Re: How long, progression, expectations

[Guest guest]

There is no known way to figure out how long anyone has.

Usually it is 3-10 years " after " diagnosis. Mom was exactly 4 years after her

dementia diagnosis. Others do shorter or longer.

Hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

How long, progression, expectations

I wonder about the progression of LBD with parkinsonism. My dad has shown

symptoms for about 3-4 years but was just diagnosed in November 2010. He's had

three bad episodes with confusion/hallucinations within the last year but

" recovered " from them. I know there are no absolutes but is there anything I

can somewhat expect in the future? He is 83. He is not on any meds and I think

he really does better without them.

Toni (daughter of , age 83)

[Guest guest]

Thank you Donna - especially for the hugs. I see that you still follow this

group even after your mom has been gone. That speaks for how it must have

affected you. Do you worry that you will get the symptoms. I find myself

thinking about it at times when I do something rather goofy. Did your mother

sleep excessively during the day? Did she have long (months) periods of

somewhat normalcy at any times during her four years? Did she suffer from the

parkinsonisms also? I sometimes have worries that I moved my dad to the nursing

home too soon. I cared for him for nine months in my home after my mother died.

Toni

>

> There is no known way to figure out how long anyone has.

>

> Usually it is 3-10 years " after " diagnosis. Mom was exactly 4 years after her

dementia diagnosis. Others do shorter or longer.

>

> Hugs,

>

> Donna R

>

> Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

>

>

> How long, progression, expectations

>

> I wonder about the progression of LBD with parkinsonism. My dad has shown

symptoms for about 3-4 years but was just diagnosed in November 2010. He's had

three bad episodes with confusion/hallucinations within the last year but

" recovered " from them. I know there are no absolutes but is there anything I

can somewhat expect in the future? He is 83. He is not on any meds and I think

he really does better without them.

>

> Toni (daughter of , age 83)

>

>

>

>

>

>

[Guest guest]

Toni,

Back when I was caring for Mom there was no help at all. No diagnosis. The MD

said she had AD! But I knew that was wrong when I saw her with the Alzheimers

people in a group. So I came on and found dementias and tried to figure it out

for myself.

She knew from the beginning of the 4 years until the end but it was confusing

for anyone to talk to her and her to be able to be lucid about it. If I asked

her a question she could do yes or no very appropriately. She could do no drugs

and I fought with the nh from the beginning of her last year to the end. It was

drugs that put her into the nh, she couldn't walk after a hospital visit to find

something to " help her sleep. " My house was to small for a wheel chair.

I am part owner of this site at this point. I came on to help Ann with it and

after her sister in law died, and came on to help with the technical

part, I tried to stay and help those who went through stuff I had gone through

as it had just about did me in. I had my daughter to help and me and that was

it. My daughter had her own family and she was working too.

I was also part of the LBDA Board for the first few years. My Mom's estate was

in WI and I had 2 step bros who wanted their " stuff. " So I had lots to do after

she died and I am not still caught up. But yes, this is more important to me to

help others.

Mom didn't have periods of normalcy but she would try. She slept every other

night! I had her in day care and until the very end when she went into the nh,

she did fairly good. She never slept during the day. I don't OFTEN worry about

me getting it. I am 71 and forgetful and hope this isn't the start of it. If it

is there is nothing I can do anyway. As I get older, I realize nothing is like

it was when I was 30-40-and-50.

I did have two new knees put in last year from me carrying to much weight and

lifting Mom when she was in the nh and I was all that was available to put her

to bed. Mom's most noticeable problem was her falling (from the Parkinson's).

It took me a while to catch on.

If you go to Yahoo (you can click on it at the bottom of most of these emails)

and read some of the files, you can get a lot of info. You can also do a

" search " of the past emails to learn what someone might have already discussed.

There is another group of those who have spouses and they have done some work on

the " stages of LBD " in those files. Check them out.

Hope this helps. Hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

How long, progression, expectations

>

> I wonder about the progression of LBD with parkinsonism. My dad has shown

symptoms for about 3-4 years but was just diagnosed in November 2010. He's had

three bad episodes with confusion/hallucinations within the last year but

" recovered " from them. I know there are no absolutes but is there anything I

can somewhat expect in the future? He is 83. He is not on any meds and I think

he really does better without them.

>

> Toni (daughter of , age 83)

>

>

>

>

>

>

[Guest guest]

I can see how nobody knew anything about it back then. Anytime I mention it to

the nursing home staff or dad's other doctors they look at me with such a blank

stare even today. Everyone's experience seems so different and yet there are so

many similarities too. My dad falls often also. He fell in the hospital and

damaged his eye and lost vision in it. He doesn't realize he has problems.

Every visit to the nursing home has him asking me to look for an apartment for

him where he can walk to stores. He falls asleep constantly. Most times he

will go to sleep at night but is up several times for bathroom breaks. Then he

will have periods where he is very confused and doesn't sleep ever. Sleeping

every other night must have been so horrible for you. I lose it very quickly

when I am sleep deprived. Thank you for doing all that you do.

Toni

> >

> > There is no known way to figure out how long anyone has.

> >

> > Usually it is 3-10 years " after " diagnosis. Mom was exactly 4 years after

her dementia diagnosis. Others do shorter or longer.

> >

> > Hugs,

> >

> > Donna R

> >

> > Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

> >

> >

> > How long, progression, expectations

> >

> > I wonder about the progression of LBD with parkinsonism. My dad has shown

symptoms for about 3-4 years but was just diagnosed in November 2010. He's had

three bad episodes with confusion/hallucinations within the last year but

" recovered " from them. I know there are no absolutes but is there anything I

can somewhat expect in the future? He is 83. He is not on any meds and I think

he really does better without them.

> >

> > Toni (daughter of , age 83)

> >

> >

> >

> >

> >

> >

[Guest guest]

Toni:

You sound like you're in the searching stage like I am, trying to find out where

we are with LBD. My sister, , sounds a lot like your Dad. She was

diagnosed with Parkinsons several years ago, and the hallucinations started

about two years. Thinks got bad in November when she left her home walking,

because the people in her house were going to kill her. After a three week

hospital stay, they diagnosed her with LBD. She has progressed a great deal

since then. She can hardly walk any at all on her own. She is like " dead

weight " when we try to move her. Occasionally, she does pretty good in

helping, but most of the time it takes two to get her to the bathroom.

For the past month she has been sleeping good five out of seven nights. She is

on Risperdal and Ativan and it seems this has helped calm her somewhat and help

her sleep; however, some of the e-mails I have read, Risperdal and Ativan were

not recommended. She is highly sensitive to anti-psychotics, and I would have

thought this would have made things worse.

She still has periods of being highly agitated, mostly at the family because we

can't do things fast enough for her and won't take her home.

I know everyone progresses differently with this disease, and even the medical

professionals seem to know little about it. But it would be great if we knew

more of where we were and what to expect.

How long, progression, expectations

>

> I wonder about the progression of LBD with parkinsonism. My dad has shown

symptoms for about 3-4 years but was just diagnosed in November 2010. He's had

three bad episodes with confusion/hallucinations within the last year but

" recovered " from them. I know there are no absolutes but is there anything I can

somewhat expect in the future? He is 83. He is not on any meds and I think he

really does better without them.

>

> Toni (daughter of , age 83)

>

>

>

>

>

>

[Guest guest]

My mom knew at one time that she did things she didn't remember, when

" the lewies " took over, but she believed me when I described her actions

when she wasn't doing well, if I told her about it afterward. On several

occasions she has returned to her normal in the hospital, which served

to reinforce that she behaved certain ways and then didn't remember it

later.

Now, however, she doesn't want to know, doesn't want to hear or talk

about anything that is negative, and just wants as much mental and

emotional peace and as much happiness as she can grab. And I'm of course

more than willing to accomodate her and make her path as smooth as I

can.

--

His,

Sherry

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

> My dad has varying periods of somewhat normalness. His normal including

excessive daytime sleeping.... probably 6 hours at least. Then he will have

periods where he hallucinates and is very confused - can't find the bathroom,

can't dress self or feed self. He falls repeatedly. He will stay like that for

varying amounts of time - once for 5 weeks. Then he will pop back into somewhat

normalness. During his normal periods, he can walk fairly well and do pretty

well bathing and dressing. Eating is always messy. I moved him into the nursing

home during that 5 week craziness period. Now he is back to his " normalness'

and he remembers nothing and can't understand why he needs to be there. It is

so hard listening to him beg to leave and live by himself somewhere. I think I

would almost find it easier if he would stay in one kind of condition rather

than bounce back and forth. It would be easier if he realized what was

happening to him.

> He doesn't seem to. I wonder if others experience this bizarre difference and

if their LOs know or remember what happens during " episodes. " . I can't help but

wonder how long this back and forth behavior will occur. Will he have an

episode one time and not back bounce from it. There are just way too many

unknowns that make it so hard to make any kind of care decision.

[Guest guest]

Hi Toni,

The fluctuation is part of the dreaded disease that is so frustrating. My

husband bounced back so many times from the edge, it was miraculous.

His dementia days began in 2000, but he recently died in January of this year.

My husband could not tell where a toilet was at home, he slept long hours, put

his clothes on funny, he sometimes could be             

self-feeding and other

times because of lack of visuospatial awareness, he could not self-feed, he

would grope for his food on the plate. He fell a lot in the late 90s into the

early 2000s and then was in a wheelchair from 2007-2011, he lost the ability to

walk. All the while his cognition would fluctuate. He would have normalcy at

times. I never knew what I would have from hour to hour, day to day, month to

month. Sometimes normalcy lasted for days and other times just  moments before

confusion kicked in and that would last for who knows how long. In the early

years, he would be confused and then the phone would ring and it's his brother

and on the phone he would speak completely normal as if there was no confusion

only a few minutes before. It's a very frustrating disease. You never know

where

you are in the scheme of things. A few times my husband was hospitalized and

they told me, he may not make it, but he would pull through and bounce back. I

came to the group a few times thinking it was the end. I finally felt like " the

girl that cried wolf " and if I came on one more time, no one would believe me

when it was finally the end. 

But you will know when it is the end. For Jim anyway, he did not have one ounce

left of strength. He was always so strong to bounce back before, but he had

nothing left at the end. He had no feistiness like he always had. There was

nothing there. He faded away everyday for 6 days at the end. I think everyone

has a different story about the end, but for me at the end, it was easy to see

it was the end when it was finally the end.

Jim too would say he wanted to go home from the nursing home. I think they all

say that. They don't realize how hard it is with them at home. I used to take my

husband home from Friday-Sunday almost every weekend and return him late Sunday

to the nursing home. I told him, he couldn't come home if he wouldn't cooperate

and go back to the nursing home on Sunday. Only once did he act up and not want

to go back, so I called the Transport Ambulance and they picked him up and

brought him back. It cost me that day, but it was only once and he learned not

to act up or I would have a way to bring him back. Then one day, I brought him

home and he wouldn't get out of the car. He said it was not his house and when I

got him out of the car, he would not go inside, so that was the end of bringing

him home plus, he tried to open the car door while I was driving, so that was

the end of bringing him home. So, even though they say they want to go home,

they might not want to be there when they get there. In your heart you know that

it is best that he is where he is, for your sanity and his safety. You kind of

have to treat them as you would a two year old, you know what is best for them,

because they no longer can make appropriate decisions for themselves. This

disease is hard on everyone.

You are in my thoughts, take each day at a time and enjoy what you can of them,

because one day they will be gone. Truthfully, everytime I thought I had it

hard, when I looked back that time didn't seem so hard as what I was going

through later. It's all relative to where you are in the disease.

Jan Colello

San Francisco Bay Area, California

Husband, Jim, dx w/LBD Oct. 2003 

Deceased January 22, 2011 

Hello ,

My dad has varying periods of somewhat normalness. His normal including

excessive daytime sleeping.... probably 6 hours at least. Then he will have

periods where he hallucinates and is very confused - can't find the bathroom,

can't dress self or feed self. He falls repeatedly. He will stay like that for

varying amounts of time - once for 5 weeks. Then he will pop back into somewhat

normalness. During his normal periods, he can walk fairly well and do pretty

well bathing and dressing. Eating is always messy. I moved him into the nursing

home during that 5 week craziness period. Now he is back to his " normalness' and

he remembers nothing and can't understand why he needs to be there. It is so

hard listening to him beg to leave and live by himself somewhere. I think I

would almost find it easier if he would stay in one kind of condition rather

than bounce back and forth. It would be easier if he realized what was happening

to him.

He doesn't seem to. I wonder if others experience this bizarre difference and if

their LOs know or remember what happens during " episodes. " . I can't help but

wonder how long this back and forth behavior will occur. Will he have an episode

one time and not back bounce from it. There are just way too many unknowns that

make it so hard to make any kind of care decision.

Toni

> >

> > There is no known way to figure out how long anyone has.

> >

> > Usually it is 3-10 years " after " diagnosis. Mom was exactly 4 years after

her

>dementia diagnosis. Others do shorter or longer.

> >

> > Hugs,

> >

> > Donna R

> >

> > Cared for Mom 3 years in my home and the last year at a nh. She passed away

>from LBD in 2002.

> >

> >

> > How long, progression, expectations

> >

> > I wonder about the progression of LBD with parkinsonism. My dad has shown

>symptoms for about 3-4 years but was just diagnosed in November 2010. He's had

>three bad episodes with confusion/hallucinations within the last year but

> " recovered " from them. I know there are no absolutes but is there anything I

can

>somewhat expect in the future? He is 83. He is not on any meds and I think he

>really does better without them.

>

> >

> > Toni (daughter of , age 83)

> >

> >

> >

> >

> >

> >

[Guest guest]

Sherry and Jan,

Thank you for your information. It helps to hear about others experiencing the

fluctuations because they cause me such doubt about decisions I've made. I

attended a care conference at the nursing home yesterday and came away feeling

much better. They indicated that on a scale of 0 to 7 with 0 being a normal

person, my dad was 5.5 indicating moderate dementia. They said that he was

socializing in the halls and attending activities in the large hall. He had

told me that he wasn't attending any of the activities. They indicated that he

was really sweet and they all loved him. I must admit this nursing home has the

most friendly people - all of them - maintenance men, cleaners, nurses and

aides. They always seem happy and are joking with each other and the patients.

It appears that my dad is adjusting better than he is telling me. What a

relief.

I understand what you are saying about the phone call and how they can seem so

normal at times. The social worker at the home said my father " presented " well

but when you spent more time with him at different times of the day, you could

see his cognitive problems.

I'm also interested to hear that your husband slept a lot. I don't see that as

a concern or symptom mentioned much here but it is definitely part of my dad's

symptoms. I took him to the retinal specialist this week and he fell asleep in

the waiting room. It took awhile to wake him when it was his turn and then he

started to take off his shirt. Then he finally got up and started walking in

the wrong direction. During one of my father's hospital stays, he fell and

damaged an eye to the point of requiring two surgeries and losing vision in that

eye. That does not help his visual problems.

Thank you so much for taking the time to explain your experience. I see that I

still have many ups and downs to go through and will try to remember your words

as this goes on. I will try not to second guess myself over and over again when

these fluctuations occur.

Toni

> > >

> > > There is no known way to figure out how long anyone has.

> > >

> > > Usually it is 3-10 years " after " diagnosis. Mom was exactly 4 years after

her

> >dementia diagnosis. Others do shorter or longer.

> > >

> > > Hugs,

> > >

> > > Donna R

> > >

> > > Cared for Mom 3 years in my home and the last year at a nh. She passed

away

> >from LBD in 2002.

> > >

> > >

> > > How long, progression, expectations

> > >

> > > I wonder about the progression of LBD with parkinsonism. My dad has shown

> >symptoms for about 3-4 years but was just diagnosed in November 2010. He's

had

> >three bad episodes with confusion/hallucinations within the last year but

> > " recovered " from them. I know there are no absolutes but is there anything I

can

> >somewhat expect in the future? He is 83. He is not on any meds and I think he

> >really does better without them.

> >

> > >

> > > Toni (daughter of , age 83)

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Toni:

I understand what you mean about periods of normalcy. My sister will be talking

all kinds of things, making no sense whatsoever, then someone will call on the

phone and she carries on a normal conversation!! Also, sometimes when I take

her to the bathroom she can get up out of her chair with little assistance from

me, then trying to get her up from the commode is a different story, she is

" dead weight " I even question sometimes if she may be " faking " the ability to

get up. But I have read that it seems that way sometimes.

How long, progression, expectations

> > >

> > > I wonder about the progression of LBD with parkinsonism. My dad has shown

> >symptoms for about 3-4 years but was just diagnosed in November 2010. He's

had

> >three bad episodes with confusion/hallucinations within the last year but

> > " recovered " from them. I know there are no absolutes but is there anything I

can

> >somewhat expect in the future? He is 83. He is not on any meds and I think he

> >really does better without them.

> >

> > >

> > > Toni (daughter of , age 83)

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

I don't think I would have realized all of these things if I hadn't actually

lived with my dad. When I was just visiting I didn't have a clear picture at

all. I wonder if the dead weight time is one of those " parkinson's " moments. I

know my dad can really stiffen up and not be able to move.

Toni

> > > >

> > > > There is no known way to figure out how long anyone has.

> > > >

> > > > Usually it is 3-10 years " after " diagnosis. Mom was exactly 4 years

after her

> > >dementia diagnosis. Others do shorter or longer.

> > > >

> > > > Hugs,

> > > >

> > > > Donna R

> > > >

> > > > Cared for Mom 3 years in my home and the last year at a nh. She passed

away

> > >from LBD in 2002.

> > > >

> > > >

> > > > How long, progression, expectations

> > > >

> > > > I wonder about the progression of LBD with parkinsonism. My dad has

shown

> > >symptoms for about 3-4 years but was just diagnosed in November 2010. He's

had

> > >three bad episodes with confusion/hallucinations within the last year but

> > > " recovered " from them. I know there are no absolutes but is there anything

I can

> > >somewhat expect in the future? He is 83. He is not on any meds and I think

he

> > >really does better without them.

> > >

> > > >

> > > > Toni (daughter of , age 83)

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >