Re: Our experience with LBD

[Guest guest]

I don't know what to say. It sounds like your dad progressed

through the final stages pretty quickly in the last year. I hope that

your good memories of your dad's life will soon replace your sense of

loss...thank you so much for sharing this with us, as we will all face

the same, if we haven't already...

God be with you and your family today and in the coming days...

--

His,

Sherry

daughter/guardian of , dx 4/09 with LBD, living in a nearby NH

> I have not posted anything, but have been " lurking " for several months.

> The information i have been reading here has been very helpful.

>

> My dad had multiple myeloma cancer as well as LBD. His battle had been

> a roller coaster. There were times he was physically and cognitively

> doing very well, and other times when he had " episodes " of agitation,

> restlessness, hallucinations etc etc. More recently He had been doing

> very well, walking every day, eating well, and engaging with the

> family, even riding in the car and doing short errands with us. He had

> been steadily declining for the last year in spite our best efforts, so

> were very please to see him doing much better. He very suddenly took a

> sharp turn for the worst. There was no obvious explainable reason. We

> took him to see both the PCP, senior neurological specialist, and

> oncologist. No one could explain his sudden turn. They did every test

> imaginable.

>

> Within a few days he completely stopped eating, and in a few more

> stopped drinking. He had began falling again during this time. We

> promised my dad a long time ago we would not put him in a nursing home,

> so we hired a hospice nurse to help us. We took shifts sleeping in his

> room so we could hear if he tried to get up. The hospice nurse told us

> he was " in the active phase of dying " . This process can take anywhere

> from 1-2 months she told us. Of course we mentioned how well he had

> been doing just a few weeks prior. She said that was very normal. They

> often get a surge of energy and virtually resume normal life, but it

> only last a few day or weeks at the most. It lasted two weeks for him.

> We contacted two more hospice agencies for second opinions. They said

> the same thing. Within 3 days of contacting the first hospice person he

> started in with the infamous " death rattle " . The nurse gave him meds to

> help him.....atropine I think......we also started to notice that his

> hands and feet were very mottled and gray/blue. He had been refusing

> food for 2 days, and on the third day, refused water. We tried swabs

> with Gatorade as his diaper was completely dry. He would spit out the

> swab and become agitated. His body temp fluctuated between feverish and

> cold. The nurse said that was a very normal process of his body

> shutting down. He died 48 hours later. We were able to honor our

> promise to him. He died with his whole family around him. My husband

> read and sang to him, my mom held his hands, my teens sat by his side

> with a cold cloth on his face (he had always loved that), and I sat

> nursing my newborn. It was very peaceful.

>

> His funeral is today. He will be missed, but we are very happy for him.

> He is cancer free, pain free, and watching us from heaven.

>

> I have heard many similar stories. We tried to keep fighting for him,

> but in the last few days, it was obvious he was done. He was ready to

> go " home " . He had fought cancer and LBD well, but he was obviously

> done. He had seen all my kids birthdays (they are all within 6 weeks of

> each other), seen the new baby, saw my oldest graduate, saw the full

> length play my teens had been working on for 8 months, and was all

> done.

>

> We are very happy that he will suffer no longer.

[Guest guest]

,

My condolences on your loss.

Robin

>

> I have not posted anything, but have been " lurking " for several months.

> The information i have been reading here has been very helpful.

>

> My dad had multiple myeloma cancer as well as LBD. His battle had been

> a roller coaster. There were times he was physically and cognitively

> doing very well, and other times when he had " episodes " of agitation,

> restlessness, hallucinations etc etc. More recently He had been doing

> very well, walking every day, eating well, and engaging with the

> family, even riding in the car and doing short errands with us. He had

> been steadily declining for the last year in spite our best efforts, so

> were very please to see him doing much better. He very suddenly took a

> sharp turn for the worst. There was no obvious explainable reason. We

> took him to see both the PCP, senior neurological specialist, and

> oncologist. No one could explain his sudden turn. They did every test

> imaginable.

>

> Within a few days he completely stopped eating, and in a few more

> stopped drinking. He had began falling again during this time. We

> promised my dad a long time ago we would not put him in a nursing home,

> so we hired a hospice nurse to help us. We took shifts sleeping in his

> room so we could hear if he tried to get up. The hospice nurse told us

> he was " in the active phase of dying " . This process can take anywhere

> from 1-2 months she told us. Of course we mentioned how well he had

> been doing just a few weeks prior. She said that was very normal. They

> often get a surge of energy and virtually resume normal life, but it

> only last a few day or weeks at the most. It lasted two weeks for him.

> We contacted two more hospice agencies for second opinions. They said

> the same thing. Within 3 days of contacting the first hospice person he

> started in with the infamous " death rattle " . The nurse gave him meds to

> help him.....atropine I think......we also started to notice that his

> hands and feet were very mottled and gray/blue. He had been refusing

> food for 2 days, and on the third day, refused water. We tried swabs

> with Gatorade as his diaper was completely dry. He would spit out the

> swab and become agitated. His body temp fluctuated between feverish and

> cold. The nurse said that was a very normal process of his body

> shutting down. He died 48 hours later. We were able to honor our

> promise to him. He died with his whole family around him. My husband

> read and sang to him, my mom held his hands, my teens sat by his side

> with a cold cloth on his face (he had always loved that), and I sat

> nursing my newborn. It was very peaceful.

>

> His funeral is today. He will be missed, but we are very happy for him.

> He is cancer free, pain free, and watching us from heaven.

>

> I have heard many similar stories. We tried to keep fighting for him,

> but in the last few days, it was obvious he was done. He was ready to

> go " home " . He had fought cancer and LBD well, but he was obviously

> done. He had seen all my kids birthdays (they are all within 6 weeks of

> each other), seen the new baby, saw my oldest graduate, saw the full

> length play my teens had been working on for 8 months, and was all

> done.

>

> We are very happy that he will suffer no longer.

>

> My Sister - Update

>

>  

>

> Since probably 6/11, my sister hasn't hardly eaten or drank anything.

> Her kidneys did not work at all this past Sunday. The Hospice nurses

> said her body is reserving it since she isn't drinking anything or

> eating. It takes two or three people to get her to the bathroom and by

> the time we get her to the bathroom she will become unresponsive. Once

> she lays back down she will come back around. She yells out in pain

> when we have to move her, even though she is on the Duragesic patch.

> Her bottom looks awful. The Hospic nurses says her vitals are good.

>

> I've asked them if they think we are nearing the end, and they don't

> think so, but how much longer can she go without eating or drinking.

> She will occasionally drink a little, but not much and she becomes very

> agitated when we try to get her to eat or drink.

>

> They said they have only seen one other patient that was diagnosed with

> LBD. He was a man and became very aggressive. She hasn't but she is

> so weak I don't think she could raise a hand, although she does get

> verbally aggressive.

>

> Can anyone give me some input. I believe LBD is so unknown even to the

> medical profession that they really don't know what to expect.

>

>

>

> [Non-text portions of this message

>

[Guest guest]

You have my condolences, . What a rough road.

Sincerely,

Lori

My Sister - Update

Since probably 6/11, my sister hasn't hardly eaten or drank anything.

Her kidneys did not work at all this past Sunday. The Hospice nurses

said her body is reserving it since she isn't drinking anything or

eating. It takes two or three people to get her to the bathroom and by

the time we get her to the bathroom she will become unresponsive. Once

she lays back down she will come back around. She yells out in pain

when we have to move her, even though she is on the Duragesic patch.

Her bottom looks awful. The Hospic nurses says her vitals are good.

I've asked them if they think we are nearing the end, and they don't

think so, but how much longer can she go without eating or drinking.

She will occasionally drink a little, but not much and she becomes very

agitated when we try to get her to eat or drink.

They said they have only seen one other patient that was diagnosed with

LBD. He was a man and became very aggressive. She hasn't but she is

so weak I don't think she could raise a hand, although she does get

verbally aggressive.

Can anyone give me some input. I believe LBD is so unknown even to the

medical profession that they really don't know what to expect.

[Non-text portions of this message

[Guest guest]

Dear ,

I am very sorry for your loss.... it is wonderful that the entire family was

able to be there with your Dad. I'm sure it gave him such great comfort. God

bless you for all your efforts.

Helene in NY

>

> I have not posted anything, but have been " lurking " for several months.

> The information i have been reading here has been very helpful.

>

> My dad had multiple myeloma cancer as well as LBD. His battle had been

> a roller coaster. There were times he was physically and cognitively

> doing very well, and other times when he had " episodes " of agitation,

> restlessness, hallucinations etc etc. More recently He had been doing

> very well, walking every day, eating well, and engaging with the

> family, even riding in the car and doing short errands with us. He had

> been steadily declining for the last year in spite our best efforts, so

> were very please to see him doing much better. He very suddenly took a

> sharp turn for the worst. There was no obvious explainable reason. We

> took him to see both the PCP, senior neurological specialist, and

> oncologist. No one could explain his sudden turn. They did every test

> imaginable.

>

> Within a few days he completely stopped eating, and in a few more

> stopped drinking. He had began falling again during this time. We

> promised my dad a long time ago we would not put him in a nursing home,

> so we hired a hospice nurse to help us. We took shifts sleeping in his

> room so we could hear if he tried to get up. The hospice nurse told us

> he was " in the active phase of dying " . This process can take anywhere

> from 1-2 months she told us. Of course we mentioned how well he had

> been doing just a few weeks prior. She said that was very normal. They

> often get a surge of energy and virtually resume normal life, but it

> only last a few day or weeks at the most. It lasted two weeks for him.

> We contacted two more hospice agencies for second opinions. They said

> the same thing. Within 3 days of contacting the first hospice person he

> started in with the infamous " death rattle " . The nurse gave him meds to

> help him.....atropine I think......we also started to notice that his

> hands and feet were very mottled and gray/blue. He had been refusing

> food for 2 days, and on the third day, refused water. We tried swabs

> with Gatorade as his diaper was completely dry. He would spit out the

> swab and become agitated. His body temp fluctuated between feverish and

> cold. The nurse said that was a very normal process of his body

> shutting down. He died 48 hours later. We were able to honor our

> promise to him. He died with his whole family around him. My husband

> read and sang to him, my mom held his hands, my teens sat by his side

> with a cold cloth on his face (he had always loved that), and I sat

> nursing my newborn. It was very peaceful.

>

> His funeral is today. He will be missed, but we are very happy for him.

> He is cancer free, pain free, and watching us from heaven.

>

> I have heard many similar stories. We tried to keep fighting for him,

> but in the last few days, it was obvious he was done. He was ready to

> go " home " . He had fought cancer and LBD well, but he was obviously

> done. He had seen all my kids birthdays (they are all within 6 weeks of

> each other), seen the new baby, saw my oldest graduate, saw the full

> length play my teens had been working on for 8 months, and was all

> done.

>

> We are very happy that he will suffer no longer.

>

> My Sister - Update

>

>  

>

> Since probably 6/11, my sister hasn't hardly eaten or drank anything.

> Her kidneys did not work at all this past Sunday. The Hospice nurses

> said her body is reserving it since she isn't drinking anything or

> eating. It takes two or three people to get her to the bathroom and by

> the time we get her to the bathroom she will become unresponsive. Once

> she lays back down she will come back around. She yells out in pain

> when we have to move her, even though she is on the Duragesic patch.

> Her bottom looks awful. The Hospic nurses says her vitals are good.

>

> I've asked them if they think we are nearing the end, and they don't

> think so, but how much longer can she go without eating or drinking.

> She will occasionally drink a little, but not much and she becomes very

> agitated when we try to get her to eat or drink.

>

> They said they have only seen one other patient that was diagnosed with

> LBD. He was a man and became very aggressive. She hasn't but she is

> so weak I don't think she could raise a hand, although she does get

> verbally aggressive.

>

> Can anyone give me some input. I believe LBD is so unknown even to the

> medical profession that they really don't know what to expect.

>

>

>

> [Non-text portions of this message

>