New in Pa

[Guest guest]

Hi. I just joined. My Mom has had symptoms for 6 years, very insidious at first

but got diagnosed with Parkinson's & Alzheimers in early 2004. Then in late

summer that year, we went to a specialist who diagnosed LBD. He called it

Parkinson's w/ Lewy Bodies, then I discovered that LBD is a disease of it's own.

The doctors still say she has Parkinson's and Alzheimers, too.

I stopped work last Augst and care for her full-time at home. I also cared for

my father who had heart disease, diabetes, and an aneurysm, which he died from

just before Christmas 2005.

My Mom is my constant companion, which I'm glad of, but she collects things

and I have lost keys, bills, and find things in odd places everywhere, or torn

and wrapped up in blankets, robes, trash, etc. She also will eat almost

anything, including imaginary food, but doesn't eat real food so well anymore. I

feed her more than 1/2 the time. She is incontinent of bowel & bladder so she

wears diapers, and doesn't move much in bed and gets pressure areas especially

on her ears, so I turn her whenever I wake up.

Occasionally she will get mad at people if we are out, for example at a

restaurant, responding to whatever memory or notion is in her head. When she

speaks she does not answer approriately, and her sentences don't make sense. She

also has lots of visual hallucinations and talks to them more often and better

than to real people. Although she remembers my name much of the time, she

doesn't recognize most of the family, although she can remember their names at

times, but she has no idea who any of us are in relationship to her.

Because of the Parkinson's she also has poor gait and has fallen. Her balance

is not good and she has the stiff shuffling gait that increased sinemet doesn't

seem to help a lot. She is right with me all the time so she doesn't eat

something dangerous or fall.

I guess I said all this to let you know what our situation is, and for those

who are thinking about keeping their family member home, I am glad I can, and I

appreciate so much having this time with her, but it can be frustrating and the

endlessness of it is tiring. She's like a small child who is never able to

learn, but only loses more and more of her abilities.

I am so glad I talked to my parents years ago, and they wanted to stay home &

not go to a ALF or NH, and I am so glad I chose to care for them and am able to.

But it is isolating.

Thank you for listening and I look forward to your support. Kate

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

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[Guest guest]

Hi Kate,

Welcome to the group. You are well into this journey that is best travelled

with support.

You mention increased Sinemet which takes me back to my mother's days of

walking,

increasing her Sinemet as her rigidity, shuffling, falling increased. What I

did not realize at

the time is that as the dementia progressed, the Sinemet turned on her and made

her

cognitively worse. Once she was wheelchair bound and we did not have to fear

the falling

anymore, we weaned her from the Sinemet and she became less confused with fewer

hallucinations, more capable of eating unassisted, better swallowing. Of course

as the

dementia progressed, she continued to decline in all areas.

I'm sorry for what you are going through. Your mother is lucky you can stay

home to care

for her.

, Oakville Ont.

Mom 92, 12 1/2 years " Parkinsons "

3 1/2 years ago LBD diagnosis, evident much longer in hindsight.

Encouraged to give up her licence 6 years ago.

Eltroxin, Tylenol 1g 3 times a day

Off Aricept since Feb./06

On " gentle care " June 30/06, spoon-fed pureed foods, thickened fluids

>

> Hi. I just joined. My Mom has had symptoms for 6 years, very insidious at

first but got

diagnosed with Parkinson's & Alzheimers in early 2004. Then in late summer that

year, we

went to a specialist who diagnosed LBD. He called it Parkinson's w/ Lewy Bodies,

then I

discovered that LBD is a disease of it's own. The doctors still say she has

Parkinson's and

Alzheimers, too.

> I stopped work last Augst and care for her full-time at home. I also cared

for my father

who had heart disease, diabetes, and an aneurysm, which he died from just before

Christmas 2005.

> My Mom is my constant companion, which I'm glad of, but she collects things

and I

have lost keys, bills, and find things in odd places everywhere, or torn and

wrapped up in

blankets, robes, trash, etc. She also will eat almost anything, including

imaginary food, but

doesn't eat real food so well anymore. I feed her more than 1/2 the time. She is

incontinent of bowel & bladder so she wears diapers, and doesn't move much in

bed and

gets pressure areas especially on her ears, so I turn her whenever I wake up.

> Occasionally she will get mad at people if we are out, for example at a

restaurant,

responding to whatever memory or notion is in her head. When she speaks she does

not

answer approriately, and her sentences don't make sense. She also has lots of

visual

hallucinations and talks to them more often and better than to real people.

Although she

remembers my name much of the time, she doesn't recognize most of the family,

although

she can remember their names at times, but she has no idea who any of us are in

relationship to her.

> Because of the Parkinson's she also has poor gait and has fallen. Her

balance is not

good and she has the stiff shuffling gait that increased sinemet doesn't seem to

help a lot.

She is right with me all the time so she doesn't eat something dangerous or

fall.

> I guess I said all this to let you know what our situation is, and for those

who are

thinking about keeping their family member home, I am glad I can, and I

appreciate so

much having this time with her, but it can be frustrating and the endlessness of

it is tiring.

She's like a small child who is never able to learn, but only loses more and

more of her

abilities.

> I am so glad I talked to my parents years ago, and they wanted to stay home

& not go

to a ALF or NH, and I am so glad I chose to care for them and am able to. But it

is

isolating.

> Thank you for listening and I look forward to your support. Kate

>

>

>

> ---------------------------------

> Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for

2¢/min or less.

>

>

[Guest guest]

Quoting Capano :

Hello ! Welcome to a list - no-one really wants to be on !

I too quit my job to help care for my Dad (and my kids who were 2 and

4 at the t time). You are right - it's like having another child but

they actually regress.

It's great you can keep mom home - My Dad's downfall was the hospital

- he went in for pneumonia and everything spiraled out of control and

he ended up dying of sepsis 4 months later.

Hosp and NH can't deal with these patients - their answer is to drug

them up and they re WAYYY more suseptable to these drugs and it makes

everything worse.

I'm nearby in NJ - you are lucky you found a Dr who recognised LBD ...

my Dad's dr insisted it was Parkinsons - even when I brought up LBD -

he shrugged and said " what's in a name " ! But it makes a HUGE

difference in treatment.

HUGS to you !

Remember to ask any questions you want - folks here know more than

most Dr's cause we've lived through it.

Donna

www.QuestforCure.net

[Guest guest]

Hi Kate,

I am new to the list also. IN my case it is my father who I found

in a hurricane shelter 2 years ago in Florida and took him home to

Oregon in between hurricanes. He was only recently diagnosed with

LBD because he is a bit atypical, i.e., no hallucinations at least

as far I know.

You are lucky I think to be caring for your mother at home. I have

not felt I could do that as I need to work and his primary symptom

has been agitation, including some aggression in recent months.

Care elsewhere always seems marginal though and staff don't like a

family member letting them know their fathers fingernails are long,

jagged and dirty, for example. I think my father is a little

further " gone " than your mother but all brain parts do not seem to

go at an equal rate. Then theres the daily fluctuations. I keep

thinking he is getting ready to " transition " then he bounces back.

Blessings,

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