I told Jim's brother about the Ultram, and he wasn't at all upset.

[Guest guest]

It did keep her out of pain, and that was our biggest issue.

The boys know that Millie will die within a week, and they are okay

with all that I have done on their mother's behalf.

She is getting ativan, which I was able to avoid up to this point,

and yet it seems to slow the ride to a comfortable speed.

I am probably having the biggest problem because I was so proactive.

The boys are relieved to see an end in sight, and I can't say I blame

them.

It has been a long time since their mom has had any real quality of

life.

I have been asking God to guide my life, and I can't beat myself up

about Ultram, as it did an important job, and I have to believe God

was guiding me, albeit, not a direction I would have taken knowing

what I know now, but it is okay, she is almost off the ride.

The urine has a good deal of blood in it, and she hates the catheter,

but with the morphine and ativan, she couldn't be trusted walking to

her bathroom.

The boys have decided on graveside only, and a closed casket.

My son's will probably do the service, like they did for my dad three

years ago.

Last night I spent the night with Millie, and will do the same

tonight.

Daytime is pretty pleasant around here, but if she should stir, I

know she'd like a family face.

Last night when I leaned close to hear what she was saying to me, she

raised up and kissed me on the cheek! How could I not stay?

What else would I be doing, anyway?

So, everybody is fine with the Ultram, and even if it turned out to

be a bad idea, it brought things to a close more quickly. God would

have intervened and hit me with a brick if He wasn't ready to let her

slip out of this life.

Millie looks like an end of life shell! I know it will be very hard

for my husband when he sees her tomorrow.

He is having a really tough time coming to Hospice.

He had a rough time with his Dad, and didn't want to be in the room

as he passed.

I know I fought a good fight with the Lewy Bodies, and I have to

remember, I gave her months in her home she wouldn't have had

otherwise.

I have called her favorite niece so she can come visit her while she

is still alive, if she wishes.

I think the family would like a small funeral, and is not encouraging

lots of relatives to spend hours on the road to come for a 15 minute

service.

I seems a shame to embalm just to have a closed casket.

All of her siblings are gone, and so it is a much more private event.

I am just thinking on paper, to see what is in my head.

Ultram may have been the ultimate blessing for Millie.

I know I will post more later tonight.

I am doing fine, and Millie seeems very comfortable.

Carol

[Guest guest]

Carol,

Thank you for sharing this with us. You absolutely have done the best and most

loving things for Millie. That's been clear in all your messages, and in this

one, too. What a tremendous gift that kiss is! From all these miles away, never

meeting you or Millie, but " knowing " you through your posts, Millie is aware of

your love for her and is loving you too.

You are right: you have fought that " good fight " and provided comfort and

tenderness at home for her.

All of us will keep you, your family and Millie in our thoughts and prayers

during the days to come.

Lin

adhd5464 wrote:

It did keep her out of pain, and that was our biggest issue.

The boys know that Millie will die within a week, and they are okay

with all that I have done on their mother's behalf.

She is getting ativan, which I was able to avoid up to this point,

and yet it seems to slow the ride to a comfortable speed.

I am probably having the biggest problem because I was so proactive.

The boys are relieved to see an end in sight, and I can't say I blame

them.

It has been a long time since their mom has had any real quality of

life.

I have been asking God to guide my life, and I can't beat myself up

about Ultram, as it did an important job, and I have to believe God

was guiding me, albeit, not a direction I would have taken knowing

what I know now, but it is okay, she is almost off the ride.

The urine has a good deal of blood in it, and she hates the catheter,

but with the morphine and ativan, she couldn't be trusted walking to

her bathroom.

The boys have decided on graveside only, and a closed casket.

My son's will probably do the service, like they did for my dad three

years ago.

Last night I spent the night with Millie, and will do the same

tonight.

Daytime is pretty pleasant around here, but if she should stir, I

know she'd like a family face.

Last night when I leaned close to hear what she was saying to me, she

raised up and kissed me on the cheek! How could I not stay?

What else would I be doing, anyway?

So, everybody is fine with the Ultram, and even if it turned out to

be a bad idea, it brought things to a close more quickly. God would

have intervened and hit me with a brick if He wasn't ready to let her

slip out of this life.

Millie looks like an end of life shell! I know it will be very hard

for my husband when he sees her tomorrow.

He is having a really tough time coming to Hospice.

He had a rough time with his Dad, and didn't want to be in the room

as he passed.

I know I fought a good fight with the Lewy Bodies, and I have to

remember, I gave her months in her home she wouldn't have had

otherwise.

I have called her favorite niece so she can come visit her while she

is still alive, if she wishes.

I think the family would like a small funeral, and is not encouraging

lots of relatives to spend hours on the road to come for a 15 minute

service.

I seems a shame to embalm just to have a closed casket.

All of her siblings are gone, and so it is a much more private event.

I am just thinking on paper, to see what is in my head.

Ultram may have been the ultimate blessing for Millie.

I know I will post more later tonight.

I am doing fine, and Millie seeems very comfortable.

Carol

Welcome to LBDcaregivers.

[Guest guest]

Carol,

My heart goes out to you and Millie!

Please don't think that you did anything wrong re: asking for Millie to have

Ultram. Some of our LO's here are taking it just fine and if I knew about it I

would have asked that my mom take it instead of the opiods she was given. Dr.

Boeve also recommends that it be taken as well. It isn't necessarily a " bad "

med. I went through our archives and found this that wrote about Ultram:

>

> I have to really wonder about the Darvon.

>

> Darvon (propoxyphene) is a downright dangerous drug, and it's

flagged

> as a Potentially Inappropriate Medication in the Beers Criteria

going

> back at least one revision. (citation: Fick DM, JW, Wade WE

et

> al. Updating the Beers criteria for potentially inappropriate

> medication use in older adults: results of a US consensus panel of

> experts. Arch Intern Med. 2003; 163:271624.))

>

> It's no more effective than Tylenol, and is really not advised for

use

> in the elderly.

>

> Ultram might be better. There's a long-acting version as well if

> multiple pills per day are a problem.

>

> And Gomperts is right - Tylenol on a schedule is the basis of many

> effective pain control programs. 3000-4000mg/day, divided dose, to

> keep pain from escalating out of control.

>

>

As you can see wasn't too crazy about Darvon. I hope this makes you feel

better Carol. You did nothing to speed Millie along. Besides, not every LO

reacts the same way to meds. Some can take one kind and this same drug could

send someone else's LO over the edge.

Do you remember a few months ago I was so upset about my dad dying and I wrote

to the group that I should have done more to help him? These are just a few

snippets of what you wrote me:

You did nothing on purpose to harm your dad!

He knows you were doing your best at the time, and you know you

weren't doing anything you thought would hurt him, if he could see

you so sick beating yourself up, what would he say to you?

Well Carol, let me say to you that you did the best you knew how in taking care

of Millie. Did you have moments where you wanted to be elsewhere? Sure, who

among us hasn't...if we are being honest. You did very good by Millie and she

was extremely lucky to have you in her life. Your husband and his brothers were

also extremely lucky to have you as well as you shouldered the lion share of

this journey. I do wish they would get their acts together and come and support

you right now. It sounds to me like you could use a friend and a good

comforting hug. Sending you one right now.

Courage

I told Jim's brother about the Ultram, and he wasn't

at all upset.

It did keep her out of pain, and that was our biggest issue.

The boys know that Millie will die within a week, and they are okay

with all that I have done on their mother's behalf.

She is getting ativan, which I was able to avoid up to this point,

and yet it seems to slow the ride to a comfortable speed.

I am probably having the biggest problem because I was so proactive.

The boys are relieved to see an end in sight, and I can't say I blame

them.

It has been a long time since their mom has had any real quality of

life.

I have been asking God to guide my life, and I can't beat myself up

about Ultram, as it did an important job, and I have to believe God

was guiding me, albeit, not a direction I would have taken knowing

what I know now, but it is okay, she is almost off the ride.

The urine has a good deal of blood in it, and she hates the catheter,

but with the morphine and ativan, she couldn't be trusted walking to

her bathroom.

The boys have decided on graveside only, and a closed casket.

My son's will probably do the service, like they did for my dad three

years ago.

Last night I spent the night with Millie, and will do the same

tonight.

Daytime is pretty pleasant around here, but if she should stir, I

know she'd like a family face.

Last night when I leaned close to hear what she was saying to me, she

raised up and kissed me on the cheek! How could I not stay?

What else would I be doing, anyway?

So, everybody is fine with the Ultram, and even if it turned out to

be a bad idea, it brought things to a close more quickly. God would

have intervened and hit me with a brick if He wasn't ready to let her

slip out of this life.

Millie looks like an end of life shell! I know it will be very hard

for my husband when he sees her tomorrow.

He is having a really tough time coming to Hospice.

He had a rough time with his Dad, and didn't want to be in the room

as he passed.

I know I fought a good fight with the Lewy Bodies, and I have to

remember, I gave her months in her home she wouldn't have had

otherwise.

I have called her favorite niece so she can come visit her while she

is still alive, if she wishes.

I think the family would like a small funeral, and is not encouraging

lots of relatives to spend hours on the road to come for a 15 minute

service.

I seems a shame to embalm just to have a closed casket.

All of her siblings are gone, and so it is a much more private event.

I am just thinking on paper, to see what is in my head.

Ultram may have been the ultimate blessing for Millie.

I know I will post more later tonight.

I am doing fine, and Millie seeems very comfortable.

Carol

[Guest guest]

Carol

you have done so much to help Millie along;this journey, keeping her safe and

comfortable and not only that, she was in a place she felt happy and

comfortable, you did that for alot longer than most people would have, you have

been her advocate when noone else wanted the job, you learned about the disease

and read some horror stories here that stephen king would like to use in his

novels, but you stuck with her, you stuck with it, you didnt complain like many

people would have, you asked questions when you needed to learn, you read

answers that were scary, but you never once no matter how tired, grumpy, mad,

exhausted did not tend to her needs, like caring for a baby her needs overrode

any of your needs and desires. you have been an angel for millie and her kiss

shows that she knows it, she knows that she had the uglies that she couldnt

help, but that magical kiss made all of that just vanish away. it seems she has

made her decision and she is ready to go 'home' and

she wanted you to know she loves you.

as for the funeral, i hd an open casket here in pensacola for daddy so what

few friends he had here could come and they did, but it was my friends who were

there for me and daddy. and then he was flown to ny staten island were we

against my wishes had an open casket for family and friends in ny. i didnt want

open casket becuase daddy lost over 80lbs the last 2 months of his life, that

eventhough everybody said he looked so good, didnt seem until he was done up. he

was wearing his favorite suit eventhough i told him a long time ago that it was

moth eaten, so before i took it to the funeral home donnie and i took a dark

blue sharpy and covered the white spots that the moths chewed threws. we

stopped counting at 155 pinholes on his jacket. but he was in what he wanted.

my only regret is i wished he was buried down here with me, as i canot get up

there to tend to his grave and to talk to him. but he is buried with him mom

and dad and his favorite aunt.

we are all here with you as her journey ends, you will feel so empty and so

full of time, you wont know what to do to yourself, yet you wont feel like doing

much either, try to keep as active as you can, reading sewing, doing odss and

ends you haven't done in forever. but know we are here with you, and sending you

our strength and love to help you. hug sharon

adhd5464 wrote:

It did keep her out of pain, and that was our biggest issue.

The boys know that Millie will die within a week, and they are okay

with all that I have done on their mother's behalf.

She is getting ativan, which I was able to avoid up to this point,

and yet it seems to slow the ride to a comfortable speed.

I am probably having the biggest problem because I was so proactive.

The boys are relieved to see an end in sight, and I can't say I blame

them.

It has been a long time since their mom has had any real quality of

life.

I have been asking God to guide my life, and I can't beat myself up

about Ultram, as it did an important job, and I have to believe God

was guiding me, albeit, not a direction I would have taken knowing

what I know now, but it is okay, she is almost off the ride.

The urine has a good deal of blood in it, and she hates the catheter,

but with the morphine and ativan, she couldn't be trusted walking to

her bathroom.

The boys have decided on graveside only, and a closed casket.

My son's will probably do the service, like they did for my dad three

years ago.

Last night I spent the night with Millie, and will do the same

tonight.

Daytime is pretty pleasant around here, but if she should stir, I

know she'd like a family face.

Last night when I leaned close to hear what she was saying to me, she

raised up and kissed me on the cheek! How could I not stay?

What else would I be doing, anyway?

So, everybody is fine with the Ultram, and even if it turned out to

be a bad idea, it brought things to a close more quickly. God would

have intervened and hit me with a brick if He wasn't ready to let her

slip out of this life.

Millie looks like an end of life shell! I know it will be very hard

for my husband when he sees her tomorrow.

He is having a really tough time coming to Hospice.

He had a rough time with his Dad, and didn't want to be in the room

as he passed.

I know I fought a good fight with the Lewy Bodies, and I have to

remember, I gave her months in her home she wouldn't have had

otherwise.

I have called her favorite niece so she can come visit her while she

is still alive, if she wishes.

I think the family would like a small funeral, and is not encouraging

lots of relatives to spend hours on the road to come for a 15 minute

service.

I seems a shame to embalm just to have a closed casket.

All of her siblings are gone, and so it is a much more private event.

I am just thinking on paper, to see what is in my head.

Ultram may have been the ultimate blessing for Millie.

I know I will post more later tonight.

I am doing fine, and Millie seeems very comfortable.

Carol

---------------------------------

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Carol,

I haven't been online for a while, so didn't know

Millie was nearing the end. My heart goes out to you

and your husband! I know she wasn't much of a mom to

your husband, but I also know he loved her the only

way he could, and will grieve with her passing. I pray

she goes quickly with no pain.

lisa

Engles

SEIU-UHW Shop Steward

________________________________________________________________________________\

____

Looking for last minute shopping deals?

Find them fast with Yahoo! Search.

http://tools.search.yahoo.com/newsearch/category.php?category=shopping

[Guest guest]

All I can say is; Wow.

The ride is different for everyone. When it's time, it's time. Millie was very

fortunate to have

you caring for her. I am a firm believer in the Lord guides us in caring for our

LOs. You did

the very best you could Carol and never second guess yourself with the " if "

word.

Give yourself a pat on the back for all the challenges that you faced and

overcame and the experiences

that you had everyday and conquered. (Poop comes to mind) It wasn't an easy

task, but you stood your ground and

were there for Millie in the thick of it all and you are still there for her.

I know it is a sweet and sour time. You put a lot of time in with Millie and you

bonded. It must be

difficult and at the same time joyous to know that Millie will soon be free of

the chains of LBD.

Stay strong.......................Jan

I told Jim's brother about the Ultram, and he wasn't at

all upset.

It did keep her out of pain, and that was our biggest issue.

The boys know that Millie will die within a week, and they are okay

with all that I have done on their mother's behalf.

She is getting ativan, which I was able to avoid up to this point,

and yet it seems to slow the ride to a comfortable speed.

I am probably having the biggest problem because I was so proactive.

The boys are relieved to see an end in sight, and I can't say I blame

them.

It has been a long time since their mom has had any real quality of

life.

I have been asking God to guide my life, and I can't beat myself up

about Ultram, as it did an important job, and I have to believe God

was guiding me, albeit, not a direction I would have taken knowing

what I know now, but it is okay, she is almost off the ride.

The urine has a good deal of blood in it, and she hates the catheter,

but with the morphine and ativan, she couldn't be trusted walking to

her bathroom.

The boys have decided on graveside only, and a closed casket.

My son's will probably do the service, like they did for my dad three

years ago.

Last night I spent the night with Millie, and will do the same

tonight.

Daytime is pretty pleasant around here, but if she should stir, I

know she'd like a family face.

Last night when I leaned close to hear what she was saying to me, she

raised up and kissed me on the cheek! How could I not stay?

What else would I be doing, anyway?

So, everybody is fine with the Ultram, and even if it turned out to

be a bad idea, it brought things to a close more quickly. God would

have intervened and hit me with a brick if He wasn't ready to let her

slip out of this life.

Millie looks like an end of life shell! I know it will be very hard

for my husband when he sees her tomorrow.

He is having a really tough time coming to Hospice.

He had a rough time with his Dad, and didn't want to be in the room

as he passed.

I know I fought a good fight with the Lewy Bodies, and I have to

remember, I gave her months in her home she wouldn't have had

otherwise.

I have called her favorite niece so she can come visit her while she

is still alive, if she wishes.

I think the family would like a small funeral, and is not encouraging

lots of relatives to spend hours on the road to come for a 15 minute

service.

I seems a shame to embalm just to have a closed casket.

All of her siblings are gone, and so it is a much more private event.

I am just thinking on paper, to see what is in my head.

Ultram may have been the ultimate blessing for Millie.

I know I will post more later tonight.

I am doing fine, and Millie seeems very comfortable.

Carol

Welcome to LBDcaregivers.

[Guest guest]

By Friday of last week the sitter had noted some drastic changes, and

I was seeing the same things.

On Monday we decided we needed to eleimate a Uti or a stroke.

We went to the emergency room and after 10 hours they admitted her,

without the evidence of a stroke or UTI.

the hospital definitely didn't think she was in any condition to

return to her house, and we were ready for 5 days of respite from

Hospice. We thought once they evaluated her then they would make

some decisions about how close she might be to needing hospice

permanently.

She left the hospital on thursday afternoon, and came directly to

Hospice. I met her after work and she wanted to know when she could

go home. She seemed more lucid than when i had seen her at the

hospital.

friday afternoon when I got to hospice, she looked like an old lady

who was going to die.

As sad as it is to see her looking so ready to leave this world, it

is even sadder when she wakes up and wants to climb out of the bed

to get to the bathroom.

I guess it feels a bit like taking the dog to the vet to be put down,

but this is taking much longer. In my heart I know it is the best

for Millie, but a sudden stroke might have been easier.

She apppears to be resting comfortably, and that is nothing to sneeze

at.

I have discussed her brain being donated to Lewy Body research with

the boys, but that is their call. I think an autopsy is the right

thing, but i am an in-law.

we have discussed funeral stuff, and tomorrow we may get the donation

deal nailed down.

The hospice folks should be able to help me gather some more info for

the boys.

Jim's brother's wife wants to spend the night with Millie tomorrow

night and called to ask permission. How could I not say it was okay?

if she happens to pass while we are both here, that is okay!

I was alone with mmy dad when he passed and it was sad watching the

van take his body away by myself.

The other sister-in-law, who is a home health aide by profession, has

not seen Millie since she was diagnosed over a year ago.

Life is strange!

I doubt either of my boys will come by either.

We just have to do what we do, and live with what that is.

thanks for tuning in again.

i will keep you posted.

Carol

>

> Carol,

> I haven't been online for a while, so didn't know

> Millie was nearing the end. My heart goes out to you

> and your husband! I know she wasn't much of a mom to

> your husband, but I also know he loved her the only

> way he could, and will grieve with her passing. I pray

> she goes quickly with no pain.

> lisa

>

>

> Engles

> SEIU-UHW Shop Steward

>

>

>

>

>

______________________________________________________________________

______________

> Looking for last minute shopping deals?

> Find them fast with Yahoo! Search.

http://tools.search.yahoo.com/newsearch/category.php?category=shopping

>

[Guest guest]

Carol, I haven't kept up with the mail, and your letter about Millie

gave me a start! I was shocked to read she may die within a week.

Dear, you are a wonderful person, and you did a fine job with Millie.

You have made good points with your husband, God, and maybe even the

rest of Millie's family. Few can do what you did. I really

appreciated your open frank talk about how hard things were.

Don't ever have thoughts that you didn't do everything right.

You have done a supperb job. This Mama has said so, and it is SO.

Love you dear,

Imogene

>

> It did keep her out of pain, and that was our biggest issue.

>

> The boys know that Millie will die within a week, and they are okay

> with all that I have done on their mother's behalf.

>

> She is getting ativan, which I was able to avoid up to this point,

> and yet it seems to slow the ride to a comfortable speed.

>

> I am probably having the biggest problem because I was so proactive.

>

> The boys are relieved to see an end in sight, and I can't say I

blame

> them.

>

> It has been a long time since their mom has had any real quality of

> life.

>

> I have been asking God to guide my life, and I can't beat myself up

> about Ultram, as it did an important job, and I have to believe God

> was guiding me, albeit, not a direction I would have taken knowing

> what I know now, but it is okay, she is almost off the ride.

>

> The urine has a good deal of blood in it, and she hates the

catheter,

> but with the morphine and ativan, she couldn't be trusted walking

to

> her bathroom.

>

> The boys have decided on graveside only, and a closed casket.

>

> My son's will probably do the service, like they did for my dad

three

> years ago.

>

> Last night I spent the night with Millie, and will do the same

> tonight.

>

> Daytime is pretty pleasant around here, but if she should stir, I

> know she'd like a family face.

>

> Last night when I leaned close to hear what she was saying to me,

she

> raised up and kissed me on the cheek! How could I not stay?

>

> What else would I be doing, anyway?

>

> So, everybody is fine with the Ultram, and even if it turned out to

> be a bad idea, it brought things to a close more quickly. God

would

> have intervened and hit me with a brick if He wasn't ready to let

her

> slip out of this life.

>

> Millie looks like an end of life shell! I know it will be very

hard

> for my husband when he sees her tomorrow.

>

> He is having a really tough time coming to Hospice.

>

> He had a rough time with his Dad, and didn't want to be in the room

> as he passed.

>

> I know I fought a good fight with the Lewy Bodies, and I have to

> remember, I gave her months in her home she wouldn't have had

> otherwise.

>

> I have called her favorite niece so she can come visit her while

she

> is still alive, if she wishes.

>

> I think the family would like a small funeral, and is not

encouraging

> lots of relatives to spend hours on the road to come for a 15

minute

> service.

>

> I seems a shame to embalm just to have a closed casket.

>

> All of her siblings are gone, and so it is a much more private

event.

>

> I am just thinking on paper, to see what is in my head.

>

> Ultram may have been the ultimate blessing for Millie.

>

> I know I will post more later tonight.

>

> I am doing fine, and Millie seeems very comfortable.

>

> Carol

>

[Guest guest]

<snip> Last night when I leaned close to hear what she was saying to

me, she raised up and kissed me on the cheek! How could I not stay?

<snip>

This moved me... Millie appreciates all that you've done for her. Hold

this close to your heart forever! A precious gift that should never be

forgotten. Millie was blessed to have a caregiver such as you, Carol!

You've been wonderful for her and have been wonderful for all of us

here on the board. Thank you!