A not so good day... / the crying spells...

July 30, 2006

So, I've mentioned that with mom's latest cocktail of meds that she's

had some great lucid moments. I love when she uses that time to

communicate with us and/or to express her needs. But the worst is

when she's lucid enough to realize her situation and how much it

depresses her. That was this past Friday's visit. Everything I said

or did made her cry. She wanted to ask me something and couldn't find

the words to say it. Which depressed her even more. It's so sad to

see my mom who has always been a strong individual, in her

wheelchair, big tears in her eyes, crying uncontrollably whenever she

was so close to saying what she wanted to say and losing the thought.

She would start, " What is the name of... " and that's it. I'd try to

repeat what she said to trigger the question, but it's lost. I tried

to find out - name of a person?, a place?, an object?. Nothing.

I used that time to explain (again) mom's disease. I explained that

her loss of words is a symptom, it's not her fault. She had said she

was sorry. I explained another symptom was her crying spells. I

assured her that we would take one day at a time. It took me several

times to say " see you later " (never say 'goodbye') and actually leave

b/c she would start crying again. That, I must say, is the worst part

of this disease (at least in this stage - I'm sure there are worse

days to come.) Those with AD, in the stage that has them in a nursing

home, don't understand to the extent as our LOs with LBD, exactly

what they have lost.

That's my next task at hand, figuring out a way to help my mom

communicate her needs. Something that isn't too difficult (anything

that is technical is not going to work - I wish she knew computers,

etc.) that will allow her to actually accomplish it. And something

that won't get lost/stolen in the Nursing Home. There's got to be

something... Maybe I can request the help of the speech therapist at

the nursing home...

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid decline from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

as weepy); as of 4/21 on Exelon (a/o 6/28 began following the

suggested dosage for LBD); as of 7/1 went on ALA (200 mg) and B1.

Visit the LBDCaregivers board on the web:

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

(See files, suggested links, databases, photos of members, and search

previous posts)

July 30, 2006

,

For special needs children who are nonverbal we use picture symbols to help them

communicate. There are computer programs to make them with, so that they can be

geared to the individual, with or without words attached. I am not sure what

software is

currently out there, have not needed to make the cards for years. Packages can

possibly

also be bought premade. If someone with LBD can't communicate, I am not sure

they

could even find the appropriate cue card to use.

If you have a support group in your area for autistic children they might be

able to give

you a lead if this idea interests you.

I am so sorry to hear of your mother's tears. Yes, the crying is extremely

difficult to

witness. I've been there on many visits.

>

> So, I've mentioned that with mom's latest cocktail of meds that she's

> had some great lucid moments. I love when she uses that time to

> communicate with us and/or to express her needs. But the worst is

> when she's lucid enough to realize her situation and how much it

> depresses her. That was this past Friday's visit. Everything I said

> or did made her cry. She wanted to ask me something and couldn't find

> the words to say it. Which depressed her even more. It's so sad to

> see my mom who has always been a strong individual, in her

> wheelchair, big tears in her eyes, crying uncontrollably whenever she

> was so close to saying what she wanted to say and losing the thought.

> She would start, " What is the name of... " and that's it. I'd try to

> repeat what she said to trigger the question, but it's lost. I tried

> to find out - name of a person?, a place?, an object?. Nothing.

>

> I used that time to explain (again) mom's disease. I explained that

> her loss of words is a symptom, it's not her fault. She had said she

> was sorry. I explained another symptom was her crying spells. I

> assured her that we would take one day at a time. It took me several

> times to say " see you later " (never say 'goodbye') and actually leave

> b/c she would start crying again. That, I must say, is the worst part

> of this disease (at least in this stage - I'm sure there are worse

> days to come.) Those with AD, in the stage that has them in a nursing

> home, don't understand to the extent as our LOs with LBD, exactly

> what they have lost.

>

> That's my next task at hand, figuring out a way to help my mom

> communicate her needs. Something that isn't too difficult (anything

> that is technical is not going to work - I wish she knew computers,

> etc.) that will allow her to actually accomplish it. And something

> that won't get lost/stolen in the Nursing Home. There's got to be

> something... Maybe I can request the help of the speech therapist at

> the nursing home...

>

> ; loving daughter of Maureen of Boston, MA; finally diagnosed

> with LBD on 2/06 after also being diagnosed with everything from AD

> to Vascular Dementia caused by mini strokes to Binswengers...; was

> victim to rapid decline from Risperidone (or combination of

> Risperidone with other drugs OR possibly received another " bad drug "

> when she was observed/tested in a hospital in 10/05); in a NH since

> 11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

> as weepy); as of 4/21 on Exelon (a/o 6/28 began following the

> suggested dosage for LBD); as of 7/1 went on ALA (200 mg) and B1.

>

> Visit the LBDCaregivers board on the web:

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

> (See files, suggested links, databases, photos of members, and search

> previous posts)

>

July 30, 2006

,

And I'm complaining about her bitching about money--how

insensitive. My heart goes out to you.

Dodie

>

> So, I've mentioned that with mom's latest cocktail of meds that

she's

> had some great lucid moments. I love when she uses that time to

> communicate with us and/or to express her needs. But the worst is

> when she's lucid enough to realize her situation and how much it

> depresses her. That was this past Friday's visit. Everything I

said

> or did made her cry. She wanted to ask me something and couldn't

find

> the words to say it. Which depressed her even more. It's so sad to

> see my mom who has always been a strong individual, in her

> wheelchair, big tears in her eyes, crying uncontrollably whenever

she

> was so close to saying what she wanted to say and losing the

thought.

> She would start, " What is the name of... " and that's it. I'd try

to

> repeat what she said to trigger the question, but it's lost. I

tried

> to find out - name of a person?, a place?, an object?. Nothing.

>

> I used that time to explain (again) mom's disease. I explained

that

> her loss of words is a symptom, it's not her fault. She had said

she

> was sorry. I explained another symptom was her crying spells. I

> assured her that we would take one day at a time. It took me

several

> times to say " see you later " (never say 'goodbye') and actually

leave

> b/c she would start crying again. That, I must say, is the worst

part

> of this disease (at least in this stage - I'm sure there are worse

> days to come.) Those with AD, in the stage that has them in a

nursing

> home, don't understand to the extent as our LOs with LBD, exactly

> what they have lost.

>

> That's my next task at hand, figuring out a way to help my mom

> communicate her needs. Something that isn't too difficult

(anything

> that is technical is not going to work - I wish she knew

computers,

> etc.) that will allow her to actually accomplish it. And something

> that won't get lost/stolen in the Nursing Home. There's got to be

> something... Maybe I can request the help of the speech therapist

at

> the nursing home...

>

> ; loving daughter of Maureen of Boston, MA; finally

diagnosed

> with LBD on 2/06 after also being diagnosed with everything from

AD

> to Vascular Dementia caused by mini strokes to Binswengers...; was

> victim to rapid decline from Risperidone (or combination of

> Risperidone with other drugs OR possibly received another " bad

drug "

> when she was observed/tested in a hospital in 10/05); in a NH

since

> 11/05. Update: on antidepressant Celexa, 20mg (still teary, but

not

> as weepy); as of 4/21 on Exelon (a/o 6/28 began following the

> suggested dosage for LBD); as of 7/1 went on ALA (200 mg) and B1.

>

> Visit the LBDCaregivers board on the web:

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

> (See files, suggested links, databases, photos of members, and

search

> previous posts)

>

July 30, 2006

victoria,

do you have a nice 8x10 picture of you , and put it on your moms dresser, and

when you lieave, tell your mom, i am leaving this picture here so you konw i am

not far away, maybe even a picture with recording capabilities so the nurses

aide can press the butone for her and she can hear your voice say i love you

mama, i will see you soon. just something short and sweet. we gave dad a duck

that is a puppet and when you move the beak it quacks old macdonald , london

bridge, or frere jacques, dad loved it, and when he couldnt get his hand in, he

just used his fingers to open and lcose the beak and that worked. he giggled

like a baby every time.

as for communication, when daddy couldnt communicate and if i couldnt figure it

out, i would try to distract daddy and talk about something else. and if i

couldnt, i would try to comfort dad, sometimes when he calmed down something

would come out and sometimes i could figure it out, if i couldnt, i would say i

am sorry dad i am just not smart enough to figure it out, i would try to take

the blame so he wouldnt feel bad, didnt always work but sometiems it did.

sometimes i would just change teh subject, usually trying to tell him sometihng

good and exciting like how goodi bowled the nite before or how we had a good day

at the flea market, some happy news, that woudl make him smile, even i he didnt

understand it he picked up on my enthusiasm, ihope some of this helps, hugs,

sharon m

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall

7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

---- stimtimminss wrote: