Re: Re: What are they thinking?

[Guest guest]

Barb

Thank you for your support for todays meeting, and your caring thoughts

with your reply of holding onto the memories of dad smiling at me.

It just confirms that even though my dad is unable to say my name...he

still knows me. I had feared this in the beginning of diagnosis. But

as the article/poem from the Alzheimer's Assoc. stated...he will always

know me, he knows me by my voice, my touch, my smell. Good news here as

it is true. A definate comfortable feeling.

Again, thank you for your replies!! :-)

Sandie

Des Moines, IA

[Guest guest]

Barb

Thank you for the words of encouragement. Today was a struggle of the

heart with my dad. I see his fight is gone and he just wants to be

totally left alone. After over an hour I finally was able to get his

meds. in him. He still refused food, so after asking a few times if he

wanted to eat or not I told him I would respect his wishes and have the

hospital staff take away the food. As of 2:30 p.m. he had had only 3

sips of water. He has lost his ability to feed himself and lost most of

his ability to swallow. He still has the biggest, bluest eyes though.

It is through his eyes that I feel we communicate. Plus once in a while

he is able to muster up shaking his head up and down or side to side

meaning yes or no. As of Monday, he will be moved to another

nh...around 30 minutes away. I have heard only the best comments about

this nh, so the drive seems minimal if the care will be good for my dad.

Just an update on how my dad is doing.

Sure hope you start seeing some improvements in your husband with the

med. change. Keep us posted. Take Care!!

Sandie

Des Moines, IA

[Guest guest]

<PRE>{{{{{{{Sandie}}}}}}} You are such an encouragement. May God give you all

the peace and courage you need for these days. Kathie/Kate

[Guest guest]

Sandi,

I am so sorry to hear about what you are going through. Is your brother

helping you in any way?

What N Home did you find? I wish you had your dad moved to Norwalk. We could

look out for each other and support each other. The Home in Norwalk does not

have a dementia floor, but there are people here with Alz.

You have such a rough road ahead and I am thinking of you. Please keep us

posted and I, AM, IF YOU NEED ME.

Debbie Curtis,

Norwalk, IA.

[Guest guest]

Kate

Thank you for you the encouragement, and support. My hope is that my

dad will find strength in me to finish facing this fearful, confusing

hell he has had to live.

I so very much appreciate all the support found in this much needed

group. :-)) Smiles and hugs to all!!

Sandie

Des Moines, IA

[Guest guest]

Debbie

Thank you for your caring thoughts. Uh, I talked to my brother about 8

days ago. I did also leave a message that it sounded like dad was going

to move to Pleasant Care (in Pleasantville). I have not heard back from

him. I saw his truck at a local IHOP this morning so I know he wasn't

out travelling with his boys with hockey. Not sure why he hasn't

called. This time I admitted dad to the hospital without my brothers

help. I never did have the meeting with the former nh, just ended up

their Friday telling them I wanted to pay dad up to date and that my dad

would not be coming back. I will go there this weekend and get my dads

things. I did tell the business administrator that I wanted my dads

eyeglasses. I also told her about the 2 broken electric razors I have

but I would not ask for reimbursement. I figure for the dignity of my

dad I would let them know there had been a problem, but then let it go.

As for now, yesterday, dad had 4 sips of water.

Today so far he has had nothing. I asked a nurse how long one could

survive on so very little and she told me her mom lived 17 days with

nothing. Hmmmm, my poor dad. Today I will go visit him and take along

my humor and love to share. I am looking forward to his smile and his

big blue eyes for conversation. Have to admit, he's been a trooper!!

Sending hugs to you and thanking for your continued support. :-)

Sandie

Des Moines, IA

[Guest guest]

In a message dated 9/13/02 10:46:41 PM Central Daylight Time,

autumn01@... writes:

> word substitutions. I try to appreiciate the creativity of the mind and not

> dwell on what it really means. And here I thought that was just a process

> of menopause.

Thanks for the chuckle, . Yes, I appreciate the creativity of my

husband's speech when word finding is a problem. I am stopping 12 yrs of HRT

and really wonder what lies ahead!! Cheryl

[Guest guest]

In a message dated 9/13/02 10:46:41 PM Central Daylight Time,

autumn01@... writes:

> word substitutions. I try to appreiciate the creativity of the mind and not

> dwell on what it really means. And here I thought that was just a process

> of menopause.

Thanks for the chuckle, . Yes, I appreciate the creativity of my

husband's speech when word finding is a problem. I am stopping 12 yrs of HRT

and really wonder what lies ahead!! Cheryl

[Guest guest]

Sandie, my thoughts are with you during what looks like a very difficult time

ahead.

Cheryl

[Guest guest]

Sandie, my thoughts are with you during what looks like a very difficult time

ahead.

Cheryl

[Guest guest]

I am going to print out your suggestion for popsicles. Thank you for

responding. It is 9:20 p.m. here and I called the hospital needing to

know how my dad is doing. As of yet he had my 4 sips of water yesterday

which was the last of any intake. sigh

Sandie

Des Moines, IA

[Guest guest]

I am going to print out your suggestion for popsicles. Thank you for

responding. It is 9:20 p.m. here and I called the hospital needing to

know how my dad is doing. As of yet he had my 4 sips of water yesterday

which was the last of any intake. sigh

Sandie

Des Moines, IA

[Guest guest]

Cheryl

Please explain what HRT is. Thanks! :-))

Sandie

[Guest guest]

They inserted an NG tube this morning because Dad can no longer swallow, but

his mouth gets so dry. He is comatose from the drugs and his mouth is always

open. We swab his mouth. I hope that the hospital will let us give him

popsicles to sooth his dry mouth.

They can only keep the NG tube in there for a limited time, then comes the

surgical feeding tube. Dad did not want this. Here we are. It is hard to

believe that we are here already! We've agreed to refuse this option and

provide palliative care instead.

From: sanclown@...

Reply-To: LBDcaregivers

Date: Sat, 14 Sep 2002 21:19:44 -0500 (CDT)

To: LBDcaregivers

Subject: Re: Re: What are they thinking?

I am going to print out your suggestion for popsicles. Thank you for

responding. It is 9:20 p.m. here and I called the hospital needing to

know how my dad is doing. As of yet he had my 4 sips of water yesterday

which was the last of any intake. sigh

Sandie

Des Moines, IA

[Guest guest]

They inserted an NG tube this morning because Dad can no longer swallow, but

his mouth gets so dry. He is comatose from the drugs and his mouth is always

open. We swab his mouth. I hope that the hospital will let us give him

popsicles to sooth his dry mouth.

They can only keep the NG tube in there for a limited time, then comes the

surgical feeding tube. Dad did not want this. Here we are. It is hard to

believe that we are here already! We've agreed to refuse this option and

provide palliative care instead.

From: sanclown@...

Reply-To: LBDcaregivers

Date: Sat, 14 Sep 2002 21:19:44 -0500 (CDT)

To: LBDcaregivers

Subject: Re: Re: What are they thinking?

I am going to print out your suggestion for popsicles. Thank you for

responding. It is 9:20 p.m. here and I called the hospital needing to

know how my dad is doing. As of yet he had my 4 sips of water yesterday

which was the last of any intake. sigh

Sandie

Des Moines, IA

[Guest guest]

Our stories sound so very familiar. I was approached last evening about

I.V's...we are not even having them. My dad is still alert and it is

clear he knows what he is doing. You are so very right when you said

you can't believe we are here. My heart goes out to you and my prayers

are with you.

Sending a hug along with this letter...

Sandie

Des Moines, IA

[Guest guest]

Sandie and ,

We are all three at about the same place with our parents. Mom is also

not drinking or eating much at all. And the nh we are at has been an on

going problem. Just yesterday my daughter went in after dinner and Mom

had been gotten up from her nap and taken to dinner and left in the

dining room with no restraint. She could have seriously hurt herself as

she often bends down to get to her feet for " things. "

Partly why she hasn't been eating is she has thrush in her mouth and it

took me 3 weeks to get it looked at and medicated. It meanwhile got

worse and worse. So today I have to deal with all that.

Sandie you asked about Hospice. One of the new things I found out to my

surprise, is that medicare pays for everything with Hospice except room

and board. I always wondered why people kept their LO in the nh and

didn't move them to Hospice facility. Mom is on Medicaid and has to

have Hospice where she is at, due to finances. But the good part is

that I have a support system. The chaplain come in to see Mom and me

and the SW is in contact with me. The aide is suppose to see Mom twice

a week and I haven't been very happy about the aide as she hasn't been

coming in twice a week and the first couple weeks she didn't do much.

It was a nurse from Hospice that came and helped me get her started on

meds for her mouth when it was so bad one SUNDAY!

So I don't have to fight with them like I do the nh staff. It more

feels like they are on my side.

Hope things go well Sandie at the new nh. A move at this time has to be

hard on you and your Dad.

Good luck

Donna

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

Association site at:

http://www.lewybodydisease.org

[Guest guest]

Donna

Thank you for your thoughtful concerns. We moved dad yesterday, via

ambulance, and I was able to ride with him. Thought I was going to

vomit myself from motion sickness....that made dad laugh which was

almost worth it.

He is in his new nh and we (my brother and I) met with Hospice. We met

the nurse and social worker...wonderful angels on earth. We tried to

come up with a plan for dad and his decisions he has made. He did drink

some of a protein drink yesterday, less than a cup, that was the first

of any intake fo 5 days. As for now, we are mostly just waiting and

letting dad have a choice in what he wants. My brother said he thinks

dad is pretty strong for making the decision to refuse all nutrition

knowing what the outcome will be. It has bee WONDERFUL having the

support from my brother. He has been so very gracious with his comments

of how I have been the caregiver and have done everything for the past 5

yrs. I let him know I don't judge him or feel he is a lesser person for

his decisions. Anyway, enough rambling and time to read, read, and read

the many posts I missed yesterday. Thanks to all for listening!!

Best wishes to you Donna, and prayers to you and your mom!

Sandie

Des Moines, IA

[Guest guest]

Donna

Thank you for your thoughtful concerns. We moved dad yesterday, via

ambulance, and I was able to ride with him. Thought I was going to

vomit myself from motion sickness....that made dad laugh which was

almost worth it.

He is in his new nh and we (my brother and I) met with Hospice. We met

the nurse and social worker...wonderful angels on earth. We tried to

come up with a plan for dad and his decisions he has made. He did drink

some of a protein drink yesterday, less than a cup, that was the first

of any intake fo 5 days. As for now, we are mostly just waiting and

letting dad have a choice in what he wants. My brother said he thinks

dad is pretty strong for making the decision to refuse all nutrition

knowing what the outcome will be. It has bee WONDERFUL having the

support from my brother. He has been so very gracious with his comments

of how I have been the caregiver and have done everything for the past 5

yrs. I let him know I don't judge him or feel he is a lesser person for

his decisions. Anyway, enough rambling and time to read, read, and read

the many posts I missed yesterday. Thanks to all for listening!!

Best wishes to you Donna, and prayers to you and your mom!

Sandie

Des Moines, IA

[Guest guest]

Donna

Thank you for your thoughtful concerns. We moved dad yesterday, via

ambulance, and I was able to ride with him. Thought I was going to

vomit myself from motion sickness....that made dad laugh which was

almost worth it.

He is in his new nh and we (my brother and I) met with Hospice. We met

the nurse and social worker...wonderful angels on earth. We tried to

come up with a plan for dad and his decisions he has made. He did drink

some of a protein drink yesterday, less than a cup, that was the first

of any intake fo 5 days. As for now, we are mostly just waiting and

letting dad have a choice in what he wants. My brother said he thinks

dad is pretty strong for making the decision to refuse all nutrition

knowing what the outcome will be. It has bee WONDERFUL having the

support from my brother. He has been so very gracious with his comments

of how I have been the caregiver and have done everything for the past 5

yrs. I let him know I don't judge him or feel he is a lesser person for

his decisions. Anyway, enough rambling and time to read, read, and read

the many posts I missed yesterday. Thanks to all for listening!!

Best wishes to you Donna, and prayers to you and your mom!

Sandie

Des Moines, IA

[Guest guest]

Sandie!

My heart goes out to you and your family. I don't know how you do it sometimes.

You are so strong and patient with everyone. God must be on the throne is the

only answer I can come up with. May God bless you and I will continue to pray

for you and your family.

Love,

Jackie

Re: Re: What are they thinking?

Donna

Thank you for your thoughtful concerns. We moved dad yesterday, via

ambulance, and I was able to ride with him. Thought I was going to

vomit myself from motion sickness....that made dad laugh which was

almost worth it.

He is in his new nh and we (my brother and I) met with Hospice. We met

the nurse and social worker...wonderful angels on earth. We tried to

come up with a plan for dad and his decisions he has made. He did drink

some of a protein drink yesterday, less than a cup, that was the first

of any intake fo 5 days. As for now, we are mostly just waiting and

letting dad have a choice in what he wants. My brother said he thinks

dad is pretty strong for making the decision to refuse all nutrition

knowing what the outcome will be. It has bee WONDERFUL having the

support from my brother. He has been so very gracious with his comments

of how I have been the caregiver and have done everything for the past 5

yrs. I let him know I don't judge him or feel he is a lesser person for

his decisions. Anyway, enough rambling and time to read, read, and read

the many posts I missed yesterday. Thanks to all for listening!!

Best wishes to you Donna, and prayers to you and your mom!

Sandie

Des Moines, IA

[Guest guest]

Jackie

Thank you for such heart warming words. As I have told others, the only

reason I have for strength and courage is prayer. I have found such

peace at times, even in daily living outside LBD, in just praying. Have

you heard the song by Kathy Tricolli (not sure without going to the

truck and getting the cassette, on spelling) titled " Go Light Your

World " ? Has a beautiful meaning in stating that we can be examples to

others. I truly believe there is a higher power in charge of life and

everything happens for a reason. My hopes are I will be able to help

another family member from the knowledge and experience I have from my

own dads life.

Your thoughtfulness and support is appreciated!

Sandie

Des Moines, IA

[Guest guest]

Jackie

Thank you for such heart warming words. As I have told others, the only

reason I have for strength and courage is prayer. I have found such

peace at times, even in daily living outside LBD, in just praying. Have

you heard the song by Kathy Tricolli (not sure without going to the

truck and getting the cassette, on spelling) titled " Go Light Your

World " ? Has a beautiful meaning in stating that we can be examples to

others. I truly believe there is a higher power in charge of life and

everything happens for a reason. My hopes are I will be able to help

another family member from the knowledge and experience I have from my

own dads life.

Your thoughtfulness and support is appreciated!

Sandie

Des Moines, IA

[Guest guest]

Sandie! Your words are a great help to me and I am sure to others also. Have a

great day! My mother had a pretty good day yesterday.

Jackie

Tifton, GA

Re: Re: What are they thinking?

Jackie

Thank you for such heart warming words. As I have told others, the only

reason I have for strength and courage is prayer. I have found such

peace at times, even in daily living outside LBD, in just praying. Have

you heard the song by Kathy Tricolli (not sure without going to the

truck and getting the cassette, on spelling) titled " Go Light Your

World " ? Has a beautiful meaning in stating that we can be examples to

others. I truly believe there is a higher power in charge of life and

everything happens for a reason. My hopes are I will be able to help

another family member from the knowledge and experience I have from my

own dads life.

Your thoughtfulness and support is appreciated!

Sandie

Des Moines, IA

[Guest guest]

Sandie! Your words are a great help to me and I am sure to others also. Have a

great day! My mother had a pretty good day yesterday.

Jackie

Tifton, GA

Re: Re: What are they thinking?

Jackie

Thank you for such heart warming words. As I have told others, the only

reason I have for strength and courage is prayer. I have found such

peace at times, even in daily living outside LBD, in just praying. Have

you heard the song by Kathy Tricolli (not sure without going to the

truck and getting the cassette, on spelling) titled " Go Light Your

World " ? Has a beautiful meaning in stating that we can be examples to

others. I truly believe there is a higher power in charge of life and

everything happens for a reason. My hopes are I will be able to help

another family member from the knowledge and experience I have from my

own dads life.

Your thoughtfulness and support is appreciated!

Sandie

Des Moines, IA