New to the group

[Guest guest]

You mention he thinks she is divorcing him... Yesterday my dad asked

my mom well did the divorce go ok she asked what are you talking

about he said didnt you divorce me? He asked me the same thing

wondering if my mom divorced him. So many things alike so many

things different.....

> Hi, my name is . My Dad was diagnosed with Lewy Body about 7

years ago even though he had a lot of the symptoms prior to that.

He is 68 years old and up to three weeks ago lived at home with my

Mom taking care of him. He is now in an assisted living facility.

>

> While it became so difficult for my Mom to care of him at home she

is now questioning whether she made the right choice in placing him

in assisted living. Dad is so agitated. Even though he had many

days of agitation at home, it is more pronounced since being in the

facility. On Mom's daily visits he questions her love for him,

thinks she is divorcing him and that he is losing his family (I am

one of his six children). He doesn't trust the care givers at the

facility, thinks they are all " out to get him " , and has lost 12

pounds in the last three weeks because he refuses to eat. Mom

reassures him of her love for him (they were high school sweethearts

and have been married 48 years) and speaks of the care givers at the

facility as being part of our extended family all there to take care

of him.

>

> I live in Missouri, my parents are in Michigan. I visit as often

as I can and talk to my Mom at least once a day. She is in such

pain and I don't know how to help. She agonizes over everything and

has so many questions as to what would be best for Dad. I thought

asking you in the group some of the questions she has posed to me

might help her in her decision making or at least bring her some

comfort.

>

> For those of you who have/had a loved one in a nursing/assisted

living facility -- did they even settle in? Stop questioning why

they were there (Dad even plots his escape often)? Or did you find

this all just part of the disease that continued?

>

> Did anyone ever bring a loved one back home after having been

placed in a nursing home? Mom is considering this and bringing more

home health care in.

>

> My Dad is on several medications (Excelon, Namenda, etc.) which

seem to be helping less and less. My Mom questions whether taking

him off the medications would be a kinder thing to do for Dad at

this point. Perhaps it would bring him more peace. Dad's doctors

have virtually left it up to Mom as they feel that there is no more

they can do for him and in fact are surprised that he has lasted

this long. Has anyone done or considered doing this? Was it

helpful?

>

> I'm grateful for any insight you can give me and thankful that I

have found this group to be a part of.

>

> Thanks,

>

>

>

[Guest guest]

Hi , my name is Adriene and I am also from Missouri. My mother

was diagnosed with LBD about five and a half years ago. I moved

back from college in Pittsburgh to help care for her. This past

June we decided to place mom in a dementia care facility after it

became too much. The two of us tried to keep her at home as long as

possible but at the end even the help of a care taker wasn't

enough. We began to fear for her safety and wanted her in a

controlled environment. It is definitely a hard decision to make

and I have many moments where I wish we could undo everything but I

know in my heart this was the best decision. While there are only a

few people with LBD at the home, there are trained to deal with

dementia and know what kinds of things they are capable of.

It has been two months since we placed my mother in their care and

it is constantly bringing new things. The initial move was very

hard. She constantly questioned how much we loved her, were we

trying to get rid of her, did dad still love her, was she getting

divorced, had she been bad, etc. All we could do was reassure her

that everything was ok and that she was there because it wasn't

safe

for her to be at home any longer and we would never forgive

ourselves if something bad were to happen to her. At first nothing

we said made any difference, but over time we were able to calm her

for a time. My mother often comments that she is in a place with

crazy people and that they are plotting to kill her. Sometimes she

goes so far as to say the care takers are plotting to get her, that

everyone is " out to get her. " The best thing I have found to

do is

waylay their fears by talking about how nice people are and how they

are doing things we can't do, that they are there to help. Then

we

change the subject to something happier. After a few weeks of her

being in the home we started taking her out a few times a week to go

to dinner, see a movie or run errands. We found this allowed her to

retain some connection with her old life. It also helps to ease the

need they have to " escape " , a feeling my mother has as well.

I do believe this is just part of the disease they have. Anything

new is uncomfortable to them. A lot of this, I believe, is because

they feel vulnerable and are quick to question the motives of anyone

new. Also they are not able to communicate well and feel more

comfortable with those who know them well and who may be able to

anticipate what they are trying to say. This leads me to my next

point. While we have no plans to remove my mother from the home, I

feel I should caution your mother against doing so. Change is a bad

thing for people with this condition because they take a long time

to adapt and because they become confused easily. We were actually

cautioned by the home against ever taking my mother out for more

than a few hours (as in never over night) because she would become

greatly confused. While it will take your father awhile to adapt to

his new environment, it will become a form of stability when he

does. Removing him will only throw him into a state of confusion

once again. At the home my mother is at they take every step to

prevent the patient from being moved to a different place in the

facility because familiarity is everything. While I don't know

how

far along your father is, I do know that the further along they are

the harder it is for them to become used to new things. Removing

him will make it harder when he has to be placed in another home in

the future.

I can definitely relate to your mother's frustrations with the

medications. My mom is on namenda, paxil, levadopa carbadopa (I

could have spelled that one completely wrong) and something else.

We had contemplated taking her off of the namenda because we after

years of aricept (the precursor to namenda) we had seen nothing to

suggest a slowing in the progression of the dementia. I thought

like your mother that maybe it would be kinder to let my mother's

consciousness slip further so she was aware of less. We brought

these concerns to the staff at the home and they recommended

strongly against it. Apparently when this is done the patients have

horrible reactions. While doctors before this had pretty much left

it up to us, the people at this facility have much more experience

with dementia. All 100 patients at the home are at one level or

another of dementia so they have had greater exposure to what

medications do.

I know this is a rather lengthy response but at this point I have

seen so much with mom I could go on forever. I'm sure many can

relate to this.

I hope this helps,

Adriene

[Guest guest]

Adriene,

Thanks for your generous response and sorry I haven't gotten back sooner (I had

out of town guests this weekend). Your experiences and that of others have

really helped me put a lot in perspective.

While this disease is so terrible, it is somewhat comforting to know that others

are experiencing the same things. I continue to be amazed by how many times I

have said, " my Dad does that " while reading other stories from those with LO

suffering from LBD. Since joining the group just last week I have been able to

pass on many things to my mother that have comforted her too in dealing with

Dad.

Dad has been in the dementia assisted living facility a month today. It is

still a rocky road but I suspect it will continue to be (especially from reading

your and other e-mails). My mom and sister and going to try and take Dad out

for dinner tonight (the first time he will have gone anywhere since being in the

facility). He really enjoyed being able to do this while still at home with

Mom, so she is hoping that this will make him feel more " normal " and help with

his depression about being in the facility in the first place. I'm keeping my

fingers crossed for her and for him.

Thanks again for all your help.

Re: New to the Group

Hi , my name is Adriene and I am also from Missouri. My mother

was diagnosed with LBD about five and a half years ago. I moved

back from college in Pittsburgh to help care for her. This past

June we decided to place mom in a dementia care facility after it

became too much. The two of us tried to keep her at home as long as

possible but at the end even the help of a care taker wasn't

enough. We began to fear for her safety and wanted her in a

controlled environment. It is definitely a hard decision to make

and I have many moments where I wish we could undo everything but I

know in my heart this was the best decision. While there are only a

few people with LBD at the home, there are trained to deal with

dementia and know what kinds of things they are capable of.

It has been two months since we placed my mother in their care and

it is constantly bringing new things. The initial move was very

hard. She constantly questioned how much we loved her, were we

trying to get rid of her, did dad still love her, was she getting

divorced, had she been bad, etc. All we could do was reassure her

that everything was ok and that she was there because it wasn't

safe

for her to be at home any longer and we would never forgive

ourselves if something bad were to happen to her. At first nothing

we said made any difference, but over time we were able to calm her

for a time. My mother often comments that she is in a place with

crazy people and that they are plotting to kill her. Sometimes she

goes so far as to say the care takers are plotting to get her, that

everyone is " out to get her. " The best thing I have found to

do is

waylay their fears by talking about how nice people are and how they

are doing things we can't do, that they are there to help. Then

we

change the subject to something happier. After a few weeks of her

being in the home we started taking her out a few times a week to go

to dinner, see a movie or run errands. We found this allowed her to

retain some connection with her old life. It also helps to ease the

need they have to " escape " , a feeling my mother has as well.

I do believe this is just part of the disease they have. Anything

new is uncomfortable to them. A lot of this, I believe, is because

they feel vulnerable and are quick to question the motives of anyone

new. Also they are not able to communicate well and feel more

comfortable with those who know them well and who may be able to

anticipate what they are trying to say. This leads me to my next

point. While we have no plans to remove my mother from the home, I

feel I should caution your mother against doing so. Change is a bad

thing for people with this condition because they take a long time

to adapt and because they become confused easily. We were actually

cautioned by the home against ever taking my mother out for more

than a few hours (as in never over night) because she would become

greatly confused. While it will take your father awhile to adapt to

his new environment, it will become a form of stability when he

does. Removing him will only throw him into a state of confusion

once again. At the home my mother is at they take every step to

prevent the patient from being moved to a different place in the

facility because familiarity is everything. While I don't know

how

far along your father is, I do know that the further along they are

the harder it is for them to become used to new things. Removing

him will make it harder when he has to be placed in another home in

the future.

I can definitely relate to your mother's frustrations with the

medications. My mom is on namenda, paxil, levadopa carbadopa (I

could have spelled that one completely wrong) and something else.

We had contemplated taking her off of the namenda because we after

years of aricept (the precursor to namenda) we had seen nothing to

suggest a slowing in the progression of the dementia. I thought

like your mother that maybe it would be kinder to let my mother's

consciousness slip further so she was aware of less. We brought

these concerns to the staff at the home and they recommended

strongly against it. Apparently when this is done the patients have

horrible reactions. While doctors before this had pretty much left

it up to us, the people at this facility have much more experience

with dementia. All 100 patients at the home are at one level or

another of dementia so they have had greater exposure to what

medications do.

I know this is a rather lengthy response but at this point I have

seen so much with mom I could go on forever. I'm sure many can

relate to this.

I hope this helps,

Adriene

Welcome to LBDcaregivers.

[Guest guest]

I was in a 4 car accident 3 years ago and have been treating for neck

pain since then. Today, my attorney called me and told me the

physician that did the medical exam for the defense wanted me to call

him ASAP, even on his cell phone. So, at 8pm I did. He told me that I

was misdiagnosed and I have CM. He told me it was treatable but also

life threatening.

Since then I have been all over the internet searching for

information. I cannot find anything that says that it is life

threatening and everything says it is a birth defect. I am confused.

Have any of you been told that it was CM after a car accident? Was

that the first time you heard of it?

Any help is greatly appreciated.

Terri, California

[Guest guest]

Hi Terri,

Welcome to the group. I was told when diagnosed that it was a birth defect.

It could be brought on by a car accident or trauma or in my case, spinal fluid

fluctuation during surgery.

I think you found the right place to ask questions and get support. The

website is a great place for information.

Take care,

Wyoming

Decompressed May 2002

Detethered April 2006

tmacford wrote:

I was in a 4 car accident 3 years ago and have been treating for neck

pain since then. I am confused.

Have any of you been told that it was CM after a car accident? Was

that the first time you heard of it?

Any help is greatly appreciated.

Terri, California