Re: What LBD causes death?

October 9, 2011

The most common cause of death is pneumonia, caused when food or liquid is

aspirated into the lungs. Next would be the lack of ability to take in

nutrition/hydration due to dysphagia.

In our local support group, I'm not aware of anyone with LBD who willingly

stopped eating. This happens (the person willingly stops eating/drinking) in

the other disorders in our group. My assumption is that those with LBD are

unable to make such a decision due to profound dementia.

>

> My mom is a couple years into her obvious signs of LBD. Please pardon my

ignorance but could you tell me what actually causes death in an LBD patient? I

tried searching the group but could only find reference to death from lack of

nutrition when the person stops eating. I assume this is caused by the lack of

the ability to swallow? Or do the protien deposits in the brain eventually

affect organ function?

>

> (daughter and caregiver of Lois, 86 yrs old)

>

October 9, 2011

Persons do not die from LBD. They die from other things where LBD is a

contributing factor. Mostly these are opportunistic infections.

Or, they forget how to eat, and the part of the brain that cordinates swallowing

does not function properly. They aspirate food and get pneumonia. Eventually,

even with good swallowing they become cachectic which means that their bodies

just stop being able to process food. Sometimes they continue to eat, but lose

weight despite eating. Or they lose interest in food and essentially go into

starvation mode. According to hospice, not eating and not drinking is not

uncomfortable for them. Another common cause of death is sepsis from a pressure

ulcer. When they are very thin, pressure ulcers are easy to get. In fact,

there is one, called a Kenedy Terminal Ulcer that often comes in the days before

death....It's a black ulcer that appears suddenly over the tailbone and is

shaped like a butterfly. There just isn't enough circulation to get blood to

the area to keep the tissue healthy.

My husband weighed 218 pounds at the start of our journey. At the end, he

weighed 128. At one point he was down to 122 pounds. Not much for a six foot

tall man. But what got him was a fall and breaking his hip. He had surgery, had

a massive heart attack following the surgery and died from that. He developed a

Kennedy Terminal Ulcer the last 18 hours of his life.

It seems like a never ending road when you are travelling it. In many ways my

husband was lucky. He did not lie in bed and just waste away. It was pretty

quick.

Hope this information helps. Nan

>

> Hi ,

>

> I am interested in the answer to this question too. I also have a mother who

is in what would be " late stage LBD " but whose vital signs are good. Although

it goes up and down in terms of her appetite and her feeding herself or being

fed I have been unable to get a clear answer about the trajectory of the disease

untill the final passing.

>

> My mother is in home hospice as of several months ago but her condition has

not changed much. I would be interested as well if the lewy bodies eventually

impact the major organs or if most deaths occur from the loss of the swallowing

reflex and stopping to eat??

>

> Best,

>

> Judy

>

> Judy R Strauss LMSW, PhD

>

> Lead Faculty

> University of Phoenix/ Jersey City Campus

>

> (Cell)

>

> What LBD causes death?

>

> My mom is a couple years into her obvious signs of LBD. Please pardon my

ignorance but could you tell me what actually causes death in an LBD patient? I

tried searching the group but could only find reference to death from lack of

nutrition when the person stops eating. I assume this is caused by the lack of

the ability to swallow? Or do the protien deposits in the brain eventually

affect organ function?

>

> (daughter and caregiver of Lois, 86 yrs old)

>

October 9, 2011

Hi nan

I appreciate your help and straightforward answer to the question about how our

Loved ones might eventually pass from LBD !

Indeed your husband was fortunate to have complications that took

Him down quicker albeit What sounds like some hard times and humps along the way

which sound pretty terrible !

My mothers weight seems not to have gone down too thus far! About how long did

it take your husband to lose all that weight ??

Thanks !

Judy

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Cell-

Email- Jrstr@...

> Persons do not die from LBD. They die from other things where LBD is a

contributing factor. Mostly these are opportunistic infections.

>

> Or, they forget how to eat, and the part of the brain that cordinates

swallowing does not function properly. They aspirate food and get pneumonia.

Eventually, even with good swallowing they become cachectic which means that

their bodies just stop being able to process food. Sometimes they continue to

eat, but lose weight despite eating. Or they lose interest in food and

essentially go into starvation mode. According to hospice, not eating and not

drinking is not uncomfortable for them. Another common cause of death is sepsis

from a pressure ulcer. When they are very thin, pressure ulcers are easy to get.

In fact, there is one, called a Kenedy Terminal Ulcer that often comes in the

days before death....It's a black ulcer that appears suddenly over the tailbone

and is shaped like a butterfly. There just isn't enough circulation to get blood

to the area to keep the tissue healthy.

>

> My husband weighed 218 pounds at the start of our journey. At the end, he

weighed 128. At one point he was down to 122 pounds. Not much for a six foot

tall man. But what got him was a fall and breaking his hip. He had surgery, had

a massive heart attack following the surgery and died from that. He developed a

Kennedy Terminal Ulcer the last 18 hours of his life.

>

> It seems like a never ending road when you are travelling it. In many ways my

husband was lucky. He did not lie in bed and just waste away. It was pretty

quick.

>

> Hope this information helps. Nan

>

> >

> > Hi ,

> >

> > I am interested in the answer to this question too. I also have a mother who

is in what would be " late stage LBD " but whose vital signs are good. Although

it goes up and down in terms of her appetite and her feeding herself or being

fed I have been unable to get a clear answer about the trajectory of the disease

untill the final passing.

> >

> > My mother is in home hospice as of several months ago but her condition has

not changed much. I would be interested as well if the lewy bodies eventually

impact the major organs or if most deaths occur from the loss of the swallowing

reflex and stopping to eat??

> >

> > Best,

> >

> > Judy

> >

> > Judy R Strauss LMSW, PhD

> >

> > Lead Faculty

> > University of Phoenix/ Jersey City Campus

> >

> > (Cell)

> >

> > What LBD causes death?

> >

> > My mom is a couple years into her obvious signs of LBD. Please pardon my

ignorance but could you tell me what actually causes death in an LBD patient? I

tried searching the group but could only find reference to death from lack of

nutrition when the person stops eating. I assume this is caused by the lack of

the ability to swallow? Or do the protien deposits in the brain eventually

affect organ function?

> >

> > (daughter and caregiver of Lois, 86 yrs old)

> >

October 9, 2011

My husband has LBD, but my father had ALZ and died of pneumonia. He was in the

beginning of the end stage and was unable to swallow.

My husband first showed symptoms of LBD in 2000, but did not go seriously

downhill until 2007. He began to lose weight and has gone from about 220 down

to around 130. I can't get him on a scale so it might be less. He enjoys food

and eats quite well, although some days much better than others. He might have

a couple of days where he eats very little, then he seems to bounce back and eat

heartily for several days.

I have tried several meds on him. I only give him Seroquel if he is being

extremely difficult. It calms him down, but he has very vivid dreams that

continue into a waking state and he acts out. None of this is frightening for

either one of us as he is generally imagining himself with other folks either

singing or having a conversation. After that, he will come back to bed and

sleep--usually about 15 minutes.

My one difficulty is that my husband speaks 6 languages, only 2 of which I can

converse in him with (English and French). Currently, he speaks Hebrew more

often than not. When I remind him to speak English, he tells me is IS speaking

English then switches to French. That's fine as I then understand him. I know

certain phrases in Hebrew, but I can only imagine if I had to hospitalize him.

English is the last language he acquired and so it is the one where words are

slipping away from his memory. He often mixes words in 3 different languages at

once while trying to convey what he needs.

Cassie

To: LBDcaregivers

From: jrstraussb@...

Date: Sun, 9 Oct 2011 19:06:14 -0400

Subject: Re: Re: What LBD causes death?