Re: Mother with LBD

April 28, 2007

Marsha welcome to the group. I'm glad you found us. Every word of

your post makes sense.

<snip> She wakes up during the night and don't know where she is,

[...] she thinks that daddy is making her sleep in a different house

every night. <snip>

That's called " Capgras's syndrome " -- read more here:

http://en.wikipedia.org/wiki/Capgras_delusion

<snip> When we seen the doctor this week he upped her dosage of

Seroquel to 150mg in the morning and 150mg at night. <snip>

Read more about suggested medications and its dosages here (by Dr.

Bradley Boeve):

http://www.lewybodydementia.org/Boevelink.php

<snip> If she isn't sleeping better and is still having frequent

hallucinations he told me to give him a call back.<snip>

We recently had a Q & A session with Dr. Gomperts of Mass.

General Hospital's Memory & Movement Disorders Unit. Hallucinations

and sleeplessness were covered. Read the transcript here:

http://health.groups.yahoo.com/group/LBDcaregivers/files/

And look in the folder marked:

LBDA

Lewy Body Dementia Association News

<snip> Then I asked if LBD had stages like Alzheimer's disease? If so

what stage was my mother in? <snip>

It's true that everyone is not only different, but reacts to

medications differently. However, an unscientific listing of phases

was put together by caregivers - to read it go here:

http://health.groups.yahoo.com/group/LBDcaregivers/files/

And look in the folder marked:

LBD Phases

List of Phases put together by the LBD Caring Spouses Group

<snip> I was grateful for his honesty [...]<snip>

I agree, you've found a good doctor and his honesty is certainly

commended.

We have a couple of useful documents that may be beneficial. There's

a FAQ document here:

http://health.groups.yahoo.com/group/LBDcaregivers/files/

And look in the folder marked:

FAQ

Top 10 Important Topics Related to LBD

There's information of what to think about legally:

http://health.groups.yahoo.com/group/LBDcaregivers/files/

The Business of Dementia.doc

The 'legal' things you need to know about

<snip> [...] but my other sister and my brother could help us out

more than they do.<snip>

Many of us has seen the same. I have one sister who did just as much

as I did in the caring for our mom. I have one brother who dropped

off the face of the earth. He couldn't handle it. It's unfortunate,

but happens. You only can do as much as you can to enlighten them and

they're just going to believe what they want to believe. I feel more

sorry for my brother than I do for my sister & I -- he missed out in

coming to terms with what was going on. My sister & I benefitted in

becoming closer to not only my mom during her last year, but with

each other. We know now that we can depend on each other for anything

& everything.

<snip>He has really been strong for mother and is doing great but I

worry so much about him because I know it is alot of stress I am

there too.<snip>

It's true that caregivers need to care for themselves too. Many of us

have learned the hard way of what happens when we neglect our own

health. It's a good idea to start preparing now for what could be

helpful to you in the near future:

Getting caregivers to help out at home - go here:

http://www.alz.org/carefinder/index.asp

Start learning now about Nursing Homes - go here:

http://health.groups.yahoo.com/group/LBDcaregivers/links

And go into the folder marked:

Nursing Home / Long Term Care Search

A list of sites that may help in one of your most difficult

decisions.

Start learning now about Hospice - go here:

http://www.hospicenet.org/

To find out the criteria of Hospice - go here:

http://health.groups.yahoo.com/group/LBDcaregivers/files/

hospcie_1_.pdf

List of Hospice Criteria

Here's more links to help you get some of the answers you're looking

for:

Main board:

http://groups.yahoo.com/group/LBDcaregivers/

(Read your emails via the board vs. your `in box'. And get into all

the different sections that are available on the website.)

Links Section:

http://health.groups.yahoo.com/group/LBDcaregivers/links

(Tons of links that is continuously a `work in progress' – all these

links are useful to the caregiver. A variety of categories neatly

organized into folders – what topic are you interested in? Find the

folder and within it find numerous links to other websites for

additional information.)

Files Section:

http://health.groups.yahoo.com/group/LBDcaregivers/files/

(Read other caregiver's stories, read about the good & bad drugs

here, print a " companion card " from here (cards to hand out in public

areas about your LO's behavior), find the locations of other

caregivers who are possibility living in your immediate area, etc.)

Database Section:

http://health.groups.yahoo.com/group/LBDcaregivers/database

(Suggested reading, learn the common denominators about our loved

ones, medical referrals, nursing home referrals, bibliography of LBD

in literature and film, etc.)

Photos Section:

http://health.ph.groups.yahoo.com/group/LBDcaregivers/photos

(Put a face to a name.)

Polls Section:

http://health.groups.yahoo.com/group/LBDcaregivers/polls

(Several polls running re: LBD)

That should get you started... Come back and update us.

; loving daughter of Maureen of Boston, MA; dx'd with LBD in

2/2006; fell victim to rapid decline from Risperidone; Was successful

on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept.

30th, 2006.

April 30, 2007

No, of course not, that would be too smart. LOL With the exception

of the ending (links to the different sections on LBDCaregivers board --

finally learned to cut/paste from FAQ document) it's all free hand.

But HEY thanks for the idea!

>

> , this is excellent information. Do you always keep copies

of the

> emails you send?

>

May 4, 2007

Dear Marsha,

I have been away for a while and just now reading your message. You are

clearly a devoted daughter and a great advocate for your mom. LBD is a horrible

disease and you and your dad are seeing it all too clearly in your mom. It is

wonderful you have come to this site and I am very grateful you've shared your

story. Your mom is experiencing many of the same effects of this disease as my

mom does. She has had the same roller-coaster-type progression. From what I read

and have been told, this does happen. Good for a while, bad for a while. My

mother's dementia and her motor skills all are much worse whenver there is a

physical problem you or I might easily shrug off. For example, her

hallucinations, donfusion and ability to use her hands diminish intensely

whenever she has an infection - sinus, UTI, etc. In fact, these changes in her

generally signal a UTI, blood sugar change, etc.

I don't think too much about " stages " now - LBD is known for all kinds of

fluctuations. I am aware it will get worse, but for many with LBD, the stages

don't appear as clear as they do in other dementias, such as Alzheimer's.

Sounds like you are comfortable with your mom's MD, which is wonderful. I had

to go through 4 docs before finding one who truly understood LBD and who would

tell me what I wanted to know. By now (since I'm a week behind) you've probably

called your mom's MD about hallucinations so intense they keep her up at night.

To paraphrase the writings of Dr. Boeve, one of our LBD Association scientific

advisors and an LBD expert:

doctors can almost always do something to address the effects of this disease.

LBD is bad enough in itself, and not all the symptoms can be managed all the

time; however, the MD should be able to advise you about appropriate meds and

dosages that will allow your mom decent sleep. And even poor-quality sleep - or

sleep deprivation due to hallucination-induced anxiety (as with my mom) - can

worsen the symptoms of the disease.

Worrying about the likelihood of my developing LBD has kept ME up some nights.

I recognize my fears, and then try to let them go. You might want to read

further about this subject via some of the links on this site.

Your mom - and you - will be in my prayers. Please let us know how all of you

are doing.

This is a group of people who really do care!

Peace,

Lin

Marsha Gullett wrote:

Hello

My name is Marsha, my mother has LBD. She was miss diagnosed about 4 or 4 1/2

yrs ago with Alzheimer's. In the past 2 years she has really gone down hill. A

year and a half ago we changed her doctor because she was just getting so much

worse and my dad and I thought that there was something else wrong with her. We

didn't think she had Alzheimer's. She had more symptoms of Parkinson's disease.

My mother is now 54 yrs old.

Once she had a new doctor he studied her file, talked with her, talked with my

dad and I and done some testing. He agreed that this was more than just

Alzheimer's and he lowered her dosage of the Aircept. And make us a follow up

appointment.

Within the next 3 months her condition worsened. She started shuffling her feet,

having dissolution's and her hands with had been shaking for over a year or so

was now to the point that she couldn't hold anything without dropping it,

couldn't open a coke bottle. She had also gotten to the point that she couldn't

remember how to cook, use the washer, and was unable to read directions and even

write her name.

In April of 2006 we carried her to the doctor, she was extremely week. They

admitted her into the hospital said that she was dehydrated and her calcium

level was high. While in the hospital she started having hallucinations. Once

she went home from the hospital a few days later her hallucinations seemed to

stop for a little while.

Within a month the hallucinations started again, she was back to a gate walk and

had a slur when she talked. On June 5, 2006 we carried her to the doctor he

admitted her to the hospital her calcium level was high again and she was

dehydrated again. She couldn't hardly talk, head just kinda hung down all the

time. Once in the hospital they started her on lacects and the doctor just

wanted to watch her and monitor her for a day or so. Daddy stayed with her the

first night and when I we up on Tuesday she seemed alot better. I stayed with

her that night so daddy could go home and rest. Well our night started off

pretty good. But as the night went on she couldn't sleep, her hallucinations

were terrible, she got to the point that she couldn't get up to go to the

bathroom on her own. Couldn't see the toilet when we helped her to the bathroom.

Couldn't see the toilet paper even when you put it in her hand. By morning she

was unable to feed herself, I would put a straw in

her mouth trying to get her to drink and I would have to tell her to suck on the

straw. I had to demonstrate how to do that. She had lost all knowledge of how to

eat, drink, suck and even swallow. At 7:30 am they brought breakfast in an while

I was feeding her she forgot who I was. She started yelling for the nurse to get

me out of her room. The nurse told her that I was her daughter and that it was

ok. She told the nurse that I was not her daughter and to get me out of there.

By then I had just broke down I couldn't stand it, I stood outside of her door

the nurse stayed in there with her so she wouldn't fall and hurt herself . She

kept trying to get out of bed to go home and she couldn't even walk. I called my

step-daughter , called my dad, and my sisters and my brother. I was so upset and

thought that we were close to the end. It was a terrible night . My

step-daughter got there first she working just 30 minutes from the hospital.

When my step-daughter walk in the room

mother knew who she was. She told her to make me get out her room. I stayed

outside her room and waited on my daddy when he got there she calmed down just a

little when the doctor got there he gave her an antisicotic drug and she started

trying to dose a little . By 3:00 that Wed. afternoon she finally went to sleep

and daddy stayed with her that night. The following day the doctor told us that

mother did not have Alzheimer's that she had LBD and a parathyroid which was

producing too much calcium in her body. He wanted her to see a endocrinologist

for the parathyroid and he also changed her medication. He started her on exolon

and serquol.

After seeing the endocrinologist and running some test over the next few months

he done surgery on November the 9th. Went back in December and she was alot

better. In January we took her back to her regular doctor he agreed she was alot

better. She was able to walk, no shuffle or gate walk, she could talk no slur,

she was back to feeding herself, she still didn't have a control of her hands

but she was soooo much better.

It is now April 26th 2007. We carried mother back to the doctor 2 days ago I

have been talking to her doctor over the past month because mothers

hallucinations have started getting bad again, She wakes up during the night and

don't know where she is, She see's things in the bed that aren't there she

thinks that daddy is making her sleep in a different house every night. They

live in the same house that they build together when they first got married. Its

the only house they have ever lived in. She tells everyone that " that is not her

house, she doesn't know who's house it is but it's not hers " . " She wants to go

home " .

I have 2 sisters and a brother my brother is the youngest, he is 26 yrs old. She

wakes up during the night tells daddy to check on the baby, or to check on the

kids. She has many episodes where she thinks we are all still babies. She see's

babies, and looks for babies.

For several weeks she walked around looking for glass in her hands. She told

everyone that she had some green glass in her hands and that none of us would

get it out. (There was no glass). She see's people out the window in her back

yard and she takes off after them. She can't read anymore, can't write her own

name, she can't cook, do any household duties, she can't dress herself anymore.

She does take a shower on her own but daddy usually has to help her wash her

hair. For the past year she is never left alone, someone is always with her. If

she wants to go to town , she goes but is never left in the car alone afraid she

might get out and wonder off. When you take her in the grocery store or Wal-Mart

you have to watch her closely or she will wonder off from you there.

When we seen the doctor this week he upped her dosage of Seroquel to 150mg in

the morning and 150mg at night. If she isn't sleeping better and is still having

frequent hallucinations he told me to give him a call back.

I had many questions for the doctor that he will never answer in front of

mother, so daddy took her out and I stayed behind to talk to him . I asked him

if he could give her something for anxiety because she gets upset when she has

these hallucinations. And she worries about what she see's and the fact that

none of us see it. He told me no that he really didn't want to give her anything

else right now . The seroquel was working ok and he upped her dosage and we

would just wait to see how she does.

Then I asked him if this disease was hereditary? He said he couldn't answer that

and be 100% because there isn't alot of medical info out there. But he did

believe that my brother and 2 sisters and myself were 3 times more likely to

develop LBD than my kids or my grand kids.

Then I asked if LBD had stages like Alzheimer's disease? If so what stage was my

mother in? I wanted to know what was ahead down the road? I didn't want to sound

like a terrible daughter for asking but I really believe that we should know

whats gonna happen or could happen. Well he told me that he believed that mother

was in the sever stages of this disease and that he believed that within the

next year to 2 yrs that she would be completely bed ridden and dependent on us

for everything. He said that she would become unable to get out of bed, to sit

up, she wouldn't be able to feed herself, bath herself, go to the bathroom,

unable to even roll over. He said that when this happens that this is usually

the end because the patient usually develops pneumonia, or kidneys fell , their

heart may shut down . He said that the disease has really progressed in the past

year with her and he couldn't say for sure but looking back over the past year

and even the past 6 months he

really couldn't see her making it more than a couple more years at the most.

I was grateful for his honesty, I told daddy when we got home what the doctor

had said and it upset him , he doesn't want me to tell my grandparents . I told

by brother and sisters and they really didn't have anything to say. My dad and I

take care of my mother , and my grandmother helps us too. The 3 of us see

everyday how she is and how some days she seems fine and some days she seems to

be knocking on deaths door. I have one sister who lives 30 mins away and she

comes around maybe once every 2 months. She acts like there is nothing wrong

with our mother. How she can't see or don't want to see it I don't understand.

My other sister who is 29 was just diagnosed with colon cancer , she is

currently taking chemo and I understand she is sick and don't feel like coming

around alot and she can't help with mother, but my other sister and my brother

could help us out more than they do. They don't think the doctor knows what he

is talking about because they have never

heard of LBD. I have given them pamphlets, any info I could get off the Internet

I printed or directed them to the web site. No use ! They see what they want to

see. They do what they want to do and helping us with mother isn't on their list

of to do's. My dad has had 2 strokes his last one was almost 7 yrs ago. He has

really been strong for mother and is doing great but I worry so much about him

because I know it is alot of stress I am there too. But he doesn't get any rest

because at night she is up sooo much. I've stayed with them a couple of nights

but that seems to make it worse cause she wakes and thinks she is at my house

and then when she understands that she is in her home she worries about why I'm

there. I should be home with my kids.

Its just alot of stress ! It has been good to set here and just type away. Half

of what I wrote may not make any sense to any of you . But I feel better a few

tears, and just being able to vent. Thanks for listening(reading).

Marsha

---------------------------------

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May 4, 2007

Thanks for the supportive email. It's great to finally have people to talk to

that know what your going through. Its alot of work, alot of stress and pain

having a loved one with this disease. And I can't help but get a little upset

sometimes with people (friends,past co-workers , school mates, etc.) that ask

how is your mom? I mean I don't know what to tell them. When you tell them that

she has LBD, they look at you like your crazy and ask what is that? Then when

you do give them the run down of what is going on with your mom they tell you

they know what your going through. When in reality they don't know. They have

never even heard of the disease.

I have learned alot just reading the posts from caregivers. I am greatful

that I found this group. I just found it last week and it is helpful reading how

people deal with different situations, the informantion on different meds, and

all of the different LBD links that this group has provided. I really wish there

was as much public knowledge, benefits and study of LBD as there is of

Alzheimer's and Parkinson's disease, especially since most LBD patients are miss

diagnosed with Alzheimer's or Parkinson's.

Well enough of my rambling... Thanks for email and all my best to you and your

mom.

l pratt wrote:

Dear Marsha,

I have been away for a while and just now reading your message. You are clearly

a devoted daughter and a great advocate for your mom. LBD is a horrible disease

and you and your dad are seeing it all too clearly in your mom. It is wonderful

you have come to this site and I am very grateful you've shared your story. Your

mom is experiencing many of the same effects of this disease as my mom does. She

has had the same roller-coaster-type progression. From what I read and have been

told, this does happen. Good for a while, bad for a while. My mother's dementia

and her motor skills all are much worse whenver there is a physical problem you

or I might easily shrug off. For example, her hallucinations, donfusion and

ability to use her hands diminish intensely whenever she has an infection -

sinus, UTI, etc. In fact, these changes in her generally signal a UTI, blood

sugar change, etc.

I don't think too much about " stages " now - LBD is known for all kinds of

fluctuations. I am aware it will get worse, but for many with LBD, the stages

don't appear as clear as they do in other dementias, such as Alzheimer's.

Sounds like you are comfortable with your mom's MD, which is wonderful. I had to

go through 4 docs before finding one who truly understood LBD and who would tell

me what I wanted to know. By now (since I'm a week behind) you've probably

called your mom's MD about hallucinations so intense they keep her up at night.

To paraphrase the writings of Dr. Boeve, one of our LBD Association scientific

advisors and an LBD expert:

doctors can almost always do something to address the effects of this disease.

LBD is bad enough in itself, and not all the symptoms can be managed all the

time; however, the MD should be able to advise you about appropriate meds and

dosages that will allow your mom decent sleep. And even poor-quality sleep - or

sleep deprivation due to hallucination-induced anxiety (as with my mom) - can

worsen the symptoms of the disease.

Worrying about the likelihood of my developing LBD has kept ME up some nights. I

recognize my fears, and then try to let them go. You might want to read further

about this subject via some of the links on this site.