Re: What are the normal breath rates in the eldery?

[Guest guest]

>

> It was very hard for me to let them come, I did it only for my aunt. As I

know she would want to see & hear them, even if she can't speak. I just think of

how many years she has been sick & they never bothered to come or even call for

that matter. I had to put that all aside last night. I would do anything for

my aunt!

*** It's always better to be the bigger person, Beth. And, it's best to live a

life with a goal of as few regrets as possible. You've covered both with your

decision. Over time, maybe the wounds can heal so that everyone can share

happier times in the future. ***

>

> I was exhausted & am still tired this morning, she slept pretty well, but I

was still up a lot checking on her. I gave her two of the antibiotics now I

hope I start seeing some positive signs today. She didn't eat or drink a thing

this morning. She acted like she wanted the juice with the straw, but just

couldn't take it up to her mouth. She sucked on a popsicle, and I just gave her

some juice & she was so thirsty the way she was going after the juice. It

really upsets me when I know she is so thirsty. I just hope she hasn't forgot

how to drink from a straw, I just can't believe it would happen that quickly she

was drinking a lot just a few days ago, that is why I think it's a UTI.

***With the first UTI that my mother got, shortly after her diagnosis and only

months after moving out of her apartment, she completely forgot how to walk.

She was so confused, she couldn't function at all. This happened with no

warning, too. It was one of the most frightening things I've ever experienced

with her. She bounced back after the antibiotics but, truthfully, she was never

the same afterward. It's amazing how much a UTI can affect our loved ones

struggling with Lewy Body (or any dementia).

I hope you can take the opportunity while your aunt's sisters sit with her to

get more rest. We have a tendency to move through this journey with our loved

ones, taking one day at a time and not realizing the toll it has taken on

ourselves. It's like the old story of the frog...(I'm terrible at old stories

so bear with me)...you put a frog in a pot of water on the stove and slowly turn

up the heat. The frog never realizes just how much trouble he's in until it's

too late. (My sons used to call my stores fractured fairy tales <smile>) We

don't realize the depth of our fatigue until we get a chance to take a deep

breath. Let your body and your mind rest for a while even if it's easier said

than done.

Best wishes,

Lynn

[Guest guest]

> Not having children of my own, I do wonder what will happen when I am in my

last years.

***Kate, having children doesn't guarantee anyone support in their last years.

I've visited several nursing homes on a regular basis to know this to be true.

All too many times, people are " deposited " while families move on with their

lives. It's sad. You are lucky to have nieces who care enough to make that

promise. ***

> Lynn, thank you for being her for Beth.

***Not a problem. We're all in this together and never want anyone to feel like

they're alone. We all do what we can, when we can. :-)

Best wishes,

Lynn in FL

[Guest guest]

> Not having children of my own, I do wonder what will happen when I am in my

last years.

***Kate, having children doesn't guarantee anyone support in their last years.

I've visited several nursing homes on a regular basis to know this to be true.

All too many times, people are " deposited " while families move on with their

lives. It's sad. You are lucky to have nieces who care enough to make that

promise. ***

> Lynn, thank you for being her for Beth.

***Not a problem. We're all in this together and never want anyone to feel like

they're alone. We all do what we can, when we can. :-)

Best wishes,

Lynn in FL

[Guest guest]

Hi Lynn I haven't been on much today, the antibiotic has did nothing so far.

She won't eat or drink a thing, only what I give her in the syringe. I thought

sure today she would eat & drink at some point. Her heart rate was in the 30's

early morning & has stayed mostly in the upper 40's all day. It was in the 50's

a few times. Her blood pressure has been good.

One of my aunt's came back out and spent the day, and I thought hearing her

voice she might eat like she had the night before the icecream. My aunt has had

her eyes open on & off all day, so she is aware of what is going on.

I just feel like running away this is so very hard. I just pray this medicine

will start working soon. She still goes to the bathroom, so she must be getting

some of the fluid I am giving her.

My spirits are low today, I had such hope in those shots, they were going to

give her. I know I have said this before, but I hate this disease with a

passion!!!!

> >

> > It was very hard for me to let them come, I did it only for my aunt. As I

know she would want to see & hear them, even if she can't speak. I just think of

how many years she has been sick & they never bothered to come or even call for

that matter. I had to put that all aside last night. I would do anything for

my aunt!

>

> *** It's always better to be the bigger person, Beth. And, it's best to live

a life with a goal of as few regrets as possible. You've covered both with your

decision. Over time, maybe the wounds can heal so that everyone can share

happier times in the future. ***

> >

> > I was exhausted & am still tired this morning, she slept pretty well, but I

was still up a lot checking on her. I gave her two of the antibiotics now I

hope I start seeing some positive signs today. She didn't eat or drink a thing

this morning. She acted like she wanted the juice with the straw, but just

couldn't take it up to her mouth. She sucked on a popsicle, and I just gave her

some juice & she was so thirsty the way she was going after the juice. It

really upsets me when I know she is so thirsty. I just hope she hasn't forgot

how to drink from a straw, I just can't believe it would happen that quickly she

was drinking a lot just a few days ago, that is why I think it's a UTI.

>

> ***With the first UTI that my mother got, shortly after her diagnosis and only

months after moving out of her apartment, she completely forgot how to walk.

She was so confused, she couldn't function at all. This happened with no

warning, too. It was one of the most frightening things I've ever experienced

with her. She bounced back after the antibiotics but, truthfully, she was never

the same afterward. It's amazing how much a UTI can affect our loved ones

struggling with Lewy Body (or any dementia).

>

> I hope you can take the opportunity while your aunt's sisters sit with her to

get more rest. We have a tendency to move through this journey with our loved

ones, taking one day at a time and not realizing the toll it has taken on

ourselves. It's like the old story of the frog...(I'm terrible at old stories

so bear with me)...you put a frog in a pot of water on the stove and slowly turn

up the heat. The frog never realizes just how much trouble he's in until it's

too late. (My sons used to call my stores fractured fairy tales <smile>) We

don't realize the depth of our fatigue until we get a chance to take a deep

breath. Let your body and your mind rest for a while even if it's easier said

than done.

>

> Best wishes,

> Lynn

>

[Guest guest]

Hi Lynn I haven't been on much today, the antibiotic has did nothing so far.

She won't eat or drink a thing, only what I give her in the syringe. I thought

sure today she would eat & drink at some point. Her heart rate was in the 30's

early morning & has stayed mostly in the upper 40's all day. It was in the 50's

a few times. Her blood pressure has been good.

One of my aunt's came back out and spent the day, and I thought hearing her

voice she might eat like she had the night before the icecream. My aunt has had

her eyes open on & off all day, so she is aware of what is going on.

I just feel like running away this is so very hard. I just pray this medicine

will start working soon. She still goes to the bathroom, so she must be getting

some of the fluid I am giving her.

My spirits are low today, I had such hope in those shots, they were going to

give her. I know I have said this before, but I hate this disease with a

passion!!!!

> >

> > It was very hard for me to let them come, I did it only for my aunt. As I

know she would want to see & hear them, even if she can't speak. I just think of

how many years she has been sick & they never bothered to come or even call for

that matter. I had to put that all aside last night. I would do anything for

my aunt!

>

> *** It's always better to be the bigger person, Beth. And, it's best to live

a life with a goal of as few regrets as possible. You've covered both with your

decision. Over time, maybe the wounds can heal so that everyone can share

happier times in the future. ***

> >

> > I was exhausted & am still tired this morning, she slept pretty well, but I

was still up a lot checking on her. I gave her two of the antibiotics now I

hope I start seeing some positive signs today. She didn't eat or drink a thing

this morning. She acted like she wanted the juice with the straw, but just

couldn't take it up to her mouth. She sucked on a popsicle, and I just gave her

some juice & she was so thirsty the way she was going after the juice. It

really upsets me when I know she is so thirsty. I just hope she hasn't forgot

how to drink from a straw, I just can't believe it would happen that quickly she

was drinking a lot just a few days ago, that is why I think it's a UTI.

>

> ***With the first UTI that my mother got, shortly after her diagnosis and only

months after moving out of her apartment, she completely forgot how to walk.

She was so confused, she couldn't function at all. This happened with no

warning, too. It was one of the most frightening things I've ever experienced

with her. She bounced back after the antibiotics but, truthfully, she was never

the same afterward. It's amazing how much a UTI can affect our loved ones

struggling with Lewy Body (or any dementia).

>

> I hope you can take the opportunity while your aunt's sisters sit with her to

get more rest. We have a tendency to move through this journey with our loved

ones, taking one day at a time and not realizing the toll it has taken on

ourselves. It's like the old story of the frog...(I'm terrible at old stories

so bear with me)...you put a frog in a pot of water on the stove and slowly turn

up the heat. The frog never realizes just how much trouble he's in until it's

too late. (My sons used to call my stores fractured fairy tales <smile>) We

don't realize the depth of our fatigue until we get a chance to take a deep

breath. Let your body and your mind rest for a while even if it's easier said

than done.

>

> Best wishes,

> Lynn

>

[Guest guest]

Yes Lynn as been a God send I don't know how I would have made it through

yesterday. I have been an emotional wreck. This is the hardest thing I have

ever done. Sometimes I feel like running out the door screaming my head off

hands in the air. Then I would be carted away!

I'm glad you have your niece Beth, that will take care of you if need be! If

only all families had a Beth!

Thank you for your thoughtful words, they mean a lot to me!

God Bless,

Beth

> > > >

> > > > That isn't the right antibiotic, I don't have it yet to tell you the

> > correct name, someone went to pick it up for me. I really pray it does

> > something. It's so hard to bear. I gave in & let her sisters come, I know

> > that she would want me too. And I wouldn't want to take that away from her,

> > even though I am upset with them.

> > >

> >

> >

> >

>

>

>

> --

> Kate Knapp, OIT

> University of Minnesota

>

>

> You were born with certain gifts and talents.

> In kindergarten you were taught to share.

> The world needs all of the gifts it can get.

> Don't be shy.

>

>

>

[Guest guest]

Yes Lynn as been a God send I don't know how I would have made it through

yesterday. I have been an emotional wreck. This is the hardest thing I have

ever done. Sometimes I feel like running out the door screaming my head off

hands in the air. Then I would be carted away!

I'm glad you have your niece Beth, that will take care of you if need be! If

only all families had a Beth!

Thank you for your thoughtful words, they mean a lot to me!

God Bless,

Beth

> > > >

> > > > That isn't the right antibiotic, I don't have it yet to tell you the

> > correct name, someone went to pick it up for me. I really pray it does

> > something. It's so hard to bear. I gave in & let her sisters come, I know

> > that she would want me too. And I wouldn't want to take that away from her,

> > even though I am upset with them.

> > >

> >

> >

> >

>

>

>

> --

> Kate Knapp, OIT

> University of Minnesota

>

>

> You were born with certain gifts and talents.

> In kindergarten you were taught to share.

> The world needs all of the gifts it can get.

> Don't be shy.

>

>

>

[Guest guest]

Beth: Sending up a prayer for you!! Please get some rest whenever

possible!! I would have hoped that Hospice would send in some respite care

for you! May God touch you and your aunt!

Vivian

> **

>

>

> Yes Lynn as been a God send I don't know how I would have made it through

> yesterday. I have been an emotional wreck. This is the hardest thing I have

> ever done. Sometimes I feel like running out the door screaming my head off

> hands in the air. Then I would be carted away!

>

> I'm glad you have your niece Beth, that will take care of you if need be!

> If only all families had a Beth!

>

> Thank you for your thoughtful words, they mean a lot to me!

>

> God Bless,

> Beth

>

>

> > > > >

> > > > > That isn't the right antibiotic, I don't have it yet to tell you

> the

> > > correct name, someone went to pick it up for me. I really pray it does

> > > something. It's so hard to bear. I gave in & let her sisters come, I

> know

> > > that she would want me too. And I wouldn't want to take that away from

> her,

> > > even though I am upset with them.

> > > >

> > >

> > >

> > >

> >

> >

> >

> > --

> > Kate Knapp, OIT

> > University of Minnesota

> >

> >

> > You were born with certain gifts and talents.

> > In kindergarten you were taught to share.

> > The world needs all of the gifts it can get.

> > Don't be shy.

> >

> >

> >

[Guest guest]

Beth: Sending up a prayer for you!! Please get some rest whenever

possible!! I would have hoped that Hospice would send in some respite care

for you! May God touch you and your aunt!

Vivian

> **

>

>

> Yes Lynn as been a God send I don't know how I would have made it through

> yesterday. I have been an emotional wreck. This is the hardest thing I have

> ever done. Sometimes I feel like running out the door screaming my head off

> hands in the air. Then I would be carted away!

>

> I'm glad you have your niece Beth, that will take care of you if need be!

> If only all families had a Beth!

>

> Thank you for your thoughtful words, they mean a lot to me!

>

> God Bless,

> Beth

>

>

> > > > >

> > > > > That isn't the right antibiotic, I don't have it yet to tell you

> the

> > > correct name, someone went to pick it up for me. I really pray it does

> > > something. It's so hard to bear. I gave in & let her sisters come, I

> know

> > > that she would want me too. And I wouldn't want to take that away from

> her,

> > > even though I am upset with them.

> > > >

> > >

> > >

> > >

> >

> >

> >

> > --

> > Kate Knapp, OIT

> > University of Minnesota

> >

> >

> > You were born with certain gifts and talents.

> > In kindergarten you were taught to share.

> > The world needs all of the gifts it can get.

> > Don't be shy.

> >

> >

> >

[Guest guest]

Thank you Vivian, rest is hard to do, I can't settle my brain down or my body.

I am up checking on her, and it is just very restless I'm half asleep & half

watching her.

I wish I had family like all of you, that was here & I could cry too.

God Bless You,

Beth

> > > > > >

> > > > > > That isn't the right antibiotic, I don't have it yet to tell you

> > the

> > > > correct name, someone went to pick it up for me. I really pray it does

> > > > something. It's so hard to bear. I gave in & let her sisters come, I

> > know

> > > > that she would want me too. And I wouldn't want to take that away from

> > her,

> > > > even though I am upset with them.

> > > > >

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > > --

> > > Kate Knapp, OIT

> > > University of Minnesota

> > >

> > >

> > > You were born with certain gifts and talents.

> > > In kindergarten you were taught to share.

> > > The world needs all of the gifts it can get.

> > > Don't be shy.

> > >

> > >

> > >

[Guest guest]

Thank you Vivian, rest is hard to do, I can't settle my brain down or my body.

I am up checking on her, and it is just very restless I'm half asleep & half

watching her.

I wish I had family like all of you, that was here & I could cry too.

God Bless You,

Beth

> > > > > >

> > > > > > That isn't the right antibiotic, I don't have it yet to tell you

> > the

> > > > correct name, someone went to pick it up for me. I really pray it does

> > > > something. It's so hard to bear. I gave in & let her sisters come, I

> > know

> > > > that she would want me too. And I wouldn't want to take that away from

> > her,

> > > > even though I am upset with them.

> > > > >

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > > --

> > > Kate Knapp, OIT

> > > University of Minnesota

> > >

> > >

> > > You were born with certain gifts and talents.

> > > In kindergarten you were taught to share.

> > > The world needs all of the gifts it can get.

> > > Don't be shy.

> > >

> > >

> > >

[Guest guest]

>

>

> Hi Lynn I haven't been on much today, the antibiotic has did nothing so far.

She won't eat or drink a thing, only what I give her in the syringe. I thought

sure today she would eat & drink at some point. Her heart rate was in the 30's

early morning & has stayed mostly in the upper 40's all day. It was in the 50's

a few times. Her blood pressure has been good.

*** Hi, Beth. I don't know how quickly the antibiotic will work, in all

honesty. With multiple doses given every day, it may be that smaller doses will

take longer.

It may also be that, as I wrote yesterday, her body is transitioning. I

remember the feeling when it became apparent that was what was happening with my

mother. There was incredible sadness and a feeling of total hopelessness.

Sadness, in spite of the fact that Mom was so very thin and so very helpless,

something she would have hated. As much as I didn't want to lose her, the truth

was that she was going to be released from the terrible trap of Lewy Body. I

imagined her dancing with my father, hugging her mother and father and adoring

her big brother again and it made it easier...not easy, but easier.

Hopelessness because for six years, I had worked to make her life as good as I

could and here I was, not able to do more. It was out of my hands at that

point. The focus then became comfort. Thankfully, I had a wonderful Hospice

team that was always present during those last days...what a wonderful source of

strength and confidence. It is my hope that when your aunt is at that point,

Hospice will be there beside you, too. ***

>

> One of my aunt's came back out and spent the day, and I thought hearing her

voice she might eat like she had the night before the icecream. My aunt has had

her eyes open on & off all day, so she is aware of what is going on.

*** The good part about that is that she recognizes she is surrounded by loving

and caring hearts. She needs to know that everyone is okay in order for her to

be okay. I'm so glad everyone is there for her now.***

>

> I just feel like running away this is so very hard. I just pray this medicine

will start working soon. She still goes to the bathroom, so she must be getting

some of the fluid I am giving her.

***Oh, how I remember that! I, too, wished I could walk away from the pain of

Mom's transition. But, that would mean walking away from my mother when she

most needed me. I couldn't do that and kept remembering that God doesn't give

us more than we can handle. Every moment provided an ability to grow and to

give my mother what she had so lovingly given me when I was a helpless child in

her arms. It *is* the most difficult part of the journey that is Lewy Body. ***

>

> My spirits are low today, I had such hope in those shots, they were going to

give her. I know I have said this before, but I hate this disease with a

passion!!!!

***I understand that, Beth. I'm glad that you had hope...you could have

hope...that is so important in life. Without hope, we have nothing. Hope for

life can evolve, though, to hope for peace and comfort and still be a positive

force.

My father died in 1974 of emphysema, still a young man. My mother was young,

too, and able to start a new life. Watching his decline over a 9-year-period

(my parents lived with us at the time) and seeing how much quality of life he

slowly, but surely, lost, I eventually could get to the point of realizing it

wasn't his passing that I regretted but, rather, the disease. It came as no

surprise to me that the same realization came with my mother's passing; it just

came a lot sooner. My faith allows me to truly believe that my parents were

reunited and I knew that was something my mother had looked forward to for many

years. There was good in her passing for that reason. But, there was nothing

good about the disease that left her so helpless. Try to focus on what your

aunt would want and allow that to guide you as you remain by her side. Allow

your faith to give you strength and believe that God has your aunt in his hands.

If you are calm, your aunt will also be calmed by your presence and faith.

Please keep in touch with us. We are here with you. Kate, Helene and others

who are reading and sending thoughts and prayers your way.

Best wishes,

Lynn in Florida

[Guest guest]

>

>

> Hi Lynn I haven't been on much today, the antibiotic has did nothing so far.

She won't eat or drink a thing, only what I give her in the syringe. I thought

sure today she would eat & drink at some point. Her heart rate was in the 30's

early morning & has stayed mostly in the upper 40's all day. It was in the 50's

a few times. Her blood pressure has been good.

*** Hi, Beth. I don't know how quickly the antibiotic will work, in all

honesty. With multiple doses given every day, it may be that smaller doses will

take longer.

It may also be that, as I wrote yesterday, her body is transitioning. I

remember the feeling when it became apparent that was what was happening with my

mother. There was incredible sadness and a feeling of total hopelessness.

Sadness, in spite of the fact that Mom was so very thin and so very helpless,

something she would have hated. As much as I didn't want to lose her, the truth

was that she was going to be released from the terrible trap of Lewy Body. I

imagined her dancing with my father, hugging her mother and father and adoring

her big brother again and it made it easier...not easy, but easier.

Hopelessness because for six years, I had worked to make her life as good as I

could and here I was, not able to do more. It was out of my hands at that

point. The focus then became comfort. Thankfully, I had a wonderful Hospice

team that was always present during those last days...what a wonderful source of

strength and confidence. It is my hope that when your aunt is at that point,

Hospice will be there beside you, too. ***

>

> One of my aunt's came back out and spent the day, and I thought hearing her

voice she might eat like she had the night before the icecream. My aunt has had

her eyes open on & off all day, so she is aware of what is going on.

*** The good part about that is that she recognizes she is surrounded by loving

and caring hearts. She needs to know that everyone is okay in order for her to

be okay. I'm so glad everyone is there for her now.***

>

> I just feel like running away this is so very hard. I just pray this medicine

will start working soon. She still goes to the bathroom, so she must be getting

some of the fluid I am giving her.

***Oh, how I remember that! I, too, wished I could walk away from the pain of

Mom's transition. But, that would mean walking away from my mother when she

most needed me. I couldn't do that and kept remembering that God doesn't give

us more than we can handle. Every moment provided an ability to grow and to

give my mother what she had so lovingly given me when I was a helpless child in

her arms. It *is* the most difficult part of the journey that is Lewy Body. ***

>

> My spirits are low today, I had such hope in those shots, they were going to

give her. I know I have said this before, but I hate this disease with a

passion!!!!

***I understand that, Beth. I'm glad that you had hope...you could have

hope...that is so important in life. Without hope, we have nothing. Hope for

life can evolve, though, to hope for peace and comfort and still be a positive

force.

My father died in 1974 of emphysema, still a young man. My mother was young,

too, and able to start a new life. Watching his decline over a 9-year-period

(my parents lived with us at the time) and seeing how much quality of life he

slowly, but surely, lost, I eventually could get to the point of realizing it

wasn't his passing that I regretted but, rather, the disease. It came as no

surprise to me that the same realization came with my mother's passing; it just

came a lot sooner. My faith allows me to truly believe that my parents were

reunited and I knew that was something my mother had looked forward to for many

years. There was good in her passing for that reason. But, there was nothing

good about the disease that left her so helpless. Try to focus on what your

aunt would want and allow that to guide you as you remain by her side. Allow

your faith to give you strength and believe that God has your aunt in his hands.

If you are calm, your aunt will also be calmed by your presence and faith.

Please keep in touch with us. We are here with you. Kate, Helene and others

who are reading and sending thoughts and prayers your way.

Best wishes,

Lynn in Florida

[Guest guest]

Dear Lynn,

Thanks for the thoughts and prayers- they do make such a big difference...

Beth, it is indeed so hard to have to bear all of this..... I hope your aunt

has a better day today.

Keeping all of you in my prayers, too!

Hugs from NY,

Helene

> >

> >

> > Hi Lynn I haven't been on much today, the antibiotic has did nothing so far.

She won't eat or drink a thing, only what I give her in the syringe. I thought

sure today she would eat & drink at some point. Her heart rate was in the 30's

early morning & has stayed mostly in the upper 40's all day. It was in the 50's

a few times. Her blood pressure has been good.

>

> *** Hi, Beth. I don't know how quickly the antibiotic will work, in all

honesty. With multiple doses given every day, it may be that smaller doses will

take longer.

>

> It may also be that, as I wrote yesterday, her body is transitioning. I

remember the feeling when it became apparent that was what was happening with my

mother. There was incredible sadness and a feeling of total hopelessness.

Sadness, in spite of the fact that Mom was so very thin and so very helpless,

something she would have hated. As much as I didn't want to lose her, the truth

was that she was going to be released from the terrible trap of Lewy Body. I

imagined her dancing with my father, hugging her mother and father and adoring

her big brother again and it made it easier...not easy, but easier.

Hopelessness because for six years, I had worked to make her life as good as I

could and here I was, not able to do more. It was out of my hands at that

point. The focus then became comfort. Thankfully, I had a wonderful Hospice

team that was always present during those last days...what a wonderful source of

strength and confidence. It is my hope that when your aunt is at that point,

Hospice will be there beside you, too. ***

> >

> > One of my aunt's came back out and spent the day, and I thought hearing her

voice she might eat like she had the night before the icecream. My aunt has had

her eyes open on & off all day, so she is aware of what is going on.

>

> *** The good part about that is that she recognizes she is surrounded by

loving and caring hearts. She needs to know that everyone is okay in order for

her to be okay. I'm so glad everyone is there for her now.***

> >

> > I just feel like running away this is so very hard. I just pray this

medicine will start working soon. She still goes to the bathroom, so she must be

getting some of the fluid I am giving her.

>

> ***Oh, how I remember that! I, too, wished I could walk away from the pain of

Mom's transition. But, that would mean walking away from my mother when she

most needed me. I couldn't do that and kept remembering that God doesn't give

us more than we can handle. Every moment provided an ability to grow and to

give my mother what she had so lovingly given me when I was a helpless child in

her arms. It *is* the most difficult part of the journey that is Lewy Body. ***

> >

> > My spirits are low today, I had such hope in those shots, they were going to

give her. I know I have said this before, but I hate this disease with a

passion!!!!

>

> ***I understand that, Beth. I'm glad that you had hope...you could have

hope...that is so important in life. Without hope, we have nothing. Hope for

life can evolve, though, to hope for peace and comfort and still be a positive

force.

>

> My father died in 1974 of emphysema, still a young man. My mother was young,

too, and able to start a new life. Watching his decline over a 9-year-period

(my parents lived with us at the time) and seeing how much quality of life he

slowly, but surely, lost, I eventually could get to the point of realizing it

wasn't his passing that I regretted but, rather, the disease. It came as no

surprise to me that the same realization came with my mother's passing; it just

came a lot sooner. My faith allows me to truly believe that my parents were

reunited and I knew that was something my mother had looked forward to for many

years. There was good in her passing for that reason. But, there was nothing

good about the disease that left her so helpless. Try to focus on what your

aunt would want and allow that to guide you as you remain by her side. Allow

your faith to give you strength and believe that God has your aunt in his hands.

If you are calm, your aunt will also be calmed by your presence and faith.

>

> Please keep in touch with us. We are here with you. Kate, Helene and others

who are reading and sending thoughts and prayers your way.

>

> Best wishes,

> Lynn in Florida

>

[Guest guest]

Dear Lynn,

Thanks for the thoughts and prayers- they do make such a big difference...

Beth, it is indeed so hard to have to bear all of this..... I hope your aunt

has a better day today.

Keeping all of you in my prayers, too!

Hugs from NY,

Helene

> >

> >

> > Hi Lynn I haven't been on much today, the antibiotic has did nothing so far.

She won't eat or drink a thing, only what I give her in the syringe. I thought

sure today she would eat & drink at some point. Her heart rate was in the 30's

early morning & has stayed mostly in the upper 40's all day. It was in the 50's

a few times. Her blood pressure has been good.

>

> *** Hi, Beth. I don't know how quickly the antibiotic will work, in all

honesty. With multiple doses given every day, it may be that smaller doses will

take longer.

>

> It may also be that, as I wrote yesterday, her body is transitioning. I

remember the feeling when it became apparent that was what was happening with my

mother. There was incredible sadness and a feeling of total hopelessness.

Sadness, in spite of the fact that Mom was so very thin and so very helpless,

something she would have hated. As much as I didn't want to lose her, the truth

was that she was going to be released from the terrible trap of Lewy Body. I

imagined her dancing with my father, hugging her mother and father and adoring

her big brother again and it made it easier...not easy, but easier.

Hopelessness because for six years, I had worked to make her life as good as I

could and here I was, not able to do more. It was out of my hands at that

point. The focus then became comfort. Thankfully, I had a wonderful Hospice

team that was always present during those last days...what a wonderful source of

strength and confidence. It is my hope that when your aunt is at that point,

Hospice will be there beside you, too. ***

> >

> > One of my aunt's came back out and spent the day, and I thought hearing her

voice she might eat like she had the night before the icecream. My aunt has had

her eyes open on & off all day, so she is aware of what is going on.

>

> *** The good part about that is that she recognizes she is surrounded by

loving and caring hearts. She needs to know that everyone is okay in order for

her to be okay. I'm so glad everyone is there for her now.***

> >

> > I just feel like running away this is so very hard. I just pray this

medicine will start working soon. She still goes to the bathroom, so she must be

getting some of the fluid I am giving her.

>

> ***Oh, how I remember that! I, too, wished I could walk away from the pain of

Mom's transition. But, that would mean walking away from my mother when she

most needed me. I couldn't do that and kept remembering that God doesn't give

us more than we can handle. Every moment provided an ability to grow and to

give my mother what she had so lovingly given me when I was a helpless child in

her arms. It *is* the most difficult part of the journey that is Lewy Body. ***

> >

> > My spirits are low today, I had such hope in those shots, they were going to

give her. I know I have said this before, but I hate this disease with a

passion!!!!

>

> ***I understand that, Beth. I'm glad that you had hope...you could have

hope...that is so important in life. Without hope, we have nothing. Hope for

life can evolve, though, to hope for peace and comfort and still be a positive

force.

>

> My father died in 1974 of emphysema, still a young man. My mother was young,

too, and able to start a new life. Watching his decline over a 9-year-period

(my parents lived with us at the time) and seeing how much quality of life he

slowly, but surely, lost, I eventually could get to the point of realizing it

wasn't his passing that I regretted but, rather, the disease. It came as no

surprise to me that the same realization came with my mother's passing; it just

came a lot sooner. My faith allows me to truly believe that my parents were

reunited and I knew that was something my mother had looked forward to for many

years. There was good in her passing for that reason. But, there was nothing

good about the disease that left her so helpless. Try to focus on what your

aunt would want and allow that to guide you as you remain by her side. Allow

your faith to give you strength and believe that God has your aunt in his hands.

If you are calm, your aunt will also be calmed by your presence and faith.

>

> Please keep in touch with us. We are here with you. Kate, Helene and others

who are reading and sending thoughts and prayers your way.

>

> Best wishes,

> Lynn in Florida

>

[Guest guest]

Hi Lynn,

She did pretty well though the night, her pulse rate stayed in the 50's Her

blood pressure is good morning, so it body temp. Her breathing rate is around 9

which I found resources online that say relaxed breathing rates vary from 9 to

12. I couldn't get her to eat or drink this morning again. I thought sure I

would, I had a good dream & felt God in my dream. I have given her fluids in

the syringe, she took some, but not as much as I would like. She did go to the

bathroom this morning she is still urinating pretty good & also in her depends.

Last night she had a small bowel movement & one of the pills as powder came out,

I was really upset, so it isn't absorbing well.

I called the Pharmacist she said for me to call her Dr. & have them send a

prescription for Ampicillin suppositories, but they haven't called them in yet.

This Hospice is the worst. I mean they don't call back for hours, and when you

do call your on hold for a long time, before someone even answers. It's not bad

enough I am an emotional wreck I have to deal with these kind of things.

> >

> >

> > Hi Lynn I haven't been on much today, the antibiotic has did nothing so far.

She won't eat or drink a thing, only what I give her in the syringe. I thought

sure today she would eat & drink at some point. Her heart rate was in the 30's

early morning & has stayed mostly in the upper 40's all day. It was in the 50's

a few times. Her blood pressure has been good.

>

> *** Hi, Beth. I don't know how quickly the antibiotic will work, in all

honesty. With multiple doses given every day, it may be that smaller doses will

take longer.

>

> It may also be that, as I wrote yesterday, her body is transitioning. I

remember the feeling when it became apparent that was what was happening with my

mother. There was incredible sadness and a feeling of total hopelessness.

Sadness, in spite of the fact that Mom was so very thin and so very helpless,

something she would have hated. As much as I didn't want to lose her, the truth

was that she was going to be released from the terrible trap of Lewy Body. I

imagined her dancing with my father, hugging her mother and father and adoring

her big brother again and it made it easier...not easy, but easier.

Hopelessness because for six years, I had worked to make her life as good as I

could and here I was, not able to do more. It was out of my hands at that

point. The focus then became comfort. Thankfully, I had a wonderful Hospice

team that was always present during those last days...what a wonderful source of

strength and confidence. It is my hope that when your aunt is at that point,

Hospice will be there beside you, too. ***

> >

> > One of my aunt's came back out and spent the day, and I thought hearing her

voice she might eat like she had the night before the icecream. My aunt has had

her eyes open on & off all day, so she is aware of what is going on.

>

> *** The good part about that is that she recognizes she is surrounded by

loving and caring hearts. She needs to know that everyone is okay in order for

her to be okay. I'm so glad everyone is there for her now.***

> >

> > I just feel like running away this is so very hard. I just pray this

medicine will start working soon. She still goes to the bathroom, so she must be

getting some of the fluid I am giving her.

>

> ***Oh, how I remember that! I, too, wished I could walk away from the pain of

Mom's transition. But, that would mean walking away from my mother when she

most needed me. I couldn't do that and kept remembering that God doesn't give

us more than we can handle. Every moment provided an ability to grow and to

give my mother what she had so lovingly given me when I was a helpless child in

her arms. It *is* the most difficult part of the journey that is Lewy Body. ***

> >

> > My spirits are low today, I had such hope in those shots, they were going to

give her. I know I have said this before, but I hate this disease with a

passion!!!!

>

> ***I understand that, Beth. I'm glad that you had hope...you could have

hope...that is so important in life. Without hope, we have nothing. Hope for

life can evolve, though, to hope for peace and comfort and still be a positive

force.

>

> My father died in 1974 of emphysema, still a young man. My mother was young,

too, and able to start a new life. Watching his decline over a 9-year-period

(my parents lived with us at the time) and seeing how much quality of life he

slowly, but surely, lost, I eventually could get to the point of realizing it

wasn't his passing that I regretted but, rather, the disease. It came as no

surprise to me that the same realization came with my mother's passing; it just

came a lot sooner. My faith allows me to truly believe that my parents were

reunited and I knew that was something my mother had looked forward to for many

years. There was good in her passing for that reason. But, there was nothing

good about the disease that left her so helpless. Try to focus on what your

aunt would want and allow that to guide you as you remain by her side. Allow

your faith to give you strength and believe that God has your aunt in his hands.

If you are calm, your aunt will also be calmed by your presence and faith.

>

> Please keep in touch with us. We are here with you. Kate, Helene and others

who are reading and sending thoughts and prayers your way.

>

> Best wishes,

> Lynn in Florida

>

[Guest guest]

Hi Lynn,

She did pretty well though the night, her pulse rate stayed in the 50's Her

blood pressure is good morning, so it body temp. Her breathing rate is around 9

which I found resources online that say relaxed breathing rates vary from 9 to

12. I couldn't get her to eat or drink this morning again. I thought sure I

would, I had a good dream & felt God in my dream. I have given her fluids in

the syringe, she took some, but not as much as I would like. She did go to the

bathroom this morning she is still urinating pretty good & also in her depends.

Last night she had a small bowel movement & one of the pills as powder came out,

I was really upset, so it isn't absorbing well.

I called the Pharmacist she said for me to call her Dr. & have them send a

prescription for Ampicillin suppositories, but they haven't called them in yet.

This Hospice is the worst. I mean they don't call back for hours, and when you

do call your on hold for a long time, before someone even answers. It's not bad

enough I am an emotional wreck I have to deal with these kind of things.

> >

> >

> > Hi Lynn I haven't been on much today, the antibiotic has did nothing so far.

She won't eat or drink a thing, only what I give her in the syringe. I thought

sure today she would eat & drink at some point. Her heart rate was in the 30's

early morning & has stayed mostly in the upper 40's all day. It was in the 50's

a few times. Her blood pressure has been good.

>

> *** Hi, Beth. I don't know how quickly the antibiotic will work, in all

honesty. With multiple doses given every day, it may be that smaller doses will

take longer.

>

> It may also be that, as I wrote yesterday, her body is transitioning. I

remember the feeling when it became apparent that was what was happening with my

mother. There was incredible sadness and a feeling of total hopelessness.

Sadness, in spite of the fact that Mom was so very thin and so very helpless,

something she would have hated. As much as I didn't want to lose her, the truth

was that she was going to be released from the terrible trap of Lewy Body. I

imagined her dancing with my father, hugging her mother and father and adoring

her big brother again and it made it easier...not easy, but easier.

Hopelessness because for six years, I had worked to make her life as good as I

could and here I was, not able to do more. It was out of my hands at that

point. The focus then became comfort. Thankfully, I had a wonderful Hospice

team that was always present during those last days...what a wonderful source of

strength and confidence. It is my hope that when your aunt is at that point,

Hospice will be there beside you, too. ***

> >

> > One of my aunt's came back out and spent the day, and I thought hearing her

voice she might eat like she had the night before the icecream. My aunt has had

her eyes open on & off all day, so she is aware of what is going on.

>

> *** The good part about that is that she recognizes she is surrounded by

loving and caring hearts. She needs to know that everyone is okay in order for

her to be okay. I'm so glad everyone is there for her now.***

> >

> > I just feel like running away this is so very hard. I just pray this

medicine will start working soon. She still goes to the bathroom, so she must be

getting some of the fluid I am giving her.

>

> ***Oh, how I remember that! I, too, wished I could walk away from the pain of

Mom's transition. But, that would mean walking away from my mother when she

most needed me. I couldn't do that and kept remembering that God doesn't give

us more than we can handle. Every moment provided an ability to grow and to

give my mother what she had so lovingly given me when I was a helpless child in

her arms. It *is* the most difficult part of the journey that is Lewy Body. ***

> >

> > My spirits are low today, I had such hope in those shots, they were going to

give her. I know I have said this before, but I hate this disease with a

passion!!!!

>

> ***I understand that, Beth. I'm glad that you had hope...you could have

hope...that is so important in life. Without hope, we have nothing. Hope for

life can evolve, though, to hope for peace and comfort and still be a positive

force.

>

> My father died in 1974 of emphysema, still a young man. My mother was young,

too, and able to start a new life. Watching his decline over a 9-year-period

(my parents lived with us at the time) and seeing how much quality of life he

slowly, but surely, lost, I eventually could get to the point of realizing it

wasn't his passing that I regretted but, rather, the disease. It came as no

surprise to me that the same realization came with my mother's passing; it just

came a lot sooner. My faith allows me to truly believe that my parents were

reunited and I knew that was something my mother had looked forward to for many

years. There was good in her passing for that reason. But, there was nothing

good about the disease that left her so helpless. Try to focus on what your

aunt would want and allow that to guide you as you remain by her side. Allow

your faith to give you strength and believe that God has your aunt in his hands.

If you are calm, your aunt will also be calmed by your presence and faith.

>

> Please keep in touch with us. We are here with you. Kate, Helene and others

who are reading and sending thoughts and prayers your way.

>

> Best wishes,

> Lynn in Florida

>

[Guest guest]

>

> She did pretty well though the night, her pulse rate stayed in the 50's Her

blood pressure is good morning, so it body temp. Her breathing rate is around 9

which I found resources online that say relaxed breathing rates vary from 9 to

12.

*** I remember that with Mom...12 was where she was unless there was some

discomfort. Then, it would go up to somewhere over 20 at times.***

I couldn't get her to eat or drink this morning again. I thought sure I would,

I had a good dream & felt God in my dream. I have given her fluids in the

syringe, she took some, but not as much as I would like. She did go to the

bathroom this morning she is still urinating pretty good & also in her depends.

Last night she had a small bowel movement & one of the pills as powder came out,

I was really upset, so it isn't absorbing well.

***I read online that could be a problem with the suppositories. It's probably

is not uncommon and may be one reason why lower doses are given more

frequently.***

> I called the Pharmacist she said for me to call her Dr. & have them send a

prescription for Ampicillin suppositories, but they haven't called them in yet.

This Hospice is the worst. I mean they don't call back for hours, and when you

do call your on hold for a long time, before someone even answers. It's not bad

enough I am an emotional wreck I have to deal with these kind of things.

*** I am sorry for that, Beth. Is there any office that oversees their

operations? Someone for accountability? I know Hospice gets reimbursed quite

nicely by either the government or insurance companies. There is no reason for

a poor or lazy attitude when it comes to patient care. Do you have a minister

that you can call? If not, Hospice should have a chaplain that can help with

listening. They should also have a counselor to help with support issues, too.

Or, is there a possibility of an alternative Hospice group? There is more than

one in the area in which I live and I believe it is possible to choose another.

I never had to do that because the one which provided Mom's care was more than

satisfactory. It's the weekend so things might be more difficult to check out

but someone should be answering phones.

Did anyone provide you with a number to call in an emergency? I was given a

folder that had a lot of information in it along with phone numbers for various

contact points.

Has anyone spoken with you about what happens when the end-of-life care becomes

a concern? About comfort medications for that time?

I know these are a lot of questions but all were discussed with me well before

Mom's decline became too advanced. The questions scared me at the time but they

also allowed me time to think things through and begin to either ask other

questions or prepare myself for that eventuality. For me, it took time to

prepare myself...

If all else fails, maybe the pharmacist you referenced can provide some

guidance? I'm the type of person who keeps looking under rocks until the right

one reveals an answer to my question. Persistence is my middle name. :-)

We're all standing beside you.

Best wishes,

Lynn in Florida

[Guest guest]

>

> She did pretty well though the night, her pulse rate stayed in the 50's Her

blood pressure is good morning, so it body temp. Her breathing rate is around 9

which I found resources online that say relaxed breathing rates vary from 9 to

12.

*** I remember that with Mom...12 was where she was unless there was some

discomfort. Then, it would go up to somewhere over 20 at times.***

I couldn't get her to eat or drink this morning again. I thought sure I would,

I had a good dream & felt God in my dream. I have given her fluids in the

syringe, she took some, but not as much as I would like. She did go to the

bathroom this morning she is still urinating pretty good & also in her depends.

Last night she had a small bowel movement & one of the pills as powder came out,

I was really upset, so it isn't absorbing well.

***I read online that could be a problem with the suppositories. It's probably

is not uncommon and may be one reason why lower doses are given more

frequently.***

> I called the Pharmacist she said for me to call her Dr. & have them send a

prescription for Ampicillin suppositories, but they haven't called them in yet.

This Hospice is the worst. I mean they don't call back for hours, and when you

do call your on hold for a long time, before someone even answers. It's not bad

enough I am an emotional wreck I have to deal with these kind of things.

*** I am sorry for that, Beth. Is there any office that oversees their

operations? Someone for accountability? I know Hospice gets reimbursed quite

nicely by either the government or insurance companies. There is no reason for

a poor or lazy attitude when it comes to patient care. Do you have a minister

that you can call? If not, Hospice should have a chaplain that can help with

listening. They should also have a counselor to help with support issues, too.

Or, is there a possibility of an alternative Hospice group? There is more than

one in the area in which I live and I believe it is possible to choose another.

I never had to do that because the one which provided Mom's care was more than

satisfactory. It's the weekend so things might be more difficult to check out

but someone should be answering phones.

Did anyone provide you with a number to call in an emergency? I was given a

folder that had a lot of information in it along with phone numbers for various

contact points.

Has anyone spoken with you about what happens when the end-of-life care becomes

a concern? About comfort medications for that time?

I know these are a lot of questions but all were discussed with me well before

Mom's decline became too advanced. The questions scared me at the time but they

also allowed me time to think things through and begin to either ask other

questions or prepare myself for that eventuality. For me, it took time to

prepare myself...

If all else fails, maybe the pharmacist you referenced can provide some

guidance? I'm the type of person who keeps looking under rocks until the right

one reveals an answer to my question. Persistence is my middle name. :-)

We're all standing beside you.

Best wishes,

Lynn in Florida

[Guest guest]

> >

> > She did pretty well though the night, her pulse rate stayed in the 50's Her

blood pressure is good morning, so it body temp. Her breathing rate is around 9

which I found resources online that say relaxed breathing rates vary from 9 to

12.

>

> *** I remember that with Mom...12 was where she was unless there was some

discomfort. Then, it would go up to somewhere over 20 at times.***

>

My aunt's usually are 12, but are 9 & 10 right now. She never goes about 14.

>

> I couldn't get her to eat or drink this morning again. I thought sure I

would, I had a good dream & felt God in my dream. I have given her fluids in

the syringe, she took some, but not as much as I would like. She did go to the

bathroom this morning she is still urinating pretty good & also in her depends.

Last night she had a small bowel movement & one of the pills as powder came out,

I was really upset, so it isn't absorbing well.

>

> ***I read online that could be a problem with the suppositories. It's

probably is not uncommon and may be one reason why lower doses are given more

frequently.***

>

Well the pharmacist said the pills I was given wouldn't stay in & wouldn't

absorb. He said this the new suppositories will dissolve & absorb. The Dr.

told me that her having a UTI does cause the no eating or drinking.

> > I called the Pharmacist she said for me to call her Dr. & have them send a

prescription for Ampicillin suppositories, but they haven't called them in yet.

This Hospice is the worst. I mean they don't call back for hours, and when you

do call your on hold for a long time, before someone even answers. It's not bad

enough I am an emotional wreck I have to deal with these kind of things.

>

> *** I am sorry for that, Beth. Is there any office that oversees their

operations? Someone for accountability? I know Hospice gets reimbursed quite

nicely by either the government or insurance companies. There is no reason for

a poor or lazy attitude when it comes to patient care. Do you have a minister

that you can call? If not, Hospice should have a chaplain that can help with

listening. They should also have a counselor to help with support issues, too.

>

Yes, they do I just haven't looked into it, I just have her on my mind 24/7. I

have been alone so long, I don't seem to want comfort from anyone personally.

It's just been me & my aunt so long. I just keep giving her hugs & kisses.

> Or, is there a possibility of an alternative Hospice group? There is more

than one in the area in which I live and I believe it is possible to choose

another. I never had to do that because the one which provided Mom's care was

more than satisfactory. It's the weekend so things might be more difficult to

check out but someone should be answering phones.

There is, but I haven't looked into it, this just started happening the last few

weeks, I don't know what is going on with this Hospice.

>

> Did anyone provide you with a number to call in an emergency? I was given a

folder that had a lot of information in it along with phone numbers for various

contact points.

I have used that number with the folder they gave me.

>

> Has anyone spoken with you about what happens when the end-of-life care

becomes a concern? About comfort medications for that time?

Yes I do know. She doesn't seem to be in any pain.

>

> I know these are a lot of questions but all were discussed with me well before

Mom's decline became too advanced. The questions scared me at the time but they

also allowed me time to think things through and begin to either ask other

questions or prepare myself for that eventuality. For me, it took time to

prepare myself...

I have heard them many times, and since this has happened every day. I just

can't let her go no matter how much they say it could be or believe it, I just

hold on that God will bring her through this. I still have hope in this new

medication. I just hope she can hold on, she should have been given this

medication to start with 2 days ago. It's been 4 days since she has had solid

food.

>

> If all else fails, maybe the pharmacist you referenced can provide some

guidance? I'm the type of person who keeps looking under rocks until the right

one reveals an answer to my question. Persistence is my middle name. :-)

Yes that is me as well, I am really outspoken when it comes to my aunt, I keep

calling & calling. I don't care if they don't like it or not. The nurse told

me after she finally got around to calling, that she talk to the same pharmacist

& he told her he couldn't make the suppositories. I was like really because I

called & he is making them right now to be picked up in an hour. He gave me

enough for the weekend, and the rest will be ready on Monday. The pharmacy

closes as 12, and if I had waited on her, I wouldn't have had them all weekend.

If you want something done right I have learnt to do it myself.

>

> We're all standing beside you.

I appreciate it very much!

>

> Best wishes,

> Lynn in Florida

>

[Guest guest]

> >

> > She did pretty well though the night, her pulse rate stayed in the 50's Her

blood pressure is good morning, so it body temp. Her breathing rate is around 9

which I found resources online that say relaxed breathing rates vary from 9 to

12.

>

> *** I remember that with Mom...12 was where she was unless there was some

discomfort. Then, it would go up to somewhere over 20 at times.***

>

My aunt's usually are 12, but are 9 & 10 right now. She never goes about 14.

>

> I couldn't get her to eat or drink this morning again. I thought sure I

would, I had a good dream & felt God in my dream. I have given her fluids in

the syringe, she took some, but not as much as I would like. She did go to the

bathroom this morning she is still urinating pretty good & also in her depends.

Last night she had a small bowel movement & one of the pills as powder came out,

I was really upset, so it isn't absorbing well.

>

> ***I read online that could be a problem with the suppositories. It's

probably is not uncommon and may be one reason why lower doses are given more

frequently.***

>

Well the pharmacist said the pills I was given wouldn't stay in & wouldn't

absorb. He said this the new suppositories will dissolve & absorb. The Dr.

told me that her having a UTI does cause the no eating or drinking.

> > I called the Pharmacist she said for me to call her Dr. & have them send a

prescription for Ampicillin suppositories, but they haven't called them in yet.

This Hospice is the worst. I mean they don't call back for hours, and when you

do call your on hold for a long time, before someone even answers. It's not bad

enough I am an emotional wreck I have to deal with these kind of things.

>

> *** I am sorry for that, Beth. Is there any office that oversees their

operations? Someone for accountability? I know Hospice gets reimbursed quite

nicely by either the government or insurance companies. There is no reason for

a poor or lazy attitude when it comes to patient care. Do you have a minister

that you can call? If not, Hospice should have a chaplain that can help with

listening. They should also have a counselor to help with support issues, too.

>

Yes, they do I just haven't looked into it, I just have her on my mind 24/7. I

have been alone so long, I don't seem to want comfort from anyone personally.

It's just been me & my aunt so long. I just keep giving her hugs & kisses.

> Or, is there a possibility of an alternative Hospice group? There is more

than one in the area in which I live and I believe it is possible to choose

another. I never had to do that because the one which provided Mom's care was

more than satisfactory. It's the weekend so things might be more difficult to

check out but someone should be answering phones.

There is, but I haven't looked into it, this just started happening the last few

weeks, I don't know what is going on with this Hospice.

>

> Did anyone provide you with a number to call in an emergency? I was given a

folder that had a lot of information in it along with phone numbers for various

contact points.

I have used that number with the folder they gave me.

>

> Has anyone spoken with you about what happens when the end-of-life care

becomes a concern? About comfort medications for that time?

Yes I do know. She doesn't seem to be in any pain.

>

> I know these are a lot of questions but all were discussed with me well before

Mom's decline became too advanced. The questions scared me at the time but they

also allowed me time to think things through and begin to either ask other

questions or prepare myself for that eventuality. For me, it took time to

prepare myself...

I have heard them many times, and since this has happened every day. I just

can't let her go no matter how much they say it could be or believe it, I just

hold on that God will bring her through this. I still have hope in this new

medication. I just hope she can hold on, she should have been given this

medication to start with 2 days ago. It's been 4 days since she has had solid

food.

>

> If all else fails, maybe the pharmacist you referenced can provide some

guidance? I'm the type of person who keeps looking under rocks until the right

one reveals an answer to my question. Persistence is my middle name. :-)

Yes that is me as well, I am really outspoken when it comes to my aunt, I keep

calling & calling. I don't care if they don't like it or not. The nurse told

me after she finally got around to calling, that she talk to the same pharmacist

& he told her he couldn't make the suppositories. I was like really because I

called & he is making them right now to be picked up in an hour. He gave me

enough for the weekend, and the rest will be ready on Monday. The pharmacy

closes as 12, and if I had waited on her, I wouldn't have had them all weekend.

If you want something done right I have learnt to do it myself.

>

> We're all standing beside you.

I appreciate it very much!

>

> Best wishes,

> Lynn in Florida

>

[Guest guest]

> Well the pharmacist said the pills I was given wouldn't stay in & wouldn't

absorb. He said this the new suppositories will dissolve & absorb. The Dr.

told me that her having a UTI does cause the no eating or drinking.

*** A UTI can cause that, Beth. I would say that was the case as long as she

wants to take food and/or liquids. I've also found that there are times when

I'd rather talk with a pharmacist I trusted than a doctor. Mom had a nasty

upper respiratory virus last year...a nebulizer was ordered but didn't seem to

be working well. I spoke with the pharmacist about a medication, concerned

about an LBD adverse reaction. By the end of the conversation, the pharmacist

had time to look at Mom's history and prescriptions and provide a better

solution for the extreme congestion...which was passed on to the doctor by me

and then ordered by the doctor. Problem solved! Sometimes, a pharmacist can be

a wonderful resource. ***

> Yes, they do I just haven't looked into it, I just have her on my mind 24/7.

I have been alone so long, I don't seem to want comfort from anyone personally.

It's just been me & my aunt so long. I just keep giving her hugs & kisses.

>

> There is, but I haven't looked into it, this just started happening the last

few weeks, I don't know what is going on with this Hospice.

*** It is probably a good time to start checking into the alternative, Beth.

It's always better to get things lined up before a crisis so that a good plan of

action can be in place and enacted when needed. This is the type of thing that

needs to be done as early as possible for everyone's sake, especially your aunt.

Remember, you're doing this for your aunt and no one else. She is the primary

concern here...her comfort and safety. ***

>Yes I do know. She doesn't seem to be in any pain.

***I'm glad that she doesn't seem to have pain. The quicker you can get things

in order, the better it will be for her if pain should occur. It's always

better to stay ahead of pain rather than trying to catch up with it after it

takes hold. If your aunt does experience pain and show it, the stress on you

also becomes more magnified. Never put yourself in a position of having

regrets...it's hard to stay ahead of the game but it is possible with good

planning.***

> I have heard them many times, and since this has happened every day. I just

can't let her go no matter how much they say it could be or believe it, I just

hold on that God will bring her through this. I still have hope in this new

medication. I just hope she can hold on, she should have been given this

medication to start with 2 days ago. It's been 4 days since she has had solid

food.

***No matter how hard you try, there will be a time when you will have to let

go. Having given so much of yourself for your aunt for so long may make that

more difficult but it will happen.

I remember meeting with my mother's Hospice nurses...asking them if I was unduly

extending my mother's life by treating UTIs or bronchitis. The answer from them

was very comforting to me...that it was in God's hands. If it was Mom's time to

leave, she would leave regardless of treatment for infections. I thought about

that off and on for a few weeks before coming to terms with myself. It was not

within my control. I continued to ask for treatment for infections because I

couldn't live with myself if I didn't. When Mom's time came for her journey to

end, nothing I could do would stop it. Her body had taken the journey as far as

it could. She was not a quitter. I had not let her down. It was just time for

her to be released from the disease and be reunited with those who passed before

her.

Having accepted that inevitable conclusion earlier, Mom's final days were

peaceful for both her and me. I think with it being more peaceful for me, Mom

felt more peace, too. There was no undue tension in the room. Those who

stopped to say their final words shared memories and laughter...Mom was aware of

that and I'm sure she inwardly smiled with some of the stories shared. It was

important for her to know that I would be okay...that I would enjoy the

remainder of my life, confident that I would see her again one day. One of the

nurses who spent multiple days with Mom on continuous care told me that Mom had

the most peaceful transition of anyone in her care. Perhaps that was my reward

for accepting what was inevitable...knowledge that Mom was helped by my

acceptance. ***

> Yes that is me as well, I am really outspoken when it comes to my aunt, I keep

calling & calling. I don't care if they don't like it or not. The nurse told

me after she finally got around to calling, that she talk to the same pharmacist

& he told her he couldn't make the suppositories. I was like really because I

called & he is making them right now to be picked up in an hour. He gave me

enough for the weekend, and the rest will be ready on Monday. The pharmacy

closes as 12, and if I had waited on her, I wouldn't have had them all weekend.

If you want something done right I have learnt to do it myself.

***I had that happen one time several years ago. The staff nurse had dropped

the ball with an order for antibiotics. Because the paperwork was not properly

completed, the pharmacy merely filed the order. I pushed for an answer but it

wasn't immediate. Finally, I called the pharmacy myself and learned what

happened. Because it was, by then, a Sunday, I was told I would need to pay an

additional fee for the special delivery. Needless to say, the medication was

delivered in a timely manner and I did NOT pay the additional fee. It is

necessary to stay on top of things. But, it is also necessary to be right in

taking a stance.

Remain by your aunt as you have been doing. But, be aware that sooner or later,

she will have to leave. Her body will just not be able to sustain life further.

At that point, it would be unkind to try and force life to continue. It could

also be painful for your aunt. As much as you have loved her and cared for her,

I'm certain that is not something you would want.

Best wishes,

Lynn in Florida

[Guest guest]

It's hard to know if she wants something to eat, because she is not taking

anything by mouth only the liquid by the syringe. Your mother took some food by

mouth & liquid when she had a really bad UTI or did she completely stop both til

she felt better?

I know all you say is true, and as I feel lead by God I will let go, but right

now I don't feel it's time. I hold on to the antibiotics right now I have too.

I am not forcing anything on her, I am doing my best for her while she is with

me.

I appreciate all your time in answering me I really do.

Beth

> > Well the pharmacist said the pills I was given wouldn't stay in & wouldn't

absorb. He said this the new suppositories will dissolve & absorb. The Dr.

told me that her having a UTI does cause the no eating or drinking.

>

> *** A UTI can cause that, Beth. I would say that was the case as long as she

wants to take food and/or liquids. I've also found that there are times when

I'd rather talk with a pharmacist I trusted than a doctor. Mom had a nasty

upper respiratory virus last year...a nebulizer was ordered but didn't seem to

be working well. I spoke with the pharmacist about a medication, concerned

about an LBD adverse reaction. By the end of the conversation, the pharmacist

had time to look at Mom's history and prescriptions and provide a better

solution for the extreme congestion...which was passed on to the doctor by me

and then ordered by the doctor. Problem solved! Sometimes, a pharmacist can be

a wonderful resource. ***

>

> > Yes, they do I just haven't looked into it, I just have her on my mind 24/7.

I have been alone so long, I don't seem to want comfort from anyone personally.

It's just been me & my aunt so long. I just keep giving her hugs & kisses.

> >

> > There is, but I haven't looked into it, this just started happening the last

few weeks, I don't know what is going on with this Hospice.

>

> *** It is probably a good time to start checking into the alternative, Beth.

It's always better to get things lined up before a crisis so that a good plan of

action can be in place and enacted when needed. This is the type of thing that

needs to be done as early as possible for everyone's sake, especially your aunt.

Remember, you're doing this for your aunt and no one else. She is the primary

concern here...her comfort and safety. ***

>

> >Yes I do know. She doesn't seem to be in any pain.

>

> ***I'm glad that she doesn't seem to have pain. The quicker you can get

things in order, the better it will be for her if pain should occur. It's

always better to stay ahead of pain rather than trying to catch up with it after

it takes hold. If your aunt does experience pain and show it, the stress on you

also becomes more magnified. Never put yourself in a position of having

regrets...it's hard to stay ahead of the game but it is possible with good

planning.***

>

> > I have heard them many times, and since this has happened every day. I just

can't let her go no matter how much they say it could be or believe it, I just

hold on that God will bring her through this. I still have hope in this new

medication. I just hope she can hold on, she should have been given this

medication to start with 2 days ago. It's been 4 days since she has had solid

food.

>

> ***No matter how hard you try, there will be a time when you will have to let

go. Having given so much of yourself for your aunt for so long may make that

more difficult but it will happen.

>

> I remember meeting with my mother's Hospice nurses...asking them if I was

unduly extending my mother's life by treating UTIs or bronchitis. The answer

from them was very comforting to me...that it was in God's hands. If it was

Mom's time to leave, she would leave regardless of treatment for infections. I

thought about that off and on for a few weeks before coming to terms with

myself. It was not within my control. I continued to ask for treatment for

infections because I couldn't live with myself if I didn't. When Mom's time

came for her journey to end, nothing I could do would stop it. Her body had

taken the journey as far as it could. She was not a quitter. I had not let her

down. It was just time for her to be released from the disease and be reunited

with those who passed before her.

>

> Having accepted that inevitable conclusion earlier, Mom's final days were

peaceful for both her and me. I think with it being more peaceful for me, Mom

felt more peace, too. There was no undue tension in the room. Those who

stopped to say their final words shared memories and laughter...Mom was aware of

that and I'm sure she inwardly smiled with some of the stories shared. It was

important for her to know that I would be okay...that I would enjoy the

remainder of my life, confident that I would see her again one day. One of the

nurses who spent multiple days with Mom on continuous care told me that Mom had

the most peaceful transition of anyone in her care. Perhaps that was my reward

for accepting what was inevitable...knowledge that Mom was helped by my

acceptance. ***

>

> > Yes that is me as well, I am really outspoken when it comes to my aunt, I

keep calling & calling. I don't care if they don't like it or not. The nurse

told me after she finally got around to calling, that she talk to the same

pharmacist & he told her he couldn't make the suppositories. I was like really

because I called & he is making them right now to be picked up in an hour. He

gave me enough for the weekend, and the rest will be ready on Monday. The

pharmacy closes as 12, and if I had waited on her, I wouldn't have had them all

weekend. If you want something done right I have learnt to do it myself.

>

> ***I had that happen one time several years ago. The staff nurse had dropped

the ball with an order for antibiotics. Because the paperwork was not properly

completed, the pharmacy merely filed the order. I pushed for an answer but it

wasn't immediate. Finally, I called the pharmacy myself and learned what

happened. Because it was, by then, a Sunday, I was told I would need to pay an

additional fee for the special delivery. Needless to say, the medication was

delivered in a timely manner and I did NOT pay the additional fee. It is

necessary to stay on top of things. But, it is also necessary to be right in

taking a stance.

>

> Remain by your aunt as you have been doing. But, be aware that sooner or

later, she will have to leave. Her body will just not be able to sustain life

further. At that point, it would be unkind to try and force life to continue.

It could also be painful for your aunt. As much as you have loved her and cared

for her, I'm certain that is not something you would want.

>

> Best wishes,

> Lynn in Florida

>

[Guest guest]

It's hard to know if she wants something to eat, because she is not taking

anything by mouth only the liquid by the syringe. Your mother took some food by

mouth & liquid when she had a really bad UTI or did she completely stop both til

she felt better?

I know all you say is true, and as I feel lead by God I will let go, but right

now I don't feel it's time. I hold on to the antibiotics right now I have too.

I am not forcing anything on her, I am doing my best for her while she is with

me.

I appreciate all your time in answering me I really do.

Beth

> > Well the pharmacist said the pills I was given wouldn't stay in & wouldn't

absorb. He said this the new suppositories will dissolve & absorb. The Dr.

told me that her having a UTI does cause the no eating or drinking.

>

> *** A UTI can cause that, Beth. I would say that was the case as long as she

wants to take food and/or liquids. I've also found that there are times when

I'd rather talk with a pharmacist I trusted than a doctor. Mom had a nasty

upper respiratory virus last year...a nebulizer was ordered but didn't seem to

be working well. I spoke with the pharmacist about a medication, concerned

about an LBD adverse reaction. By the end of the conversation, the pharmacist

had time to look at Mom's history and prescriptions and provide a better

solution for the extreme congestion...which was passed on to the doctor by me

and then ordered by the doctor. Problem solved! Sometimes, a pharmacist can be

a wonderful resource. ***

>

> > Yes, they do I just haven't looked into it, I just have her on my mind 24/7.

I have been alone so long, I don't seem to want comfort from anyone personally.

It's just been me & my aunt so long. I just keep giving her hugs & kisses.

> >

> > There is, but I haven't looked into it, this just started happening the last

few weeks, I don't know what is going on with this Hospice.

>

> *** It is probably a good time to start checking into the alternative, Beth.

It's always better to get things lined up before a crisis so that a good plan of

action can be in place and enacted when needed. This is the type of thing that

needs to be done as early as possible for everyone's sake, especially your aunt.

Remember, you're doing this for your aunt and no one else. She is the primary

concern here...her comfort and safety. ***

>

> >Yes I do know. She doesn't seem to be in any pain.

>

> ***I'm glad that she doesn't seem to have pain. The quicker you can get

things in order, the better it will be for her if pain should occur. It's

always better to stay ahead of pain rather than trying to catch up with it after

it takes hold. If your aunt does experience pain and show it, the stress on you

also becomes more magnified. Never put yourself in a position of having

regrets...it's hard to stay ahead of the game but it is possible with good

planning.***

>

> > I have heard them many times, and since this has happened every day. I just

can't let her go no matter how much they say it could be or believe it, I just

hold on that God will bring her through this. I still have hope in this new

medication. I just hope she can hold on, she should have been given this

medication to start with 2 days ago. It's been 4 days since she has had solid

food.

>

> ***No matter how hard you try, there will be a time when you will have to let

go. Having given so much of yourself for your aunt for so long may make that

more difficult but it will happen.

>

> I remember meeting with my mother's Hospice nurses...asking them if I was

unduly extending my mother's life by treating UTIs or bronchitis. The answer

from them was very comforting to me...that it was in God's hands. If it was

Mom's time to leave, she would leave regardless of treatment for infections. I

thought about that off and on for a few weeks before coming to terms with

myself. It was not within my control. I continued to ask for treatment for

infections because I couldn't live with myself if I didn't. When Mom's time

came for her journey to end, nothing I could do would stop it. Her body had

taken the journey as far as it could. She was not a quitter. I had not let her

down. It was just time for her to be released from the disease and be reunited

with those who passed before her.

>

> Having accepted that inevitable conclusion earlier, Mom's final days were

peaceful for both her and me. I think with it being more peaceful for me, Mom

felt more peace, too. There was no undue tension in the room. Those who

stopped to say their final words shared memories and laughter...Mom was aware of

that and I'm sure she inwardly smiled with some of the stories shared. It was

important for her to know that I would be okay...that I would enjoy the

remainder of my life, confident that I would see her again one day. One of the

nurses who spent multiple days with Mom on continuous care told me that Mom had

the most peaceful transition of anyone in her care. Perhaps that was my reward

for accepting what was inevitable...knowledge that Mom was helped by my

acceptance. ***

>

> > Yes that is me as well, I am really outspoken when it comes to my aunt, I

keep calling & calling. I don't care if they don't like it or not. The nurse

told me after she finally got around to calling, that she talk to the same

pharmacist & he told her he couldn't make the suppositories. I was like really

because I called & he is making them right now to be picked up in an hour. He

gave me enough for the weekend, and the rest will be ready on Monday. The

pharmacy closes as 12, and if I had waited on her, I wouldn't have had them all

weekend. If you want something done right I have learnt to do it myself.

>

> ***I had that happen one time several years ago. The staff nurse had dropped

the ball with an order for antibiotics. Because the paperwork was not properly

completed, the pharmacy merely filed the order. I pushed for an answer but it

wasn't immediate. Finally, I called the pharmacy myself and learned what

happened. Because it was, by then, a Sunday, I was told I would need to pay an

additional fee for the special delivery. Needless to say, the medication was

delivered in a timely manner and I did NOT pay the additional fee. It is

necessary to stay on top of things. But, it is also necessary to be right in

taking a stance.

>

> Remain by your aunt as you have been doing. But, be aware that sooner or

later, she will have to leave. Her body will just not be able to sustain life

further. At that point, it would be unkind to try and force life to continue.

It could also be painful for your aunt. As much as you have loved her and cared

for her, I'm certain that is not something you would want.

>

> Best wishes,

> Lynn in Florida

>

[Guest guest]

>

>

> It's hard to know if she wants something to eat, because she is not taking

anything by mouth only the liquid by the syringe. Your mother took some food by

mouth & liquid when she had a really bad UTI or did she completely stop both til

she felt better?

***Yes, Mom took less when she had a UTI, Beth. But, she took less and less over

the past six months of her life, too. When I moved her to prepared baby food

(no spices and consistent texture unlike the puree served at the facility), I

was happy if she ate two ounces of a main course (protein) and two ounces of a

dessert or vegetable at a meal. That's not much food for an adult. After a

month on that, she wouldn't/couldn't swallow anything suddenly. She had been

slowly winding down while on the baby food. February 20th, she began missing a

meal here and there. February 23rd, she ate breakfast and then only a few

spoons at lunch. At dinner that day, she could no longer swallow. Her Hospice

nurse was beside me at that meal. We knew there would be no more trying at that

point. To risk more would risk aspiration pneumonia. As much as I worked to

prevent such a thing from happening, risking that wasn't even an option.

Prior to that, Hospice advised that Mom could live (make that exist) for quite a

while with no foods and only liquids. I think hearing that makes one look

forward to relief for the one they love. As I wrote when this exchange first

began, Mom probably weighed only 75 pounds when she passed. Mom was 5'7 " tall.

She was literally skin and bones.***

> I know all you say is true, and as I feel lead by God I will let go, but right

now I don't feel it's time. I hold on to the antibiotics right now I have too.

I am not forcing anything on her, I am doing my best for her while she is with

me.

***It may not be time right now. But, each time your aunt faces a crisis, the

toll on her is more permanent. Each time my mother had an infection, when she

recovered, she was never where she was before the infection. She had always

demonstrated a decline.

I don't know the reason for Mom being in such a prolonged journey. Knowing my

mother, as much as she wanted to be reunited with my father, she didn't want to

leave me. All of my life, she had been my biggest fan and I was, along with her

grandchildren, her pride and joy. She truly needed to be sure that I would be

okay.

Your aunt needs to know that you will be okay, too. Please let her know that.

It doesn't have to be saying the words, " good bye " . You can let her know that

she has taught you patience and the meaning of inner strength...that she has

given you unconditional love and a great sense of confidence. Let her know that

the memories you shared will always be with you and that you will always carry

her in your heart. Believe that because it is true. Eventually, the pain you

feel now will subside and you will look back at these years with pride and love

for you will have accomplished what many either cannot do or choose not to do.

As Mom's final days passed, staff where she was came in daily to reassure her

that I would be okay. They sang to her. They prayed with her. I only know

this because the Hospice nurse shared it with me. There are angels all around

us. We just have to let them in to do their work. I didn't totally think I was

a strong person. Others told me I was but I didn't believe it. I'm not sure if

I am strong or if the angels propped me up so I could do what had to be done.

Best wishes,

Lynn in Florida