My Father went from dx of LBD and passed within one week

[Guest guest]

Alas the entire struggle was not that short. We noticed in 2000 some

cognitive changes, but found no real reason why they were occuring.

Add in poor (wild) responses to anesthesia, some doctors never saw a

true picture of dad when he was " normal " . We just saw some confusion

that wasn't really explainable. Plus he had the things that a 70+year

old man has, heart ailments, diabetes, etc. and narrowing things down

gets harder and harder to accomplish. And so with time, his abilities

worsened, and we had little explanation.

I am a former Nursing Facility Social Worker, as well as a Area Agency

on Aging Care Manager in my work history, so I am readily familiar

with a lot of the entities that we had to deal with. My mother called

me May 1, 05 and said that she had had enough and Dad needed to go

somewhere. My brother couldn't handle him in a safe fashion either.

So, Monday morning I made the calls and we took him to a NF, while

awaiting an appt with a neurologist. He ended up in the hospital

before that appointment arrived, but we had a neuro consult there. We

discovered a stroke, which later a second opinion stated was several

smaller strokes, and also likely Parkinson's Disease, but since Dad

did not respond with shaking, it had been overlooked.

So we tried the meds in varying strengths and varieties, always with a

little improvement, and hope for help with therapy, to no avail. One

step forward, multiple steps back. In July, he walked from the lobby

of the doctor's office to the patient room, but when the doctor wanted

him to stay longer for more therapy, it was like I saw the hope fade

completely in about 5 seconds from his face. I think he gave up at

that very moment. Positive ground was hard to come by after that.

The staff started occasionally using the Chorus lift, then it became

more of a regularity, and by the end of October, we were using a full

lift with a sling.

We got our second opinion in mid October from another nearby

neurologist who tried a different, stronger dose of Sinemet, which

unfortunately snowed him. Either just prior to this or during this

dosage change, he acquired a head cold, and the " snowed " state, in my

opinion, deceived us in seeing how severe it actually was.

Antibiotics were started, but unfortunately, cultures were not done -

as they are not commonly done for colds. Terefore when ended up in the

hospital we were in for a shock when he was MRSA positive and we had

to gown, glove and mask up to go in to see him, things were not going

well. The new neurologist told me on Halloween that she felt Dad has

Diffuse Lewy Body Disease, and that his Dad decline would go faster in

the next few months. I asked about Hospice, and she agreed that we

should explore Hospice, and I assured her that we were seeing the

internist the next day and I would explore it further once I talked

with him. By Wednesday Dad was unresponsive and breathing was labored

@ the NF. All of the antibiotics were doing was prolonging the

inevitable, and by Sunday morning, we asked the hospital staff to go

to comfort measures only. By 2am Monday morning he was gone.

My brothers had a hard time accepting all of this. I have seen more

of it in my profession, so I was able to explain it a little, but then

when I would turn around and be the daughter, I'd be crying as hard as

they were, and wanting to do all that we could for him. It takes

courage to let someone go when they have been lingering, but that is

what we have to do sometimes when we love someone. One brother said

that he thought the visitation and funeral would be harder than the

hospital and NF, but he found it in the end to be easier, knowing that

he is resting now and comfortable. The Lord does work in mysterious

ways. I had been praying all summer that if Dad could get better, to

please allow it, if not, to have the Lord take him, because Dad would

want it that way. Farmers like him don't like to be cooped up inside

like this. Guess my prayer was answered.

Anyway. Halloween was the day I found this website, while pouring

through research and sites for LBD, and I will admit that I hadn't

even had time to look at this email address until today, so I was

surprised to see all of these comments in response to each other. I

had forgotten that I had even done that, I guess. I am glad to know

that this group exists, and if I have anything to offer, I will be

happy to do so. Thanks everyone.

Renae

Shickley, Nebraska

[Guest guest]

Dear Renae,

I just wanted to express my condolences to you and your family on the

passing of your dad. No matter how short the time was since your Dad actually

received the correct diagnosis, it has been a long haul for your family. My

thoughts and prayers are with you and your family. Please let us know how you

are doing as you have time.

Hugs,

Piper

[Guest guest]

Hi Renae

I am sorry to hear of your Dad's passing. Farmer's certainly like

the open land. My condolences to you, your Mother and brother's.

, borough, ON

>

> Alas the entire struggle was not that short. We noticed in 2000

some

> cognitive changes, but found no real reason why they were occuring.

> Add in poor (wild) responses to anesthesia, some doctors never saw a

> true picture of dad when he was " normal " . We just saw some

confusion

> that wasn't really explainable. Plus he had the things that a

70+year

> old man has, heart ailments, diabetes, etc. and narrowing things

down

> gets harder and harder to accomplish. And so with time, his

abilities

> worsened, and we had little explanation.

> I am a former Nursing Facility Social Worker, as well as a Area

Agency

> on Aging Care Manager in my work history, so I am readily familiar

> with a lot of the entities that we had to deal with. My mother

called

> me May 1, 05 and said that she had had enough and Dad needed to go

> somewhere. My brother couldn't handle him in a safe fashion

either.

> So, Monday morning I made the calls and we took him to a NF, while

> awaiting an appt with a neurologist. He ended up in the hospital

> before that appointment arrived, but we had a neuro consult there.

We

> discovered a stroke, which later a second opinion stated was several

> smaller strokes, and also likely Parkinson's Disease, but since Dad

> did not respond with shaking, it had been overlooked.

> So we tried the meds in varying strengths and varieties, always

with a

> little improvement, and hope for help with therapy, to no avail.

One

> step forward, multiple steps back. In July, he walked from the

lobby

> of the doctor's office to the patient room, but when the doctor

wanted

> him to stay longer for more therapy, it was like I saw the hope fade

> completely in about 5 seconds from his face. I think he gave up at

> that very moment. Positive ground was hard to come by after that.

> The staff started occasionally using the Chorus lift, then it became

> more of a regularity, and by the end of October, we were using a

full

> lift with a sling.

> We got our second opinion in mid October from another nearby

> neurologist who tried a different, stronger dose of Sinemet, which

> unfortunately snowed him. Either just prior to this or during this

> dosage change, he acquired a head cold, and the " snowed " state, in

my

> opinion, deceived us in seeing how severe it actually was.

> Antibiotics were started, but unfortunately, cultures were not

done -

> as they are not commonly done for colds. Terefore when ended up in

the

> hospital we were in for a shock when he was MRSA positive and we

had

> to gown, glove and mask up to go in to see him, things were not

going

> well. The new neurologist told me on Halloween that she felt Dad

has

> Diffuse Lewy Body Disease, and that his Dad decline would go faster

in

> the next few months. I asked about Hospice, and she agreed that we

> should explore Hospice, and I assured her that we were seeing the

> internist the next day and I would explore it further once I talked

> with him. By Wednesday Dad was unresponsive and breathing was

labored

> @ the NF. All of the antibiotics were doing was prolonging the

> inevitable, and by Sunday morning, we asked the hospital staff to go

> to comfort measures only. By 2am Monday morning he was gone.

> My brothers had a hard time accepting all of this. I have seen more

> of it in my profession, so I was able to explain it a little, but

then

> when I would turn around and be the daughter, I'd be crying as hard

as

> they were, and wanting to do all that we could for him. It takes

> courage to let someone go when they have been lingering, but that is

> what we have to do sometimes when we love someone. One brother said

> that he thought the visitation and funeral would be harder than the

> hospital and NF, but he found it in the end to be easier, knowing

that

> he is resting now and comfortable. The Lord does work in mysterious

> ways. I had been praying all summer that if Dad could get better,

to

> please allow it, if not, to have the Lord take him, because Dad

would

> want it that way. Farmers like him don't like to be cooped up

inside

> like this. Guess my prayer was answered.

> Anyway. Halloween was the day I found this website, while pouring

> through research and sites for LBD, and I will admit that I hadn't

> even had time to look at this email address until today, so I was

> surprised to see all of these comments in response to each other. I

> had forgotten that I had even done that, I guess. I am glad to know

> that this group exists, and if I have anything to offer, I will be

> happy to do so. Thanks everyone.

> Renae

> Shickley, Nebraska

>

[Guest guest]

Renae-

Please accept our condolences in the passing of your dad.

Many prayers to you-

Sandie and

Des Moines, IA

-- My Father went from dx of LBD and passed within one

week

Alas the entire struggle was not that short. We noticed in 2000 some

cognitive changes, but found no real reason why they were occuring.

Add in poor (wild) responses to anesthesia, some doctors never saw a

true picture of dad when he was " normal " . We just saw some confusion

that wasn't really explainable. Plus he had the things that a 70+year

old man has, heart ailments, diabetes, etc. and narrowing things down

gets harder and harder to accomplish. And so with time, his abilities

worsened, and we had little explanation.

I am a former Nursing Facility Social Worker, as well as a Area Agency

on Aging Care Manager in my work history, so I am readily familiar

with a lot of the entities that we had to deal with. My mother called

me May 1, 05 and said that she had had enough and Dad needed to go

somewhere. My brother couldn't handle him in a safe fashion either.

So, Monday morning I made the calls and we took him to a NF, while

awaiting an appt with a neurologist. He ended up in the hospital

before that appointment arrived, but we had a neuro consult there. We

discovered a stroke, which later a second opinion stated was several

smaller strokes, and also likely Parkinson's Disease, but since Dad

did not respond with shaking, it had been overlooked.

So we tried the meds in varying strengths and varieties, always with a

little improvement, and hope for help with therapy, to no avail. One

step forward, multiple steps back. In July, he walked from the lobby

of the doctor's office to the patient room, but when the doctor wanted

him to stay longer for more therapy, it was like I saw the hope fade

completely in about 5 seconds from his face. I think he gave up at

that very moment. Positive ground was hard to come by after that.

The staff started occasionally using the Chorus lift, then it became

more of a regularity, and by the end of October, we were using a full

lift with a sling.

We got our second opinion in mid October from another nearby

neurologist who tried a different, stronger dose of Sinemet, which

unfortunately snowed him. Either just prior to this or during this

dosage change, he acquired a head cold, and the " snowed " state, in my

opinion, deceived us in seeing how severe it actually was.

Antibiotics were started, but unfortunately, cultures were not done -

as they are not commonly done for colds. Terefore when ended up in the

hospital we were in for a shock when he was MRSA positive and we had

to gown, glove and mask up to go in to see him, things were not going

well. The new neurologist told me on Halloween that she felt Dad has

Diffuse Lewy Body Disease, and that his Dad decline would go faster in

the next few months. I asked about Hospice, and she agreed that we

should explore Hospice, and I assured her that we were seeing the

internist the next day and I would explore it further once I talked

with him. By Wednesday Dad was unresponsive and breathing was labored

@ the NF. All of the antibiotics were doing was prolonging the

inevitable, and by Sunday morning, we asked the hospital staff to go

to comfort measures only. By 2am Monday morning he was gone.

My brothers had a hard time accepting all of this. I have seen more

of it in my profession, so I was able to explain it a little, but then

when I would turn around and be the daughter, I'd be crying as hard as

they were, and wanting to do all that we could for him. It takes

courage to let someone go when they have been lingering, but that is

what we have to do sometimes when we love someone. One brother said

that he thought the visitation and funeral would be harder than the

hospital and NF, but he found it in the end to be easier, knowing that

he is resting now and comfortable. The Lord does work in mysterious

ways. I had been praying all summer that if Dad could get better, to

please allow it, if not, to have the Lord take him, because Dad would

want it that way. Farmers like him don't like to be cooped up inside

like this. Guess my prayer was answered.

Anyway. Halloween was the day I found this website, while pouring

through research and sites for LBD, and I will admit that I hadn't

even had time to look at this email address until today, so I was

surprised to see all of these comments in response to each other. I

had forgotten that I had even done that, I guess. I am glad to know

that this group exists, and if I have anything to offer, I will be

happy to do so. Thanks everyone.

Renae

Shickley, Nebraska

[Guest guest]

Renae: You have my deep sympathies in all that you and your family has been

through. Please stay with our group and help us through this horrible

disease too. We need you and you need us.

Myrna in Missouri

Husband Jerry (age 70) diagnosed AD 1997 LBD 2004

[Guest guest]

Renae-

I am very sorry to hear of your Father's passing and my heart and prayers go out

to you and your family. I am glad that you found our support group even though

it was after your Dad's death. My Dad died on Sept. 11, 2005 four years after

his Dx of LBD. I found LBD Caregivers shortly before his death and I don't know

what I would have done without it. I follow the posts and try to give my

support, gained through my experiences, when I think it is needed. I know I

can still obtain help from the group when my grief gets the best of me. I did

not do well prior to the Thanksgiving holiday and am dreading Christmas, but I

know where I can get help and support-----HERE! Please do the same. We are

definitely here for each other.

Hugs,

My Father went from dx of LBD and passed within one

week

Alas the entire struggle was not that short. We noticed in 2000 some

cognitive changes, but found no real reason why they were occuring.

Add in poor (wild) responses to anesthesia, some doctors never saw a

true picture of dad when he was " normal " . We just saw some confusion

that wasn't really explainable. Plus he had the things that a 70+year

old man has, heart ailments, diabetes, etc. and narrowing things down

gets harder and harder to accomplish. And so with time, his abilities

worsened, and we had little explanation.

I am a former Nursing Facility Social Worker, as well as a Area Agency

on Aging Care Manager in my work history, so I am readily familiar

with a lot of the entities that we had to deal with. My mother called

me May 1, 05 and said that she had had enough and Dad needed to go

somewhere. My brother couldn't handle him in a safe fashion either.

So, Monday morning I made the calls and we took him to a NF, while

awaiting an appt with a neurologist. He ended up in the hospital

before that appointment arrived, but we had a neuro consult there. We

discovered a stroke, which later a second opinion stated was several

smaller strokes, and also likely Parkinson's Disease, but since Dad

did not respond with shaking, it had been overlooked.

So we tried the meds in varying strengths and varieties, always with a

little improvement, and hope for help with therapy, to no avail. One

step forward, multiple steps back. In July, he walked from the lobby

of the doctor's office to the patient room, but when the doctor wanted

him to stay longer for more therapy, it was like I saw the hope fade

completely in about 5 seconds from his face. I think he gave up at

that very moment. Positive ground was hard to come by after that.

The staff started occasionally using the Chorus lift, then it became

more of a regularity, and by the end of October, we were using a full

lift with a sling.

We got our second opinion in mid October from another nearby

neurologist who tried a different, stronger dose of Sinemet, which

unfortunately snowed him. Either just prior to this or during this

dosage change, he acquired a head cold, and the " snowed " state, in my

opinion, deceived us in seeing how severe it actually was.

Antibiotics were started, but unfortunately, cultures were not done -

as they are not commonly done for colds. Terefore when ended up in the

hospital we were in for a shock when he was MRSA positive and we had

to gown, glove and mask up to go in to see him, things were not going

well. The new neurologist told me on Halloween that she felt Dad has

Diffuse Lewy Body Disease, and that his Dad decline would go faster in

the next few months. I asked about Hospice, and she agreed that we

should explore Hospice, and I assured her that we were seeing the

internist the next day and I would explore it further once I talked

with him. By Wednesday Dad was unresponsive and breathing was labored

@ the NF. All of the antibiotics were doing was prolonging the

inevitable, and by Sunday morning, we asked the hospital staff to go

to comfort measures only. By 2am Monday morning he was gone.

My brothers had a hard time accepting all of this. I have seen more

of it in my profession, so I was able to explain it a little, but then

when I would turn around and be the daughter, I'd be crying as hard as

they were, and wanting to do all that we could for him. It takes

courage to let someone go when they have been lingering, but that is

what we have to do sometimes when we love someone. One brother said

that he thought the visitation and funeral would be harder than the

hospital and NF, but he found it in the end to be easier, knowing that

he is resting now and comfortable. The Lord does work in mysterious

ways. I had been praying all summer that if Dad could get better, to

please allow it, if not, to have the Lord take him, because Dad would

want it that way. Farmers like him don't like to be cooped up inside

like this. Guess my prayer was answered.

Anyway. Halloween was the day I found this website, while pouring

through research and sites for LBD, and I will admit that I hadn't

even had time to look at this email address until today, so I was

surprised to see all of these comments in response to each other. I

had forgotten that I had even done that, I guess. I am glad to know

that this group exists, and if I have anything to offer, I will be

happy to do so. Thanks everyone.

Renae

Shickley, Nebraska

Welcome to LBDcaregivers.

[Guest guest]

Sorry for your loss. I am glad you found us. Visit when you like as I am sure

you have lots of memories. Know that you did all you could, and now you need to

be careful to take care of yourself for awhile.

Kath in Toronto

renaequandt wrote:

Alas the entire struggle was not that short. We noticed in 2000 some

cognitive changes, but found no real reason why they were occuring.

Add in poor (wild) responses to anesthesia, some doctors never saw a

true picture of dad when he was " normal " . We just saw some confusion

that wasn't really explainable. Plus he had the things that a 70+year

old man has, heart ailments, diabetes, etc. and narrowing things down

gets harder and harder to accomplish. And so with time, his abilities

worsened, and we had little explanation.

I am a former Nursing Facility Social Worker, as well as a Area Agency

on Aging Care Manager in my work history, so I am readily familiar

with a lot of the entities that we had to deal with. My mother called

me May 1, 05 and said that she had had enough and Dad needed to go

somewhere. My brother couldn't handle him in a safe fashion either.

So, Monday morning I made the calls and we took him to a NF, while

awaiting an appt with a neurologist. He ended up in the hospital

before that appointment arrived, but we had a neuro consult there. We

discovered a stroke, which later a second opinion stated was several

smaller strokes, and also likely Parkinson's Disease, but since Dad

did not respond with shaking, it had been overlooked.

So we tried the meds in varying strengths and varieties, always with a

little improvement, and hope for help with therapy, to no avail. One

step forward, multiple steps back. In July, he walked from the lobby

of the doctor's office to the patient room, but when the doctor wanted

him to stay longer for more therapy, it was like I saw the hope fade

completely in about 5 seconds from his face. I think he gave up at

that very moment. Positive ground was hard to come by after that.

The staff started occasionally using the Chorus lift, then it became

more of a regularity, and by the end of October, we were using a full

lift with a sling.

We got our second opinion in mid October from another nearby

neurologist who tried a different, stronger dose of Sinemet, which

unfortunately snowed him. Either just prior to this or during this

dosage change, he acquired a head cold, and the " snowed " state, in my

opinion, deceived us in seeing how severe it actually was.

Antibiotics were started, but unfortunately, cultures were not done -

as they are not commonly done for colds. Terefore when ended up in the

hospital we were in for a shock when he was MRSA positive and we had

to gown, glove and mask up to go in to see him, things were not going

well. The new neurologist told me on Halloween that she felt Dad has

Diffuse Lewy Body Disease, and that his Dad decline would go faster in

the next few months. I asked about Hospice, and she agreed that we

should explore Hospice, and I assured her that we were seeing the

internist the next day and I would explore it further once I talked

with him. By Wednesday Dad was unresponsive and breathing was labored

@ the NF. All of the antibiotics were doing was prolonging the

inevitable, and by Sunday morning, we asked the hospital staff to go

to comfort measures only. By 2am Monday morning he was gone.

My brothers had a hard time accepting all of this. I have seen more

of it in my profession, so I was able to explain it a little, but then

when I would turn around and be the daughter, I'd be crying as hard as

they were, and wanting to do all that we could for him. It takes

courage to let someone go when they have been lingering, but that is

what we have to do sometimes when we love someone. One brother said

that he thought the visitation and funeral would be harder than the

hospital and NF, but he found it in the end to be easier, knowing that

he is resting now and comfortable. The Lord does work in mysterious

ways. I had been praying all summer that if Dad could get better, to

please allow it, if not, to have the Lord take him, because Dad would

want it that way. Farmers like him don't like to be cooped up inside

like this. Guess my prayer was answered.

Anyway. Halloween was the day I found this website, while pouring

through research and sites for LBD, and I will admit that I hadn't

even had time to look at this email address until today, so I was

surprised to see all of these comments in response to each other. I

had forgotten that I had even done that, I guess. I am glad to know

that this group exists, and if I have anything to offer, I will be

happy to do so. Thanks everyone.

Renae

Shickley, Nebraska

Welcome to LBDcaregivers.

[Guest guest]

renae, i am sorry for the loss of your dad, that was definetly a short

diagnonis time. my dad also passed recently 9/25/-5 and i miss him terribly

even thought i know he is better off than he was, good luck and hugs sharon

m

-- My Father went from dx of LBD and passed within one

week

Alas the entire struggle was not that short. We noticed in 2000 some

cognitive changes, but found no real reason why they were occuring.

Add in poor (wild) responses to anesthesia, some doctors never saw a

true picture of dad when he was " normal " . We just saw some confusion

that wasn't really explainable. Plus he had the things that a 70+year

old man has, heart ailments, diabetes, etc. and narrowing things down

gets harder and harder to accomplish. And so with time, his abilities

worsened, and we had little explanation.

I am a former Nursing Facility Social Worker, as well as a Area Agency

on Aging Care Manager in my work history, so I am readily familiar

with a lot of the entities that we had to deal with. My mother called

me May 1, 05 and said that she had had enough and Dad needed to go

somewhere. My brother couldn't handle him in a safe fashion either.

So, Monday morning I made the calls and we took him to a NF, while

awaiting an appt with a neurologist. He ended up in the hospital

before that appointment arrived, but we had a neuro consult there. We

discovered a stroke, which later a second opinion stated was several

smaller strokes, and also likely Parkinson's Disease, but since Dad

did not respond with shaking, it had been overlooked.

So we tried the meds in varying strengths and varieties, always with a

little improvement, and hope for help with therapy, to no avail. One

step forward, multiple steps back. In July, he walked from the lobby

of the doctor's office to the patient room, but when the doctor wanted

him to stay longer for more therapy, it was like I saw the hope fade

completely in about 5 seconds from his face. I think he gave up at

that very moment. Positive ground was hard to come by after that.

The staff started occasionally using the Chorus lift, then it became

more of a regularity, and by the end of October, we were using a full

lift with a sling.

We got our second opinion in mid October from another nearby

neurologist who tried a different, stronger dose of Sinemet, which

unfortunately snowed him. Either just prior to this or during this

dosage change, he acquired a head cold, and the " snowed " state, in my

opinion, deceived us in seeing how severe it actually was.

Antibiotics were started, but unfortunately, cultures were not done -

as they are not commonly done for colds. Terefore when ended up in the

hospital we were in for a shock when he was MRSA positive and we had

to gown, glove and mask up to go in to see him, things were not going

well. The new neurologist told me on Halloween that she felt Dad has

Diffuse Lewy Body Disease, and that his Dad decline would go faster in

the next few months. I asked about Hospice, and she agreed that we

should explore Hospice, and I assured her that we were seeing the

internist the next day and I would explore it further once I talked

with him. By Wednesday Dad was unresponsive and breathing was labored

@ the NF. All of the antibiotics were doing was prolonging the

inevitable, and by Sunday morning, we asked the hospital staff to go

to comfort measures only. By 2am Monday morning he was gone.

My brothers had a hard time accepting all of this. I have seen more

of it in my profession, so I was able to explain it a little, but then

when I would turn around and be the daughter, I'd be crying as hard as

they were, and wanting to do all that we could for him. It takes

courage to let someone go when they have been lingering, but that is

what we have to do sometimes when we love someone. One brother said

that he thought the visitation and funeral would be harder than the

hospital and NF, but he found it in the end to be easier, knowing that

he is resting now and comfortable. The Lord does work in mysterious

ways. I had been praying all summer that if Dad could get better, to

please allow it, if not, to have the Lord take him, because Dad would

want it that way. Farmers like him don't like to be cooped up inside

like this. Guess my prayer was answered.

Anyway. Halloween was the day I found this website, while pouring

through research and sites for LBD, and I will admit that I hadn't

even had time to look at this email address until today, so I was

surprised to see all of these comments in response to each other. I

had forgotten that I had even done that, I guess. I am glad to know

that this group exists, and if I have anything to offer, I will be

happy to do so. Thanks everyone.

Renae

Shickley, Nebraska

[Guest guest]

Renae,

I'm so sorry for the loss of your dear father. Thank you for sharing your

experience with us. It was a blessing he went so quickly just as he would have

wanted. Please stay and share when you can.

Patty in Oregon

My Father went from dx of LBD and passed within one

week

Alas the entire struggle was not that short. We noticed in 2000 some

cognitive changes, but found no real reason why they were occuring.

Add in poor (wild) responses to anesthesia, some doctors never saw a

true picture of dad when he was " normal " . We just saw some confusion

that wasn't really explainable. Plus he had the things that a 70+year

old man has, heart ailments, diabetes, etc. and narrowing things down

gets harder and harder to accomplish. And so with time, his abilities

worsened, and we had little explanation.

I am a former Nursing Facility Social Worker, as well as a Area Agency

on Aging Care Manager in my work history, so I am readily familiar

with a lot of the entities that we had to deal with. My mother called

me May 1, 05 and said that she had had enough and Dad needed to go

somewhere. My brother couldn't handle him in a safe fashion either.

So, Monday morning I made the calls and we took him to a NF, while

awaiting an appt with a neurologist. He ended up in the hospital

before that appointment arrived, but we had a neuro consult there. We

discovered a stroke, which later a second opinion stated was several

smaller strokes, and also likely Parkinson's Disease, but since Dad

did not respond with shaking, it had been overlooked.

So we tried the meds in varying strengths and varieties, always with a

little improvement, and hope for help with therapy, to no avail. One

step forward, multiple steps back. In July, he walked from the lobby

of the doctor's office to the patient room, but when the doctor wanted

him to stay longer for more therapy, it was like I saw the hope fade

completely in about 5 seconds from his face. I think he gave up at

that very moment. Positive ground was hard to come by after that.

The staff started occasionally using the Chorus lift, then it became

more of a regularity, and by the end of October, we were using a full

lift with a sling.

We got our second opinion in mid October from another nearby

neurologist who tried a different, stronger dose of Sinemet, which

unfortunately snowed him. Either just prior to this or during this

dosage change, he acquired a head cold, and the " snowed " state, in my

opinion, deceived us in seeing how severe it actually was.

Antibiotics were started, but unfortunately, cultures were not done -

as they are not commonly done for colds. Terefore when ended up in the

hospital we were in for a shock when he was MRSA positive and we had

to gown, glove and mask up to go in to see him, things were not going

well. The new neurologist told me on Halloween that she felt Dad has

Diffuse Lewy Body Disease, and that his Dad decline would go faster in

the next few months. I asked about Hospice, and she agreed that we

should explore Hospice, and I assured her that we were seeing the

internist the next day and I would explore it further once I talked

with him. By Wednesday Dad was unresponsive and breathing was labored

@ the NF. All of the antibiotics were doing was prolonging the

inevitable, and by Sunday morning, we asked the hospital staff to go

to comfort measures only. By 2am Monday morning he was gone.

My brothers had a hard time accepting all of this. I have seen more

of it in my profession, so I was able to explain it a little, but then

when I would turn around and be the daughter, I'd be crying as hard as

they were, and wanting to do all that we could for him. It takes

courage to let someone go when they have been lingering, but that is

what we have to do sometimes when we love someone. One brother said

that he thought the visitation and funeral would be harder than the

hospital and NF, but he found it in the end to be easier, knowing that

he is resting now and comfortable. The Lord does work in mysterious

ways. I had been praying all summer that if Dad could get better, to

please allow it, if not, to have the Lord take him, because Dad would

want it that way. Farmers like him don't like to be cooped up inside

like this. Guess my prayer was answered.

Anyway. Halloween was the day I found this website, while pouring

through research and sites for LBD, and I will admit that I hadn't

even had time to look at this email address until today, so I was

surprised to see all of these comments in response to each other. I

had forgotten that I had even done that, I guess. I am glad to know

that this group exists, and if I have anything to offer, I will be

happy to do so. Thanks everyone.

Renae

Shickley, Nebraska

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