Re: Update on Mom and an Apology to the Group

[Guest guest]

--- Dear Jan,

I am sorry if thats not your name.Im just getting back into the

mix these past few weeks here but Please dont feel the need to

apologize for anything you say here.We are all here for one

another.I am so sorry you and yours are going through this as I am

for everyone on this board wether their loved ones have passed or

still suffer.This disease sucks.Its cruel and ruthless on not only

our loved ones but everyone involved.We are here if you need

us.Consider us all in it together.My very best to you and your

family and your dear parents. Ron

In LBDcaregivers , " janthegoddess2003 "

wrote:

>

> When I look back at where my Mom was in January and where she was

> yesterday when I was there, I can see such a dramatic decline.

When

> we brought her home from the hospital in January (after finally

> receiving a diagnosis of LBD) she was alert, sitting in her

recliner,

> working her word search puzzles, talking, laughing...it was hard

to

> accept the LBD diagnosis because she just didn't seem to fit so

many

> of the things in the stages. I hadn't been to their house in

almost

> a week. It was the end of the school year, and I was running

> frantically trying to do everything required for end of school

> closeout. I called Dad several times a day to check on Mom and on

> him, but couldn't get over there.

>

> Her Parkinsonism is becoming more pronounced. She finds it

difficult

> to hold on to food, drinks, or anything. When she's awake enough

to

> eat, she only wants hard-boiled eggs, hamburger and onion rings,

or

> something sweet. Hospice provides cases of Ensure, and that's the

> largest part of her diet now. If she wants a hamburger, she will

eat

> 1/4 of it, and the rest will go on the floor if we don't remove it

> quickly enough. She pours water, food, anything she doesn't want,

> onto the floor over the rails of her hospital bed.

>

> My daughter, granddaughter, son and I did their grocery shopping

> yesterday and took the groceries over. When we got there, Mom was

> happy to see us, hugged and kissed all of us, remembered our

names,

> hugged Gracie (my granddaughter), and then within 2 minutes had

gone

> back to Lewyville. She would occasionally rouse long enough to

yell

> out something totally incomprehensible, and then go back to the

> stare. During those times, she will not respond to anyone or

> anything except to move away from any touch. She won't talk, but

> will push you away or turn away.

>

> Her lucid moments are so infrequent now. She does rouse and ask

for

> something to eat, but by the time you can get it to her she's out

> again. Ensure has been a blessing because you can get it to her

> quickly and she will normally stay awake long enough to get a

> glassful down. Then she's out. If she's lucid when she has to

pee,

> she will use the commode, but if the urge strikes during one of

her

> Lewy Zone moments, she's incontinent. We've tried pads in

underwear,

> and adult diapers, but she pulls everything off.

>

> Our hospice nurse has been very diligent in checking for UTI's,

and

> she's had no medication changes since January. She comes three

times

> a week to check on Mom's health. She did have some problems

> breathing, being unable to clear congestion, but hospice provided

a

> nebulizer and medication and that cleared up pretty quickly.

> Physically, Mom is doing well. Home health comes three times a

week

> and bathes her and washes her hair.

>

> We had a physical therapist coming in three times a week also,

trying

> to get Mom able to bear her weight on her legs, but then Hospice

and

> the doctor decided that she was better off being less mobile

because

> Dad was catching her trying to leave the house on her walker.

With

> increased ability to walk, she was falling more and more, and Dad

> can't get her up on his own without physically injuring himself!

>

> Dad complains constantly about being alone (although

our " visitor's

> log " shows four to five visits EACH DAY to their home from

neighbors,

> church friends, home health, hospice, family, clergy) and

everytime I

> go over I have to counsel with him and deal with his crying. Yes,

> he's on antidepressants, but he's been overdosing himself on

> hydrocodone which was prescribed for arthritis and that almost

> totally negates the effects of the antidepressants. Dad wants to

> feel nothing.

>

> There are so many other things that have happened recently, but

this

> is not my own sounding board for my problems...*LOL* I just try

to

> laugh as often as possible, find humor in situations, and

sometimes

> I'm afraid that my efforts may offend others here. We all find

our

> own ways to deal with that which would kill us otherwise. Some

take

> medications, some seek therapy, some pray...I know that I stuff

mine

> inside, deep enough to not affect my daily living, and try to

> maintain a sense of humor about it. If I seem irreverent or off-

the-

> wall sometimes, please understand that I'm just dealing with

> horrible, horrible situations here as best I can.

>

[Guest guest]

Jan,

One of the ways I heard to keep Depends on men and it might work for women too,

was to put regular underpants on over depends. It is harder for them to get

them off.

You can use this for your sounding board as much and as often as you like, That

is what we are here for. And for those of us who aren't still " in the process "

it reminds us to thank our stars that it is over. But I certainly do remember

going through it. And it is why I stay on to support you.

Sounds like your Dad is having a few memory problems of his own. Glad so many

are visiting them.

You can deal with the situation any way you like. We love to have a laugh too.

Everyone needs to deal with this disease in the best way they know how.

Hugs,

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.

Update on Mom and an Apology to the Group

When I look back at where my Mom was in January and where she was

yesterday when I was there, I can see such a dramatic decline. When

we brought her home from the hospital in January (after finally

receiving a diagnosis of LBD) she was alert, sitting in her recliner,

working her word search puzzles, talking, laughing...it was hard to

accept the LBD diagnosis because she just didn't seem to fit so many

of the things in the stages. I hadn't been to their house in almost

a week. It was the end of the school year, and I was running

frantically trying to do everything required for end of school

closeout. I called Dad several times a day to check on Mom and on

him, but couldn't get over there.

Her Parkinsonism is becoming more pronounced. She finds it difficult

to hold on to food, drinks, or anything. When she's awake enough to

eat, she only wants hard-boiled eggs, hamburger and onion rings, or

something sweet. Hospice provides cases of Ensure, and that's the

largest part of her diet now. If she wants a hamburger, she will eat

1/4 of it, and the rest will go on the floor if we don't remove it

quickly enough. She pours water, food, anything she doesn't want,

onto the floor over the rails of her hospital bed.

My daughter, granddaughter, son and I did their grocery shopping

yesterday and took the groceries over. When we got there, Mom was

happy to see us, hugged and kissed all of us, remembered our names,

hugged Gracie (my granddaughter), and then within 2 minutes had gone

back to Lewyville. She would occasionally rouse long enough to yell

out something totally incomprehensible, and then go back to the

stare. During those times, she will not respond to anyone or

anything except to move away from any touch. She won't talk, but

will push you away or turn away.

Her lucid moments are so infrequent now. She does rouse and ask for

something to eat, but by the time you can get it to her she's out

again. Ensure has been a blessing because you can get it to her

quickly and she will normally stay awake long enough to get a

glassful down. Then she's out. If she's lucid when she has to pee,

she will use the commode, but if the urge strikes during one of her

Lewy Zone moments, she's incontinent. We've tried pads in underwear,

and adult diapers, but she pulls everything off.

Our hospice nurse has been very diligent in checking for UTI's, and

she's had no medication changes since January. She comes three times

a week to check on Mom's health. She did have some problems

breathing, being unable to clear congestion, but hospice provided a

nebulizer and medication and that cleared up pretty quickly.

Physically, Mom is doing well. Home health comes three times a week

and bathes her and washes her hair.

We had a physical therapist coming in three times a week also, trying

to get Mom able to bear her weight on her legs, but then Hospice and

the doctor decided that she was better off being less mobile because

Dad was catching her trying to leave the house on her walker. With

increased ability to walk, she was falling more and more, and Dad

can't get her up on his own without physically injuring himself!

Dad complains constantly about being alone (although our " visitor's

log " shows four to five visits EACH DAY to their home from neighbors,

church friends, home health, hospice, family, clergy) and everytime I

go over I have to counsel with him and deal with his crying. Yes,

he's on antidepressants, but he's been overdosing himself on

hydrocodone which was prescribed for arthritis and that almost

totally negates the effects of the antidepressants. Dad wants to

feel nothing.

There are so many other things that have happened recently, but this

is not my own sounding board for my problems...*LOL* I just try to

laugh as often as possible, find humor in situations, and sometimes

I'm afraid that my efforts may offend others here. We all find our

own ways to deal with that which would kill us otherwise. Some take

medications, some seek therapy, some pray...I know that I stuff mine

inside, deep enough to not affect my daily living, and try to

maintain a sense of humor about it. If I seem irreverent or off-the-

wall sometimes, please understand that I'm just dealing with

horrible, horrible situations here as best I can.