Re: June /My Husband's Condition

October 26, 2006

June-

Trust your heart. I think it is a good idea that you

asked Hospice to get involved also. Please remind

us how long your husband has struggled with LBD.

Our hearts go out to you-

Sandie and

Des Moines, IA

(had the pouring rain through the night, high of 45

today)

-- My Husband's Condition

Yesterday afternoon when I went to the NH, I found my

husband in very bad shape. He had not been good since

Sunday, the last time he ate anything. I had fed him

most of his dinner. Monday, he did not eat breakfast,

lunch, and his head was hanging forward so much, I

couldn't get any dinner in him. It just came back out.

He did not eat breakfast Tues, and they didn't think

he ate lunch either. Very unresponsive to everything

but pain, fever of 100+ (axillary and his normal temp

is 97.6), rapid somewhat irregular heartbeat. They

had taken a chest x-ray and done a UA and CBC on

Tuesday, all of which they said were negative. They,

in essence, said he was " code, " and led me to believe

he was in the last stages. I really believe he would

have been had I not elected to take him to the ER. I

did check him for mottling and found none. They also

told me he had lost 10# since his hospital stay from

Oct. 5-9. He was good the first day back from the

hosp. but had deteriorated daily. I made the decision

to call the ambulance and have him taken to the

hospital. I tried to get a direct admittance rather

that the ER situation, but since the NH said all his

tests were negative, we had to go to ER. Another five

hours spent there, at which time they retested urine,

blood, chest x-ray, EKG. He was really out of it,

again severely dehydrated, and unresponsive to

anything but pain when they moved him or jabbed him

for the blood tests. When they finally got all the

results, they said he had a massive infection

somewhere, probably UTI, with possible sepsis; wbc was

26,000; 10,000 is high; and severe dehydration.

Started antibiotic IV as well as rehydration. His bed

sore is worse again. This is just three weeks

tomorrow from when he went to the hospital before with

UTI, asp. pneu. and severe dehydration.

This afternoon, he was better; was talking garbled,

but awake for awhile. They gave him a breathing

treatment, put an air mattress on the bed, took

several more vials of blood for culture testing, and

he went to sleep. I had a couple of things to do so

left about 4:15 and then came back at supper time. He

was asleep but was able to wake up to eat and ate

fairly well. The food is much, much better than the

NH. Turkey/dressing/gravy/green beans/roll and

butter/tapioca pudding/juice and iced tea. Really

made me hungry! He had a little difficulty in

swallowing but did when I gave him sips of liquid. He

can't always remember how to suck on the straw.

Here's my predicament. This is the second time he has

been revived at the hospital. Both of these times, I

know he wouldn't have made it if not for that. I do

not want to take him back to the NH, because I think

this will happen again. I know it's just a matter of

time before the antibiotics no longer will work, too.

I'm not sure the NH is doing what they can, possibly

because they know his case is eventually hopeless, so

why worry! Am I paranoid or what? I talked to

Hospice, and they will take him to their Hospice

House, but it will be for " end " care. They will not

resuscitate nor give him antibiotics, but will only

make him comfortable. In other words, if he has

another infection, he will be allowed to " go " with as

much comfort as they can. They will keep him as long

as need be.

The only other NHs in town that would be better are

private pay; one will take Medicare/Medicaid, but they

have a long waiting list. The rest of the NHs, from

what I have heard from other people, have the same

problems that this one does; some people say they're

okay; others say they wouldn't take anyone there. I

don't think it would be in his best interest to move

him to another facility that may not be any better

than where he is now. Any advice or comments anyone

can give would be appreciated. I really don't know

what to do, and I know they will only keep him at the

hospital until he stabilizes.

After this happened so fast, I thought I had better

visit the funeral home, who I had talked with some

before, and make some arrangements should this happen

again or he not improve. Several years ago, we had

prepurchased caskets through another funeral home

whose owners went " belly up " in several states and

could not stand by their sale of burial plots and

caskets. So, we had paid over $4,000 for our caskets

and have nothing at this point. It is in the hands of

the AG, who has turned the management of the business

over to the county, and has filed a lawsuit to try to

recoup as much as possible. There are no caskets, but

they may be able to pay out some restitution for them.

We did not get burial plots, thank heavens, or we

would have been out those as well. Anyway, I talked

with the present management today, and they have made

arrangements with the county that anyone who had

purchased a casket would have that honored on an

as-need basis, and they will try to supply a casket of

comparable quality. So that was a little relief, but

I am concerned that they won't be the quality we had

purchased.

The best-laid plans of mice and men....

We are having pouring rain right now; where was it

when we had 100+ heat and needed it so much worse?

__________________________________________________

October 26, 2006

My husband started with short-term memory loss, and in

1999 at the age of 69, he was placed on Aricept. It

seemed to hold it at bay for three-four years. He

started on Lexapro, later changed to Celexa, in 2003.

He worked through Jan of 2004. Broke shoulder in

March 2005 and wrist in Nov. 2005, both of which sent

him downhill more rapidly. Entered the NH in February

this year after a hospital stay for infection. Likely

UTI, but the antibiotic must have taken effect before

they determined for sure exactly what it was. Very

combative, weak, could not stand without help, and

they told me I wouldn't be able to take care of him at

home. By then, hallucinations, some delusion, extreme

rigidity, Lewy lean, bent-over walking gait, starting

to have urinary and bowel problems but not completely

incontinent.

A year ago now, he was raking the lawn, hauling trash

out to the curb, helping with dishes, some vacuuming

and dusting, etc. Now, one year later, he is

completely helpless, incontinent, has to be fed, takes

2-3 aides to move him and on and on. They just

started using the lift at the NH a few weeks ago. He

now recognizes no one, even me, barely knows his name,

doesn't know his parents or brothers/sisters' names.

He is not interested in TV, reading, games, nothing.

I believe he has lost a lot of sight, because I asked

him today if he could see me, and he said he couldn't.

He barely can open his eyes, and when he does, it's

like a blind person looking.

I cannot believe the deterioration in a year's time.

He has never been formally diagnosed as LBD, although

two doctors have agreed with me that he probably has

it.

--- Sandie and Pearce

wrote:

> June-

>

> Trust your heart. I think it is a good idea that

> you

> asked Hospice to get involved also. Please remind

> us how long your husband has struggled with LBD.

>

> Our hearts go out to you-

>

> Sandie and

> Des Moines, IA

> (had the pouring rain through the night, high of 45

> today)

>

> -- My Husband's Condition

>

> Yesterday afternoon when I went to the NH, I found

> my

> husband in very bad shape. He had not been good

> since

> Sunday, the last time he ate anything. I had fed

> him

> most of his dinner. Monday, he did not eat

> breakfast,

> lunch, and his head was hanging forward so much, I

> couldn't get any dinner in him. It just came back

> out.

> He did not eat breakfast Tues, and they didn't

> think

> he ate lunch either. Very unresponsive to

> everything

> but pain, fever of 100+ (axillary and his normal

> temp

> is 97.6), rapid somewhat irregular heartbeat. They

> had taken a chest x-ray and done a UA and CBC on

> Tuesday, all of which they said were negative.

> They,

> in essence, said he was " code, " and led me to

> believe

> he was in the last stages. I really believe he

> would

> have been had I not elected to take him to the ER.

> I

> did check him for mottling and found none. They

> also

> told me he had lost 10# since his hospital stay from

> Oct. 5-9. He was good the first day back from the

> hosp. but had deteriorated daily. I made the

> decision

> to call the ambulance and have him taken to the

> hospital. I tried to get a direct admittance rather

> that the ER situation, but since the NH said all his

> tests were negative, we had to go to ER. Another

> five

> hours spent there, at which time they retested

> urine,

> blood, chest x-ray, EKG. He was really out of it,

> again severely dehydrated, and unresponsive to

> anything but pain when they moved him or jabbed him

> for the blood tests. When they finally got all the

> results, they said he had a massive infection

> somewhere, probably UTI, with possible sepsis; wbc

> was

> 26,000; 10,000 is high; and severe dehydration.

> Started antibiotic IV as well as rehydration. His

> bed

> sore is worse again. This is just three weeks

> tomorrow from when he went to the hospital before

> with

> UTI, asp. pneu. and severe dehydration.

>

> This afternoon, he was better; was talking garbled,

> but awake for awhile. They gave him a breathing

> treatment, put an air mattress on the bed, took

> several more vials of blood for culture testing, and

> he went to sleep. I had a couple of things to do so

> left about 4:15 and then came back at supper time.

> He

> was asleep but was able to wake up to eat and ate

> fairly well. The food is much, much better than the

> NH. Turkey/dressing/gravy/green beans/roll and

> butter/tapioca pudding/juice and iced tea. Really

> made me hungry! He had a little difficulty in

> swallowing but did when I gave him sips of liquid.

> He

> can't always remember how to suck on the straw.

>

> Here's my predicament. This is the second time he

> has

> been revived at the hospital. Both of these times,

> I

> know he wouldn't have made it if not for that. I do

> not want to take him back to the NH, because I think

> this will happen again. I know it's just a matter

> of

> time before the antibiotics no longer will work,

> too.

> I'm not sure the NH is doing what they can, possibly

> because they know his case is eventually hopeless,

> so

> why worry! Am I paranoid or what? I talked to

> Hospice, and they will take him to their Hospice

> House, but it will be for " end " care. They will not

> resuscitate nor give him antibiotics, but will only

> make him comfortable. In other words, if he has

> another infection, he will be allowed to " go " with

> as

> much comfort as they can. They will keep him as

> long

> as need be.

>

> The only other NHs in town that would be better are

> private pay; one will take Medicare/Medicaid, but

> they

> have a long waiting list. The rest of the NHs, from

> what I have heard from other people, have the same

> problems that this one does; some people say they're

> okay; others say they wouldn't take anyone there. I

> don't think it would be in his best interest to move

> him to another facility that may not be any better

> than where he is now. Any advice or comments anyone

> can give would be appreciated. I really don't know

> what to do, and I know they will only keep him at

> the

> hospital until he stabilizes.

>

> After this happened so fast, I thought I had better

> visit the funeral home, who I had talked with some

> before, and make some arrangements should this

> happen

> again or he not improve. Several years ago, we had

> prepurchased caskets through another funeral home

> whose owners went " belly up " in several states and

> could not stand by their sale of burial plots and

> caskets. So, we had paid over $4,000 for our

> caskets

> and have nothing at this point. It is in the hands

> of

> the AG, who has turned the management of the

> business

> over to the county, and has filed a lawsuit to try

> to

> recoup as much as possible. There are no caskets,

> but

> they may be able to pay out some restitution for

> them.

> We did not get burial plots, thank heavens, or we

> would have been out those as well. Anyway, I talked

> with the present management today, and they have

> made

> arrangements with the county that anyone who had

> purchased a casket would have that honored on an

> as-need basis, and they will try to supply a casket

> of

> comparable quality. So that was a little relief,

> but

> I am concerned that they won't be the quality we had

> purchased.

>

> The best-laid plans of mice and men....

>

> We are having pouring rain right now; where was it

> when we had 100+ heat and needed it so much worse?

>

> __________________________________________________

>

October 26, 2006

June,

In the links at the bottom of this message, if you click on it, I think

has included some of the Hospice information.

If he isn't eating or walking those are the two major things that qualify him

for Hospice. And that Medicare does pay everything.

Imogene is right he can stay on Hospice unless or until he is " doing better. "

Then they sometimes take him off. But he can can go off and on at least 3 times

and I don't know if that is 3 times a year or three times in the life of

Hospice.

You may want to check out the Link.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

My Husband's Condition

>

> Yesterday afternoon when I went to the NH, I found

> my

> husband in very bad shape. He had not been good

> since

> Sunday, the last time he ate anything. I had fed

> him

> most of his dinner. Monday, he did not eat

> breakfast,

> lunch, and his head was hanging forward so much, I

> couldn't get any dinner in him. It just came back

> out.

> He did not eat breakfast Tues, and they didn't

> think

> he ate lunch either. Very unresponsive to

> everything

> but pain, fever of 100+ (axillary and his normal

> temp

> is 97.6), rapid somewhat irregular heartbeat. They

> had taken a chest x-ray and done a UA and CBC on

> Tuesday, all of which they said were negative.

> They,

> in essence, said he was " code, " and led me to

> believe

> he was in the last stages. I really believe he

> would

> have been had I not elected to take him to the ER.

> I

> did check him for mottling and found none. They

> also

> told me he had lost 10# since his hospital stay from

> Oct. 5-9. He was good the first day back from the

> hosp. but had deteriorated daily. I made the

> decision

> to call the ambulance and have him taken to the

> hospital. I tried to get a direct admittance rather

> that the ER situation, but since the NH said all his

> tests were negative, we had to go to ER. Another

> five

> hours spent there, at which time they retested

> urine,

> blood, chest x-ray, EKG. He was really out of it,

> again severely dehydrated, and unresponsive to

> anything but pain when they moved him or jabbed him

> for the blood tests. When they finally got all the

> results, they said he had a massive infection

> somewhere, probably UTI, with possible sepsis; wbc

> was

> 26,000; 10,000 is high; and severe dehydration.

> Started antibiotic IV as well as rehydration. His

> bed

> sore is worse again. This is just three weeks

> tomorrow from when he went to the hospital before

> with

> UTI, asp. pneu. and severe dehydration.

>

> This afternoon, he was better; was talking garbled,

> but awake for awhile. They gave him a breathing

> treatment, put an air mattress on the bed, took

> several more vials of blood for culture testing, and

> he went to sleep. I had a couple of things to do so

> left about 4:15 and then came back at supper time.

> He

> was asleep but was able to wake up to eat and ate

> fairly well. The food is much, much better than the

> NH. Turkey/dressing/gravy/green beans/roll and

> butter/tapioca pudding/juice and iced tea. Really

> made me hungry! He had a little difficulty in

> swallowing but did when I gave him sips of liquid.

> He

> can't always remember how to suck on the straw.

>

> Here's my predicament. This is the second time he

> has

> been revived at the hospital. Both of these times,

> I

> know he wouldn't have made it if not for that. I do

> not want to take him back to the NH, because I think

> this will happen again. I know it's just a matter

> of

> time before the antibiotics no longer will work,

> too.

> I'm not sure the NH is doing what they can, possibly

> because they know his case is eventually hopeless,

> so

> why worry! Am I paranoid or what? I talked to

> Hospice, and they will take him to their Hospice

> House, but it will be for " end " care. They will not

> resuscitate nor give him antibiotics, but will only

> make him comfortable. In other words, if he has

> another infection, he will be allowed to " go " with

> as

> much comfort as they can. They will keep him as

> long

> as need be.

>

> The only other NHs in town that would be better are

> private pay; one will take Medicare/Medicaid, but

> they

> have a long waiting list. The rest of the NHs, from

> what I have heard from other people, have the same

> problems that this one does; some people say they're

> okay; others say they wouldn't take anyone there. I

> don't think it would be in his best interest to move

> him to another facility that may not be any better

> than where he is now. Any advice or comments anyone

> can give would be appreciated. I really don't know

> what to do, and I know they will only keep him at

> the

> hospital until he stabilizes.

>

> After this happened so fast, I thought I had better

> visit the funeral home, who I had talked with some

> before, and make some arrangements should this

> happen

> again or he not improve. Several years ago, we had

> prepurchased caskets through another funeral home

> whose owners went " belly up " in several states and

> could not stand by their sale of burial plots and

> caskets. So, we had paid over $4,000 for our

> caskets

> and have nothing at this point. It is in the hands

> of

> the AG, who has turned the management of the

> business

> over to the county, and has filed a lawsuit to try

> to

> recoup as much as possible. There are no caskets,

> but

> they may be able to pay out some restitution for

> them.

> We did not get burial plots, thank heavens, or we

> would have been out those as well. Anyway, I talked

> with the present management today, and they have

> made

> arrangements with the county that anyone who had

> purchased a casket would have that honored on an

> as-need basis, and they will try to supply a casket

> of

> comparable quality. So that was a little relief,

> but

> I am concerned that they won't be the quality we had

> purchased.

>

> The best-laid plans of mice and men....

>

> We are having pouring rain right now; where was it

> when we had 100+ heat and needed it so much worse?

>

> __________________________________________________

>

October 28, 2006

Hi June

My mother also deteriorated very rapidly as your

husband did. My Mom was living on her own in May of

05, then hospitalized with dehydration and could no

longer live alone. She moved in with me for 10 months

and then the NH. She started off on her own in her own

home and in one year's time she was on Hospice and had

not interests in anything and does not recognize

anyone. She is totally incontinent and is spoon feed

puree foods. It is a horrible thing to watch happen to

someone you love. I think the reason my mom went down

hill so fast was due to taking her off of Aricept to

abruptly. It was 3 weeks later and she could only talk

nonsense when she did choose to talk. Did you husband

have any med changes that could have affected him like

this? I was just curious?

Dena

Mother (84) End stages LBD

--- June Christensen

wrote:

> My husband started with short-term memory loss, and

> in

> 1999 at the age of 69, he was placed on Aricept. It

> seemed to hold it at bay for three-four years. He

> started on Lexapro, later changed to Celexa, in

> 2003.

> He worked through Jan of 2004. Broke shoulder in

> March 2005 and wrist in Nov. 2005, both of which

> sent

> him downhill more rapidly. Entered the NH in

> February

> this year after a hospital stay for infection.

> Likely

> UTI, but the antibiotic must have taken effect

> before

> they determined for sure exactly what it was. Very

> combative, weak, could not stand without help, and

> they told me I wouldn't be able to take care of him

> at

> home. By then, hallucinations, some delusion,

> extreme

> rigidity, Lewy lean, bent-over walking gait,

> starting

> to have urinary and bowel problems but not

> completely

> incontinent.

>

> A year ago now, he was raking the lawn, hauling

> trash

> out to the curb, helping with dishes, some vacuuming

> and dusting, etc. Now, one year later, he is

> completely helpless, incontinent, has to be fed,

> takes

> 2-3 aides to move him and on and on. They just

> started using the lift at the NH a few weeks ago.

> He

> now recognizes no one, even me, barely knows his

> name,

> doesn't know his parents or brothers/sisters' names.

>

> He is not interested in TV, reading, games, nothing.

>

> I believe he has lost a lot of sight, because I

> asked

> him today if he could see me, and he said he

> couldn't.

> He barely can open his eyes, and when he does, it's

> like a blind person looking.

>

> I cannot believe the deterioration in a year's time.

> He has never been formally diagnosed as LBD,

> although

> two doctors have agreed with me that he probably has

> it.

>

> --- Sandie and Pearce

> wrote:

>

> > June-

> >

> > Trust your heart. I think it is a good idea that

> > you

> > asked Hospice to get involved also. Please remind

> > us how long your husband has struggled with LBD.

> >

> > Our hearts go out to you-

> >

> > Sandie and

> > Des Moines, IA

> > (had the pouring rain through the night, high of

> 45

> > today)

> >

> > -- My Husband's Condition

> >

> > Yesterday afternoon when I went to the NH, I found

> > my

> > husband in very bad shape. He had not been good

> > since

> > Sunday, the last time he ate anything. I had fed

> > him

> > most of his dinner. Monday, he did not eat

> > breakfast,

> > lunch, and his head was hanging forward so much, I

> > couldn't get any dinner in him. It just came back

> > out.

> > He did not eat breakfast Tues, and they didn't

> > think

> > he ate lunch either. Very unresponsive to

> > everything

> > but pain, fever of 100+ (axillary and his normal

> > temp

> > is 97.6), rapid somewhat irregular heartbeat.

> They

> > had taken a chest x-ray and done a UA and CBC on

> > Tuesday, all of which they said were negative.

> > They,

> > in essence, said he was " code, " and led me to

> > believe

> > he was in the last stages. I really believe he

> > would

> > have been had I not elected to take him to the ER.

>

> > I

> > did check him for mottling and found none. They

> > also

> > told me he had lost 10# since his hospital stay

> from

> > Oct. 5-9. He was good the first day back from the

> > hosp. but had deteriorated daily. I made the

> > decision

> > to call the ambulance and have him taken to the

> > hospital. I tried to get a direct admittance

> rather

> > that the ER situation, but since the NH said all

> his

> > tests were negative, we had to go to ER. Another

> > five

> > hours spent there, at which time they retested

> > urine,

> > blood, chest x-ray, EKG. He was really out of it,

> > again severely dehydrated, and unresponsive to

> > anything but pain when they moved him or jabbed

> him

> > for the blood tests. When they finally got all

> the

> > results, they said he had a massive infection

> > somewhere, probably UTI, with possible sepsis; wbc

> > was

> > 26,000; 10,000 is high; and severe dehydration.

> > Started antibiotic IV as well as rehydration. His

> > bed

> > sore is worse again. This is just three weeks

> > tomorrow from when he went to the hospital before

> > with

> > UTI, asp. pneu. and severe dehydration.

> >

> > This afternoon, he was better; was talking

> garbled,

> > but awake for awhile. They gave him a breathing

> > treatment, put an air mattress on the bed, took

> > several more vials of blood for culture testing,

> and

> > he went to sleep. I had a couple of things to do

> so

> > left about 4:15 and then came back at supper time.

>

> > He

> > was asleep but was able to wake up to eat and ate

> > fairly well. The food is much, much better than

> the

> > NH. Turkey/dressing/gravy/green beans/roll and

> > butter/tapioca pudding/juice and iced tea. Really

> > made me hungry! He had a little difficulty in

> > swallowing but did when I gave him sips of liquid.

>

> > He

> > can't always remember how to suck on the straw.

> >

> > Here's my predicament. This is the second time he

> > has

> > been revived at the hospital. Both of these

> times,

> > I

> > know he wouldn't have made it if not for that. I

> do

> > not want to take him back to the NH, because I

> think

> > this will happen again. I know it's just a matter

> > of

> > time before the antibiotics no longer will work,

> > too.

> > I'm not sure the NH is doing what they can,

> possibly

> > because they know his case is eventually hopeless,

> > so

> > why worry! Am I paranoid or what? I talked to

> > Hospice, and they will take him to their Hospice

> > House, but it will be for " end " care. They will

> not

> > resuscitate nor give him antibiotics, but will

> only

> > make him comfortable. In other words, if he has

> > another infection, he will be allowed to " go " with

> > as

> > much comfort as they can. They will keep him as

> > long

> > as need be.

> >

> > The only other NHs in town that would be better

> are

> > private pay; one will take Medicare/Medicaid, but

> > they

> > have a long waiting list. The rest of the NHs,

> from

>

=== message truncated ===

________________________________________________________________________________\

____

Everyone is raving about the all-new Yahoo! Mail

(http://advision.webevents.yahoo.com/mailbeta/)

October 28, 2006

He was on Aricept until about September this year, and

I don't know that he declined any more from that,

except for the infections increasing, which I don't

think are related to the meds. It's just hard to

tell, but his decline started a year ago in earnest

when he broke his wrist. He could no longer do

anything by himself, and it really seemed to be the

beginning of the end.

--- Dena LEAVITT wrote:

> Hi June

>

> My mother also deteriorated very rapidly as your

> husband did. My Mom was living on her own in May of

> 05, then hospitalized with dehydration and could no

> longer live alone. She moved in with me for 10

> months

> and then the NH. She started off on her own in her

> own

> home and in one year's time she was on Hospice and

> had

> not interests in anything and does not recognize

> anyone. She is totally incontinent and is spoon feed

> puree foods. It is a horrible thing to watch happen

> to

> someone you love. I think the reason my mom went

> down

> hill so fast was due to taking her off of Aricept to

> abruptly. It was 3 weeks later and she could only

> talk

> nonsense when she did choose to talk. Did you

> husband

> have any med changes that could have affected him

> like

> this? I was just curious?

>

> Dena

> Mother (84) End stages LBD

>

> --- June Christensen

> wrote:

>

> > My husband started with short-term memory loss,

> and

> > in

> > 1999 at the age of 69, he was placed on Aricept.

> It

> > seemed to hold it at bay for three-four years. He

> > started on Lexapro, later changed to Celexa, in

> > 2003.

> > He worked through Jan of 2004. Broke shoulder in

> > March 2005 and wrist in Nov. 2005, both of which

> > sent

> > him downhill more rapidly. Entered the NH in

> > February

> > this year after a hospital stay for infection.

> > Likely

> > UTI, but the antibiotic must have taken effect

> > before

> > they determined for sure exactly what it was. Very

> > combative, weak, could not stand without help, and

> > they told me I wouldn't be able to take care of

> him

> > at

> > home. By then, hallucinations, some delusion,

> > extreme

> > rigidity, Lewy lean, bent-over walking gait,

> > starting

> > to have urinary and bowel problems but not

> > completely

> > incontinent.

> >

> > A year ago now, he was raking the lawn, hauling

> > trash

> > out to the curb, helping with dishes, some

> vacuuming

> > and dusting, etc. Now, one year later, he is

> > completely helpless, incontinent, has to be fed,

> > takes

> > 2-3 aides to move him and on and on. They just

> > started using the lift at the NH a few weeks ago.

> > He

> > now recognizes no one, even me, barely knows his

> > name,

> > doesn't know his parents or brothers/sisters'

> names.

> >

> > He is not interested in TV, reading, games,

> nothing.

> >

> > I believe he has lost a lot of sight, because I

> > asked

> > him today if he could see me, and he said he

> > couldn't.

> > He barely can open his eyes, and when he does,

> it's

> > like a blind person looking.

> >

> > I cannot believe the deterioration in a year's

> time.

> > He has never been formally diagnosed as LBD,

> > although

> > two doctors have agreed with me that he probably

> has

> > it.

> >

> > --- Sandie and Pearce

> > wrote:

> >

> > > June-

> > >

> > > Trust your heart. I think it is a good idea

> that

> > > you

> > > asked Hospice to get involved also. Please

> remind

> > > us how long your husband has struggled with LBD.

> > >

> > > Our hearts go out to you-

> > >

> > > Sandie and

> > > Des Moines, IA

> > > (had the pouring rain through the night, high of

> > 45

> > > today)

> > >

> > > -- My Husband's Condition

> > >

> > > Yesterday afternoon when I went to the NH, I

> found

> > > my

> > > husband in very bad shape. He had not been good

> > > since

> > > Sunday, the last time he ate anything. I had

> fed

> > > him

> > > most of his dinner. Monday, he did not eat

> > > breakfast,

> > > lunch, and his head was hanging forward so much,

> I

> > > couldn't get any dinner in him. It just came

> back

> > > out.

> > > He did not eat breakfast Tues, and they didn't

> > > think

> > > he ate lunch either. Very unresponsive to

> > > everything

> > > but pain, fever of 100+ (axillary and his normal

> > > temp

> > > is 97.6), rapid somewhat irregular heartbeat.

> > They

> > > had taken a chest x-ray and done a UA and CBC on

> > > Tuesday, all of which they said were negative.

> > > They,

> > > in essence, said he was " code, " and led me to

> > > believe

> > > he was in the last stages. I really believe he

> > > would

> > > have been had I not elected to take him to the

> ER.

> >

> > > I

> > > did check him for mottling and found none. They

> > > also

> > > told me he had lost 10# since his hospital stay

> > from

> > > Oct. 5-9. He was good the first day back from

> the

> > > hosp. but had deteriorated daily. I made the

> > > decision

> > > to call the ambulance and have him taken to the

> > > hospital. I tried to get a direct admittance

> > rather

> > > that the ER situation, but since the NH said all

> > his

> > > tests were negative, we had to go to ER.

> Another

> > > five

> > > hours spent there, at which time they retested

> > > urine,

> > > blood, chest x-ray, EKG. He was really out of

> it,

> > > again severely dehydrated, and unresponsive to

> > > anything but pain when they moved him or jabbed

> > him

> > > for the blood tests. When they finally got all

> > the

> > > results, they said he had a massive infection

> > > somewhere, probably UTI, with possible sepsis;

> wbc

> > > was

> > > 26,000; 10,000 is high; and severe dehydration.

> > > Started antibiotic IV as well as rehydration.

> His

> > > bed

> > > sore is worse again. This is just three weeks

> > > tomorrow from when he went to the hospital

> before

> > > with

> > > UTI, asp. pneu. and severe dehydration.

> > >

> > > This afternoon, he was better; was talking

> > garbled,

> > > but awake for awhile. They gave him a breathing

> > > treatment, put an air mattress on the bed, took

>

=== message truncated ===

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October 28, 2006

Hi June

My mom was really on a downhill decline also, but when

we removed the Aricept she could no longer string a

sentence together or make any sense. Then we quit

walking about 5 or 6 weeks later and I had to place

her in a NH. I don't think the removed of Aricept

brought on her decline just that mentally she could no

longer converse. I don't think I was clear before,

sorry.

Dena

Mother (84) End stages of LBD

--- June Christensen

wrote:

> He was on Aricept until about September this year,

> and

> I don't know that he declined any more from that,

> except for the infections increasing, which I don't

> think are related to the meds. It's just hard to

> tell, but his decline started a year ago in earnest

> when he broke his wrist. He could no longer do

> anything by himself, and it really seemed to be the

> beginning of the end.

>

> --- Dena LEAVITT wrote:

>

> > Hi June

> >

> > My mother also deteriorated very rapidly as your

> > husband did. My Mom was living on her own in May

> of

> > 05, then hospitalized with dehydration and could

> no

> > longer live alone. She moved in with me for 10

> > months

> > and then the NH. She started off on her own in her

> > own

> > home and in one year's time she was on Hospice and

> > had

> > not interests in anything and does not recognize

> > anyone. She is totally incontinent and is spoon

> feed

> > puree foods. It is a horrible thing to watch

> happen

> > to

> > someone you love. I think the reason my mom went

> > down

> > hill so fast was due to taking her off of Aricept

> to

> > abruptly. It was 3 weeks later and she could only

> > talk

> > nonsense when she did choose to talk. Did you

> > husband

> > have any med changes that could have affected him

> > like

> > this? I was just curious?

> >

> > Dena

> > Mother (84) End stages LBD

> >

> > --- June Christensen

> > wrote:

> >

> > > My husband started with short-term memory loss,

> > and

> > > in

> > > 1999 at the age of 69, he was placed on Aricept.

>

> > It

> > > seemed to hold it at bay for three-four years.

> He

> > > started on Lexapro, later changed to Celexa, in

> > > 2003.

> > > He worked through Jan of 2004. Broke shoulder

> in

> > > March 2005 and wrist in Nov. 2005, both of which

> > > sent

> > > him downhill more rapidly. Entered the NH in

> > > February

> > > this year after a hospital stay for infection.

> > > Likely

> > > UTI, but the antibiotic must have taken effect

> > > before

> > > they determined for sure exactly what it was.

> Very

> > > combative, weak, could not stand without help,

> and

> > > they told me I wouldn't be able to take care of

> > him

> > > at

> > > home. By then, hallucinations, some delusion,

> > > extreme

> > > rigidity, Lewy lean, bent-over walking gait,

> > > starting

> > > to have urinary and bowel problems but not

> > > completely

> > > incontinent.

> > >

> > > A year ago now, he was raking the lawn, hauling

> > > trash

> > > out to the curb, helping with dishes, some

> > vacuuming

> > > and dusting, etc. Now, one year later, he is

> > > completely helpless, incontinent, has to be fed,

> > > takes

> > > 2-3 aides to move him and on and on. They just

> > > started using the lift at the NH a few weeks

> ago.

> > > He

> > > now recognizes no one, even me, barely knows his

> > > name,

> > > doesn't know his parents or brothers/sisters'

> > names.

> > >

> > > He is not interested in TV, reading, games,

> > nothing.

> > >

> > > I believe he has lost a lot of sight, because I

> > > asked

> > > him today if he could see me, and he said he

> > > couldn't.

> > > He barely can open his eyes, and when he does,

> > it's

> > > like a blind person looking.

> > >

> > > I cannot believe the deterioration in a year's

> > time.

> > > He has never been formally diagnosed as LBD,

> > > although

> > > two doctors have agreed with me that he probably

> > has

> > > it.

> > >

> > > --- Sandie and Pearce

>

> > > wrote:

> > >

> > > > June-

> > > >

> > > > Trust your heart. I think it is a good idea

> > that

> > > > you

> > > > asked Hospice to get involved also. Please

> > remind

> > > > us how long your husband has struggled with

> LBD.

> > > >

> > > > Our hearts go out to you-

> > > >

> > > > Sandie and

> > > > Des Moines, IA

> > > > (had the pouring rain through the night, high

> of

> > > 45

> > > > today)

> > > >

> > > > -- My Husband's

> Condition

> > > >

> > > > Yesterday afternoon when I went to the NH, I

> > found

> > > > my

> > > > husband in very bad shape. He had not been

> good

> > > > since

> > > > Sunday, the last time he ate anything. I had

> > fed

> > > > him

> > > > most of his dinner. Monday, he did not eat

> > > > breakfast,

> > > > lunch, and his head was hanging forward so

> much,

> > I

> > > > couldn't get any dinner in him. It just came

> > back

> > > > out.

> > > > He did not eat breakfast Tues, and they

> didn't

> > > > think

> > > > he ate lunch either. Very unresponsive to

> > > > everything

> > > > but pain, fever of 100+ (axillary and his

> normal

> > > > temp

> > > > is 97.6), rapid somewhat irregular heartbeat.

> > > They

> > > > had taken a chest x-ray and done a UA and CBC

> on

> > > > Tuesday, all of which they said were negative.

>

> > > > They,

> > > > in essence, said he was " code, " and led me to

> > > > believe

> > > > he was in the last stages. I really believe

> he

> > > > would

> > > > have been had I not elected to take him to the

> > ER.

> > >

> > > > I

> > > > did check him for mottling and found none.

> They

> > > > also

> > > > told me he had lost 10# since his hospital

> stay

> > > from

> > > > Oct. 5-9. He was good the first day back from

> > the

> > > > hosp. but had deteriorated daily. I made the

>

=== message truncated ===

________________________________________________________________________________\

____

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October 28, 2006

Dear June - My prayers are with you and your husband. Although I've refused to

put my mom in the hospital, she, too, has declined rapidly in a short while.

Very stable until mid-June, when she developed multiple infections - now she is

on what I imagine will be long-term hospice. May I ask if your husband is,

indeed, " end-stage " or is some/most of what has happened so quickly due to the

sepsis? That can make anyone appear totally demented and cause massive physical

weakness. If you are seeing good improvement after even a few days on

antibiotics, it will be easier to decide what's next. If you LO was hospitalized

and taking antibiotics, the first or even second re-tests for infection can show

negative, as the antibiotic still in the system masks the actual new or

continuing infection. Also, some antibiotics help some infections, but may not

be the best for that specific bug or sometimes aren't given for long enough.

Infections, expecially in children, the elderly and other

weak folks, are recurrent, relapsing or even chronic. And some meds, including

some antibiotics, cause weakness and severe dementia-like behavior. It's so hard

to determine what's due to the disease itself and what is underlying problems

such as infection, poor O2 intake, etc.

I totally agree about following your heart. I understand you do not want your

LO back at the NH under the same conditions, as they don't sound very attentive.

Does the hospice you called provide services at NHs? Many do. That would get

your LO out of the general NH population and NH staff wouldn't follow him -

hospice would. It can by law go on for years, as long as the person meets the

criteria. It would address all his needs, and if he's pretty stable with quality

of life still possible, they would follow your wishes, treat infections, broken

bones, whatever - just as with anyone else. They send their own nurses,

caregivers, doctors, even PT and OT - all the services a good NH should provide

to all residents at all times. So if you don't want to transfer your husband,

hospice in the NH would be one way to get good care. Most programs also bring

hospice to your own home - with all the medical and non-medical services you

could need. Is this hospice program the only

one in your area? If there are others anywhere nearby, it would be worthwhile

calling to know the scope of their programs and if they offer options other than

their own facilities. You and your husband are in my prayers. Peace, Lin

Dena LEAVITT wrote:

Hi June

My mother also deteriorated very rapidly as your

husband did. My Mom was living on her own in May of

05, then hospitalized with dehydration and could no

longer live alone. She moved in with me for 10 months

and then the NH. She started off on her own in her own

home and in one year's time she was on Hospice and had

not interests in anything and does not recognize

anyone. She is totally incontinent and is spoon feed

puree foods. It is a horrible thing to watch happen to

someone you love. I think the reason my mom went down

hill so fast was due to taking her off of Aricept to

abruptly. It was 3 weeks later and she could only talk

nonsense when she did choose to talk. Did you husband

have any med changes that could have affected him like

this? I was just curious?

Dena

Mother (84) End stages LBD

--- June Christensen

wrote:

> My husband started with short-term memory loss, and

> in

> 1999 at the age of 69, he was placed on Aricept. It

> seemed to hold it at bay for three-four years. He

> started on Lexapro, later changed to Celexa, in

> 2003.

> He worked through Jan of 2004. Broke shoulder in

> March 2005 and wrist in Nov. 2005, both of which

> sent

> him downhill more rapidly. Entered the NH in

> February

> this year after a hospital stay for infection.

> Likely

> UTI, but the antibiotic must have taken effect

> before

> they determined for sure exactly what it was. Very

> combative, weak, could not stand without help, and

> they told me I wouldn't be able to take care of him

> at

> home. By then, hallucinations, some delusion,

> extreme

> rigidity, Lewy lean, bent-over walking gait,

> starting

> to have urinary and bowel problems but not

> completely

> incontinent.

>

> A year ago now, he was raking the lawn, hauling

> trash

> out to the curb, helping with dishes, some vacuuming

> and dusting, etc. Now, one year later, he is

> completely helpless, incontinent, has to be fed,

> takes

> 2-3 aides to move him and on and on. They just

> started using the lift at the NH a few weeks ago.

> He

> now recognizes no one, even me, barely knows his

> name,

> doesn't know his parents or brothers/sisters' names.

>

> He is not interested in TV, reading, games, nothing.

>

> I believe he has lost a lot of sight, because I

> asked

> him today if he could see me, and he said he

> couldn't.

> He barely can open his eyes, and when he does, it's

> like a blind person looking.

>

> I cannot believe the deterioration in a year's time.

> He has never been formally diagnosed as LBD,

> although

> two doctors have agreed with me that he probably has

> it.

>

> --- Sandie and Pearce

> wrote:

>

> > June-

> >

> > Trust your heart. I think it is a good idea that

> > you

> > asked Hospice to get involved also. Please remind

> > us how long your husband has struggled with LBD.

> >

> > Our hearts go out to you-

> >

> > Sandie and

> > Des Moines, IA

> > (had the pouring rain through the night, high of

> 45

> > today)

> >

> > -- My Husband's Condition

> >

> > Yesterday afternoon when I went to the NH, I found

> > my

> > husband in very bad shape. He had not been good

> > since

> > Sunday, the last time he ate anything. I had fed

> > him

> > most of his dinner. Monday, he did not eat

> > breakfast,

> > lunch, and his head was hanging forward so much, I

> > couldn't get any dinner in him. It just came back

> > out.

> > He did not eat breakfast Tues, and they didn't

> > think

> > he ate lunch either. Very unresponsive to

> > everything

> > but pain, fever of 100+ (axillary and his normal

> > temp

> > is 97.6), rapid somewhat irregular heartbeat.

> They

> > had taken a chest x-ray and done a UA and CBC on

> > Tuesday, all of which they said were negative.

> > They,

> > in essence, said he was " code, " and led me to

> > believe

> > he was in the last stages. I really believe he

> > would

> > have been had I not elected to take him to the ER.

>

> > I

> > did check him for mottling and found none. They

> > also

> > told me he had lost 10# since his hospital stay

> from

> > Oct. 5-9. He was good the first day back from the

> > hosp. but had deteriorated daily. I made the

> > decision

> > to call the ambulance and have him taken to the

> > hospital. I tried to get a direct admittance

> rather

> > that the ER situation, but since the NH said all

> his

> > tests were negative, we had to go to ER. Another

> > five

> > hours spent there, at which time they retested

> > urine,

> > blood, chest x-ray, EKG. He was really out of it,

> > again severely dehydrated, and unresponsive to

> > anything but pain when they moved him or jabbed

> him

> > for the blood tests. When they finally got all

> the

> > results, they said he had a massive infection

> > somewhere, probably UTI, with possible sepsis; wbc

> > was

> > 26,000; 10,000 is high; and severe dehydration.

> > Started antibiotic IV as well as rehydration. His

> > bed

> > sore is worse again. This is just three weeks

> > tomorrow from when he went to the hospital before

> > with

> > UTI, asp. pneu. and severe dehydration.

> >

> > This afternoon, he was better; was talking

> garbled,

> > but awake for awhile. They gave him a breathing

> > treatment, put an air mattress on the bed, took

> > several more vials of blood for culture testing,

> and

> > he went to sleep. I had a couple of things to do

> so

> > left about 4:15 and then came back at supper time.

>

> > He

> > was asleep but was able to wake up to eat and ate

> > fairly well. The food is much, much better than

> the

> > NH. Turkey/dressing/gravy/green beans/roll and

> > butter/tapioca pudding/juice and iced tea. Really

> > made me hungry! He had a little difficulty in

> > swallowing but did when I gave him sips of liquid.

>

> > He

> > can't always remember how to suck on the straw.

> >

> > Here's my predicament. This is the second time he

> > has

> > been revived at the hospital. Both of these

> times,

> > I

> > know he wouldn't have made it if not for that. I

> do

> > not want to take him back to the NH, because I

> think

> > this will happen again. I know it's just a matter

> > of

> > time before the antibiotics no longer will work,

> > too.

> > I'm not sure the NH is doing what they can,

> possibly

> > because they know his case is eventually hopeless,

> > so

> > why worry! Am I paranoid or what? I talked to

> > Hospice, and they will take him to their Hospice

> > House, but it will be for " end " care. They will

> not

> > resuscitate nor give him antibiotics, but will

> only

> > make him comfortable. In other words, if he has

> > another infection, he will be allowed to " go " with

> > as

> > much comfort as they can. They will keep him as

> > long

> > as need be.

> >

> > The only other NHs in town that would be better

> are

> > private pay; one will take Medicare/Medicaid, but

> > they

> > have a long waiting list. The rest of the NHs,

> from

>

=== message truncated ===

________________________________________________________________________________\

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Everyone is raving about the all-new Yahoo! Mail

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Welcome to LBDcaregivers.

October 28, 2006

June-

Thank you for this reminder and taking us through

the timeline.

Thinking of you this evening and truly wishing life

is treating you kind.

Cyber Hugs-

Sandie and

-- My Husband's Condition

>

> Yesterday afternoon when I went to the NH, I found

> my

> husband in very bad shape. He had not been good

> since

> Sunday, the last time he ate anything. I had fed

> him

> most of his dinner. Monday, he did not eat

> breakfast,

> lunch, and his head was hanging forward so much, I

> couldn't get any dinner in him. It just came back

> out.

> He did not eat breakfast Tues, and they didn't

> think

> he ate lunch either. Very unresponsive to

> everything

> but pain, fever of 100+ (axillary and his normal

> temp

> is 97.6), rapid somewhat irregular heartbeat. They

> had taken a chest x-ray and done a UA and CBC on

> Tuesday, all of which they said were negative.

> They,

> in essence, said he was " code, " and led me to

> believe

> he was in the last stages. I really believe he

> would

> have been had I not elected to take him to the ER.

> I

> did check him for mottling and found none. They

> also

> told me he had lost 10# since his hospital stay from

> Oct. 5-9. He was good the first day back from the

> hosp. but had deteriorated daily. I made the

> decision

> to call the ambulance and have him taken to the

> hospital. I tried to get a direct admittance rather

> that the ER situation, but since the NH said all his

> tests were negative, we had to go to ER. Another

> five

> hours spent there, at which time they retested

> urine,

> blood, chest x-ray, EKG. He was really out of it,

> again severely dehydrated, and unresponsive to

> anything but pain when they moved him or jabbed him

> for the blood tests. When they finally got all the

> results, they said he had a massive infection

> somewhere, probably UTI, with possible sepsis; wbc

> was

> 26,000; 10,000 is high; and severe dehydration.

> Started antibiotic IV as well as rehydration. His

> bed

> sore is worse again. This is just three weeks

> tomorrow from when he went to the hospital before

> with

> UTI, asp. pneu. and severe dehydration.

>

> This afternoon, he was better; was talking garbled,

> but awake for awhile. They gave him a breathing

> treatment, put an air mattress on the bed, took

> several more vials of blood for culture testing, and

> he went to sleep. I had a couple of things to do so

> left about 4:15 and then came back at supper time.

> He

> was asleep but was able to wake up to eat and ate

> fairly well. The food is much, much better than the

> NH. Turkey/dressing/gravy/green beans/roll and

> butter/tapioca pudding/juice and iced tea. Really

> made me hungry! He had a little difficulty in

> swallowing but did when I gave him sips of liquid.

> He

> can't always remember how to suck on the straw.

>

> Here's my predicament. This is the second time he

> has

> been revived at the hospital. Both of these times,

> I

> know he wouldn't have made it if not for that. I do

> not want to take him back to the NH, because I think

> this will happen again. I know it's just a matter

> of

> time before the antibiotics no longer will work,

> too.

> I'm not sure the NH is doing what they can, possibly

> because they know his case is eventually hopeless,

> so

> why worry! Am I paranoid or what? I talked to

> Hospice, and they will take him to their Hospice

> House, but it will be for " end " care. They will not

> resuscitate nor give him antibiotics, but will only

> make him comfortable. In other words, if he has

> another infection, he will be allowed to " go " with

> as

> much comfort as they can. They will keep him as

> long

> as need be.

>

> The only other NHs in town that would be better are

> private pay; one will take Medicare/Medicaid, but

> they

> have a long waiting list. The rest of the NHs, from

> what I have heard from other people, have the same

> problems that this one does; some people say they're

> okay; others say they wouldn't take anyone there. I

> don't think it would be in his best interest to move

> him to another facility that may not be any better

> than where he is now. Any advice or comments anyone

> can give would be appreciated. I really don't know

> what to do, and I know they will only keep him at

> the

> hospital until he stabilizes.

>

> After this happened so fast, I thought I had better

> visit the funeral home, who I had talked with some

> before, and make some arrangements should this

> happen

> again or he not improve. Several years ago, we had

> prepurchased caskets through another funeral home

> whose owners went " belly up " in several states and

> could not stand by their sale of burial plots and

> caskets. So, we had paid over $4,000 for our

> caskets

> and have nothing at this point. It is in the hands

> of

> the AG, who has turned the management of the

> business

> over to the county, and has filed a lawsuit to try

> to

> recoup as much as possible. There are no caskets,

> but

> they may be able to pay out some restitution for

> them.

> We did not get burial plots, thank heavens, or we

> would have been out those as well. Anyway, I talked

> with the present management today, and they have

> made

> arrangements with the county that anyone who had

> purchased a casket would have that honored on an

> as-need basis, and they will try to supply a casket

> of

> comparable quality. So that was a little relief,

> but

> I am concerned that they won't be the quality we had

> purchased.

>

> The best-laid plans of mice and men....

>

> We are having pouring rain right now; where was it

> when we had 100+ heat and needed it so much worse?

>

> __________________________________________________

>

October 28, 2006

Thanks to you, too. He was not as good today as he

was yesterday, running another fever, over 99

axillary, but his norm is 97.6 or so. They had given

him Tylenol earlier, too. He was very restless,

pulling at the sheet and blanket and getting them all

over the bed. Then, he went to sleep just before

dinner came, and I couldn't get him awake to eat much.

He kept choking and coughing, so I finally decided

I'd better quit or possible aspiration. Not sure what

is causing the fever, as he has been on antibiotic IV

since Tuesday. It get so discouraging, when one day

they seem better, and the next it's back downhill

again.

Beautiful day in Kansas, in the 70s. Sun and Mon are

to be, too. So, we have to enjoy it while we can.

--- Sandie and Pearce

wrote:

> June-

>

> Thank you for this reminder and taking us through

> the timeline.

>

> Thinking of you this evening and truly wishing life

> is treating you kind.

>

> Cyber Hugs-

>

> Sandie and

>

> -- My Husband's Condition

> >

> > Yesterday afternoon when I went to the NH, I found

> > my

> > husband in very bad shape. He had not been good

> > since

> > Sunday, the last time he ate anything. I had fed

> > him

> > most of his dinner. Monday, he did not eat

> > breakfast,

> > lunch, and his head was hanging forward so much, I

> > couldn't get any dinner in him. It just came back

> > out.

> > He did not eat breakfast Tues, and they didn't

> > think

> > he ate lunch either. Very unresponsive to

> > everything

> > but pain, fever of 100+ (axillary and his normal

> > temp

> > is 97.6), rapid somewhat irregular heartbeat.

> They

> > had taken a chest x-ray and done a UA and CBC on

> > Tuesday, all of which they said were negative.

> > They,

> > in essence, said he was " code, " and led me to

> > believe

> > he was in the last stages. I really believe he

> > would

> > have been had I not elected to take him to the ER.

> > I

> > did check him for mottling and found none. They

> > also

> > told me he had lost 10# since his hospital stay

> from

> > Oct. 5-9. He was good the first day back from the

> > hosp. but had deteriorated daily. I made the

> > decision

> > to call the ambulance and have him taken to the

> > hospital. I tried to get a direct admittance

> rather

> > that the ER situation, but since the NH said all

> his

> > tests were negative, we had to go to ER. Another

> > five

> > hours spent there, at which time they retested

> > urine,

> > blood, chest x-ray, EKG. He was really out of it,

> > again severely dehydrated, and unresponsive to

> > anything but pain when they moved him or jabbed

> him

> > for the blood tests. When they finally got all

> the

> > results, they said he had a massive infection

> > somewhere, probably UTI, with possible sepsis; wbc

> > was

> > 26,000; 10,000 is high; and severe dehydration.

> > Started antibiotic IV as well as rehydration. His

> > bed

> > sore is worse again. This is just three weeks

> > tomorrow from when he went to the hospital before

> > with

> > UTI, asp. pneu. and severe dehydration.

> >

> > This afternoon, he was better; was talking

> garbled,

> > but awake for awhile. They gave him a breathing

> > treatment, put an air mattress on the bed, took

> > several more vials of blood for culture testing,

> and

> > he went to sleep. I had a couple of things to do

> so

> > left about 4:15 and then came back at supper time.

> > He

> > was asleep but was able to wake up to eat and ate

> > fairly well. The food is much, much better than

> the

> > NH. Turkey/dressing/gravy/green beans/roll and

> > butter/tapioca pudding/juice and iced tea. Really

> > made me hungry! He had a little difficulty in

> > swallowing but did when I gave him sips of liquid.

> > He

> > can't always remember how to suck on the straw.

> >

> > Here's my predicament. This is the second time he

> > has

> > been revived at the hospital. Both of these

> times,

> > I

> > know he wouldn't have made it if not for that. I

> do

> > not want to take him back to the NH, because I

> think

> > this will happen again. I know it's just a matter

> > of

> > time before the antibiotics no longer will work,

> > too.

> > I'm not sure the NH is doing what they can,

> possibly

> > because they know his case is eventually hopeless,

> > so

> > why worry! Am I paranoid or what? I talked to

> > Hospice, and they will take him to their Hospice

> > House, but it will be for " end " care. They will

> not

>

=== message truncated ===

________________________________________________________________________________\

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October 28, 2006

Hospice has been coming to the NH for him since late

August. Supposedly the nurse comes once or twice a

week, someone is supposed to come and bathe him on

days the NH doesn't, and a music therapist has been

there three or four times. They supplied him with an

air mattress, gerry chair, and some other things.

Still, the bed sore on his hip has gotten worse, and

the latest one (on the scrotum) developed. Nurse said

today that it's getting better. They are keeping

padded half-socks on his feet, as he moves them

continuously. I notices a little break on the skin on

his leg tonight, but didn't look serious. I will

watch that and let them know if it starts to look

worse. His blood tests did not show sepsis, but you

are right that they were taken after the antibiotic

was started. He's running fever again tonight, don't

know why. Much more restless and agitated as well.

There are a couple of other Hospice groups in town,

but I have heard that this one is the best by far. I

thought about calling them and getting their criteria,

and if they were more lenient, I may change. I

imagine they kind of have the same criteria, though.

--- l pratt wrote:

> Dear June - My prayers are with you and your

> husband. Although I've refused to put my mom in the

> hospital, she, too, has declined rapidly in a short

> while. Very stable until mid-June, when she

> developed multiple infections - now she is on what I

> imagine will be long-term hospice. May I ask if

> your husband is, indeed, " end-stage " or is some/most

> of what has happened so quickly due to the sepsis?

> That can make anyone appear totally demented and

> cause massive physical weakness. If you are seeing

> good improvement after even a few days on

> antibiotics, it will be easier to decide what's

> next. If you LO was hospitalized and taking

> antibiotics, the first or even second re-tests for

> infection can show negative, as the antibiotic still

> in the system masks the actual new or continuing

> infection. Also, some antibiotics help some

> infections, but may not be the best for that

> specific bug or sometimes aren't given for long

> enough. Infections, expecially in children, the

> elderly and other

> weak folks, are recurrent, relapsing or even

> chronic. And some meds, including some antibiotics,

> cause weakness and severe dementia-like behavior.

> It's so hard to determine what's due to the disease

> itself and what is underlying problems such as

> infection, poor O2 intake, etc.

>

> I totally agree about following your heart. I

> understand you do not want your LO back at the NH

> under the same conditions, as they don't sound very

> attentive. Does the hospice you called provide

> services at NHs? Many do. That would get your LO out

> of the general NH population and NH staff wouldn't

> follow him - hospice would. It can by law go on for

> years, as long as the person meets the criteria. It

> would address all his needs, and if he's pretty

> stable with quality of life still possible, they

> would follow your wishes, treat infections, broken

> bones, whatever - just as with anyone else. They

> send their own nurses, caregivers, doctors, even PT

> and OT - all the services a good NH should provide

> to all residents at all times. So if you don't want

> to transfer your husband, hospice in the NH would be

> one way to get good care. Most programs also bring

> hospice to your own home - with all the medical and

> non-medical services you could need. Is this hospice

> program the only

> one in your area? If there are others anywhere

> nearby, it would be worthwhile calling to know the

> scope of their programs and if they offer options

> other than their own facilities. You and your

> husband are in my prayers. Peace, Lin

>

> Dena LEAVITT wrote:

> Hi June

>

> My mother also deteriorated very rapidly as your

> husband did. My Mom was living on her own in May of

> 05, then hospitalized with dehydration and could no

> longer live alone. She moved in with me for 10

> months

> and then the NH. She started off on her own in her

> own

> home and in one year's time she was on Hospice and

> had

> not interests in anything and does not recognize

> anyone. She is totally incontinent and is spoon feed

> puree foods. It is a horrible thing to watch happen

> to

> someone you love. I think the reason my mom went

> down

> hill so fast was due to taking her off of Aricept to

> abruptly. It was 3 weeks later and she could only

> talk

> nonsense when she did choose to talk. Did you

> husband

> have any med changes that could have affected him

> like

> this? I was just curious?

>

> Dena

> Mother (84) End stages LBD

>

> --- June Christensen

> wrote:

>

> > My husband started with short-term memory loss,

> and

> > in

> > 1999 at the age of 69, he was placed on Aricept.

> It

> > seemed to hold it at bay for three-four years. He

> > started on Lexapro, later changed to Celexa, in

> > 2003.

> > He worked through Jan of 2004. Broke shoulder in

> > March 2005 and wrist in Nov. 2005, both of which

> > sent

> > him downhill more rapidly. Entered the NH in

> > February

> > this year after a hospital stay for infection.

> > Likely

> > UTI, but the antibiotic must have taken effect

> > before

> > they determined for sure exactly what it was. Very

> > combative, weak, could not stand without help, and

> > they told me I wouldn't be able to take care of

> him

> > at

> > home. By then, hallucinations, some delusion,

> > extreme

> > rigidity, Lewy lean, bent-over walking gait,

> > starting

> > to have urinary and bowel problems but not

> > completely

> > incontinent.

> >

> > A year ago now, he was raking the lawn, hauling

> > trash

> > out to the curb, helping with dishes, some

> vacuuming

> > and dusting, etc. Now, one year later, he is

> > completely helpless, incontinent, has to be fed,

> > takes

> > 2-3 aides to move him and on and on. They just

> > started using the lift at the NH a few weeks ago.

> > He

> > now recognizes no one, even me, barely knows his

> > name,

> > doesn't know his parents or brothers/sisters'

> names.

> >

> > He is not interested in TV, reading, games,

> nothing.

> >

> > I believe he has lost a lot of sight, because I

> > asked

> > him today if he could see me, and he said he

> > couldn't.

> > He barely can open his eyes, and when he does,

> it's

> > like a blind person looking.

> >

> > I cannot believe the deterioration in a year's

> time.

> > He has never been formally diagnosed as LBD,

> > although

> > two doctors have agreed with me that he probably

> has

> > it.

> >

> > --- Sandie and Pearce

> > wrote:

> >

> > > June-

> > >

> > > Trust your heart. I think it is a good idea that

> > > you

> > > asked Hospice to get involved also. Please

> remind

> > > us how long your husband has struggled with LBD.

> > >

> > > Our hearts go out to you-

> > >

> > > Sandie and

> > > Des Moines, IA

> > > (had the pouring rain through the night, high of

> > 45

> > > today)

> > >

> > > -- My Husband's Condition

> > >

> > > Yesterday afternoon when I went to the NH, I

> found

> > > my

> > > husband in very bad shape. He had not been good

> > > since

> > > Sunday, the last time he ate anything. I had fed

> > > him

> > > most of his dinner. Monday, he did not eat

> > > breakfast,

> > > lunch, and his head was hanging forward so much,

> I

> > > couldn't get any dinner in him. It just came

> back

> > > out.

> > > He did not eat breakfast Tues, and they didn't

> > > think

> > > he ate lunch either. Very unresponsive to

> > > everything

> > > but pain, fever of 100+ (axillary and his normal

> > > temp

> > > is 97.6), rapid somewhat irregular heartbeat.

> > They

> > > had taken a chest x-ray and done a UA and CBC on

>

=== message truncated ===

________________________________________________________________________________\

____

Everyone is raving about the all-new Yahoo! Mail

(http://advision.webevents.yahoo.com/mailbeta/)

October 28, 2006

Donna, I did go into the Hospice site, and found that

one of the diseases names is End Stage Neurological

Disease, which he certainly has. Criteria are:

Progressive or disabling dementia (he has); Level 7-C

on FAST scale (unable to ambulate, communicate

intelligently, incontinent) (he has all three);

History of frequent infections (almost continuous

since February); Client/family do not want treatment

of infections or feeding tubes (I have now agred to

that); If feeding tube in place, client must have

other life-limiting illness which contributes to a

poor prognosis (he doesn't); and significant weight

loss over past several months (he weighed 183 in

January, now 160).

I really don't see where they are getting that he does

not meet the criteria. I think he most certainly

does, and I am going to take this list to them next

week and see what they say. I don't call the above

" routine care. "

I wonder if my taking him to the hospital in the last

two incidents is the reason they are making that

decision. I have told them I would sign the DNR if he

went there. I have felt all along after they told me

this that something wasn't quite right.

I am also going to ask the doctor to write a letter

telling what his problems are and what caused them,

which I will take to the NH as proof of their neglect.

--- Donna Mido wrote:

> June,

>

> In the links at the bottom of this message, if you

> click on it, I think has included some of

> the Hospice information.

>

> If he isn't eating or walking those are the two

> major things that qualify him for Hospice. And that

> Medicare does pay everything.

>

> Imogene is right he can stay on Hospice unless or

> until he is " doing better. " Then they sometimes

> take him off. But he can can go off and on at least

> 3 times and I don't know if that is 3 times a year

> or three times in the life of Hospice.

>

> You may want to check out the Link.

>

> Hugs,

>

> Donna R

>

> Caregave for Mom (after I brought her from WI to MI)

> for 3 years and 4th year in a nh.

> She was almost 89 when she died in '02. No dx other

> than mine.

>

> My Husband's Condition

> >

> > Yesterday afternoon when I went to the NH, I found

> > my

> > husband in very bad shape. He had not been good

> > since

> > Sunday, the last time he ate anything. I had fed

> > him

> > most of his dinner. Monday, he did not eat

> > breakfast,

> > lunch, and his head was hanging forward so much, I

> > couldn't get any dinner in him. It just came back

> > out.

> > He did not eat breakfast Tues, and they didn't

> > think

> > he ate lunch either. Very unresponsive to

> > everything

> > but pain, fever of 100+ (axillary and his normal

> > temp

> > is 97.6), rapid somewhat irregular heartbeat.

> They

> > had taken a chest x-ray and done a UA and CBC on

> > Tuesday, all of which they said were negative.

> > They,

> > in essence, said he was " code, " and led me to

> > believe

> > he was in the last stages. I really believe he

> > would

> > have been had I not elected to take him to the ER.

>

> > I

> > did check him for mottling and found none. They

> > also

> > told me he had lost 10# since his hospital stay

> from

> > Oct. 5-9. He was good the first day back from the

> > hosp. but had deteriorated daily. I made the

> > decision

> > to call the ambulance and have him taken to the

> > hospital. I tried to get a direct admittance

> rather

> > that the ER situation, but since the NH said all

> his

> > tests were negative, we had to go to ER. Another

> > five

> > hours spent there, at which time they retested

> > urine,

> > blood, chest x-ray, EKG. He was really out of it,

> > again severely dehydrated, and unresponsive to

> > anything but pain when they moved him or jabbed

> him

> > for the blood tests. When they finally got all

> the

> > results, they said he had a massive infection

> > somewhere, probably UTI, with possible sepsis; wbc

> > was

> > 26,000; 10,000 is high; and severe dehydration.

> > Started antibiotic IV as well as rehydration. His

> > bed

> > sore is worse again. This is just three weeks

> > tomorrow from when he went to the hospital before

> > with

> > UTI, asp. pneu. and severe dehydration.

> >

> > This afternoon, he was better; was talking

> garbled,

> > but awake for awhile. They gave him a breathing

> > treatment, put an air mattress on the bed, took

> > several more vials of blood for culture testing,

> and

> > he went to sleep. I had a couple of things to do

> so

> > left about 4:15 and then came back at supper time.

>

> > He

> > was asleep but was able to wake up to eat and ate

> > fairly well. The food is much, much better than

> the

> > NH. Turkey/dressing/gravy/green beans/roll and

> > butter/tapioca pudding/juice and iced tea. Really

> > made me hungry! He had a little difficulty in

> > swallowing but did when I gave him sips of liquid.

>

> > He

> > can't always remember how to suck on the straw.

> >

> > Here's my predicament. This is the second time he

>

=== message truncated ===

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October 28, 2006

Hi June-

A definite struggle you are having with figuring

out what is causing your husbands fever and

all else he is going through. I used to give my

dad's changes a good 2 weeks or so...if he

changed back to his normal within those 2 weeks

I knew it was just a fluctuation. If dad didn't go

back to his normal I knew it was a progression.

He didn't have fevers with his changes and

progression though.

We are supposed to have a high of 70 tomorrow

as well. Really looking forward to getting out and

mulching leaves...we have over 30 trees that

have given us tons of leaves already this fall.

Brings a new meaning to...FALL! :-))

Sandie

-- My Husband's Condition

> >

> > Yesterday afternoon when I went to the NH, I found

> > my

> > husband in very bad shape. He had not been good

> > since

> > Sunday, the last time he ate anything. I had fed

> > him

> > most of his dinner. Monday, he did not eat

> > breakfast,

> > lunch, and his head was hanging forward so much, I

> > couldn't get any dinner in him. It just came back

> > out.

> > He did not eat breakfast Tues, and they didn't

> > think

> > he ate lunch either. Very unresponsive to

> > everything

> > but pain, fever of 100+ (axillary and his normal

> > temp

> > is 97.6), rapid somewhat irregular heartbeat.

> They

> > had taken a chest x-ray and done a UA and CBC on

> > Tuesday, all of which they said were negative.

> > They,

> > in essence, said he was " code, " and led me to

> > believe

> > he was in the last stages. I really believe he

> > would

> > have been had I not elected to take him to the ER.

> > I

> > did check him for mottling and found none. They

> > also

> > told me he had lost 10# since his hospital stay

> from

> > Oct. 5-9. He was good the first day back from the

> > hosp. but had deteriorated daily. I made the

> > decision

> > to call the ambulance and have him taken to the

> > hospital. I tried to get a direct admittance

> rather

> > that the ER situation, but since the NH said all

> his

> > tests were negative, we had to go to ER. Another

> > five

> > hours spent there, at which time they retested

> > urine,

> > blood, chest x-ray, EKG. He was really out of it,

> > again severely dehydrated, and unresponsive to

> > anything but pain when they moved him or jabbed

> him

> > for the blood tests. When they finally got all

> the

> > results, they said he had a massive infection

> > somewhere, probably UTI, with possible sepsis; wbc

> > was

> > 26,000; 10,000 is high; and severe dehydration.

> > Started antibiotic IV as well as rehydration. His

> > bed

> > sore is worse again. This is just three weeks

> > tomorrow from when he went to the hospital before

> > with

> > UTI, asp. pneu. and severe dehydration.

> >

> > This afternoon, he was better; was talking

> garbled,

> > but awake for awhile. They gave him a breathing

> > treatment, put an air mattress on the bed, took

> > several more vials of blood for culture testing,

> and

> > he went to sleep. I had a couple of things to do

> so

> > left about 4:15 and then came back at supper time.

> > He

> > was asleep but was able to wake up to eat and ate

> > fairly well. The food is much, much better than

> the

> > NH. Turkey/dressing/gravy/green beans/roll and

> > butter/tapioca pudding/juice and iced tea. Really

> > made me hungry! He had a little difficulty in

> > swallowing but did when I gave him sips of liquid.

> > He

> > can't always remember how to suck on the straw.

> >

> > Here's my predicament. This is the second time he

> > has

> > been revived at the hospital. Both of these

> times,

> > I

> > know he wouldn't have made it if not for that. I

> do

> > not want to take him back to the NH, because I

> think

> > this will happen again. I know it's just a matter

> > of

> > time before the antibiotics no longer will work,

> > too.

> > I'm not sure the NH is doing what they can,

> possibly

> > because they know his case is eventually hopeless,

> > so

> > why worry! Am I paranoid or what? I talked to

> > Hospice, and they will take him to their Hospice

> > House, but it will be for " end " care. They will

> not

>

=== message truncated ===

_____________________________________________________________________________

______

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Welcome to LBDcaregivers.

October 29, 2006

June,

I really think he qualifies for hospice by everything you are saying. Ask your

MD to write a letter saying he should be in Hospice. That should also carry

weight.

And they can't ignore MD's orders.

I don't know exactly where you are located, but with his weight, not walking,

eating problems, talking problems, incontinent, I really don't understand. You

may need to push it a bit. I would make them tell me why he isn't being

considered. I don't think because it is regular care, because that is all he

gets in hospice anyway.

I also don't think it is because you took him to the hospital. You said you are

willing to sign a " NR " What they give is " comfort care " and that is what I hear

you asking.

If he is in the last stages, (when Mom was no one told me) you can get all sorts

of info and help from Hospice SW. And he may be, with all the breaking down of

the skin and other things you have described.

I would encourage you to do what you said and take that list in and ask them

what the problem is that he can't be in Hospice.

Lots of prayers and good thoughts coming your way. I will go in the check about

the photos.

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

My Husband's Condition

> >

> > Yesterday afternoon when I went to the NH, I found

> > my

> > husband in very bad shape. He had not been good

> > since

> > Sunday, the last time he ate anything. I had fed

> > him

> > most of his dinner. Monday, he did not eat

> > breakfast,

> > lunch, and his head was hanging forward so much, I

> > couldn't get any dinner in him. It just came back

> > out.

> > He did not eat breakfast Tues, and they didn't

> > think

> > he ate lunch either. Very unresponsive to

> > everything

> > but pain, fever of 100+ (axillary and his normal

> > temp

> > is 97.6), rapid somewhat irregular heartbeat.

> They

> > had taken a chest x-ray and done a UA and CBC on

> > Tuesday, all of which they said were negative.

> > They,

> > in essence, said he was " code, " and led me to

> > believe

> > he was in the last stages. I really believe he

> > would

> > have been had I not elected to take him to the ER.

>

> > I

> > did check him for mottling and found none. They

> > also

> > told me he had lost 10# since his hospital stay

> from

> > Oct. 5-9. He was good the first day back from the

> > hosp. but had deteriorated daily. I made the

> > decision

> > to call the ambulance and have him taken to the

> > hospital. I tried to get a direct admittance

> rather

> > that the ER situation, but since the NH said all

> his

> > tests were negative, we had to go to ER. Another

> > five

> > hours spent there, at which time they retested

> > urine,

> > blood, chest x-ray, EKG. He was really out of it,

> > again severely dehydrated, and unresponsive to

> > anything but pain when they moved him or jabbed

> him

> > for the blood tests. When they finally got all

> the

> > results, they said he had a massive infection

> > somewhere, probably UTI, with possible sepsis; wbc

> > was

> > 26,000; 10,000 is high; and severe dehydration.

> > Started antibiotic IV as well as rehydration. His

> > bed

> > sore is worse again. This is just three weeks

> > tomorrow from when he went to the hospital before

> > with

> > UTI, asp. pneu. and severe dehydration.

> >

> > This afternoon, he was better; was talking

> garbled,

> > but awake for awhile. They gave him a breathing

> > treatment, put an air mattress on the bed, took

> > several more vials of blood for culture testing,

> and

> > he went to sleep. I had a couple of things to do

> so

> > left about 4:15 and then came back at supper time.

>

> > He

> > was asleep but was able to wake up to eat and ate

> > fairly well. The food is much, much better than

> the

> > NH. Turkey/dressing/gravy/green beans/roll and

> > butter/tapioca pudding/juice and iced tea. Really

> > made me hungry! He had a little difficulty in

> > swallowing but did when I gave him sips of liquid.

>

> > He

> > can't always remember how to suck on the straw.

> >

> > Here's my predicament. This is the second time he

>

=== message truncated ===

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October 29, 2006

I'd be curious why he's eligible for Hospice to visit the NH, but not

for staying in the Hospice House...

October 29, 2006

That's what I wondered, too, except that the cost of

staying at the house is much more expensive.

--- wrote:

> I'd be curious why he's eligible for Hospice to

> visit the NH, but not

> for staying in the Hospice House...

>

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Re: June /My Husband's Condition

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