Re: Hello, Wondering - Patti

August 8, 2004

Hi Patti-

I had heard that the most common cause of death was pneumonia.

It is common for LBD patients to aspirate liquids and/or food

into the lungs, resulting in aspiration pneumonia. Well, this

happened to my dad in January 2000. He was so very ill. He

had lost so much weight, was frail and weak, he had dark circles

under his eyes. He ended up with a feeding tube as he was

unable to swallow anything, he was so very sick. Well, during the

next 3 months he started swallowing again, was gaining both

weight and his strength and by April 4 he had the feeding tube

removed. He moved to a different nursing home, and lived yet

another 2 1/2 years. What finally took my dad to his resting

place?? It appears he made a decision to stop eating. It was

a tough call for the psychiatrists involved, dad had dementia,

was he aware of his decision. Well, the 2 meals I tried to feed

him, he made it very obvious...he clenched his jaws together,

moved his head to one side, grunted a 'no' and would even flail

his hand and arm at the food coming toward him. When I figured

out what was happening, I asked my dad if he wanted the food

taken away...he shook his head in a 'yes' motion, and so it

was. I told my dad I knew what he was doing and 'it' was ok

with me, I would stand by his decision, and as always, we would

make it through this, 'til the end. Ironically, the day before

my dad passed away, he was up and used the bathroom. His eyes

were bright and he was aware of his surroundings. He walked

the halls, sat in a recliner and it was as if he was trying

to tell me something. He had the biggest, brighest blue eyes,

they spoke volumes. My dad had been mute for so long, not able

to vocalise, yet that day, he kept grunting and leaning toward

me. At first, I said things like... " dad, it seems you are trying

to tell me something...c'mon, I haven't heard your voice for so

long...talk to me dad...talk to me. " Well, I held his hands,

I carressed his arms, we sat in silence, our hearts speaking to

one another. The next morning, on Sept. 20, 2002, my dad

indicated he didn't want to get out of bed. I was not with him

yet we had a family member that worked at the NH. Dad was

awake and alert, finally, around 11:00-11:15, my dad shut his

eyes, peacefully, winning his battle with LBD.

That is my story. This is the knowledge I had learned throughout

our journey. What I thought was supposed to happen, didn't, my

dad wrote his own book.

He regained so much honor and dignity, something that had been

lost for the last 3 years of his life. My dad was able to make

a decision about his life - one to go to his final resting place.

Thinking of my dad tonight, with tears of pride for him, and all

that he showed me through out my life, and in those last days

of his life here on earth.

Hugs to you Patti, from my heart to yours. Thank you for asking

for our knowledge, and for allowing me to share my dad's story.

Once again, I was able to let his legacy live on.

Sandie

Des Moines, IA

-- " Patti " wrote:

Hi to Everyone and I do hope that this has been a Sunny Sunday for

all of you. You all deserve only the sunniest of days always.

I have been doing some reading on different things at Pubmed and I

ran across an article that said something about that Juvenile onset

was it's purest form. Has anyone heard of this or read about it?

Also there was another article that said something about death is

sometimes due to paralysis of the vocal chords and apnea. Has anyone

gotten any of these articles from PUBMED? If so would you be willing

to share them.

Can anyone tell me what is the usual cause of death? I already have

sleep apnea and have had a palsy of the vocal chords so don't worry

about scaring me. I would think this would be a rather peaceful way

to go.

I thank you all for your honesty and integrity....Hugs...Patti

Welcome to LBDcaregivers.

August 9, 2004

Hi Sandie,

Thank you so much for sharing your story with me. I appreciate it so

much. I would have to agree with your fathers decision for me. I have

explained to my husband and children that If I should not feel like

eating or drinking not to force me to do so. I will eat and drink as

long as I feel like doing so. I do not know if this is right or

wrong, but it has been my experience that those who have done this

seem to have a quieter more peaceful death. I think there are natural

ways to die just as there are natural ways to be born. This is just

my own thinking though and is not for everyone.

I an glad you had this time with your father at the last. Often I

have seen people rally just before they die. Again just my own

feeling is that they have finally made peace with what is about to

happen and I think they know that the end is near. Perhaps this is

why your father did keep silent. I don't know that he may not have

been able to say anything. Somehow though I think when this happens

it gives the loved one a special blessing and a happy memory that

makes it somewhat easier to accept.

You are really special for what you do here and for the love that you

give. You will be remembered for your works in the highest of

places...Hugs...Patti

> Hi to Everyone and I do hope that this has been a Sunny Sunday for

> all of you. You all deserve only the sunniest of days always.

>

> I have been doing some reading on different things at Pubmed and I

> ran across an article that said something about that Juvenile onset

> was it's purest form. Has anyone heard of this or read about it?

>

> Also there was another article that said something about death is

> sometimes due to paralysis of the vocal chords and apnea. Has

anyone

> gotten any of these articles from PUBMED? If so would you be

willing

> to share them.

>

> Can anyone tell me what is the usual cause of death? I already have

> sleep apnea and have had a palsy of the vocal chords so don't worry

> about scaring me. I would think this would be a rather peaceful way

> to go.

>

> I thank you all for your honesty and integrity....Hugs...Patti

>

> Welcome to LBDcaregivers.

>

August 9, 2004

Certainly an easy and happy memory for one you love is far easier for one to

take than a struggle with not the pleasant of memory of the last days or hours.

It was just the other evening that I had a dream about a very pleasant

vacation....it was the first dream that did not have any thought of the last

years.

Simmel