What Stage Would This Be?

April 12, 2006

I didn't sleep a wink last night because of everything going on with

my FIL. It was all I could think about. If he is falling as much as

he is (11 times in 2 days) and couldn't remember that his mom died 15

years ago, is he getting close to the end stage of LBD? Are there

stages of the disease? I should know the answer, but I've read so

much that things are starting to run together. How much worse can we

expect things to get? I just want to be as prepared for what lies

ahead as is possible.

Thanks, again, for all your help.

April

April 12, 2006

April,

I wouldn't read too much in to your FIL not remembering that his parents were

dead. My Dad's parents died on 12/24/64 and 1/1/65. Dad was with both of his

parents at their passing. Fairly early into my Dad's 13 year Lewy journey (more

than 30 years later) he would periodically:

1. Forget they were dead and ask to see them.

2. Forget they were dead and complain bitterly that they didn't ever come to

see him.

3. Remember that they were dead but be upset that no one had told him and that

he didn't get to go to their funerals (yes, he went to their funerals; my

grandmother died at my house when I was 9 years old)

4. Remember that they were dead and weep bitterly because the memory of their

passing seemed so recent and fresh.

For more than 5 years before his passing, Dad would come up with one of these

senarios out of the blue. There was no trigger that we could discover, and he

couldn't be distracted. We just had to comfort him and ride it out.

I think what I am saying April is that with LBD, cognition and memory fluctuate.

They remember different things from day to day. Dad would go for 2 weeks

without knowing who I was, then call me by name and have memories about me the

next day.

Since Dad passed away suddenly in his sleep from heart failure, we never really

experienced the " end stages " where our LOs quit eating and the organs slowly

stop working. Dad had chronic congestive heart failure, so he had the mottling

(blue splotches on the extremeties) of and on as his heart fluctuated. However,

it doesn't sound to me like your FIL is nearing end stage.

Margee

============================================================

Date: 2006/04/12 Wed AM 07:10:56 EDT

To: LBDcaregivers

Subject: What " Stage " Would This Be?

============================================================

April 12, 2006

>

Margee,

I'm amazed that your father had LBD for 13 years. I was under the

impression that it didn't last that long. I guess every patient is

different.

It's both good and bad to know that you don't think my FIL is

nearing end-stage. What I mean by that is that's it's good that he

may continue to live longer, but it's bad in that the state he's in

now could drag on and on. It's hard for me to see how much worse

things can get. He has to wear Depends all the time, falls more and

more frequently, can do almost nothing on his own (bathe,use the

toilet, dress, tie his shoes, walk, sit, stand),

is paranoid and delusional,and has a failing memory. The list just

goes on and on. I keep thinking what will another 4 or 5 months be

like. Just since Dec., he has gotten much worse. So very scary for

all of us.

April

> I wouldn't read too much in to your FIL not remembering that his

parents were dead. My Dad's parents died on 12/24/64 and 1/1/65.

Dad was with both of his parents at their passing. Fairly early into

my Dad's 13 year Lewy journey (more than 30 years later) he would

periodically:

>

> 1. Forget they were dead and ask to see them.

> 2. Forget they were dead and complain bitterly that they didn't

ever come to see him.

> 3. Remember that they were dead but be upset that no one had told

him and that he didn't get to go to their funerals (yes, he went to

their funerals; my grandmother died at my house when I was 9 years

old)

> 4. Remember that they were dead and weep bitterly because the

memory of their passing seemed so recent and fresh.

>

> For more than 5 years before his passing, Dad would come up with

one of these senarios out of the blue. There was no trigger that we

could discover, and he couldn't be distracted. We just had to

comfort him and ride it out.

>

> I think what I am saying April is that with LBD, cognition and

memory fluctuate. They remember different things from day to day.

Dad would go for 2 weeks without knowing who I was, then call me by

name and have memories about me the next day.

>

> Since Dad passed away suddenly in his sleep from heart failure, we

never really experienced the " end stages " where our LOs quit eating

and the organs slowly stop working. Dad had chronic congestive

heart failure, so he had the mottling (blue splotches on the

extremeties) of and on as his heart fluctuated. However, it doesn't

sound to me like your FIL is nearing end stage.

>

> Margee

>

> ============================================================

>

> Date: 2006/04/12 Wed AM 07:10:56 EDT

> To: LBDcaregivers

> Subject: What " Stage " Would This Be?

>

> ============================================================

>

April 12, 2006

Thanks for offering some hope. I really pray that it's that easy.

April

>

> April, I've been in touch several times and I wouldn't assume that

your FIL

> will stay this way. My husband was exactly the same way and is

now walking

> around. He needs a good dr. and medication adjustments. Seewhat

you and your

> husband can do about getting this to happen. Illinois

>

April 13, 2006

April,

Usually end stages he won't be falling. He will be in bed most of the time and

he won't want to eat. He may have a bit of labored breathing. It more sounds

like meds to me or a UTI (Uri. Tract Infection.) or some other interaction of

the meds.

But you might want to click on the address after my name and go to the LBDA page

and go down to " caregiver info " and look for the " Family Alliance " I asked Peg

who set up the page, where the death and dying stuff was and she said the Family

Alliance had information.

Hope this helps.