Mom is getting worse

January 15, 2003

It has been happening for awhile now. Her hallucinations started coming back.

We upped the dose of Reminyl to 12mg twice a day. It didn't seem to have an

effect, but sometimes it takes a while to notice so we plugged on. The next

appointment we started Apo-Levocarb (generic Sinemet) as mom was complaining

alot about her shaking and movement. She is now up to 3 times a day. The

problem is the hallucinations have not gotten better but have increased more.

She is seeing babies and children (often they have no clothes on), she is seeing

dogs (particularly a black one that pees in the corner), a big spider that

resides in her bathroom, people who will not leave the house (this is the one

that disturbed her so much last time that we placed her in a senior's residence

and awaited a diagnosis) before we found out what was wrong. She is buying

clothes for the children, worrying about the fact that they are cold. Now she

is feeding them by leaving out bowls of cheerios. Last night the caregiver told

me mom isn't eating much and she takes food off her plate and puts it on other

plates to feed the children.

At 10:30 she called to tell me she was really upset that the caregiver had sat

on the baby. I tried to explain that there isn't anything to worry about,

because the baby isn't real...I was really tired and after explaining that she

should go to bed, because she has her group (adult day program) tomorrow, that

she needs some rest, I hung up and went to bed myself.

At 1:20 am the phone rang and it was the caregiver saying mom is trying to get

the front door open. She has not slept. I went in and found that mom had

locked the outside storm door (and I couldn't get in) and so they had to

struggle with it to find the little button to push over to let me in. When I

finally get in, I take a long thin chisel off my mom. She said she was trying

to open the door with it. She couldn't find the " children " . I tried to get her

to go to the bedroom to get into her diaper and pjs but she said she had to go

pee. All the way there she is seeing people and talking to them telling them to

leave, chastising children for behavior etc. When she comes down, I manage to

get her into her diaper and pjs and try to get her to lie down in the bed.

Believe it or not, it took almost a half hour just to get her to lie down in the

bed. She was lying sideways, then she would get up saying it was lumpy (she has

folded blankets to stop the bed from getting wet, even though she has a wet pad

on the bed as well.) I took that off and tried again to get her settled. I

thought if I lay down with her and rubbed her back perhaps she would relax and

drift off into sleep. I couldn't seem to get her to lie on her side so as I was

beside her I reached around to pull her up on the bed toward the pillow and she

screams out in pain saying that I " broke her rib " . She says she heard something

crack. I don't know if it is possible for me to have done that, she is pretty

frail but I don't think so. She went on and on, between how I was plotting to

have her put away, begging me not to do it, talking to the children, complaining

about the caregiver, saying " who's that? " to the darkness. She also said " don't

take that chisel away, I need that. " All the while I a trying to just say

" shhh, get some rest " in a calm quiet voice. She complained about the bed,

about me being too close to her, that the blankets are too heavy...it was like

being with my two year old.

Finally, I couldn't stand the heat (must have been 100 degrees in that room) and

I was thirsty so I got up quietly and went to the kitchen for a drink. She

called out " I know you are plotting something, I will hate you forever if you do

that to me " " I will never forgive you " . I said " I am only getting a drink of

water and I am going to sit on the couch as I am too hot in there. I sat for

awhile listening to her talk to herself wishing with all my might that she

didn't have this dreaded disease and wondered what morning with bring. I sat

there for another half hour and finally got up and put on my coat. I said in a

quiet voice " mom, I am going to go home now (I live next door). She said okay.

I made her promise that she wouldn't get up (how ridiculous is that! but it was

3 am and I guess I wasn't reasoning well either). She said she would stay in

bed and I left wondering if she really would or if the caregiver would call me

again in a short while. I told her that if she wanted she could still go to her

group, and that I would try to get a bottle to test for a UTI. She said she

thought I should ask for a chest xray as well. (she had 3 done in the last

year, probably enough for a lifetime). I told her I didn't think that was

necessary.

I got home and went directly to bed. Then I lay away for a couple more hours

before falling asleep. My husbands alarm went off at 7 and I have been up

since. I have been questioning what to do next. I am wondering first off if

she has a UTI so I plan to at least have that ruled out. I want to call the

doctor about what has been going on with the hallucinations but would like to go

somewhat prepared. If she is on the highest dose of Reminyl already, would it

benefit to switch her to another such drug such as Exelon? (Hey Russ, perhaps

you might comment on your experience with this?) I know that I could probably

ask for Serequel, but I am worried that it may cause more problems than help

her. I wonder also if I should perhaps cut down on her apo-levocarb to 3 half

pills a day to see if that helps at all. She hates taking pills and blames

everything on them not on Lewy Bodies. She says over and over that it must be

something in the pills. She says she is exhausted, but wont take a sleeping

pill. She says the hallucinations don't bother her, but how can she continue to

live like this? I am overwhelming sad. I can't believe that a month ago she

was at our open house chatting to people and socializing and has taken a nose

dive. Her eyes have also been sore (she refused the dry eye ointment and after

awhile the caregiver stopped offering it). I have gotten that back on track, and

she is getting it in her eye now, but it is only one more thing to go wrong.

She complained that her nose is really running and she is droolling and feeling

off balance and it must be the pills, she says!

It is so heartbreaking as I cannot keep saying to her that that is a sign of

LBD. She still denies that she has that problem and says no one ever told her

she has it...

I have to go check on her now and begin my day. Any advice or thoughts are

welcome.

Kath in Toronto

January 16, 2004

Okay you just gave me my first smile today as I pictured the Kentucky Fried

Chicken thing...thanks. I am in the process of having one of the worse

emotional days I have had in a while. I have cried 3 times today. I had a

horrendous fight over pants with my mother this a.m. which lead to me

sobbing my head off, then I heard that a former daycare child had died

(nasty rumor that turned out to be false thank goodness), then I find out at

5 pm that the weekend caregiver isn't coming...arrrrrgh! I am in the

process of waiting to see if the agency can send another, but it doesn't

look good for tonight. I am definitely in a mood to crawl under a rock and

stay there. The only thing that kept me sane all day was the thought that I

was going to come home and drink copious amounts of wine until I went to

sleep. Now I am back to facing reality and it is not a pretty sight.

Mom is seeing a geriatric psychiatrist and he is quite nice. The problem is

that we only get to see him every 3 months or so. It is a bit frustrating

when problems arise. The family doctor is a good guy but I don't think he

knows much about Lewy Body desease as he lets on. I am educating him as

much as he will let me. We see the psychiatrist in Feb, I think.

Anyway I have got to go, my daughter has informed me we have no margerine

for the rice, my husband has not left work, so he wont be home for another

hour yet and the agency has not called. My daughter has pulled a muscle in

her leg and can't go to the corner store, too dark anyway and I don't want

to leave the house for fear I will miss a caregiver calling.

Man I must have been pretty bad in a former life to deserve this.

Sad Kath in Toronto

Re: Mom is getting worse

> Good morning Kath,

>

> I live in the San Francisco Bay Area in California. I see you live in

Toronto. If

> your insurance covers it, and you do not yet have a psychiatrist, I would

really

> recommend one. This disease is not just about the physical. Reading the

> posts and from my experience, the worst aspect is the emotional /

> psychological aspect. I would think any good psychiatrist, especially one

> tuned into geriatric or Alzheimer's type disease could be of help. Of

course

> one with experience with LBD would be perfect (in a perfect world of

course).

>

> I do not post very often, only when one leaps out at me and grabs my

heart,

> such as yours did. I felt your pain, and have been there. Just as a funny

aside,

> when my father was alive (he died in May from a fall) he believed

everything

> my mother said, his denial was unbelievable. He use to go to buy Kentucky

> Fried Chicken for the 20 people mother imagined were coming over. And then

> get mad when they did not show up. It was so frustrating dealing with both

of

> them! I have been through the " mill " the same as all of us have.

>

> Best of luck to you and your mom on your journey.

>

> > > > It has been happening for awhile now. Her hallucinations started

> coming

> > > back. We upped the dose of Reminyl to 12mg twice a day. It didn't

seem

> > to

> > > have an effect, but sometimes it takes a while to notice so we plugged

on.

> > > The next appointment we started Apo-Levocarb (generic Sinemet) as

> mom

> > > was complaining alot about her shaking and movement. She is now up to

> 3

> > > times a day. The problem is the hallucinations have not gotten better

but

> > have

> > > increased more. She is seeing babies and children (often they have no

> > > clothes on), she is seeing dogs (particularly a black one that pees in

the

> > > corner), a big spider that resides in her bathroom, people who will

not

> > leave

> > > the house (this is the one that disturbed her so much last time that

we

> > placed

> > > her in a senior's residence and awaited a diagnosis) before we found

out

> > > what was wrong. She is buying clothes for the children, worrying

about

> > the

> > > fact that they are cold. Now she is feeding them by leaving out bowls

of

> > > cheerios. Last night the caregiver told me mom isn't eating much and

she

> > > takes food off her plate and puts it on other plates to feed the

children.

> > > >

> > > > At 10:30 she called to tell me she was really upset that the

caregiver

> > had sat

> > > on the baby. I tried to explain that there isn't anything to worry

about,

> > because

> > > the baby isn't real...I was really tired and after explaining that she

> > should go to

> > > bed, because she has her group (adult day program) tomorrow, that she

> > > needs some rest, I hung up and went to bed myself.

> > > >

> > > > At 1:20 am the phone rang and it was the caregiver saying mom is

trying

> > to

> > > get the front door open. She has not slept. I went in and found that

mom

> > had

> > > locked the outside storm door (and I couldn't get in) and so they had

to

> > > struggle with it to find the little button to push over to let me in.

> > When I finally

> > > get in, I take a long thin chisel off my mom. She said she was trying

to

> > open

> > > the door with it. She couldn't find the " children " . I tried to get

her

> > to go to the

> > > bedroom to get into her diaper and pjs but she said she had to go pee.

> > All the

> > > way there she is seeing people and talking to them telling them to

leave,

> > > chastising children for behavior etc. When she comes down, I manage

to

> > get

> > > her into her diaper and pjs and try to get her to lie down in the bed.

> > Believe it

> > > or not, it took almost a half hour just to get her to lie down in the

bed.

> > She was

> > > lying sideways, then she would get up saying it was lumpy (she has

folded

> > > blankets to stop the bed from getting wet, even though she has a wet

pad

> > on

> > > the bed as well.) I took that off and tried again to get her settled.

I

> > thought if I

> > > lay down with her and rubbed her back perhaps she would relax and

drift

> > off

> > > into sleep. I couldn't seem to get her to lie on her side so as I was

> > beside her I

> > > reached around to pull her up on the bed toward the pillow and she

> screams

> > > out in pain saying that I " broke her rib " . She says she heard

something

> > crack.

> > > I don't know if it is possible for me to have done that, she is pretty

> > frail but I

> > > don't think so. She went on and on, between how I was plotting to

have

> > her

> > > put away, begging me not to do it, talking to the children,

complaining

> > about

> > > the caregiver, saying " who's that? " to the darkness. She also said

" don't

> > take

> > > that chisel away, I need that. " All the while I a trying to just say

> > " shhh, get

> > > some rest " in a calm quiet voice. She complained about the bed, about

> me

> > > being too close to her, that the blankets are too heavy...it was like

> > being with

> > > my two year old.

> > > >

> > > > Finally, I couldn't stand the heat (must have been 100 degrees in

that

> > room)

> > > and I was thirsty so I got up quietly and went to the kitchen for a

drink.

> > She

> > > called out " I know you are plotting something, I will hate you forever

if

> > you do

> > > that to me " " I will never forgive you " . I said " I am only getting a

> > drink of water

> > > and I am going to sit on the couch as I am too hot in there. I sat

for

> > awhile

> > > listening to her talk to herself wishing with all my might that she

didn't

> > have

> > > this dreaded disease and wondered what morning with bring. I sat

there

> > for

> > > another half hour and finally got up and put on my coat. I said in a

> > quiet voice

> > > " mom, I am going to go home now (I live next door). She said okay. I

> > made

> > > her promise that she wouldn't get up (how ridiculous is that! but it

was 3

> > am

> > > and I guess I wasn't reasoning well either). She said she would stay

in

> > bed

> > > and I left wondering if she really would or if the caregiver would

call me

> > again

> > > in a short while. I told her that if she wanted she could still go to

her

> > group,

> > > and that I would try to get a bottle to test for a UTI. She said she

> > thought I

> > > should ask for a chest xray as well. (she had 3 done in the last

year,

> > probably

> > > enough for a lifetime). I told her I didn't think that was necessary.

> > > >

> > > > I got home and went directly to bed. Then I lay away for a couple

more

> > > hours before falling asleep. My husbands alarm went off at 7 and I

have

> > been

> > > up since. I have been questioning what to do next. I am wondering

first

> > off if

> > > she has a UTI so I plan to at least have that ruled out. I want to

call

> > the doctor

> > > about what has been going on with the hallucinations but would like to

go

> > > somewhat prepared. If she is on the highest dose of Reminyl already,

> > would it

> > > benefit to switch her to another such drug such as Exelon? (Hey Russ,

> > > perhaps you might comment on your experience with this?) I know that

I

> > > could probably ask for Serequel, but I am worried that it may cause

more

> > > problems than help her. I wonder also if I should perhaps cut down on

her

> > > apo-levocarb to 3 half pills a day to see if that helps at all. She

hates

> > taking

> > > pills and blames everything on them not on Lewy Bodies. She says over

> and

> > > over that it must be something in the pills. She says she is

exhausted,

> > but

> > > wont take a sleeping pill. She says the hallucinations don't bother

her,

> > but

> > > how can she continue to live like this? I am overwhelming sad. I

can't

> > believe

> > > that a month ago she was at our open house chatting to people and

> > > socializing and has taken a nose dive. Her eyes have also been sore

> (she

> > > refused the dry eye ointment and after awhile the caregiver stopped

> > offering

> > > it). I have gotten that back on track, and she is getting it in her

eye

> > now, but it is

> > > only one more thing to go wrong. She complained that her nose is

really

> > > running and she is droolling and feeling off balance and it must be

the

> > pills,

> > > she says!

> > > >

> > > > It is so heartbreaking as I cannot keep saying to her that that is a

> > sign of

> > > LBD. She still denies that she has that problem and says no one ever

told

> > her

> > > she has it...

> > > >

> > > > I have to go check on her now and begin my day. Any advice or

> thoughts

> > > are welcome.

> > > >

> > > > Kath in Toronto

> > > >

January 17, 2004

Hi Kath, Just wanted to suggest that somehow (even through a letter) you let

the psychiatrist know just what you are dealing with on a daily basis with your

mother. How much her life and your life are being affected. Then, he would

have a real good basis for medicating her. I use to talk on the phone to my

mother's psychiatrist. When I took her in to see him, it was too hard to talk in

front of her.

I also wanted to let you know what saved my life and her life. Somehow (I

believe it was a " God " thing) we connected with a group of people from Fiji.

They are in the states living with each other and taking care of people like my

mother. There are groups of people from other islands also. We met some

from Tonga. My mother has a full time 24/7 caregiver for $100/day. When she

needs time off, she arranges to have another woman come in to care for my

mom. Like I said before, my father died in May of 2003 suddenly. I have a

sister who died in Nov. of 2000, and another sister who lives next door to my

mother. We both have obtained such relief from this situation. My mother has

a lot of anxiety and is afraid to be alone, the caregiver takes such good care

of

her. Bathing, dressing, feeding, watching TV with her, etc. So, even with LBD,

my life now is back in my hands. I had 2 years of pure hell. I know it isn't

over

yet, but on a daily basis, life is so much better. I really like the arrangement

with the caregiver. She makes it her responsibility to be sure mom has 24/7

care. Read you post, hope you had a nice evening out.

Hang in there!!!

> > > > > It has been happening for awhile now. Her hallucinations started

> > coming

> > > > back. We upped the dose of Reminyl to 12mg twice a day. It didn't

> seem

> > > to

> > > > have an effect, but sometimes it takes a while to notice so we plugged

> on.

> > > > The next appointment we started Apo-Levocarb (generic Sinemet) as

> > mom

> > > > was complaining alot about her shaking and movement. She is now

up to

> > 3

> > > > times a day. The problem is the hallucinations have not gotten better

> but

> > > have

> > > > increased more. She is seeing babies and children (often they have

no

> > > > clothes on), she is seeing dogs (particularly a black one that pees in

> the

> > > > corner), a big spider that resides in her bathroom, people who will

> not

> > > leave

> > > > the house (this is the one that disturbed her so much last time that

> we

> > > placed

> > > > her in a senior's residence and awaited a diagnosis) before we found

> out

> > > > what was wrong. She is buying clothes for the children, worrying

> about

> > > the

> > > > fact that they are cold. Now she is feeding them by leaving out bowls

> of

> > > > cheerios. Last night the caregiver told me mom isn't eating much and

> she

> > > > takes food off her plate and puts it on other plates to feed the

> children.

> > > > >

> > > > > At 10:30 she called to tell me she was really upset that the

> caregiver

> > > had sat

> > > > on the baby. I tried to explain that there isn't anything to worry

> about,

> > > because

> > > > the baby isn't real...I was really tired and after explaining that she

> > > should go to

> > > > bed, because she has her group (adult day program) tomorrow, that

she

> > > > needs some rest, I hung up and went to bed myself.

> > > > >

> > > > > At 1:20 am the phone rang and it was the caregiver saying mom is

> trying

> > > to

> > > > get the front door open. She has not slept. I went in and found that

> mom

> > > had

> > > > locked the outside storm door (and I couldn't get in) and so they had

> to

> > > > struggle with it to find the little button to push over to let me in.

> > > When I finally

> > > > get in, I take a long thin chisel off my mom. She said she was trying

> to

> > > open

> > > > the door with it. She couldn't find the " children " . I tried to get

> her

> > > to go to the

> > > > bedroom to get into her diaper and pjs but she said she had to go pee.

> > > All the

> > > > way there she is seeing people and talking to them telling them to

> leave,

> > > > chastising children for behavior etc. When she comes down, I

manage

> to

> > > get

> > > > her into her diaper and pjs and try to get her to lie down in the bed.

> > > Believe it

> > > > or not, it took almost a half hour just to get her to lie down in the

> bed.

> > > She was

> > > > lying sideways, then she would get up saying it was lumpy (she has

> folded

> > > > blankets to stop the bed from getting wet, even though she has a wet

> pad

> > > on

> > > > the bed as well.) I took that off and tried again to get her settled.

> I

> > > thought if I

> > > > lay down with her and rubbed her back perhaps she would relax and

> drift

> > > off

> > > > into sleep. I couldn't seem to get her to lie on her side so as I was

> > > beside her I

> > > > reached around to pull her up on the bed toward the pillow and she

> > screams

> > > > out in pain saying that I " broke her rib " . She says she heard

> something

> > > crack.

> > > > I don't know if it is possible for me to have done that, she is pretty

> > > frail but I

> > > > don't think so. She went on and on, between how I was plotting to

> have

> > > her

> > > > put away, begging me not to do it, talking to the children,

> complaining

> > > about

> > > > the caregiver, saying " who's that? " to the darkness. She also said

> " don't

> > > take

> > > > that chisel away, I need that. " All the while I a trying to just say

> > > " shhh, get

> > > > some rest " in a calm quiet voice. She complained about the bed,

about

> > me

> > > > being too close to her, that the blankets are too heavy...it was like

> > > being with

> > > > my two year old.

> > > > >

> > > > > Finally, I couldn't stand the heat (must have been 100 degrees in

> that

> > > room)

> > > > and I was thirsty so I got up quietly and went to the kitchen for a

> drink.

> > > She

> > > > called out " I know you are plotting something, I will hate you forever

> if

> > > you do

> > > > that to me " " I will never forgive you " . I said " I am only getting a

> > > drink of water

> > > > and I am going to sit on the couch as I am too hot in there. I sat

> for

> > > awhile

> > > > listening to her talk to herself wishing with all my might that she

> didn't

> > > have

> > > > this dreaded disease and wondered what morning with bring. I sat

> there

> > > for

> > > > another half hour and finally got up and put on my coat. I said in a

> > > quiet voice

> > > > " mom, I am going to go home now (I live next door). She said okay. I

> > > made

> > > > her promise that she wouldn't get up (how ridiculous is that! but it

> was 3

> > > am

> > > > and I guess I wasn't reasoning well either). She said she would stay

> in

> > > bed

> > > > and I left wondering if she really would or if the caregiver would

> call me

> > > again

> > > > in a short while. I told her that if she wanted she could still go to

> her

> > > group,

> > > > and that I would try to get a bottle to test for a UTI. She said she

> > > thought I

> > > > should ask for a chest xray as well. (she had 3 done in the last

> year,

> > > probably

> > > > enough for a lifetime). I told her I didn't think that was necessary.

> > > > >

> > > > > I got home and went directly to bed. Then I lay away for a couple

> more

> > > > hours before falling asleep. My husbands alarm went off at 7 and I

> have

> > > been

> > > > up since. I have been questioning what to do next. I am wondering

> first

> > > off if

> > > > she has a UTI so I plan to at least have that ruled out. I want to

> call

> > > the doctor

> > > > about what has been going on with the hallucinations but would like to

> go

> > > > somewhat prepared. If she is on the highest dose of Reminyl already,

> > > would it

> > > > benefit to switch her to another such drug such as Exelon? (Hey Russ,

> > > > perhaps you might comment on your experience with this?) I know

that

> I

> > > > could probably ask for Serequel, but I am worried that it may cause

> more

> > > > problems than help her. I wonder also if I should perhaps cut down on

> her

> > > > apo-levocarb to 3 half pills a day to see if that helps at all. She

> hates

> > > taking

> > > > pills and blames everything on them not on Lewy Bodies. She says

over

> > and

> > > > over that it must be something in the pills. She says she is

> exhausted,

> > > but

> > > > wont take a sleeping pill. She says the hallucinations don't bother

> her,

> > > but

> > > > how can she continue to live like this? I am overwhelming sad. I

> can't

> > > believe

> > > > that a month ago she was at our open house chatting to people and

> > > > socializing and has taken a nose dive. Her eyes have also been sore

> > (she

> > > > refused the dry eye ointment and after awhile the caregiver stopped

> > > offering

> > > > it). I have gotten that back on track, and she is getting it in her

> eye

> > > now, but it is

> > > > only one more thing to go wrong. She complained that her nose is

> really

> > > > running and she is droolling and feeling off balance and it must be

> the

> > > pills,

> > > > she says!

> > > > >

> > > > > It is so heartbreaking as I cannot keep saying to her that that is a

> > > sign of

> > > > LBD. She still denies that she has that problem and says no one ever

> told

> > > her

> > > > she has it...

> > > > >

> > > > > I have to go check on her now and begin my day. Any advice or

> > thoughts

> > > > are welcome.

> > > > >

> > > > > Kath in Toronto

> > > > >

January 17, 2004