Re: Long time, { LONG email} no say! {See!}

[Guest guest]

Mai-Liis,

(((((((((((((((((Hugs)))))))))))))))!!!!!!!!!!!

Donna

My next house will have no kitchen, just vending machines. Courtesy of

The-Mouth.com

[Guest guest]

Cheryl

I totally appreciate your wording here. I fall under the nh mediator

sector and with that have the guilt of not having my dad live with me.

Just had a call from the nh leaving a message on my cell phone last

night telling me that dads Celebrex (arthritis med.) is being stopped

and they are starting him on some other medication, of which I cannot

pronounce nor do I remember the name right now. Apparently Medicare

won't pay for any Arthritis medication. Not sure what this other

medication is and again, just when things are going fairly smoothly,

WHEEEEEEE, flip flop. Time for more research and leg work. Plus today

I plan on calling Debbie and hope to set with her today when she goes to

her dads nh. I am truly hoping to help her with some of the pain she is

feeling. Anyway, again, your post explained so much for all of

us.....thank you!

Sandie

Des Moines, IA

[Guest guest]

In a message dated 4/12/02 7:50:31 AM Central Daylight Time,

imelda4@... writes:

> Please add to that list: am not the perfect housekeeper(not even imperfect)

>

Oh, big time! We could really get ourselves a good list going, couldn't we?

Thanks, Imelda. Cheryl

[Guest guest]

Please add to that list: am not the perfect housekeeper(not even imperfect)

Imelda

>Debbie,

I am so sorry to see you feeling so down, but no wonder. It's hard for all

of us, whether we are at-home caregivers, NH monitors, or relief for other

caregivers. And few of us have the courage to really come out and say just

how much it gets us down sometimes. Like I:

- am depressed

- am angry

- get angry with my LO when I shouldn't

- feel cheated

- am reluctant to ask for help

- think I should be Superwoman/man

- am not etc, etc.

To learn more about Lewy Body Disase, please visit the Lewy Body Disease

Association site at: http://www.lewybodydisease.org

[Guest guest]

Donna

I am so sorry to hear the extent of the battle you are fighting with the

nursing home. I feel fortunate in that when the tough got going, I

became more tough. And for some reason they listened and acted. I wish

there were some way I could help. Please keep us posted as to what and

how you are doing. Maybe through your emails, you will find answers.

Best of luck.

Sandie

Des Moines, IA

[Guest guest]

Debbie,

I feed my Mom for the same reasons you feed your Dad. It is all so

familiar. They never have enough help. And if people are mad at

someone there and react by not eating, that's the end of their meal.

I,too, have seen all the people sitting in the hall that don't have much

if any, company. I do the same and have become friends with lots of the

patients, in the short 6 months we have been there.

My Mom isn't real cooperative about anything and I think that is mostly

because they move her to fast or move around her to fast. She get

scared and I usually know something has been going on already when I get

there. Lately it has been lots of crying. She tells staff she has to

go to the bathroom and they won't take her. Or they sit in the dining

room from 10-12, doing I don't know what. Mom can't sit in one place

that long. She get aggitated. Especially if she has to go to the

bathroom. She stays dry until I get there.

I hate to think that all NHs are the same.

You sure are a help to your Mom. Both my brothers died young. So it is

me. {And my daughter.} I have three other sons, but they don't much

like the NH.

Donna

A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com

[Guest guest]

Donna

Your mom is so lucky to have you. Even if you feel you aren't getting

any where with the nh, your fight and will power to get the best care

for your mom is admirable. Hang in there!

Sandie

Des Moines, IA

[Guest guest]

Sandie,

It just takes so much out of me everyday. The home continues to make

more problems than they solve. And Mom knows when I am agitated.

Unfortunately she still knows a lot. And she isn't a very agreeable

person either. So I never know who I will be fighting with at meal

time. And I just hold my breath until the next meal.

I did ask if life ever gets normal again. The reassurance is that

it will. Thanks for encouragement.

Donna

A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com

[Guest guest]

Donna

You are welcome for the encouragement. Just want you to know you are

doing everything right with the knowledge and resources you have.

Unfortunately none of can change this disease or the world around

us............have to admit though, the thought has crossed my mind to

change the world.......hmmmmmmmm. Anyway, I appreciate your emails and

letting me know how you are doing. I know the feeling of your mom

knowing when you are agitated. My dad picks up on that like I pick up

on the smell of chocolate.....couldn't hide it if ya wanted to. Take

special care of yourself!!!

Sandie

Des Moines, IA