Re: Re: awareness

December 28, 2007

Thanks . I do feel lucky, in a way, that we got the diagnosis so early

and because of this board I am prepared for a lot of what is now going on. We

really had little to deal with in comparison, over the last two years. Now

things are really starting to happen. I am learning to expect the unexpected.

It doesn't stop the drop in my stomach but at least I am somewhat prepared and

never surprised.

Thanks for your message and don't lament what you did with your mom. You did a

wonderful job and she knew how loved she was.

That is one thing that I hear always from my mom because she is still so verbal

and she can't hide anything from us. She is always telling us that she doesn't

know what she would do without us and that she appreciates everything that we do

for her. I'm sure that your mom felt the same even though she couldn't express

it verbally.

Looking forward to seeing you. Congrats on the new home. Doris

Doris, daughter of Ramona, 78yrs old, first diagnosed with AD in Sep 2004, then

changed to LBD in March of 2005. Living independently with much support until

now. On waiting list for NH. Meds: Reminyl, Wellbutrin and Seroquel.

(Mississauga, Canada)

Re: awareness

Hi Doris,

I feel so far from you and am! My 2 weeks in BC with have found us a brand

new

townhouse complex we are putting an offer on tomorrow! Now we really need to

sell in

Ont!

I hate to hear of your mother's continuing decline, the saga of LBD. I feel so

badly for

what you are going through. I know that Mom knew right to the end what was going

on

with her status and quality of life. I am sure that to the state your mother is

now she hid

it from me with my weekly visits with show time. I realize it now, did not know

anything

of it then. I mourn the fear, concern, realization of her needs that she hid

from me until

they were no longer able to be hidden. The fact that you are able to be there

for your

mom so much more than I was enables you to live through her realization with her

and in

doing so you can be there for her in a way I couldn't, wasn't. I hope increasing

the

Seroquel helps. Will be back in a week.

>

> Hi Everyone,

>

> My mom's situation is deteriorating gradually and steadily. We are still

waiting for a NH

placement. The caregivers in her building have increased their monitoring and of

course I

am as involved as ever and even more. Her hallucinations and Capgras Syndrome

are

increasing so I will ask to have her Seroquel increased a bit. She only takes

25mg 2x per

day at this time. When she first started taking it there seemed to be a positive

effect, so

hopefully another slight increase will help. We play along with her

hallucinations, but with

the Capgras we try to stress that she is in her own apartment so that she won't

leave. She

even thinks that the food in her fridge belongs to someone else.

>

> A major concern that I have is that everytime she comes out of a situation, or

says

something that is off base, she says that she is going crazy or is stupid. Are

your loved

ones as aware and as verbal as my mom seems to be about her 'mistakes' (her

word)? I

could handle all of the behaviours that are evident more easily if I knew that

she were not

so aware and upset. She has even said that maybe she is hallucinating or

dreaming. I'm

just curious to know if she is unusual in her degree of awareness or is this

common.

>

> Doris, daughter of Ramona, 78yrs old, first diagnosed with AD in Sep 2004,

then

changed to LBD in March of 2005. Living independently with much support until

now. On

waiting list for NH. Meds: Reminyl, Wellbutrin and Seroquel. (Mississauga,

Canada)

>

December 28, 2007

,

How exciting for you. Thank goodness the internet brings us close no matter

where we are.

So glad you found where you will live! Glad to hear from you.

Hugs, And wonderful Happy New Year!

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: awareness

Hi Doris,

I feel so far from you and am! My 2 weeks in BC with have found us a

brand new

townhouse complex we are putting an offer on tomorrow! Now we really need to

sell in

Ont!

I hate to hear of your mother's continuing decline, the saga of LBD. I feel so

badly for

what you are going through. I know that Mom knew right to the end what was

going on

with her status and quality of life. I am sure that to the state your mother is

now she hid

it from me with my weekly visits with show time. I realize it now, did not know

anything

of it then. I mourn the fear, concern, realization of her needs that she hid

from me until

they were no longer able to be hidden. The fact that you are able to be there

for your

mom so much more than I was enables you to live through her realization with her

and in

doing so you can be there for her in a way I couldn't, wasn't. I hope increasing

the

Seroquel helps. Will be back in a week.

>

> Hi Everyone,

>

> My mom's situation is deteriorating gradually and steadily. We are still

waiting for a NH

placement. The caregivers in her building have increased their monitoring and

of course I

am as involved as ever and even more. Her hallucinations and Capgras Syndrome

are

increasing so I will ask to have her Seroquel increased a bit. She only takes

25mg 2x per

day at this time. When she first started taking it there seemed to be a

positive effect, so

hopefully another slight increase will help. We play along with her

hallucinations, but with

the Capgras we try to stress that she is in her own apartment so that she won't

leave. She

even thinks that the food in her fridge belongs to someone else.

>

> A major concern that I have is that everytime she comes out of a situation,

or says

something that is off base, she says that she is going crazy or is stupid. Are

your loved

ones as aware and as verbal as my mom seems to be about her 'mistakes' (her

word)? I

could handle all of the behaviours that are evident more easily if I knew that

she were not

so aware and upset. She has even said that maybe she is hallucinating or

dreaming. I'm

just curious to know if she is unusual in her degree of awareness or is this

common.

>

> Doris, daughter of Ramona, 78yrs old, first diagnosed with AD in Sep 2004,

then

changed to LBD in March of 2005. Living independently with much support until

now. On

waiting list for NH. Meds: Reminyl, Wellbutrin and Seroquel. (Mississauga,

Canada)

>

December 29, 2007

This is exactly the way Don and I are. We talk right up front about all of

Lewyville.

He told me today that the woman in his bed last night was going to kiss him,

and he told her to go away. And puff, she was gone. He also had a baby in

bed. He also had a young man standing by his bed that was flexing his large

muscles to wrestle.

He always tells them to go away or go home. End of them, at least for awhile.

It seems that he can handle it better when it is in the open with someone

that understands and helps carry his load.

We can't possibly know what in their minds and how hard they actually work

to be with us. That is why they become tired so readily.

We can't know how hard it must be on those that are having these terrible

experiences, and others tell them they are fine. They want the problem

validated.

I want to understand with him and for him. He does not need to carry this

mental thing all by himself with others denying it. That is like a Doctor

telling his patients it's all in their head when they are really sick, and they

know something is wrong. It usually makes the recipient of such treatment quite

angry, and frustrated.

Love a bunch,

Imogene

Caregiver for my true Texas Gentleman Husband of 37 years. First diagnosed

with Alzheimer's by a Neurologist OCT, 2005. But, on May 2, 2006 Dr.

Schillerstrom, Geriatric/Psychiatrist diagnosed LBD with Parkinsonism.

My precious husband, Don, is taking Zoloft and Razadyne.

A happy personality is contagious. Infect someone today.

In a message dated 12/29/2007 8:18:03 AM Central Standard Time,

adhd5464@... writes:

Millie and I go through this a lot. She has some awareness of LBD so I

always tell her that she is not crazy, it is the disease. I tell her this part

is temporary, and that she is just in a hole, but will come back out.

We blame it all on the disease and assure her that we know it is not her

talking when she can't get the words out. Sometimes just taking a nap helps

her.

Don't get me wrong, she is declining, but i would rather give her a reason,

than deny that there is not something going on.

We can get mad at the Lewy Body and not her. It also makes it easier to get

her tocontinue to take her medicines.

Millie is about ready to be upped on her Seroquel. She is seeing " the

kids " almost everyday, and they are keeping her awake with their arguing.

She also has Capgras Sydrome which I think we can link to an injury when

she fell in the shower more than a year ago. Other than that, she has had no

falls.

It is so sad when they are frustrated, but we chose to be honest about why

she felt like this. Eventually, it won't matter, but we can both be angry at

the Lewy's, wherever they may be!

Carol

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December 29, 2007

Carol,

I have a good memory, it's just short.

You told us about your Lymph problem and I recall that one was enlarged, and

you were going to the doctor. But, I don't know what is causing the problem?

Do you have Lupus? Non Hodgkin's? Lime disease? Or none of the above?

I hope your Doctor is up on what it is, and what to do.

Love a bunch,

Imogene

In a message dated 12/29/2007 8:50:22 AM Central Standard Time,

adhd5464@... writes:

Today's posts reminded me to do something about these " kids " that Millie

sees.

I didn't even ask that the Seroquel be increased when the hockey puck doctor

was here. I have enough to increase it myself, and then tell the nurse next

week that it became necessary to keep the kids at bay.

I have a massage at 11:00 to work out my lymphatic issues. I seem to hurt

more if I do not keep the system working. Every little change in the

barometer can make me misearble. So winter is a challenge for me, even though

the

high may be in the 80's today.

If i were outside of southern Florida, i would be a mess all of the time.

I can't stand the heat, but the cold would take me out in a hurry!

Smash some LewyBody snowballs against the side of the house for me.

Carol

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

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[Non-text portions of this message have been removed]

Welcome to LBDcaregivers.

December 29, 2007

, What a tribute to your understanding of your Mother. You know her,

and what she needed and didn't need.

Yes, this is quite a tribute to your insight.

Love so much,

Imogene

In a message dated 12/29/2007 9:21:30 AM Central Standard Time,

octoryrose@... writes:

I think being 'aware' is quite common w/ LBD... and why it makes it

more difficult for the caregivers in comparison to Alz. It's harder

for us caregivers to watch and harder for those afflicted to deal

with...

My mom was aware up until the very end. She knew everybody up until

the very end too. There were of course times/days she was stuck

behind that fog that it made it difficult for her to grasp things,

say the correct names, find the right words, etc. But she knew what

was going on. In regards to her hallucinations, in the moment of

seeing a hallucination she'd think it was real what she was seeing -

so she never knew that it was in fact an hallucination. Which makes

you wonder what she was thinking/feeling in her head... If she was

aware of what was going on, but at the same time thinking her

hallucinations of a cat, my father (who had passed away), and " two

beautiful red-hair boys " not to mention the horse & cow she'd see was

real... it must have made things quite confusing for her - why, would

there be a horse & cow in the 'secret garden' of the nursing home,

for example... Why when she'd see my father, would it seem strange to

us that she's asking for him later...

It made things easier for her in the beginning when I explained that

she had LBD, Lewy Body Disorder (never said 'dementia') It was sort

of a relief for her to know that what was ailing her had a name,

something to blame, and not that she was crazy. She had a very deep

fear of being found crazy (she had an aunt who was said to be 'crazy'

and lived in the attic of a house... she had a very deep fear of

turning crazy like her) She also had a fear of getting dementia - she

had 2 other aunts who had Alz. so she had this fear of getting

Alz.... So, yes, she did get 'dementia' but her not hearing the

word 'dementia' made things easier for her -- knowing it was Lewy

Body Disorder (not 'dementia') made her accept her disease easier and

working with what she had easier too.

I truly believed that although it was difficult for us to see this

ballerina in a wheelchair - it wasn't as bothersome to her as it was

to us. That her 'crying spells' wasn't her, per se, but Lewy (another

symptom of Lewy) uncontrollable 'crying spells' and not knowing why

she was crying... She was able to accept things better knowing what

she had had a name. She was also able to accept things better b/c in

her mind this was just temporary. We never called where she was

a 'nursing home' but that it was rehab. And up until the end she felt

she was in rehab. She seemed to have learned to enjoy the little

things. She enjoyed the music sessions at the NH. She enjoyed her

weekly 'compassionate' massage. She enjoyed her countless visits from

friends & family and (not to have a big head) but especially from " my

" ... I can honestly attest that I made her day upon every

visit... and how good that makes me feel now!

I'm sure she had other hallucinations/delusions that she never

verbalized = especially in the earlier stages... That was probably

why she was always looking so fearful & anxious... And the underlying

fear of being called " crazy " ... Poor Mumsie... But she's free of

Lewy now and dancing on top of the clouds...

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December 29, 2007

Hi Carol

We react pretty much the same way as you do. So that is good to know.

Unfortunately my mom is like dog with a bone and the idea that she is crazy

won't leave her head.

When she is having trouble finding words, I say 'take your time' and she is

often able to formulate some relatively coherent thought. So far that is

working, but we don't know for how long.

Thanks for your input. Take care

Doris, daughter of Ramona, 78yrs old, first diagnosed with AD in Sep 2004, then

changed to LBD in March of 2005. Living independently with much support until

now. On waiting list for NH. Meds: Reminyl, Wellbutrin and Seroquel.

(Mississauga, Canada)

Re: awareness

Millie and I go through this a lot. She has some awareness of LBD so I always

tell her that she is not crazy, it is the disease. I tell her this part is

temporary, and that she is just in a hole, but will come back out.

We blame it all on the disease and assure her that we know it is not her talking

when she can't get the words out. Sometimes just taking a nap helps her.

Don't get me wrong, she is declining, but i would rather give her a reason, than

deny that there is not something going on.

We can get mad at the Lewy Body and not her. It also makes it easier to get her

tocontinue to take her medicines.

Millie is about ready to be upped on her Seroquel. She is seeing " the kids "

almost everyday, and they are keeping her awake with their arguing.

She also has Capgras Sydrome which I think we can link to an injury when she

fell in the shower more than a year ago. Other than that, she has had no falls.

It is so sad when they are frustrated, but we chose to be honest about why she

felt like this. Eventually, it won't matter, but we can both be angry at the

Lewy's, wherever they may be!

Carol

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

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December 29, 2007

Hi ,

A lot of what you describe is similar to how we handle things with my mom. We

have never mentioned the word dementia either. Hopefully with an increase in

Seroquel she will be calmer. For the first few weeks after she started on the

Seroquel it was so nice to see less agitation and more calmness. I just don't

like the sleepiness in the daytime. But we'll deal with that too.

Thanks for your response.