Re: We have been really slow!!!!!

[Guest guest]

Good Morning Dear Donna and ,

It's difficult to keep up with the mail so don't always succeed. I am

having health problems and am not feeling up to par so much lately.

I do love both of you, and think you are tops.

If I can be of any help I will try.

My Don passed April 22, 2010, and now that all the work and driving myself

is over, I think I am collapsing.

The doctor is sending me to specialist to look into several areas, and

perhaps we can find out why I have persistent diarrhea, fever, fatigue and

weight loss.

She did run a test on my blood, and said I do not have a certain type of

blood cancer. It's like Leukemia,

but has a different name. I forgot what it was right now.

Please anyone that wants to share, I will pitch in where I possible can and

help if possible,

Love you all,

Imogene

In a message dated 8/9/2010 12:01:11 A.M. Central Daylight Time,

twomido@... writes:

I do hope the new people who have been wanting to join the group are not

getting discouraged. We have had so few messages lately.

I hope if you want to introduce yourself you will and ask questions.

My Mom died in '02. I took care of her for 4 years. So I have been

through as many more have here, lots of experiences you are having.

I hope you have been reading some previous messages here if you have done

nothing else. And I hope you have seen 's links and other things

she have carefully put together. You will need to go to the Yahoo site for

that. You can click on the bottom of this message and should see

messages.

and I are monitors to the group and we welcome you here.

Hugs.

Donna R

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

[Guest guest]

Hi Kathy, I am sorry about your cancer and treatments. That has got to be

one hard road to travel, and have a sick husband too. I am so terribly

sorry. I'm glad you haven't had any new problems lately.

I hear you about being hard of hearing! If some darling angle hadn't given

me two digital hearing aids I would not have been able to hear my Don at

all. It is doubly hard on the hard of hearing, because it takes so much out

of you when trying to hear. I don't even like company for long because it

wears me out terribly, and my blood pressure goes up sky high. Most don't

really understand.

It is heart breaking to hear about Pete becoming weaker. And here you are

trying to care for him. Oh my dear woman, I feel for you. Been there and

done that! Please let things go that can be left undone.

Save you.

My heart pours out for you.

Love a lot,

Imogene

In a message dated 8/9/2010 8:42:23 P.M. Central Daylight Time,

agerkathryn@... writes:

Sorry that I have been lurking in the wings. After my breast cancer

treatments

I still feel the fatiuge. I took two weeks off caring for Pete. I

probably

should have taken more time but I didn't have the help it takes. He is

getting

weaker and since I am hard of hearing communications are a challenge. I

haven't

had any new problems lately. Maybe people are becoming more aware of LBD

and

finally some information is getting out there. As long as we have LBD

patients

and there caregivers, we will need this sight. Thank you for all

your

dedicated work.

Kathy from MN

[Guest guest]

Imogene,

That is not an unusual story. Caregivers often run out of energy after

caregiving. I am so sorry this has happen to you.

I do hope you are resting and eating healthy stuff and taking your vitamins.

It does take a while to catch back up. And you did such a good job with that

Texas gentleman.

Hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

Re: We have been really slow!!!!!

Good Morning Dear Donna and ,

It's difficult to keep up with the mail so don't always succeed. I am

having health problems and am not feeling up to par so much lately.

I do love both of you, and think you are tops.

If I can be of any help I will try.

My Don passed April 22, 2010, and now that all the work and driving myself

is over, I think I am collapsing.

The doctor is sending me to specialist to look into several areas, and

perhaps we can find out why I have persistent diarrhea, fever, fatigue and

weight loss.

She did run a test on my blood, and said I do not have a certain type of

blood cancer. It's like Leukemia,

but has a different name. I forgot what it was right now.

Please anyone that wants to share, I will pitch in where I possible can and

help if possible,

Love you all,

Imogene

In a message dated 8/9/2010 12:01:11 A.M. Central Daylight Time,

twomido@... writes:

I do hope the new people who have been wanting to join the group are not

getting discouraged. We have had so few messages lately.

I hope if you want to introduce yourself you will and ask questions.

My Mom died in '02. I took care of her for 4 years. So I have been

through as many more have here, lots of experiences you are having.

I hope you have been reading some previous messages here if you have done

nothing else. And I hope you have seen 's links and other things

she have carefully put together. You will need to go to the Yahoo site for

that. You can click on the bottom of this message and should see

messages.

and I are monitors to the group and we welcome you here.

Hugs.

Donna R

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

[Guest guest]

Another tough decision need to make. Mom has been decline since June. Sleepless

at night, agitation during day time. unsteady gate. Nurologist stopp all her

dementia medications (Aricept, Azilect and Namanda) now she's only on 1/4 of

Alprozalam (0.25mg tab) at bed time, plus 25 melatonin, now she sleep better and

more calm during day. We've noticed her motor skill getting worse.  Since 8/2,

after home aid give bath to her, she suddenly can't bear any weight on her left

leg. Bring her to Othpedic today, X-ray found out she has left hip fracture, Dr.

wanted to do hip sugery right away. My Dad and myself wanted to think about it.

Last year she has right hip impact fracture, we didn't let her go through the

suggery, after 10 weeks bedrest, she's recovered. But this time the fracture is

off place, Dr. said impossible to grow together. But at her stage of LBD,

walking already become big challenge without any fracture, wondering how much

she can gain from this

hip suggery. Any one has similar experience can share.

Subject: Re: We have been really slow!!!!!

To: LBDcaregivers

Date: Wednesday, August 11, 2010, 10:05 AM

 

Imogene,

That is not an unusual story. Caregivers often run out of energy after

caregiving. I am so sorry this has happen to you.

I do hope you are resting and eating healthy stuff and taking your vitamins. It

does take a while to catch back up. And you did such a good job with that Texas

gentleman.

Hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away from

LBD in 2002.

Re: We have been really slow!!!!!

Good Morning Dear Donna and ,

It's difficult to keep up with the mail so don't always succeed. I am

having health problems and am not feeling up to par so much lately.

I do love both of you, and think you are tops.

If I can be of any help I will try.

My Don passed April 22, 2010, and now that all the work and driving myself

is over, I think I am collapsing.

The doctor is sending me to specialist to look into several areas, and

perhaps we can find out why I have persistent diarrhea, fever, fatigue and

weight loss.

She did run a test on my blood, and said I do not have a certain type of

blood cancer. It's like Leukemia,

but has a different name. I forgot what it was right now.

Please anyone that wants to share, I will pitch in where I possible can and

help if possible,

Love you all,

Imogene

In a message dated 8/9/2010 12:01:11 A.M. Central Daylight Time,

twomido@... writes:

I do hope the new people who have been wanting to join the group are not

getting discouraged. We have had so few messages lately.

I hope if you want to introduce yourself you will and ask questions.

My Mom died in '02. I took care of her for 4 years. So I have been

through as many more have here, lots of experiences you are having.

I hope you have been reading some previous messages here if you have done

nothing else. And I hope you have seen 's links and other things

she have carefully put together. You will need to go to the Yahoo site for

that. You can click on the bottom of this message and should see

messages.

and I are monitors to the group and we welcome you here.

Hugs.

Donna R

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

[Guest guest]

Hi Donna-

I am a new member, my name is Judy and I live in New York. I think the

issue is more about her health care proxy. Just yesterday, since I am the

'lucky' (lol) health care proxy for my mom deep into lewyland, and she says

in the proxy that when she is considered terminal, which the doc says she

is, you shouldn't treat anything and just make her comfortable, and it says

" even if it would lengthen her life " . If the surgery is painful and anyway

won't " enhance " her life I understand your thoughts and concerns. As long as

she is not in pain.

Have you called Hospice. I am not sure when we should get a consult from

them. Any advice?

I am having an awful issue with my mom now, she thinks people are trying

to kill her; this is a new thing. It is so frightening. Anyone have advice?

Do you think this has anything to do with Capgras. I am a professor so

when I call the aide says it;s Dr. Judy Strauss (since my mother is proud),

then when I come I am good old judy, so I wonder if I should tell the aide not

to say Dr. Judy.....since this can feed into the capgras it seems to me.

Thanks for anyone's and everyone in the group for your sharing of knowledge

and kind support

Judy

In a message dated 8/11/2010 5:40:52 P.M. Eastern Daylight Time,

mfan07470@... writes:

Another tough decision need to make. Mom has been decline since June.

Sleepless at night, agitation during day time. unsteady gate. Nurologist stopp

all her dementia medications (Aricept, Azilect and Namanda) now she's only

on 1/4 of Alprozalam (0.25mg tab) at bed time, plus 25 melatonin, now she

sleep better and more calm during day. We've noticed her motor skill getting

worse. Since 8/2, after home aid give bath to her, she suddenly can't bear

any weight on her left leg. Bring her to Othpedic today, X-ray found out

she has left hip fracture, Dr. wanted to do hip sugery right away. My Dad and

myself wanted to think about it. Last year she has right hip impact

fracture, we didn't let her go through the suggery, after 10 weeks bedrest,

she's

recovered. But this time the fracture is off place, Dr. said impossible to

grow together. But at her stage of LBD, walking already become big

challenge without any fracture, wondering how much she can gain from this

hip suggery. Any one has similar experience can share.

From: Donna Mido <_twomido@..._ (mailto:twomido@...) >

Subject: Re: We have been really slow!!!!!

To: _LBDcaregivers _ (mailto:LBDcaregivers )

Date: Wednesday, August 11, 2010, 10:05 AM

Imogene,

That is not an unusual story. Caregivers often run out of energy after

caregiving. I am so sorry this has happen to you.

I do hope you are resting and eating healthy stuff and taking your

vitamins. It does take a while to catch back up. And you did such a good job

with

that Texas gentleman.

Hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed

away from LBD in 2002.

Re: We have been really slow!!!!!

Good Morning Dear Donna and ,

It's difficult to keep up with the mail so don't always succeed. I am

having health problems and am not feeling up to par so much lately.

I do love both of you, and think you are tops.

If I can be of any help I will try.

My Don passed April 22, 2010, and now that all the work and driving myself

is over, I think I am collapsing.

The doctor is sending me to specialist to look into several areas, and

perhaps we can find out why I have persistent diarrhea, fever, fatigue and

weight loss.

She did run a test on my blood, and said I do not have a certain type of

blood cancer. It's like Leukemia,

but has a different name. I forgot what it was right now.

Please anyone that wants to share, I will pitch in where I possible can

and

help if possible,

Love you all,

Imogene

In a message dated 8/9/2010 12:01:11 A.M. Central Daylight Time,

_twomido@..._ (mailto:twomido@...) writes:

I do hope the new people who have been wanting to join the group are not

getting discouraged. We have had so few messages lately.

I hope if you want to introduce yourself you will and ask questions.

My Mom died in '02. I took care of her for 4 years. So I have been

through as many more have here, lots of experiences you are having.

I hope you have been reading some previous messages here if you have done

nothing else. And I hope you have seen 's links and other things

she have carefully put together. You will need to go to the Yahoo site for

that. You can click on the bottom of this message and should see

messages.

and I are monitors to the group and we welcome you here.

Hugs.

Donna R

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

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Guest guest]

Donna what a sweetheart you are!

Thank you so much. Two doctor appointments this week plus several lab test

and X-rays to find the cause of fever. So today, is lay low day. (Sounds

like I'm saying la la, just grin with me)

The caregiver has agreed to be on duty six hours a day. She has been doing

that and not getting paid for it, unless I pay her, which I try to do, if I

can. Her hours have only been three and a half a day, but she stays over

to help me a lot. She is a blessing from the word go!.

I am a classic example of caregiver burnout, with a spiraling down hill

health problem.

A smile a day keeps the doctor away, and I hope so. I'm trying it. Feels

good.

Love you a lot Donna,

Imogene

In a message dated 8/11/2010 9:05:19 A.M. Central Daylight Time,

twomido@... writes:

Imogene,

That is not an unusual story. Caregivers often run out of energy after

caregiving. I am so sorry this has happen to you.

I do hope you are resting and eating healthy stuff and taking your

vitamins. It does take a while to catch back up. And you did such a good job

with that Texas gentleman.

Hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed

away from LBD in 2002.

[Guest guest]

Dear caregiver, (Sorry I don't know your name)

I do feel for you with an ill Mom who has fractures.

You didn't say your Mom's age, and general health. LBD isn't the only

factor in her health. But, I will say this, My Husband always had problems

coming out of anesthesia. It took a long time to get better, and he never was as

good mentally after the surgeries. I didn't know about good and bad

medicines for LBD patients back then. Look in 's Library on our home

page, and find medicines that are alright for surgery. Many people in their

eighties have hip surgery.

The doctor says your Mom's hip needs to be realigned. I am sure that if it

isn't done she will endure a lot of unnecessary pain. It may progress her

decline, but it is going to come anyway. At least I would allow her to be

pain free during her decline.

I was in a lot of pain with a hair line crack in my knee and it was not out

of alignment. I can just imagine what you Mom must be going through. Being

agitated is a sure sign that she is hurting.

Have you asked her Neurologist and Hospice how much time she may have left?

I am sorry this is so hard on all of you.

Love a lot,

Imogene

My Texas Gentleman Husband, Don, passed away from LBD, April 22, 2010.

Seroquel was a blessing for him and me for a long time.

In a message dated 8/11/2010 4:42:35 P.M. Central Daylight Time,

mfan07470@... writes:

Another tough decision need to make. Mom has been decline since June.

Sleepless at night, agitation during day time. unsteady gate. Nurologist stopp

all her dementia medications (Aricept, Azilect and Namanda) now she's only

on 1/4 of Alprozalam (0.25mg tab) at bed time, plus 25 melatonin, now she

sleep better and more calm during day. We've noticed her motor skill getting

worse. Since 8/2, after home aid give bath to her, she suddenly can't bear

any weight on her left leg. Bring her to Othpedic today, X-ray found out

she has left hip fracture, Dr. wanted to do hip sugery right away. My Dad

and myself wanted to think about it. Last year she has right hip impact

fracture, we didn't let her go through the suggery, after 10 weeks bedrest,

she's recovered. But this time the fracture is off place, Dr. said impossible

to grow together. But at her stage of LBD, walking already become big

challenge without any fracture, wondering how much she can gain from this

hip suggery. Any one has similar experience can share.

[Guest guest]

Dear Judy,

A big warm welcome to this loving and caring site.

Your Mom is suffering with paranoia, along with LBD. That is true of many

LBD patients. No, I wouldn't call

it capgras. In that disease the patient believes the loved one or caretaker

is another person. With the same looks and name. The works.

Example; I was sitting on my husband's lap, giving him a kiss, when he

asked if Imogene in the kitchen knew what we were doing? He asked if it was

alright? And, in general was concerned about doing something wrong.

So, you see I was two people, but not really me at the moment.

Sometimes he would asked if I knew what Imogene was doing? And then, go on

to ask me to ask Imogene to get him some Cran/apple juice. I was standing

right there looking at him.

Sorry about you receiving her " proxy, " and very sorry about your mother's

health

Love a lot,

Imogene

In a message dated 8/11/2010 4:57:40 P.M. Central Daylight Time,

jrstraussb@... writes:

Hi Donna-

I am a new member, my name is Judy and I live in New York. I think the

issue is more about her health care proxy. Just yesterday, since I am the

'lucky' (lol) health care proxy for my mom deep into lewyland, and she

says

in the proxy that when she is considered terminal, which the doc says she

is, you shouldn't treat anything and just make her comfortable, and it

says

" even if it would lengthen her life " . If the surgery is painful and anyway

won't " enhance " her life I understand your thoughts and concerns. As long

as

she is not in pain.

Have you called Hospice. I am not sure when we should get a consult from

them. Any advice?

I am having an awful issue with my mom now, she thinks people are trying

to kill her; this is a new thing. It is so frightening. Anyone have

advice?

Do you think this has anything to do with Capgras. I am a professor so

when I call the aide says it;s Dr. Judy Strauss (since my mother is

proud),

then when I come I am good old judy, so I wonder if I should tell the

aide not

to say Dr. Judy.....since this can feed into the capgras it seems to me.

Thanks for anyone's and everyone in the group for your sharing of

knowledge

and kind support

Judy

[Guest guest]

It is good and I forgot, you have some help. Any help is better than none. Do

eat! The body can't work good stuff if it has no fuel.

Many hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

Re: We have been really slow!!!!!

Donna what a sweetheart you are!

Thank you so much. Two doctor appointments this week plus several lab test

and X-rays to find the cause of fever. So today, is lay low day. (Sounds

like I'm saying la la, just grin with me)

The caregiver has agreed to be on duty six hours a day. She has been doing

that and not getting paid for it, unless I pay her, which I try to do, if I

can. Her hours have only been three and a half a day, but she stays over

to help me a lot. She is a blessing from the word go!.

I am a classic example of caregiver burnout, with a spiraling down hill

health problem.

A smile a day keeps the doctor away, and I hope so. I'm trying it. Feels

good.

Love you a lot Donna,

Imogene

In a message dated 8/11/2010 9:05:19 A.M. Central Daylight Time,

twomido@... writes:

Imogene,

That is not an unusual story. Caregivers often run out of energy after

caregiving. I am so sorry this has happen to you.

I do hope you are resting and eating healthy stuff and taking your

vitamins. It does take a while to catch back up. And you did such a good job

with that Texas gentleman.

Hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed

away from LBD in 2002.

[Guest guest]

Hi,

If you decide to choose surgery, please note that many LBD patients do not do

well on many anesthesia medications. The combination that DOES seem to work

well w/the fewest side effects for our LBD loved ones, is Propofal and Versed.

Check this group's files here

http://health.groups.yahoo.com/group/LBDcaregivers/files/Medications/

for information on " good " and " bad " meds for LBD patients.

Wishing you wisdom as you make your decision,

Sheila in IN

Daughter of Louise, age 87, dx LBD 7/2007

Seroquel 9AM- 25 mg, 3PM- 62.5 mg, 9PM -100 mg.

>

>

>

> Subject: Re: We have been really slow!!!!!

> To: LBDcaregivers

> Date: Wednesday, August 11, 2010, 10:05 AM

>

>

>  

>

>

>

[Guest guest]

Dear Imogene

My mother just had her 80th birthay last week. Found her a new Nurologist which

I found from the Dr list provided. Took mother there on Monday, he

thinks my mom is at late stage of LBD. A week before I took her to Cardiologyst

(she has AF). Discuss with him about hospic care, he refered my mom there.

Hospic nurse visited Tuesday, saying my mom is good candidate for their service,

but the way I'm handlling it is not ready for their service (I'd still bring her

to different specialist for her conditions). Any one has any experience

regarding hospic service for LBD to share

 

Last year she broke her right hip (impact fracture) Dr. wanted operation too, we

declined, after 10 weeks or so rest with some chinese med she recovered. I don't

have a lot of hope for her to walk again this time (her walking has been very

unsteady, and she can't learn to use walker), our goal is to keep her pain free

and somehow can stand and move around a little without a lot of pain. All her

joints became very tense laterly, also right hand can no longer function well,

her speech also become very hard to understand. Didn't expect thing going so

fast. I will take some Family Leave from my work to spend more time with her

 

Thank you again for all your input.

 

- Min (Mom 80, Diagnose AD 12/2008, LBD 4/2009)

Subject: Re: We have been really slow!!!!!

To: LBDcaregivers

Date: Friday, August 13, 2010, 12:06 AM

 

Dear caregiver, (Sorry I don't know your name)

I do feel for you with an ill Mom who has fractures.

You didn't say your Mom's age, and general health. LBD isn't the only

factor in her health. But, I will say this, My Husband always had problems

coming out of anesthesia. It took a long time to get better, and he never was as

good mentally after the surgeries. I didn't know about good and bad

medicines for LBD patients back then. Look in 's Library on our home

page, and find medicines that are alright for surgery. Many people in their

eighties have hip surgery.

The doctor says your Mom's hip needs to be realigned. I am sure that if it

isn't done she will endure a lot of unnecessary pain. It may progress her

decline, but it is going to come anyway. At least I would allow her to be

pain free during her decline.

I was in a lot of pain with a hair line crack in my knee and it was not out

of alignment. I can just imagine what you Mom must be going through. Being

agitated is a sure sign that she is hurting.

Have you asked her Neurologist and Hospice how much time she may have left?

I am sorry this is so hard on all of you.

Love a lot,

Imogene

My Texas Gentleman Husband, Don, passed away from LBD, April 22, 2010.

Seroquel was a blessing for him and me for a long time.

In a message dated 8/11/2010 4:42:35 P.M. Central Daylight Time,

mfan07470@... writes:

Another tough decision need to make. Mom has been decline since June.

Sleepless at night, agitation during day time. unsteady gate. Nurologist stopp

all her dementia medications (Aricept, Azilect and Namanda) now she's only

on 1/4 of Alprozalam (0.25mg tab) at bed time, plus 25 melatonin, now she

sleep better and more calm during day. We've noticed her motor skill getting

worse. Since 8/2, after home aid give bath to her, she suddenly can't bear

any weight on her left leg. Bring her to Othpedic today, X-ray found out

she has left hip fracture, Dr. wanted to do hip sugery right away. My Dad

and myself wanted to think about it. Last year she has right hip impact

fracture, we didn't let her go through the suggery, after 10 weeks bedrest,

she's recovered. But this time the fracture is off place, Dr. said impossible

to grow together. But at her stage of LBD, walking already become big

challenge without any fracture, wondering how much she can gain from this

hip suggery. Any one has similar experience can share.

[Guest guest]

Hi Min,

You have explained a lot, and I do thank you for doing so. It is most

difficult to give advise when we don't know much about the whole situation.

With your Mom being in the end stage, I agree with Sharon, I would by pass

surgery. But, of course you will follow what the doctors

have to say. But, if she isn't in pain sitting or lying down, then why

bother with surgery? I can see where you are coming from. If she has surgery

she'll never walk again anyway. It takes too long to heal from surgery.

And, any trauma affects the patient all the more.

I sure am sorry you have this to handle,

Love a lot,

Imogene

In a message dated 8/13/2010 9:11:47 A.M. Central Daylight Time,

mfan07470@... writes:

Dear Imogene

My mother just had her 80th birthay last week. Found her a new Nurologist

which I found from the Dr list provided. Took mother there on

Monday, he thinks my mom is at late stage of LBD. A week before I took her to

Cardiologyst (she has AF). Discuss with him about hospic care, he refered my

mom there. Hospic nurse visited Tuesday, saying my mom is good candidate

for their service, but the way I'm handlling it is not ready for their

service (I'd still bring her to different specialist for her conditions). Any

one has any experience regarding hospic service for LBD to share

Last year she broke her right hip (impact fracture) Dr. wanted operation

too, we declined, after 10 weeks or so rest with some chinese med she

recovered. I don't have a lot of hope for her to walk again this time (her

walking has been very unsteady, and she can't learn to use walker), our goal is

to keep her pain free and somehow can stand and move around a little without

a lot of pain. All her joints became very tense laterly, also right hand

can no longer function well, her speech also become very hard to understand.

Didn't expect thing going so fast. I will take some Family Leave from my

work to spend more time with her

Thank you again for all your input.

- Min (Mom 80, Diagnose AD 12/2008, LBD 4/2009)

Subject: Re: We have been really slow!!!!!

To: LBDcaregivers

Date: Friday, August 13, 2010, 12:06 AM

Dear caregiver, (Sorry I don't know your name)

I do feel for you with an ill Mom who has fractures.

You didn't say your Mom's age, and general health. LBD isn't the only

factor in her health. But, I will say this, My Husband always had problems

coming out of anesthesia. It took a long time to get better, and he never

was as

good mentally after the surgeries. I didn't know about good and bad

medicines for LBD patients back then. Look in 's Library on our

home

page, and find medicines that are alright for surgery. Many people in

their

eighties have hip surgery.

The doctor says your Mom's hip needs to be realigned. I am sure that if it

isn't done she will endure a lot of unnecessary pain. It may progress her

decline, but it is going to come anyway. At least I would allow her to be

pain free during her decline.

I was in a lot of pain with a hair line crack in my knee and it was not

out

of alignment. I can just imagine what you Mom must be going through. Being

agitated is a sure sign that she is hurting.

Have you asked her Neurologist and Hospice how much time she may have left?

I am sorry this is so hard on all of you.

Love a lot,

Imogene

My Texas Gentleman Husband, Don, passed away from LBD, April 22, 2010.

Seroquel was a blessing for him and me for a long time.

[Guest guest]

Hi Donna,

I am behind on reading messages, but glad to see that you are posting. I was

worried about you because I hadn't seen you posting for a long time.

I hope that your knees are both as good as new and no longer giving you

problems.

Hugs and prayers,

Joan

>

> I do hope the new people who have been wanting to join the group are not

getting discouraged. We have had so few messages lately.

>

> I hope if you want to introduce yourself you will and ask questions.

>

> My Mom died in '02. I took care of her for 4 years. So I have been through

as many more have here, lots of experiences you are having.

>

> I hope you have been reading some previous messages here if you have done

nothing else. And I hope you have seen 's links and other things she

have carefully put together. You will need to go to the Yahoo site for that.

You can click on the bottom of this message and should see messages.

>

> and I are monitors to the group and we welcome you here.

>

> Hugs.

>

> Donna R

>

[Guest guest]

Hi Kathy,

Good to see you posting. Please take care of yourself - and I wish some

peaceful moments for you and Pete.

Hugs and prayers,

Joan

>

> Sorry that I have been lurking in the wings.  After my breast cancer

treatments

> I still feel the fatiuge.  I took two weeks off caring for Pete.  I probably

> should have taken more time but I didn't have the help it takes. He is getting

> weaker and since I am hard of hearing communications are a challenge.  I

haven't

> had any new problems lately.  Maybe people are becoming more aware of LBD and

> finally some information is getting out there.  As long as we have LBD

patients

> and there caregivers, we will need this sight. Thank you for all your

> dedicated work.

> Kathy from MN

>

>

>

>

> ________________________________

>

> To: LBDcaregivers

> Sent: Sun, August 8, 2010 11:55:47 PM

> Subject: We have been really slow!!!!!

>

>  

> I do hope the new people who have been wanting to join the group are not

getting

> discouraged. We have had so few messages lately.

>

>

> I hope if you want to introduce yourself you will and ask questions.

>

> My Mom died in '02. I took care of her for 4 years. So I have been through as

> many more have here, lots of experiences you are having.

>

>

> I hope you have been reading some previous messages here if you have done

> nothing else. And I hope you have seen 's links and other things she

> have carefully put together. You will need to go to the Yahoo site for that.

You

> can click on the bottom of this message and should see messages.

>

>

> and I are monitors to the group and we welcome you here.

>

> Hugs.

>

> Donna R

>

>

>

>

>

>

>

>

[Guest guest]

Hi Imogene,

Please take care of yourself. I pray that the doctors will find what is causing

your symptoms and that it will be something that can be treated and gone soon.

Hugs and prayers,

Joan

>

>

> Good Morning Dear Donna and ,

>

> It's difficult to keep up with the mail so don't always succeed. I am

> having health problems and am not feeling up to par so much lately.

>

> I do love both of you, and think you are tops.

>

> If I can be of any help I will try.

>

> My Don passed April 22, 2010, and now that all the work and driving myself

> is over, I think I am collapsing.

> The doctor is sending me to specialist to look into several areas, and

> perhaps we can find out why I have persistent diarrhea, fever, fatigue and

> weight loss.

>

> She did run a test on my blood, and said I do not have a certain type of

> blood cancer. It's like Leukemia,

> but has a different name. I forgot what it was right now.

>

> Please anyone that wants to share, I will pitch in where I possible can and

> help if possible,

>

> Love you all,

>

> Imogene

>

>

>

>

>

>

>

> In a message dated 8/9/2010 12:01:11 A.M. Central Daylight Time,

> twomido@... writes:

>

> I do hope the new people who have been wanting to join the group are not

> getting discouraged. We have had so few messages lately.

>

> I hope if you want to introduce yourself you will and ask questions.

>

> My Mom died in '02. I took care of her for 4 years. So I have been

> through as many more have here, lots of experiences you are having.

>

> I hope you have been reading some previous messages here if you have done

> nothing else. And I hope you have seen 's links and other things

> she have carefully put together. You will need to go to the Yahoo site for

> that. You can click on the bottom of this message and should see

> messages.

>

> and I are monitors to the group and we welcome you here.

>

> Hugs.

>

> Donna R

>

>

>

> ------------------------------------

>

>

>

>

>

>

[Guest guest]

Min,

My mother has been on hospice for 2 and 1/2 years now. The help we have

received from them has been invaluable. A nurse comes once a week to make an

assessment and brings all meds that are related to Mom's admitting diagnosis

(LBD). They send an aide three times a week to do bath, shampoo and bed change

for Mom. The aide is usually here for a little less than an hour each time.

We can only guess as to why they chose not to accept your mother as a patient.

They may have just seen a long-term issue here and their agency may not be

willing to do that. Yes, hospice is for those patients whose doctors expect

them to only live six months or less, but the hospice agencies can easily get

extensions and continue caring for the patient.

You can always call a different agency. You need a doctor's order to receive

hospice, but you can initiate the process by calling the hospice agency and

having them get the doctor's order.

Except that the nurse told me they've had two other patients on their service

for as long as Mom, I'd say Mom is going for a record here. They're all amazed

she has lived this long. She has been bedbound, for these 2 and 1/2 years,

unable to care for herself in any way, but yet she continues with her mostly

happy hallucinations (thanks to Seroquel), and occasionally knowing who we all

are. Like Jan's husband, Mom had been on a few cruises and often thinks she's

on a cruise now too. Good times.

Let me know if there are other questions I can answer about hospice.

Hoping you get all the help you need,

Sheila in IN

Daughter of Louise, age 87, dx LBD 7/2007

Seroquel 9AM- 25 mg, 3PM- 62.5 mg, 9PM -100 mg.

>

>

>

>

>

>

[Guest guest]

Min,

Sorry I misunderstood your question regarding hospice. Hopefully, you'll be

able to collect all the info you need to make a decision and the family will be

in agreement re surgery or no surgery.

Having hospice shouldn't prevent the patient from seeing other doctors for

conditions that are not the admitting diagnosis. In your mother's case the

admitting dx to hospice, would be LBD, and she should still be able to see an

orthopedist.

Hope you get all the help you need,

Sheila in IN

Daughter of Louise, age 87, dx LBD 7/2007

Seroquel 9AM- 25 mg, 3PM- 62.5 mg, 9PM -100 mg.

> >

> >

> >

> >

> >

> >

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Min,

I am a nurse that has worked hospice and I am confused. DO you want to have your

mom on hospice, but at the present time, she ahs a hip fracture that needs

repair first?

And you are concerned that hospice will take her without the repair but treat

her for pain.

Are you also concerned that she is not a good candidate for the surgery? IS the

surgery being recommended just to give her pain relief? Or is she a rehab

candidate- meaning will she be able to walk again?

Individuals are taken off hospice and placed back on all the time. I think it is

important to really decide what your goals are for your mom and make the

decision.

Hospice is about end of life planning.So if you have concerns about pain and

skin issues discuss them with the hospice nurse and the surgeon. Everyone has an

agenda. And not everyone is looking out for your best interest. Ask lots of

questions then make an educated decision.

But, understand, you can take someone off hospice and put them on again, after

they receive treatment.

Diane Carbo

http://www.aginghomehealthcare.com

http://www.aginghomehealthcare.com/aging_in_place.html

> > >

> > >

> > >

> > >

> > >

> > >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >