Re: Judy/ What stage is this in LBD ?

[Guest guest]

Hi Judy,

Has your mom been put on any new medications? Just asking because my husband

would act non-responsive on some medications. Sometimes Hospice gives them

medications to calm them or relax them. Are you aware of any medications that

may be different than what she has been taking? Have you asked Hospice if they

are giving her anything different?

Hospice came to help with my husband after an ugly Sepsis attack and hospital

stay. They thought he was in pain, so started giving him Morphine and he became

non-responsive, but I knew his pain look and it was his arthritis in his knee

that was bothering him and I would just rub a little cream on his leg for

arthritis and the pain look would go away, so I had them stop the Morphine and

he became responsive again. He bounced back to himself and Hospice left after

that. Some years later before he died I had Hospice back. It can be something

as simple as a change of medications. If it's not that, sometimes they just

bounce back on their own. One day can be so much different from another.

I hope it is just something going on for the short term.

Jan Colello

Husband, Jim, dx w/LBD Oct. 2003, but had LBD symptoms in 2000.

Deceased, January 22, 2011

 

 

 

>

>

> 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]

Hi and friends

Thank you so much for hearing me and answering my

Post! The answer is no new meds at all! There is annealed

Hospice box stored in the refrigerator and sealed! We have had no need to use

the Meds in the box! Your insight makes good

Sense... I more inclined to believe that this is Another stage of

The disease ! I know from this board that the LBD process is unpredictable and

not. One size fits all...

Nevertheless before one Dies of the disease or complications from it I wonder of

The individual naturally becomes less responsive - mom seems not Present, vacant

- it makes me sad that I can't reach her!!

In moms case it's been a steady decline.... Did your husband or others in

the group's lo spend any of the last part of the disseas in this open eyes

comatose like state? I'm not yThere everyday - but her caregiver has

seen this vacant and stll affect as

Well! How long can someone survive like this!!!!????

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@...

>

> Hi Judy,

> Has your mom been put on any new medications? Just asking because my husband

would act non-responsive on some medications. Sometimes Hospice gives them

medications to calm them or relax them. Are you aware of any medications that

may be different than what she has been taking? Have you asked Hospice if they

are giving her anything different?

> Hospice came to help with my husband after an ugly Sepsis attack and hospital

stay. They thought he was in pain, so started giving him Morphine and he became

non-responsive, but I knew his pain look and it was his arthritis in his knee

that was bothering him and I would just rub a little cream on his leg for

arthritis and the pain look would go away, so I had them stop the Morphine and

he became responsive again. He bounced back to himself and Hospice left after

that. Some years later before he died I had Hospice back. It can be something as

simple as a change of medications. If it's not that, sometimes they just bounce

back on their own. One day can be so much different from another.

> I hope it is just something going on for the short term.

> Jan Colello

> Husband, Jim, dx w/LBD Oct. 2003, but had LBD symptoms in 2000.

> Deceased, January 22, 2011

>

>

>

>

> >

> >

> > 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]

Judy,

Just wondering if it's possible that you're seeing more intense Parkinsonian

symptoms? My father has not had a lot of those symptoms other than the shuffle

and slight tremor, but I know someone with Parkinson's in the later stages and

you see just what you're describing. Just a thought.

Lori

Sent from my Samsung Captivate on AT & T

Judy wrote:

>Hi and friends

>

>Thank you so much for hearing me and answering my

>Post! The answer is no new meds at all! There is annealed

>Hospice box stored in the refrigerator and sealed! We have had no need to use

the Meds in the box! Your insight makes good

>Sense... I more inclined to believe that this is Another stage of

>The disease ! I know from this board that the LBD process is unpredictable and

not. One size fits all...

>

>Nevertheless before one Dies of the disease or complications from it I wonder

of The individual naturally becomes less responsive - mom seems not Present,

vacant - it makes me sad that I can't reach her!!

>

>In moms case it's been a steady decline.... Did your husband or others in

the group's lo spend any of the last part of the disseas in this open eyes

comatose like state? I'm not yThere everyday - but her caregiver has

seen this vacant and stll affect as

>Well! How long can someone survive like this!!!!????

>

>

>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@...

>

>

>

>

>>

>> Hi Judy,

>> Has your mom been put on any new medications? Just asking because my husband

would act non-responsive on some medications. Sometimes Hospice gives them

medications to calm them or relax them. Are you aware of any medications that

may be different than what she has been taking? Have you asked Hospice if they

are giving her anything different?

>> Hospice came to help with my husband after an ugly Sepsis attack and hospital

stay. They thought he was in pain, so started giving him Morphine and he became

non-responsive, but I knew his pain look and it was his arthritis in his knee

that was bothering him and I would just rub a little cream on his leg for

arthritis and the pain look would go away, so I had them stop the Morphine and

he became responsive again. He bounced back to himself and Hospice left after

that. Some years later before he died I had Hospice back. It can be something as

simple as a change of medications. If it's not that, sometimes they just bounce

back on their own. One day can be so much different from another.

>> I hope it is just something going on for the short term.

>> Jan Colello

>> Husband, Jim, dx w/LBD Oct. 2003, but had LBD symptoms in 2000.

>> Deceased, January 22, 2011

>>

>>

>>

>>

>> >

>> >

>> > 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]

Judy, my husband at the end of LBD got Aspiration Pneumonia and a UTI all at

once. He stated in his Health Directive when he was of sound mind and in good

health that he did not want any antibiotics at the end or any life saving

tubes; like a feeding tube, if he became terminally ill and the doctor respected

that request. My husband told me and his children that he wanted us to abide by

that request too when the time came, so we all had to respect his wishes. It was

very hard to do, since in my selfishness, I wanted to save him, but knew there

was nothing I could do. When he was tested for Aspiration Pneumonia and a UTI

the doctor could give my husband an oral antibiotic, but my husband was no

longer able to swallow and refused food or the antibiotic. It was at that point

that the doctor would not do an I V antibiotic to save him only to bring him

back to not being able to swallow, so what was the point. My husband made it to

the end of the disease

and could no longer swallow. Not even pureed food. He starved for 6 days and

died of starvation, Aspiration Pneumonia, and a UTI. So, his death was different

at the end of life then some here. The only time my husband was not responsive

was when he was given a medication that he reacted to or when he fainted,

which was 1 to 2 times a month. He was still responsive with me at the end, he

said, " Bah " to me meaning  " Bye " and had his eyes open looking at me. 

You said in your last post that your mother was still able to eat and would eat

a little. I don't know, if that is a good sign. Who knows anything with LBD,

everyone is so different.

Jan Colello

Husband, Jim, dx w/LBD/PDD Oct. 2003, but had LBD symptoms in 2000 was dx w/

Parkinsons in 90's.

Deceased, January 22, 2011

 

 

 

> >

> >

> > 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.

> > >

> >

> >