new member

[Guest guest]

,

 

Has your mom accepted that your dad has LBD?  I wonder if you can get her to

read literature/information about the disease.  There's a lot of information

out there.  I go to the Lewy Body Dementia Association and Mayo Clinic on the

web for the information.  Do you have a support group in your area for LBD?  

Unfortunately, I do not for my area.   I hate that your family is going

through this horrific disease that robs those that have it of a peaceful

future.   My dad has it--mom is the caregiver.  I am called in to assist at

times when I can.  My dad is older than yours and is not able to roam around

outside the house.  You're family are in my thoughts and prayers.  Keep us

updated on your situation. God bless.

Pamela Hutchins 

________________________________

To: LBDcaregivers

Sent: Thursday, March 1, 2012 3:19 PM

Subject: new member

 

hello all, I'm . My dad was diagnosed with LBD after becoming

increasingly paranoid & hallucinating.

He was on every drug LBD patients aren't supposed to take until we found a

wonderful neurologist at UNC that diagnosed his LBD. He has recently (earlier

this week) slipped back into the extreme paranoia/hallucinations and we're not

sure if it's him not taking his pills (my mother doesn't always watch him) or if

the meds just aren't holding him. He was just started on heavy doses of

seraquil (10 pills a day!) to combat the paranoia & hallucinations but it's not

helping yet.

I think one of my parent's main issues is their age gap, my mom is 7 years

younger & still working full time while my dad has been retired for 5 years. My

dad has gotten to the point where he needs constant supervision & cannot ride in

a car without outbursts & grabbing the steering wheel so he's home alone for

8-12 hours at a time on a farm. His cognitive abilities are still very much

there but he is hallucinating 90% of the time, he can pull it together enough to

have a 2 minute conversation with someone on the phone & sound normal, but

that's about it.

I'm the closest child, I live 2 hours away but I'm also the youngest (I'm 29)

and I'm having a hard time convincing my mother to work from home & help take

care of my dad, he's calmer when she stays with him. She would rather him go

into a geriatric psych ward. It's extremely frustrating for my sister & I that

my mom is not willing to help my father in any way, claiming she's not a

caregiver. I also have two step siblings who are 20 years older than me who

live 10-12 hours away & it's hard to handle half siblings & my mother together.

His 2 sisters live 2 hours away but they don't really understand what's going on

even though they've seen him at his worst.

My parents have a horse farm & my mom's best friend lives above their garage &

helps take care of the farm and most of his paranoia & hallucinations are

directed towards her (she's opening back accounts in their name, sneaking into

the house at night trying to stab my dad with needles, stealing their new truck,

etc) and every time she comes & goes (she refuses to come into the main house

anymore) it sets him off. We do our best to not talk about anything that will

trigger his paranoia but sometimes it's out of our control (a week ago

neighborhood kids took my parent's canoe into their pond on their day off

school, which set him off)

I am hoping that the new higher levels of seraquil & the possibility of adding

clonipan will help level him out again, he did have about 8 months of being

almost back to normal after his initial diagnosis. There is no LBD support

group in Charlotte (where I live) but there is one in Greensboro, where my

parents live.

Any advice on spousal caregiving for my mom? My boyfriend & I sat her down &

went over the suggestions on interacting on the LBD website & she said she's

trying to remain calm & not yell at him or get to aggravated with him after

talking to us.

Thanks!

[Guest guest]

,

 

Has your mom accepted that your dad has LBD?  I wonder if you can get her to

read literature/information about the disease.  There's a lot of information

out there.  I go to the Lewy Body Dementia Association and Mayo Clinic on the

web for the information.  Do you have a support group in your area for LBD?  

Unfortunately, I do not for my area.   I hate that your family is going

through this horrific disease that robs those that have it of a peaceful

future.   My dad has it--mom is the caregiver.  I am called in to assist at

times when I can.  My dad is older than yours and is not able to roam around

outside the house.  You're family are in my thoughts and prayers.  Keep us

updated on your situation. God bless.

Pamela Hutchins 

________________________________

To: LBDcaregivers

Sent: Thursday, March 1, 2012 3:19 PM

Subject: new member

 

hello all, I'm . My dad was diagnosed with LBD after becoming

increasingly paranoid & hallucinating.

He was on every drug LBD patients aren't supposed to take until we found a

wonderful neurologist at UNC that diagnosed his LBD. He has recently (earlier

this week) slipped back into the extreme paranoia/hallucinations and we're not

sure if it's him not taking his pills (my mother doesn't always watch him) or if

the meds just aren't holding him. He was just started on heavy doses of

seraquil (10 pills a day!) to combat the paranoia & hallucinations but it's not

helping yet.

I think one of my parent's main issues is their age gap, my mom is 7 years

younger & still working full time while my dad has been retired for 5 years. My

dad has gotten to the point where he needs constant supervision & cannot ride in

a car without outbursts & grabbing the steering wheel so he's home alone for

8-12 hours at a time on a farm. His cognitive abilities are still very much

there but he is hallucinating 90% of the time, he can pull it together enough to

have a 2 minute conversation with someone on the phone & sound normal, but

that's about it.

I'm the closest child, I live 2 hours away but I'm also the youngest (I'm 29)

and I'm having a hard time convincing my mother to work from home & help take

care of my dad, he's calmer when she stays with him. She would rather him go

into a geriatric psych ward. It's extremely frustrating for my sister & I that

my mom is not willing to help my father in any way, claiming she's not a

caregiver. I also have two step siblings who are 20 years older than me who

live 10-12 hours away & it's hard to handle half siblings & my mother together.

His 2 sisters live 2 hours away but they don't really understand what's going on

even though they've seen him at his worst.

My parents have a horse farm & my mom's best friend lives above their garage &

helps take care of the farm and most of his paranoia & hallucinations are

directed towards her (she's opening back accounts in their name, sneaking into

the house at night trying to stab my dad with needles, stealing their new truck,

etc) and every time she comes & goes (she refuses to come into the main house

anymore) it sets him off. We do our best to not talk about anything that will

trigger his paranoia but sometimes it's out of our control (a week ago

neighborhood kids took my parent's canoe into their pond on their day off

school, which set him off)

I am hoping that the new higher levels of seraquil & the possibility of adding

clonipan will help level him out again, he did have about 8 months of being

almost back to normal after his initial diagnosis. There is no LBD support

group in Charlotte (where I live) but there is one in Greensboro, where my

parents live.

Any advice on spousal caregiving for my mom? My boyfriend & I sat her down &

went over the suggestions on interacting on the LBD website & she said she's

trying to remain calm & not yell at him or get to aggravated with him after

talking to us.

Thanks!

[Guest guest]

Lindsey,

We have a wealth of info in our files too. If you go to the bottom of this

message, and enter your password, you can go to Feb 3 and find 's

welcome message that has tons of info. Once you are into Yahoo, there is even

more in the files and other sections.  W e have pictures of many caregivers on

here.  You are welcome to summit your pictures too.  You will find a message

at the bottom of this message  that says " Visit your group' and if you click on

it, it will take you to Yahoo and you even do a search on messages to find many

answers.  Hope this helps.  This also helps you edit any info you want to edit

for yourself.

Donna R

new member

 

hello all, I'm . My dad was diagnosed with LBD after becoming

increasingly paranoid & hallucinating.

He was on every drug LBD patients aren't supposed to take until we found a

wonderful neurologist at UNC that diagnosed his LBD. He has recently (earlier

this week) slipped back into the extreme paranoia/hallucinations and we're not

sure if it's him not taking his pills (my mother doesn't always watch him) or if

the meds just aren't holding him. He was just started on heavy doses of seraquil

(10 pills a day!) to combat the paranoia & hallucinations but it's not helping

yet.

I think one of my parent's main issues is their age gap, my mom is 7 years

younger & still working full time while my dad has been retired for 5 years. My

dad has gotten to the point where he needs constant supervision & cannot ride in

a car without outbursts & grabbing the steering wheel so he's home alone for

8-12 hours at a time on a farm. His cognitive abilities are still very much

there but he is hallucinating 90% of the time, he can pull it together enough to

have a 2 minute conversation with someone on the phone & sound normal, but

that's about it.

I'm the closest child, I live 2 hours away but I'm also the youngest (I'm 29)

and I'm having a hard time convincing my mother to work from home & help take

care of my dad, he's calmer when she stays with him. She would rather him go

into a geriatric psych ward. It's extremely frustrating for my sister & I that

my mom is not willing to help my father in any way, claiming she's not a

caregiver. I also have two step siblings who are 20 years older than me who live

10-12 hours away & it's hard to handle half siblings & my mother together. His 2

sisters live 2 hours away but they don't really understand what's going on even

though they've seen him at his worst.

My parents have a horse farm & my mom's best friend lives above their garage &

helps take care of the farm and most of his paranoia & hallucinations are

directed towards her (she's opening back accounts in their name, sneaking into

the house at night trying to stab my dad with needles, stealing their new truck,

etc) and every time she comes & goes (she refuses to come into the main house

anymore) it sets him off. We do our best to not talk about anything that will

trigger his paranoia but sometimes it's out of our control (a week ago

neighborhood kids took my parent's canoe into their pond on their day off

school, which set him off)

I am hoping that the new higher levels of seraquil & the possibility of adding

clonipan will help level him out again, he did have about 8 months of being

almost back to normal after his initial diagnosis. There is no LBD support group

in Charlotte (where I live) but there is one in Greensboro, where my parents

live.

Any advice on spousal caregiving for my mom? My boyfriend & I sat her down &

went over the suggestions on interacting on the LBD website & she said she's

trying to remain calm & not yell at him or get to aggravated with him after

talking to us.

Thanks!

[Guest guest]

Lindsey,

We have a wealth of info in our files too. If you go to the bottom of this

message, and enter your password, you can go to Feb 3 and find 's

welcome message that has tons of info. Once you are into Yahoo, there is even

more in the files and other sections.  W e have pictures of many caregivers on

here.  You are welcome to summit your pictures too.  You will find a message

at the bottom of this message  that says " Visit your group' and if you click on

it, it will take you to Yahoo and you even do a search on messages to find many

answers.  Hope this helps.  This also helps you edit any info you want to edit

for yourself.

Donna R

new member

 

hello all, I'm . My dad was diagnosed with LBD after becoming

increasingly paranoid & hallucinating.

He was on every drug LBD patients aren't supposed to take until we found a

wonderful neurologist at UNC that diagnosed his LBD. He has recently (earlier

this week) slipped back into the extreme paranoia/hallucinations and we're not

sure if it's him not taking his pills (my mother doesn't always watch him) or if

the meds just aren't holding him. He was just started on heavy doses of seraquil

(10 pills a day!) to combat the paranoia & hallucinations but it's not helping

yet.

I think one of my parent's main issues is their age gap, my mom is 7 years

younger & still working full time while my dad has been retired for 5 years. My

dad has gotten to the point where he needs constant supervision & cannot ride in

a car without outbursts & grabbing the steering wheel so he's home alone for

8-12 hours at a time on a farm. His cognitive abilities are still very much

there but he is hallucinating 90% of the time, he can pull it together enough to

have a 2 minute conversation with someone on the phone & sound normal, but

that's about it.

I'm the closest child, I live 2 hours away but I'm also the youngest (I'm 29)

and I'm having a hard time convincing my mother to work from home & help take

care of my dad, he's calmer when she stays with him. She would rather him go

into a geriatric psych ward. It's extremely frustrating for my sister & I that

my mom is not willing to help my father in any way, claiming she's not a

caregiver. I also have two step siblings who are 20 years older than me who live

10-12 hours away & it's hard to handle half siblings & my mother together. His 2

sisters live 2 hours away but they don't really understand what's going on even

though they've seen him at his worst.

My parents have a horse farm & my mom's best friend lives above their garage &

helps take care of the farm and most of his paranoia & hallucinations are

directed towards her (she's opening back accounts in their name, sneaking into

the house at night trying to stab my dad with needles, stealing their new truck,

etc) and every time she comes & goes (she refuses to come into the main house

anymore) it sets him off. We do our best to not talk about anything that will

trigger his paranoia but sometimes it's out of our control (a week ago

neighborhood kids took my parent's canoe into their pond on their day off

school, which set him off)

I am hoping that the new higher levels of seraquil & the possibility of adding

clonipan will help level him out again, he did have about 8 months of being

almost back to normal after his initial diagnosis. There is no LBD support group

in Charlotte (where I live) but there is one in Greensboro, where my parents

live.

Any advice on spousal caregiving for my mom? My boyfriend & I sat her down &

went over the suggestions on interacting on the LBD website & she said she's

trying to remain calm & not yell at him or get to aggravated with him after

talking to us.

Thanks!

[Guest guest]

Lindsey,

We have a wealth of info in our files too. If you go to the bottom of this

message, and enter your password, you can go to Feb 3 and find 's

welcome message that has tons of info. Once you are into Yahoo, there is even

more in the files and other sections.  W e have pictures of many caregivers on

here.  You are welcome to summit your pictures too.  You will find a message

at the bottom of this message  that says " Visit your group' and if you click on

it, it will take you to Yahoo and you even do a search on messages to find many

answers.  Hope this helps.  This also helps you edit any info you want to edit

for yourself.

Donna R

new member

 

hello all, I'm . My dad was diagnosed with LBD after becoming

increasingly paranoid & hallucinating.

He was on every drug LBD patients aren't supposed to take until we found a

wonderful neurologist at UNC that diagnosed his LBD. He has recently (earlier

this week) slipped back into the extreme paranoia/hallucinations and we're not

sure if it's him not taking his pills (my mother doesn't always watch him) or if

the meds just aren't holding him. He was just started on heavy doses of seraquil

(10 pills a day!) to combat the paranoia & hallucinations but it's not helping

yet.

I think one of my parent's main issues is their age gap, my mom is 7 years

younger & still working full time while my dad has been retired for 5 years. My

dad has gotten to the point where he needs constant supervision & cannot ride in

a car without outbursts & grabbing the steering wheel so he's home alone for

8-12 hours at a time on a farm. His cognitive abilities are still very much

there but he is hallucinating 90% of the time, he can pull it together enough to

have a 2 minute conversation with someone on the phone & sound normal, but

that's about it.

I'm the closest child, I live 2 hours away but I'm also the youngest (I'm 29)

and I'm having a hard time convincing my mother to work from home & help take

care of my dad, he's calmer when she stays with him. She would rather him go

into a geriatric psych ward. It's extremely frustrating for my sister & I that

my mom is not willing to help my father in any way, claiming she's not a

caregiver. I also have two step siblings who are 20 years older than me who live

10-12 hours away & it's hard to handle half siblings & my mother together. His 2

sisters live 2 hours away but they don't really understand what's going on even

though they've seen him at his worst.

My parents have a horse farm & my mom's best friend lives above their garage &

helps take care of the farm and most of his paranoia & hallucinations are

directed towards her (she's opening back accounts in their name, sneaking into

the house at night trying to stab my dad with needles, stealing their new truck,

etc) and every time she comes & goes (she refuses to come into the main house

anymore) it sets him off. We do our best to not talk about anything that will

trigger his paranoia but sometimes it's out of our control (a week ago

neighborhood kids took my parent's canoe into their pond on their day off

school, which set him off)

I am hoping that the new higher levels of seraquil & the possibility of adding

clonipan will help level him out again, he did have about 8 months of being

almost back to normal after his initial diagnosis. There is no LBD support group

in Charlotte (where I live) but there is one in Greensboro, where my parents

live.

Any advice on spousal caregiving for my mom? My boyfriend & I sat her down &

went over the suggestions on interacting on the LBD website & she said she's

trying to remain calm & not yell at him or get to aggravated with him after

talking to us.

Thanks!