What stage is this in LBD ?

[Guest guest]

Dear friends

An update and question on my dear mother! We have home hospice now since June

27- just when I thought things could not get worse - mom now doesn't only not

recognize me but is completely non responsive - she makes no eye contact and

stares at the tv and wont look anyone in the eye!

She is not anxious or in any pain - wide eyed but not there- she males no sounds

at all and is quite still - yet she can put a cup of water to her mouth and

drink and is still eating soft foods ! Can her hearing be effected now?

This vacant shell of my mom is shocking - until last week she was still taking

my hand and making eye contact ? Is this considered the last stage of the LBD

journey ? Has anyone else experienced this with a loved one?

Thanks for any and all help at this scary time..,

Best,

Judy

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Direct Cell-

Email- Jrstr@...

> Dot, so sorry to hear of your husband's passing, and just so recently. you

took care of your mom, and now your dad. you are one of the saints here on

earth. God has given you so much strength. i guess we won't understand until we

get to heaven. perhaps i will meet you there. my wife was very slow walking

today (LBD) -was glad to have caregiver for 4 hrs. it adds up money-wise as it

is out-of-pocket. i went for a donut hike with 2 neighbors- we burned off less

than we ate. it is evening now and i am back to that weird caregiving feeling.

you know the one i mean. i take an anti-depressant but it isn't a miracle pill.

i will let you go now. please take care of yourself. you deserve a jelly donut.

gary

>

>

>

>

> Subject: Re: a day in my life

> To: LBDcaregivers

> Date: Tuesday, August 2, 2011, 6:44 AM

>

>

>

> Hi ,

> Thank you for posting this for all of us caregivers that go it alone! I've

been caring for my Dad for 3 1/2 yrs., even though I have other siblings and

it's like you say. All night long being awake (in my case depression is an issue

and it may be in yours too) being housebound with your loved one is also

difficult to deal with. I replaced my work life over nine years ago ( I also

took care of my mom with Alzheimers) with the internet, gardening, fixing things

in the house, planning trips to take later in life, etc. I guess you could say I

just dream about what could be. It's sad when your spouse has an illness that

separates you. My husband just passed away on 7-17 from cancer so I understand

the grieving process as I'm still in it. I'm sure you also suffer from that

feeling of being cheated out of growing old together. It's never like we

planned, is it? Keep trying to visit your neighbors though. The simple face to

face conversations and visits can

> really make a day. Please remember, from me to you and all of us caregivers, I

think we are all amazing!

> Dot

>

>

> >

> > i thought i would share a day as caregiver, with you. i hear a lot about

dying and the patients, inflicted, etc. maybe this will ring true in some of

your ears about caregiving- that's the support we are trying to give to each

other. i woke up this morning feeling bad again about not being able to get up

in time to get me and wife (59-LBD apparently) to church. it's too much for ME.

i have to dress her, potty her, feed her and then me also. heck with that- i'm

too tired. i wish we would both just not wake up together. keep hoping for that

end of world mayan 2012 thing, or that rapture before tribulation my pastor

talks about, or maybe a miracle mis-diagonosis thing. we go again in oct. i am

in tribulation already so how is that going to work out? i read about the

grieving process: denial, anger, bargaining, acceptance. i thought that was

suppose to go in order but i go thru them every day, except acceptance. once i

accept suffering, illness,corruption,

> inhumanity-i will have lost. i sleep poorly now (how about you?) i had

headachs last nite,bad dreams, couldn't sleep. can't solve this problem. now i

think i am clenching my teeth/jaws together as i sleep..as if i am bracing for a

crash- no wonder i had a headache. finally got up, 11 am and did some yardwork(i

enjoy). highlite of the day was eating: wife likes waffles in morning, small

lunch and hotdogs for dinner. i do all the shopping, cooking, laundry now (sound

familiar?-especially to you men) sent my brother an e-mail and put car back in

garage from driveway (exciting stuff-didn't even leave the house today). was

going to take a walk down to my neighbors but again said what the heck. tomorrow

i will try harder (going on 1 1/2 to 2 years now) I hope my being candid about

caregiving gives someone hope that you are not alone out there- i am here with

you my fellow givers.

> >

>

>

[Guest guest]

Dear Judy,

So sorry to hear that your mom is now in hospice. Your mom may come out of

this since she's still eating.. I have experienced these same things but

with a loved one who had stopped eating and was only drinking water. At

first it was very upsetting, like you describe. I went on the internet and

talked with nurses. They assured me this can be a very natural, pain-free

way of passing. And my beloved friend died with her eyes open, and

peaceful. We felt a sense of euphoria at the time of her passing.

Doesn't seem possible does it?

These are only my beliefs about passing, but the hospice book we received

talked about this too. If these beliefs aren't for you I apologize, but it

makes the passing bearable. We only see our loved one letting go of the

physical body, but lots more is going on. They are in the process of

" going home " or whatever your belief may be in the after life. (And it is

wonderful for them, but oh so hard for us.) So she may not be making eye

contact or holding your hand but she is aware of you at some level. Over

the course of my sweet friend's passing I mostly felt the devastation at

losing her. But at the moment of her passing I was filled with this

immense love in my heart for her, so large I couldn't contain it. I think

it was God's way of telling me " This is what it's about! " And I am so

grateful for her presence in my life.

I've only been on this website a short time so I don't know much about you

and your mom, but I can tell how much you love her and your dedication to

her.

Marcie

_____

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of Judy

Sent: Tuesday, August 02, 2011 10:41 PM

To: LBDcaregivers

Subject: What stage is this in LBD ?

Dear friends

An update and question on my dear mother! We have home hospice now since

June 27- just when I thought things could not get worse - mom now doesn't

only not recognize me but is completely non responsive - she makes no eye

contact and stares at the tv and wont look anyone in the eye!

She is not anxious or in any pain - wide eyed but not there- she males no

sounds at all and is quite still - yet she can put a cup of water to her

mouth and drink and is still eating soft foods ! Can her hearing be effected

now?

This vacant shell of my mom is shocking - until last week she was still

taking my hand and making eye contact ? Is this considered the last stage of

the LBD journey ? Has anyone else experienced this with a loved one?

Thanks for any and all help at this scary time..,

Best,

Judy

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Direct Cell-

Email- Jrstr@... <mailto:Jrstr%40email.Phoenix.edu>

On Aug 2, 2011, at 9:35 PM, gary dale <gary.s.dale@...

<mailto:gary.s.dale%40sbcglobal.net> > wrote:

> Dot, so sorry to hear of your husband's passing, and just so recently. you

took care of your mom, and now your dad. you are one of the saints here on

earth. God has given you so much strength. i guess we won't understand until

we get to heaven. perhaps i will meet you there. my wife was very slow

walking today (LBD) -was glad to have caregiver for 4 hrs. it adds up

money-wise as it is out-of-pocket. i went for a donut hike with 2 neighbors-

we burned off less than we ate. it is evening now and i am back to that

weird caregiving feeling. you know the one i mean. i take an anti-depressant

but it isn't a miracle pill. i will let you go now. please take care of

yourself. you deserve a jelly donut. gary

>

>

>

> From: Dot <dedgekko@... <mailto:dedgekko%40verizon.net> >

> Subject: Re: a day in my life

> To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

> Date: Tuesday, August 2, 2011, 6:44 AM

>

>

>

> Hi ,

> Thank you for posting this for all of us caregivers that go it alone! I've

been caring for my Dad for 3 1/2 yrs., even though I have other siblings and

it's like you say. All night long being awake (in my case depression is an

issue and it may be in yours too) being housebound with your loved one is

also difficult to deal with. I replaced my work life over nine years ago ( I

also took care of my mom with Alzheimers) with the internet, gardening,

fixing things in the house, planning trips to take later in life, etc. I

guess you could say I just dream about what could be. It's sad when your

spouse has an illness that separates you. My husband just passed away on

7-17 from cancer so I understand the grieving process as I'm still in it.

I'm sure you also suffer from that feeling of being cheated out of growing

old together. It's never like we planned, is it? Keep trying to visit your

neighbors though. The simple face to face conversations and visits can

> really make a day. Please remember, from me to you and all of us

caregivers, I think we are all amazing!

> Dot

>

>

> >

> > i thought i would share a day as caregiver, with you. i hear a lot about

dying and the patients, inflicted, etc. maybe this will ring true in some of

your ears about caregiving- that's the support we are trying to give to each

other. i woke up this morning feeling bad again about not being able to get

up in time to get me and wife (59-LBD apparently) to church. it's too much

for ME. i have to dress her, potty her, feed her and then me also. heck with

that- i'm too tired. i wish we would both just not wake up together. keep

hoping for that end of world mayan 2012 thing, or that rapture before

tribulation my pastor talks about, or maybe a miracle mis-diagonosis thing.

we go again in oct. i am in tribulation already so how is that going to work

out? i read about the grieving process: denial, anger, bargaining,

acceptance. i thought that was suppose to go in order but i go thru them

every day, except acceptance. once i accept suffering, illness,corruption,

> inhumanity-i will have lost. i sleep poorly now (how about you?) i had

headachs last nite,bad dreams, couldn't sleep. can't solve this problem. now

i think i am clenching my teeth/jaws together as i sleep..as if i am bracing

for a crash- no wonder i had a headache. finally got up, 11 am and did some

yardwork(i enjoy). highlite of the day was eating: wife likes waffles in

morning, small lunch and hotdogs for dinner. i do all the shopping, cooking,

laundry now (sound familiar?-especially to you men) sent my brother an

e-mail and put car back in garage from driveway (exciting stuff-didn't even

leave the house today). was going to take a walk down to my neighbors but

again said what the heck. tomorrow i will try harder (going on 1 1/2 to 2

years now) I hope my being candid about caregiving gives someone hope that

you are not alone out there- i am here with you my fellow givers.

> >

>

>

[Guest guest]

Wow Marcie

Thank you - thank you ! Your words went straight to my heart- It's like you are

inside my physche and can read and get where I am at! I know something is right

on target when it touches me so deeply! All I could do is nod while reading your

post and weep -the tears were mixed with tear of relief that this LBD might come

to an end letting moms struggle to be over and grieving tears becausebas u

mentioned watching a loved one go is also having to accept that my adoring

unconditionally loving mother would one day not be here anymore,

Over the last many years I have been caring for mom I never cried - that is

until the last few months - and I think being caring, loving but stoic was a

protective way to keep my head on straight so

That i would be able to manage the many variables that needed to get done in

order to keep mom at home comfortably and safely - paying all the bills,

managing the 24/7 help and all the doctors, meds, commode, food, air mattreSS,

construction on the apartment to allow for mom to remain home to name a few of

the ongoing duties had to get done - and although my brother has turned out to

be a great support - the fact remains that when i signed my name to take the

role PF trustee and surrogate health care proxy I would need to follow through

on my word -

What strikes me now and I wonder if Marcie and all the other angels in this

group that we speak about the stages of LBD our loves ones are progressing

through while being blinded by the stages we the caregivers are also in! Marcies

post about her experience with a loves one and his /her later journey through

the disease showed me that I too need to allow myself now to embrace the stage

of " acceptance " instead of fighting it ! For a long time I noticed the decline

in mom as having the rhythm of one step forward and 2 steps back - and perhaps

this is still happening - but I was mostly pleSed when the dance would take the

back steps - since there was still interaction mom - now I have reached time

and place where I fully understand what Marcie describes as euphoria when her

loved one finally passed!

I Have this very clear vision my dad sitting beside a beautifully draped table

for two next to the moon eagerly awaiting mom to arrive - what I am imagining

now is mom Preparing her best suit and applying lipstick and a spritz of perfume

as she prepares to gracefully Dane her way to meet him! The image of my now

crippled and broken mother somehow shedding the ugly Ravages of the dissease and

emerging as the woman I once knew so vibrant and shining brings me peace for

her - while as Marcie points out it is mixed with the sharp pain for our final

goodbye here on earth!! It is precisely these polar opposite emotions that are

so unbearable - and having all of your support and understanding gives me great

comfort !!

Please forgive me for rambling on - and once more thank you for giving me a

place to put these thoughts down - the task is less heavy having all of you to

help carry it!

Xoxoxo

Judy

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Direct Cell-

Email- Jrstr@...

> Dear Judy,

>

> So sorry to hear that your mom is now in hospice. Your mom may come out of

> this since she's still eating.. I have experienced these same things but

> with a loved one who had stopped eating and was only drinking water. At

> first it was very upsetting, like you describe. I went on the internet and

> talked with nurses. They assured me this can be a very natural, pain-free

> way of passing. And my beloved friend died with her eyes open, and

> peaceful. We felt a sense of euphoria at the time of her passing.

> Doesn't seem possible does it?

>

> These are only my beliefs about passing, but the hospice book we received

> talked about this too. If these beliefs aren't for you I apologize, but it

> makes the passing bearable. We only see our loved one letting go of the

> physical body, but lots more is going on. They are in the process of

> " going home " or whatever your belief may be in the after life. (And it is

> wonderful for them, but oh so hard for us.) So she may not be making eye

> contact or holding your hand but she is aware of you at some level. Over

> the course of my sweet friend's passing I mostly felt the devastation at

> losing her. But at the moment of her passing I was filled with this

> immense love in my heart for her, so large I couldn't contain it. I think

> it was God's way of telling me " This is what it's about! " And I am so

> grateful for her presence in my life.

>

> I've only been on this website a short time so I don't know much about you

> and your mom, but I can tell how much you love her and your dedication to

> her.

>

> Marcie

>

> _____

>

> From: LBDcaregivers [mailto:LBDcaregivers ]

> On Behalf Of Judy

> Sent: Tuesday, August 02, 2011 10:41 PM

> To: LBDcaregivers

> Subject: What stage is this in LBD ?

>

> Dear friends

>

> An update and question on my dear mother! We have home hospice now since

> June 27- just when I thought things could not get worse - mom now doesn't

> only not recognize me but is completely non responsive - she makes no eye

> contact and stares at the tv and wont look anyone in the eye!

>

> She is not anxious or in any pain - wide eyed but not there- she males no

> sounds at all and is quite still - yet she can put a cup of water to her

> mouth and drink and is still eating soft foods ! Can her hearing be effected

> now?

>

> This vacant shell of my mom is shocking - until last week she was still

> taking my hand and making eye contact ? Is this considered the last stage of

> the LBD journey ? Has anyone else experienced this with a loved one?

>

> Thanks for any and all help at this scary time..,

>

> Best,

>

> Judy

>

> Judy R. Strauss LMSW PhD

>

> Lead Faculty

> University of Phoenix

>

> Jersey City Campus

> 100 Town Square Place

> |Jersey City, NJ 07310

>

> Direct Cell-

> Email- Jrstr@... <mailto:Jrstr%40email.Phoenix.edu>

>

> On Aug 2, 2011, at 9:35 PM, gary dale <gary.s.dale@...

> <mailto:gary.s.dale%40sbcglobal.net> > wrote:

>

> > Dot, so sorry to hear of your husband's passing, and just so recently. you

> took care of your mom, and now your dad. you are one of the saints here on

> earth. God has given you so much strength. i guess we won't understand until

> we get to heaven. perhaps i will meet you there. my wife was very slow

> walking today (LBD) -was glad to have caregiver for 4 hrs. it adds up

> money-wise as it is out-of-pocket. i went for a donut hike with 2 neighbors-

> we burned off less than we ate. it is evening now and i am back to that

> weird caregiving feeling. you know the one i mean. i take an anti-depressant

> but it isn't a miracle pill. i will let you go now. please take care of

> yourself. you deserve a jelly donut. gary

> >

> >

> >

> > From: Dot <dedgekko@... <mailto:dedgekko%40verizon.net> >

> > Subject: Re: a day in my life

> > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

>

> > Date: Tuesday, August 2, 2011, 6:44 AM

> >

> >

> >

> > Hi ,

> > Thank you for posting this for all of us caregivers that go it alone! I've

> been caring for my Dad for 3 1/2 yrs., even though I have other siblings and

> it's like you say. All night long being awake (in my case depression is an

> issue and it may be in yours too) being housebound with your loved one is

> also difficult to deal with. I replaced my work life over nine years ago ( I

> also took care of my mom with Alzheimers) with the internet, gardening,

> fixing things in the house, planning trips to take later in life, etc. I

> guess you could say I just dream about what could be. It's sad when your

> spouse has an illness that separates you. My husband just passed away on

> 7-17 from cancer so I understand the grieving process as I'm still in it.

> I'm sure you also suffer from that feeling of being cheated out of growing

> old together. It's never like we planned, is it? Keep trying to visit your

> neighbors though. The simple face to face conversations and visits can

> > really make a day. Please remember, from me to you and all of us

> caregivers, I think we are all amazing!

> > Dot

> >

> >

> > >

> > > i thought i would share a day as caregiver, with you. i hear a lot about

> dying and the patients, inflicted, etc. maybe this will ring true in some of

> your ears about caregiving- that's the support we are trying to give to each

> other. i woke up this morning feeling bad again about not being able to get

> up in time to get me and wife (59-LBD apparently) to church. it's too much

> for ME. i have to dress her, potty her, feed her and then me also. heck with

> that- i'm too tired. i wish we would both just not wake up together. keep

> hoping for that end of world mayan 2012 thing, or that rapture before

> tribulation my pastor talks about, or maybe a miracle mis-diagonosis thing.

> we go again in oct. i am in tribulation already so how is that going to work

> out? i read about the grieving process: denial, anger, bargaining,

> acceptance. i thought that was suppose to go in order but i go thru them

> every day, except acceptance. once i accept suffering, illness,corruption,

> > inhumanity-i will have lost. i sleep poorly now (how about you?) i had

> headachs last nite,bad dreams, couldn't sleep. can't solve this problem. now

> i think i am clenching my teeth/jaws together as i sleep..as if i am bracing

> for a crash- no wonder i had a headache. finally got up, 11 am and did some

> yardwork(i enjoy). highlite of the day was eating: wife likes waffles in

> morning, small lunch and hotdogs for dinner. i do all the shopping, cooking,

> laundry now (sound familiar?-especially to you men) sent my brother an

> e-mail and put car back in garage from driveway (exciting stuff-didn't even

> leave the house today). was going to take a walk down to my neighbors but

> again said what the heck. tomorrow i will try harder (going on 1 1/2 to 2

> years now) I hope my being candid about caregiving gives someone hope that

> you are not alone out there- i am here with you my fellow givers.

> > >

> >

> >

[Guest guest]

Dear Judy,

I wept also reading your e-mail. My sweet friend passed in March of this

year so it is all very near the surface for me still. Of course all my

focus is on my mom right now.

Your description of your dad waiting for your mom under the moonlight was so

uplifting. That could be my mom the way you described her. She loved her

suits and her perfume and dancing too. Maybe it's the New York connection.

This afternoon my mom's new pastor and a friend from her church held a " tea "

for my mom and some of her friends at the facility where she lives. As she

sat there as best she could - her head bent down to her chest - I couldn't

help think of her years as a model when she lived in Brooklyn. She was

such a beautiful woman, and now her body and mind are so twisted from this

terrible disease. You would never know they were the same person if you

saw how she looked as a young woman. But the afternoon was a special one

just the same. All the women looked so beautiful in their hats sitting

around the beautifully set table enjoying all the wonderful food. I

really try to take Jan's advice about " making lemonade when you're given

lemons " to heart. Like you said about embracing acceptance, it then frees

you up to make the best of what is left.

I know I'm rambling - a long day! Thanks for sharing.

Marcie

_____

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of Judy

Sent: Wednesday, August 03, 2011 1:51 PM

To: LBDcaregivers

Cc: <LBDcaregivers >

Subject: Re: What stage is this in LBD ?

Wow Marcie

Thank you - thank you ! Your words went straight to my heart- It's like you

are inside my physche and can read and get where I am at! I know something

is right on target when it touches me so deeply! All I could do is nod while

reading your post and weep -the tears were mixed with tear of relief that

this LBD might come to an end letting moms struggle to be over and grieving

tears becausebas u mentioned watching a loved one go is also having to

accept that my adoring unconditionally loving mother would one day not be

here anymore,

Over the last many years I have been caring for mom I never cried - that is

until the last few months - and I think being caring, loving but stoic was a

protective way to keep my head on straight so

That i would be able to manage the many variables that needed to get done in

order to keep mom at home comfortably and safely - paying all the bills,

managing the 24/7 help and all the doctors, meds, commode, food, air

mattreSS, construction on the apartment to allow for mom to remain home to

name a few of the ongoing duties had to get done - and although my brother

has turned out to be a great support - the fact remains that when i signed

my name to take the role PF trustee and surrogate health care proxy I would

need to follow through on my word -

What strikes me now and I wonder if Marcie and all the other angels in this

group that we speak about the stages of LBD our loves ones are progressing

through while being blinded by the stages we the caregivers are also in!

Marcies post about her experience with a loves one and his /her later

journey through the disease showed me that I too need to allow myself now to

embrace the stage of " acceptance " instead of fighting it ! For a long time I

noticed the decline in mom as having the rhythm of one step forward and 2

steps back - and perhaps this is still happening - but I was mostly pleSed

when the dance would take the back steps - since there was still interaction

mom - now I have reached time and place where I fully understand what Marcie

describes as euphoria when her loved one finally passed!

I Have this very clear vision my dad sitting beside a beautifully draped

table for two next to the moon eagerly awaiting mom to arrive - what I am

imagining now is mom Preparing her best suit and applying lipstick and a

spritz of perfume as she prepares to gracefully Dane her way to meet him!

The image of my now crippled and broken mother somehow shedding the ugly

Ravages of the dissease and emerging as the woman I once knew so vibrant and

shining brings me peace for her - while as Marcie points out it is mixed

with the sharp pain for our final goodbye here on earth!! It is precisely

these polar opposite emotions that are so unbearable - and having all of

your support and understanding gives me great comfort !!

Please forgive me for rambling on - and once more thank you for giving me a

place to put these thoughts down - the task is less heavy having all of you

to help carry it!

Xoxoxo

Judy

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Direct Cell-

Email- Jrstr@... <mailto:Jrstr%40email.Phoenix.edu>

On Aug 3, 2011, at 8:15 AM, " Marcia Bosack " <mbosack@...

<mailto:mbosack%40verizon.net> > wrote:

> Dear Judy,

>

> So sorry to hear that your mom is now in hospice. Your mom may come out of

> this since she's still eating.. I have experienced these same things but

> with a loved one who had stopped eating and was only drinking water. At

> first it was very upsetting, like you describe. I went on the internet and

> talked with nurses. They assured me this can be a very natural, pain-free

> way of passing. And my beloved friend died with her eyes open, and

> peaceful. We felt a sense of euphoria at the time of her passing.

> Doesn't seem possible does it?

>

> These are only my beliefs about passing, but the hospice book we received

> talked about this too. If these beliefs aren't for you I apologize, but it

> makes the passing bearable. We only see our loved one letting go of the

> physical body, but lots more is going on. They are in the process of

> " going home " or whatever your belief may be in the after life. (And it is

> wonderful for them, but oh so hard for us.) So she may not be making eye

> contact or holding your hand but she is aware of you at some level. Over

> the course of my sweet friend's passing I mostly felt the devastation at

> losing her. But at the moment of her passing I was filled with this

> immense love in my heart for her, so large I couldn't contain it. I think

> it was God's way of telling me " This is what it's about! " And I am so

> grateful for her presence in my life.

>

> I've only been on this website a short time so I don't know much about you

> and your mom, but I can tell how much you love her and your dedication to

> her.

>

> Marcie

>

> _____

>

> From: LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

[mailto:LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com> ]

> On Behalf Of Judy

> Sent: Tuesday, August 02, 2011 10:41 PM

> To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

> Subject: What stage is this in LBD ?

>

> Dear friends

>

> An update and question on my dear mother! We have home hospice now since

> June 27- just when I thought things could not get worse - mom now doesn't

> only not recognize me but is completely non responsive - she makes no eye

> contact and stares at the tv and wont look anyone in the eye!

>

> She is not anxious or in any pain - wide eyed but not there- she males no

> sounds at all and is quite still - yet she can put a cup of water to her

> mouth and drink and is still eating soft foods ! Can her hearing be

effected

> now?

>

> This vacant shell of my mom is shocking - until last week she was still

> taking my hand and making eye contact ? Is this considered the last stage

of

> the LBD journey ? Has anyone else experienced this with a loved one?

>

> Thanks for any and all help at this scary time..,

>

> Best,

>

> Judy

>

> Judy R. Strauss LMSW PhD

>

> Lead Faculty

> University of Phoenix

>

> Jersey City Campus

> 100 Town Square Place

> |Jersey City, NJ 07310

>

> Direct Cell-

> Email- Jrstr@... <mailto:Jrstr%40email.Phoenix.edu>

<mailto:Jrstr%40email.Phoenix.edu>

>

> On Aug 2, 2011, at 9:35 PM, gary dale <gary.s.dale@...

<mailto:gary.s.dale%40sbcglobal.net>

> <mailto:gary.s.dale%40sbcglobal.net> > wrote:

>

> > Dot, so sorry to hear of your husband's passing, and just so recently.

you

> took care of your mom, and now your dad. you are one of the saints here on

> earth. God has given you so much strength. i guess we won't understand

until

> we get to heaven. perhaps i will meet you there. my wife was very slow

> walking today (LBD) -was glad to have caregiver for 4 hrs. it adds up

> money-wise as it is out-of-pocket. i went for a donut hike with 2

neighbors-

> we burned off less than we ate. it is evening now and i am back to that

> weird caregiving feeling. you know the one i mean. i take an

anti-depressant

> but it isn't a miracle pill. i will let you go now. please take care of

> yourself. you deserve a jelly donut. gary

> >

> >

> >

> > From: Dot <dedgekko@... <mailto:dedgekko%40verizon.net>

<mailto:dedgekko%40verizon.net> >

> > Subject: Re: a day in my life

> > To: LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com>

>

> > Date: Tuesday, August 2, 2011, 6:44 AM

> >

> >

> >

> > Hi ,

> > Thank you for posting this for all of us caregivers that go it alone!

I've

> been caring for my Dad for 3 1/2 yrs., even though I have other siblings

and

> it's like you say. All night long being awake (in my case depression is an

> issue and it may be in yours too) being housebound with your loved one is

> also difficult to deal with. I replaced my work life over nine years ago (

I

> also took care of my mom with Alzheimers) with the internet, gardening,

> fixing things in the house, planning trips to take later in life, etc. I

> guess you could say I just dream about what could be. It's sad when your

> spouse has an illness that separates you. My husband just passed away on

> 7-17 from cancer so I understand the grieving process as I'm still in it.

> I'm sure you also suffer from that feeling of being cheated out of growing

> old together. It's never like we planned, is it? Keep trying to visit your

> neighbors though. The simple face to face conversations and visits can

> > really make a day. Please remember, from me to you and all of us

> caregivers, I think we are all amazing!

> > Dot

> >

> >

> > >

> > > i thought i would share a day as caregiver, with you. i hear a lot

about

> dying and the patients, inflicted, etc. maybe this will ring true in some

of

> your ears about caregiving- that's the support we are trying to give to

each

> other. i woke up this morning feeling bad again about not being able to

get

> up in time to get me and wife (59-LBD apparently) to church. it's too much

> for ME. i have to dress her, potty her, feed her and then me also. heck

with

> that- i'm too tired. i wish we would both just not wake up together. keep

> hoping for that end of world mayan 2012 thing, or that rapture before

> tribulation my pastor talks about, or maybe a miracle mis-diagonosis

thing.

> we go again in oct. i am in tribulation already so how is that going to

work

> out? i read about the grieving process: denial, anger, bargaining,

> acceptance. i thought that was suppose to go in order but i go thru them

> every day, except acceptance. once i accept suffering, illness,corruption,

> > inhumanity-i will have lost. i sleep poorly now (how about you?) i had

> headachs last nite,bad dreams, couldn't sleep. can't solve this problem.

now

> i think i am clenching my teeth/jaws together as i sleep..as if i am

bracing

> for a crash- no wonder i had a headache. finally got up, 11 am and did

some

> yardwork(i enjoy). highlite of the day was eating: wife likes waffles in

> morning, small lunch and hotdogs for dinner. i do all the shopping,

cooking,

> laundry now (sound familiar?-especially to you men) sent my brother an

> e-mail and put car back in garage from driveway (exciting stuff-didn't

even

> leave the house today). was going to take a walk down to my neighbors but

> again said what the heck. tomorrow i will try harder (going on 1 1/2 to 2

> years now) I hope my being candid about caregiving gives someone hope that

> you are not alone out there- i am here with you my fellow givers.

> > >

> >

> >

[Guest guest]

Marcia

You are such a dear and I can't believe you are

Going thru this nightmare twice!

Once again your story touched a

Chord me about the tea - and the pastor and I could

Only imagine the stooped posture you describe characteristic of this

Disease - it's wonderful that your mom

Has people around her and can still have momenta of joy and

Connection

Feel free to call me sometime - so

We can weep together .,,,,My # is

Below my signature line !

I don't know if it is allowed in the group

Forum but I Would like to email a

Picture or two of my mother as a young raving

Beauty as I would imagine your

Mom was too!! A model even -

Btw I am sending a message and prayer upstairs to

Prepare another place setting near the dance floor for

Your mom - is your dad on

The other side already!

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Direct Cell-

Email- Jrstr@...

> Dear Judy,

>

> I wept also reading your e-mail. My sweet friend passed in March of this

> year so it is all very near the surface for me still. Of course all my

> focus is on my mom right now.

>

> Your description of your dad waiting for your mom under the moonlight was so

> uplifting. That could be my mom the way you described her. She loved her

> suits and her perfume and dancing too. Maybe it's the New York connection.

>

> This afternoon my mom's new pastor and a friend from her church held a " tea "

> for my mom and some of her friends at the facility where she lives. As she

> sat there as best she could - her head bent down to her chest - I couldn't

> help think of her years as a model when she lived in Brooklyn. She was

> such a beautiful woman, and now her body and mind are so twisted from this

> terrible disease. You would never know they were the same person if you

> saw how she looked as a young woman. But the afternoon was a special one

> just the same. All the women looked so beautiful in their hats sitting

> around the beautifully set table enjoying all the wonderful food. I

> really try to take Jan's advice about " making lemonade when you're given

> lemons " to heart. Like you said about embracing acceptance, it then frees

> you up to make the best of what is left.

>

> I know I'm rambling - a long day! Thanks for sharing.

>

> Marcie

>

> _____

>

> From: LBDcaregivers [mailto:LBDcaregivers ]

> On Behalf Of Judy

> Sent: Wednesday, August 03, 2011 1:51 PM

> To: LBDcaregivers

> Cc: <LBDcaregivers >

> Subject: Re: What stage is this in LBD ?

>

> Wow Marcie

>

> Thank you - thank you ! Your words went straight to my heart- It's like you

> are inside my physche and can read and get where I am at! I know something

> is right on target when it touches me so deeply! All I could do is nod while

> reading your post and weep -the tears were mixed with tear of relief that

> this LBD might come to an end letting moms struggle to be over and grieving

> tears becausebas u mentioned watching a loved one go is also having to

> accept that my adoring unconditionally loving mother would one day not be

> here anymore,

> Over the last many years I have been caring for mom I never cried - that is

> until the last few months - and I think being caring, loving but stoic was a

> protective way to keep my head on straight so

> That i would be able to manage the many variables that needed to get done in

> order to keep mom at home comfortably and safely - paying all the bills,

> managing the 24/7 help and all the doctors, meds, commode, food, air

> mattreSS, construction on the apartment to allow for mom to remain home to

> name a few of the ongoing duties had to get done - and although my brother

> has turned out to be a great support - the fact remains that when i signed

> my name to take the role PF trustee and surrogate health care proxy I would

> need to follow through on my word -

>

> What strikes me now and I wonder if Marcie and all the other angels in this

> group that we speak about the stages of LBD our loves ones are progressing

> through while being blinded by the stages we the caregivers are also in!

> Marcies post about her experience with a loves one and his /her later

> journey through the disease showed me that I too need to allow myself now to

> embrace the stage of " acceptance " instead of fighting it ! For a long time I

> noticed the decline in mom as having the rhythm of one step forward and 2

> steps back - and perhaps this is still happening - but I was mostly pleSed

> when the dance would take the back steps - since there was still interaction

> mom - now I have reached time and place where I fully understand what Marcie

> describes as euphoria when her loved one finally passed!

> I Have this very clear vision my dad sitting beside a beautifully draped

> table for two next to the moon eagerly awaiting mom to arrive - what I am

> imagining now is mom Preparing her best suit and applying lipstick and a

> spritz of perfume as she prepares to gracefully Dane her way to meet him!

> The image of my now crippled and broken mother somehow shedding the ugly

> Ravages of the dissease and emerging as the woman I once knew so vibrant and

> shining brings me peace for her - while as Marcie points out it is mixed

> with the sharp pain for our final goodbye here on earth!! It is precisely

> these polar opposite emotions that are so unbearable - and having all of

> your support and understanding gives me great comfort !!

>

> Please forgive me for rambling on - and once more thank you for giving me a

> place to put these thoughts down - the task is less heavy having all of you

> to help carry it!

>

> Xoxoxo

>

> Judy

>

> Judy R. Strauss LMSW PhD

>

> Lead Faculty

> University of Phoenix

>

> Jersey City Campus

> 100 Town Square Place

> |Jersey City, NJ 07310

>

> Direct Cell-

> Email- Jrstr@... <mailto:Jrstr%40email.Phoenix.edu>

>

> On Aug 3, 2011, at 8:15 AM, " Marcia Bosack " <mbosack@...

> <mailto:mbosack%40verizon.net> > wrote:

>

> > Dear Judy,

> >

> > So sorry to hear that your mom is now in hospice. Your mom may come out of

> > this since she's still eating.. I have experienced these same things but

> > with a loved one who had stopped eating and was only drinking water. At

> > first it was very upsetting, like you describe. I went on the internet and

> > talked with nurses. They assured me this can be a very natural, pain-free

> > way of passing. And my beloved friend died with her eyes open, and

> > peaceful. We felt a sense of euphoria at the time of her passing.

> > Doesn't seem possible does it?

> >

> > These are only my beliefs about passing, but the hospice book we received

> > talked about this too. If these beliefs aren't for you I apologize, but it

> > makes the passing bearable. We only see our loved one letting go of the

> > physical body, but lots more is going on. They are in the process of

> > " going home " or whatever your belief may be in the after life. (And it is

> > wonderful for them, but oh so hard for us.) So she may not be making eye

> > contact or holding your hand but she is aware of you at some level. Over

> > the course of my sweet friend's passing I mostly felt the devastation at

> > losing her. But at the moment of her passing I was filled with this

> > immense love in my heart for her, so large I couldn't contain it. I think

> > it was God's way of telling me " This is what it's about! " And I am so

> > grateful for her presence in my life.

> >

> > I've only been on this website a short time so I don't know much about you

> > and your mom, but I can tell how much you love her and your dedication to

> > her.

> >

> > Marcie

> >

> > _____

> >

> > From: LBDcaregivers

> <mailto:LBDcaregivers%40yahoogroups.com>

> [mailto:LBDcaregivers

> <mailto:LBDcaregivers%40yahoogroups.com> ]

> > On Behalf Of Judy

> > Sent: Tuesday, August 02, 2011 10:41 PM

> > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

>

> > Subject: What stage is this in LBD ?

> >

> > Dear friends

> >

> > An update and question on my dear mother! We have home hospice now since

> > June 27- just when I thought things could not get worse - mom now doesn't

> > only not recognize me but is completely non responsive - she makes no eye

> > contact and stares at the tv and wont look anyone in the eye!

> >

> > She is not anxious or in any pain - wide eyed but not there- she males no

> > sounds at all and is quite still - yet she can put a cup of water to her

> > mouth and drink and is still eating soft foods ! Can her hearing be

> effected

> > now?

> >

> > This vacant shell of my mom is shocking - until last week she was still

> > taking my hand and making eye contact ? Is this considered the last stage

> of

> > the LBD journey ? Has anyone else experienced this with a loved one?

> >

> > Thanks for any and all help at this scary time..,

> >

> > Best,

> >

> > Judy

> >

> > Judy R. Strauss LMSW PhD

> >

> > Lead Faculty

> > University of Phoenix

> >

> > Jersey City Campus

> > 100 Town Square Place

> > |Jersey City, NJ 07310

> >

> > Direct Cell-

> > Email- Jrstr@... <mailto:Jrstr%40email.Phoenix.edu>

> <mailto:Jrstr%40email.Phoenix.edu>

> >

> > On Aug 2, 2011, at 9:35 PM, gary dale <gary.s.dale@...

> <mailto:gary.s.dale%40sbcglobal.net>

> > <mailto:gary.s.dale%40sbcglobal.net> > wrote:

> >

> > > Dot, so sorry to hear of your husband's passing, and just so recently.

> you

> > took care of your mom, and now your dad. you are one of the saints here on

> > earth. God has given you so much strength. i guess we won't understand

> until

> > we get to heaven. perhaps i will meet you there. my wife was very slow

> > walking today (LBD) -was glad to have caregiver for 4 hrs. it adds up

> > money-wise as it is out-of-pocket. i went for a donut hike with 2

> neighbors-

> > we burned off less than we ate. it is evening now and i am back to that

> > weird caregiving feeling. you know the one i mean. i take an

> anti-depressant

> > but it isn't a miracle pill. i will let you go now. please take care of

> > yourself. you deserve a jelly donut. gary

> > >

> > >

> > >

> > > From: Dot <dedgekko@... <mailto:dedgekko%40verizon.net>

> <mailto:dedgekko%40verizon.net> >

> > > Subject: Re: a day in my life

> > > To: LBDcaregivers

> <mailto:LBDcaregivers%40yahoogroups.com>

> <mailto:LBDcaregivers%40yahoogroups.com>

> >

> > > Date: Tuesday, August 2, 2011, 6:44 AM

> > >

> > >

> > >

> > > Hi ,

> > > Thank you for posting this for all of us caregivers that go it alone!

> I've

> > been caring for my Dad for 3 1/2 yrs., even though I have other siblings

> and

> > it's like you say. All night long being awake (in my case depression is an

> > issue and it may be in yours too) being housebound with your loved one is

> > also difficult to deal with. I replaced my work life over nine years ago (

> I

> > also took care of my mom with Alzheimers) with the internet, gardening,

> > fixing things in the house, planning trips to take later in life, etc. I

> > guess you could say I just dream about what could be. It's sad when your

> > spouse has an illness that separates you. My husband just passed away on

> > 7-17 from cancer so I understand the grieving process as I'm still in it.

> > I'm sure you also suffer from that feeling of being cheated out of growing

> > old together. It's never like we planned, is it? Keep trying to visit your

> > neighbors though. The simple face to face conversations and visits can

> > > really make a day. Please remember, from me to you and all of us

> > caregivers, I think we are all amazing!

> > > Dot

> > >

> > >

> > > >

> > > > i thought i would share a day as caregiver, with you. i hear a lot

> about

> > dying and the patients, inflicted, etc. maybe this will ring true in some

> of

> > your ears about caregiving- that's the support we are trying to give to

> each

> > other. i woke up this morning feeling bad again about not being able to

> get

> > up in time to get me and wife (59-LBD apparently) to church. it's too much

> > for ME. i have to dress her, potty her, feed her and then me also. heck

> with

> > that- i'm too tired. i wish we would both just not wake up together. keep

> > hoping for that end of world mayan 2012 thing, or that rapture before

> > tribulation my pastor talks about, or maybe a miracle mis-diagonosis

> thing.

> > we go again in oct. i am in tribulation already so how is that going to

> work

> > out? i read about the grieving process: denial, anger, bargaining,

> > acceptance. i thought that was suppose to go in order but i go thru them

> > every day, except acceptance. once i accept suffering, illness,corruption,

> > > inhumanity-i will have lost. i sleep poorly now (how about you?) i had

> > headachs last nite,bad dreams, couldn't sleep. can't solve this problem.

> now

> > i think i am clenching my teeth/jaws together as i sleep..as if i am

> bracing

> > for a crash- no wonder i had a headache. finally got up, 11 am and did

> some

> > yardwork(i enjoy). highlite of the day was eating: wife likes waffles in

> > morning, small lunch and hotdogs for dinner. i do all the shopping,

> cooking,

> > laundry now (sound familiar?-especially to you men) sent my brother an

> > e-mail and put car back in garage from driveway (exciting stuff-didn't

> even

> > leave the house today). was going to take a walk down to my neighbors but

> > again said what the heck. tomorrow i will try harder (going on 1 1/2 to 2

> > years now) I hope my being candid about caregiving gives someone hope that

> > you are not alone out there- i am here with you my fellow givers.

> > > >

> > >

> > >

[Guest guest]

Judy, we have a photo section on this forum where it is always nice to actually

see family who share here. Just click on Photos in the list of threads

available. Let us know when you do post.

>

> Marcia

>

> You are such a dear and I can't believe you are

> Going thru this nightmare twice!

>

> Once again your story touched a

> Chord me about the tea - and the pastor and I could

> Only imagine the stooped posture you describe characteristic of this

> Disease - it's wonderful that your mom

> Has people around her and can still have momenta of joy and

> Connection

>

> Feel free to call me sometime - so

> We can weep together .,,,,My # is

> Below my signature line !

>

> I don't know if it is allowed in the group

> Forum but I Would like to email a

> Picture or two of my mother as a young raving

> Beauty as I would imagine your

> Mom was too!! A model even -

>

> Btw I am sending a message and prayer upstairs to

> Prepare another place setting near the dance floor for

> Your mom - is your dad on

> The other side already!

>

> Judy R. Strauss LMSW PhD

>

> Lead Faculty

> University of Phoenix

>

> Jersey City Campus

> 100 Town Square Place

> |Jersey City, NJ 07310

>

> Direct Cell-

> Email- Jrstr@...

>