Imogene

[Guest guest]

Hi Leona,

We had the p/t, home health care worker, and social worker through medicare -

but it was only for a month.. and Mom is not eligible again for another 6

months. It was a godsend to have someone come over to help my aunt and give her

some respite every couple of days. And it was all covered! I have to find out

if my Mom was considered " housebound, " since she can very very slowly get

around. It does take forever to get her up and down stairs, and it is a chore

for her as well as whomever is getting her up and down the stairs...

Hope you are doing well, dear Leona,

Helene

(Mom, 75, Bronx, NY)

>

> I am so sorry that you are having such a rough time. I wish there was

> something that could be done. You don't have any of the children that are

> local there? Would it be possible to take Don for rides so someone could

> come in and do housework for a couple hours every other day? I know that

> here in NY if a person is " housebound " we can get Public Health ( from the

> county) and evaluate the need. If you are eligible Medicare covers the

> services. We had a social worker, a nurse, a home health aide. The aide did

> personal care and light housework. It was a god send. I went down for coffee

> while she took care of things at the house. What might work if there was a

> male nurse or aid that would come in and help with Don's care. Maybe that

> wouldn't be so upsetting to him. We have a Office for the Aging that helps

> with information for services for us. Don should really be in a nursing

> home but I know that has not worked out for you. I just worry about you. I

> send my prayers and moral support to you always. Love, Leona

>

> Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's

> Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

> slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing

> Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have

> ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in

> Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14,

> 2009. I am handling it OK.

>

>

>

> 'Love is not finding someone to live with; it's finding someone you don't

> want to live without.'

>

[Guest guest]

Precious Leona, We both have medicare and medicaid. The Medicaid will pay

for

a caregiver and light house keeping. If the need arises, then it will also

cover a nurse's visit. The caregiver worked with Don from 9:AM to 1:PM. My

caregiver was to work from 1:PM to 4:30PM. We can't stand people in this

small house all day.

We have determined that this house is too small, and sound travels very

badly. We have tile floors which has created the problem. I can't take Don on

a ride every day. Neither of us could stand the noise. We have been use to

a quiet home, and a third energetic person was like having a grandkid

over, with them making a racket for four hours straight every day. I can't rest

with all the activity going on, and Don certainly couldn't.

I don't know how I will handle it, but am thinking that when he gets worse

off, and can't get around by himself, then some NH may accept him. He has

a terrible time getting out of chairs now. Much of the time I have to help

him, by him taking my hands and I lean back and pull up as he pulls up.

I asked the agency lady if our medicaid could be put on hold until we need

them bad enough. She indicated that it could. We haven't closed the door

on all care.

I think Don would like a male caregiver. I don't know how an aid will do

on house work. Some men are excellent, but that remains to be seen.

My children can't help anymore than is being done already. The one

daughter does my shopping when I send her a list. She is a sweetheart. She

works,

and can't do more.

I have another daughter here in town, that can teach five subjects in high

school, and is working her way up in administration. I never hear from her

anymore. I don't think they know how to be around a mentally ill person,

or to even talk about it. The other girls do not live here.

Don has three children, and neither of his girls have called about their

daddy, much less come to see him. I just don't understand our children

anymore. When we are playful and outgoing, we get responses, but when the chips

are down. Nothing. So I am in the same boat as many of you on here.

Love with a smile,

Imogene

Caregiver for my True Texas Gentleman Husband. Diagnosed with AD in 2005.

And then, with LBD 2006.

A happy personality is contagious. Infect someone today.

Yours Truly

In a message dated 9/19/2009 9:00:48 A.M. Central Daylight Time,

lchere@... writes:

I am so sorry that you are having such a rough time. I wish there was

something that could be done. You don't have any of the children that are

local there? Would it be possible to take Don for rides so someone could

come in and do housework for a couple hours every other day? I know that

here in NY if a person is " housebound " we can get Public Health ( from the

county) and evaluate the need. If you are eligible Medicare covers the

services. We had a social worker, a nurse, a home health aide. The aide

did

personal care and light housework. It was a god send. I went down for

coffee

while she took care of things at the house. What might work if there was a

male nurse or aid that would come in and help with Don's care. Maybe that

wouldn't be so upsetting to him. We have a Office for the Aging that helps

with information for services for us. Don should really be in a nursing

home but I know that has not worked out for you. I just worry about you. I

send my prayers and moral support to you always. Love, Leona

Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual

downhill

slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing

Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have

ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in

Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14,

2009. I am handling it OK.

[Guest guest]

Helena dear, Your Mom can get Medicaid for personal care in the home, and

retain her Medicare. This is not permanent Medicaid. It is for a caregiver

for a set time each day. There are strings attached. They will take her

house when she dies, to reimburse them for the care that was given.

Love with a smile,

Imogene

Caregiver for my True Texas Gentleman Husband. Diagnosed with AD in 2005.

And then, with LBD 2006.

A happy personality is contagious. Infect someone today.

Yours Truly

In a message dated 9/19/2009 11:52:19 A.M. Central Daylight Time,

hgm54@... writes:

Hi Leona,

We had the p/t, home health care worker, and social worker through

medicare - but it was only for a month.. and Mom is not eligible again for

another

6 months. It was a godsend to have someone come over to help my aunt and

give her some respite every couple of days. And it was all covered! I

have to find out if my Mom was considered " housebound, " since she can very

very slowly get around. It does take forever to get her up and down stairs,

and it is a chore for her as well as whomever is getting her up and down the

stairs...

Hope you are doing well, dear Leona,

Helene

(Mom, 75, Bronx, NY)

[Guest guest]

Hey Elaine, Thank you, and I wish your daughter peace, happiness, and

love, too.

You are so sweet.

Love with a smile,

Imogene

Caregiver for my True Texas Gentleman Husband. Diagnosed with AD in 2005.

And then, with LBD 2006.

A happy personality is contagious. Infect someone today.

Yours Truly

In a message dated 9/21/2009 11:54:08 A.M. Central Daylight Time,

el62671@... writes:

Happy Birthday, Imogene. Today is our daughters birthday, also, and I

will wish you the same as I wished her. Peace, Happiness and Love! Best

wishes. Elaine from Michigan

[Guest guest]

Happy Birthday, Imogene. Today is our daughters birthday, also, and I will wish

you the same as I wished her. Peace, Happiness and Love! Best wishes. Elaine

from Michigan

[Guest guest]

Imogene, I have started to send you a note a couple of times but each time I

just cannot find words to express how I feel. I just hope that your caregiver

help can stay with you as long as you need her. It is times like these that I

think many of us would like to clone ourselves and come give a helping hand. Be

careful.

Lorraine

>

> Joan, my dear friend, I am so tired I can hardly write. I had a toss and

> turn night, and finally got up at five-thirty. Had coffee and breakfast,

> looked at the want ads

> some ( you know, I want this I want that, that comes out in Circulars?) At

> a few minutes after seven, the NH called.

>

> " Your husband was up all night. " All night? " " Yes, all night. " He was

> wandering all night. We redirected him several times away from the doors. "

>

> " Come morning, we put him at the breakfast table to wait for breakfast. In

> the mean time the staff was changing diapers and preparing residents to

> have breakfast. "

>

> " We heard the alarm go off, and nurses ran in every direction to find who

> tripped the alarm. They found your husband in the vacant lot next door that

> has construction going on. He was on his hands and knees, as he had fallen.

> He only had street clothes on and a sheet wrapped around his shoulders. "

> (It was Thirty degrees this morning.)

>

> " Will you please come and get him? We don't have the faclitity to care for

> someone that wanders "

>

> So, I ran up to the nursing home as fast as I could. He was having

> breakfast. I packed his clothes and hauled them to the car. (My back is

killing

> me.) A fire truck and two ambulances came and I had to move my car. It was so

> cold and I had left my coat inside. How did Don stand it?

>

> The nurse filled out the paper work, and talked to me for a while. She was

> a doll. I know why Don loved her. She was most concerned for me. I ran to

> the nursing home with my jeans and no makeup. I looked like death warmed

> over. She asked if I was alright?

>

> I got him home and called my daughter and caregiver. I put his shoes back

> on no less than four times in the first few hours he was home. So? Bending

> over hurts so bad I can hardly handle it, even when sitting, that's why I

> told it.

>

> , my daughter, went shopping for me and when she came I felt like

> crying, but held it in check the best I could.

>

> He was so edgy all day that I couldn't get him to nap. He was sure I was

> going to leave him. I had dozens of little things to do to make things right

> after bringing him home. I fed him and put my medicine in the weekly

> planner, and finally put some of his things away. Right now I have a ham in

the

> oven. I am sure glad I have it.

>

> So there you have the trials and tribulations of caregiving. Who is going

> to care for me? Don asked me today who was oldest, me or him? I told him I

> was two years older than him, and yet I was his caregiver. He wanted to know

> why we couldn't buy our own nursing home?

>

> And on that note I'll sign off.

> Love a lot,

> Imogene

[Guest guest]

Dear Imogene-

My oh my! My heart goes out to you and prayers are going up for strength for

your days ahead.

Isn't there a NH with a dementia unit near you that would be able to care for

Don? We have a facility in Des Moines that is 3 floors, a large facility, that

is nothing but dementia residents. There is a waiting list to get in there. I

had put my dad on the list and remember getting a call shortly after he passed

away.

I am worried about your health. I have sent up prayers for you and for Don and

will continue to do so.

Positive thoughts with hugs and prayers-

Sandie

Des Moines, IA where it's snowing once again!

----- Re: Re: Introduction/ OT

Date: Sun, 31 Jan 2010 18:25:15 EST

Joan, my dear friend, I am so tired I can hardly write. I had a toss and

turn night, and finally got up at five-thirty. Had coffee and breakfast,

looked at the want ads

some ( you know, I want this I want that, that comes out in Circulars?) At

a few minutes after seven, the NH called.

" Your husband was up all night. " All night? " " Yes, all night. " He was

wandering all night. We redirected him several times away from the doors. "

" Come morning, we put him at the breakfast table to wait for breakfast. In

the mean time the staff was changing diapers and preparing residents to

have breakfast. "

" We heard the alarm go off, and nurses ran in every direction to find who

tripped the alarm. They found your husband in the vacant lot next door that

has construction going on. He was on his hands and knees, as he had fallen.

He only had street clothes on and a sheet wrapped around his shoulders. "

(It was Thirty degrees this morning.)

" Will you please come and get him? We don't have the faclitity to care for

someone that wanders "

So, I ran up to the nursing home as fast as I could. He was having

breakfast. I packed his clothes and hauled them to the car. (My back is killing

me.) A fire truck and two ambulances came and I had to move my car. It was so

cold and I had left my coat inside. How did Don stand it?

The nurse filled out the paper work, and talked to me for a while. She was

a doll. I know why Don loved her. She was most concerned for me. I ran to

the nursing home with my jeans and no makeup. I looked like death warmed

over. She asked if I was alright?

I got him home and called my daughter and caregiver. I put his shoes back

on no less than four times in the first few hours he was home. So? Bending

over hurts so bad I can hardly handle it, even when sitting, that's why I

told it.

, my daughter, went shopping for me and when she came I felt like

crying, but held it in check the best I could.

He was so edgy all day that I couldn't get him to nap. He was sure I was

going to leave him. I had dozens of little things to do to make things right

after bringing him home. I fed him and put my medicine in the weekly

planner, and finally put some of his things away. Right now I have a ham in the

oven. I am sure glad I have it.

So there you have the trials and tribulations of caregiving. Who is going

to care for me? Don asked me today who was oldest, me or him? I told him I

was two years older than him, and yet I was his caregiver. He wanted to know

why we couldn't buy our own nursing home?

And on that note I'll sign off.

Love a lot,

Imogene

In a message dated 1/30/2010 8:20:37 P.M. Central Standard Time,

joan_croft@... writes:

Imogene,

I believe that you could make tons of money just writing articles...or

maybe a book...about your life. You write so well and spell the whole scene

out as if I were there with you as you were hanging the frozen laundry.

I hope that you are feeling better each day, and pray that Don will

continue to do well in the current NH.

Take care, and God bless

Joan

[Guest guest]

Imogene: What a terrible turn things have taken for you and Don. That is

disgraceful the way that NH treated you. You shouldn't have had to carry

stuff out to the car yourself. They should not have called you to come and

get him. They have made many errors not the least of which is lack of good

care. There should be an Omsbudman whom you can call and report all the

deficiencies, med changes, lack of courtesy with Don's things, lack of

care--all of it. Call the nursing home and ask them for the Omsbudsman's

number. Perhaps they do not call them Ombudsmen but it is someone not

connected with the NH who can take reports about the nursing home and let

the state know. Then when you get done with that call the Doctor who sent

him there and tell him about the treatment Don got and the meds problems.

I know you must be exhausted and worried. We are all with you 100% with love

and support. Keep your chin up and do the best you can to take care of you.

Love, Leona

Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing

Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have

ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in

Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14,

2009. I am handling it OK.

'Love is not finding someone to live with; it's finding someone you don't

want to live without.'

[Guest guest]

Lorraine, your writing at all is a loving gesture, especially when you

don't know what to say. That in itself makes me feel your love. I appreciate

it no end.

Love so much,

Imogene

In a message dated 2/1/2010 8:33:42 A.M. Central Standard Time,

lbellomy51@... writes:

Imogene, I have started to send you a note a couple of times but each time

I just cannot find words to express how I feel. I just hope that your

caregiver help can stay with you as long as you need her. It is times like

these that I think many of us would like to clone ourselves and come give a

helping hand. Be careful.

Lorraine

[Guest guest]

Hi Sandie, there is a nursing home a few blocks from me. But, it isn't

bright and cheerful, and is very crowded around the nurses station. They do

have a nice dining room. I wasn't impressed with the place nor the attitude

of the nurse, administrator, or front desk person, who ever she was. We had

gone past the locked doors when someone left and she demanded, " What are you

doing in here? " I was taken aback. She wasn't eager to show us the unit,

and only showed us the dining hall. Then, she walked us back up front, and

wanted to know about us. Her general attitude didn't bode well with me. We

also remembered Don's mother was there for a short time, and her legs became

black and blue, and it wasn't from falls. Papaw moved her to a different

place.

I am having a difficult time because of Don's past violence. Remember, I

called every NH in this city some time back? They wanted to know where he

was before, and turned him down. So it looks as if I am it as long as I can

stand it. And, what happens then is anyone's guess.

Love a bunch,

Imogene

In a message dated 2/1/2010 4:43:55 P.M. Central Standard Time,

sanclown@... writes:

Dear Imogene-

My oh my! My heart goes out to you and prayers are going up for strength

for your days ahead.

Isn't there a NH with a dementia unit near you that would be able to care

for Don? We have a facility in Des Moines that is 3 floors, a large

facility, that is nothing but dementia residents. There is a waiting list to

get

in there. I had put my dad on the list and remember getting a call

shortly after he passed away.

I am worried about your health. I have sent up prayers for you and for

Don and will continue to do so.

Positive thoughts with hugs and prayers-

Sandie

Des Moines, IA where it's snowing once again!

[Guest guest]

Imogene - you hang in there!  You are a special lady to care so much for your

Don.  I know it can be tough being a caregiver and make sure you take care of

yourself.  I'm glad your daughter is able to help get things from the store for

you.  Keep your chin up and rest when you can!  Will be praying for you and

Don!

Alisa

DIL to Butch, 74, LBD 3 years, PD 13 years.

________________________________

To: LBDcaregivers

Sent: Mon, February 1, 2010 4:42:51 PM

Subject: Re: Imogene

 

Dear Imogene-

My oh my! My heart goes out to you and prayers are going up for strength for

your days ahead.

Isn't there a NH with a dementia unit near you that would be able to care for

Don? We have a facility in Des Moines that is 3 floors, a large facility, that

is nothing but dementia residents. There is a waiting list to get in there. I

had put my dad on the list and remember getting a call shortly after he passed

away.

I am worried about your health. I have sent up prayers for you and for Don and

will continue to do so.

Positive thoughts with hugs and prayers-

Sandie

Des Moines, IA where it's snowing once again!

----- Re: Re: Introduction/ OT

Date: Sun, 31 Jan 2010 18:25:15 EST

Joan, my dear friend, I am so tired I can hardly write. I had a toss and

turn night, and finally got up at five-thirty. Had coffee and breakfast,

looked at the want ads

some ( you know, I want this I want that, that comes out in Circulars?) At

a few minutes after seven, the NH called.

" Your husband was up all night. " All night? " " Yes, all night. " He was

wandering all night. We redirected him several times away from the doors. "

" Come morning, we put him at the breakfast table to wait for breakfast. In

the mean time the staff was changing diapers and preparing residents to

have breakfast. "

" We heard the alarm go off, and nurses ran in every direction to find who

tripped the alarm. They found your husband in the vacant lot next door that

has construction going on. He was on his hands and knees, as he had fallen.

He only had street clothes on and a sheet wrapped around his shoulders. "

(It was Thirty degrees this morning.)

" Will you please come and get him? We don't have the faclitity to care for

someone that wanders "

So, I ran up to the nursing home as fast as I could. He was having

breakfast. I packed his clothes and hauled them to the car. (My back is killing

me.) A fire truck and two ambulances came and I had to move my car. It was so

cold and I had left my coat inside. How did Don stand it?

The nurse filled out the paper work, and talked to me for a while. She was

a doll. I know why Don loved her. She was most concerned for me. I ran to

the nursing home with my jeans and no makeup. I looked like death warmed

over. She asked if I was alright?

I got him home and called my daughter and caregiver. I put his shoes back

on no less than four times in the first few hours he was home. So? Bending

over hurts so bad I can hardly handle it, even when sitting, that's why I

told it.

, my daughter, went shopping for me and when she came I felt like

crying, but held it in check the best I could.

He was so edgy all day that I couldn't get him to nap. He was sure I was

going to leave him. I had dozens of little things to do to make things right

after bringing him home. I fed him and put my medicine in the weekly

planner, and finally put some of his things away. Right now I have a ham in the

oven. I am sure glad I have it.

So there you have the trials and tribulations of caregiving. Who is going

to care for me? Don asked me today who was oldest, me or him? I told him I

was two years older than him, and yet I was his caregiver. He wanted to know

why we couldn't buy our own nursing home?

And on that note I'll sign off.

Love a lot,

Imogene

In a message dated 1/30/2010 8:20:37 P.M. Central Standard Time,

joan_crofthotmail (DOT) com writes:

Imogene,

I believe that you could make tons of money just writing articles...or

maybe a book...about your life. You write so well and spell the whole scene

out as if I were there with you as you were hanging the frozen laundry.

I hope that you are feeling better each day, and pray that Don will

continue to do well in the current NH.

Take care, and God bless

Joan

[Guest guest]

Thank you Leona, Yes, I am too tired to fight with it. I may perk up

later, but right now I will have to put calling anyone on the back burner. I

just don't think Don is NH material. Well, I don't know what to think. After he

had such a close call the other day, I don't want him out of my sight

anymore. I can't seem to be able to trust anyone to care for him properly.

Love you Leona,

Imogene

In a message dated 2/1/2010 11:51:07 P.M. Central Standard Time,

lchere@... writes:

Imogene: What a terrible turn things have taken for you and Don. That is

disgraceful the way that NH treated you. You shouldn't have had to carry

stuff out to the car yourself. They should not have called you to come and

get him. They have made many errors not the least of which is lack of good

care. There should be an Omsbudman whom you can call and report all the

deficiencies, med changes, lack of courtesy with Don's things, lack of

care--all of it. Call the nursing home and ask them for the Omsbudsman's

number. Perhaps they do not call them Ombudsmen but it is someone not

connected with the NH who can take reports about the nursing home and let

the state know. Then when you get done with that call the Doctor who sent

him there and tell him about the treatment Don got and the meds problems.

I know you must be exhausted and worried. We are all with you 100% with

love

and support. Keep your chin up and do the best you can to take care of you.

Love, Leona

Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual

downhill

slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing

Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have

ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in

Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14,

2009. I am handling it OK.

'Love is not finding someone to live with; it's finding someone you don't

want to live without.'

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

Welcome to LBDcaregivers.

Yahoo! Groups Links

[Guest guest]

Thank you dear Alisa, I am going to bed in a few minutes. I am tired, and

am still trying to balance Don's bowel. Maybe tomorrow will be the day that

all will be better.

Love so much,

Imogene

In a message dated 2/2/2010 10:38:47 A.M. Central Standard Time,

randalisa@... writes:

Imogene - you hang in there! You are a special lady to care so much for

your Don. I know it can be tough being a caregiver and make sure you take

care of yourself. I'm glad your daughter is able to help get things from

the store for you. Keep your chin up and rest when you can! Will be

praying for you and Don!

Alisa

DIL to Butch, 74, LBD 3 years, PD 13 years.

[Guest guest]

Thank you Sandie, I need all the help I can get, and prayers are an

excellent source.

That is odd that they told you to take your Dad, and then call it an

involuntary discharge. I've never heard that before.

I have become so disgusted with the care Don has gotten that I am ready to

care for him myself until he becomes bedridden. Or, I have surgery.

I used a suppository, for Don's bowel, but it didn't do a thing. So, many

hours later, at bedtime, I gave him a laxative. He slept like a baby, and I

was so sure the laxative would work that I didn't sleep three hours last

night. You could have peeled me from the ceiling. At four AM I got up and

had breakfast. He finally had excellent results this morning. Oh, what we go

through for our LOs.

He hasn't wet the bed, nor his clothes since he came home. I am pretty

well staying on top of his needs. Yet, I do find time to relax, like right

now. Just last night, forget relaxing! )

Don's scaled is healing up very nicely. Another day should do it.

Love so much,

Imogene

In a message dated 2/3/2010 7:30:44 A.M. Central Standard Time,

sanclown@... writes:

Hi Imogene-

There still has to be another answer for Don. My dad had violent

behaviors the last 2 1/2 years of his life. I know it was the hallucinations

he

had but he couldn't tell me about them. The NH he lived at would sent him to

an adult psychiatric unit from time to time to " fix his meds " and I would

try to follow what meds he was on. All of this happened before I signed

into this group and was alone in caregiving. I signed into the group January

2002 and it was then I found Ativan to be a bad drug for LBDers. My dad

was transferred, for the last time, Sept. 4 of 2002 but the NH didn't order

any wheelchair transportation so I was forced to put my dad in my truck and

was told my dad would be coming back to the NH. The next morning I

received, by mail, an " involuntary discharge " letter. My dad stayed at the

psych

unit until Sept. 17 and was transferred to another NH about 45 minutes

away, he passed away Sept. 20.

LBD is a terrible disease for both the patient and the caregiver. My

heart goes out to you and all those who have had LBD in their lives. Prayers

will continue to go up for you and Don.

Big hugs-

Sandie

Des Moines, IA

[Guest guest]

Hi Imogene-

There still has to be another answer for Don. My dad had violent behaviors the

last 2 1/2 years of his life. I know it was the hallucinations he had but he

couldn't tell me about them. The NH he lived at would sent him to an adult

psychiatric unit from time to time to " fix his meds " and I would try to follow

what meds he was on. All of this happened before I signed into this group and

was alone in caregiving. I signed into the group January 2002 and it was then I

found Ativan to be a bad drug for LBDers. My dad was transferred, for the last

time, Sept. 4 of 2002 but the NH didn't order any wheelchair transportation so I

was forced to put my dad in my truck and was told my dad would be coming back to

the NH. The next morning I received, by mail, an " involuntary discharge "

letter. My dad stayed at the psych unit until Sept. 17 and was transferred to

another NH about 45 minutes away, he passed away Sept. 20.

LBD is a terrible disease for both the patient and the caregiver. My heart goes

out to you and all those who have had LBD in their lives. Prayers will continue

to go up for you and Don.

Big hugs-

Sandie

Des Moines, IA

----- Re: Imogene

Date: Tue, 2 Feb 2010 15:57:02 EST

Hi Sandie, there is a nursing home a few blocks from me. But, it isn't

bright and cheerful, and is very crowded around the nurses station. They do

have a nice dining room. I wasn't impressed with the place nor the attitude

of the nurse, administrator, or front desk person, who ever she was. We had

gone past the locked doors when someone left and she demanded, " What are you

doing in here? " I was taken aback. She wasn't eager to show us the unit,

and only showed us the dining hall. Then, she walked us back up front, and

wanted to know about us. Her general attitude didn't bode well with me. We

also remembered Don's mother was there for a short time, and her legs became

black and blue, and it wasn't from falls. Papaw moved her to a different

place.

I am having a difficult time because of Don's past violence. Remember, I

called every NH in this city some time back? They wanted to know where he

was before, and turned him down. So it looks as if I am it as long as I can

stand it. And, what happens then is anyone's guess.

Love a bunch,

Imogene

In a message dated 2/1/2010 4:43:55 P.M. Central Standard Time,

sanclown@... writes:

Dear Imogene-

My oh my! My heart goes out to you and prayers are going up for strength

for your days ahead.

Isn't there a NH with a dementia unit near you that would be able to care

for Don? We have a facility in Des Moines that is 3 floors, a large

facility, that is nothing but dementia residents. There is a waiting list to

get

in there. I had put my dad on the list and remember getting a call

shortly after he passed away.

I am worried about your health. I have sent up prayers for you and for

Don and will continue to do so.

Positive thoughts with hugs and prayers-

Sandie

Des Moines, IA where it's snowing once again!

[Guest guest]

Imogene, I just want you to know that I am thinking about you and hoping you are

taking care of yourself as well as you are taking care of Don. There's a

tremendous amount of work that you're doing. I wish you both well--with very

special moments--but also hope that you can get respite somehow. Warmly, Norma

[Guest guest]

Thank you Norma, I need to be doing my back exercises, but haven't yet

today. Will get out the pads and do them on the LR floor when Don is watching

TV.

It is difficult to find relaxing time, exercise time, laundry time and

putting on his shoes all day. Not to count keeping up with his medicines and

mine. And get two meals a day. Our caregiver gets the main meal for all three

of us. I helped with it today.

I'm still trying to get Don healed from becoming so raw. I talked with the

NH Administrator today, and told her a few more things that happened. I

let her know I don't want to be complaining, but that she needs to know why a

situation happened. Don was left wet, made to sit in the wheel chair, He

was not cleaned properly, as I even had to show the CNA how to clean him

after a bowel movement.

I don't know that he ever got a bath. I don't know.

But, I do know that he was not given his Seroquel on the night he was up

all night. I said I know the help will tell her anything, but I know how

Seroquel works on my husband and he would not have been up all night, and then

gone out the door in the cold. I said his getting constipated and getting

raw should not have ever happened.

She was glad I talked to her, and she asked me if I was ever told that it

was not a lock down facility. I told her NO, that the hospital sent him

there, with my approval, but all I knew is that it was a new place.

Don thinks the Lord wants him to stay home. Don wants him to stay home.

I am still trying to shred boxes and boxes of accumulated papers that we

no longer need, and never got around to cleaning up. I did put away a large

pile of blankets, etc. after putting them in plastic bags.

Yes, I do a lot, and hurt all the time. That too is going to be cared for.

Thanks Norma, you are a very special person

Love a lot,

Imogene

In a message dated 2/4/2010 12:15:08 P.M. Central Standard Time,

Normal@... writes:

Imogene, I just want you to know that I am thinking about you and hoping

you are taking care of yourself as well as you are taking care of Don.

There's a tremendous amount of work that you're doing. I wish you both

well--with very special moments--but also hope that you can get respite

somehow.

Warmly, Norma

[Guest guest]

Hi dear Sherry, I am so glad you are still with this group. You offer so

much knowledge and comfort. For that I thank you, and for being a support

for me.

Sherry, was your Don still mobile when he got Hospice? Does one have to

pay 20% with Medicare when using Hospice?

We have a Medicaid program where-by we keep our SS every month, but have

in home care or NH care. For this I pay nothing. We are more blessed that

anyone can imagine, because Medicaid pays minimum wages, and I have a girl

worth three times that much. I slip her a little extra every week. I put it in

her pocket when she isn't looking. It's a kind of game we play, with money

never exchanging hands. That's close to the edge isn't it?

My Don is still mobile. Well, kinda sorta. He fell twice yesterday. He was

going to sit and missed his chair. Well, the second fall was when I tried

to help him up, and he was out of my hands before I could do anything about

it. Yet, I am not going to try to force him into a wheel chair all day. Not

yet, anyway. He likes walking.

Since he has been home he wants to go to bed at 6PM. It was 7:30 when he

asked to go to bed, tonight. He slept in until 8 AM. And, napped during the

day. I hope he isn't sick. He has been through a lot of stress, but tomorrow

I will check him out carefully to see if his pneumonia is still cured.

I folded and put away a load of laundry, and did my exercising. And, here

I am enjoy me! : )) ( )

Another thing of said was, " I'm so glad you got to see me. "

: ))

Love a lot,

Imogene

In a message dated 2/4/2010 4:04:43 P.M. Central Standard Time,

salozier@... writes:

Hello Imogene,

When I read what you are going through I get tired just reading it. I can

only imagine how you must be! I am so glad you have a wonderful caregiver

to help you. That was my saving grace the last five weeks my Don was

alive. Having Hospice come in and bath him made all the difference so I know

that really helps you. And to have dinner made too, well that is the best

because you are getting some pampering too. You deserve lots of pampering

too and I wish you could get more of it!

Sending you good thoughts, prayers and lots of love, Dear Lady!

Sherry in Colorado

PS: I just thought of this. Don's doctor here in Colorado said we could

have Hospice even if it was for a year or two. He would just renew it as

Don was showing signs of being close to the end. And if my Don got better,

we could take him off hospice and return to it later. Your Don sounds very

much like where my Don was or close to it. Medicare pays for all of

hospice! Could you doctor do the same and you could have hospice care in the

home?

>

> Lorraine, your writing at all is a loving gesture, especially when you

> don't know what to say. That in itself makes me feel your love. I

appreciate

> it no end.

>

> Love so much,

> Imogene

>

>

[Guest guest]

Dear Sandie, I point blank asked if Don was an involuntary discharge? The

administrator said " No. " I asked if he became immobile if they would accept

him back? I don't want him there, but I wanted to know what her attitude

was. She remained very nice through our conversations. I've talked with her

twice.

Sandie, having to handle what you did was awful when you hadn't had

anything to eat all day. You must have been weak as a kitten. Yet, you had to do

everything. Isn't that the way it is? For them to pull that underhanded

trick on you was not very nice to say the least. I'll beat your NH up for you

if you'll come and beat my NH up.

Ugly Imogene. Sandie, I am obviously in a tired silly mood. Laugh with

me. If we don't, we cry.

Love you dear,

Imogene

In a message dated 2/4/2010 5:13:31 P.M. Central Standard Time,

sanclown@... writes:

Hi Imogene-

What happened with my dad was they wanted to transfer him to the adult

psychiatric unit but couldn't do the transfer without my permission. I was in

the middle of hypoglycemic testing. The NH kept calling me and I couldn't

leave the doctor's office. The NH kept telling me they had ordered a

wheelchair transportation service. I called to tell them I was on my way,

after the testing...hadn't had anything to eat all day because I was to fast

for the testing. I was stuck in traffic, the NH called a couple times while

in traffic. When I got to the NH I was then told they had NOT ordered a

wheelchair transportation service but my dad needed to be transferred to the

adult psych unit. It was then I put my dad in my truck. There were 2 of

the staff there with me but I did all the work. After I shut dad's side

door something made me ask if my dad was coming back to the NH and the 2 staff

people said... " oh yes! " Told me not to worry, dad would be back. The

obviously lied to m

e. The next day was when the letter came to my house stating an

" involuntary discharge " .

I completely understand your disgust with care Don has received. I felt

the same with my dad but didn't have the option to have my dad at my house.

I am so pleased Don had results. Your diligence paid off. Great job!!

So very glad you are finding some time to relax. Sounds like your

caregiver is a real gem and a keeper. Happy she is doing cleaning and some

cooking. That is definitely a big help.

Continue to take care of yourself as you care for Don!

Many hugs with prayers going up-

Sandie

[Guest guest]

Hello Imogene,

When I read what you are going through I get tired just reading it. I can only

imagine how you must be! I am so glad you have a wonderful caregiver to help

you. That was my saving grace the last five weeks my Don was alive. Having

Hospice come in and bath him made all the difference so I know that really helps

you. And to have dinner made too, well that is the best because you are getting

some pampering too. You deserve lots of pampering too and I wish you could get

more of it!

Sending you good thoughts, prayers and lots of love, Dear Lady!

Sherry in Colorado

PS: I just thought of this. Don's doctor here in Colorado said we could have

Hospice even if it was for a year or two. He would just renew it as Don was

showing signs of being close to the end. And if my Don got better, we could

take him off hospice and return to it later. Your Don sounds very much like

where my Don was or close to it. Medicare pays for all of hospice! Could you

doctor do the same and you could have hospice care in the home?

>

> Lorraine, your writing at all is a loving gesture, especially when you

> don't know what to say. That in itself makes me feel your love. I appreciate

> it no end.

>

> Love so much,

> Imogene

>

>

> In a message dated 2/1/2010 8:33:42 A.M. Central Standard Time,

> lbellomy51@... writes:

>

> Imogene, I have started to send you a note a couple of times but each time

> I just cannot find words to express how I feel. I just hope that your

> caregiver help can stay with you as long as you need her. It is times like

> these that I think many of us would like to clone ourselves and come give a

> helping hand. Be careful.

> Lorraine

>

>

>

>

[Guest guest]

Hi Imogene-

What happened with my dad was they wanted to transfer him to the adult

psychiatric unit but couldn't do the transfer without my permission. I was in

the middle of hypoglycemic testing. The NH kept calling me and I couldn't leave

the doctor's office. The NH kept telling me they had ordered a wheelchair

transportation service. I called to tell them I was on my way, after the

testing...hadn't had anything to eat all day because I was to fast for the

testing. I was stuck in traffic, the NH called a couple times while in traffic.

When I got to the NH I was then told they had NOT ordered a wheelchair

transportation service but my dad needed to be transferred to the adult psych

unit. It was then I put my dad in my truck. There were 2 of the staff there

with me but I did all the work. After I shut dad's side door something made me

ask if my dad was coming back to the NH and the 2 staff people said... " oh yes! "

Told me not to worry, dad would be back. The obviously lied to me. The next

day was when the letter came to my house stating an " involuntary discharge " .

I completely understand your disgust with care Don has received. I felt the

same with my dad but didn't have the option to have my dad at my house.

I am so pleased Don had results. Your diligence paid off. Great job!!

So very glad you are finding some time to relax. Sounds like your caregiver is

a real gem and a keeper. Happy she is doing cleaning and some cooking. That is

definitely a big help.

Continue to take care of yourself as you care for Don!

Many hugs with prayers going up-

Sandie

----- Re: Imogene

Date: Wed, 3 Feb 2010 11:14:40 EST

Thank you Sandie, I need all the help I can get, and prayers are an

excellent source.

That is odd that they told you to take your Dad, and then call it an

involuntary discharge. I've never heard that before.

I have become so disgusted with the care Don has gotten that I am ready to

care for him myself until he becomes bedridden. Or, I have surgery.

I used a suppository, for Don's bowel, but it didn't do a thing. So, many

hours later, at bedtime, I gave him a laxative. He slept like a baby, and I

was so sure the laxative would work that I didn't sleep three hours last

night. You could have peeled me from the ceiling. At four AM I got up and

had breakfast. He finally had excellent results this morning. Oh, what we go

through for our LOs.

He hasn't wet the bed, nor his clothes since he came home. I am pretty

well staying on top of his needs. Yet, I do find time to relax, like right

now. Just last night, forget relaxing! )

Don's scaled is healing up very nicely. Another day should do it.

Love so much,

Imogene

In a message dated 2/3/2010 7:30:44 A.M. Central Standard Time,

sanclown@... writes:

Hi Imogene-

There still has to be another answer for Don. My dad had violent

behaviors the last 2 1/2 years of his life. I know it was the hallucinations

he

had but he couldn't tell me about them. The NH he lived at would sent him to

an adult psychiatric unit from time to time to " fix his meds " and I would

try to follow what meds he was on. All of this happened before I signed

into this group and was alone in caregiving. I signed into the group January

2002 and it was then I found Ativan to be a bad drug for LBDers. My dad

was transferred, for the last time, Sept. 4 of 2002 but the NH didn't order

any wheelchair transportation so I was forced to put my dad in my truck and

was told my dad would be coming back to the NH. The next morning I

received, by mail, an " involuntary discharge " letter. My dad stayed at the

psych

unit until Sept. 17 and was transferred to another NH about 45 minutes

away, he passed away Sept. 20.

LBD is a terrible disease for both the patient and the caregiver. My

heart goes out to you and all those who have had LBD in their lives. Prayers

will continue to go up for you and Don.

Big hugs-

Sandie

Des Moines, IA

[Guest guest]

Hello Imogene,

When you go on Hospice, Medicare pays everything. All meds that are plaltive

(sp) care (to keep them comfortable). But I requested keeping Don on the

Aricept and some other meds and used the information on the study I found on

this site about those meds working for a longer time with LBD vs Alzh. The

nerological dr with my hospice group knew about LBD and agreed to do that, so

those meds were also payed for my medicare.

My Don was still mobile when they started coming but as with you he had fallen

some and I was in the habit of following him around and holding onto his waist

to ensure he didn't fall. Well the hospice team immediately stated working with

Don to use the walker and also had me use the belt they gave me for

around his waist. It give the caregiver more control and also keeps the

caregiver from getting hurt it the LO starts to go down. It really helped me to

get Don off the pot LOL. He would start to get up and I would be pulling with

the belt and up he would coming!

> >

> > Lorraine, your writing at all is a loving gesture, especially when you

> > don't know what to say. That in itself makes me feel your love. I

> appreciate

> > it no end.

> >

> > Love so much,

> > Imogene

> >

> >

>

>

>

>

[Guest guest]

Sorry Imogene

My computer stopped working while I was writing to you.

The belt they gave me for around his waist gave me better control if he started

to fall. Also I was able to get him up off the pot a lot easier with that belt.

I also ordered that new book for them that was written by the man and his new

wife who is a nurse. It was writen for the professionals. Can't remember the

name but got the info from this site. I will try and remember it and let you

know. The hospice team was very grateful for the information. The worked with

me on the meds and listens to what I said and kept Don on the seroquile (sp) and

also let me adjust the amounts depending on how he did during the day. You can

pick which hospice to come into your home at least here in Colorado you can. I

found one that also had a care facility for when I needed a few respite days and

it turned out that Don went there when he went down so fast and died there.

Really really nice place and people. So check out the various hospice in your

area. That also was paid in full by medicare!

Also here in Colorado and Also in Alaska, when a LO goes down on the floor and

you can not get them up, we have a special number to call for help from the fire

department (NOT 911) and they will come out and help get them up and into the

bed and not charge you for it. So check about that too. Don went down on the

floor the night before he entered the Hospice Care Facility and it took me 30

min. to get him into a wheel chair and into the bed. I did not know at that

time about who to call to help me. The next day he was completelly unable to

talk or get up and we had hospice come out and they took him to the Care

Facility supposelly for only about 3 days but he got worse and died 5 days

later. I really think he had some strokes to tell you the truth. Looking back

and thinking about how he was that is the only thing that makes sense to me.

Hope this helps you get some help. If I thing of anything else I will write.

Take care

Sherry in Colorado

> > >

> > > Lorraine, your writing at all is a loving gesture, especially when you

> > > don't know what to say. That in itself makes me feel your love. I

> > appreciate

> > > it no end.

> > >

> > > Love so much,

> > > Imogene

> > >

> > >

> >

> >

> >

> >

[Guest guest]

Imogene,

the book was " Riding the Rollercoaster with Lewy Body Dementia by Jim and Helen

Whitworth. You can go to there site or the LBD site and look at the refer. for

professtional and then at the books. It is really a good book that is no

nonsense and right to the point about all aspects of LBD, the dos and don't.

And since it is written for " professionals " I think they are a little more able

to accept the new information than maybe from us LOL. But I have to say that

the hospice team I had were great at listening to me and also the Doctor that

Don had here in Colorado was great. I know I was very lucky to have had such a

great team and I truly hope you can get that type of support too. Sorry for the

long letter but wanted you to have the info.

Sherry in Colorado

> > > >

> > > > Lorraine, your writing at all is a loving gesture, especially when you

> > > > don't know what to say. That in itself makes me feel your love. I

> > > appreciate

> > > > it no end.

> > > >

> > > > Love so much,

> > > > Imogene

> > > >

> > > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi Sherry,

Thank you for this excellent advise. Do I go to Hospice, do I call them,

or does the doctor do it? I don't know where or how to get it started.

I would want my Don on all his medications. He is on Aricept and Seroquel,

along with a bunch of heart medications. Will Hospice allow all that? Or

do I do it in spite of them?

I would like for them to keep tabs on him, and help with bathing, if they

do that.

Do they come on week-ends?

I help my Don too. We have a belt with Velcro which I have used. It is

really a back support belt, which I turned around. I would like a good belt.

I grab Don's pants a lot, too. He has no trouble getting off the toilet as

we have a grab bar, and I hold his other hand and pull on the back of his

bent arm. If I used a belt in that situation my back would be screaming.

On a regular chair I hold both hands and help him pull up. I am careful to

keep my back straight so as not to injure it any further.

Being tall has one advantage when trying to help him up. Our caregiver is

short and doesn't do so well with leverage and pull.

We have a walker, in fact we have two. One has two wheels on the front and

plain legs on the back. The other one has four wheels and a seat. The

walker with two wheels would be safer for him I should think.

Thanks for talking about Hospice. I never know when it's time. Right now I

still feel it is a bit early to call them in. Yet, you said your Don was

walking, and you were following holding on. I do the same thing. Sometimes

he walks by himself. He also feeds himself. I cut it all up for him.

Love a lot, with a big thanks,

Imogene

In a message dated 2/5/2010 2:29:52 P.M. Central Standard Time,

salozier@... writes:

Hello Imogene,

When you go on Hospice, Medicare pays everything. All meds that are

plaltive (sp) care (to keep them comfortable). But I requested keeping Don on

the Aricept and some other meds and used the information on the study I found

on this site about those meds working for a longer time with LBD vs Alzh.

The nerological dr with my hospice group knew about LBD and agreed to do

that, so those meds were also payed for my medicare.

My Don was still mobile when they started coming but as with you he had

fallen some and I was in the habit of following him around and holding onto

his waist to ensure he didn't fall. Well the hospice team immediately

stated working with Don to use the walker and also had me use the belt they

gave

me for

around his waist. It give the caregiver more control and also keeps the

caregiver from getting hurt it the LO starts to go down. It really helped

me to get Don off the pot LOL. He would start to get up and I would be

pulling with the belt and up he would coming!

> >

> > Lorraine, your writing at all is a loving gesture, especially when

you

> > don't know what to say. That in itself makes me feel your love. I

> appreciate

> > it no end.

> >

> > Love so much,

> > Imogene

> >

> >

>

>

>

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

>

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

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