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Dear ,

Thank you for your lovely welcome. The waters are getting more

difficult to navigate indeed. It is hard finding the time for my

brothers to communicate, so there are times that I do feel alone. We

all do the best we can.... My aunt is also a force to be reckoned

with, and I try to work with what I've got, not to antagonize.

Looking back, there are so many things that I should have recognized,

but didn't... and I should have put my foot down about things long

ago too, but that is all water under the bridge.

I know things will get more difficult, but I will hang in there....

I'm trying to suggest to my aunt that it's time to get someone in to

help with my mother. My aunt of course says that Mom doesn't want

anyone there that she isn't familiar with. I suggested that since

she has someone local in mind, that she try to have her come in a few

hours while my aunt is still there. I pointed out that when a

physical therapist came to the house (the paltry twice a week for one

month that Oxford paid for) my Mom liked her and it was fine.

Baby steps.

Thanks for listening,

Helene

> >

> > Hello all,

> > I am a newcomer to the group. I'm crying as I read this series

of

> > posts. My mom is 74, and we figure (my brothers and I) that

she's

> > had LBD for the last 7 years. One of my brothers brought up the

> > diagnosis of LBD, and after a while, her doctor concurred. She

is

> > still living at home about 25 miles and a bridge away - my aunt

(also

> > not a youngster) goes to care for her daily; she is still as

sharp as

> > a tack. I go up on weekends to help out. My father in law, 88,

has

> > had Alzheimer's for about 2 years now. They

> >

> > I echo a lot of the emotions I am reading about. My Mom has not

had

> > an easy life, and is such a good person, and I wonder - why

should

> > something like this happen to her? But we push on, and try as

best

> > we can to keep her at home, which is where she loves to be the

most.

> > Years ago, we tried to have her sell her house and move to an

> > apartment within walking distance of my aunt - but that never

> > happened - and sometimes it is hard to deal with family..... my

aunt

> > always supported her efforts to stay in the house. Now when

> > something happens to something in the house, we get a phone call,

or

> > one of my brothers who lives in NJ gets a phone call. It is not

> > easy. But, we keep on keeping on.

> >

> > It was a struggle to get the durable POA, but about a year and a

half

> > ago, we managed to get that done. There are lots of other

matters

> > that were never taken care of, and these will have to get handled

> > with a lot of hassle, eventually.... these are lessons learned,

and

> > when our kids are done with school, we will do the durable POA,

and

> > all the other things that go along with it.

> >

> > I was happy to read about the Lewy Mouse.... eventually one day,

I

> > pray that LBD can be conquered. It seems that so much research

has

> > gone into Alzheimer's and so little into LBD.... and yet there

are so

> > many people that have had a family member affected by LBD. I

wish

> > there were some alternative choices for people with LBD, rather

than

> > take aricept and namenda..... I've read about a new drug

entering a

> > phase 3 clinical trial (I believe, if memory serves me correctly)

> > called " Dimebon, " again for Alzheimer's patients... Wish there

ws a

> > way to give that one a try for LBD; it sounded pretty good.

Anyone

> > have any info on this?

> >

> > In the meantime, I have learned to take one day at a time, one

phone

> > call at a time... and recently took up yoga. It has helped a

lot. I

> > still cry a lot, but then again, I am the type of person that

cries

> > when watching sentimental commercials!

> >

> > Regards to all,

> >

> > Helene

> > Long Island, New York

> >

>

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Dear Helene,

many of us in this group have dealt with inlaws i mean outlaws from hell, i am

an only child and dealth with my mom, they were divorced in 1988, my dads sister

who lived in ny while dad lived in pensacola, and my grandmother who also lived

in ny and noone wanted to come help dad for one reason or another so i left my

home and my friends and with my boyfriend then, donnie, and i moved to pensacola

florida to take care of my father, i am glad we did, my mmom came to visit once

and told my aunt and grandmother that if they were still married daddy would be

in a nursing home. that was when they changed their attitudes towards me and

donnie but their attitudes got to us but dads care was more important.  just try

to do the best you can,, whoever has medical power of aqtty is going ot have to

take control and go with it, period.  someone has to be captain and the rest

just have to follow  good luck and hugs, sharon

Subject: Re: My Daddy

To: LBDcaregivers

Date: Monday, August 18, 2008, 12:44 AM

Dear ,

Thank you for your lovely welcome. The waters are getting more

difficult to navigate indeed. It is hard finding the time for my

brothers to communicate, so there are times that I do feel alone. We

all do the best we can.... My aunt is also a force to be reckoned

with, and I try to work with what I've got, not to antagonize.

Looking back, there are so many things that I should have recognized,

but didn't... and I should have put my foot down about things long

ago too, but that is all water under the bridge.

I know things will get more difficult, but I will hang in there....

I'm trying to suggest to my aunt that it's time to get someone in to

help with my mother. My aunt of course says that Mom doesn't want

anyone there that she isn't familiar with. I suggested that since

she has someone local in mind, that she try to have her come in a few

hours while my aunt is still there. I pointed out that when a

physical therapist came to the house (the paltry twice a week for one

month that Oxford paid for) my Mom liked her and it was fine.

Baby steps.

Thanks for listening,

Helene

> >

> > Hello all,

> > I am a newcomer to the group. I'm crying as I read this series

of

> > posts. My mom is 74, and we figure (my brothers and I) that

she's

> > had LBD for the last 7 years. One of my brothers brought up the

> > diagnosis of LBD, and after a while, her doctor concurred. She

is

> > still living at home about 25 miles and a bridge away - my aunt

(also

> > not a youngster) goes to care for her daily; she is still as

sharp as

> > a tack. I go up on weekends to help out. My father in law, 88,

has

> > had Alzheimer's for about 2 years now. They

> >

> > I echo a lot of the emotions I am reading about. My Mom has not

had

> > an easy life, and is such a good person, and I wonder - why

should

> > something like this happen to her? But we push on, and try as

best

> > we can to keep her at home, which is where she loves to be the

most.

> > Years ago, we tried to have her sell her house and move to an

> > apartment within walking distance of my aunt - but that never

> > happened - and sometimes it is hard to deal with family..... my

aunt

> > always supported her efforts to stay in the house. Now when

> > something happens to something in the house, we get a phone call,

or

> > one of my brothers who lives in NJ gets a phone call. It is not

> > easy. But, we keep on keeping on.

> >

> > It was a struggle to get the durable POA, but about a year and a

half

> > ago, we managed to get that done. There are lots of other

matters

> > that were never taken care of, and these will have to get handled

> > with a lot of hassle, eventually.. .. these are lessons learned,

and

> > when our kids are done with school, we will do the durable POA,

and

> > all the other things that go along with it.

> >

> > I was happy to read about the Lewy Mouse.... eventually one day,

I

> > pray that LBD can be conquered. It seems that so much research

has

> > gone into Alzheimer's and so little into LBD.... and yet there

are so

> > many people that have had a family member affected by LBD. I

wish

> > there were some alternative choices for people with LBD, rather

than

> > take aricept and namenda..... I've read about a new drug

entering a

> > phase 3 clinical trial (I believe, if memory serves me correctly)

> > called " Dimebon, " again for Alzheimer's patients... Wish there

ws a

> > way to give that one a try for LBD; it sounded pretty good.

Anyone

> > have any info on this?

> >

> > In the meantime, I have learned to take one day at a time, one

phone

> > call at a time... and recently took up yoga. It has helped a

lot. I

> > still cry a lot, but then again, I am the type of person that

cries

> > when watching sentimental commercials!

> >

> > Regards to all,

> >

> > Helene

> > Long Island, New York

> >

>

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  • 1 month later...

I am trying to find out about support groups for LBD in the

Cookeville,TN area. My Mama needs some support and to talk to others.

She can't afford a computer or the internet. We are already helping her

financally.

She is having touble eating and sleeping. She feels so alone with my

Daddy in the nursing home.

Thanks for all the help!

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