Donna

[Guest guest]

Donna <<hugs>>

I hope you'll find the strength to get through this!

Love,

From: mido101@...

Reply-To: LBDcaregivers

Date: Mon, 16 Sep 2002 10:45:31 -0400 (EDT)

To: LBDcaregivers

Subject: Re: Re: What are they thinking?

Sandie and ,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

feels like they are on my side.

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

hard on you and your Dad.

Good luck

Donna

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

Association site at:

http://www.lewybodydisease.org

[Guest guest]

Donna <<hugs>>

I hope you'll find the strength to get through this!

Love,

From: mido101@...

Reply-To: LBDcaregivers

Date: Mon, 16 Sep 2002 10:45:31 -0400 (EDT)

To: LBDcaregivers

Subject: Re: Re: What are they thinking?

Sandie and ,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

feels like they are on my side.

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

hard on you and your Dad.

Good luck

Donna

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

Association site at:

http://www.lewybodydisease.org

[Guest guest]

Sally,

You are so far ahead of me. As I have read your posts, I know you too,

have been " through it. " And you are right about most of what you post.

The anger, frustration, the sadness. And when I hear you and others

talk of your situations, I wonder how you do it? And wonder what I am

talking about. I did do all I could and like some others here, I do

feel I didn't " do " enough. But this disease is something else. And we

have all been robbed of time. Including those parents who had the

disease. They deserved better.

Just having a bad week end.

Donna

[Guest guest]

Donna

I said a prayer for the 5 of us who has lost our loved ones to LBD. I

prayed that we continue to see the beauty in life and the happiness that

goes beyond the heartaches we feel. I feel so very fortunate to have

made so many friends in this group, and to have to opportunities to talk

with people I never would have met had I not been a member here. Life

has so many gifts daily and I just pray that all of us are able to heal

and go forward.

My former day job called me today and asked if I would consider going to

work there again. I agreed, so will start there maybe next Monday for 2

or 3 days a week. I have found I have so much time on my hands, and

there is a lot of thought in silence. The people I worked for were

wonderful, and the company DuPont/Pioneer where Aramark is in is

friendly as well.

Take special care of yourself. Take atleast 30 minutes out for yourself

today and soon that 30 minutes will be more than you will know what to

do with. Plan coffee with a friend and before you know it your

struggles and pains will work themselves out. Blessings to all!!

Sandie

Des Moines, IA

[Guest guest]

Donna

Your story of your mom saying she had walked across the street and spent

the night in a trailer reminded me of a time my dad had told me one of

the nurses we had coming into his apartment had pulled one of his teeth.

Strange how at the time, I wasn't quite aware of the severity of

hallucinations. Well, I called, and called, and called some more to

everyone I thought may have done this. Truly, to this day, I am not

quite sure it didn't happen. What I am trying to say to those

struggling with the daily hallucinations...I found they are VERY real in

the mind of LBD. In relation, it would be as if someone would convince

me I don't belong to this caregivers group, and I did not just type a

message. Just the same, as if all who has read this...just think if

someone tries with all their might, arguing and all, to convince you

that you did not JUST read this. I never talked my dad out of his

sightings (hallucinations), and probably more times than not, put myself

through a sort of humiliation to help him through them. Be care with

your loved ones, life with LBD is probably just as confusing and scary

to them on the inside, as it is to us on the outside.

God Bless you all, and I pray daily for your strength to endure.

Sandie

[Guest guest]

Donna

My heart is with you as you struggle through your unanswered questions.

I wasn't at my dads bedside either when he passed away. I am thankful

that someone we knew was there and could give me answers to my questions

of " Did he suffer, did he have labored breathing, was it peaceful? " I

had the same issues with the NH dad lived at before going to the

hospital...they wouldn't call when dad had the flu and I walked in

finding him lying naked in his own waste, they didn't call when he

hadn't eaten for 2 days and I had not made it down there until the 3rd

day. The list goes on an on. I had not thought about those situations

until reading your post. I guess for me I have forgiven the staff at

the NH yet of course I haven't completely forgotten it. I am thankful

my dad regained all of the dignity and respect during his hospital stay

and when he was transferred to the last NH for four days. He had more

respect in those 2 1/2 weeks than he had in the 2 1/2 yrs at the NH in

Carlisle.

What questions do you have? Why is your heart so unsettled? I want to

help. The grieving process is so detailed, and individual to all, yet

maybe I can help you through it. You can email me personally as well.

It hurts me to know you are hurting and feel you have not had closure.

Please ask me anything.

Keeping you close in my heart, and in my prayers your name is always

sent up.

Many hugs to you Donna!!

Love

Sandie

Des Moines, IA

[Guest guest]

Sandie,

I just keep writing and erasing emails. Mom had no support or respect

from the nh or Hospice.

Hospice said they would support ME through this, and they didn't.

And I haven't even started on the nh yet! And there are still people in

that nh going through exactly what Mom and I went through..

And patients with dementia in the nh have LO's who don't know what to do

either.

And maybe my anger is suppose to motive me in some way to do some kind

of work that will help this situation in a broader sense.

I haven't figured it out, but I will.

Donna

[Guest guest]

Sandie,

I just keep writing and erasing emails. Mom had no support or respect

from the nh or Hospice.

Hospice said they would support ME through this, and they didn't.

And I haven't even started on the nh yet! And there are still people in

that nh going through exactly what Mom and I went through..

And patients with dementia in the nh have LO's who don't know what to do

either.

And maybe my anger is suppose to motive me in some way to do some kind

of work that will help this situation in a broader sense.

I haven't figured it out, but I will.

Donna

[Guest guest]

Donna

A note of reassurance, anger is part of the grieving process. Don't

rush yourself. Maybe though, as you mentioned, maybe this is your

calling. I think you could use the energy it takes to be angry and

transpose it to something positive. The experience you had with your

mom over the years could be the tool needed to help others. I am so

happy that you are feeling, whether it is anger, sadness, or

acceptance...atleast you are in tune to your emotions. If you were

indifferent, nothing mattered either way, I would be worried.

Please let me know if I can help. I had many of the NH issues that you

had with your mom. I had no one to bounce them off of except this

group. Maybe I can help support you through the grieving process.

Thank you so much for keeping in touch and sharing your emotions here.

My prayers are with you!!

Sandie

[Guest guest]

Donna

A note of reassurance, anger is part of the grieving process. Don't

rush yourself. Maybe though, as you mentioned, maybe this is your

calling. I think you could use the energy it takes to be angry and

transpose it to something positive. The experience you had with your

mom over the years could be the tool needed to help others. I am so

happy that you are feeling, whether it is anger, sadness, or

acceptance...atleast you are in tune to your emotions. If you were

indifferent, nothing mattered either way, I would be worried.

Please let me know if I can help. I had many of the NH issues that you

had with your mom. I had no one to bounce them off of except this

group. Maybe I can help support you through the grieving process.

Thank you so much for keeping in touch and sharing your emotions here.

My prayers are with you!!

Sandie

[Guest guest]

Donna, I remember when my dad died. I wasn't there either. He didn't die of

LBD. He was only 62 going on 63, but he had heart trouble. He had had bypass

surgery in 1982. He died in 1987. He went to the doctors that morning and the

doctor drove him to the hospital. He was in the hospital all day waiting for

the procedure (defibulator paddles). He was hungry around dinner and hadn't

eaten all day. My mom asked if he could have a sandwich and the nurse said

sure. Then they were told that they couldn't perform the procedure because my

father had eaten. Typical eh? Finally, at 10 pm my mom and my brother left the

hospital sure that they were not going to perform the procedure that day.

Around 11pm we got a phone call saying that they had completed the procedure and

dad was okay. Then 5 min. later they called back and said you better come, we

don't think he will make it. I rushed mom over to the hospital and I swear I

thought she was going to have a heart attack running to the ICU. Unfortunately

they were working on him when we arrived and they ushered us out to the waiting

room. I was told that they did the procedure which righted his heartbeat (which

was racing at 150 beats a minute and not working effectively as a pump.) It

began to speed up again and the next time they shocked it, it stopped and they

could not get it to start up again.

The next time I saw my dad he was dead.

I felt terrible for years for not being there when he died, not going to the

hospital during that day etc. My dad had had problems before and he hated it

when everybody stood around. He would have wanted me to stay home and look

after my boys then 3 and 1 and a half. I felt so selfish and ashamed though,

that I had not gone. Then I talked to our minister and he asked me what I would

have done if I had been there when he died. I said " I would have told him I

loved him " and he said " Don't you think he knew that? " I now can accept that

this was for the best as he would have chosen for me not to have been there, as

he would have tried desperately to spare me the grief. My mother and I saw him

right after he died. I promised to take care of mom. I have done the best that

I can do up until now to take care of her and I will do my best to continue this

as promised.

I hope you will find peace. I am sure your father knew that you loved him and

the bond you shared will continue forever.

Kath

Re: Donna

Donna

My heart is with you as you struggle through your unanswered questions.

I wasn't at my dads bedside either when he passed away. I am thankful

that someone we knew was there and could give me answers to my questions

of " Did he suffer, did he have labored breathing, was it peaceful? " I

had the same issues with the NH dad lived at before going to the

hospital...they wouldn't call when dad had the flu and I walked in

finding him lying naked in his own waste, they didn't call when he

hadn't eaten for 2 days and I had not made it down there until the 3rd

day. The list goes on an on. I had not thought about those situations

until reading your post. I guess for me I have forgiven the staff at

the NH yet of course I haven't completely forgotten it. I am thankful

my dad regained all of the dignity and respect during his hospital stay

and when he was transferred to the last NH for four days. He had more

respect in those 2 1/2 weeks than he had in the 2 1/2 yrs at the NH in

Carlisle.

What questions do you have? Why is your heart so unsettled? I want to

help. The grieving process is so detailed, and individual to all, yet

maybe I can help you through it. You can email me personally as well.

It hurts me to know you are hurting and feel you have not had closure.

Please ask me anything.

Keeping you close in my heart, and in my prayers your name is always

sent up.

Many hugs to you Donna!!

Love

Sandie

Des Moines, IA

[Guest guest]

Donna, I remember when my dad died. I wasn't there either. He didn't die of

LBD. He was only 62 going on 63, but he had heart trouble. He had had bypass

surgery in 1982. He died in 1987. He went to the doctors that morning and the

doctor drove him to the hospital. He was in the hospital all day waiting for

the procedure (defibulator paddles). He was hungry around dinner and hadn't

eaten all day. My mom asked if he could have a sandwich and the nurse said

sure. Then they were told that they couldn't perform the procedure because my

father had eaten. Typical eh? Finally, at 10 pm my mom and my brother left the

hospital sure that they were not going to perform the procedure that day.

Around 11pm we got a phone call saying that they had completed the procedure and

dad was okay. Then 5 min. later they called back and said you better come, we

don't think he will make it. I rushed mom over to the hospital and I swear I

thought she was going to have a heart attack running to the ICU. Unfortunately

they were working on him when we arrived and they ushered us out to the waiting

room. I was told that they did the procedure which righted his heartbeat (which

was racing at 150 beats a minute and not working effectively as a pump.) It

began to speed up again and the next time they shocked it, it stopped and they

could not get it to start up again.

The next time I saw my dad he was dead.

I felt terrible for years for not being there when he died, not going to the

hospital during that day etc. My dad had had problems before and he hated it

when everybody stood around. He would have wanted me to stay home and look

after my boys then 3 and 1 and a half. I felt so selfish and ashamed though,

that I had not gone. Then I talked to our minister and he asked me what I would

have done if I had been there when he died. I said " I would have told him I

loved him " and he said " Don't you think he knew that? " I now can accept that

this was for the best as he would have chosen for me not to have been there, as

he would have tried desperately to spare me the grief. My mother and I saw him

right after he died. I promised to take care of mom. I have done the best that

I can do up until now to take care of her and I will do my best to continue this

as promised.

I hope you will find peace. I am sure your father knew that you loved him and

the bond you shared will continue forever.

Kath

Re: Donna

Donna

My heart is with you as you struggle through your unanswered questions.

I wasn't at my dads bedside either when he passed away. I am thankful

that someone we knew was there and could give me answers to my questions

of " Did he suffer, did he have labored breathing, was it peaceful? " I

had the same issues with the NH dad lived at before going to the

hospital...they wouldn't call when dad had the flu and I walked in

finding him lying naked in his own waste, they didn't call when he

hadn't eaten for 2 days and I had not made it down there until the 3rd

day. The list goes on an on. I had not thought about those situations

until reading your post. I guess for me I have forgiven the staff at

the NH yet of course I haven't completely forgotten it. I am thankful

my dad regained all of the dignity and respect during his hospital stay

and when he was transferred to the last NH for four days. He had more

respect in those 2 1/2 weeks than he had in the 2 1/2 yrs at the NH in

Carlisle.

What questions do you have? Why is your heart so unsettled? I want to

help. The grieving process is so detailed, and individual to all, yet

maybe I can help you through it. You can email me personally as well.

It hurts me to know you are hurting and feel you have not had closure.

Please ask me anything.

Keeping you close in my heart, and in my prayers your name is always

sent up.

Many hugs to you Donna!!

Love

Sandie

Des Moines, IA

[Guest guest]

Kath,

I am sure this sounds to many like I think I should have been there when

she died. That is only a small part of the picture. Some of this could

be old unresolved issues with my Mom. But mostly it is about the

disease and the inept people who are suppose to take care of our LO.

And their unwillingness to......I don't know what! Share information,

ask our opinion, be human, know these people do understand more than

they can express.

My Dad died of cancer. He died in 3 months. I was glad even if I

couldn't be there, I had seen him recently. My Aunt had a fine day with

her family one day. Then she went home and laid down in bed and never

woke up. Her daughter had a real hard time with that because it was

such a surprise. So there are all kinds of deaths. It was very painful

to watch them bring home my younger brother who was 19 and they needed a

picture so they could put him back together to send him home. He had

been hit head on by a drunk driver. So I know death. My older brother

was only 42 when he fell over in his yard from a heart attack and never

woke up. THIS SEEMS DIFFERENT Maybe is it the length of time. Maybe

it is the helplessness. But for me, this is not a normal hit by a car,

have a heart attack, dye in your sleep kind of death. And all those are

very painful deaths. Maybe it is the only one I have sat vigil at the

bedside.

Then there is the possibility this is as you say, no matter how it

happens, we have a problem with how we did it.

Thank you for sharing. And listening as I try to work it out.

Donna

[Guest guest]

Kath,

I am sure this sounds to many like I think I should have been there when

she died. That is only a small part of the picture. Some of this could

be old unresolved issues with my Mom. But mostly it is about the

disease and the inept people who are suppose to take care of our LO.

And their unwillingness to......I don't know what! Share information,

ask our opinion, be human, know these people do understand more than

they can express.

My Dad died of cancer. He died in 3 months. I was glad even if I

couldn't be there, I had seen him recently. My Aunt had a fine day with

her family one day. Then she went home and laid down in bed and never

woke up. Her daughter had a real hard time with that because it was

such a surprise. So there are all kinds of deaths. It was very painful

to watch them bring home my younger brother who was 19 and they needed a

picture so they could put him back together to send him home. He had

been hit head on by a drunk driver. So I know death. My older brother

was only 42 when he fell over in his yard from a heart attack and never

woke up. THIS SEEMS DIFFERENT Maybe is it the length of time. Maybe

it is the helplessness. But for me, this is not a normal hit by a car,

have a heart attack, dye in your sleep kind of death. And all those are

very painful deaths. Maybe it is the only one I have sat vigil at the

bedside.

Then there is the possibility this is as you say, no matter how it

happens, we have a problem with how we did it.

Thank you for sharing. And listening as I try to work it out.

Donna

[Guest guest]

Thanks Shirley,

Yes, I understand difficult Mothers and LBD. I thought you had decided

on a nh? Didn't that happen when it was suppose to or did I miss

something?

You have a big plate full too. It would be very hard to have watched

Dad if he were still alive with my Mom. She was always nasty with him

anyway. So I can imagine what it would be like with the disease.

I do think this will get better with time. And writing to the group has

always been a help to me. Even the night you and I wrote back and forth

during the wee hours was helpful. Thanks again.

Donna

[Guest guest]

Thanks Shirley,

Yes, I understand difficult Mothers and LBD. I thought you had decided

on a nh? Didn't that happen when it was suppose to or did I miss

something?

You have a big plate full too. It would be very hard to have watched

Dad if he were still alive with my Mom. She was always nasty with him

anyway. So I can imagine what it would be like with the disease.

I do think this will get better with time. And writing to the group has

always been a help to me. Even the night you and I wrote back and forth

during the wee hours was helpful. Thanks again.

Donna

[Guest guest]

nursing home should be here soon

just getting it straighned out the doc didnt have the right info so he

rescheduled for tuesday, its kind of mixed up between Medi-Cal and the NH

and doctor. They all have diffent ways it should be done, meanwhile it just

makes it harder and I feel more guilty because I want a bit of my life back

and my house. Another thing that's hard is mom keeps blameing her current

situation on her broken hip. I told her she couldnt walk well before she

broke her hip and Dr Gibbs told her to use a walker or wheel chair and if

she did she wouldnt have broken her hip. I explained that Lewy is

responsible for most of her walking problems and she was surprized. I think

it's finally sinking in a little that lewy is the monster and not her spine,

or hip or the fact that she tripped. She says that all the doctors told her

the hip was her problem. I told her she talked to the wrong doctors they

don't know lewy body and she should be talking to Dr Gibbs because he

understands it a little. Day one he told her her prognosis but it

immediately went in one ear and out the other to her and my dad both.

>From: mido101@...

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: Re: Donna

>Date: Sat, 30 Nov 2002 02:26:18 -0500 (EST)

>

>Thanks Shirley,

>

>Yes, I understand difficult Mothers and LBD. I thought you had decided

>on a nh? Didn't that happen when it was suppose to or did I miss

>something?

>

>You have a big plate full too. It would be very hard to have watched

>Dad if he were still alive with my Mom. She was always nasty with him

>anyway. So I can imagine what it would be like with the disease.

>

>I do think this will get better with time. And writing to the group has

>always been a help to me. Even the night you and I wrote back and forth

>during the wee hours was helpful. Thanks again.

>

>Donna

>

_________________________________________________________________

Protect your PC - get McAfee.com VirusScan Online

http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

[Guest guest]

nursing home should be here soon

just getting it straighned out the doc didnt have the right info so he

rescheduled for tuesday, its kind of mixed up between Medi-Cal and the NH

and doctor. They all have diffent ways it should be done, meanwhile it just

makes it harder and I feel more guilty because I want a bit of my life back

and my house. Another thing that's hard is mom keeps blameing her current

situation on her broken hip. I told her she couldnt walk well before she

broke her hip and Dr Gibbs told her to use a walker or wheel chair and if

she did she wouldnt have broken her hip. I explained that Lewy is

responsible for most of her walking problems and she was surprized. I think

it's finally sinking in a little that lewy is the monster and not her spine,

or hip or the fact that she tripped. She says that all the doctors told her

the hip was her problem. I told her she talked to the wrong doctors they

don't know lewy body and she should be talking to Dr Gibbs because he

understands it a little. Day one he told her her prognosis but it

immediately went in one ear and out the other to her and my dad both.

>From: mido101@...

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: Re: Donna

>Date: Sat, 30 Nov 2002 02:26:18 -0500 (EST)

>

>Thanks Shirley,

>

>Yes, I understand difficult Mothers and LBD. I thought you had decided

>on a nh? Didn't that happen when it was suppose to or did I miss

>something?

>

>You have a big plate full too. It would be very hard to have watched

>Dad if he were still alive with my Mom. She was always nasty with him

>anyway. So I can imagine what it would be like with the disease.

>

>I do think this will get better with time. And writing to the group has

>always been a help to me. Even the night you and I wrote back and forth

>during the wee hours was helpful. Thanks again.

>

>Donna

>

_________________________________________________________________

Protect your PC - get McAfee.com VirusScan Online

http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

[Guest guest]

Shirley,

You have a right to your home back and your life back. Hope by Tuesday

all is in order. And she will probably believe what ever she wants to

about her hip. I remember those days when I tried to explain and

nothing went in or if it did, right out again.

Donna

[Guest guest]

HEY! That had to be Donna we chatted with at the office! DUhhhhh....I

knew that it was someone familiar! OK, I am a ditz today!

Cindee

>

> Did you bring Bobbe to the meeting? I spent the evening driving my

> daughter around town to say goodbye to her friends. A worthy

cause,

> to be sure, since she is leaving for England in the morning.

>

> Marta

[Guest guest]

Donna had her DS suergery yesterday. Has anyone heard how she is

doing? I believe she was a revision.

Terri in Paso and only 6 days to go.