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Re: Rocephin,UTI Nystatin Thrush

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My comments are below, separated by ***.

>

> I have posted here a couple times in the last few days. I have been worried

about my aunt not eating or drinking with the weather changes. The nurse said

she had a mild case of thrush. <snip> Is this common not wanting to eat or

drink with thrush?

*** I am wondering if she has any pain in her mouth with this? Or, possibly,

her sense of taste is altered? Maybe others have suggestions. I also wonder if

her stomach might be upset with the infection and the treatment? ***

>

> Today they called in Rocephin I don't know anything about this either. They

want to give her a 1 gram shot a day for 3 days. She doesn't have much muscle

mass, so I am worried about these shots & the side effects. Anyone have any

thoughts on this?

*** My mother had allergies to multiple antibiotics. Rocephin was the

antibiotic of choice whenever she had a UTI, which was frequently. The staff

hated giving her the shots, too, because she was literally skin and bones. But,

it was the only way to treat the infection. My fear was sepsis if it wasn't

treated. Mom would perk up right away then plateau until the antibiotics were

completed. I'm not sure if 3 days is sufficient, though, if there is an

infection. You may want to wait a few days after the antibiotics are completed

and then ask for a culture. Sometimes, it would take more than one round of

Rocephin to clear everything. ***

>

> I was wondering also how much liquid should I give her a day by dropper? It's

only 1cc I think. One nurse told me 1600 a day & another told me 30cc every

hour. I am new to this as well. Sorry for so many questions.

*** I know fluids are important with the antibiotics. However, my mother rarely

drank enough to meet the suggested amounts. I always looked at soups, ice

cream, juices, etc., as fluids.

Side note: When Mom was in her final days, I was amazed that, after 7 days of

no fluid or food intake, she still produced urine. This was after months of

taking in little of either, too. She certainly had no fluid retention issues.

Perhaps even a little fluid will do until your aunt feels better.

This is a difficult journey to take with our loved ones. You're doing a great

job...singing to her is wonderful. I'm certain it gives her a reason to

smile...

Best wishes,

Lynn in Florida

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Guest guest

My comments are below, separated by ***.

>

> I have posted here a couple times in the last few days. I have been worried

about my aunt not eating or drinking with the weather changes. The nurse said

she had a mild case of thrush. <snip> Is this common not wanting to eat or

drink with thrush?

*** I am wondering if she has any pain in her mouth with this? Or, possibly,

her sense of taste is altered? Maybe others have suggestions. I also wonder if

her stomach might be upset with the infection and the treatment? ***

>

> Today they called in Rocephin I don't know anything about this either. They

want to give her a 1 gram shot a day for 3 days. She doesn't have much muscle

mass, so I am worried about these shots & the side effects. Anyone have any

thoughts on this?

*** My mother had allergies to multiple antibiotics. Rocephin was the

antibiotic of choice whenever she had a UTI, which was frequently. The staff

hated giving her the shots, too, because she was literally skin and bones. But,

it was the only way to treat the infection. My fear was sepsis if it wasn't

treated. Mom would perk up right away then plateau until the antibiotics were

completed. I'm not sure if 3 days is sufficient, though, if there is an

infection. You may want to wait a few days after the antibiotics are completed

and then ask for a culture. Sometimes, it would take more than one round of

Rocephin to clear everything. ***

>

> I was wondering also how much liquid should I give her a day by dropper? It's

only 1cc I think. One nurse told me 1600 a day & another told me 30cc every

hour. I am new to this as well. Sorry for so many questions.

*** I know fluids are important with the antibiotics. However, my mother rarely

drank enough to meet the suggested amounts. I always looked at soups, ice

cream, juices, etc., as fluids.

Side note: When Mom was in her final days, I was amazed that, after 7 days of

no fluid or food intake, she still produced urine. This was after months of

taking in little of either, too. She certainly had no fluid retention issues.

Perhaps even a little fluid will do until your aunt feels better.

This is a difficult journey to take with our loved ones. You're doing a great

job...singing to her is wonderful. I'm certain it gives her a reason to

smile...

Best wishes,

Lynn in Florida

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Guest guest

> >

> > I have posted here a couple times in the last few days. I have been worried

about my aunt not eating or drinking with the weather changes. The nurse said

she had a mild case of thrush. <snip> Is this common not wanting to eat or

drink with thrush?

>

> *** I am wondering if she has any pain in her mouth with this? Or, possibly,

her sense of taste is altered? Maybe others have suggestions. I also wonder if

her stomach might be upset with the infection and the treatment? ***

> >

> > Today they called in Rocephin I don't know anything about this either. They

want to give her a 1 gram shot a day for 3 days. She doesn't have much muscle

mass, so I am worried about these shots & the side effects. Anyone have any

thoughts on this?

>

> *** My mother had allergies to multiple antibiotics. Rocephin was the

antibiotic of choice whenever she had a UTI, which was frequently. The staff

hated giving her the shots, too, because she was literally skin and bones. But,

it was the only way to treat the infection. My fear was sepsis if it wasn't

treated. Mom would perk up right away then plateau until the antibiotics were

completed. I'm not sure if 3 days is sufficient, though, if there is an

infection. You may want to wait a few days after the antibiotics are completed

and then ask for a culture. Sometimes, it would take more than one round of

Rocephin to clear everything. ***

> >

> > I was wondering also how much liquid should I give her a day by dropper?

It's only 1cc I think. One nurse told me 1600 a day & another told me 30cc

every hour. I am new to this as well. Sorry for so many questions.

>

> *** I know fluids are important with the antibiotics. However, my mother

rarely drank enough to meet the suggested amounts. I always looked at soups,

ice cream, juices, etc., as fluids.

>

> Side note: When Mom was in her final days, I was amazed that, after 7 days of

no fluid or food intake, she still produced urine. This was after months of

taking in little of either, too. She certainly had no fluid retention issues.

Perhaps even a little fluid will do until your aunt feels better.

>

> This is a difficult journey to take with our loved ones. You're doing a great

job...singing to her is wonderful. I'm certain it gives her a reason to

smile...

>

> Best wishes,

> Lynn in Florida

>

Hi Lynn,

Thank you for responding it means so much. How many shots of Rocephin did your

mother get when she had UTI's? I can't get her to take in anything since

starting the Nystatin no ice cream at all which is her favorite. I could always

count on that. She loves juices, but I can't get any of those in her either.

Did your mother sleep a lot not eat & drink with the UTI's?

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> >

> > I have posted here a couple times in the last few days. I have been worried

about my aunt not eating or drinking with the weather changes. The nurse said

she had a mild case of thrush. <snip> Is this common not wanting to eat or

drink with thrush?

>

> *** I am wondering if she has any pain in her mouth with this? Or, possibly,

her sense of taste is altered? Maybe others have suggestions. I also wonder if

her stomach might be upset with the infection and the treatment? ***

> >

> > Today they called in Rocephin I don't know anything about this either. They

want to give her a 1 gram shot a day for 3 days. She doesn't have much muscle

mass, so I am worried about these shots & the side effects. Anyone have any

thoughts on this?

>

> *** My mother had allergies to multiple antibiotics. Rocephin was the

antibiotic of choice whenever she had a UTI, which was frequently. The staff

hated giving her the shots, too, because she was literally skin and bones. But,

it was the only way to treat the infection. My fear was sepsis if it wasn't

treated. Mom would perk up right away then plateau until the antibiotics were

completed. I'm not sure if 3 days is sufficient, though, if there is an

infection. You may want to wait a few days after the antibiotics are completed

and then ask for a culture. Sometimes, it would take more than one round of

Rocephin to clear everything. ***

> >

> > I was wondering also how much liquid should I give her a day by dropper?

It's only 1cc I think. One nurse told me 1600 a day & another told me 30cc

every hour. I am new to this as well. Sorry for so many questions.

>

> *** I know fluids are important with the antibiotics. However, my mother

rarely drank enough to meet the suggested amounts. I always looked at soups,

ice cream, juices, etc., as fluids.

>

> Side note: When Mom was in her final days, I was amazed that, after 7 days of

no fluid or food intake, she still produced urine. This was after months of

taking in little of either, too. She certainly had no fluid retention issues.

Perhaps even a little fluid will do until your aunt feels better.

>

> This is a difficult journey to take with our loved ones. You're doing a great

job...singing to her is wonderful. I'm certain it gives her a reason to

smile...

>

> Best wishes,

> Lynn in Florida

>

Hi Lynn,

Thank you for responding it means so much. How many shots of Rocephin did your

mother get when she had UTI's? I can't get her to take in anything since

starting the Nystatin no ice cream at all which is her favorite. I could always

count on that. She loves juices, but I can't get any of those in her either.

Did your mother sleep a lot not eat & drink with the UTI's?

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I'll answer your question, first, with some research I had done online. In a

report I found, the author stated that UTIs in elderly women should be treated

for 10 days and in elderly men, for 14 days. It was felt that was the best way

to totally clear an infection. I discussed it with Mom's doctor and he agreed,

although he didn't always write a 10-day prescription...often, it was only for 7

days. Mom got, if my memory is correct, one shot daily. Her doctor felt the

shot would be tolerated better than an oral med which could upset her stomach.

I could get Mom to drink a Boost or Ensure as she declined. She loved chocolate

so usually drank that with little resistance. She also would drink bottled

Vitamin water. I believe I bought the XXX version, a fruit blend that she

enjoyed and which helped to boost her immune system a bit. On sale, it's about

$1.00 a bottle and that would last for two days initially. As she declined,

though, she didn't drink as much... You may find that your aunt will drink more

as the antibiotic does its work.

My mother passed six weeks ago. However, when she did have a UTI, she would

sleep more and be generally weaker. With the excessive sleep, there was less

food and fluid intake. When her decline deepened, it became more difficult to

determine if a UTI might be a factor. It's often necessary to watch for things

like fatigue and mood changes and doing a culture when it's more than a few

days. D-Mannose helped Mom with the e-coli but not with other bacteria that

could appear.

Hope this helps a little.

Best wishes,

Lynn in FL

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> Hi Lynn,

>

> Thank you for responding it means so much. How many shots of Rocephin did

your mother get when she had UTI's? I can't get her to take in anything since

starting the Nystatin no ice cream at all which is her favorite. I could always

count on that. She loves juices, but I can't get any of those in her either.

Did your mother sleep a lot not eat & drink with the UTI's?

>

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Guest guest

I'll answer your question, first, with some research I had done online. In a

report I found, the author stated that UTIs in elderly women should be treated

for 10 days and in elderly men, for 14 days. It was felt that was the best way

to totally clear an infection. I discussed it with Mom's doctor and he agreed,

although he didn't always write a 10-day prescription...often, it was only for 7

days. Mom got, if my memory is correct, one shot daily. Her doctor felt the

shot would be tolerated better than an oral med which could upset her stomach.

I could get Mom to drink a Boost or Ensure as she declined. She loved chocolate

so usually drank that with little resistance. She also would drink bottled

Vitamin water. I believe I bought the XXX version, a fruit blend that she

enjoyed and which helped to boost her immune system a bit. On sale, it's about

$1.00 a bottle and that would last for two days initially. As she declined,

though, she didn't drink as much... You may find that your aunt will drink more

as the antibiotic does its work.

My mother passed six weeks ago. However, when she did have a UTI, she would

sleep more and be generally weaker. With the excessive sleep, there was less

food and fluid intake. When her decline deepened, it became more difficult to

determine if a UTI might be a factor. It's often necessary to watch for things

like fatigue and mood changes and doing a culture when it's more than a few

days. D-Mannose helped Mom with the e-coli but not with other bacteria that

could appear.

Hope this helps a little.

Best wishes,

Lynn in FL

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> Hi Lynn,

>

> Thank you for responding it means so much. How many shots of Rocephin did

your mother get when she had UTI's? I can't get her to take in anything since

starting the Nystatin no ice cream at all which is her favorite. I could always

count on that. She loves juices, but I can't get any of those in her either.

Did your mother sleep a lot not eat & drink with the UTI's?

>

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Hi Lynn,

I'm so sorry you lost your mother, you have my deepest sympathy, what these poor

souls go through is unimaginable.

Thank you again for responding to my questions. So if I understand correctly

your mother got 7 shots each time she had a UTI? She doesn't do well with oral

meds so this would be better he said.

I haven't been able to get my aunt to drink much Ensure she did for awhile, but

she grew tired of it. I tried Boost etc, but she never liked any of them. She

loves her juices, & ice cream. She doesn't really care for milkshakes or

smoothies.

The thing is with my aunt she never shows symptoms of uti, she sleeps more with

weather changes so I can never tell. I use those uti dipsticks, and they always

seem to turn out okay. Luckily the D-mannose took care of all her UTI, but one

& it was a strep infection which we think the nurse caused when she did the

cath.

I have taken care of her for 10 years fulltime just me & her 24/7. She is more

my mother than my aunt, because she raise me. I am really worried it's not a

UTI & she is leaving this world. I pray that the shots work. I am worried now

with her only getting 3 & it should be more. I will talk to the nurse tomorrow.

She has been in Hospice care for a year, and they don't like to do much. I stop

giving her the Nystatin, and I have been using warm salt water with a syringe to

put in her mouth, as well as coating it with plain yogurt. I hope she gets up in

the morning & has an appetite. Since the thrush started she hasn't been hungry

or thirsty. The nurse said maybe her throat is sore, I notice she is swallowing

harder so it could be.

> > Hi Lynn,

> >

> > Thank you for responding it means so much. How many shots of Rocephin did

your mother get when she had UTI's? I can't get her to take in anything since

starting the Nystatin no ice cream at all which is her favorite. I could always

count on that. She loves juices, but I can't get any of those in her either.

Did your mother sleep a lot not eat & drink with the UTI's?

> >

>

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Guest guest

Hi Lynn,

I'm so sorry you lost your mother, you have my deepest sympathy, what these poor

souls go through is unimaginable.

Thank you again for responding to my questions. So if I understand correctly

your mother got 7 shots each time she had a UTI? She doesn't do well with oral

meds so this would be better he said.

I haven't been able to get my aunt to drink much Ensure she did for awhile, but

she grew tired of it. I tried Boost etc, but she never liked any of them. She

loves her juices, & ice cream. She doesn't really care for milkshakes or

smoothies.

The thing is with my aunt she never shows symptoms of uti, she sleeps more with

weather changes so I can never tell. I use those uti dipsticks, and they always

seem to turn out okay. Luckily the D-mannose took care of all her UTI, but one

& it was a strep infection which we think the nurse caused when she did the

cath.

I have taken care of her for 10 years fulltime just me & her 24/7. She is more

my mother than my aunt, because she raise me. I am really worried it's not a

UTI & she is leaving this world. I pray that the shots work. I am worried now

with her only getting 3 & it should be more. I will talk to the nurse tomorrow.

She has been in Hospice care for a year, and they don't like to do much. I stop

giving her the Nystatin, and I have been using warm salt water with a syringe to

put in her mouth, as well as coating it with plain yogurt. I hope she gets up in

the morning & has an appetite. Since the thrush started she hasn't been hungry

or thirsty. The nurse said maybe her throat is sore, I notice she is swallowing

harder so it could be.

> > Hi Lynn,

> >

> > Thank you for responding it means so much. How many shots of Rocephin did

your mother get when she had UTI's? I can't get her to take in anything since

starting the Nystatin no ice cream at all which is her favorite. I could always

count on that. She loves juices, but I can't get any of those in her either.

Did your mother sleep a lot not eat & drink with the UTI's?

> >

>

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Guest guest

Hi Lynn,

I'm so sorry you lost your mother, you have my deepest sympathy, what these poor

souls go through is unimaginable.

Thank you again for responding to my questions. So if I understand correctly

your mother got 7 shots each time she had a UTI? She doesn't do well with oral

meds so this would be better he said.

I haven't been able to get my aunt to drink much Ensure she did for awhile, but

she grew tired of it. I tried Boost etc, but she never liked any of them. She

loves her juices, & ice cream. She doesn't really care for milkshakes or

smoothies.

The thing is with my aunt she never shows symptoms of uti, she sleeps more with

weather changes so I can never tell. I use those uti dipsticks, and they always

seem to turn out okay. Luckily the D-mannose took care of all her UTI, but one

& it was a strep infection which we think the nurse caused when she did the

cath.

I have taken care of her for 10 years fulltime just me & her 24/7. She is more

my mother than my aunt, because she raise me. I am really worried it's not a

UTI & she is leaving this world. I pray that the shots work. I am worried now

with her only getting 3 & it should be more. I will talk to the nurse tomorrow.

She has been in Hospice care for a year, and they don't like to do much. I stop

giving her the Nystatin, and I have been using warm salt water with a syringe to

put in her mouth, as well as coating it with plain yogurt. I hope she gets up in

the morning & has an appetite. Since the thrush started she hasn't been hungry

or thirsty. The nurse said maybe her throat is sore, I notice she is swallowing

harder so it could be.

> > Hi Lynn,

> >

> > Thank you for responding it means so much. How many shots of Rocephin did

your mother get when she had UTI's? I can't get her to take in anything since

starting the Nystatin no ice cream at all which is her favorite. I could always

count on that. She loves juices, but I can't get any of those in her either.

Did your mother sleep a lot not eat & drink with the UTI's?

> >

>

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Guest guest

Again, my comments separated by *** below.

>

> Hi Lynn,

>

> I'm so sorry you lost your mother, you have my deepest sympathy, what these

poor souls go through is unimaginable.

***Thank you. Yes, it is unimaginable.***

>

> Thank you again for responding to my questions. So if I understand correctly

your mother got 7 shots each time she had a UTI? She doesn't do well with oral

meds so this would be better he said.

***That is correct. Mom had UTIs quite frequently. Before the d-Mannose, I

could figure on one about every 6 weeks. After d-Mannose, it was stretched out

a bit longer. ***

>

> The thing is with my aunt she never shows symptoms of uti, she sleeps more

with weather changes so I can never tell. I use those uti dipsticks, and they

always seem to turn out okay. Luckily the D-mannose took care of all her UTI,

but one & it was a strep infection which we think the nurse caused when she did

the cath.

***I think the lack of symptoms is fairly common. Thinking of those who lived

in the facility with Mom, most would be checked when either odors were present

or personality changes noted. Personality changes might include either more

confusion, foul moods or extreme fatigue. In Mom's earlier stages, extreme

fatigue was the primary issue noted along with added confusion. As she lost

abilities, those symptoms became lost to one degree or another. I also

questioned whether bacteria could have been introduced with the catheter. The

nurses were extremely careful with cleaning and prepping so I felt reassured.

When Mom was first experiencing the frequent UTIs, a urologist did a workup on

her and diagnosed that her bladder no longer emptied completely, creating a

perfect situation for bacteria to grow and flourish. He felt Mom was not a

candidate for surgery...and I agreed.***

>

> I have taken care of her for 10 years fulltime just me & her 24/7. She is

more my mother than my aunt, because she raise me.

***What a wonderful thing you have done for her! You deserve a real pat on the

back for your caring!***

I am really worried it's not a UTI & she is leaving this world. I pray that the

shots work. I am worried now with her only getting 3 & it should be more. I

will talk to the nurse tomorrow. She has been in Hospice care for a year, and

they don't like to do much.

***I believe some see treatments as extending life. Others see them as

palliative care. It was always a decision with each one whether or not to

treat. To me, treatment was a comfort measure. ***

I stop giving her the Nystatin, and I have been using warm salt water with a

syringe to put in her mouth, as well as coating it with plain yogurt. I hope she

gets up in the morning & has an appetite. Since the thrush started she hasn't

been hungry or thirsty. The nurse said maybe her throat is sore, I notice she

is swallowing harder so it could be.

***It could also be that she is losing the ability to swallow. Is it possible

to have that tested? With my mom, I felt as long as she wanted to eat and took

food, I would do whatever it took to feed her. She moved through the

transitions from regular food to mechanical foods, then to pureed foods and

Boost/Ensure. When even that became a challenge, I moved her to jarred baby

food. She slowly took less of that, too, until she completely stopped taking

food and liquid. At that point, we knew the end was not that far away.

Do you have any support besides Hospice? Family? Friends? If so, perhaps they

can help you observe changes. I would occasionally find that what I perceived

as a sudden change was not seen that way in others who were caring for Mom. A

second opinion from someone who is more than a casual observer can often help.

Best wishes,

Lynn in FL

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Guest guest

Again, my comments separated by *** below.

>

> Hi Lynn,

>

> I'm so sorry you lost your mother, you have my deepest sympathy, what these

poor souls go through is unimaginable.

***Thank you. Yes, it is unimaginable.***

>

> Thank you again for responding to my questions. So if I understand correctly

your mother got 7 shots each time she had a UTI? She doesn't do well with oral

meds so this would be better he said.

***That is correct. Mom had UTIs quite frequently. Before the d-Mannose, I

could figure on one about every 6 weeks. After d-Mannose, it was stretched out

a bit longer. ***

>

> The thing is with my aunt she never shows symptoms of uti, she sleeps more

with weather changes so I can never tell. I use those uti dipsticks, and they

always seem to turn out okay. Luckily the D-mannose took care of all her UTI,

but one & it was a strep infection which we think the nurse caused when she did

the cath.

***I think the lack of symptoms is fairly common. Thinking of those who lived

in the facility with Mom, most would be checked when either odors were present

or personality changes noted. Personality changes might include either more

confusion, foul moods or extreme fatigue. In Mom's earlier stages, extreme

fatigue was the primary issue noted along with added confusion. As she lost

abilities, those symptoms became lost to one degree or another. I also

questioned whether bacteria could have been introduced with the catheter. The

nurses were extremely careful with cleaning and prepping so I felt reassured.

When Mom was first experiencing the frequent UTIs, a urologist did a workup on

her and diagnosed that her bladder no longer emptied completely, creating a

perfect situation for bacteria to grow and flourish. He felt Mom was not a

candidate for surgery...and I agreed.***

>

> I have taken care of her for 10 years fulltime just me & her 24/7. She is

more my mother than my aunt, because she raise me.

***What a wonderful thing you have done for her! You deserve a real pat on the

back for your caring!***

I am really worried it's not a UTI & she is leaving this world. I pray that the

shots work. I am worried now with her only getting 3 & it should be more. I

will talk to the nurse tomorrow. She has been in Hospice care for a year, and

they don't like to do much.

***I believe some see treatments as extending life. Others see them as

palliative care. It was always a decision with each one whether or not to

treat. To me, treatment was a comfort measure. ***

I stop giving her the Nystatin, and I have been using warm salt water with a

syringe to put in her mouth, as well as coating it with plain yogurt. I hope she

gets up in the morning & has an appetite. Since the thrush started she hasn't

been hungry or thirsty. The nurse said maybe her throat is sore, I notice she

is swallowing harder so it could be.

***It could also be that she is losing the ability to swallow. Is it possible

to have that tested? With my mom, I felt as long as she wanted to eat and took

food, I would do whatever it took to feed her. She moved through the

transitions from regular food to mechanical foods, then to pureed foods and

Boost/Ensure. When even that became a challenge, I moved her to jarred baby

food. She slowly took less of that, too, until she completely stopped taking

food and liquid. At that point, we knew the end was not that far away.

Do you have any support besides Hospice? Family? Friends? If so, perhaps they

can help you observe changes. I would occasionally find that what I perceived

as a sudden change was not seen that way in others who were caring for Mom. A

second opinion from someone who is more than a casual observer can often help.

Best wishes,

Lynn in FL

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Guest guest

> >

> > Hi Lynn,

> >

> > I'm so sorry you lost your mother, you have my deepest sympathy, what these

poor souls go through is unimaginable.

>

> ***Thank you. Yes, it is unimaginable.***

> >

> > Thank you again for responding to my questions. So if I understand

correctly your mother got 7 shots each time she had a UTI? She doesn't do well

with oral meds so this would be better he said.

>

> ***That is correct. Mom had UTIs quite frequently. Before the d-Mannose, I

could figure on one about every 6 weeks. After d-Mannose, it was stretched out

a bit longer. ***

> >

> > The thing is with my aunt she never shows symptoms of uti, she sleeps more

with weather changes so I can never tell. I use those uti dipsticks, and they

always seem to turn out okay. Luckily the D-mannose took care of all her UTI,

but one & it was a strep infection which we think the nurse caused when she did

the cath.

>

> ***I think the lack of symptoms is fairly common. Thinking of those who lived

in the facility with Mom, most would be checked when either odors were present

or personality changes noted. Personality changes might include either more

confusion, foul moods or extreme fatigue. In Mom's earlier stages, extreme

fatigue was the primary issue noted along with added confusion. As she lost

abilities, those symptoms became lost to one degree or another. I also

questioned whether bacteria could have been introduced with the catheter. The

nurses were extremely careful with cleaning and prepping so I felt reassured.

When Mom was first experiencing the frequent UTIs, a urologist did a workup on

her and diagnosed that her bladder no longer emptied completely, creating a

perfect situation for bacteria to grow and flourish. He felt Mom was not a

candidate for surgery...and I agreed.***

> >

> > I have taken care of her for 10 years fulltime just me & her 24/7. She is

more my mother than my aunt, because she raise me.

>

> ***What a wonderful thing you have done for her! You deserve a real pat on

the back for your caring!***

>

> I am really worried it's not a UTI & she is leaving this world. I pray that

the shots work. I am worried now with her only getting 3 & it should be more.

I will talk to the nurse tomorrow. She has been in Hospice care for a year, and

they don't like to do much.

>

> ***I believe some see treatments as extending life. Others see them as

palliative care. It was always a decision with each one whether or not to

treat. To me, treatment was a comfort measure. ***

>

> I stop giving her the Nystatin, and I have been using warm salt water with a

syringe to put in her mouth, as well as coating it with plain yogurt. I hope she

gets up in the morning & has an appetite. Since the thrush started she hasn't

been hungry or thirsty. The nurse said maybe her throat is sore, I notice she

is swallowing harder so it could be.

>

> ***It could also be that she is losing the ability to swallow. Is it possible

to have that tested? With my mom, I felt as long as she wanted to eat and took

food, I would do whatever it took to feed her. She moved through the

transitions from regular food to mechanical foods, then to pureed foods and

Boost/Ensure. When even that became a challenge, I moved her to jarred baby

food. She slowly took less of that, too, until she completely stopped taking

food and liquid. At that point, we knew the end was not that far away.

>

> Do you have any support besides Hospice? Family? Friends? If so, perhaps

they can help you observe changes. I would occasionally find that what I

perceived as a sudden change was not seen that way in others who were caring for

Mom. A second opinion from someone who is more than a casual observer can often

help.

>

> Best wishes,

> Lynn in FL

>

No I don't have any other support we have a big family, but they never helped

much. When she first got sick they came a few times, but then just completely

stopped after about the 3rd year. That is when she really needed them, but they

had their own things to do that was more important.

I will see if they can check her swallowing issues, they have from time to time.

She was eating fine the start of the week not as much, but she could still eat.

I really hope that it's a UTI, and this shot will perk her up. How long before

your mom starting feeling better after the first shot? Did she start eating &

drinking more right away? I just have to trust in God that this is the issue &

she will eat & drink again. Please keep her in your prayers! I so very much

appreciate you taking the time to answer my questions. It's hard to be alone in

the world with someone day in & day out with no one that cares enough to listen.

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> >

> > Hi Lynn,

> >

> > I'm so sorry you lost your mother, you have my deepest sympathy, what these

poor souls go through is unimaginable.

>

> ***Thank you. Yes, it is unimaginable.***

> >

> > Thank you again for responding to my questions. So if I understand

correctly your mother got 7 shots each time she had a UTI? She doesn't do well

with oral meds so this would be better he said.

>

> ***That is correct. Mom had UTIs quite frequently. Before the d-Mannose, I

could figure on one about every 6 weeks. After d-Mannose, it was stretched out

a bit longer. ***

> >

> > The thing is with my aunt she never shows symptoms of uti, she sleeps more

with weather changes so I can never tell. I use those uti dipsticks, and they

always seem to turn out okay. Luckily the D-mannose took care of all her UTI,

but one & it was a strep infection which we think the nurse caused when she did

the cath.

>

> ***I think the lack of symptoms is fairly common. Thinking of those who lived

in the facility with Mom, most would be checked when either odors were present

or personality changes noted. Personality changes might include either more

confusion, foul moods or extreme fatigue. In Mom's earlier stages, extreme

fatigue was the primary issue noted along with added confusion. As she lost

abilities, those symptoms became lost to one degree or another. I also

questioned whether bacteria could have been introduced with the catheter. The

nurses were extremely careful with cleaning and prepping so I felt reassured.

When Mom was first experiencing the frequent UTIs, a urologist did a workup on

her and diagnosed that her bladder no longer emptied completely, creating a

perfect situation for bacteria to grow and flourish. He felt Mom was not a

candidate for surgery...and I agreed.***

> >

> > I have taken care of her for 10 years fulltime just me & her 24/7. She is

more my mother than my aunt, because she raise me.

>

> ***What a wonderful thing you have done for her! You deserve a real pat on

the back for your caring!***

>

> I am really worried it's not a UTI & she is leaving this world. I pray that

the shots work. I am worried now with her only getting 3 & it should be more.

I will talk to the nurse tomorrow. She has been in Hospice care for a year, and

they don't like to do much.

>

> ***I believe some see treatments as extending life. Others see them as

palliative care. It was always a decision with each one whether or not to

treat. To me, treatment was a comfort measure. ***

>

> I stop giving her the Nystatin, and I have been using warm salt water with a

syringe to put in her mouth, as well as coating it with plain yogurt. I hope she

gets up in the morning & has an appetite. Since the thrush started she hasn't

been hungry or thirsty. The nurse said maybe her throat is sore, I notice she

is swallowing harder so it could be.

>

> ***It could also be that she is losing the ability to swallow. Is it possible

to have that tested? With my mom, I felt as long as she wanted to eat and took

food, I would do whatever it took to feed her. She moved through the

transitions from regular food to mechanical foods, then to pureed foods and

Boost/Ensure. When even that became a challenge, I moved her to jarred baby

food. She slowly took less of that, too, until she completely stopped taking

food and liquid. At that point, we knew the end was not that far away.

>

> Do you have any support besides Hospice? Family? Friends? If so, perhaps

they can help you observe changes. I would occasionally find that what I

perceived as a sudden change was not seen that way in others who were caring for

Mom. A second opinion from someone who is more than a casual observer can often

help.

>

> Best wishes,

> Lynn in FL

>

No I don't have any other support we have a big family, but they never helped

much. When she first got sick they came a few times, but then just completely

stopped after about the 3rd year. That is when she really needed them, but they

had their own things to do that was more important.

I will see if they can check her swallowing issues, they have from time to time.

She was eating fine the start of the week not as much, but she could still eat.

I really hope that it's a UTI, and this shot will perk her up. How long before

your mom starting feeling better after the first shot? Did she start eating &

drinking more right away? I just have to trust in God that this is the issue &

she will eat & drink again. Please keep her in your prayers! I so very much

appreciate you taking the time to answer my questions. It's hard to be alone in

the world with someone day in & day out with no one that cares enough to listen.

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>He said he thought 3 shots would be enough. I hope the shots don't cause

anything further, she hasn't had any antibiotics in 3 years. I didn't know what

c-diff was til I read your post, always something to worry about.

*** It sounds like you've done a terrific job of caring for your aunt! Yes, we

keep learning about different challenges in life, don't we? For most healthy

people, many of them are not an issue. We do need to remember to keep hands

clean...that's a big factor in the prevention of spreading most germs. ***

She didn't drink or eating anything for breakfast. Hospice was confused & said

they wouldn't be here til tomorrow with the shot, and I of course got really

upset so now they are coming today, as they were supposed too. The Dr. ordered

for her to have a shot starting today.

***Good for you for questioning that. You're a wonderful advocate! "

My aunt acts like she wants something to drink, but she doesn't get the juice up

in the straw far enough. I have been giving her 100cc with the syringe, I got a

bigger one.<

***It may be fatigue that is hindering her drinking. I spooned Mom juice for a

while when she was having difficulties. The syringe is a good idea, too. As

long as she can swallow it with no problems, it sounds like the way to go, at

least while you're waiting for the antibiotic to work. ***

> No I don't have any other support we have a big family, but they never helped

much. When she first got sick they came a few times, but then just completely

stopped after about the 3rd year. That is when she really needed them, but they

had their own things to do that was more important.

*** I think that is fairly common from what I've seen. Long-term diseases are

difficult just because of their duration. Then, there's the aspect of denial or

merely the inability to cope. One of Mom's friends told me when she visited,

she couldn't tell if Mom was even recognizing her. I think at that point, many

stop visiting. I think Mom remembered faces...just didn't know who they were

any longer. She did remember emotions tied to those faces, though, and knew who

she trusted and who was special to her. Sometimes, it was those who cared for

her rather than those who shared her bloodline. The heart knows... I'm sorry

that others do not come by to support you.***

>

> I will see if they can check her swallowing issues, they have from time to

time. She was eating fine the start of the week not as much, but she could

still eat. I really hope that it's a UTI, and this shot will perk her up. How

long before your mom starting feeling better after the first shot? Did she

start eating & drinking more right away?

***Mom would perk up with the first shot. Then, she would not perk up further

until the shots were finished. I don't know why that happened but it was

consistent with each round of shots. Sometimes, I would have to watch her

closely to see any changes after the first day. ***

I just have to trust in God that this is the issue & she will eat & drink again.

Please keep her in your prayers! I so very much appreciate you taking the time

to answer my questions. It's hard to be alone in the world with someone day in

& day out with no one that cares enough to listen.

>

***You are not alone...you have friends here who will lend their support to you.

It may not be the same as being there in person but you know we all understand

this journey and can offer you insight that may be of help. Please know you are

not alone... Hospice should offer counseling that can help, too. I know I met

with the counselor several times and it was good just to sit and talk things out

when the weight of decisions became heavy.

Definitely, prayers will go up for your aunt. And, for you. We are all here

with you.

Best wishes,

Lynn in FL

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> >He said he thought 3 shots would be enough. I hope the shots don't cause

anything further, she hasn't had any antibiotics in 3 years. I didn't know what

c-diff was til I read your post, always something to worry about.

>

> *** It sounds like you've done a terrific job of caring for your aunt! Yes,

we keep learning about different challenges in life, don't we? For most healthy

people, many of them are not an issue. We do need to remember to keep hands

clean...that's a big factor in the prevention of spreading most germs. ***

>

> She didn't drink or eating anything for breakfast. Hospice was confused & said

they wouldn't be here til tomorrow with the shot, and I of course got really

upset so now they are coming today, as they were supposed too. The Dr. ordered

for her to have a shot starting today.

>

> ***Good for you for questioning that. You're a wonderful advocate! "

>

> My aunt acts like she wants something to drink, but she doesn't get the juice

up in the straw far enough. I have been giving her 100cc with the syringe, I got

a bigger one.<

>

> ***It may be fatigue that is hindering her drinking. I spooned Mom juice for

a while when she was having difficulties. The syringe is a good idea, too. As

long as she can swallow it with no problems, it sounds like the way to go, at

least while you're waiting for the antibiotic to work. ***

>

> > No I don't have any other support we have a big family, but they never

helped much. When she first got sick they came a few times, but then just

completely stopped after about the 3rd year. That is when she really needed

them, but they had their own things to do that was more important.

>

> *** I think that is fairly common from what I've seen. Long-term diseases are

difficult just because of their duration. Then, there's the aspect of denial or

merely the inability to cope. One of Mom's friends told me when she visited,

she couldn't tell if Mom was even recognizing her. I think at that point, many

stop visiting. I think Mom remembered faces...just didn't know who they were

any longer. She did remember emotions tied to those faces, though, and knew who

she trusted and who was special to her. Sometimes, it was those who cared for

her rather than those who shared her bloodline. The heart knows... I'm sorry

that others do not come by to support you.***

> >

> > I will see if they can check her swallowing issues, they have from time to

time. She was eating fine the start of the week not as much, but she could

still eat. I really hope that it's a UTI, and this shot will perk her up. How

long before your mom starting feeling better after the first shot? Did she

start eating & drinking more right away?

>

> ***Mom would perk up with the first shot. Then, she would not perk up further

until the shots were finished. I don't know why that happened but it was

consistent with each round of shots. Sometimes, I would have to watch her

closely to see any changes after the first day. ***

>

> I just have to trust in God that this is the issue & she will eat & drink

again. Please keep her in your prayers! I so very much appreciate you taking

the time to answer my questions. It's hard to be alone in the world with

someone day in & day out with no one that cares enough to listen.

> >

>

> ***You are not alone...you have friends here who will lend their support to

you. It may not be the same as being there in person but you know we all

understand this journey and can offer you insight that may be of help. Please

know you are not alone... Hospice should offer counseling that can help, too.

I know I met with the counselor several times and it was good just to sit and

talk things out when the weight of decisions became heavy.

>

> Definitely, prayers will go up for your aunt. And, for you. We are all here

with you.

>

> Best wishes,

> Lynn in FL

>

Family has started to call, because they know she isn't doing well, and I don't

mean to sound mean, but I don't want them here, crying etc. It makes me very

angry. I don't want to soothe their conscience now.

I am a very caring person, but over the years I became hard towards others at

the way they treated me & my aunt. I couldn't believe how family can be some

uncaring. I think I must have been put in our family by mistake. My aunt was

always very compassionate & caring she took care of my grandparents til they

died, she gave up her life. Then shortly after my grandfather died, she got

sick. Life sure is not fair. I promised my aunt for all that she did for them I

would never let her go to a nursing home, and thank God she has never. I always

pray everyday that he keeps me going while I take care of her, because I am all

she has. I honestly wish that I could trade her places, I would

It kills me when she doesn't eat or drink she usually gets up & eats breakfast

really well, and the last 2 mornings nothing. Each day has got worse this week.

I have to believe it's a UTI I notice that her urine smells kind of strong,

usually it doesn't. She drinks so well most of the time, that it doesn't smell

at all. I still get her up to the bathroom, because she always seems to go

better.

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> >He said he thought 3 shots would be enough. I hope the shots don't cause

anything further, she hasn't had any antibiotics in 3 years. I didn't know what

c-diff was til I read your post, always something to worry about.

>

> *** It sounds like you've done a terrific job of caring for your aunt! Yes,

we keep learning about different challenges in life, don't we? For most healthy

people, many of them are not an issue. We do need to remember to keep hands

clean...that's a big factor in the prevention of spreading most germs. ***

>

> She didn't drink or eating anything for breakfast. Hospice was confused & said

they wouldn't be here til tomorrow with the shot, and I of course got really

upset so now they are coming today, as they were supposed too. The Dr. ordered

for her to have a shot starting today.

>

> ***Good for you for questioning that. You're a wonderful advocate! "

>

> My aunt acts like she wants something to drink, but she doesn't get the juice

up in the straw far enough. I have been giving her 100cc with the syringe, I got

a bigger one.<

>

> ***It may be fatigue that is hindering her drinking. I spooned Mom juice for

a while when she was having difficulties. The syringe is a good idea, too. As

long as she can swallow it with no problems, it sounds like the way to go, at

least while you're waiting for the antibiotic to work. ***

>

> > No I don't have any other support we have a big family, but they never

helped much. When she first got sick they came a few times, but then just

completely stopped after about the 3rd year. That is when she really needed

them, but they had their own things to do that was more important.

>

> *** I think that is fairly common from what I've seen. Long-term diseases are

difficult just because of their duration. Then, there's the aspect of denial or

merely the inability to cope. One of Mom's friends told me when she visited,

she couldn't tell if Mom was even recognizing her. I think at that point, many

stop visiting. I think Mom remembered faces...just didn't know who they were

any longer. She did remember emotions tied to those faces, though, and knew who

she trusted and who was special to her. Sometimes, it was those who cared for

her rather than those who shared her bloodline. The heart knows... I'm sorry

that others do not come by to support you.***

> >

> > I will see if they can check her swallowing issues, they have from time to

time. She was eating fine the start of the week not as much, but she could

still eat. I really hope that it's a UTI, and this shot will perk her up. How

long before your mom starting feeling better after the first shot? Did she

start eating & drinking more right away?

>

> ***Mom would perk up with the first shot. Then, she would not perk up further

until the shots were finished. I don't know why that happened but it was

consistent with each round of shots. Sometimes, I would have to watch her

closely to see any changes after the first day. ***

>

> I just have to trust in God that this is the issue & she will eat & drink

again. Please keep her in your prayers! I so very much appreciate you taking

the time to answer my questions. It's hard to be alone in the world with

someone day in & day out with no one that cares enough to listen.

> >

>

> ***You are not alone...you have friends here who will lend their support to

you. It may not be the same as being there in person but you know we all

understand this journey and can offer you insight that may be of help. Please

know you are not alone... Hospice should offer counseling that can help, too.

I know I met with the counselor several times and it was good just to sit and

talk things out when the weight of decisions became heavy.

>

> Definitely, prayers will go up for your aunt. And, for you. We are all here

with you.

>

> Best wishes,

> Lynn in FL

>

Family has started to call, because they know she isn't doing well, and I don't

mean to sound mean, but I don't want them here, crying etc. It makes me very

angry. I don't want to soothe their conscience now.

I am a very caring person, but over the years I became hard towards others at

the way they treated me & my aunt. I couldn't believe how family can be some

uncaring. I think I must have been put in our family by mistake. My aunt was

always very compassionate & caring she took care of my grandparents til they

died, she gave up her life. Then shortly after my grandfather died, she got

sick. Life sure is not fair. I promised my aunt for all that she did for them I

would never let her go to a nursing home, and thank God she has never. I always

pray everyday that he keeps me going while I take care of her, because I am all

she has. I honestly wish that I could trade her places, I would

It kills me when she doesn't eat or drink she usually gets up & eats breakfast

really well, and the last 2 mornings nothing. Each day has got worse this week.

I have to believe it's a UTI I notice that her urine smells kind of strong,

usually it doesn't. She drinks so well most of the time, that it doesn't smell

at all. I still get her up to the bathroom, because she always seems to go

better.

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I just checked her temperature it usually runs about 97.3 it's 96.9 does that

mean anything?

> >He said he thought 3 shots would be enough. I hope the shots don't cause

anything further, she hasn't had any antibiotics in 3 years. I didn't know what

c-diff was til I read your post, always something to worry about.

>

> *** It sounds like you've done a terrific job of caring for your aunt! Yes,

we keep learning about different challenges in life, don't we? For most healthy

people, many of them are not an issue. We do need to remember to keep hands

clean...that's a big factor in the prevention of spreading most germs. ***

>

> She didn't drink or eating anything for breakfast. Hospice was confused & said

they wouldn't be here til tomorrow with the shot, and I of course got really

upset so now they are coming today, as they were supposed too. The Dr. ordered

for her to have a shot starting today.

>

> ***Good for you for questioning that. You're a wonderful advocate! "

>

> My aunt acts like she wants something to drink, but she doesn't get the juice

up in the straw far enough. I have been giving her 100cc with the syringe, I got

a bigger one.<

>

> ***It may be fatigue that is hindering her drinking. I spooned Mom juice for

a while when she was having difficulties. The syringe is a good idea, too. As

long as she can swallow it with no problems, it sounds like the way to go, at

least while you're waiting for the antibiotic to work. ***

>

> > No I don't have any other support we have a big family, but they never

helped much. When she first got sick they came a few times, but then just

completely stopped after about the 3rd year. That is when she really needed

them, but they had their own things to do that was more important.

>

> *** I think that is fairly common from what I've seen. Long-term diseases are

difficult just because of their duration. Then, there's the aspect of denial or

merely the inability to cope. One of Mom's friends told me when she visited,

she couldn't tell if Mom was even recognizing her. I think at that point, many

stop visiting. I think Mom remembered faces...just didn't know who they were

any longer. She did remember emotions tied to those faces, though, and knew who

she trusted and who was special to her. Sometimes, it was those who cared for

her rather than those who shared her bloodline. The heart knows... I'm sorry

that others do not come by to support you.***

> >

> > I will see if they can check her swallowing issues, they have from time to

time. She was eating fine the start of the week not as much, but she could

still eat. I really hope that it's a UTI, and this shot will perk her up. How

long before your mom starting feeling better after the first shot? Did she

start eating & drinking more right away?

>

> ***Mom would perk up with the first shot. Then, she would not perk up further

until the shots were finished. I don't know why that happened but it was

consistent with each round of shots. Sometimes, I would have to watch her

closely to see any changes after the first day. ***

>

> I just have to trust in God that this is the issue & she will eat & drink

again. Please keep her in your prayers! I so very much appreciate you taking

the time to answer my questions. It's hard to be alone in the world with

someone day in & day out with no one that cares enough to listen.

> >

>

> ***You are not alone...you have friends here who will lend their support to

you. It may not be the same as being there in person but you know we all

understand this journey and can offer you insight that may be of help. Please

know you are not alone... Hospice should offer counseling that can help, too.

I know I met with the counselor several times and it was good just to sit and

talk things out when the weight of decisions became heavy.

>

> Definitely, prayers will go up for your aunt. And, for you. We are all here

with you.

>

> Best wishes,

> Lynn in FL

>

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I just checked her temperature it usually runs about 97.3 it's 96.9 does that

mean anything?

> >He said he thought 3 shots would be enough. I hope the shots don't cause

anything further, she hasn't had any antibiotics in 3 years. I didn't know what

c-diff was til I read your post, always something to worry about.

>

> *** It sounds like you've done a terrific job of caring for your aunt! Yes,

we keep learning about different challenges in life, don't we? For most healthy

people, many of them are not an issue. We do need to remember to keep hands

clean...that's a big factor in the prevention of spreading most germs. ***

>

> She didn't drink or eating anything for breakfast. Hospice was confused & said

they wouldn't be here til tomorrow with the shot, and I of course got really

upset so now they are coming today, as they were supposed too. The Dr. ordered

for her to have a shot starting today.

>

> ***Good for you for questioning that. You're a wonderful advocate! "

>

> My aunt acts like she wants something to drink, but she doesn't get the juice

up in the straw far enough. I have been giving her 100cc with the syringe, I got

a bigger one.<

>

> ***It may be fatigue that is hindering her drinking. I spooned Mom juice for

a while when she was having difficulties. The syringe is a good idea, too. As

long as she can swallow it with no problems, it sounds like the way to go, at

least while you're waiting for the antibiotic to work. ***

>

> > No I don't have any other support we have a big family, but they never

helped much. When she first got sick they came a few times, but then just

completely stopped after about the 3rd year. That is when she really needed

them, but they had their own things to do that was more important.

>

> *** I think that is fairly common from what I've seen. Long-term diseases are

difficult just because of their duration. Then, there's the aspect of denial or

merely the inability to cope. One of Mom's friends told me when she visited,

she couldn't tell if Mom was even recognizing her. I think at that point, many

stop visiting. I think Mom remembered faces...just didn't know who they were

any longer. She did remember emotions tied to those faces, though, and knew who

she trusted and who was special to her. Sometimes, it was those who cared for

her rather than those who shared her bloodline. The heart knows... I'm sorry

that others do not come by to support you.***

> >

> > I will see if they can check her swallowing issues, they have from time to

time. She was eating fine the start of the week not as much, but she could

still eat. I really hope that it's a UTI, and this shot will perk her up. How

long before your mom starting feeling better after the first shot? Did she

start eating & drinking more right away?

>

> ***Mom would perk up with the first shot. Then, she would not perk up further

until the shots were finished. I don't know why that happened but it was

consistent with each round of shots. Sometimes, I would have to watch her

closely to see any changes after the first day. ***

>

> I just have to trust in God that this is the issue & she will eat & drink

again. Please keep her in your prayers! I so very much appreciate you taking

the time to answer my questions. It's hard to be alone in the world with

someone day in & day out with no one that cares enough to listen.

> >

>

> ***You are not alone...you have friends here who will lend their support to

you. It may not be the same as being there in person but you know we all

understand this journey and can offer you insight that may be of help. Please

know you are not alone... Hospice should offer counseling that can help, too.

I know I met with the counselor several times and it was good just to sit and

talk things out when the weight of decisions became heavy.

>

> Definitely, prayers will go up for your aunt. And, for you. We are all here

with you.

>

> Best wishes,

> Lynn in FL

>

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Mom's temperature would fluctuate. That's part of the autonomic system issues

with LBD. Mom's temp would normally run less than 97. I was always trying to

convince the staff that if her temp was reading 100, that was no longer low

grade for her. :-)

Just watch the temp and make notes for the Hospice nurse. Once I realized that

Mom was running that low fairly consistently, I no longer worried about it. I

did note several times that she would feel warm to me briefly. After a while,

she would feel cooler. I presumed that was part of the fluctuations, too.

Lynn in FL

>

> I just checked her temperature it usually runs about 97.3 it's 96.9 does that

mean anything?

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Mom's temperature would fluctuate. That's part of the autonomic system issues

with LBD. Mom's temp would normally run less than 97. I was always trying to

convince the staff that if her temp was reading 100, that was no longer low

grade for her. :-)

Just watch the temp and make notes for the Hospice nurse. Once I realized that

Mom was running that low fairly consistently, I no longer worried about it. I

did note several times that she would feel warm to me briefly. After a while,

she would feel cooler. I presumed that was part of the fluctuations, too.

Lynn in FL

>

> I just checked her temperature it usually runs about 97.3 it's 96.9 does that

mean anything?

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