RE: More on costs for home care

[Guest guest]

What a beautifully written story. Your husband Larry is lucky to have you.

Your story is all too familiar - especially the home care. Unfortunately

we never did find reliable people to care for my mom. The constant theft

really was the last straw. A beautiful diamond that all her children and

grandchildren bought for her went missing as well as a quilt I made for her

- all with blocks describing her life. I can't help but wonder where they

are and who's using them. And whoever has them now will never know what

they meant to our family.

I could feel and relate to all the emotions contained in your LBD journey.

As different as all our journeys are, they are basically the same -

desperately searching for answers and solutions, the love, frustration,

sadness, guilt, and as said grief, watching our loved ones endure the

daily suffering. So many times I've just wanted to scoop my mom up and

run away - like that would solve anything! My heart aches at what she's

had to endure.

Thanks for sharing - it really helps.

Marcie

_____

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of GrammaLo

Sent: Friday, July 29, 2011 2:40 AM

To: LBDcaregivers

Subject: More on costs for home care

Hi all,

I've been " lurking " on this list for a long time, learning a great deal but

feeling that I have little to contribute. I find it ironic that it's money

that has finally encouraged me to post.

My husband, Larry, age 72, was diagnosed with LBD almost four years ago,

though I'm now certain he was ill for several years before the diagnosis. We

live on a fixed income here in the Boston area, supplemented by money we had

saved for our retirement. My own health is not great and I am not able to do

any sort of lifting, so shortly after the diagnosis, we began to have help

in our home about 12 hours a week, at the rate of $18 an hour. As time

passed and his illness worsened, Larry began attending a wonderful adult day

program ($79 per day, 5 days per week, 9:00 am to 3:00 pm, give or take half

an hour on each end, excluding transportation costs and time). Fortunately,

he is still doing well in the program, but we have come to need the help of

aides much of the rest of the time. Most of the hours are covered by

private aides, who charge $20 per hour from 7:00 am to 7:00 pm, and $15 per

hour for evenings and overnight. Two nights a week we use an aide from an

agency that charges $26 per hour for her services, of which she keeps $18.

(We began the overnight coverage at the insistence of both Larry's docs and

mine, since I was getting little to no sleep and his physical needs had

become too difficult for me to manage.)

We could find a somewhat less expensive agency, probably at the rate of $22

to $24 per hour, but we have already had two very negative experiences with

other agencies, one involving the theft of two expensive and sentimentally

irreplaceable pieces of jewelry. So I decided to use the agency recommended

by an elder care counselor who has worked with us from time to time. She has

known and trusted the agency and its staff for many years. I have also

learned that without a " deep bench " of private aides available to substitute

on short notice or to fill in during vacations, it is necessary to maintain

a good relationship with an agency. Reliable recommendations for private

aides, in my experience, usually come by word of mouth and are thus hard to

find. And once an aide has been placed in your home by an agency, she/he is

contractually prohibited from working for you privately, much as you both

may wish it. If you do the math, all of this is exorbitantly expensive, up

to $12,000 per month when we need to use extra agency time.

We are not wealthy by any means, but made the fortunate decision to buy very

good long term care policies several years ago. We could not easily afford

the premiums, but we paid them in the hopes that we could both remain at

home indefinitely in case of any illness without overburdening our children,

who live in various parts of the county.

At the time we purchased the policies, we lived in New York and bought

policies whose daily rate equaled the average daily rate of a nursing home

in our area. The policies also include a 5% annual increase for inflation.

For some reason I'm not aware of or can't remember, my policy compounds the

5% increase, while Larry's just adds the 5% to the base amount. Would that

it had been the other way around! Larry's policy has now, of course, come

into play. It will cover him indefinitely, unlike some policies that have a

four- or five-year coverage limit. It currently pays $310 per day. (I have

recently read in more than one place that most insurance companies have

stopped selling policies as good as ours, and some have stopped selling long

term care policies entirely. I am deeply grateful that at the time we bought

ours, Larry seemed to be in perfect health.)

To me, $310 a day sounds like a lot of money -- but it turns out not to be.

I am still about $2500 short at the end of each month, which I pay out of

our steadily dwindling investments. In contrast, the best assisted living

facility I have found in our area costs about $7900 per month for a

" high-functioning " memory-impaired person like Larry. To me, this seems

inconceivable, totally upside down: the " best healthcare system in the

world " makes it so much more expensive to keep my dear husband, my best

friend with whom I have shared so many happy years, at home, rather than to

send him away.

Larry will be able to continue at the day program so long as his behavior

does not harm others or himself; he does not wander; and he does not require

a " double assist " in order to use the toilet, get out of a chair, or perform

other ADLs. If he can no longer attend the program, the cost of home

assistance will become prohibitive and I will be forced to place him in a

facility of some kind. I have been cautioned by several experts that if I

wait too long to place him, he may no longer qualify for assisted living and

he may need to be placed in a nursing home. Of course, the right time is

impossible to determine. And the very thought of telling him that he can't

come home breaks my heart.

I feel guilty when I read some of your posts about the level of care you

give on your own, the distances you must drive, the costs you must shoulder

without benefit of insurance coverage. Managing all these aides and

insurance claims and medical appointments and other tasks while I am not in

the best of health, while living in a small apartment that gives us

virtually no privacy, feels like I'm running a small business in an industry

I despise -- but it is nothing compared to what many of you do. I feel that

I should be able to do more for Larry on my own. But I can't. I admire what

you are doing so much and wish you continued strength.

This post is outrageously long. I hope it gives you some useful information.

With admiration and warm regards,

Lois ( " GrammaLo " )

[Guest guest]

Dear Lois,

Could you give me the name of the company who you bought your long term health

care policies from?

I live in NY (on Long Island) and I've wanted to purchase such a policy for some

time now.

Thank you for your post, and may you continue to take such wonderful care of

your beloved husband.

Regards,

Helene in NY

(Mom 77, at home in the Bronx with aides/family pitching in)

>

> Hi all,

>

> I've been " lurking " on this list for a long time, learning a great deal but

> feeling that I have little to contribute. I find it ironic that it's money

> that has finally encouraged me to post.

>

> My husband, Larry, age 72, was diagnosed with LBD almost four years ago,

> though I'm now certain he was ill for several years before the diagnosis. We

> live on a fixed income here in the Boston area, supplemented by money we had

> saved for our retirement. My own health is not great and I am not able to do

> any sort of lifting, so shortly after the diagnosis, we began to have help

> in our home about 12 hours a week, at the rate of $18 an hour. As time

> passed and his illness worsened, Larry began attending a wonderful adult day

> program ($79 per day, 5 days per week, 9:00 am to 3:00 pm, give or take half

> an hour on each end, excluding transportation costs and time). Fortunately,

> he is still doing well in the program, but we have come to need the help of

> aides much of the rest of the time. Most of the hours are covered by

> private aides, who charge $20 per hour from 7:00 am to 7:00 pm, and $15 per

> hour for evenings and overnight. Two nights a week we use an aide from an

> agency that charges $26 per hour for her services, of which she keeps $18.

> (We began the overnight coverage at the insistence of both Larry's docs and

> mine, since I was getting little to no sleep and his physical needs had

> become too difficult for me to manage.)

>

> We could find a somewhat less expensive agency, probably at the rate of $22

> to $24 per hour, but we have already had two very negative experiences with

> other agencies, one involving the theft of two expensive and sentimentally

> irreplaceable pieces of jewelry. So I decided to use the agency recommended

> by an elder care counselor who has worked with us from time to time. She has

> known and trusted the agency and its staff for many years. I have also

> learned that without a " deep bench " of private aides available to substitute

> on short notice or to fill in during vacations, it is necessary to maintain

> a good relationship with an agency. Reliable recommendations for private

> aides, in my experience, usually come by word of mouth and are thus hard to

> find. And once an aide has been placed in your home by an agency, she/he is

> contractually prohibited from working for you privately, much as you both

> may wish it. If you do the math, all of this is exorbitantly expensive, up

> to $12,000 per month when we need to use extra agency time.

>

> We are not wealthy by any means, but made the fortunate decision to buy very

> good long term care policies several years ago. We could not easily afford

> the premiums, but we paid them in the hopes that we could both remain at

> home indefinitely in case of any illness without overburdening our children,

> who live in various parts of the county.

>

> At the time we purchased the policies, we lived in New York and bought

> policies whose daily rate equaled the average daily rate of a nursing home

> in our area. The policies also include a 5% annual increase for inflation.

> For some reason I'm not aware of or can't remember, my policy compounds the

> 5% increase, while Larry's just adds the 5% to the base amount. Would that

> it had been the other way around! Larry's policy has now, of course, come

> into play. It will cover him indefinitely, unlike some policies that have a

> four- or five-year coverage limit. It currently pays $310 per day. (I have

> recently read in more than one place that most insurance companies have

> stopped selling policies as good as ours, and some have stopped selling long

> term care policies entirely. I am deeply grateful that at the time we bought

> ours, Larry seemed to be in perfect health.)

>

> To me, $310 a day sounds like a lot of money -- but it turns out not to be.

> I am still about $2500 short at the end of each month, which I pay out of

> our steadily dwindling investments. In contrast, the best assisted living

> facility I have found in our area costs about $7900 per month for a

> " high-functioning " memory-impaired person like Larry. To me, this seems

> inconceivable, totally upside down: the " best healthcare system in the

> world " makes it so much more expensive to keep my dear husband, my best

> friend with whom I have shared so many happy years, at home, rather than to

> send him away.

>

> Larry will be able to continue at the day program so long as his behavior

> does not harm others or himself; he does not wander; and he does not require

> a " double assist " in order to use the toilet, get out of a chair, or perform

> other ADLs. If he can no longer attend the program, the cost of home

> assistance will become prohibitive and I will be forced to place him in a

> facility of some kind. I have been cautioned by several experts that if I

> wait too long to place him, he may no longer qualify for assisted living and

> he may need to be placed in a nursing home. Of course, the right time is

> impossible to determine. And the very thought of telling him that he can't

> come home breaks my heart.

>

> I feel guilty when I read some of your posts about the level of care you

> give on your own, the distances you must drive, the costs you must shoulder

> without benefit of insurance coverage. Managing all these aides and

> insurance claims and medical appointments and other tasks while I am not in

> the best of health, while living in a small apartment that gives us

> virtually no privacy, feels like I'm running a small business in an industry

> I despise -- but it is nothing compared to what many of you do. I feel that

> I should be able to do more for Larry on my own. But I can't. I admire what

> you are doing so much and wish you continued strength.

>

> This post is outrageously long. I hope it gives you some useful information.

>

> With admiration and warm regards,

> Lois ( " GrammaLo " )

>

>

>

[Guest guest]

Helene

I live in the Bronx too and taking care of mom in NYC - we should get together!

I am also writing to highly recommend someone who is helping me to get long term

care insurance and is very good !

His name is

Judah stohller and the number is:

You can call me at the number below If u want to chat a out LBD ....,

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 Lois,

> Could you give me the name of the company who you bought your long term health

care policies from?

>

> I live in NY (on Long Island) and I've wanted to purchase such a policy for

some time now.

>

> Thank you for your post, and may you continue to take such wonderful care of

your beloved husband.

>

> Regards,

> Helene in NY

> (Mom 77, at home in the Bronx with aides/family pitching in)

>

>

> >

> > Hi all,

> >

> > I've been " lurking " on this list for a long time, learning a great deal but

> > feeling that I have little to contribute. I find it ironic that it's money

> > that has finally encouraged me to post.

> >

> > My husband, Larry, age 72, was diagnosed with LBD almost four years ago,

> > though I'm now certain he was ill for several years before the diagnosis. We

> > live on a fixed income here in the Boston area, supplemented by money we had

> > saved for our retirement. My own health is not great and I am not able to do

> > any sort of lifting, so shortly after the diagnosis, we began to have help

> > in our home about 12 hours a week, at the rate of $18 an hour. As time

> > passed and his illness worsened, Larry began attending a wonderful adult day

> > program ($79 per day, 5 days per week, 9:00 am to 3:00 pm, give or take half

> > an hour on each end, excluding transportation costs and time). Fortunately,

> > he is still doing well in the program, but we have come to need the help of

> > aides much of the rest of the time. Most of the hours are covered by

> > private aides, who charge $20 per hour from 7:00 am to 7:00 pm, and $15 per

> > hour for evenings and overnight. Two nights a week we use an aide from an

> > agency that charges $26 per hour for her services, of which she keeps $18.

> > (We began the overnight coverage at the insistence of both Larry's docs and

> > mine, since I was getting little to no sleep and his physical needs had

> > become too difficult for me to manage.)

> >

> > We could find a somewhat less expensive agency, probably at the rate of $22

> > to $24 per hour, but we have already had two very negative experiences with

> > other agencies, one involving the theft of two expensive and sentimentally

> > irreplaceable pieces of jewelry. So I decided to use the agency recommended

> > by an elder care counselor who has worked with us from time to time. She has

> > known and trusted the agency and its staff for many years. I have also

> > learned that without a " deep bench " of private aides available to substitute

> > on short notice or to fill in during vacations, it is necessary to maintain

> > a good relationship with an agency. Reliable recommendations for private

> > aides, in my experience, usually come by word of mouth and are thus hard to

> > find. And once an aide has been placed in your home by an agency, she/he is

> > contractually prohibited from working for you privately, much as you both

> > may wish it. If you do the math, all of this is exorbitantly expensive, up

> > to $12,000 per month when we need to use extra agency time.

> >

> > We are not wealthy by any means, but made the fortunate decision to buy very

> > good long term care policies several years ago. We could not easily afford

> > the premiums, but we paid them in the hopes that we could both remain at

> > home indefinitely in case of any illness without overburdening our children,

> > who live in various parts of the county.

> >

> > At the time we purchased the policies, we lived in New York and bought

> > policies whose daily rate equaled the average daily rate of a nursing home

> > in our area. The policies also include a 5% annual increase for inflation.

> > For some reason I'm not aware of or can't remember, my policy compounds the

> > 5% increase, while Larry's just adds the 5% to the base amount. Would that

> > it had been the other way around! Larry's policy has now, of course, come

> > into play. It will cover him indefinitely, unlike some policies that have a

> > four- or five-year coverage limit. It currently pays $310 per day. (I have

> > recently read in more than one place that most insurance companies have

> > stopped selling policies as good as ours, and some have stopped selling long

> > term care policies entirely. I am deeply grateful that at the time we bought

> > ours, Larry seemed to be in perfect health.)

> >

> > To me, $310 a day sounds like a lot of money -- but it turns out not to be.

> > I am still about $2500 short at the end of each month, which I pay out of

> > our steadily dwindling investments. In contrast, the best assisted living

> > facility I have found in our area costs about $7900 per month for a

> > " high-functioning " memory-impaired person like Larry. To me, this seems

> > inconceivable, totally upside down: the " best healthcare system in the

> > world " makes it so much more expensive to keep my dear husband, my best

> > friend with whom I have shared so many happy years, at home, rather than to

> > send him away.

> >

> > Larry will be able to continue at the day program so long as his behavior

> > does not harm others or himself; he does not wander; and he does not require

> > a " double assist " in order to use the toilet, get out of a chair, or perform

> > other ADLs. If he can no longer attend the program, the cost of home

> > assistance will become prohibitive and I will be forced to place him in a

> > facility of some kind. I have been cautioned by several experts that if I

> > wait too long to place him, he may no longer qualify for assisted living and

> > he may need to be placed in a nursing home. Of course, the right time is

> > impossible to determine. And the very thought of telling him that he can't

> > come home breaks my heart.

> >

> > I feel guilty when I read some of your posts about the level of care you

> > give on your own, the distances you must drive, the costs you must shoulder

> > without benefit of insurance coverage. Managing all these aides and

> > insurance claims and medical appointments and other tasks while I am not in

> > the best of health, while living in a small apartment that gives us

> > virtually no privacy, feels like I'm running a small business in an industry

> > I despise -- but it is nothing compared to what many of you do. I feel that

> > I should be able to do more for Larry on my own. But I can't. I admire what

> > you are doing so much and wish you continued strength.

> >

> > This post is outrageously long. I hope it gives you some useful information.

> >

> > With admiration and warm regards,

> > Lois ( " GrammaLo " )

> >

> >

> >

[Guest guest]

Dear Judy,

Thank you so much for the info! I will try to get to some of this next week,

and will email you directly, too! There are two lovely sisters who take care of

their mother that live in Yonkers, that drive out to a support I belong to on

Long Island.

My Mom is still in her house between Allerton and Adee Avenue near Laconia

Avenue. I used to love to go to The Venice Italian Restaurant on bridge

Road on Pelham Pkwy South. Sadly, the owner passed away, and the restaurant is

now something different.. but there is still Enzo's a couple of blocks down on

the other side of bridge Road.

We will chat soon!

Helene

> > >

> > > Hi all,

> > >

> > > I've been " lurking " on this list for a long time, learning a great deal

but

> > > feeling that I have little to contribute. I find it ironic that it's money

> > > that has finally encouraged me to post.

> > >

> > > My husband, Larry, age 72, was diagnosed with LBD almost four years ago,

> > > though I'm now certain he was ill for several years before the diagnosis.

We

> > > live on a fixed income here in the Boston area, supplemented by money we

had

> > > saved for our retirement. My own health is not great and I am not able to

do

> > > any sort of lifting, so shortly after the diagnosis, we began to have help

> > > in our home about 12 hours a week, at the rate of $18 an hour. As time

> > > passed and his illness worsened, Larry began attending a wonderful adult

day

> > > program ($79 per day, 5 days per week, 9:00 am to 3:00 pm, give or take

half

> > > an hour on each end, excluding transportation costs and time).

Fortunately,

> > > he is still doing well in the program, but we have come to need the help

of

> > > aides much of the rest of the time. Most of the hours are covered by

> > > private aides, who charge $20 per hour from 7:00 am to 7:00 pm, and $15

per

> > > hour for evenings and overnight. Two nights a week we use an aide from an

> > > agency that charges $26 per hour for her services, of which she keeps $18.

> > > (We began the overnight coverage at the insistence of both Larry's docs

and

> > > mine, since I was getting little to no sleep and his physical needs had

> > > become too difficult for me to manage.)

> > >

> > > We could find a somewhat less expensive agency, probably at the rate of

$22

> > > to $24 per hour, but we have already had two very negative experiences

with

> > > other agencies, one involving the theft of two expensive and sentimentally

> > > irreplaceable pieces of jewelry. So I decided to use the agency

recommended

> > > by an elder care counselor who has worked with us from time to time. She

has

> > > known and trusted the agency and its staff for many years. I have also

> > > learned that without a " deep bench " of private aides available to

substitute

> > > on short notice or to fill in during vacations, it is necessary to

maintain

> > > a good relationship with an agency. Reliable recommendations for private

> > > aides, in my experience, usually come by word of mouth and are thus hard

to

> > > find. And once an aide has been placed in your home by an agency, she/he

is

> > > contractually prohibited from working for you privately, much as you both

> > > may wish it. If you do the math, all of this is exorbitantly expensive, up

> > > to $12,000 per month when we need to use extra agency time.

> > >

> > > We are not wealthy by any means, but made the fortunate decision to buy

very

> > > good long term care policies several years ago. We could not easily afford

> > > the premiums, but we paid them in the hopes that we could both remain at

> > > home indefinitely in case of any illness without overburdening our

children,

> > > who live in various parts of the county.

> > >

> > > At the time we purchased the policies, we lived in New York and bought

> > > policies whose daily rate equaled the average daily rate of a nursing home

> > > in our area. The policies also include a 5% annual increase for inflation.

> > > For some reason I'm not aware of or can't remember, my policy compounds

the

> > > 5% increase, while Larry's just adds the 5% to the base amount. Would that

> > > it had been the other way around! Larry's policy has now, of course, come

> > > into play. It will cover him indefinitely, unlike some policies that have

a

> > > four- or five-year coverage limit. It currently pays $310 per day. (I have

> > > recently read in more than one place that most insurance companies have

> > > stopped selling policies as good as ours, and some have stopped selling

long

> > > term care policies entirely. I am deeply grateful that at the time we

bought

> > > ours, Larry seemed to be in perfect health.)

> > >

> > > To me, $310 a day sounds like a lot of money -- but it turns out not to

be.

> > > I am still about $2500 short at the end of each month, which I pay out of

> > > our steadily dwindling investments. In contrast, the best assisted living

> > > facility I have found in our area costs about $7900 per month for a

> > > " high-functioning " memory-impaired person like Larry. To me, this seems

> > > inconceivable, totally upside down: the " best healthcare system in the

> > > world " makes it so much more expensive to keep my dear husband, my best

> > > friend with whom I have shared so many happy years, at home, rather than

to

> > > send him away.

> > >

> > > Larry will be able to continue at the day program so long as his behavior

> > > does not harm others or himself; he does not wander; and he does not

require

> > > a " double assist " in order to use the toilet, get out of a chair, or

perform

> > > other ADLs. If he can no longer attend the program, the cost of home

> > > assistance will become prohibitive and I will be forced to place him in a

> > > facility of some kind. I have been cautioned by several experts that if I

> > > wait too long to place him, he may no longer qualify for assisted living

and

> > > he may need to be placed in a nursing home. Of course, the right time is

> > > impossible to determine. And the very thought of telling him that he can't

> > > come home breaks my heart.

> > >

> > > I feel guilty when I read some of your posts about the level of care you

> > > give on your own, the distances you must drive, the costs you must

shoulder

> > > without benefit of insurance coverage. Managing all these aides and

> > > insurance claims and medical appointments and other tasks while I am not

in

> > > the best of health, while living in a small apartment that gives us

> > > virtually no privacy, feels like I'm running a small business in an

industry

> > > I despise -- but it is nothing compared to what many of you do. I feel

that

> > > I should be able to do more for Larry on my own. But I can't. I admire

what

> > > you are doing so much and wish you continued strength.

> > >

> > > This post is outrageously long. I hope it gives you some useful

information.

> > >

> > > With admiration and warm regards,

> > > Lois ( " GrammaLo " )

> > >

> > >

> > >

[Guest guest]

Hi Helene

So goof to hear from you ! It's still night here - actually early in the morning

4 ish and I was delighted to pick up your message! I have several places

For to eat around the Riverdale area - although I am not familiar with the ones

You mentioned I know where allerton ave is Nd

Would have no problem finding where you are!

I can't wait to hear from you and to meet with you! I will also be happy to find

a support group as sometimes unthinkable this whole LBD journey is a trip too

hard to go thru alone ! I have my brother to

Share it with, bit that is not enough - so it will be Lovely to have you and

perhaps the sisters in Yonkers to get to know ..,

Speak with u soon - I look forward to hearing from you whenever you find the

time to call !!

Best,

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,

> Thank you so much for the info! I will try to get to some of this next week,

and will email you directly, too! There are two lovely sisters who take care of

their mother that live in Yonkers, that drive out to a support I belong to on

Long Island.

>

> My Mom is still in her house between Allerton and Adee Avenue near Laconia

Avenue. I used to love to go to The Venice Italian Restaurant on bridge

Road on Pelham Pkwy South. Sadly, the owner passed away, and the restaurant is

now something different.. but there is still Enzo's a couple of blocks down on

the other side of bridge Road.

>

> We will chat soon!

> Helene

>

>

> > > >

> > > > Hi all,

> > > >

> > > > I've been " lurking " on this list for a long time, learning a great deal

but

> > > > feeling that I have little to contribute. I find it ironic that it's

money

> > > > that has finally encouraged me to post.

> > > >

> > > > My husband, Larry, age 72, was diagnosed with LBD almost four years ago,

> > > > though I'm now certain he was ill for several years before the

diagnosis. We

> > > > live on a fixed income here in the Boston area, supplemented by money we

had

> > > > saved for our retirement. My own health is not great and I am not able

to do

> > > > any sort of lifting, so shortly after the diagnosis, we began to have

help

> > > > in our home about 12 hours a week, at the rate of $18 an hour. As time

> > > > passed and his illness worsened, Larry began attending a wonderful adult

day

> > > > program ($79 per day, 5 days per week, 9:00 am to 3:00 pm, give or take

half

> > > > an hour on each end, excluding transportation costs and time).

Fortunately,

> > > > he is still doing well in the program, but we have come to need the help

of

> > > > aides much of the rest of the time. Most of the hours are covered by

> > > > private aides, who charge $20 per hour from 7:00 am to 7:00 pm, and $15

per

> > > > hour for evenings and overnight. Two nights a week we use an aide from

an

> > > > agency that charges $26 per hour for her services, of which she keeps

$18.

> > > > (We began the overnight coverage at the insistence of both Larry's docs

and

> > > > mine, since I was getting little to no sleep and his physical needs had

> > > > become too difficult for me to manage.)

> > > >

> > > > We could find a somewhat less expensive agency, probably at the rate of

$22

> > > > to $24 per hour, but we have already had two very negative experiences

with

> > > > other agencies, one involving the theft of two expensive and

sentimentally

> > > > irreplaceable pieces of jewelry. So I decided to use the agency

recommended

> > > > by an elder care counselor who has worked with us from time to time. She

has

> > > > known and trusted the agency and its staff for many years. I have also

> > > > learned that without a " deep bench " of private aides available to

substitute

> > > > on short notice or to fill in during vacations, it is necessary to

maintain

> > > > a good relationship with an agency. Reliable recommendations for private

> > > > aides, in my experience, usually come by word of mouth and are thus hard

to

> > > > find. And once an aide has been placed in your home by an agency, she/he

is

> > > > contractually prohibited from working for you privately, much as you

both

> > > > may wish it. If you do the math, all of this is exorbitantly expensive,

up

> > > > to $12,000 per month when we need to use extra agency time.

> > > >

> > > > We are not wealthy by any means, but made the fortunate decision to buy

very

> > > > good long term care policies several years ago. We could not easily

afford

> > > > the premiums, but we paid them in the hopes that we could both remain at

> > > > home indefinitely in case of any illness without overburdening our

children,

> > > > who live in various parts of the county.

> > > >

> > > > At the time we purchased the policies, we lived in New York and bought

> > > > policies whose daily rate equaled the average daily rate of a nursing

home

> > > > in our area. The policies also include a 5% annual increase for

inflation.

> > > > For some reason I'm not aware of or can't remember, my policy compounds

the

> > > > 5% increase, while Larry's just adds the 5% to the base amount. Would

that

> > > > it had been the other way around! Larry's policy has now, of course,

come

> > > > into play. It will cover him indefinitely, unlike some policies that

have a

> > > > four- or five-year coverage limit. It currently pays $310 per day. (I

have

> > > > recently read in more than one place that most insurance companies have

> > > > stopped selling policies as good as ours, and some have stopped selling

long

> > > > term care policies entirely. I am deeply grateful that at the time we

bought

> > > > ours, Larry seemed to be in perfect health.)

> > > >

> > > > To me, $310 a day sounds like a lot of money -- but it turns out not to

be.

> > > > I am still about $2500 short at the end of each month, which I pay out

of

> > > > our steadily dwindling investments. In contrast, the best assisted

living

> > > > facility I have found in our area costs about $7900 per month for a

> > > > " high-functioning " memory-impaired person like Larry. To me, this seems

> > > > inconceivable, totally upside down: the " best healthcare system in the

> > > > world " makes it so much more expensive to keep my dear husband, my best

> > > > friend with whom I have shared so many happy years, at home, rather than

to

> > > > send him away.

> > > >

> > > > Larry will be able to continue at the day program so long as his

behavior

> > > > does not harm others or himself; he does not wander; and he does not

require

> > > > a " double assist " in order to use the toilet, get out of a chair, or

perform

> > > > other ADLs. If he can no longer attend the program, the cost of home

> > > > assistance will become prohibitive and I will be forced to place him in

a

> > > > facility of some kind. I have been cautioned by several experts that if

I

> > > > wait too long to place him, he may no longer qualify for assisted living

and

> > > > he may need to be placed in a nursing home. Of course, the right time is

> > > > impossible to determine. And the very thought of telling him that he

can't

> > > > come home breaks my heart.

> > > >

> > > > I feel guilty when I read some of your posts about the level of care you

> > > > give on your own, the distances you must drive, the costs you must

shoulder

> > > > without benefit of insurance coverage. Managing all these aides and

> > > > insurance claims and medical appointments and other tasks while I am not

in

> > > > the best of health, while living in a small apartment that gives us

> > > > virtually no privacy, feels like I'm running a small business in an

industry

> > > > I despise -- but it is nothing compared to what many of you do. I feel

that

> > > > I should be able to do more for Larry on my own. But I can't. I admire

what

> > > > you are doing so much and wish you continued strength.

> > > >

> > > > This post is outrageously long. I hope it gives you some useful

information.

> > > >

> > > > With admiration and warm regards,

> > > > Lois ( " GrammaLo " )

> > > >

> > > >

> > > >