Re: Don will go in the NH Monday at 11 A.M.

[Guest guest]

Imogene

I am sorry to hear of another set back for you and Don.

Around here if there is a problem with a residents the Social Workers,

Administrator and Head Nurse have to help find

placement before he/she is released.

Please consider having one of the girls contact them and request placement help

for Don. It is no longer a one person concern but

for both of you when it comes to health and safety. I am shocked to hear of a

licensed full care facility treating someone like that. Please consider

contating Ombudsman in your area, something doesn't sound right with how the NH

handled things.

Alzheimer's Association has a 24/7 Hot Line, have you even talked with them?

24/7 Helpline:

I have never used it so am not familiar with them but at this point in time

anything is worth a try for you and Don.

Be safe and take care of yourself

Marilyn

>> This morning at about 6:30 AM the nursing home called and said, " Come and

take your husband home. He went into another patient's room, picked up her cane

and was swinging it around. It scared her half to death. She was screaming to

the top of her lungs. We can't have any of that. "

>

> When I went to the NH I had no coffee and no breakfast, but that was alright.

It was cold and my car was cold. When I went in all his stuff was neatly

stacked on his bed, and some in a bag. They wanted him out of there yesterday!

They were ready for me. A huge man put all our stuff in the car, even two large

office type chairs with wheels and a 19 " TV. My daughter went for his wheel

chair, and pillow, that had already been given to another patient, but she got

it.

>

> He was tickled pink to be home, but promptly went to sleep. After lunch he

was on the toilet and couldn't 'go " . He is constipated big time. I might have

known. I used a suppository. He still couldn't go, and I told him I had

forgotten one of his medications at lunch. That was because he was

argumentative, and agitated with me for no cause at all. My daughter said he was

a little agitated with me at the table, because I gave him half my biscuit. I

didn't catch that, but in the bathroom he said I didn't love him and I could

just go off and do what I wanted to. Perhaps he was still upset because

> I placed him in a NH with constant hollering, and other noises.

>

> Anyway, here I am. After four tries with NHs, I will have it full time. I had

and here making a good lunch, and unloading the cars, but what

about tonight when he still has to go to the bathroom? That does upset me that

he was allowed to get in that fix.

>

> The nurse told me I need a big man here at night for our own safety. I can't

afford it, and the Gov won't pay for that. If I lock him in his room, I have to

pay later. Locking him in the house is enough. He needs to walk around and carry

stacks of small books and papers along with a hairbrush, and what ever else he

can pick up.

>

> I am exhausted so I am sure I won't be able to write so much anymore for a

while, anyway.

>

> So dear Sherry, We will hold each other up until things are better for both

of us, all right? And I hope to read all of our beloved friends continuing to do

as they have done. Reach out and help each other. I appreciate that more than

anyone can know.

>

> Love you all, And wish some sunshine for you today, Sherry,

> Imogene

[Guest guest]

Dearest Joan, here I am again, Tired, but must let you know I have a

beloved friend that is being paid by Medicaid. She will be coming in by 8 AM.

and if all is well she will leave by four. So far she has only worked short

days, but she will increase them to full days. She worked today, for nothing.

Medicaid doesn't pay for weekends.

Gotta go dear one,

Imogene

Love with a smile,

Imogene

Caregiver for my true Texas Gentleman Husband, who was diagnosed with AD

in '05, but correctly diagnosed with LBD in March '06.

A happy personality is contagious. Infect someone today

Yours Truly

In a message dated 2/27/2010 2:54:23 P.M. Central Standard Time,

joan_croft@... writes:

Oh, Imogene!!!

I am sorry that Don has been let go from yet another nursing home.

You should be able to get the help that you need either at home or some

facility that cannot release Don.

Your doctor has told you that you cannot physically go on taking care of

him. There has to be some state or federal funds that will help you out. I

know that you would have to spend down all of your savings (if you have

any) and they can't make you sell your house as long as you live there.

Years down the road, when you are enjoying peaceful eternal life, then the

agencies would get the money that they paid out on your/Don's behalf. You

can't risk your health, Imogene. Get an elder law attorney to help you out

with the proper procedures, etc. I think that with your health problems they

have to swing into action and find a place for Don or some full-time help

for him at home.

Prayers and speedy intervention,

Joan

[Guest guest]

Imogene, I can't believe that you are right back to square one. Something has

to be done to find you some help and hope. I wish I knew what that is but all I

can do is send you and Don some strength and some hugs.

Courage

Re: Re: Don will go in the NH Monday at 11 A.M.

Dear Sherry, I hope the sun is shining for you today. It is fine to cry,

but it is also good to feel the sun on your skin when you get a chance. If

nothing more, I sit in a sunny window.

You have made a new home, and lost your dear husband in a very short time.

You have big time adjustments. So just let your hair down just like you

have done, and then find something soothing just for you. A long warm bath

may do the trick. And dear in the mean time I do hope you feel my arms wrapped

around you in cyber space.

I will be in your position in the not too distant future. So, I do hope

you are here for me too. For now I will tell you my most recent saga.

This morning at about 6:30 AM the nursing home called and said, " Come and

take your husband home. He went into another patient's room, picked up her

cane and was swinging it around. It scared her half to death. She was

screaming to the top of her lungs. We can't have any of that. "

When I went to the NH I had no coffee and no breakfast, but that was

alright. It was cold and my car was cold. When I went in all his stuff was

neatly stacked on his bed, and some in a bag. They wanted him out of there

yesterday! They were ready for me. A huge man put all our stuff in the car,

even

two large office type chairs with wheels and a 19 " TV. My daughter went for

his wheel chair, and pillow, that had already been given to another

patient, but she got it.

He was tickled pink to be home, but promptly went to sleep. After lunch he

was on the toilet and couldn't 'go " . He is constipated big time. I might

have known. I used a suppository. He still couldn't go, and I told him I had

forgotten one of his medications at lunch. That was because he was

argumentative, and agitated with me for no cause at all. My daughter said he

was a

little agitated with me at the table, because I gave him half my biscuit. I

didn't catch that, but in the bathroom he said I didn't love him and I

could just go off and do what I wanted to. Perhaps he was still upset because

I placed him in a NH with constant hollering, and other noises.

Anyway, here I am. After four tries with NHs, I will have it full time. I

had and here making a good lunch, and unloading the cars, but

what about tonight when he still has to go to the bathroom? That does

upset me that he was allowed to get in that fix.

The nurse told me I need a big man here at night for our own safety. I

can't afford it, and the Gov won't pay for that. If I lock him in his room, I

have to pay later. Locking him in the house is enough. He needs to walk

around and carry stacks of small books and papers along with a hairbrush, and

what ever else he can pick up.

I am exhausted so I am sure I won't be able to write so much anymore for a

while, anyway.

So dear Sherry, We will hold each other up until things are better for

both of us, all right? And I hope to read all of our beloved friends

continuing to do as they have done. Reach out and help each other. I

appreciate that

more than anyone can know.

Love you all, And wish some sunshine for you today, Sherry,

Imogene

Love with a smile,

Imogene

Caregiver for my true Texas Gentleman Husband, who was diagnosed with AD

in '05, but correctly diagnosed with LBD in March '06.

A happy personality is contagious. Infect someone today

Yours Truly

In a message dated 2/26/2010 11:50:18 P.M. Central Standard Time,

salozier@... writes:

Oh Imogene you are such a find lady,

I am so glad that you understood where I was coming from because you and

others on this board really did save me so many times over the last 3 years.

I would sit and read and gain strength and feel I should write but did

not have it in me and really could not even think what to write. But the

post here gave me information, had me laughing at times and crying at other

times but most of all I had a wonderful group of people who understood what I

was going through and would stand by me no matter what. I so want to give

back to those still here and the ones to follow so I will post when I can

and continue to read.

I seem to be crying today. I cried when I wrote you because I do care so

much about you and I cried at your answer because you understood and I

guess I am just being a big cry baby today but that is ok too. I hate what you

are having to go through and I hate that poor Don has to fight with old

man Lewy (Lewy really is a mean and cruel old man!!). But you letter to me

" sounded " somehow stronger and more the lovey dear lady I have " heard " in

the post over these years. Thank you for being there and I so hope that in

some small way I have been there for you.

Tonights cry baby in Colorado

LOL LOL

Sherry in Colorado

>

> Darling Sherry in Colorado, How do I answer such a loving insightful

> letter? First,

> I am sure by now you have read that I will not be going to the NH with

> Don. The Doctor settled that for me today.

>

> Yes, I always think I can do it, whatever " it " is. I tend to be a more

> positive person, and never know my limits.

>

> The Doctor told me today that she has been watching me going down for

the

> past few months, and I must take a rest.

>

> One thing though that seems to escape my children, is that I have been

the

> one trying to place him in a suitable NH. This is the fourth NH. I did

> realize down deep somewhere that I couldn't handle anymore.

>

> Darling I am not mad at you. How could I be? You are such a sweetheart

and

> are trying to save me before I completely fall. That is real love. And

I

> Thank you.

>

> The matter of fact way of talking to Don was very early in his disease.

I

> don't do that now. I did tell him I was at the Doctor's today, and had

to

> go back for test.

> I may say to the list that I have to go home, but I sure don't say that

to

> Don. Home is a " no " word.

>

> I wrote the following to Don's cousin;

>

> We placed our beloved Don in a lock down facility near our house, on

> Monday. Tuesday I couldn't visit, because I was totally exhausted.

Wednesday he

> lit up like a Christmas Tree, when I did visit. Again yesterday I was

not

> able to go to see him. But, today, I did. He was lethargic, would hardly

eat,

> and hardly acknowledged my presence. I fed him some and then he said he

> was full. I took him to bed, and he was asleep before I could kiss him.

His

> state left me feeling very bad for him. I saw him go downhill from a

hearty

> eater and walking, to barely being able to stand and not eating in less

> than a week. I think depression has hit him big time. I so very much

wish I

> could do something for him.

>

> I had gone to the doctor, and was a bit late for lunch. Lunch? Ugh!!!

Dry

> Mac and cheese with no salt. A glob of very mushy zucchini Squash, and

a

> piece of plain cake with a dab of Cool Whip on it. I wonder if a hog

would

> have eaten it? The first NH sure did spoil me. They made delicious meals

every

> day.

>

> Love you dear, and don't fret when you want to rescue me. I asked for

input

> and you did so very lovingly.

>

> Your old long lanky (but fat) Friend In Texas

> Imogene

>

>

>

> Love with a smile,

>

> Imogene

>

> Caregiver for my true Texas Gentleman Husband, who was diagnosed with

AD

> in '05, but correctly diagnosed with LBD in March '06.

> A happy personality is contagious. Infect someone today

> Yours Truly

>

>

> In a message dated 2/26/2010 4:57:16 P.M. Central Standard Time,

> salozier@... writes:

>

> Hello Imogene,

>

> Sorry I have not written but I have been down with illness and just did

> not have the energy to use the computer. I have tried to catch up on

what

> you and everyone else are doing.

>

> First let me say that I am so happy that Don is in the NH, for both of

> you! You have been caregiving non-stop for a very long time and you

and I

> both know the toll that takes on our bodies. I too refused to admit

that I

> was not " Super Woman " and could do it all. I see myself in you over

and

> over, always the caregiver, always wanting to make everything right,

always

> looking at how much more you can give and shutting your eyes to your

own

> needs. Yes I know you will tell me that you are taking care of

yourself, I

> would have told you that last Oct and Nov about me. That is just who

we are,

> period. And yes everyone around me told me I was going down, hitting

the

> wall, or what ever they say. Well they were right, I was wrong. My

only

> saving grace was the heartbreak that my Don died. Kind of makes me

feel like

> that movie " Sofie's Choice " (sp). Where she had to pick which of her

two

> children would live and die at hollocost camp.

>

> What has this all got to do with you Dear Lady, well (and I am crying

as I

> write this!) please, please, please lissen to those telling you that

> others can help Don, you do deserve to take care of yourself, and we

all love

> you so much and don't want to suddenly have to deal with your death.

So

> there I have said out loud what a lot of us have been thinking and I

hope you

> are not mad at me but if you are I can take it because I care about you.

>

> I read your words to someone else about stating to Don in a mater of

fact

> way that you were going to work on the computer and that he seemed to

> accept that. Well how about (and no I don't know that this will work)

stating

> mater of fact that " I have an appointment that I have to go to alone.

I

> will be back to see you soon. " It is not a lie, your appointment is to

go

> home and take care of yourself!

>

> Ok, I have had my say. Please believe me that every word was written

with

> love and caring. I so seldom posted when my Don was alive as I did not

> have your strong and entergetic ability. But now that I have rested, I

am

> trying to give back to the group and to you. Your posts often kept me

going

> when I was at my lowest.

>

> Lots of love and hugs,

> Sherry in Colorado

>

>

>

>

[Guest guest]

Dear Imogene,

I'm so sorry to read your news.....  I was hoping that things would work out at

this NH.  I hope that until such time that you can figure out how to get care

on a full time basis that you can get your family in to help you and Don out.

Please try to take care of yourself... you and Don will be in my thoughts.

Sending you love,

Helene

Subject: Re: Re: Don will go in the NH Monday at 11 A.M.

To: LBDcaregivers

Date: Saturday, February 27, 2010, 3:30 PM

 

Dear Sherry, I hope the sun is shining for you today. It is fine to cry,

but it is also good to feel the sun on your skin when you get a chance. If

nothing more, I sit in a sunny window.

You have made a new home, and lost your dear husband in a very short time.

You have big time adjustments. So just let your hair down just like you

have done, and then find something soothing just for you. A long warm bath

may do the trick. And dear in the mean time I do hope you feel my arms wrapped

around you in cyber space.

I will be in your position in the not too distant future. So, I do hope

you are here for me too. For now I will tell you my most recent saga.

This morning at about 6:30 AM the nursing home called and said, " Come and

take your husband home. He went into another patient's room, picked up her

cane and was swinging it around. It scared her half to death. She was

screaming to the top of her lungs. We can't have any of that. "

When I went to the NH I had no coffee and no breakfast, but that was

alright. It was cold and my car was cold. When I went in all his stuff was

neatly stacked on his bed, and some in a bag. They wanted him out of there

yesterday! They were ready for me. A huge man put all our stuff in the car, even

two large office type chairs with wheels and a 19 " TV. My daughter went for

his wheel chair, and pillow, that had already been given to another

patient, but she got it.

He was tickled pink to be home, but promptly went to sleep. After lunch he

was on the toilet and couldn't 'go " . He is constipated big time. I might

have known. I used a suppository. He still couldn't go, and I told him I had

forgotten one of his medications at lunch. That was because he was

argumentative, and agitated with me for no cause at all. My daughter said he was

a

little agitated with me at the table, because I gave him half my biscuit. I

didn't catch that, but in the bathroom he said I didn't love him and I

could just go off and do what I wanted to. Perhaps he was still upset because

I placed him in a NH with constant hollering, and other noises.

Anyway, here I am. After four tries with NHs, I will have it full time. I

had and here making a good lunch, and unloading the cars, but

what about tonight when he still has to go to the bathroom? That does

upset me that he was allowed to get in that fix.

The nurse told me I need a big man here at night for our own safety. I

can't afford it, and the Gov won't pay for that. If I lock him in his room, I

have to pay later. Locking him in the house is enough. He needs to walk

around and carry stacks of small books and papers along with a hairbrush, and

what ever else he can pick up.

I am exhausted so I am sure I won't be able to write so much anymore for a

while, anyway.

So dear Sherry, We will hold each other up until things are better for

both of us, all right? And I hope to read all of our beloved friends

continuing to do as they have done. Reach out and help each other. I appreciate

that

more than anyone can know.

Love you all, And wish some sunshine for you today, Sherry,

Imogene

Love with a smile,

Imogene

Caregiver for my true Texas Gentleman Husband, who was diagnosed with AD

in '05, but correctly diagnosed with LBD in March '06.

A happy personality is contagious. Infect someone today

Yours Truly

In a message dated 2/26/2010 11:50:18 P.M. Central Standard Time,

saloziercomcast (DOT) net writes:

Oh Imogene you are such a find lady,

I am so glad that you understood where I was coming from because you and

others on this board really did save me so many times over the last 3 years.

I would sit and read and gain strength and feel I should write but did

not have it in me and really could not even think what to write. But the

post here gave me information, had me laughing at times and crying at other

times but most of all I had a wonderful group of people who understood what I

was going through and would stand by me no matter what. I so want to give

back to those still here and the ones to follow so I will post when I can

and continue to read.

I seem to be crying today. I cried when I wrote you because I do care so

much about you and I cried at your answer because you understood and I

guess I am just being a big cry baby today but that is ok too. I hate what you

are having to go through and I hate that poor Don has to fight with old

man Lewy (Lewy really is a mean and cruel old man!!). But you letter to me

" sounded " somehow stronger and more the lovey dear lady I have " heard " in

the post over these years. Thank you for being there and I so hope that in

some small way I have been there for you.

Tonights cry baby in Colorado

LOL LOL

Sherry in Colorado

>

> Darling Sherry in Colorado, How do I answer such a loving insightful

> letter? First,

> I am sure by now you have read that I will not be going to the NH with

> Don. The Doctor settled that for me today.

>

> Yes, I always think I can do it, whatever " it " is. I tend to be a more

> positive person, and never know my limits.

>

> The Doctor told me today that she has been watching me going down for

the

> past few months, and I must take a rest.

>

> One thing though that seems to escape my children, is that I have been

the

> one trying to place him in a suitable NH. This is the fourth NH. I did

> realize down deep somewhere that I couldn't handle anymore.

>

> Darling I am not mad at you. How could I be? You are such a sweetheart

and

> are trying to save me before I completely fall. That is real love. And

I

> Thank you.

>

> The matter of fact way of talking to Don was very early in his disease.

I

> don't do that now. I did tell him I was at the Doctor's today, and had

to

> go back for test.

> I may say to the list that I have to go home, but I sure don't say that

to

> Don. Home is a " no " word.

>

> I wrote the following to Don's cousin;

>

> We placed our beloved Don in a lock down facility near our house, on

> Monday. Tuesday I couldn't visit, because I was totally exhausted.

Wednesday he

> lit up like a Christmas Tree, when I did visit. Again yesterday I was

not

> able to go to see him. But, today, I did. He was lethargic, would hardly

eat,

> and hardly acknowledged my presence. I fed him some and then he said he

> was full. I took him to bed, and he was asleep before I could kiss him.

His

> state left me feeling very bad for him. I saw him go downhill from a

hearty

> eater and walking, to barely being able to stand and not eating in less

> than a week. I think depression has hit him big time. I so very much

wish I

> could do something for him.

>

> I had gone to the doctor, and was a bit late for lunch. Lunch? Ugh!!!

Dry

> Mac and cheese with no salt. A glob of very mushy zucchini Squash, and

a

> piece of plain cake with a dab of Cool Whip on it. I wonder if a hog

would

> have eaten it? The first NH sure did spoil me. They made delicious meals

every

> day.

>

> Love you dear, and don't fret when you want to rescue me. I asked for

input

> and you did so very lovingly.

>

> Your old long lanky (but fat) Friend In Texas

> Imogene

>

>

>

> Love with a smile,

>

> Imogene

>

> Caregiver for my true Texas Gentleman Husband, who was diagnosed with

AD

> in '05, but correctly diagnosed with LBD in March '06.

> A happy personality is contagious. Infect someone today

> Yours Truly

>

>

> In a message dated 2/26/2010 4:57:16 P.M. Central Standard Time,

> salozier@... writes:

>

> Hello Imogene,

>

> Sorry I have not written but I have been down with illness and just did

> not have the energy to use the computer. I have tried to catch up on

what

> you and everyone else are doing.

>

> First let me say that I am so happy that Don is in the NH, for both of

> you! You have been caregiving non-stop for a very long time and you

and I

> both know the toll that takes on our bodies. I too refused to admit

that I

> was not " Super Woman " and could do it all. I see myself in you over

and

> over, always the caregiver, always wanting to make everything right,

always

> looking at how much more you can give and shutting your eyes to your

own

> needs. Yes I know you will tell me that you are taking care of

yourself, I

> would have told you that last Oct and Nov about me. That is just who

we are,

> period. And yes everyone around me told me I was going down, hitting

the

> wall, or what ever they say. Well they were right, I was wrong. My

only

> saving grace was the heartbreak that my Don died. Kind of makes me

feel like

> that movie " Sofie's Choice " (sp). Where she had to pick which of her

two

> children would live and die at hollocost camp.

>

> What has this all got to do with you Dear Lady, well (and I am crying

as I

> write this!) please, please, please lissen to those telling you that

> others can help Don, you do deserve to take care of yourself, and we

all love

> you so much and don't want to suddenly have to deal with your death.

So

> there I have said out loud what a lot of us have been thinking and I

hope you

> are not mad at me but if you are I can take it because I care about you.

>

> I read your words to someone else about stating to Don in a mater of

fact

> way that you were going to work on the computer and that he seemed to

> accept that. Well how about (and no I don't know that this will work)

stating

> mater of fact that " I have an appointment that I have to go to alone.

I

> will be back to see you soon. " It is not a lie, your appointment is to

go

> home and take care of yourself!

>

> Ok, I have had my say. Please believe me that every word was written

with

> love and caring. I so seldom posted when my Don was alive as I did not

> have your strong and entergetic ability. But now that I have rested, I

am

> trying to give back to the group and to you. Your posts often kept me

going

> when I was at my lowest.

>

> Lots of love and hugs,

> Sherry in Colorado

>

>

>

> [Non-text portions of this message have been removed]

>

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

Welcome to LBDcaregivers.

[Guest guest]

Imogene,  Is it possible that your Don does these thing just so he knows they

will send him home(where he wants to be).  He doesn't seem to go crazy when he

is at home.

Just a thought,

Kathy, MN

________________________________

To: LBDcaregivers

Sent: Sat, February 27, 2010 6:10:15 PM

Subject: Re: Re: Don will go in the NH Monday at 11 A.M.

 

Dear Imogene,

I'm so sorry to read your news.....  I was hoping that things would work out at

this NH.  I hope that until such time that you can figure out how to get care

on a full time basis that you can get your family in to help you and Don out.

Please try to take care of yourself... you and Don will be in my thoughts.

Sending you love,

Helene

From: Iward27663aol (DOT) com <Iward27663aol (DOT) com>

Subject: Re: Re: Don will go in the NH Monday at 11 A.M.

To: LBDcaregivers@ yahoogroups. com

Date: Saturday, February 27, 2010, 3:30 PM

 

Dear Sherry, I hope the sun is shining for you today. It is fine to cry,

but it is also good to feel the sun on your skin when you get a chance. If

nothing more, I sit in a sunny window.

You have made a new home, and lost your dear husband in a very short time.

You have big time adjustments. So just let your hair down just like you

have done, and then find something soothing just for you. A long warm bath

may do the trick. And dear in the mean time I do hope you feel my arms wrapped

around you in cyber space.

I will be in your position in the not too distant future. So, I do hope

you are here for me too. For now I will tell you my most recent saga.

This morning at about 6:30 AM the nursing home called and said, " Come and

take your husband home. He went into another patient's room, picked up her

cane and was swinging it around. It scared her half to death. She was

screaming to the top of her lungs. We can't have any of that. "

When I went to the NH I had no coffee and no breakfast, but that was

alright. It was cold and my car was cold. When I went in all his stuff was

neatly stacked on his bed, and some in a bag. They wanted him out of there

yesterday! They were ready for me. A huge man put all our stuff in the car, even

two large office type chairs with wheels and a 19 " TV. My daughter went for

his wheel chair, and pillow, that had already been given to another

patient, but she got it.

He was tickled pink to be home, but promptly went to sleep. After lunch he

was on the toilet and couldn't 'go " . He is constipated big time. I might

have known. I used a suppository. He still couldn't go, and I told him I had

forgotten one of his medications at lunch. That was because he was

argumentative, and agitated with me for no cause at all. My daughter said he was

a

little agitated with me at the table, because I gave him half my biscuit. I

didn't catch that, but in the bathroom he said I didn't love him and I

could just go off and do what I wanted to. Perhaps he was still upset because

I placed him in a NH with constant hollering, and other noises.

Anyway, here I am. After four tries with NHs, I will have it full time. I

had and here making a good lunch, and unloading the cars, but

what about tonight when he still has to go to the bathroom? That does

upset me that he was allowed to get in that fix.

The nurse told me I need a big man here at night for our own safety. I

can't afford it, and the Gov won't pay for that. If I lock him in his room, I

have to pay later. Locking him in the house is enough. He needs to walk

around and carry stacks of small books and papers along with a hairbrush, and

what ever else he can pick up.

I am exhausted so I am sure I won't be able to write so much anymore for a

while, anyway.

So dear Sherry, We will hold each other up until things are better for

both of us, all right? And I hope to read all of our beloved friends

continuing to do as they have done. Reach out and help each other. I appreciate

that

more than anyone can know.

Love you all, And wish some sunshine for you today, Sherry,

Imogene

Love with a smile,

Imogene

Caregiver for my true Texas Gentleman Husband, who was diagnosed with AD

in '05, but correctly diagnosed with LBD in March '06.

A happy personality is contagious. Infect someone today

Yours Truly

In a message dated 2/26/2010 11:50:18 P.M. Central Standard Time,

saloziercomcast (DOT) net writes:

Oh Imogene you are such a find lady,

I am so glad that you understood where I was coming from because you and

others on this board really did save me so many times over the last 3 years.

I would sit and read and gain strength and feel I should write but did

not have it in me and really could not even think what to write. But the

post here gave me information, had me laughing at times and crying at other

times but most of all I had a wonderful group of people who understood what I

was going through and would stand by me no matter what. I so want to give

back to those still here and the ones to follow so I will post when I can

and continue to read.

I seem to be crying today. I cried when I wrote you because I do care so

much about you and I cried at your answer because you understood and I

guess I am just being a big cry baby today but that is ok too. I hate what you

are having to go through and I hate that poor Don has to fight with old

man Lewy (Lewy really is a mean and cruel old man!!). But you letter to me

" sounded " somehow stronger and more the lovey dear lady I have " heard " in

the post over these years. Thank you for being there and I so hope that in

some small way I have been there for you.

Tonights cry baby in Colorado

LOL LOL

Sherry in Colorado

>

> Darling Sherry in Colorado, How do I answer such a loving insightful

> letter? First,

> I am sure by now you have read that I will not be going to the NH with

> Don. The Doctor settled that for me today.

>

> Yes, I always think I can do it, whatever " it " is. I tend to be a more

> positive person, and never know my limits.

>

> The Doctor told me today that she has been watching me going down for

the

> past few months, and I must take a rest.

>

> One thing though that seems to escape my children, is that I have been

the

> one trying to place him in a suitable NH. This is the fourth NH. I did

> realize down deep somewhere that I couldn't handle anymore.

>

> Darling I am not mad at you. How could I be? You are such a sweetheart

and

> are trying to save me before I completely fall. That is real love. And

I

> Thank you.

>

> The matter of fact way of talking to Don was very early in his disease.

I

> don't do that now. I did tell him I was at the Doctor's today, and had

to

> go back for test.

> I may say to the list that I have to go home, but I sure don't say that

to

> Don. Home is a " no " word.

>

> I wrote the following to Don's cousin;

>

> We placed our beloved Don in a lock down facility near our house, on

> Monday. Tuesday I couldn't visit, because I was totally exhausted.

Wednesday he

> lit up like a Christmas Tree, when I did visit. Again yesterday I was

not

> able to go to see him. But, today, I did. He was lethargic, would hardly

eat,

> and hardly acknowledged my presence. I fed him some and then he said he

> was full. I took him to bed, and he was asleep before I could kiss him.

His

> state left me feeling very bad for him. I saw him go downhill from a

hearty

> eater and walking, to barely being able to stand and not eating in less

> than a week. I think depression has hit him big time. I so very much

wish I

> could do something for him.

>

> I had gone to the doctor, and was a bit late for lunch. Lunch? Ugh!!!

Dry

> Mac and cheese with no salt. A glob of very mushy zucchini Squash, and

a

> piece of plain cake with a dab of Cool Whip on it. I wonder if a hog

would

> have eaten it? The first NH sure did spoil me. They made delicious meals

every

> day.

>

> Love you dear, and don't fret when you want to rescue me. I asked for

input

> and you did so very lovingly.

>

> Your old long lanky (but fat) Friend In Texas

> Imogene

>

>

>

> Love with a smile,

>

> Imogene

>

> Caregiver for my true Texas Gentleman Husband, who was diagnosed with

AD

> in '05, but correctly diagnosed with LBD in March '06.

> A happy personality is contagious. Infect someone today

> Yours Truly

>

>

> In a message dated 2/26/2010 4:57:16 P.M. Central Standard Time,

> salozier@... writes:

>

> Hello Imogene,

>

> Sorry I have not written but I have been down with illness and just did

> not have the energy to use the computer. I have tried to catch up on

what

> you and everyone else are doing.

>

> First let me say that I am so happy that Don is in the NH, for both of

> you! You have been caregiving non-stop for a very long time and you

and I

> both know the toll that takes on our bodies. I too refused to admit

that I

> was not " Super Woman " and could do it all. I see myself in you over

and

> over, always the caregiver, always wanting to make everything right,

always

> looking at how much more you can give and shutting your eyes to your

own

> needs. Yes I know you will tell me that you are taking care of

yourself, I

> would have told you that last Oct and Nov about me. That is just who

we are,

> period. And yes everyone around me told me I was going down, hitting

the

> wall, or what ever they say. Well they were right, I was wrong. My

only

> saving grace was the heartbreak that my Don died. Kind of makes me

feel like

> that movie " Sofie's Choice " (sp). Where she had to pick which of her

two

> children would live and die at hollocost camp.

>

> What has this all got to do with you Dear Lady, well (and I am crying

as I

> write this!) please, please, please lissen to those telling you that

> others can help Don, you do deserve to take care of yourself, and we

all love

> you so much and don't want to suddenly have to deal with your death.

So

> there I have said out loud what a lot of us have been thinking and I

hope you

> are not mad at me but if you are I can take it because I care about you.

>

> I read your words to someone else about stating to Don in a mater of

fact

> way that you were going to work on the computer and that he seemed to

> accept that. Well how about (and no I don't know that this will work)

stating

> mater of fact that " I have an appointment that I have to go to alone.

I

> will be back to see you soon. " It is not a lie, your appointment is to

go

> home and take care of yourself!

>

> Ok, I have had my say. Please believe me that every word was written

with

> love and caring. I so seldom posted when my Don was alive as I did not

> have your strong and entergetic ability. But now that I have rested, I

am

> trying to give back to the group and to you. Your posts often kept me

going

> when I was at my lowest.

>

> Lots of love and hugs,

> Sherry in Colorado

>

>

>

>

[Guest guest]

That is wonderful news!! Perhaps you can get some help on the weekends for some

other source. Also, did you know that the Alzheimers Association will provide

respite care for you...I think it is about 8 hours a month, but perhaps you

should check into that and maybe that will give you a little 'pampering break'

once in a while.

>

> Dearest Joan, here I am again, Tired, but must let you know I have a

> beloved friend that is being paid by Medicaid. She will be coming in by 8 AM.

> and if all is well she will leave by four. So far she has only worked short

> days, but she will increase them to full days. She worked today, for nothing.

> Medicaid doesn't pay for weekends.

>

> Gotta go dear one,

> Imogene

>

> Love with a smile,

>

> Imogene

>

> Caregiver for my true Texas Gentleman Husband, who was diagnosed with AD

> in '05, but correctly diagnosed with LBD in March '06.

> A happy personality is contagious. Infect someone today

> Yours Truly

>

>

> In a message dated 2/27/2010 2:54:23 P.M. Central Standard Time,

> joan_croft@... writes:

>

> Oh, Imogene!!!

> I am sorry that Don has been let go from yet another nursing home.

> You should be able to get the help that you need either at home or some

> facility that cannot release Don.

>

> Your doctor has told you that you cannot physically go on taking care of

> him. There has to be some state or federal funds that will help you out. I

> know that you would have to spend down all of your savings (if you have

> any) and they can't make you sell your house as long as you live there.

> Years down the road, when you are enjoying peaceful eternal life, then the

> agencies would get the money that they paid out on your/Don's behalf. You

> can't risk your health, Imogene. Get an elder law attorney to help you out

> with the proper procedures, etc. I think that with your health problems they

> have to swing into action and find a place for Don or some full-time help

> for him at home.

>

> Prayers and speedy intervention,

>

> Joan

>

>

>

>

>

[Guest guest]

Oh my Dear Friend,

I am so so very sorry for this to again happen to you. Imogene, have you ever

asked Don's doctor about perscribing Hospice care? Your Don sounds in a more

advanced state of LBD than when my Don went on Hospice Care. Medicare will pick

up all cost for the care and the perscriptions that are for keeping him

comfortable. I challened our Hospice Care about the Aricept and the meds for

keeping Don's blood pressure up and used the information in the files on this

site to show that they worked longer for LBD than for Alzh. and the Hospice care

paid for those meds too. But you are allowed to buy and give any meds that

Hospice will not provide and keep him on those. I had care coming in 3 times a

week to bath him, the nurse came at least 1 time a week and more if I needed

her, the Hospice doctor came to the house 1 time, social worker and religious

support people too. I also was able to get a grant from the Alzh. Assoc. for

$500.00 for respite care so I could take some time off.

Don's doctor really encourage me to take the Hospice Care because he knew that

Medicare would pay for all of it. I am sure that Medicaid would also. You get

to choose the Hospice Care that you want. I picked one from Boulder County

which was not as close as County but I felt it was a better fit for us.

Also they had a Hospice Care Center that would take Don for short times as

needed (say 2 or 3 days if needed). As it turned out when he went to the

Hospice care center he was on his way out of this life but I did not know that

until 2 days later as I watched him slip away from me. Anyway maybe you could

get more help by accessing Hospice care. Just a thought.

I am doing fine today, please do not worry about me just focus on you and Don

and all that you have on your plate. Don't worry about writing to answer me

unless you are truely up to it. You are always in my prayers all day long.

Lots of love coming at you from Colorado,

Sherry in Colorado

> >

> > Darling Sherry in Colorado, How do I answer such a loving insightful

> > letter? First,

> > I am sure by now you have read that I will not be going to the NH with

> > Don. The Doctor settled that for me today.

> >

> > Yes, I always think I can do it, whatever " it " is. I tend to be a more

> > positive person, and never know my limits.

> >

> > The Doctor told me today that she has been watching me going down for

> the

> > past few months, and I must take a rest.

> >

> > One thing though that seems to escape my children, is that I have been

> the

> > one trying to place him in a suitable NH. This is the fourth NH. I did

> > realize down deep somewhere that I couldn't handle anymore.

> >

> > Darling I am not mad at you. How could I be? You are such a sweetheart

> and

> > are trying to save me before I completely fall. That is real love. And

> I

> > Thank you.

> >

> > The matter of fact way of talking to Don was very early in his disease.

> I

> > don't do that now. I did tell him I was at the Doctor's today, and had

> to

> > go back for test.

> > I may say to the list that I have to go home, but I sure don't say that

> to

> > Don. Home is a " no " word.

> >

> > I wrote the following to Don's cousin;

> >

> > We placed our beloved Don in a lock down facility near our house, on

> > Monday. Tuesday I couldn't visit, because I was totally exhausted.

> Wednesday he

> > lit up like a Christmas Tree, when I did visit. Again yesterday I was

> not

> > able to go to see him. But, today, I did. He was lethargic, would hardly

> eat,

> > and hardly acknowledged my presence. I fed him some and then he said he

> > was full. I took him to bed, and he was asleep before I could kiss him.

> His

> > state left me feeling very bad for him. I saw him go downhill from a

> hearty

> > eater and walking, to barely being able to stand and not eating in less

>

> > than a week. I think depression has hit him big time. I so very much

> wish I

> > could do something for him.

> >

> > I had gone to the doctor, and was a bit late for lunch. Lunch? Ugh!!!

> Dry

> > Mac and cheese with no salt. A glob of very mushy zucchini Squash, and

> a

> > piece of plain cake with a dab of Cool Whip on it. I wonder if a hog

> would

> > have eaten it? The first NH sure did spoil me. They made delicious meals

> every

> > day.

> >

> > Love you dear, and don't fret when you want to rescue me. I asked for

> input

> > and you did so very lovingly.

> >

> > Your old long lanky (but fat) Friend In Texas

> > Imogene

> >

> >

> >

> > Love with a smile,

> >

> > Imogene

> >

> > Caregiver for my true Texas Gentleman Husband, who was diagnosed with

> AD

> > in '05, but correctly diagnosed with LBD in March '06.

> > A happy personality is contagious. Infect someone today

> > Yours Truly

> >

> >

> > In a message dated 2/26/2010 4:57:16 P.M. Central Standard Time,

> > salozier@ writes:

> >

> > Hello Imogene,

> >

> > Sorry I have not written but I have been down with illness and just did

> > not have the energy to use the computer. I have tried to catch up on

> what

> > you and everyone else are doing.

> >

> > First let me say that I am so happy that Don is in the NH, for both of

> > you! You have been caregiving non-stop for a very long time and you

> and I

> > both know the toll that takes on our bodies. I too refused to admit

> that I

> > was not " Super Woman " and could do it all. I see myself in you over

> and

> > over, always the caregiver, always wanting to make everything right,

> always

> > looking at how much more you can give and shutting your eyes to your

> own

> > needs. Yes I know you will tell me that you are taking care of

> yourself, I

> > would have told you that last Oct and Nov about me. That is just who

> we are,

> > period. And yes everyone around me told me I was going down, hitting

> the

> > wall, or what ever they say. Well they were right, I was wrong. My

> only

> > saving grace was the heartbreak that my Don died. Kind of makes me

> feel like

> > that movie " Sofie's Choice " (sp). Where she had to pick which of her

> two

> > children would live and die at hollocost camp.

> >

> > What has this all got to do with you Dear Lady, well (and I am crying

> as I

> > write this!) please, please, please lissen to those telling you that

> > others can help Don, you do deserve to take care of yourself, and we

> all love

> > you so much and don't want to suddenly have to deal with your death.

> So

> > there I have said out loud what a lot of us have been thinking and I

> hope you

> > are not mad at me but if you are I can take it because I care about you.

> >

> > I read your words to someone else about stating to Don in a mater of

> fact

> > way that you were going to work on the computer and that he seemed to

> > accept that. Well how about (and no I don't know that this will work)

> stating

> > mater of fact that " I have an appointment that I have to go to alone.

> I

> > will be back to see you soon. " It is not a lie, your appointment is to

> go

> > home and take care of yourself!

> >

> > Ok, I have had my say. Please believe me that every word was written

> with

> > love and caring. I so seldom posted when my Don was alive as I did not

> > have your strong and entergetic ability. But now that I have rested, I

> am

> > trying to give back to the group and to you. Your posts often kept me

> going

> > when I was at my lowest.

> >

> > Lots of love and hugs,

> > Sherry in Colorado

> >

> >

> >

> > [Non-text portions of this message have been removed]

> >

>

>

>

>

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

>

> Welcome to LBDcaregivers.

>

>

[Guest guest]

Hi Marilyn, Good suggestions there. Yes, I plan to report them and the

other three NHs that Don has been in. Right now, you catch more flies with

honey. I want to talk very nice to them to get them to debit Medicaid for his

so called care. He was in four days and they sent me the bill, and that I

had to pay by the first. " Rocks a ruck buddy. " I was floored at the cost of

his stay in that place which was over a thousand a day.

I never reported any of the NHs because I always said, " I can't because I

need them. " Word gets around if you report, and then they are suddenly all

full. I am trying to be like our dear Sherry s that remained kind and

was able to keep her mother in the one place. I can't keep Don anywhere. He

is too aggressive and agitated.

I tried to close his door so that he could sleep better, and the nurse

opened it. She said we leave the doors open so that we can watch them. There

was no chance that he would get any rest. But, their allowing him to become

so constipated was inexcusable. I warned them over and over about him

needing his rest, about constipation, a UTI, or pneumonia.

That constipation is what sent him off the deep end in spite of Seroquel.

Yes, I am angry, and yes, I will do something. Well, needing them has been

eliminated by them, so now they will be reported. I have had it up the here

with NHs! Supposedly good NHs aren't worth anything when they can't, and

won't, even try to learn how to handle an LBD patient.

And yes, I will get hospice, too. I have a full time girl that we both

love no end like our children. But, when and where I can I will get more help.

called again today to see how we are and if I need her. I told her

we were coasting. I got Don up at 4AM and let him use his potty chair by

his bed. He slept well until nearly 9:30. He was so stiff with Parkinson's

and shaky that I had a rough time getting him on the potty.

I have another daughter in town, but she has health problems and her

husband is just about as bad off as Don. Very bad heart. She works full time

and

then goes home to care for him. I don't ask anything from her, as she just

can't.

And what good are most men? Not much. Let me tell you. They love us and

yet, when it comes to illness they seem to run in the other direction. Oh,

when the chips are really down and can't do things they will go to

the store for a few items, but hands on care, no. Once in a while an

important repair will be made.

Love so very much,

Imogene

Love with a smile,

Imogene

Caregiver for my true Texas Gentleman Husband, who was diagnosed with AD

in '05, but correctly diagnosed with LBD in March '06.

A happy personality is contagious. Infect someone today

Yours Truly

In a message dated 2/27/2010 4:52:55 P.M. Central Standard Time,

marilynkcgw@... writes:

Imogene

I am sorry to hear of another set back for you and Don.

Around here if there is a problem with a residents the Social Workers,

Administrator and Head Nurse have to help find

placement before he/she is released.

Please consider having one of the girls contact them and request placement

help for Don. It is no longer a one person concern but

for both of you when it comes to health and safety. I am shocked to hear

of a licensed full care facility treating someone like that. Please

consider contating Ombudsman in your area, something doesn't sound right with

how

the NH handled things.

Alzheimer's Association has a 24/7 Hot Line, have you even talked with

them? 24/7 Helpline:

I have never used it so am not familiar with them but at this point in

time anything is worth a try for you and Don.

Be safe and take care of yourself

Marilyn

[Guest guest]

Hi dear Helene,

My family is watching out for us. Also I have a full time girl. She was

part time, but now it is obvious that we need her full time, and she is more

than willing. was here Saturday, ran a bunch of errands, (food and

medicine), after she helped move us back in the house. And then, she cooked

a delicious meal. Today she called. We had some delicious Gumbo She made

previously and put in our freezer. We had biscuits, sliced avocado, and

mango. We loved our lunch, and Don ate hearty. So I am getting help. The

other girls are out of town.

Thanks darling for your concern,

Love a bunch,

Imogene

Love with a smile,

Imogene

Caregiver for my true Texas Gentleman Husband, who was diagnosed with AD

in '05, but correctly diagnosed with LBD in March '06.

A happy personality is contagious. Infect someone today

Yours Truly

In a message dated 2/27/2010 6:10:25 P.M. Central Standard Time,

hgm54@... writes:

Dear Imogene,

I'm so sorry to read your news..... I was hoping that things would work

out at this NH. I hope that until such time that you can figure out how to

get care on a full time basis that you can get your family in to help you

and Don out.

Please try to take care of yourself... you and Don will be in my thoughts.

Sending you love,

Helene

[Guest guest]

Hi dear Kathy,

That is a good thought. If you had ever seen my Don going on a rampage you

would see a different person, that doesn't know he is doing it. He is

glassy eyed, and totally out of it. It was caused by constipation and a lack of

proper rest.

No, he doesn't do it at home, not so bad anyway, as I know how to take

excellent care of him and head those Rampages off. One on one care is far

superior to a very noisy, Lock-down unit. Or anywhere that is noisy. He can't

stand noise.

He is dearly loved here at home, and has the best of care, so of course he

isn't going to be so bad at home. One doctor told me to keep him at home

if at all possible as he would be far better of there. And he is. But, then

I'm not. I placed him in four places because I know my health is suffering.

I will get all the help I can.

Love you dear,

Imogene

Love you dear,

Imogene

Love with a smile,

Imogene

Caregiver for my true Texas Gentleman Husband, who was diagnosed with AD

in '05, but correctly diagnosed with LBD in March '06.

A happy personality is contagious. Infect someone today

Yours Truly

In a message dated 2/27/2010 7:21:03 P.M. Central Standard Time,

agerkathryn@... writes:

Imogene, Is it possible that your Don does these thing just so he knows

they will send him home(where he wants to be). He doesn't seem to go crazy

when he is at home.

Just a thought,

Kathy, MN

[Guest guest]

Dear Joan, I will get some help somewhere, and it just may very well be

Hospice on the weekends, At least one day.

Love a lot,

Imogene

Love with a smile,

Imogene

Caregiver for my true Texas Gentleman Husband, who was diagnosed with AD

in '05, but correctly diagnosed with LBD in March '06.

A happy personality is contagious. Infect someone today

Yours Truly

In a message dated 2/27/2010 10:55:07 P.M. Central Standard Time,

joan_croft@... writes:

That is wonderful news!! Perhaps you can get some help on the weekends

for some other source. Also, did you know that the Alzheimers Association

will provide respite care for you...I think it is about 8 hours a month, but

perhaps you should check into that and maybe that will give you a little

'pampering break' once in a while.

[Guest guest]

Imogene,

The move went well, and the studio apartment she has looks great with the

furniture and pictures we chose for her. In many ways it looks like the

apartment where she and Dad lived.  She seems to be settling in okay, although

the other residents are " crazier than I am " . The nursing staff messed up on her

meds the first two  days but we have that straigthened out, I hope. What is

really amazing is that Dad walked from his apartment to hers all by himself on

Friday while my husband and I were at work. This just might be okay. I know I

feel less stress than I have in months.

Hope everyting contiues to be positive with Don's move to the Nursing Home.

Barbara, caregiver to mother Betsy, diagnosed 2008.

________________________________

To: LBDcaregivers

Sent: Mon, February 22, 2010 4:19:49 PM

Subject: Re: Don will go in the NH Monday at 11 A.M.

Hi Barbara, It has happened and I feel he will be made happy. 

Have you looked into Medicaid for your mother? A person doesn't  have to be

destitute to have the kind of Medicaid we have. We still have our 

Medicare, and I still get both our SS checks. But, our Medicaid pays for either 

a

caregiver or a nursing home. 

You may talk to an Elder Attorney and get advise on it, or talk to  your

Social Security office. I really don't know who to talk to because we got  it

when Don went to his first NH and a family friend set it up for us. After he

was home and we asked for help through the Medicaid office using Don's

number, a  lady came out and signed us both up for it. She took one look at me,

and then I  showed her my Medical history, and that is when she said I

needed it  too.

Hope this will ease you mother's mind. Also I will send you a  letter I

sent to someone else to show you how positive a place can feel.  to wit:

Yes, I already figured out how to rearrange the furniture to make a 

sitting area for us to watch TV together, or for me to read when he sleeps. I 

can

put in a nice chest of drawers and my computer. They have Cable. Right  now

he is in a room by himself. I hope it stays that way. They needed the extra

bed somewhere else. In time the bed will come back.

Oh yes, there is a magnolia tree in a small court yard out his  window

which will make an idea spot for our bird feeder, and  bath.

My legs have been so swollen lately that I am sure I have heart  failure,

and may go in there with Don. We'll see. I won't move quickly on  that score.

But, you can see my wheels have been turning. )

It isn't all depressing. It is all in how you perceive it. It can  be a

happy little home, or a hell hole.

Hang in there Dear Barbara,

Love with  a smile,

Imogene

Caregiver for my true Texas Gentleman Husband,  who was diagnosed with AD

in '05, but correctly diagnosed with LBD in March  '06.

A happy personality is contagious. Infect someone today

Yours Truly 

In a message dated 2/21/2010 3:19:10 P.M. Central Standard Time, 

barbara_austen@... writes:

Imogene,  that is terrific news!  Your patience and persistence has paid

off. Now  you can look after yourself more, which you certainly deserve.

Mom  moves to the dementia unit on Thursday. Today, she was in tears

because of th  cost, and said she should just die. Gave her a hug and said that

was not  what we wanted at all and not to worry about the cost. I am

anticipating a lot  more confusion as the week progresses.

Barbara, caretaker of her mother  Betsy, diagnosed  2008.

[Guest guest]

Marilyn is right. It gives me (the daughter) great satisfaction to be able to

care for my parents after all the years they have cared for me, even as an

adult.  It  can indeed be a burden sometimes, but I would not have it any other

way.

Barbara, caregiver for her mother Betsy, diagnosed in 2008

________________________________

To: LBDcaregivers

Sent: Thu, February 25, 2010 7:55:27 PM

Subject: Re: Don will go in the NH Monday at 11 A.M.

Imogene

Do you plan on living in the same room or level of care that Don has or do they

have assisted living rooms that allow you to live in the same facility but

different room / section.  Several of the seniors I worked with enjoyed being in

the same facility but having some down time by having their own room.  It was

the best of both worlds for them.  Just please remember to take care of yourself

too. 

In the cycle of life what parents have given to their children comes back around

and the children can give back to them.  It is more a blessing than a burden.

Hugz

Marilyn

 

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

Welcome to LBDcaregivers. 

[Guest guest]

Imogene,

How sorry I am to hear of Don's abrupt discharge from the nursing home. We were

so hopeful for you, but glad now that you have some help at home.

As someone else already noted, please consider hospice. Mom's doctor's office

offered it to us and we said yes (it's been 25 months now, but that is up to

them to recertify her for coverage). In our case hospice provides a nurse once

a week to make a physical assessment and to bring meds, and a bath aide three

times per week. They've been awesome. There are more services if you like,

such as a chaplain, social worker, and even volunteers who will come for an hour

or two per week.

More than anything, what enabled us to care for my mom in our home was sleep.

When Mom wasn't sleeping well at night and was still walking, that meant hiring

nighttime caregivers. Since I allowed the caregivers to sleep if Mom slept,

they worked 10 hours for just $60. We could afford twice a week and that made

all the difference because we got at least two uninterrupted nights of sleep per

week.

(As Mom declined the neurologist wanted the Seroquel dosage increased and since

he ordered 100 mg. of Seroquel at bedtime she sleeps all night (and she has

declined to the point where she is completely bedbound, no longer moving), so we

no longer need the nighttime caregivers.)

Please accept all help that is offered and we'll hope for a perfect schedule

that gives you the right amount of help that you need.

Here's to plenty of sleep and sweet dreams,

Sheila in IN

Daughter of Louise, age 87, dx LBD 7/2007

Seroquel 9AM- 25 mg, 3PM- 62.5 mg, 9PM -100 mg.

[Guest guest]

Hi Sherry in Colorado, Yes, dear, I have just talked to the doctor about

having Hospice, and she does not think it is too early for him either. She

will send someone out very soon. She is also ordering 25 mg tablets of

Seroquel in addition

to the fifty he is getting in the evening. I can give the 25 as needed. I

like to give him one at noon, and then he is pleasant in the late afternoon.

Thank you so much for your loving concern. It feels good to be cared

about, and I care about you, too.

Love a lot,

Imogene

Love with a smile,

Imogene

Caregiver for my true Texas Gentleman Husband, who was diagnosed with AD

in '05, but correctly diagnosed with LBD in March '06.

A happy personality is contagious. Infect someone today

Yours Truly

In a message dated 2/28/2010 12:27:41 A.M. Central Standard Time,

salozier@... writes:

Oh my Dear Friend,

I am so so very sorry for this to again happen to you. Imogene, have you

ever asked Don's doctor about perscribing Hospice care? Your Don sounds in

a more advanced state of LBD than when my Don went on Hospice Care.

Medicare will pick up all cost for the care and the perscriptions that are for

keeping him comfortable. I challened our Hospice Care about the Aricept and

the meds for keeping Don's blood pressure up and used the information in

the files on this site to show that they worked longer for LBD than for

Alzh. and the Hospice care paid for those meds too. But you are allowed to buy

and give any meds that Hospice will not provide and keep him on those. I

had care coming in 3 times a week to bath him, the nurse came at least 1

time a week and more if I needed her, the Hospice doctor came to the house 1

time, social worker and religious support people too. I also was able to

get a grant from the Alzh. Assoc. for $500.00 for respite care so I could

take some time off

..

Don's doctor really encourage me to take the Hospice Care because he knew

that Medicare would pay for all of it. I am sure that Medicaid would also.

You get to choose the Hospice Care that you want. I picked one from

Boulder County which was not as close as County but I felt it was a

better fit for us. Also they had a Hospice Care Center that would take Don for

short times as needed (say 2 or 3 days if needed). As it turned

out when he went to the Hospice care center he was on his way out of this

life but I did not know that until 2 days later as I watched him slip away

from me. Anyway maybe you could get more help by accessing Hospice care.

Just a thought.

I am doing fine today, please do not worry about me just focus on you and

Don and all that you have on your plate. Don't worry about writing to

answer me unless you are truely up to it. You are always in my prayers all day

long.

Lots of love coming at you from Colorado,

Sherry in Colorado

[Guest guest]

Darling Barbara, by now I am sure you have caught up on all the mail, and

know that we positively can't place Don in another NH. He is back home in

five days. All four NHs have kicked him out. He gets aggressive, agitated,

goes on rampages, walked into a field next door in 30 degree temp while

wearing summer clothes, and at one home he hurt a man. So, that is the end of

NH

care. He does better here because of good care. I don't let him get

constipated, or sick in anyway, and if he does I do something about it right

now!

He is kept clean, well fed and is loved no end. And has a quiet place to

rest which is highly important.

So here we are back to the drawing board. )

Love a lot,

Imogene

Love with a smile,

Imogene

Caregiver for my true Texas Gentleman Husband, who was diagnosed with AD

in '05, but correctly diagnosed with LBD in March '06.

A happy personality is contagious. Infect someone today

Yours Truly

In a message dated 2/28/2010 10:58:31 A.M. Central Standard Time,

barbara_austen@... writes:

Imogene,

The move went well, and the studio apartment she has looks great with the

furniture and pictures we chose for her. In many ways it looks like the

apartment where she and Dad lived. She seems to be settling in okay, although

the other residents are " crazier than I am " . The nursing staff messed up

on her meds the first two days but we have that straigthened out, I hope.

What is really amazing is that Dad walked from his apartment to hers all by

himself on Friday while my husband and I were at work. This just might be

okay. I know I feel less stress than I have in months.

Hope everyting contiues to be positive with Don's move to the Nursing Home.

Barbara, caregiver to mother Betsy, diagnosed 2008.

[Guest guest]

Hi Sheila,

Hospice will come soon. They have received our Doctor's orders. I have

always had help, but not night time or early morning help. That is when my

back can't stand trying to help him. Just too stiff. Our girl bathes him

three times a week, and has for a long time now. She prepares meals for us, and

cleans the house.

Sleep is something I don't get due to my own health. Don wakes me very

little. When I am up I will check on him and take care of whatever needs done.

He did wake me at 6:30 this morning when I had just fallen into a good

deep sleep. He needed his diaper changed. I changed him, and put him back to

bed. I went to bed too, but it was no use, so just got up. I was up last

night just about every hour on the hour. So, today I am exhausted. It isn't

easy getting old by any means.

Thanks for your kind suggestions,

Love a lot,

Imogene

Love with a smile,

Imogene

Caregiver for my true Texas Gentleman Husband, who was diagnosed with AD

in '05, but correctly diagnosed with LBD in March '06.

A happy personality is contagious. Infect someone today

Yours Truly

In a message dated 2/28/2010 5:34:05 P.M. Central Standard Time,

gfam77@... writes:

Imogene,

How sorry I am to hear of Don's abrupt discharge from the nursing home.

We were so hopeful for you, but glad now that you have some help at home.

As someone else already noted, please consider hospice. Mom's doctor's

office offered it to us and we said yes (it's been 25 months now, but that is

up to them to recertify her for coverage). In our case hospice provides a

nurse once a week to make a physical assessment and to bring meds, and a

bath aide three times per week. They've been awesome. There are more

services if you like, such as a chaplain, social worker, and even volunteers

who

will come for an hour or two per week.

More than anything, what enabled us to care for my mom in our home was

sleep. When Mom wasn't sleeping well at night and was still walking, that

meant hiring nighttime caregivers. Since I allowed the caregivers to sleep if

Mom slept, they worked 10 hours for just $60. We could afford twice a

week and that made all the difference because we got at least two

uninterrupted nights of sleep per week.

(As Mom declined the neurologist wanted the Seroquel dosage increased and

since he ordered 100 mg. of Seroquel at bedtime she sleeps all night (and

she has declined to the point where she is completely bedbound, no longer

moving), so we no longer need the nighttime caregivers.)

Please accept all help that is offered and we'll hope for a perfect

schedule that gives you the right amount of help that you need.

Here's to plenty of sleep and sweet dreams,

Sheila in IN

Daughter of Louise, age 87, dx LBD 7/2007

Seroquel 9AM- 25 mg, 3PM- 62.5 mg, 9PM -100 mg.

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

Welcome to LBDcaregivers.