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My Mom is 70 yrs old...she hasn't officially been diagnosed with LBD but she

fits the criteria. She has dementia plus tremors, gait issues, balance issues,

periods of confusion, deteriorated executive functions, incontinence, etc.

So she currently has a UTI...she had fever of 103.5...dr prescribed

antibiotic...she is having great difficulty walking, not really talking much,

eyes closed most of time, having trouble with getting food to mouth although she

is eating..wants to lay down most of the time...she is kind of like this without

infection but can walk with assistance, but this deteriorated since she has

UTI..anyone have experience with this and how much will she bounce back from

this? I feel like every time she has an infection she delines a bit more....from

June to now she has had great deterioration. How do you know when the end is

near. I feel like my father and I are walking on eggshells...every day is

something new. I don't know how he is living through this, even though he has

help in the home, its not even enough. The past two days it has taken two of

them to get her from one room to another...the house is not equipped to move her

around in a wheelchair from room to room. Today they say she is walking better,

I didnt see her walk so I don't know what better is...but she has substantial

weakness..she just want to be alone with her eyes closed, even sleeping a bit.

Does this sound like very late stage? She is very incontinent also.

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Hello,

I am only speaking from my own experience with my husband and LBD, as every

LBDer is different in how they will do in battling symptoms. My husband had

several UTIs, two of which were Sepsis. Hospice entered in and left again when

he bounced back each time. It weakened him for a short time and I had a

transport chair at home. 

http://compare.ebay.com/like/230481736924?var=lv & ltyp=AllFixedPriceItemTypes & var\

=sbar It is ideal, because it is light in weight for the caregiver to move

around, and because it fits through all the doors of the house, unlike a large

wheelchair. I have seen them at Walgreens Pharmacy. I bought Jim's at a Medical

Supply Store near us, and you can order them online too. They can also be rented

from Medical Supply Stores.

I would exercise Jim's legs on the bed and when he had his strength back, he

would use the walker.

It is a good sign your mother is eating. Jim's strength picked up when he ate

well. For my husband it was when he stopped eating or drinking altogether and

refused to have any food or drink given to him that he passed. He had Pneumonia

and a UTI and would not take his antibiotic orally. The doctor could not give

him the antibiotic through an IV, because my husband stated in his Health

Directive, he did not want any life saving support and he passed. His eating

stopped gradually. He was eating less and less the weeks before he stopped

eating altogether.

My advice is to enjoy each day the best that you can that you have with your

mother, and not let the timeline get in the way. Every LBD patient is different,

and you could be stressing out for years wondering if it is near the end. Sure,

she will be knocked down a peg or two each time she gets a symptom of some kind,

but this is a fluctuating disease and you never know from day to day, hour to

hour what you are dealing with. From the time that the Parkinsonism started to

the end was 15 years for my husband, 10 years with LBD dementia/hallucinations.

Although, he was dx in 2003 w/LBD, it started in 2000. He died going into the

start of the 11th year with LBD.

What your mother's symptoms sound like to me in your description, was not at the

end for my husband when he was at that point, he lived another 3 to 4 years. He

was 84 when he died. Everyone is different in when and how they make their exit.

________________________________

To: LBDcaregivers

Sent: Thursday, January 5, 2012 10:48 AM

Subject: UTI and LBD

My Mom is 70 yrs old...she hasn't officially been diagnosed with LBD but she

fits the criteria.  She has dementia plus tremors, gait issues, balance issues,

periods of confusion, deteriorated executive functions, incontinence, etc.

So she currently has a UTI...she had fever of 103.5...dr prescribed

antibiotic...she is having great difficulty walking, not really talking much,

eyes closed most of time, having trouble with getting food to mouth although she

is eating..wants to lay down most of the time...she is kind of like this without

infection but can walk with assistance, but this deteriorated since she has

UTI..anyone have experience with this and how much will she bounce back from

this? I feel like every time she has an infection she delines a bit more....from

June to now she has had great deterioration. How do you know when the end is

near. I feel like my father and I are walking on eggshells...every day is

something new. I don't know how he is living through this, even though he has

help in the home, its not even enough. The past two days it has taken two of

them to get her from one room to another...the house is not equipped to move her

around in a wheelchair from room to

room. Today they say she is walking better, I didnt see her walk so I don't

know what better is...but she has substantial weakness..she just want to be

alone with her eyes closed, even sleeping a bit. Does this sound like very late

stage? She is very incontinent also.

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

Welcome to LBDcaregivers. 

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It's hard for me to say but a year ago I was in a similar place with my mother

in law and she bounced back several times. She was weaker but also the LBD does

keep progressing as well. Some antibiotics will. Size confusion etc. has you

father asked for Home Care while she recovers? If not please urge him to do so.

They can come out and start the same day usually. The have a nurse to see how

she is and if anything with her care can be improved

and a cna who will bath her 2x a week and he can request an occupational

therapist and physical therapist to come. All covered by Medicare. They also

have social workers who can make sure he has tapped in to all the resources

available or is aware of them in case of need. The occupational Therapist is

they one who assesses the home environment for safety and mobility and can help

with getting equipment that might be needed and making suggestions for grab bars

and double swing door hinges that can make things easier on those doing the

caregiving. The physical therapist. An help get you mother stronger as she

recovers and they try to get them to where they were before the illness/ uti.

This was a huge help for us and we used it several times in the last two years.

Also you and your father may want to think about what strategies to employ to

avoid uti's (as much as possible). For example, the strategy we had was:

cleanliness and making sure the pericare was done properly every morning or as

needed, taking her to the toilet every two hours to encourage voiding (she was

totally incontinent but this helped keep her out of wet diapers), drinking

plenty of liquids - in her case 5 ten oz glasses a day, cranberry capsules with

every meal and at bedtime, a tablespoon of D- mannose each day (thought to bind

with e coli and prevent it from attaching to the bladder wall), and Estrace

cream applied every other night which helps the vaginal cell walls be more

healthy- the atrophy from too little estrogen in older women resulting in

atrophy is very common - 8 in 10 have severe atrophy. That is recognized as a

causative factor in frequent bladder infections. We did all of this and I think

avoided a lot and we went from a uti every month or to to nearly 10 months

without one. Those 10 months weren't easy as far as LBD but we all have good

memories from good days as well. My Mil did not have another e coli uti again.

It was a psuedamonas infection that was her last one.

There is a protocol in diagnosing and treating uti's. Before starting treatment

get a sterile sample for UA with culture and sensitivity ordered. Start

treatment with an antibiotic as soon as the UA sample is obtained while waiting

for the test result the patient is covered somewhat. It takes three days for

results and those results will indicate which antibiotics will do the work best

- this way the doctor snd patient are sure of what they are dealing with. The

protocol advises to follow up with another UA three days after the last

antibiotic is taken to be sure the infection is clear. This is not easy to do

with LBD and incontinence but not impossible and is best done with a sterile

field and straight cath to get the sample. I took my mil to the local er who

were happy to do this and also give her a shot of rocephin and rx for

antibiotics while we waited for results. Then her doctor would Rx the right

antibiotic and do the follow up.

- Dorothy

from cell phone

> My Mom is 70 yrs old...she hasn't officially been diagnosed with LBD but she

fits the criteria. She has dementia plus tremors, gait issues, balance issues,

periods of confusion, deteriorated executive functions, incontinence, etc.

>

> So she currently has a UTI...she had fever of 103.5...dr prescribed

antibiotic...she is having great difficulty walking, not really talking much,

eyes closed most of time, having trouble with getting food to mouth although she

is eating..wants to lay down most of the time...she is kind of like this without

infection but can walk with assistance, but this deteriorated since she has

UTI..anyone have experience with this and how much will she bounce back from

this? I feel like every time she has an infection she delines a bit more....from

June to now she has had great deterioration. How do you know when the end is

near. I feel like my father and I are walking on eggshells...every day is

something new. I don't know how he is living through this, even though he has

help in the home, its not even enough. The past two days it has taken two of

them to get her from one room to another...the house is not equipped to move her

around in a wheelchair from room to room. Today they say she! is walking better,

I didnt see her walk so I don't know what better is...but she has substantial

weakness..she just want to be alone with her eyes closed, even sleeping a bit.

Does this sound like very late stage? She is very incontinent also.

>

>

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Just want to say that getting the OT, PT, Medicare help and other things

mentioned for home care help are a little different for Kaiser Patients and you

should contact Kaiser for help. I know there are many Kaiser Patients here and

things work differently. Kaiser has its own system. Kaiser was great with my

husband and I will never have a bad thing to say about them, but you have to

contact them if Kaiser is your health provider.

It used to confuse me to read some of the things people said they could get, but

it was because they were not with Kaiser.

Kaiser has its own way of doing things, which is just as good, but you need to

contact them to get the help if you are with Kaiser.

 

________________________________

To: " LBDcaregivers " <LBDcaregivers >

Sent: Friday, January 6, 2012 12:47 PM

Subject: Re: UTI and LBD

It's hard for me to say but a year ago I was in a similar place with my mother

in law and she bounced back several times.  She was weaker but also the LBD does

keep progressing as well.  Some antibiotics will. Size confusion etc.  has you

father asked for Home Care while she recovers?  If not please urge him to do

so.  They can come out and start the same day usually.  The have a nurse to see

how she is and if anything with her care can be improved

and a cna who will bath her 2x a week and he can request an occupational

therapist and physical therapist to come.  All covered by Medicare.  They also

have social workers who can make sure he has tapped in to all the resources

available or is aware of them in case of need.  The occupational Therapist is

they one who assesses the home environment for safety and mobility and can help

with getting equipment that might be needed and making suggestions for grab bars

and double swing door hinges that can make things easier on those doing the

caregiving.  The physical therapist. An help get you mother stronger as she

recovers and they try to get them to where they were before the illness/ uti. 

This was a huge help for us and we used it several times in the last two years. 

Also you and your father may want to think about what strategies to employ to

avoid uti's (as much as possible).  For example, the strategy we had was:

cleanliness and making sure the pericare was done properly every morning or as

needed, taking her to the toilet every two hours to encourage voiding (she was

totally incontinent but this helped keep her out of wet diapers), drinking

plenty of liquids - in her case 5 ten oz glasses a day, cranberry capsules with

every meal and at bedtime, a tablespoon of D- mannose each day (thought to bind

with e coli and prevent it from attaching to the bladder wall), and Estrace

cream applied every other night which helps the vaginal cell walls be more

healthy- the atrophy from too little estrogen in older women resulting in

atrophy is very common - 8 in 10 have severe atrophy.  That is recognized as a

causative factor in frequent bladder infections.  We did all of this and I think

avoided a lot and we went from a

uti every month or to to nearly 10 months without one.  Those 10 months weren't

easy as far as LBD but we all have good memories from good days as well.  My Mil

did not have another e coli uti again.  It was a psuedamonas infection that was

her last one.

There is a protocol in diagnosing and treating uti's.  Before starting treatment

get a sterile sample for UA with culture and sensitivity ordered.  Start

treatment with an antibiotic as soon as the UA sample is obtained while waiting

for the test result the patient is covered somewhat.  It takes three days for

results and those results will indicate which antibiotics will do the work best

- this way the doctor snd patient are sure of what they are dealing with.  The

protocol advises to follow up with another UA three days after the last

antibiotic is taken to be sure the infection is clear.  This is not easy to do

with LBD and incontinence but not impossible and is best done with a sterile

field and straight cath to get the sample.  I took my mil to the local er who

were happy to do this and also give her a shot of rocephin and rx for

antibiotics while we waited for results.  Then her doctor would Rx the right

antibiotic and do the follow up.

- Dorothy

from cell phone

> My Mom is 70 yrs old...she hasn't officially been diagnosed with LBD but she

fits the criteria. She has dementia plus tremors, gait issues, balance issues,

periods of confusion, deteriorated executive functions, incontinence, etc.

>

> So she currently has a UTI...she had fever of 103.5...dr prescribed

antibiotic...she is having great difficulty walking, not really talking much,

eyes closed most of time, having trouble with getting food to mouth although she

is eating..wants to lay down most of the time...she is kind of like this without

infection but can walk with assistance, but this deteriorated since she has

UTI..anyone have experience with this and how much will she bounce back from

this? I feel like every time she has an infection she delines a bit more....from

June to now she has had great deterioration. How do you know when the end is

near. I feel like my father and I are walking on eggshells...every day is

something new. I don't know how he is living through this, even though he has

help in the home, its not even enough. The past two days it has taken two of

them to get her from one room to another...the house is not equipped to move her

around in a wheelchair from room to

room. Today they say she! is walking better, I didnt see her walk so I don't

know what better is...but she has substantial weakness..she just want to be

alone with her eyes closed, even sleeping a bit. Does this sound like very late

stage? She is very incontinent also.

>

>

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I did not know Kaiser was exempt from these basic medicare things. My friend

who passed from ALS had Kaiser and had the be benefit of these services at

different times but I do recall having to press her doctor for the help. I hope

there are ways to get help with some home visits and evaluation of what can make

the home safer and work better for all. If Kaiser will not come through there

are many resources online that I found helpful for various issues. There may be

other agencies that could help depending where they live. It would be nice to

get something in place before someone gets hurt

- Dorothy

from cell phone

> Just want to say that getting the OT, PT, Medicare help and other things

mentioned for home care help are a little different for Kaiser Patients and you

should contact Kaiser for help. I know there are many Kaiser Patients here and

things work differently. Kaiser has its own system. Kaiser was great with my

husband and I will never have a bad thing to say about them, but you have to

contact them if Kaiser is your health provider.

> It used to confuse me to read some of the things people said they could get,

but it was because they were not with Kaiser.

> Kaiser has its own way of doing things, which is just as good, but you need to

contact them to get the help if you are with Kaiser.

>

>

> ________________________________

>

> To: " LBDcaregivers " <LBDcaregivers >

> Sent: Friday, January 6, 2012 12:47 PM

> Subject: Re: UTI and LBD

>

> It's hard for me to say but a year ago I was in a similar place with my mother

in law and she bounced back several times. She was weaker but also the LBD does

keep progressing as well. Some antibiotics will. Size confusion etc. has you

father asked for Home Care while she recovers? If not please urge him to do so.

They can come out and start the same day usually. The have a nurse to see how

she is and if anything with her care can be improved

> and a cna who will bath her 2x a week and he can request an occupational

therapist and physical therapist to come. All covered by Medicare. They also

have social workers who can make sure he has tapped in to all the resources

available or is aware of them in case of need. The occupational Therapist is

they one who assesses the home environment for safety and mobility and can help

with getting equipment that might be needed and making suggestions for grab bars

and double swing door hinges that can make things easier on those doing the

caregiving. The physical therapist. An help get you mother stronger as she

recovers and they try to get them to where they were before the illness/ uti.

This was a huge help for us and we used it several times in the last two years.

>

> Also you and your father may want to think about what strategies to employ to

avoid uti's (as much as possible). For example, the strategy we had was:

cleanliness and making sure the pericare was done properly every morning or as

needed, taking her to the toilet every two hours to encourage voiding (she was

totally incontinent but this helped keep her out of wet diapers), drinking

plenty of liquids - in her case 5 ten oz glasses a day, cranberry capsules with

every meal and at bedtime, a tablespoon of D- mannose each day (thought to bind

with e coli and prevent it from attaching to the bladder wall), and Estrace

cream applied every other night which helps the vaginal cell walls be more

healthy- the atrophy from too little estrogen in older women resulting in

atrophy is very common - 8 in 10 have severe atrophy. That is recognized as a

causative factor in frequent bladder infections. We did all of this and I think

avoided a lot and we went from a

> uti every month or to to nearly 10 months without one. Those 10 months

weren't easy as far as LBD but we all have good memories from good days as well.

My Mil did not have another e coli uti again. It was a psuedamonas infection

that was her last one.

> There is a protocol in diagnosing and treating uti's. Before starting

treatment get a sterile sample for UA with culture and sensitivity ordered.

Start treatment with an antibiotic as soon as the UA sample is obtained while

waiting for the test result the patient is covered somewhat. It takes three

days for results and those results will indicate which antibiotics will do the

work best - this way the doctor snd patient are sure of what they are dealing

with. The protocol advises to follow up with another UA three days after the

last antibiotic is taken to be sure the infection is clear. This is not easy to

do with LBD and incontinence but not impossible and is best done with a sterile

field and straight cath to get the sample. I took my mil to the local er who

were happy to do this and also give her a shot of rocephin and rx for

antibiotics while we waited for results. Then her doctor would Rx the right

antibiotic and do the follow up.

>

> - Dorothy

> from cell phone

>

>

>

> > My Mom is 70 yrs old...she hasn't officially been diagnosed with LBD but she

fits the criteria. She has dementia plus tremors, gait issues, balance issues,

periods of confusion, deteriorated executive functions, incontinence, etc.

> >

> > So she currently has a UTI...she had fever of 103.5...dr prescribed

antibiotic...she is having great difficulty walking, not really talking much,

eyes closed most of time, having trouble with getting food to mouth although she

is eating..wants to lay down most of the time...she is kind of like this without

infection but can walk with assistance, but this deteriorated since she has

UTI..anyone have experience with this and how much will she bounce back from

this? I feel like every time she has an infection she delines a bit more....from

June to now she has had great deterioration. How do you know when the end is

near. I feel like my father and I are walking on eggshells...every day is

something new. I don't know how he is living through this, even though he has

help in the home, its not even enough. The past two days it has taken two of

them to get her from one room to another...the house is not equipped to move her

around in a wheelchair from room to

> room. Today they say she! is walking better, I didnt see her walk so I don't

know what better is...but she has substantial weakness..she just want to be

alone with her eyes closed, even sleeping a bit. Does this sound like very late

stage? She is very incontinent also.

> >

> >

>

>

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Ps thanks Janet I forgot Kaiser has its own world :)

- Dorothy

from cell phone

> Just want to say that getting the OT, PT, Medicare help and other things

mentioned for home care help are a little different for Kaiser Patients and you

should contact Kaiser for help. I know there are many Kaiser Patients here and

things work differently. Kaiser has its own system. Kaiser was great with my

husband and I will never have a bad thing to say about them, but you have to

contact them if Kaiser is your health provider.

> It used to confuse me to read some of the things people said they could get,

but it was because they were not with Kaiser.

> Kaiser has its own way of doing things, which is just as good, but you need to

contact them to get the help if you are with Kaiser.

>

>

> ________________________________

>

> To: " LBDcaregivers " <LBDcaregivers >

> Sent: Friday, January 6, 2012 12:47 PM

> Subject: Re: UTI and LBD

>

> It's hard for me to say but a year ago I was in a similar place with my mother

in law and she bounced back several times. She was weaker but also the LBD does

keep progressing as well. Some antibiotics will. Size confusion etc. has you

father asked for Home Care while she recovers? If not please urge him to do so.

They can come out and start the same day usually. The have a nurse to see how

she is and if anything with her care can be improved

> and a cna who will bath her 2x a week and he can request an occupational

therapist and physical therapist to come. All covered by Medicare. They also

have social workers who can make sure he has tapped in to all the resources

available or is aware of them in case of need. The occupational Therapist is

they one who assesses the home environment for safety and mobility and can help

with getting equipment that might be needed and making suggestions for grab bars

and double swing door hinges that can make things easier on those doing the

caregiving. The physical therapist. An help get you mother stronger as she

recovers and they try to get them to where they were before the illness/ uti.

This was a huge help for us and we used it several times in the last two years.

>

> Also you and your father may want to think about what strategies to employ to

avoid uti's (as much as possible). For example, the strategy we had was:

cleanliness and making sure the pericare was done properly every morning or as

needed, taking her to the toilet every two hours to encourage voiding (she was

totally incontinent but this helped keep her out of wet diapers), drinking

plenty of liquids - in her case 5 ten oz glasses a day, cranberry capsules with

every meal and at bedtime, a tablespoon of D- mannose each day (thought to bind

with e coli and prevent it from attaching to the bladder wall), and Estrace

cream applied every other night which helps the vaginal cell walls be more

healthy- the atrophy from too little estrogen in older women resulting in

atrophy is very common - 8 in 10 have severe atrophy. That is recognized as a

causative factor in frequent bladder infections. We did all of this and I think

avoided a lot and we went from a

> uti every month or to to nearly 10 months without one. Those 10 months

weren't easy as far as LBD but we all have good memories from good days as well.

My Mil did not have another e coli uti again. It was a psuedamonas infection

that was her last one.

> There is a protocol in diagnosing and treating uti's. Before starting

treatment get a sterile sample for UA with culture and sensitivity ordered.

Start treatment with an antibiotic as soon as the UA sample is obtained while

waiting for the test result the patient is covered somewhat. It takes three

days for results and those results will indicate which antibiotics will do the

work best - this way the doctor snd patient are sure of what they are dealing

with. The protocol advises to follow up with another UA three days after the

last antibiotic is taken to be sure the infection is clear. This is not easy to

do with LBD and incontinence but not impossible and is best done with a sterile

field and straight cath to get the sample. I took my mil to the local er who

were happy to do this and also give her a shot of rocephin and rx for

antibiotics while we waited for results. Then her doctor would Rx the right

antibiotic and do the follow up.

>

> - Dorothy

> from cell phone

>

>

>

> > My Mom is 70 yrs old...she hasn't officially been diagnosed with LBD but she

fits the criteria. She has dementia plus tremors, gait issues, balance issues,

periods of confusion, deteriorated executive functions, incontinence, etc.

> >

> > So she currently has a UTI...she had fever of 103.5...dr prescribed

antibiotic...she is having great difficulty walking, not really talking much,

eyes closed most of time, having trouble with getting food to mouth although she

is eating..wants to lay down most of the time...she is kind of like this without

infection but can walk with assistance, but this deteriorated since she has

UTI..anyone have experience with this and how much will she bounce back from

this? I feel like every time she has an infection she delines a bit more....from

June to now she has had great deterioration. How do you know when the end is

near. I feel like my father and I are walking on eggshells...every day is

something new. I don't know how he is living through this, even though he has

help in the home, its not even enough. The past two days it has taken two of

them to get her from one room to another...the house is not equipped to move her

around in a wheelchair from room to

> room. Today they say she! is walking better, I didnt see her walk so I don't

know what better is...but she has substantial weakness..she just want to be

alone with her eyes closed, even sleeping a bit. Does this sound like very late

stage? She is very incontinent also.

> >

> >

>

>

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Your mom is too young, I'm sorry.

I suppose your mom could have a PD with dementia, or whatever the term is. I

would want to get a better diagnosis. If nothing else, makes web searches

easier.

UTI is a great issue for all seniors from what I understand. It screws them up

even if they don't have a dementia. Get it cleared and then panic about the next

thing that comes along.

It sounds like your father needs more help or maybe you need to be looking into

a home.

I think UTI you can sort out. But you also need to sort out the diagnosis to

understand what you and your father are dealing with. And then to proceed from

there.

Best, Olga

>

> My Mom is 70 yrs old...she hasn't officially been diagnosed with LBD but she

fits the criteria. She has dementia plus tremors, gait issues, balance issues,

periods of confusion, deteriorated executive functions, incontinence, etc.

>

> So she currently has a UTI...she had fever of 103.5...dr prescribed

antibiotic...she is having great difficulty walking, not really talking much,

eyes closed most of time, having trouble with getting food to mouth although she

is eating..wants to lay down most of the time...she is kind of like this without

infection but can walk with assistance, but this deteriorated since she has

UTI..anyone have experience with this and how much will she bounce back from

this? I feel like every time she has an infection she delines a bit more....from

June to now she has had great deterioration. How do you know when the end is

near. I feel like my father and I are walking on eggshells...every day is

something new. I don't know how he is living through this, even though he has

help in the home, its not even enough. The past two days it has taken two of

them to get her from one room to another...the house is not equipped to move her

around in a wheelchair from room to room. Today they say she is walking better,

I didnt see her walk so I don't know what better is...but she has substantial

weakness..she just want to be alone with her eyes closed, even sleeping a bit.

Does this sound like very late stage? She is very incontinent also.

>

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Share on other sites

Kaiser is not exempt from basic medicare things, but they have a routine of when

they will provide certain things. Yes, there are resources that are helpful

outside of Kaiser too, as you say. Just didn't want to confuse the Kaiser folks

earlier, because for several years I was confused with the kind of help others

said they got. I found I could get it too, but in different ways. Kaiser was a

great help for my husband and me and they will give you a lot of resource

material on where the help you are looking for can be found if Kaiser doesn't

provide it. Kaiser is another alternative in health, you just have to learn

their system.

________________________________

To: " LBDcaregivers " <LBDcaregivers >

Sent: Saturday, January 7, 2012 2:02 PM

Subject: Re: UTI and LBD

I did not know Kaiser was exempt from these basic medicare things.  My friend

who passed from ALS had Kaiser and had the be benefit of these services at

different times but I do recall having to press her doctor for the help.  I hope

there are ways to get help with some home visits and evaluation of what can make

the home safer and work better for all.  If Kaiser will not come through there

are many resources online that I found helpful for various issues.  There may be

other agencies that could help depending where they live.  It would be nice to

get something in place before someone gets hurt

- Dorothy

from cell phone

> Just want to say that getting the OT, PT, Medicare help and other things

mentioned for home care help are a little different for Kaiser Patients and you

should contact Kaiser for help. I know there are many Kaiser Patients here and

things work differently. Kaiser has its own system. Kaiser was great with my

husband and I will never have a bad thing to say about them, but you have to

contact them if Kaiser is your health provider.

> It used to confuse me to read some of the things people said they could get,

but it was because they were not with Kaiser.

> Kaiser has its own way of doing things, which is just as good, but you need to

contact them to get the help if you are with Kaiser.

>

> ________________________________

>

> To: " LBDcaregivers " <LBDcaregivers >

> Sent: Friday, January 6, 2012 12:47 PM

> Subject: Re: UTI and LBD

>

> It's hard for me to say but a year ago I was in a similar place with my mother

in law and she bounced back several times.  She was weaker but also the LBD does

keep progressing as well.  Some antibiotics will. Size confusion etc.  has you

father asked for Home Care while she recovers?  If not please urge him to do

so.  They can come out and start the same day usually.  The have a nurse to see

how she is and if anything with her care can be improved

> and a cna who will bath her 2x a week and he can request an occupational

therapist and physical therapist to come.  All covered by Medicare.  They also

have social workers who can make sure he has tapped in to all the resources

available or is aware of them in case of need.  The occupational Therapist is

they one who assesses the home environment for safety and mobility and can help

with getting equipment that might be needed and making suggestions for grab bars

and double swing door hinges that can make things easier on those doing the

caregiving.  The physical therapist. An help get you mother stronger as she

recovers and they try to get them to where they were before the illness/ uti. 

This was a huge help for us and we used it several times in the last two years. 

>

> Also you and your father may want to think about what strategies to employ to

avoid uti's (as much as possible).  For example, the strategy we had was:

cleanliness and making sure the pericare was done properly every morning or as

needed, taking her to the toilet every two hours to encourage voiding (she was

totally incontinent but this helped keep her out of wet diapers), drinking

plenty of liquids - in her case 5 ten oz glasses a day, cranberry capsules with

every meal and at bedtime, a tablespoon of D- mannose each day (thought to bind

with e coli and prevent it from attaching to the bladder wall), and Estrace

cream applied every other night which helps the vaginal cell walls be more

healthy- the atrophy from too little estrogen in older women resulting in

atrophy is very common - 8 in 10 have severe atrophy.  That is recognized as a

causative factor in frequent bladder infections.  We did all of this and I think

avoided a lot and we went from a

> uti every month or to to nearly 10 months without one.  Those 10 months

weren't easy as far as LBD but we all have good memories from good days as

well.  My Mil did not have another e coli uti again.  It was a psuedamonas

infection that was her last one.

> There is a protocol in diagnosing and treating uti's.  Before starting

treatment get a sterile sample for UA with culture and sensitivity ordered. 

Start treatment with an antibiotic as soon as the UA sample is obtained while

waiting for the test result the patient is covered somewhat.  It takes three

days for results and those results will indicate which antibiotics will do the

work best - this way the doctor snd patient are sure of what they are dealing

with.  The protocol advises to follow up with another UA three days after the

last antibiotic is taken to be sure the infection is clear.  This is not easy to

do with LBD and incontinence but not impossible and is best done with a sterile

field and straight cath to get the sample.  I took my mil to the local er who

were happy to do this and also give her a shot of rocephin and rx for

antibiotics while we waited for results.  Then her doctor would Rx the right

antibiotic and do the follow up.

>

> - Dorothy

> from cell phone

>

>

>

> > My Mom is 70 yrs old...she hasn't officially been diagnosed with LBD but she

fits the criteria. She has dementia plus tremors, gait issues, balance issues,

periods of confusion, deteriorated executive functions, incontinence, etc.

> >

> > So she currently has a UTI...she had fever of 103.5...dr prescribed

antibiotic...she is having great difficulty walking, not really talking much,

eyes closed most of time, having trouble with getting food to mouth although she

is eating..wants to lay down most of the time...she is kind of like this without

infection but can walk with assistance, but this deteriorated since she has

UTI..anyone have experience with this and how much will she bounce back from

this? I feel like every time she has an infection she delines a bit more....from

June to now she has had great deterioration. How do you know when the end is

near. I feel like my father and I are walking on eggshells...every day is

something new. I don't know how he is living through this, even though he has

help in the home, its not even enough. The past two days it has taken two of

them to get her from one room to another...the house is not equipped to move her

around in a wheelchair from room to

> room. Today they say she! is walking better, I didnt see her walk so I don't

know what better is...but she has substantial weakness..she just want to be

alone with her eyes closed, even sleeping a bit. Does this sound like very late

stage? She is very incontinent also.

> >

> >

>

>

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I'm going to ask a very tough question, but one you need to consider. Do

you want her to bounce back? Would she want to bounce back? Or is this a

chance for you all to let go?

If she is sustaining a fever over 103 and you want her to bounce back, my

opinion is that she belongs in hospital. You also need to watch her care

there closely and be cautious about meds. If she has had several

occurrences of things like this, it is time for " the talk " with her

doctor. If she were in a care center, her doc would probably have already

started the conversation.

Please, if you haven't already, talk with her care team and make some tough

decisions and a care plan you can accept.

Best wishes.

Kathy

Kate Knapp

> **

>

>

> My Mom is 70 yrs old...she hasn't officially been diagnosed with LBD but

> she fits the criteria. She has dementia plus tremors, gait issues, balance

> issues, periods of confusion, deteriorated executive functions,

> incontinence, etc.

>

> So she currently has a UTI...she had fever of 103.5...dr prescribed

> antibiotic...she is having great difficulty walking, not really talking

> much, eyes closed most of time, having trouble with getting food to mouth

> although she is eating..wants to lay down most of the time...she is kind of

> like this without infection but can walk with assistance, but this

> deteriorated since she has UTI..anyone have experience with this and how

> much will she bounce back from this? I feel like every time she has an

> infection she delines a bit more....from June to now she has had great

> deterioration. How do you know when the end is near. I feel like my father

> and I are walking on eggshells...every day is something new. I don't know

> how he is living through this, even though he has help in the home, its not

> even enough. The past two days it has taken two of them to get her from one

> room to another...the house is not equipped to move her around in a

> wheelchair from room to room. Today they say she is walking better, I didnt

> see her walk so I don't know what better is...but she has substantial

> weakness..she just want to be alone with her eyes closed, even sleeping a

> bit. Does this sound like very late stage? She is very incontinent also.

>

>

>

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