Re: Update on my mother

[Guest guest]

Dear Lynn

Just wanted to confirm that you are not alone as you walk this journey with

your mother.

There are lots of us in the group 'walking' with you at this difficult time.

It's so good to hear that there are many people caring for your mother and

looking out for her needs.

Thinking of you with love,

Elaine from Sydney Australia

Carer for four years for husband Jim who died peacefully in hospital on 12th

February 2011.

Brain analysis, as a result of brain donation, has now confirmed the

diagnosis of Diffuse Lewy Body Disease

[Guest guest]

Dear Lynn

Just wanted to confirm that you are not alone as you walk this journey with

your mother.

There are lots of us in the group 'walking' with you at this difficult time.

It's so good to hear that there are many people caring for your mother and

looking out for her needs.

Thinking of you with love,

Elaine from Sydney Australia

Carer for four years for husband Jim who died peacefully in hospital on 12th

February 2011.

Brain analysis, as a result of brain donation, has now confirmed the

diagnosis of Diffuse Lewy Body Disease

[Guest guest]

God bless you Lynn.

I am responding to you this morning as I feel I am reading where my Mom is at

right now.

She is starting to pant with her breathing and eating is starting to not be as

enjoyable for her, she is only drinking so far.

When she was recently hospitalized they gave her morphine to calm her breathing

down. I just dont understand the breathing part.

What is that about? Is that fear of death? I know my Mom is consumed by fear and

pain which frightens me.

I feel that I failed her as a daughter. She was diagnosed with LBD on 3/4/10 -

my birthday, of all days. I will never forget.

I had to take her to be cared for in November of 2011 as she started to urinate

in the bed and on carpets and the hallway and even defecated in the bathtub

quite a few times. She was lost in the house, cried a lot to " go home, " and home

to her was Queens, where we used to live as we now live in Massapequa, NY. I am

so worried that I did her wrong and put her through " the system " as, now, she is

worse. I know this is a progressive disease, although, I feel as a 43 year old

woman, caring for my Father, who is 79 with congestive heart disease and is

bipolar, it was too much to handle. On top of it, no one in the family came

forward to help at all. Not even the child she watched from 6 mos. old and is

now 30 becoming a Nurse herself. She disappeared and didn't want any part of any

of this disease. She only wanted me to do the " dirty " work, and would come vist

at her convenience and leave within minutes of visiting her. My Mom was VERY

good to her in life, and gave her only a few years ago $10,000 for a car that

she never even took her to a doctor in when I was losing my mind with the

diagnosis process of this disease. I was pretty much left to fence for

everything on my own, the doctors, hospitals, lawyers, medicaid application. I

lost 3 jobs in the process, and could have lost the family home if I didn't do

all that I did. I am still trying to pay off huge debts and get the medicaid

application approved. I feel she is dying in my heart. I visited her the other

day at the new Nursing home, and watched them bathe her on a cart, and wheeled

her into her new bed while she writhed in the sheets with her hands clenched and

fingers twisted from I think meds. Her face is noticibly in pain and her body

has lost a lot of weight. She looks like an infant and I want to cry. I hug her

and continually tell her I love her and she responds. She knows I love her, I

can see it in her eyes. She doesn't hold anything against me. I just feel bad

every night sleeping in her house, now my house, knowing that I took the car

keys from her and the house keys now. She is alone in a place that she misses

her husband, my Father and this is the ultimate loss for her as she was happily

married for 49 years with him. I am pained by this loss of my Mom and feel this

is my punishment for the rest of my life, to miss her until I die. I know I need

to turn this all around through years of therapy to make this better for myself.

I just feel that because of the lousy healthcare system this country has, we the

caregivers are the 'silent minority' that suffers in the underbelly of society

and has no voice and no rights and carrys the burdens of the entire family and

health and future of our parents alone as we are continually shuffled by

non-caring bureacratic people on the phone who refer us on and on until we hit a

brick wall and have to start all over again, until we have to make decisions

that are dire and not in the best interest of our loving Mothers, family members

who did SO much in their vital state of life for us.

God help us all get through this journey together, this Sunday morning which the

sun is shining so brightly upon us, hear our words, for peace, mercy, compassion

and your guidance on Earth. This can be a very lonely place sometimes for us.

I am grateful to hear all of your stories here. I don't always respond, as I

just read. I was compelled today to write, as this was cathartic for me with all

that I am feeling and going through, as I know all of you, my brothers and

sisters are going through on your own journeys.

My Mother, her name is Rosemary. She is 70 years old. Her Mother is alive and

well, 92 living in my house also. You just never know in life how things are

going to go. Now I worry how my future will look every day. Will this gene catch

me or miss me? I just can't think of everything all at once. I am single and

have no children of my own to care for me as I have tried to for my Mom. So its

all a mystery.

I pray for you Lynn and your Mom in hospice. May her journey home be peaceful.

With love, Alfieri

Massapequa, NY

Mother - Rosemary Alfieri

diagnosed LBD, 3/4/10

Update on my mother

As of Thursday night, Mom was placed in the hands of Hospice on continual care.

She is on oxygen to ease her respiration. She stopped taking food and liquids

after lunch on Thursday. Because of her dramatic weight loss, she has an issue

with skin breakdown on her tailbone but it is being monitored closely. A very

small amount of morphine is given during dressing changes on that area to ease

any discomfort. She seems to be resting comfortably. We believe she still has an

awareness because she seems to be trying to speak when she hears us talking. All

of the hard decisions have been made.

I am so grateful for all who surround her now. She is loved, protected and

comforted.

Best wishes,

Lynn in Florida

[Guest guest]

God bless you Lynn.

I am responding to you this morning as I feel I am reading where my Mom is at

right now.

She is starting to pant with her breathing and eating is starting to not be as

enjoyable for her, she is only drinking so far.

When she was recently hospitalized they gave her morphine to calm her breathing

down. I just dont understand the breathing part.

What is that about? Is that fear of death? I know my Mom is consumed by fear and

pain which frightens me.

I feel that I failed her as a daughter. She was diagnosed with LBD on 3/4/10 -

my birthday, of all days. I will never forget.

I had to take her to be cared for in November of 2011 as she started to urinate

in the bed and on carpets and the hallway and even defecated in the bathtub

quite a few times. She was lost in the house, cried a lot to " go home, " and home

to her was Queens, where we used to live as we now live in Massapequa, NY. I am

so worried that I did her wrong and put her through " the system " as, now, she is

worse. I know this is a progressive disease, although, I feel as a 43 year old

woman, caring for my Father, who is 79 with congestive heart disease and is

bipolar, it was too much to handle. On top of it, no one in the family came

forward to help at all. Not even the child she watched from 6 mos. old and is

now 30 becoming a Nurse herself. She disappeared and didn't want any part of any

of this disease. She only wanted me to do the " dirty " work, and would come vist

at her convenience and leave within minutes of visiting her. My Mom was VERY

good to her in life, and gave her only a few years ago $10,000 for a car that

she never even took her to a doctor in when I was losing my mind with the

diagnosis process of this disease. I was pretty much left to fence for

everything on my own, the doctors, hospitals, lawyers, medicaid application. I

lost 3 jobs in the process, and could have lost the family home if I didn't do

all that I did. I am still trying to pay off huge debts and get the medicaid

application approved. I feel she is dying in my heart. I visited her the other

day at the new Nursing home, and watched them bathe her on a cart, and wheeled

her into her new bed while she writhed in the sheets with her hands clenched and

fingers twisted from I think meds. Her face is noticibly in pain and her body

has lost a lot of weight. She looks like an infant and I want to cry. I hug her

and continually tell her I love her and she responds. She knows I love her, I

can see it in her eyes. She doesn't hold anything against me. I just feel bad

every night sleeping in her house, now my house, knowing that I took the car

keys from her and the house keys now. She is alone in a place that she misses

her husband, my Father and this is the ultimate loss for her as she was happily

married for 49 years with him. I am pained by this loss of my Mom and feel this

is my punishment for the rest of my life, to miss her until I die. I know I need

to turn this all around through years of therapy to make this better for myself.

I just feel that because of the lousy healthcare system this country has, we the

caregivers are the 'silent minority' that suffers in the underbelly of society

and has no voice and no rights and carrys the burdens of the entire family and

health and future of our parents alone as we are continually shuffled by

non-caring bureacratic people on the phone who refer us on and on until we hit a

brick wall and have to start all over again, until we have to make decisions

that are dire and not in the best interest of our loving Mothers, family members

who did SO much in their vital state of life for us.

God help us all get through this journey together, this Sunday morning which the

sun is shining so brightly upon us, hear our words, for peace, mercy, compassion

and your guidance on Earth. This can be a very lonely place sometimes for us.

I am grateful to hear all of your stories here. I don't always respond, as I

just read. I was compelled today to write, as this was cathartic for me with all

that I am feeling and going through, as I know all of you, my brothers and

sisters are going through on your own journeys.

My Mother, her name is Rosemary. She is 70 years old. Her Mother is alive and

well, 92 living in my house also. You just never know in life how things are

going to go. Now I worry how my future will look every day. Will this gene catch

me or miss me? I just can't think of everything all at once. I am single and

have no children of my own to care for me as I have tried to for my Mom. So its

all a mystery.

I pray for you Lynn and your Mom in hospice. May her journey home be peaceful.

With love, Alfieri

Massapequa, NY

Mother - Rosemary Alfieri

diagnosed LBD, 3/4/10

Update on my mother

As of Thursday night, Mom was placed in the hands of Hospice on continual care.

She is on oxygen to ease her respiration. She stopped taking food and liquids

after lunch on Thursday. Because of her dramatic weight loss, she has an issue

with skin breakdown on her tailbone but it is being monitored closely. A very

small amount of morphine is given during dressing changes on that area to ease

any discomfort. She seems to be resting comfortably. We believe she still has an

awareness because she seems to be trying to speak when she hears us talking. All

of the hard decisions have been made.

I am so grateful for all who surround her now. She is loved, protected and

comforted.

Best wishes,

Lynn in Florida

[Guest guest]

God bless you Lynn.

I am responding to you this morning as I feel I am reading where my Mom is at

right now.

She is starting to pant with her breathing and eating is starting to not be as

enjoyable for her, she is only drinking so far.

When she was recently hospitalized they gave her morphine to calm her breathing

down. I just dont understand the breathing part.

What is that about? Is that fear of death? I know my Mom is consumed by fear and

pain which frightens me.

I feel that I failed her as a daughter. She was diagnosed with LBD on 3/4/10 -

my birthday, of all days. I will never forget.

I had to take her to be cared for in November of 2011 as she started to urinate

in the bed and on carpets and the hallway and even defecated in the bathtub

quite a few times. She was lost in the house, cried a lot to " go home, " and home

to her was Queens, where we used to live as we now live in Massapequa, NY. I am

so worried that I did her wrong and put her through " the system " as, now, she is

worse. I know this is a progressive disease, although, I feel as a 43 year old

woman, caring for my Father, who is 79 with congestive heart disease and is

bipolar, it was too much to handle. On top of it, no one in the family came

forward to help at all. Not even the child she watched from 6 mos. old and is

now 30 becoming a Nurse herself. She disappeared and didn't want any part of any

of this disease. She only wanted me to do the " dirty " work, and would come vist

at her convenience and leave within minutes of visiting her. My Mom was VERY

good to her in life, and gave her only a few years ago $10,000 for a car that

she never even took her to a doctor in when I was losing my mind with the

diagnosis process of this disease. I was pretty much left to fence for

everything on my own, the doctors, hospitals, lawyers, medicaid application. I

lost 3 jobs in the process, and could have lost the family home if I didn't do

all that I did. I am still trying to pay off huge debts and get the medicaid

application approved. I feel she is dying in my heart. I visited her the other

day at the new Nursing home, and watched them bathe her on a cart, and wheeled

her into her new bed while she writhed in the sheets with her hands clenched and

fingers twisted from I think meds. Her face is noticibly in pain and her body

has lost a lot of weight. She looks like an infant and I want to cry. I hug her

and continually tell her I love her and she responds. She knows I love her, I

can see it in her eyes. She doesn't hold anything against me. I just feel bad

every night sleeping in her house, now my house, knowing that I took the car

keys from her and the house keys now. She is alone in a place that she misses

her husband, my Father and this is the ultimate loss for her as she was happily

married for 49 years with him. I am pained by this loss of my Mom and feel this

is my punishment for the rest of my life, to miss her until I die. I know I need

to turn this all around through years of therapy to make this better for myself.

I just feel that because of the lousy healthcare system this country has, we the

caregivers are the 'silent minority' that suffers in the underbelly of society

and has no voice and no rights and carrys the burdens of the entire family and

health and future of our parents alone as we are continually shuffled by

non-caring bureacratic people on the phone who refer us on and on until we hit a

brick wall and have to start all over again, until we have to make decisions

that are dire and not in the best interest of our loving Mothers, family members

who did SO much in their vital state of life for us.

God help us all get through this journey together, this Sunday morning which the

sun is shining so brightly upon us, hear our words, for peace, mercy, compassion

and your guidance on Earth. This can be a very lonely place sometimes for us.

I am grateful to hear all of your stories here. I don't always respond, as I

just read. I was compelled today to write, as this was cathartic for me with all

that I am feeling and going through, as I know all of you, my brothers and

sisters are going through on your own journeys.

My Mother, her name is Rosemary. She is 70 years old. Her Mother is alive and

well, 92 living in my house also. You just never know in life how things are

going to go. Now I worry how my future will look every day. Will this gene catch

me or miss me? I just can't think of everything all at once. I am single and

have no children of my own to care for me as I have tried to for my Mom. So its

all a mystery.

I pray for you Lynn and your Mom in hospice. May her journey home be peaceful.

With love, Alfieri

Massapequa, NY

Mother - Rosemary Alfieri

diagnosed LBD, 3/4/10

Update on my mother

As of Thursday night, Mom was placed in the hands of Hospice on continual care.

She is on oxygen to ease her respiration. She stopped taking food and liquids

after lunch on Thursday. Because of her dramatic weight loss, she has an issue

with skin breakdown on her tailbone but it is being monitored closely. A very

small amount of morphine is given during dressing changes on that area to ease

any discomfort. She seems to be resting comfortably. We believe she still has an

awareness because she seems to be trying to speak when she hears us talking. All

of the hard decisions have been made.

I am so grateful for all who surround her now. She is loved, protected and

comforted.

Best wishes,

Lynn in Florida

[Guest guest]

we live close to each other. While my Mom hasn't been formally diagnosed

with LBD, she was diagnosed with frontal lobe dementia, all evidence points to

this. It's so hard, please hang in there. You have support here from so many who

know your pain. I lurk too but every so often you feel compelled to speak. Take

care of yourself!!!

>

> God bless you Lynn.

>

> I am responding to you this morning as I feel I am reading where my Mom is at

right now.

> She is starting to pant with her breathing and eating is starting to not be as

enjoyable for her, she is only drinking so far.

> When she was recently hospitalized they gave her morphine to calm her

breathing down. I just dont understand the breathing part.

> What is that about? Is that fear of death? I know my Mom is consumed by fear

and pain which frightens me.

> I feel that I failed her as a daughter. She was diagnosed with LBD on 3/4/10 -

my birthday, of all days. I will never forget.

> I had to take her to be cared for in November of 2011 as she started to

urinate in the bed and on carpets and the hallway and even defecated in the

bathtub quite a few times. She was lost in the house, cried a lot to " go home, "

and home to her was Queens, where we used to live as we now live in Massapequa,

NY. I am so worried that I did her wrong and put her through " the system " as,

now, she is worse. I know this is a progressive disease, although, I feel as a

43 year old woman, caring for my Father, who is 79 with congestive heart disease

and is bipolar, it was too much to handle. On top of it, no one in the family

came forward to help at all. Not even the child she watched from 6 mos. old and

is now 30 becoming a Nurse herself. She disappeared and didn't want any part of

any of this disease. She only wanted me to do the " dirty " work, and would come

vist at her convenience and leave within minutes of visiting her. My Mom was

VERY good to her in life, and gave her only a few years ago $10,000 for a car

that she never even took her to a doctor in when I was losing my mind with the

diagnosis process of this disease. I was pretty much left to fence for

everything on my own, the doctors, hospitals, lawyers, medicaid application. I

lost 3 jobs in the process, and could have lost the family home if I didn't do

all that I did. I am still trying to pay off huge debts and get the medicaid

application approved. I feel she is dying in my heart. I visited her the other

day at the new Nursing home, and watched them bathe her on a cart, and wheeled

her into her new bed while she writhed in the sheets with her hands clenched and

fingers twisted from I think meds. Her face is noticibly in pain and her body

has lost a lot of weight. She looks like an infant and I want to cry. I hug her

and continually tell her I love her and she responds. She knows I love her, I

can see it in her eyes. She doesn't hold anything against me. I just feel bad

every night sleeping in her house, now my house, knowing that I took the car

keys from her and the house keys now. She is alone in a place that she misses

her husband, my Father and this is the ultimate loss for her as she was happily

married for 49 years with him. I am pained by this loss of my Mom and feel this

is my punishment for the rest of my life, to miss her until I die. I know I need

to turn this all around through years of therapy to make this better for myself.

I just feel that because of the lousy healthcare system this country has, we the

caregivers are the 'silent minority' that suffers in the underbelly of society

and has no voice and no rights and carrys the burdens of the entire family and

health and future of our parents alone as we are continually shuffled by

non-caring bureacratic people on the phone who refer us on and on until we hit a

brick wall and have to start all over again, until we have to make decisions

that are dire and not in the best interest of our loving Mothers, family members

who did SO much in their vital state of life for us.

> God help us all get through this journey together, this Sunday morning which

the sun is shining so brightly upon us, hear our words, for peace, mercy,

compassion and your guidance on Earth. This can be a very lonely place sometimes

for us.

> I am grateful to hear all of your stories here. I don't always respond, as I

just read. I was compelled today to write, as this was cathartic for me with all

that I am feeling and going through, as I know all of you, my brothers and

sisters are going through on your own journeys.

> My Mother, her name is Rosemary. She is 70 years old. Her Mother is alive and

well, 92 living in my house also. You just never know in life how things are

going to go. Now I worry how my future will look every day. Will this gene catch

me or miss me? I just can't think of everything all at once. I am single and

have no children of my own to care for me as I have tried to for my Mom. So its

all a mystery.

> I pray for you Lynn and your Mom in hospice. May her journey home be peaceful.

> With love, Alfieri

> Massapequa, NY

>

> Mother - Rosemary Alfieri

> diagnosed LBD, 3/4/10

>

>

>

>

> Update on my mother

>

>

>

>

> As of Thursday night, Mom was placed in the hands of Hospice on continual

care. She is on oxygen to ease her respiration. She stopped taking food and

liquids after lunch on Thursday. Because of her dramatic weight loss, she has an

issue with skin breakdown on her tailbone but it is being monitored closely. A

very small amount of morphine is given during dressing changes on that area to

ease any discomfort. She seems to be resting comfortably. We believe she still

has an awareness because she seems to be trying to speak when she hears us

talking. All of the hard decisions have been made.

>

> I am so grateful for all who surround her now. She is loved, protected and

comforted.

>

> Best wishes,

> Lynn in Florida

>

>

>

>

>

>

>

>

[Guest guest]

Dear ,

I am so sorry to read this. It sounds like your hands are overflowing. Have

you come to one of Long Island group meetings?

Sending you strength and love,

Helene in NY

(Mom will be 78 on March 5th - has had lbd about 12 years)

>

> God bless you Lynn.

>

> I am responding to you this morning as I feel I am reading where my Mom is at

right now.

> She is starting to pant with her breathing and eating is starting to not be as

enjoyable for her, she is only drinking so far.

> When she was recently hospitalized they gave her morphine to calm her

breathing down. I just dont understand the breathing part.

> What is that about? Is that fear of death? I know my Mom is consumed by fear

and pain which frightens me.

> I feel that I failed her as a daughter. She was diagnosed with LBD on 3/4/10 -

my birthday, of all days. I will never forget.

> I had to take her to be cared for in November of 2011 as she started to

urinate in the bed and on carpets and the hallway and even defecated in the

bathtub quite a few times. She was lost in the house, cried a lot to " go home, "

and home to her was Queens, where we used to live as we now live in Massapequa,

NY. I am so worried that I did her wrong and put her through " the system " as,

now, she is worse. I know this is a progressive disease, although, I feel as a

43 year old woman, caring for my Father, who is 79 with congestive heart disease

and is bipolar, it was too much to handle. On top of it, no one in the family

came forward to help at all. Not even the child she watched from 6 mos. old and

is now 30 becoming a Nurse herself. She disappeared and didn't want any part of

any of this disease. She only wanted me to do the " dirty " work, and would come

vist at her convenience and leave within minutes of visiting her. My Mom was

VERY good to her in life, and gave her only a few years ago $10,000 for a car

that she never even took her to a doctor in when I was losing my mind with the

diagnosis process of this disease. I was pretty much left to fence for

everything on my own, the doctors, hospitals, lawyers, medicaid application. I

lost 3 jobs in the process, and could have lost the family home if I didn't do

all that I did. I am still trying to pay off huge debts and get the medicaid

application approved. I feel she is dying in my heart. I visited her the other

day at the new Nursing home, and watched them bathe her on a cart, and wheeled

her into her new bed while she writhed in the sheets with her hands clenched and

fingers twisted from I think meds. Her face is noticibly in pain and her body

has lost a lot of weight. She looks like an infant and I want to cry. I hug her

and continually tell her I love her and she responds. She knows I love her, I

can see it in her eyes. She doesn't hold anything against me. I just feel bad

every night sleeping in her house, now my house, knowing that I took the car

keys from her and the house keys now. She is alone in a place that she misses

her husband, my Father and this is the ultimate loss for her as she was happily

married for 49 years with him. I am pained by this loss of my Mom and feel this

is my punishment for the rest of my life, to miss her until I die. I know I need

to turn this all around through years of therapy to make this better for myself.

I just feel that because of the lousy healthcare system this country has, we the

caregivers are the 'silent minority' that suffers in the underbelly of society

and has no voice and no rights and carrys the burdens of the entire family and

health and future of our parents alone as we are continually shuffled by

non-caring bureacratic people on the phone who refer us on and on until we hit a

brick wall and have to start all over again, until we have to make decisions

that are dire and not in the best interest of our loving Mothers, family members

who did SO much in their vital state of life for us.

> God help us all get through this journey together, this Sunday morning which

the sun is shining so brightly upon us, hear our words, for peace, mercy,

compassion and your guidance on Earth. This can be a very lonely place sometimes

for us.

> I am grateful to hear all of your stories here. I don't always respond, as I

just read. I was compelled today to write, as this was cathartic for me with all

that I am feeling and going through, as I know all of you, my brothers and

sisters are going through on your own journeys.

> My Mother, her name is Rosemary. She is 70 years old. Her Mother is alive and

well, 92 living in my house also. You just never know in life how things are

going to go. Now I worry how my future will look every day. Will this gene catch

me or miss me? I just can't think of everything all at once. I am single and

have no children of my own to care for me as I have tried to for my Mom. So its

all a mystery.

> I pray for you Lynn and your Mom in hospice. May her journey home be peaceful.

> With love, Alfieri

> Massapequa, NY

>

> Mother - Rosemary Alfieri

> diagnosed LBD, 3/4/10

>

>

>

>

> Update on my mother

>

>

>

>

> As of Thursday night, Mom was placed in the hands of Hospice on continual

care. She is on oxygen to ease her respiration. She stopped taking food and

liquids after lunch on Thursday. Because of her dramatic weight loss, she has an

issue with skin breakdown on her tailbone but it is being monitored closely. A

very small amount of morphine is given during dressing changes on that area to

ease any discomfort. She seems to be resting comfortably. We believe she still

has an awareness because she seems to be trying to speak when she hears us

talking. All of the hard decisions have been made.

>

> I am so grateful for all who surround her now. She is loved, protected and

comforted.

>

> Best wishes,

> Lynn in Florida

>

>

>

>

>

>

>

>

[Guest guest]

Oh, . My heart breaks for you. I am also single, never married and

no children. Mom's neuropsych told us that the AZ her father was diagnosed

with in the '60s was probably LBD like Mom's. Now her brother can't hide

his dementia anymore. I've strongly urged my aunt and cousins to take him

to Mayo (they live close by) and try to see Dr. Boeve. Right now, my aunt

says his diagnosis is " dementia " but doesn't know what kind. Until I spoke

at length with her and my cousin about Mom's LBD, I don't think she

realized that it mattered what kind. (And she's a very well-educated

woman, a former professor.) This seems to be traveling through my mother's

family and there's a very strong chance that it will reach me. So, as a

single person, I am making sure my long term care insurance is kept up and

am, at 59, looking at starting the senior housing cycle. I think if I

lived in a building with young people I'd be that fussy old lady down the

hall. Two nephews and one niece have promised to take care of me should I

need it, but to be honest they are really going to have their hands full

with their own parents.

I haven't been on for a few weeks. That's because my mom passed on

February 9th. We were all very lucky and blessed. Your description of

what your mom is going through, , is a state Mom hadn't reached yet,

but I think she was getting close. She had lost so much already - words,

walking or even standing, needed help with toileting, bathing, eating,

etc. Yet she could still get out on occasion to spend time with her

family. We'd had a wonderful day just the week before. Mom was diagnosed

with pneumonia on Tuesday and passed Thursday night, very gently and with

family holding her. Except for nebulizer treatments on Tuesday to make her

comfortable, the pneumonia was not treated at all. No antibiotics, even.

Everyone involved saw this as Mom's chance to let go and that's what she

did. It was a great blessing and one of the most beautiful experiences of

my life.

Lynn, Judy, and everyone else going through the end stages (or any stage),

you are always in my thoughts. Medicaid applications do take a long time.

Mom's took 6 months for approval, but she was already in the NH and they

were very patient about payment. I don't know what we would have done if

things had been otherwise. Keep hounding social services. It's so easy

for applications to drop to the bottom of the pile.

I may not write as often as I had before, but believe me that this doesn't

end with a loved one's passing. There are so many things to settle! (For

what may be the first time in my life, I am really appreciating lawyers,

especially ours who hasn't charged me for the couple of phone calls I've

made seeking advice.) Even if I don't write often, know that you are all

in my thoughts.

Kate Knapp

> **

>

>

> As of Thursday night, Mom was placed in the hands of Hospice on continual

> care. She is on oxygen to ease her respiration. She stopped taking food and

> liquids after lunch on Thursday. Because of her dramatic weight loss, she

> has an issue with skin breakdown on her tailbone but it is being monitored

> closely. A very small amount of morphine is given during dressing changes

> on that area to ease any discomfort. She seems to be resting comfortably.

> We believe she still has an awareness because she seems to be trying to

> speak when she hears us talking. All of the hard decisions have been made.

>

> I am so grateful for all who surround her now. She is loved, protected and

> comforted.

>

> Best wishes,

> Lynn in Florida

>

>

>

--

Kate Knapp, OIT

University of Minnesota

You were born with certain gifts and talents.

In kindergarten you were taught to share.

The world needs all of the gifts it can get.

Don’t be shy.

[Guest guest]

Oh, . My heart breaks for you. I am also single, never married and

no children. Mom's neuropsych told us that the AZ her father was diagnosed

with in the '60s was probably LBD like Mom's. Now her brother can't hide

his dementia anymore. I've strongly urged my aunt and cousins to take him

to Mayo (they live close by) and try to see Dr. Boeve. Right now, my aunt

says his diagnosis is " dementia " but doesn't know what kind. Until I spoke

at length with her and my cousin about Mom's LBD, I don't think she

realized that it mattered what kind. (And she's a very well-educated

woman, a former professor.) This seems to be traveling through my mother's

family and there's a very strong chance that it will reach me. So, as a

single person, I am making sure my long term care insurance is kept up and

am, at 59, looking at starting the senior housing cycle. I think if I

lived in a building with young people I'd be that fussy old lady down the

hall. Two nephews and one niece have promised to take care of me should I

need it, but to be honest they are really going to have their hands full

with their own parents.

I haven't been on for a few weeks. That's because my mom passed on

February 9th. We were all very lucky and blessed. Your description of

what your mom is going through, , is a state Mom hadn't reached yet,

but I think she was getting close. She had lost so much already - words,

walking or even standing, needed help with toileting, bathing, eating,

etc. Yet she could still get out on occasion to spend time with her

family. We'd had a wonderful day just the week before. Mom was diagnosed

with pneumonia on Tuesday and passed Thursday night, very gently and with

family holding her. Except for nebulizer treatments on Tuesday to make her

comfortable, the pneumonia was not treated at all. No antibiotics, even.

Everyone involved saw this as Mom's chance to let go and that's what she

did. It was a great blessing and one of the most beautiful experiences of

my life.

Lynn, Judy, and everyone else going through the end stages (or any stage),

you are always in my thoughts. Medicaid applications do take a long time.

Mom's took 6 months for approval, but she was already in the NH and they

were very patient about payment. I don't know what we would have done if

things had been otherwise. Keep hounding social services. It's so easy

for applications to drop to the bottom of the pile.

I may not write as often as I had before, but believe me that this doesn't

end with a loved one's passing. There are so many things to settle! (For

what may be the first time in my life, I am really appreciating lawyers,

especially ours who hasn't charged me for the couple of phone calls I've

made seeking advice.) Even if I don't write often, know that you are all

in my thoughts.

Kate Knapp

> **

>

>

> As of Thursday night, Mom was placed in the hands of Hospice on continual

> care. She is on oxygen to ease her respiration. She stopped taking food and

> liquids after lunch on Thursday. Because of her dramatic weight loss, she

> has an issue with skin breakdown on her tailbone but it is being monitored

> closely. A very small amount of morphine is given during dressing changes

> on that area to ease any discomfort. She seems to be resting comfortably.

> We believe she still has an awareness because she seems to be trying to

> speak when she hears us talking. All of the hard decisions have been made.

>

> I am so grateful for all who surround her now. She is loved, protected and

> comforted.

>

> Best wishes,

> Lynn in Florida

>

>

>

--

Kate Knapp, OIT

University of Minnesota

You were born with certain gifts and talents.

In kindergarten you were taught to share.

The world needs all of the gifts it can get.

Don’t be shy.

[Guest guest]

Dear Kate,

 I was so sorry to read about your Mom, but I'm glad that her loved ones were

nearby when she passed. 

I wish you many more years of good health.

Sending hugs from NY,

Helene

>________________________________

>

>To: LBDcaregivers

>Sent: Thursday, March 1, 2012 12:19 PM

>Subject: Re: Update on my mother

>

>Oh, .  My heart breaks for you.  I am also single, never married and

>no children.  Mom's neuropsych told us that the AZ her father was diagnosed

>with in the '60s was probably LBD like Mom's.  Now her brother can't hide

>his dementia anymore.  I've strongly urged my aunt and cousins to take him

>to Mayo (they live close by) and try to see Dr. Boeve.  Right now, my aunt

>says his diagnosis is " dementia " but doesn't know what kind.  Until I spoke

>at length with her and my cousin about Mom's LBD, I don't think she

>realized that it mattered what kind.  (And she's a very well-educated

>woman, a former professor.)  This seems to be traveling through my mother's

>family and there's a very strong chance that it will reach me.  So, as a

>single person, I am making sure my long term care insurance is kept up and

>am, at 59, looking at starting the senior housing cycle.  I think if I

>lived in a building with young people I'd be that fussy old lady down the

>hall.  Two nephews and one niece have promised to take care of me should I

>need it, but to be honest they are really going to have their hands full

>with their own parents.

>

>I haven't been on for a few weeks.  That's because my mom passed on

>February 9th.  We were all very lucky and blessed.  Your description of

>what your mom is going through, , is a state Mom hadn't reached yet,

>but I think she was getting close.  She had lost so much already - words,

>walking or even standing, needed help with toileting, bathing, eating,

>etc.  Yet she could still get out on occasion to spend time with her

>family.  We'd had a wonderful day just the week before.  Mom was diagnosed

>with pneumonia on Tuesday and passed Thursday night, very gently and with

>family holding her.  Except for nebulizer treatments on Tuesday to make her

>comfortable, the pneumonia was not treated at all.  No antibiotics, even.

>Everyone involved saw this as Mom's chance to let go and that's what she

>did.  It was a great blessing and one of the most beautiful experiences of

>my life.

>

>Lynn, Judy, and everyone else going through the end stages (or any stage),

>you are always in my thoughts.  Medicaid applications do take a long time.

>Mom's took 6 months for approval, but she was already in the NH and they

>were very patient about payment.  I don't know what we would have done if

>things had been otherwise.  Keep hounding social services.  It's so easy

>for applications to drop to the bottom of the pile.

>

>I may not write as often as I had before, but believe me that this doesn't

>end with a loved one's passing.  There are so many things to settle!  (For

>what may be the first time in my life, I am really appreciating lawyers,

>especially ours who hasn't charged me for the couple of phone calls I've

>made seeking advice.)  Even if I don't write often, know that you are all

>in my thoughts.

>

>Kate Knapp

>

>

>

>> **

>>

>>

>> As of Thursday night, Mom was placed in the hands of Hospice on continual

>> care. She is on oxygen to ease her respiration. She stopped taking food and

>> liquids after lunch on Thursday. Because of her dramatic weight loss, she

>> has an issue with skin breakdown on her tailbone but it is being monitored

>> closely. A very small amount of morphine is given during dressing changes

>> on that area to ease any discomfort. She seems to be resting comfortably.

>> We believe she still has an awareness because she seems to be trying to

>> speak when she hears us talking. All of the hard decisions have been made.

>>

>> I am so grateful for all who surround her now. She is loved, protected and

>> comforted.

>>

>> Best wishes,

>> Lynn in Florida

>>

>> 

>>

>

>

>

>--

>Kate Knapp, OIT

>University of Minnesota

>

>

>You were born with certain gifts and talents.

>In kindergarten you were taught to share.

>The world needs all of the gifts it can get.

>Don’t be shy.

>

>

>

[Guest guest]

Dear Kate,

 I was so sorry to read about your Mom, but I'm glad that her loved ones were

nearby when she passed. 

I wish you many more years of good health.

Sending hugs from NY,

Helene

>________________________________

>

>To: LBDcaregivers

>Sent: Thursday, March 1, 2012 12:19 PM

>Subject: Re: Update on my mother

>

>Oh, .  My heart breaks for you.  I am also single, never married and

>no children.  Mom's neuropsych told us that the AZ her father was diagnosed

>with in the '60s was probably LBD like Mom's.  Now her brother can't hide

>his dementia anymore.  I've strongly urged my aunt and cousins to take him

>to Mayo (they live close by) and try to see Dr. Boeve.  Right now, my aunt

>says his diagnosis is " dementia " but doesn't know what kind.  Until I spoke

>at length with her and my cousin about Mom's LBD, I don't think she

>realized that it mattered what kind.  (And she's a very well-educated

>woman, a former professor.)  This seems to be traveling through my mother's

>family and there's a very strong chance that it will reach me.  So, as a

>single person, I am making sure my long term care insurance is kept up and

>am, at 59, looking at starting the senior housing cycle.  I think if I

>lived in a building with young people I'd be that fussy old lady down the

>hall.  Two nephews and one niece have promised to take care of me should I

>need it, but to be honest they are really going to have their hands full

>with their own parents.

>

>I haven't been on for a few weeks.  That's because my mom passed on

>February 9th.  We were all very lucky and blessed.  Your description of

>what your mom is going through, , is a state Mom hadn't reached yet,

>but I think she was getting close.  She had lost so much already - words,

>walking or even standing, needed help with toileting, bathing, eating,

>etc.  Yet she could still get out on occasion to spend time with her

>family.  We'd had a wonderful day just the week before.  Mom was diagnosed

>with pneumonia on Tuesday and passed Thursday night, very gently and with

>family holding her.  Except for nebulizer treatments on Tuesday to make her

>comfortable, the pneumonia was not treated at all.  No antibiotics, even.

>Everyone involved saw this as Mom's chance to let go and that's what she

>did.  It was a great blessing and one of the most beautiful experiences of

>my life.

>

>Lynn, Judy, and everyone else going through the end stages (or any stage),

>you are always in my thoughts.  Medicaid applications do take a long time.

>Mom's took 6 months for approval, but she was already in the NH and they

>were very patient about payment.  I don't know what we would have done if

>things had been otherwise.  Keep hounding social services.  It's so easy

>for applications to drop to the bottom of the pile.

>

>I may not write as often as I had before, but believe me that this doesn't

>end with a loved one's passing.  There are so many things to settle!  (For

>what may be the first time in my life, I am really appreciating lawyers,

>especially ours who hasn't charged me for the couple of phone calls I've

>made seeking advice.)  Even if I don't write often, know that you are all

>in my thoughts.

>

>Kate Knapp

>

>

>

>> **

>>

>>

>> As of Thursday night, Mom was placed in the hands of Hospice on continual

>> care. She is on oxygen to ease her respiration. She stopped taking food and

>> liquids after lunch on Thursday. Because of her dramatic weight loss, she

>> has an issue with skin breakdown on her tailbone but it is being monitored

>> closely. A very small amount of morphine is given during dressing changes

>> on that area to ease any discomfort. She seems to be resting comfortably.

>> We believe she still has an awareness because she seems to be trying to

>> speak when she hears us talking. All of the hard decisions have been made.

>>

>> I am so grateful for all who surround her now. She is loved, protected and

>> comforted.

>>

>> Best wishes,

>> Lynn in Florida

>>

>> 

>>

>

>

>

>--

>Kate Knapp, OIT

>University of Minnesota

>

>

>You were born with certain gifts and talents.

>In kindergarten you were taught to share.

>The world needs all of the gifts it can get.

>Don’t be shy.

>

>

>

[Guest guest]

Dear Kate,

 I was so sorry to read about your Mom, but I'm glad that her loved ones were

nearby when she passed. 

I wish you many more years of good health.

Sending hugs from NY,

Helene

>________________________________

>

>To: LBDcaregivers

>Sent: Thursday, March 1, 2012 12:19 PM

>Subject: Re: Update on my mother

>

>Oh, .  My heart breaks for you.  I am also single, never married and

>no children.  Mom's neuropsych told us that the AZ her father was diagnosed

>with in the '60s was probably LBD like Mom's.  Now her brother can't hide

>his dementia anymore.  I've strongly urged my aunt and cousins to take him

>to Mayo (they live close by) and try to see Dr. Boeve.  Right now, my aunt

>says his diagnosis is " dementia " but doesn't know what kind.  Until I spoke

>at length with her and my cousin about Mom's LBD, I don't think she

>realized that it mattered what kind.  (And she's a very well-educated

>woman, a former professor.)  This seems to be traveling through my mother's

>family and there's a very strong chance that it will reach me.  So, as a

>single person, I am making sure my long term care insurance is kept up and

>am, at 59, looking at starting the senior housing cycle.  I think if I

>lived in a building with young people I'd be that fussy old lady down the

>hall.  Two nephews and one niece have promised to take care of me should I

>need it, but to be honest they are really going to have their hands full

>with their own parents.

>

>I haven't been on for a few weeks.  That's because my mom passed on

>February 9th.  We were all very lucky and blessed.  Your description of

>what your mom is going through, , is a state Mom hadn't reached yet,

>but I think she was getting close.  She had lost so much already - words,

>walking or even standing, needed help with toileting, bathing, eating,

>etc.  Yet she could still get out on occasion to spend time with her

>family.  We'd had a wonderful day just the week before.  Mom was diagnosed

>with pneumonia on Tuesday and passed Thursday night, very gently and with

>family holding her.  Except for nebulizer treatments on Tuesday to make her

>comfortable, the pneumonia was not treated at all.  No antibiotics, even.

>Everyone involved saw this as Mom's chance to let go and that's what she

>did.  It was a great blessing and one of the most beautiful experiences of

>my life.

>

>Lynn, Judy, and everyone else going through the end stages (or any stage),

>you are always in my thoughts.  Medicaid applications do take a long time.

>Mom's took 6 months for approval, but she was already in the NH and they

>were very patient about payment.  I don't know what we would have done if

>things had been otherwise.  Keep hounding social services.  It's so easy

>for applications to drop to the bottom of the pile.

>

>I may not write as often as I had before, but believe me that this doesn't

>end with a loved one's passing.  There are so many things to settle!  (For

>what may be the first time in my life, I am really appreciating lawyers,

>especially ours who hasn't charged me for the couple of phone calls I've

>made seeking advice.)  Even if I don't write often, know that you are all

>in my thoughts.

>

>Kate Knapp

>

>

>

>> **

>>

>>

>> As of Thursday night, Mom was placed in the hands of Hospice on continual

>> care. She is on oxygen to ease her respiration. She stopped taking food and

>> liquids after lunch on Thursday. Because of her dramatic weight loss, she

>> has an issue with skin breakdown on her tailbone but it is being monitored

>> closely. A very small amount of morphine is given during dressing changes

>> on that area to ease any discomfort. She seems to be resting comfortably.

>> We believe she still has an awareness because she seems to be trying to

>> speak when she hears us talking. All of the hard decisions have been made.

>>

>> I am so grateful for all who surround her now. She is loved, protected and

>> comforted.

>>

>> Best wishes,

>> Lynn in Florida

>>

>> 

>>

>

>

>

>--

>Kate Knapp, OIT

>University of Minnesota

>

>

>You were born with certain gifts and talents.

>In kindergarten you were taught to share.

>The world needs all of the gifts it can get.

>Don’t be shy.

>

>

>