2008

Wejcaustin, I understand feeling heartbroken. I don't think you are

over-reacting. My father has LBD. He is older than your Daddy and

can still hold a conversation and get around, but my heart has been

breaking for years now, ever since his troubles become obvious. When

I think about my father it takes only seconds for the tears to start

flowing. Last time I saw him I couldn't help myself and cried in

front of him. I'm starting counselling soon.

Angie

>

> I saw my Daddy today. He isn't talking now--he didn't recognize me!

My

> husband doesn't seem to understand my pain! My sister described it

> best " our hearts are broken " --is this a normal feeling? Are we over

> reacting? My Daddy is only 67--he can't move or feed himself. He was

> such a strong man! I wonder he knows what is going on around him--

his

> eyes follow me but he doesn't respond.

> I am so mad! Why would God do this to a good Daddy????

>

August 5, 2008

Wejcaustin, I understand feeling heartbroken. I don't think you are

over-reacting. My father has LBD. He is older than your Daddy and

can still hold a conversation and get around, but my heart has been

breaking for years now, ever since his troubles become obvious. When

I think about my father it takes only seconds for the tears to start

flowing. Last time I saw him I couldn't help myself and cried in

front of him. I'm starting counselling soon.

Angie

>

> I saw my Daddy today. He isn't talking now--he didn't recognize me!

My

> husband doesn't seem to understand my pain! My sister described it

> best " our hearts are broken " --is this a normal feeling? Are we over

> reacting? My Daddy is only 67--he can't move or feed himself. He was

> such a strong man! I wonder he knows what is going on around him--

his

> eyes follow me but he doesn't respond.

> I am so mad! Why would God do this to a good Daddy????

>

August 5, 2008

When my dad ( 88LBD ) started blowing food out of his mouth I was totally

clueless as to why untill someone told me to feed him something else when he

started doing that. It seems like LBD patients suddenly get tired of their

favorite foods one day then like them again the next---who knows why???

Sometimes though, he's just not hungry at all so I'll try again in an hour

or two---sometimes it works--sometimes not.It gets real frustrating at times

but that's life in Lewyville. Good luck.

August 14, 2008

My Mama has decided not to have another feeding tube placed in my Daddy.

I have mixed emotions--I know that this was his wish but I hate to

think of him hungry. He is drinking some boost milkshakes but he isn't

taking any other food. He has an IV with liquids and antibiotics. He

is still in the nursing home. I wonder how long he can survive without

a feeding tube--I also know that his life is really already over!

It is almost 11:00 p.m. and I need to go to bed--but I just can't seem

to rest. I will need to be ready for my students in the morning but I

can't make myself go to bed. I am 42 years old---I should be able to

deal with this stage of my life. I still feel like Daddy's baby girl!

Please pray for me and my Daddy!

August 14, 2008

I ache for you. My stepmother elected to have my daddy's

ventilator pulled and to withhold further treatment - he lived only a few

more hours - 10 years ago (I was 41), and it was the most difficult thing in

my life. I think that we're all " daddy's girls " , and have a bond with the

first man in our life that is unique and very very strong. Even though you

know that he is really struggling, saying goodbye - whether it's this week

or 3 months or a year down the road - isn't any easier...

I just wanted to let you know that I feel as well as hear your words, and I

understand...I'm praying that God will put His arms around you all and hold

you in His love as you go through the next stage of this.

His,

Sherry

www.owly.net

daughter of , (mis?)diagnosed with AD in 2005, descent slowed by

Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my

house. We're learning to live with Lewy...

----- Original Message -----

> My Mama has decided not to have another feeding tube placed in my Daddy.

> I have mixed emotions--I know that this was his wish but I hate to

> think of him hungry. He is drinking some boost milkshakes but he isn't

> taking any other food. He has an IV with liquids and antibiotics. He

> is still in the nursing home. I wonder how long he can survive without

> a feeding tube--I also know that his life is really already over!

>

> It is almost 11:00 p.m. and I need to go to bed--but I just can't seem

> to rest. I will need to be ready for my students in the morning but I

> can't make myself go to bed. I am 42 years old---I should be able to

> deal with this stage of my life. I still feel like Daddy's baby girl!

>

> Please pray for me and my Daddy!

August 14, 2008

jennifer,

your mom opting to not put another feeding tube in is following your dads wishes

and yuo are not happy seeinghim slowly being taken away by lbd nor is he happy

being trapped in a body and mind that doesnt seem like his.

now let me tell you about me for a little bit, and i dont mean to make light of

anything you said he is getting fluids and iv antibiotics. right now. well i

have been in the hosp for 6-8 weeks at a time, and as long as i was on fluids

and iv antibiotics i didnt feel like eating and if i was 'forced' to eat i would

throw it up if i wanted something it was usually a drink, i felt dehydreated

dry thraot dry lips etc, food was the last thing on my mind that is where i lost

20 of my 40 lbs. now please dont think of your dad is starving, when you are

that ill you dont feel hungry, the things that get to him now are feeling wet

and dirty from unclean diapers etc.

i wish there were words to take away your pain, you lost your daddy a long time

ago as a daddy now you aer losing his body, and boht are horrible losses. spend

what time you can talk to him, deep in his mind and heart he knows you are

there, share funny stories, share silly stories share sad stories, share life

stories. bring memories to your fore front and then share them with him, no

matter how drugged i was even knocking on deaiths door x 2 i was well aware taht

who was around me who said what who did what just love him hold his hand it may

be warm if may be cold but he will feel your warmth and love, tell him all teh

thins you wish you would have told him the apologizes for mouthing off to him

when you were 8 years ol and he has long forgotten but you hadnet, clear the

air, fill the air with love, if he likces plants descirbe the plants you saw

outside, if he has a very favorite pet, talk to him about his pet fluffy was

running around on the

slippery kitchen floor and got so dizzy she slid across the room and walked

like she was drunk she wasnt hurt but it was funny. do you remember the time we

all went to the grandcanyon and cousin joey hid on us and we htought he was

lost, remember when you tired to teach me out to ride a two wheeler and my knees

and elbows looked like they were full of pebbles from all teh road, i must ahve

found every pebble on the block, something will provoke a smile a blink a turn

of the head, a gigle, a sniffle, sometype of repsonse it worked for daddy. just

dont think they cant hear as for me near death 3 times in 2 different hospitals

i heard everything good bad adn ugly so only good talk in room, anything else

behind closed doors. bring careds to hang up in room, bring fresh flowers if

allowed to remind him of his garden whatever it takes to reach down and maek

him nappy not easy for you, but so much better for him happy thought s for him

as he prepares

himself to go to the next step on his journey good luck and hugs. sharon .

Subject: Re: My Daddy

To: LBDcaregivers

Date: Friday, August 15, 2008, 4:03 AM

I ache for you. My stepmother elected to have my daddy's

ventilator pulled and to withhold further treatment - he lived only a few

more hours - 10 years ago (I was 41), and it was the most difficult thing in

my life. I think that we're all " daddy's girls " , and have a bond with the

first man in our life that is unique and very very strong. Even though you

know that he is really struggling, saying goodbye - whether it's this week

or 3 months or a year down the road - isn't any easier...

I just wanted to let you know that I feel as well as hear your words, and I

understand.. .I'm praying that God will put His arms around you all and hold

you in His love as you go through the next stage of this.

His,

Sherry

www.owly.net

daughter of , (mis?)diagnosed with AD in 2005, descent slowed by

Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my

house. We're learning to live with Lewy...

----- Original Message -----

From: " wejcaustin " <wejcaustinyahoo (DOT) com>

> My Mama has decided not to have another feeding tube placed in my Daddy.

> I have mixed emotions--I know that this was his wish but I hate to

> think of him hungry. He is drinking some boost milkshakes but he isn't

> taking any other food. He has an IV with liquids and antibiotics. He

> is still in the nursing home. I wonder how long he can survive without

> a feeding tube--I also know that his life is really already over!

>

> It is almost 11:00 p.m. and I need to go to bed--but I just can't seem

> to rest. I will need to be ready for my students in the morning but I

> can't make myself go to bed. I am 42 years old---I should be able to

> deal with this stage of my life. I still feel like Daddy's baby girl!

>

> Please pray for me and my Daddy!

August 15, 2008

Hi, ,

My heart aches for you and your family that you are having to deal with

this. My father took a similar path at the end of his LBD journey. It is a

very

hard thing to deal with when you are watching it, but I don't really think

they feel hungry. The body gets to a certain point where it just can't take

food. The Hospice nurse explained to me that when the body no longer needs

food, it actually may increase the patient's suffering when a feeding tube is

used. It is essentially forcing food into a body that does not need it. I

know it is a hard decision to make, but when our LBD loved ones reach a certain

point, it is the natural course of things.

No matter how old you are, losing a loved one to LBD this way is a trauma.

No one should ever have to " handle " it. You and your family will be in my

thoughts and prayers.

Love and hugs from another Daddy's girl,

Piper

Caregiver for Dad, , misdiagnosed with Alz. in 1998, diagnosed with

LBD in 2000, passed away from LBD in March 2006.

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August 18, 2008

Thank you, Sharon!

Helene

From: Helene GM <hgm54yahoo (DOT) com>

Subject: Re: My Daddy

To: LBDcaregivers@ yahoogroups. com

Date: Monday, August 18, 2008, 12:44 AM

Dear ,

Thank you for your lovely welcome. The waters are getting more

difficult to navigate indeed. It is hard finding the time for my

brothers to communicate, so there are times that I do feel alone. We

all do the best we can.... My aunt is also a force to be reckoned

with, and I try to work with what I've got, not to antagonize.

Looking back, there are so many things that I should have recognized,

but didn't... and I should have put my foot down about things long

ago too, but that is all water under the bridge.

I know things will get more difficult, but I will hang in there....

I'm trying to suggest to my aunt that it's time to get someone in to

help with my mother. My aunt of course says that Mom doesn't want

anyone there that she isn't familiar with. I suggested that since

she has someone local in mind, that she try to have her come in a few

hours while my aunt is still there. I pointed out that when a

physical therapist came to the house (the paltry twice a week for one

month that Oxford paid for) my Mom liked her and it was fine.

Baby steps.

Thanks for listening,

Helene

> >

> > Hello all,

> > I am a newcomer to the group. I'm crying as I read this series

of

> > posts. My mom is 74, and we figure (my brothers and I) that

she's

> > had LBD for the last 7 years. One of my brothers brought up the

> > diagnosis of LBD, and after a while, her doctor concurred. She

is

> > still living at home about 25 miles and a bridge away - my aunt

(also

> > not a youngster) goes to care for her daily; she is still as

sharp as

> > a tack. I go up on weekends to help out. My father in law, 88,

has

> > had Alzheimer's for about 2 years now. They

> >

> > I echo a lot of the emotions I am reading about. My Mom has not

had

> > an easy life, and is such a good person, and I wonder - why

should

> > something like this happen to her? But we push on, and try as

best

> > we can to keep her at home, which is where she loves to be the

most.

> > Years ago, we tried to have her sell her house and move to an

> > apartment within walking distance of my aunt - but that never

> > happened - and sometimes it is hard to deal with family..... my

aunt

> > always supported her efforts to stay in the house. Now when

> > something happens to something in the house, we get a phone call,

or

> > one of my brothers who lives in NJ gets a phone call. It is not

> > easy. But, we keep on keeping on.

> >

> > It was a struggle to get the durable POA, but about a year and a

half

> > ago, we managed to get that done. There are lots of other

matters

> > that were never taken care of, and these will have to get handled

> > with a lot of hassle, eventually.. .. these are lessons learned,

and

> > when our kids are done with school, we will do the durable POA,

and

> > all the other things that go along with it.

> >

> > I was happy to read about the Lewy Mouse.... eventually one day,

I

> > pray that LBD can be conquered. It seems that so much research

has

> > gone into Alzheimer's and so little into LBD.... and yet there

are so

> > many people that have had a family member affected by LBD. I

wish

> > there were some alternative choices for people with LBD, rather

than

> > take aricept and namenda..... I've read about a new drug

entering a

> > phase 3 clinical trial (I believe, if memory serves me correctly)

> > called " Dimebon, " again for Alzheimer's patients... Wish there

ws a

> > way to give that one a try for LBD; it sounded pretty good.

Anyone

> > have any info on this?

> >

> > In the meantime, I have learned to take one day at a time, one

phone

> > call at a time... and recently took up yoga. It has helped a

lot. I

> > still cry a lot, but then again, I am the type of person that

cries

> > when watching sentimental commercials!

> >

> > Regards to all,

> >

> > Helene

> > Long Island, New York

> >

>

August 18, 2008

Welcome to the group Helene,

This darned disease is so hard on all involved. I, too, used to cry a lot at

the beginning stages and eventually learned to roll with this disease. The

crying became less but the sadness for my mom remained. I hope that in time you

and your siblings will be able to work toward getting your mom better situated.

It must be very hard on all of you seeing that you are dealing with LBD and AD.

Perhaps its time to look into Assisted Living or a LTCF for your mom and

step-dad?

Best,

Courage

Re: My Daddy

Hello all,

I am a newcomer to the group. I'm crying as I read this series of

posts. My mom is 74, and we figure (my brothers and I) that she's

had LBD for the last 7 years. One of my brothers brought up the

diagnosis of LBD, and after a while, her doctor concurred. She is

still living at home about 25 miles and a bridge away - my aunt (also

not a youngster) goes to care for her daily; she is still as sharp as

a tack. I go up on weekends to help out. My father in law, 88, has

had Alzheimer's for about 2 years now. They

I echo a lot of the emotions I am reading about. My Mom has not had

an easy life, and is such a good person, and I wonder - why should

something like this happen to her? But we push on, and try as best

we can to keep her at home, which is where she loves to be the most.

Years ago, we tried to have her sell her house and move to an

apartment within walking distance of my aunt - but that never

happened - and sometimes it is hard to deal with family..... my aunt

always supported her efforts to stay in the house. Now when

something happens to something in the house, we get a phone call, or

one of my brothers who lives in NJ gets a phone call. It is not

easy. But, we keep on keeping on.

It was a struggle to get the durable POA, but about a year and a half

ago, we managed to get that done. There are lots of other matters

that were never taken care of, and these will have to get handled

with a lot of hassle, eventually.... these are lessons learned, and

when our kids are done with school, we will do the durable POA, and

all the other things that go along with it.

I was happy to read about the Lewy Mouse.... eventually one day, I

pray that LBD can be conquered. It seems that so much research has

gone into Alzheimer's and so little into LBD.... and yet there are so

many people that have had a family member affected by LBD. I wish

there were some alternative choices for people with LBD, rather than

take aricept and namenda..... I've read about a new drug entering a

phase 3 clinical trial (I believe, if memory serves me correctly)

called " Dimebon, " again for Alzheimer's patients... Wish there ws a

way to give that one a try for LBD; it sounded pretty good. Anyone

have any info on this?

In the meantime, I have learned to take one day at a time, one phone

call at a time... and recently took up yoga. It has helped a lot. I

still cry a lot, but then again, I am the type of person that cries

when watching sentimental commercials!

Regards to all,

Helene

Long Island, New York

> >

> > I saw my Daddy today. He isn't talking now--he didn't recognize

me!

> My

> > husband doesn't seem to understand my pain! My sister described it

> > best " our hearts are broken " --is this a normal feeling? Are we

over

> > reacting? My Daddy is only 67--he can't move or feed himself. He

was

> > such a strong man! I wonder he knows what is going on around him--

> his

> > eyes follow me but he doesn't respond.

> > I am so mad! Why would God do this to a good Daddy????

> >

>

August 18, 2008

Hi,

My Mom doesn't have the funds needed for assisted living - and she'd need an

aide with her anyhow. She really loves to be at home - she is comfortable, she

usually knows where everything is...etc. etc.

My father-in-law has AD - my mother in law is managing right now - when the time

comes, they will bring in help and/or look at assisted living.

I know what you mean about the sadness - it is always there - but I am learning

to deal with it - even after 7 years, it's hard sometimes.

Thank you for your kind words,

Helene

" Courage doesn't always roar. Sometimes courage is the quiet voice at

the end of the day saying, " I will try again tomorrow. "

Anne Radmacher

Subject: Re: Re: My Daddy

To: LBDcaregivers

Date: Monday, August 18, 2008, 9:28 AM

Welcome to the group Helene,

This darned disease is so hard on all involved. I, too, used to cry a lot at the

beginning stages and eventually learned to roll with this disease. The crying

became less but the sadness for my mom remained. I hope that in time you and

your siblings will be able to work toward getting your mom better situated. It

must be very hard on all of you seeing that you are dealing with LBD and AD.

Perhaps its time to look into Assisted Living or a LTCF for your mom and

step-dad?

Best,

Courage

Re: My Daddy

Hello all,

I am a newcomer to the group. I'm crying as I read this series of

posts. My mom is 74, and we figure (my brothers and I) that she's

had LBD for the last 7 years. One of my brothers brought up the

diagnosis of LBD, and after a while, her doctor concurred. She is

still living at home about 25 miles and a bridge away - my aunt (also

not a youngster) goes to care for her daily; she is still as sharp as

a tack. I go up on weekends to help out. My father in law, 88, has

had Alzheimer's for about 2 years now. They

I echo a lot of the emotions I am reading about. My Mom has not had

an easy life, and is such a good person, and I wonder - why should

something like this happen to her? But we push on, and try as best

we can to keep her at home, which is where she loves to be the most.

Years ago, we tried to have her sell her house and move to an

apartment within walking distance of my aunt - but that never

happened - and sometimes it is hard to deal with family..... my aunt

always supported her efforts to stay in the house. Now when

something happens to something in the house, we get a phone call, or

one of my brothers who lives in NJ gets a phone call. It is not

easy. But, we keep on keeping on.

It was a struggle to get the durable POA, but about a year and a half

ago, we managed to get that done. There are lots of other matters

that were never taken care of, and these will have to get handled

with a lot of hassle, eventually.. .. these are lessons learned, and