hello from Cambridge

[Guest guest]

This is my first post. My father was diagnosed Monday the 26th June with

" diffuse Lewy body

disease " . I had never heard of it, but I have learned a lot in two days. I

would like some

advice from the group. I and my three brothers are debating where my father

should live.

Right now he is an ALF in Columbus, Ohio, the town where he has lived by himself

for the last

8 years. One of my brothers (whose wife has worked in elder care) insists he

has to be in an

ALF. Another brother has volunteered to take him in. That brother lives by

himself (he has

shared custody of a 16 year old son), works at home selling insurance. He says

that he could

care for my Dad by hiring a caretaker for when he is working.

I (and my fourth brother) feel torn. On the one hand, my father says he wants

to live with my

brother. On the other, I feel that brother doesn't realize how much work it

would be, and

that my father would have to move to an ALF (or nursing home) in a few weeks or

months. I

am afraid that the number of changes will make the disease progress faster. (We

are all

agreed

he needs to move closer to family - two of my brothers live in Florida, one in

North Carolina,

and I live in Massachusetts.)

The nurse at the ALF he is in, and the neurologist who diagnosed the DLBD, say

he would be

OK living with family if he was supervised constantly. What advice do you have?

[Guest guest]

Welcome to the board . I'm in Cambridge, MA too. Too bad your

dad wasn't in MA - then I would suggest having him go to Sherrill

House in JP, where my mother lives. Overall I've been very satisfied

with her care. The compassionate team is led by a nurse who has

worked with dementia patients for over 35 years. She knows her

stuff.

Since that's not an option - here's my hope for your dad. If he's

going to live in an ALF or NH - he should be close to one of you. As

you will see with some of our posts here - your loved one needs

vigilant care from a family member to make sure they are treated

correctly. There are more people out there than not who know nothing

about LBD and it's a disease NOT to be treated just like ALZ. As you

read some of our posts (you can search posts by following the link in

my signature) - you'll see many examples of downward spirals with our

LOs because they were classified with generic dementia, received a

medication that works for ALZ, but doesn't with LBD and they take a

turn for the worse because of it. If you want to read my mother's

story - follow the link below and go to the Files section on the

website board - I posted my mother's story there...

So, if your brother is willing to care for your dad - have him do so.

At least, then, you can be sure he is safe. And when a PT caregiver

isn't enough, he can always get a FT caregiver to help him. Yes, a

change of scenery is going to make your dad more confused - but since

he's all alone right now in OH he's going to have to move anyway.

I wish you luck in your very difficult decision - go to the Links

section of the board (by following that same link below) to see lots

of useful information that will help in your decision process.

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid decline from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

as weepy) and as of 4/21 on Exelon.

Visit the LBDCaregivers board on the web:

http://groups.yahoo.com/group/LBDcaregivers/

(See files, suggested links, databases, photos of members, and search

previous posts)

>

> This is my first post. My father was diagnosed Monday the 26th

June with " diffuse Lewy body

> disease " . I had never heard of it, but I have learned a lot in two

days. I would like some

> advice from the group. I and my three brothers are debating where

my father should live.

> Right now he is an ALF in Columbus, Ohio, the town where he has

lived by himself for the last

> 8 years. One of my brothers (whose wife has worked in elder care)

insists he has to be in an

> ALF. Another brother has volunteered to take him in. That brother

lives by himself (he has

> shared custody of a 16 year old son), works at home selling

insurance. He says that he could

> care for my Dad by hiring a caretaker for when he is working.

> I (and my fourth brother) feel torn. On the one hand, my father

says he wants to live with my

> brother. On the other, I feel that brother doesn't realize how

much work it would be, and

> that my father would have to move to an ALF (or nursing home) in a

few weeks or months. I

> am afraid that the number of changes will make the disease progress

faster. (We are all

> agreed

> he needs to move closer to family - two of my brothers live in

Florida, one in North Carolina,

> and I live in Massachusetts.)

> The nurse at the ALF he is in, and the neurologist who diagnosed

the DLBD, say he would be

> OK living with family if he was supervised constantly. What advice

do you have?

>

[Guest guest]

,

I hope I got the name correct. What about having your Father take a

" vacation " from his ALF and visit your brother for a week or two. I

know it might mean more changes for you Father, but if you brother

decides he can handle it then your Father could just stay there. If

your brother decides he can't do it, then your Father at least has the

ALF to go back to until you can find another.

Good Luck,

in Dallas

>

> This is my first post. My father was diagnosed Monday the 26th June

with " diffuse Lewy body

> disease " . I had never heard of it, but I have learned a lot in two

days. I would like some

> advice from the group. I and my three brothers are debating where

my father should live.

> Right now he is an ALF in Columbus, Ohio, the town where he has

lived by himself for the last

> 8 years. One of my brothers (whose wife has worked in elder care)

insists he has to be in an

> ALF. Another brother has volunteered to take him in. That brother

lives by himself (he has

> shared custody of a 16 year old son), works at home selling

insurance. He says that he could

> care for my Dad by hiring a caretaker for when he is working.

> I (and my fourth brother) feel torn. On the one hand, my father

says he wants to live with my

> brother. On the other, I feel that brother doesn't realize how much

work it would be, and

> that my father would have to move to an ALF (or nursing home) in a

few weeks or months. I

> am afraid that the number of changes will make the disease progress

faster. (We are all

> agreed

> he needs to move closer to family - two of my brothers live in

Florida, one in North Carolina,

> and I live in Massachusetts.)

> The nurse at the ALF he is in, and the neurologist who diagnosed the

DLBD, say he would be

> OK living with family if he was supervised constantly. What advice

do you have?

>

[Guest guest]

Hi, ,

I am so sorry to hear of your father's diagnosis, but glad you found our

group. You will find a lot of helpful information among our members. Many of

us

were like you when our LO was diagnosed with LBD never having heard of it

before. I remember being so relieved that it wasn't Alzheimers. Was I ever in

for a surprise! The decision about how to best care for a LO is very

difficult. I cared for my father at home until he passed away on March 4 of

this

year. He had an eight year battle with LBD. I would not have had it any other

way, but it does take an enormous commitment. Sometimes it is just not

possible to keep our LOs at home. I had a sitter that came several times a

week

for a few hours so I could get some work done. My dad could go with me to

work (we worked together for twenty years) in the mornings until about the last

six months of his life. That helped me tremendously. He would be so tired by

the time we got home, he would nap most of the afternoon with the sitter

here until I got home around 6:00 PM. For the last six months of his life, I

still had the sitter come, but I did not leave the house and could work a

little from home when the sitter was here. Your brother may be able to work

out

something similar with his work schedule. My dad would become very

disoriented, agitated, and fearful when he was not in his regular environment.

He had

to stay in the hospital twice during his illness, and it was a disaster. He

did much better in his home environment, but many people here have had

wonderful results in ALF or NH with their loved ones. I can say that I disagree

with your sister in law that insists your dad needs to be in ALF, and I

definitely agree with the doctor that says your dad would be fine at home, but

with

constant supervision. It is indeed a lot of work, but that is a decision your

brother has to make for himself. I have a sister and a brother that did very

little to nothing for my dad during his illness, but I made the decision for

myself to care for dad. It was the right decision for me, but it is not

possible for everyone.

Sorry for the rambling - I just remember being where you are and wanting all

the information I could find. I will be thinking of you and your family.

Let us know how you are doing whenever you have time.

Hugs,

Piper

[Guest guest]

Hi, ,

I am so sorry to hear of your father's diagnosis, but glad you found our

group. You will find a lot of helpful information among our members. Many of

us

were like you when our LO was diagnosed with LBD never having heard of it

before. I remember being so relieved that it wasn't Alzheimers. Was I ever in

for a surprise! The decision about how to best care for a LO is very

difficult. I cared for my father at home until he passed away on March 4 of

this

year. He had an eight year battle with LBD. I would not have had it any other

way, but it does take an enormous commitment. Sometimes it is just not

possible to keep our LOs at home. I had a sitter that came several times a

week

for a few hours so I could get some work done. My dad could go with me to

work (we worked together for twenty years) in the mornings until about the last

six months of his life. That helped me tremendously. He would be so tired by

the time we got home, he would nap most of the afternoon with the sitter

here until I got home around 6:00 PM. For the last six months of his life, I

still had the sitter come, but I did not leave the house and could work a

little from home when the sitter was here. Your brother may be able to work

out

something similar with his work schedule. My dad would become very

disoriented, agitated, and fearful when he was not in his regular environment.

He had

to stay in the hospital twice during his illness, and it was a disaster. He

did much better in his home environment, but many people here have had

wonderful results in ALF or NH with their loved ones. I can say that I disagree

with your sister in law that insists your dad needs to be in ALF, and I

definitely agree with the doctor that says your dad would be fine at home, but

with

constant supervision. It is indeed a lot of work, but that is a decision your

brother has to make for himself. I have a sister and a brother that did very

little to nothing for my dad during his illness, but I made the decision for

myself to care for dad. It was the right decision for me, but it is not

possible for everyone.

Sorry for the rambling - I just remember being where you are and wanting all

the information I could find. I will be thinking of you and your family.

Let us know how you are doing whenever you have time.

Hugs,

Piper

[Guest guest]

Hi ,

I have a few things to add to the excellent suggestions you've received

thus far. I agree with the concept of letting your brother give it a try

at his house, and think the short-term vacation idea makes sense. I do

think it would be ideal if that brother can meet with other LBD caregivers

in his area to try to understand beforehand what he's getting himself in

to. Assuming he's not in the SF Bay Area (CA), Ft. Lauderdale (FL),

Maplewood (MN), or Toronto area -- where there are support groups for LBD

caregivers -- you could contact the Parkinson's support group in the area

and ask if there are any LBD families. Second best would be to talk to

someone who is a caregiver for a person with PD or AD.

It's great that you and all of your siblings are taking such a strong

interest in your father's wellbeing. (We don't always see this.) I think

it would be ideal if the four siblings and your father could have a family

meeting to discuss this short-term vacation. Set some guidelines as to how

long this will last and how you will monitor the success (or lack

thereof). Then have another family meeting (even if it's by phone) at the

end of the vacation to assess how things have gone. I think it's important

that the three siblings not involved in the day-to-day care of your father

do things in support of the brother who is doing the caregiving, such as

flying into town to take Dad to a doctor's appointment, taking your Dad out

for a half-day to a museum and lunch, pitching in to pay for a part-time

caregiver at your brother's house, investigating adult daycare options,

looking into support groups for your brother, and investigating assisted

living and skilled nursing options. During the " vacation, " I think it

would be wise for everyone to investigate other assisted living

options. (More on that below.)

I understand the concern about having your dad move several times in a

short period. I've been in the same quandary. Dad's neurologist told him

flat out that if those with neurological conditions move their symptoms

often worsen. But Dad wanted to move. Yes, he has dementia and doesn't

make the best decisions but we feel he should be allowed to make his own

decisions, regardless of how wrong they appear to us. I moved Dad three

times in less than a year. We did everything possible to make it easy on

him. My husband (also an MIT alum) and I did all the hard work. Dad

basically went from one fully furnished apartment to the airplane to

another fully furnished apartment. (We bought duplicate furniture.) He

did great for the first two moves; I do think he may've suffered some ill

effects from the third move but it's hard to know if the move caused the

deterioration or if the deterioration was coming anyway.

I don't think it's a requirement that your dad be in AL but I do agree that

it can be a great thing. My dad has been in AL for over two years. He's

lived in three AL facilities. The current one is fantastic. Dad likes it

and the family likes it. We monitor the care Dad receives very

closely. Yes, he continues to deteriorate but everyone (especially Dad) is

doing everything they can to make this a slow process.

Note that each state has its own laws about who can be in AL and who must

be in skilled nursing (SN). It would be wise for your family to

investigate the laws and options near each of the brothers who is willing

to be active in the care of your father when he's in a facility. In CA,

for example, a resident of an AL facility must be able to feed

himself. The staff can put food on a utensil and help guide the

utensil/hand to the mouth but can't put the utensil/food in the mouth. In

UT, however, the staff is allowed to fully help the resident eat. We are

trying to keep Dad in AL as long as possible so for us having Dad in UT

makes more sense. Also, if one of you finds a great AL center near your

home or work and you've checked it out and like it a lot, I think that

would be an important factor in helping decide where your dad will live.

I've come to be less afraid of the unknown -- will Dad deteriorate with all

the moves and will this living situation work out?? It can just kill you

worrying about all the bad things that might happen. Just do the best you

can and try to be satisfied with that.

Robin

>________________________________________________________________________

>

>9. hello from Cambridge

> Posted by: " patrickcunninghamyoga " 8@...

> patrickcunninghamyoga

> Date: Wed Jun 28, 2006 8:54 pm (PDT)

>

>This is my first post. My father was diagnosed Monday the 26th June with

> " diffuse Lewy body

>disease " . I had never heard of it, but I have learned a lot in two

>days. I would like some

>advice from the group. I and my three brothers are debating where my

>father should live.

>Right now he is an ALF in Columbus, Ohio, the town where he has lived by

>himself for the last

>8 years. One of my brothers (whose wife has worked in elder care) insists

>he has to be in an

>ALF. Another brother has volunteered to take him in. That brother lives

>by himself (he has

>shared custody of a 16 year old son), works at home selling insurance. He

>says that he could

>care for my Dad by hiring a caretaker for when he is working.

>I (and my fourth brother) feel torn. On the one hand, my father says he

>wants to live with my

>brother. On the other, I feel that brother doesn't realize how much work

>it would be, and

>that my father would have to move to an ALF (or nursing home) in a few

>weeks or months. I

>am afraid that the number of changes will make the disease progress

>faster. (We are all

>agreed

>he needs to move closer to family - two of my brothers live in Florida,

>one in North Carolina,

>and I live in Massachusetts.)

>The nurse at the ALF he is in, and the neurologist who diagnosed the DLBD,

>say he would be

>OK living with family if he was supervised constantly. What advice do you

>have?

>_______________________________________________________________________

>

>8a. Re: hello from Cambridge

> Posted by: " " octoryrose@... octoryrose

> Date: Thu Jun 29, 2006 4:34 am (PDT)

>

>Welcome to the board . I'm in Cambridge, MA too. Too bad your

>dad wasn't in MA - then I would suggest having him go to Sherrill

>House in JP, where my mother lives. Overall I've been very satisfied

>with her care. The compassionate team is led by a nurse who has

>worked with dementia patients for over 35 years. She knows her

>stuff.

>

>Since that's not an option - here's my hope for your dad. If he's

>going to live in an ALF or NH - he should be close to one of you. As

>you will see with some of our posts here - your loved one needs

>vigilant care from a family member to make sure they are treated

>correctly. There are more people out there than not who know nothing

>about LBD and it's a disease NOT to be treated just like ALZ. As you

>read some of our posts (you can search posts by following the link in

>my signature) - you'll see many examples of downward spirals with our

>LOs because they were classified with generic dementia, received a

>medication that works for ALZ, but doesn't with LBD and they take a

>turn for the worse because of it. If you want to read my mother's

>story - follow the link below and go to the Files section on the

>website board - I posted my mother's story there...

>

>So, if your brother is willing to care for your dad - have him do so.

>At least, then, you can be sure he is safe. And when a PT caregiver

>isn't enough, he can always get a FT caregiver to help him. Yes, a

>change of scenery is going to make your dad more confused - but since

>he's all alone right now in OH he's going to have to move anyway.

>

>I wish you luck in your very difficult decision - go to the Links

>section of the board (by following that same link below) to see lots

>of useful information that will help in your decision process.

>

>; loving daughter of Maureen of Boston, MA; finally diagnosed

>with LBD on 2/06 after also being diagnosed with everything from AD

>to Vascular Dementia caused by mini strokes to Binswengers...; was

>victim to rapid decline from Risperidone (or combination of

>Risperidone with other drugs OR possibly received another " bad drug "

>when she was observed/tested in a hospital in 10/05); in a NH since

>11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

>as weepy) and as of 4/21 on Exelon.

>

>Visit the LBDCaregivers board on the web:

>http://groups.yahoo.com/group/LBDcaregivers/

>(See files, suggested links, databases, photos of members, and search

>previous posts)

>

>________________________________________________________________________

>

>8b. Re: hello from Cambridge

> Posted by: " lauraf13 " lauraf13@... lauraf13

> Date: Thu Jun 29, 2006 5:32 am (PDT)

>

>,

>

>I hope I got the name correct. What about having your Father take a

> " vacation " from his ALF and visit your brother for a week or two. I

>know it might mean more changes for you Father, but if you brother

>decides he can handle it then your Father could just stay there. If

>your brother decides he can't do it, then your Father at least has the

>ALF to go back to until you can find another.

>

>Good Luck,

> in Dallas

>

>________________________________________________________________________

>

>3. Re: hello from Cambridge

> Posted by: " ppark4915@... " ppark4915@... wheatonpark

> Date: Thu Jun 29, 2006 2:40 pm (PDT)

>

>Hi, ,

>

>I am so sorry to hear of your father's diagnosis, but glad you found our

>group. You will find a lot of helpful information among our

>members. Many of us

>were like you when our LO was diagnosed with LBD never having heard of it

>before. I remember being so relieved that it wasn't Alzheimers. Was I

>ever in

>for a surprise! The decision about how to best care for a LO is very

>difficult. I cared for my father at home until he passed away on March 4

>of this

>year. He had an eight year battle with LBD. I would not have had it any

>other

>way, but it does take an enormous commitment. Sometimes it is just not

>possible to keep our LOs at home. I had a sitter that came several times

>a week

>for a few hours so I could get some work done. My dad could go with me to

>work (we worked together for twenty years) in the mornings until about

>the last

>six months of his life. That helped me tremendously. He would be so

>tired by

>the time we got home, he would nap most of the afternoon with the sitter

>here until I got home around 6:00 PM. For the last six months of his

>life, I

>still had the sitter come, but I did not leave the house and could work a

>little from home when the sitter was here. Your brother may be able to

>work out

>something similar with his work schedule. My dad would become very

>disoriented, agitated, and fearful when he was not in his regular

>environment. He had

>to stay in the hospital twice during his illness, and it was a disaster. He

>did much better in his home environment, but many people here have had

>wonderful results in ALF or NH with their loved ones. I can say that I

>disagree

>with your sister in law that insists your dad needs to be in ALF, and I

>definitely agree with the doctor that says your dad would be fine at

>home, but with

>constant supervision. It is indeed a lot of work, but that is a decision

>your

>brother has to make for himself. I have a sister and a brother that did very

>little to nothing for my dad during his illness, but I made the decision for

>myself to care for dad. It was the right decision for me, but it is not

>possible for everyone.

>

>Sorry for the rambling - I just remember being where you are and wanting all

>the information I could find. I will be thinking of you and your family.

>Let us know how you are doing whenever you have time.

>

>Hugs,

>

>Piper

[Guest guest]

Thank you . (I hope I am doing this correctly; I¹m not sure where

this post will end up going.) What a coincidence that you are in Cambridge

too! I have offered to have my father enter a ALF near me, but he is clear

about wanting to go to Florida and live with one of my brothers in Daytona

Beach. (Two of my brothers live there.) I am learning a lot from reading

people¹s posts. I am impressed how loving and generous people are.

[Guest guest]

, what a good idea! I like the idea of having a trial run - a " vacation " -

I have

suggested it to my brothers. Thank you!

> >

> > This is my first post. My father was diagnosed Monday the 26th June

> with " diffuse Lewy body

> > disease " . I had never heard of it, but I have learned a lot in two

> days. I would like some

> > advice from the group. I and my three brothers are debating where

> my father should live.

> > Right now he is an ALF in Columbus, Ohio, the town where he has

> lived by himself for the last

> > 8 years. One of my brothers (whose wife has worked in elder care)

> insists he has to be in an

> > ALF. Another brother has volunteered to take him in. That brother

> lives by himself (he has

> > shared custody of a 16 year old son), works at home selling

> insurance. He says that he could

> > care for my Dad by hiring a caretaker for when he is working.

> > I (and my fourth brother) feel torn. On the one hand, my father

> says he wants to live with my

> > brother. On the other, I feel that brother doesn't realize how much

> work it would be, and

> > that my father would have to move to an ALF (or nursing home) in a

> few weeks or months. I

> > am afraid that the number of changes will make the disease progress

> faster. (We are all

> > agreed

> > he needs to move closer to family - two of my brothers live in

> Florida, one in North Carolina,

> > and I live in Massachusetts.)

> > The nurse at the ALF he is in, and the neurologist who diagnosed the

> DLBD, say he would be

> > OK living with family if he was supervised constantly. What advice

> do you have?

> >

>

[Guest guest]

Hi, Piper - thanks for the response. I have enormous respect for you and others

who

undertook years of care in your home. Thank you for letting me share the

knowledge you

have gained from that.

>

> Hi, ,

>

> I am so sorry to hear of your father's diagnosis, but glad you found our

> group. You will find a lot of helpful information among our members. Many of

us

> were like you when our LO was diagnosed with LBD never having heard of it

> before. I remember being so relieved that it wasn't Alzheimers. Was I ever

in

> for a surprise! The decision about how to best care for a LO is very

> difficult. I cared for my father at home until he passed away on March 4 of

this

> year. He had an eight year battle with LBD. I would not have had it any

other

> way, but it does take an enormous commitment. Sometimes it is just not

> possible to keep our LOs at home. I had a sitter that came several times a

week

> for a few hours so I could get some work done. My dad could go with me to

> work (we worked together for twenty years) in the mornings until about the

last

> six months of his life. That helped me tremendously. He would be so tired by

> the time we got home, he would nap most of the afternoon with the sitter

> here until I got home around 6:00 PM. For the last six months of his life, I

> still had the sitter come, but I did not leave the house and could work a

> little from home when the sitter was here. Your brother may be able to work

out

> something similar with his work schedule. My dad would become very

> disoriented, agitated, and fearful when he was not in his regular

environment. He had

> to stay in the hospital twice during his illness, and it was a disaster. He

> did much better in his home environment, but many people here have had

> wonderful results in ALF or NH with their loved ones. I can say that I

disagree

> with your sister in law that insists your dad needs to be in ALF, and I

> definitely agree with the doctor that says your dad would be fine at home,

but with

> constant supervision. It is indeed a lot of work, but that is a decision

your

> brother has to make for himself. I have a sister and a brother that did very

> little to nothing for my dad during his illness, but I made the decision for

> myself to care for dad. It was the right decision for me, but it is not

> possible for everyone.

>

> Sorry for the rambling - I just remember being where you are and wanting all

> the information I could find. I will be thinking of you and your family.

> Let us know how you are doing whenever you have time.

>

> Hugs,

>

> Piper

>

>

>

>

>

[Guest guest]

In a message dated 7/3/2006 2:44:59 PM Eastern Daylight Time,

lauraf13@... writes:

,

You are welcome. I'm always looking for a way to try things out when making

a major

change. My brother has always leaped before looking, but I'm one of those

that likes to

have a foot in each place before jumping. I hope it works out for your

Father and your

bother.

Good luck,

in Dallas

> >

> > ,

> >

> > I hope I got the name correct. What about having your Father take a

> > " vacation " from his ALF and visit your brother for a week or two. I

> > know it might mean more changes for you Father, but if you brother

> > decides he can handle it then your Father could just stay there. If

> > your brother decides he can't do it, then your Father at least has the

> > ALF to go back to until you can find another.

> >

> > Good Luck,

> > in Dallas

> >

Hi!

Geoff, brother to Pat, and the son Dad will be living with in FL, here.

I like this site already. I hope this gets read by some of the nice people

that have been helping us with their good words lately.

Thanks!

GC

[Guest guest]

I wanted to suggest a book for & his brother - anyone in the

day to day caring of his Dad. A friend told me about it a month ago,

and I've found it so helpful, with lots of very practical ideas on how

to deal with different behaviors in those w/ dementias. The book is

several years old (now in 3rd Edition)and is primarily focused on

Alzheimer Disease, but they do keep bringing in LBD symptoms . . .

Anyway, it is called The 36 Hour Day . . . put out by folks at s

Hopkins. I'd recommend it for anyone just starting to try to understand

how to help their LOs. Susie1