RE: Re: update on Dad

[Guest guest]

Hi ,

I so understand what you're going through. A year and a half ago I was in

the same place.

It's such a hard shift in roles that children of adult parents have to make

- when to step in and just do what needs to be done while maintaining their

dignity. It's one of the hardest things I've ever done. My life was a

living hell for almost a year with 24 hr care and it still didn't work.

You'll reach that point when you just know it's for your parents' good and

you and your sister's good to take action. When my mom was refusing help I

told her " Well, the doctors and nurses say you cannot be on your own " . For

some reason that worked with my mom. My sister lived with her at the time

and even she couldn't get her to shower or sleep in her bed or not get up

without help. The rehab therapists put big signs all over the wall saying

" Ask for help before getting up " for her to see and she just ignored them.

She just falls over sometimes standing still with her walker. She too has

extreme problems walking - mostly from severe spine and neck problems - and

now Parkinson's is added in the mix too.

Her diagnosis this past May of Lewy Body Dementia made things so much

clearer. Has your mom been diagnosed with dementia? It sounds like

" showtime " . Mom was and still is very controlling and bossy and would lie

to everyone - her family, her friends, her doctors, nurses, etc.

Eventually it all caught up with her and she got bedsores along with her

many other medical problems. This required home health care and the truth

came out. They said she required 24/7 care and she had to listen.

My heart goes out to you and your sister and your parents. This journey

with Lewy Body Dementia and all the other health problems combined can tax

you to the max. We did 24 hr care for a while (between my sister and I and

CNA's) but it was more than any of us could handle. The assisted living

facility she was in first was amazing. They are trained to deal with all

the medical and psychological problems. There are people for everything -

bathing, toileting, rehab, meals, house cleaning, and nurses to administer

her meds - boy was that a relief. And no one or two people bear most of

the 24/7 burden. She's in a dementia care facility now since the assisted

living facility couldn't handle all her needs either.

God bless you . Take care of yourself - the past few years have taken

a toll on my health and if I had it to do over I would have intervened much

sooner.

Marcie

_____

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of hanleylin@...

Sent: Monday, July 25, 2011 6:52 AM

To: LBDcaregivers

Subject: Re: update on Dad

Hi

My Dad fell and was in hospital from June 12 to June 15, then released to

Rehab for 3 more weeks - then he learned to stand and use walker. (he was

doing pretty good before the fall - and he didn't break anything).

Social worker and P.T said he is at high risk of falling (he stiffens up and

falls backwards) and needs help with his ADL's and needs 24 hour

supervision. My mother is 85 and tried to help him - my sister goes everyday

and I go a couple times a week due to it is an hour away.

My mother agreed to hiring a 24 hour help - then when we got him home she

said maybe 8 hour help - then it changed to 4 hours in the afternoon - now

she wants to go down to 2 hours ! My sister can't do everything anymore and

she is the one that hired the CNA. Mom calls my sister everyday and says

they don't want the nurse anymore at the house. Well the nurse (cna) bathes

him and walks him and does all his P.T. exercises and helps start dinner. My

mother can't do any of that - she says she bathes him - but we learned that

she does not. Also, the CNA looks for bedsores and she is just great. My mom

is very strong-willed and bossy - and she is telling us she doesn't want

help - she says Dad doesn't want it. Well, he has dementia, walks like a

drunken sailor and I am scared to death he will fall. Mom refuses to install

a handrail on the front door so he can grab it - once he reaches the top

step - he falls backwards. She said " he will go in the side door where there

is a rail to grab " . I was there the other day and he went out the front door

and tried to go back in - so she didn't stop him from going int he door that

he had the bad fall backwards on. So the other day, my sister and I grabbed

him on the threshold and pushed him when he leaned back, in the nick opf

time.

The social worker at the Rehab place said " you can't trust his judement - he

has dementia " I mother agreed. but now, she says " I'll ask him what he

thinks - " he doesn't want the helper anymore, he doesn't want the special

walker " and on and on.

So my sister had to " straighten her out " - just spoke strongly and said we

are going to have the CNA - but everyday Mom asks to get rid of her. Without

her, Dad would be in his chair in TV room, would not get bathed , walked or

do his P.T. And he would definitely, without a doubt - fall down again and

soon ! Everyday when I call, I am shocked and grateful that he has not

fallen.

I don't know why I wrote - because this is so hard - to try to be boss of

your parents because you want them to be OK !

thanks for listening.

H

[Guest guest]

H.,

I hope you don't take this wrong, but either your mother is in complete denial

and does not really understand how LBD is only progressively worse and is

terminal, and /or your Mother also is developing some type of dementia.  Is

there a senior diagnostic center with psychologists and doctors familiar with

LBD that you can take her to for a thourough mental exam and evaluation of her

mental state?  Maybe both of your parents have dementia!  The situation sounds

as if it is not safe for your father to be home alone with your Mother.  Have

you discussed all of your insights and observations with his doctors?  Are the

docs aware that your Mother is no longer cabable of making sensible decisions

about his care?  This could be life threatening for your Father if she is

unable to say no to anything he says he wants.  You need to report this to his

doctors before something bad happens there.  It sounds like a case of

possible neglect to me, or your

mother is no longer cabable of making decisions intelligently.

Pat M.

Subject: Re: update on Dad

To: LBDcaregivers

Date: Tuesday, July 26, 2011, 4:31 PM

 

Attention Marcie

Thank you for your kind understanding - what is " showtime " what is " sundowning " .

?

My mother has not been diagnosed with dementia - she pays all the bills, runs

the house, grocery shops, arranges for all the repair-men, etc. - and she seems

very " with-it " . But we are now wondering - when she says she understands Dad has

advanced Parkinsons, LBD and significant Dementia - then she says to us " let me

ask Dad - Dad doesn't want a CNA, Dad doesn't want the bench for bathing, the

walker, and on and on.

She doesn't want the handrail on the main door of the house. Last year when he

came home from Rehab, we had that special bench that goes on outside and inside

of tub and special walkers, etc. P.T. told her this is progressive, and he will

not be getting better, only worse. She said she understood. Then his walking

started to look good. He wanted to go upstairs and start sleeping upstairs - so

Mom say OK.

Mom brought that bathing bench back to the senior center and said she doesn't

need it anymore and Dad can bathe himself. She said he can go up the stairs,

because he wants to.

That is not true.

Now his bed is on the main floor in living room, and before long, he will say he

wants to go upstairs and Mom will say Fine - he " wanted " to.

I am frustrated right now.

H

[Guest guest]

, we went thru this with my mom who seemed to be in denial about my Dad’s

ability until she reached a point where it was clear, she needed to do more. My

Dad also has Parkinsons, LBD, and heart condition as well - - was home until

there were too many falls, trips to ER, decline in health and dementia, the Dr

ordered Long Term Care Facility. He has been in LTC since last Sept, not without

a lot of educating and headaches with staff, change in facilities, and etc.

Agree with Pat, go with your mom to the next dr appt to be part of the

discussions.

~Sheri

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of Pat Machkovich

Sent: Tuesday, July 26, 2011 2:25 PM

To: LBDcaregivers

Subject: Re: Re: update on Dad

H.,

I hope you don't take this wrong, but either your mother is in complete denial

and does not really understand how LBD is only progressively worse and is

terminal, and /or your Mother also is developing some type of dementia. Is

there a senior diagnostic center with psychologists and doctors familiar with

LBD that you can take her to for a thourough mental exam and evaluation of her

mental state? Maybe both of your parents have dementia! The situation sounds

as if it is not safe for your father to be home alone with your Mother. Have

you discussed all of your insights and observations with his doctors? Are the

docs aware that your Mother is no longer cabable of making sensible decisions

about his care? This could be life threatening for your Father if she is unable

to say no to anything he says he wants. You need to report this to his doctors

before something bad happens there. It sounds like a case of possible neglect

to me, or your

mother is no longer cabable of making decisions intelligently.

Pat M.

From: hanleylin@... <mailto:hanleylin%40aol.com> <hanleylin@...

<mailto:hanleylin%40aol.com> >

Subject: Re: update on Dad

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

Date: Tuesday, July 26, 2011, 4:31 PM

Attention Marcie

Thank you for your kind understanding - what is " showtime " what is " sundowning " .

?

My mother has not been diagnosed with dementia - she pays all the bills, runs

the house, grocery shops, arranges for all the repair-men, etc. - and she seems

very " with-it " . But we are now wondering - when she says she understands Dad has

advanced Parkinsons, LBD and significant Dementia - then she says to us " let me

ask Dad - Dad doesn't want a CNA, Dad doesn't want the bench for bathing, the

walker, and on and on.

She doesn't want the handrail on the main door of the house. Last year when he

came home from Rehab, we had that special bench that goes on outside and inside

of tub and special walkers, etc. P.T. told her this is progressive, and he will

not be getting better, only worse. She said she understood. Then his walking

started to look good. He wanted to go upstairs and start sleeping upstairs - so

Mom say OK.

Mom brought that bathing bench back to the senior center and said she doesn't

need it anymore and Dad can bathe himself. She said he can go up the stairs,

because he wants to.

That is not true.

Now his bed is on the main floor in living room, and before long, he will say he

wants to go upstairs and Mom will say Fine - he " wanted " to.

I am frustrated right now.

H

[Guest guest]

Hi ,

" Showtime " and " sundowning " are both symptoms of dementia. " Showtime "

I've just learned is specific to LBD. It's when someone with LBD can

literally put on a " show " by somehow changing their normal behavior and

personality to appear " almost normal " . It doesn't seem possible from a

scientific stand point but it happened so many times with my mom (especially

at dr. and specialist appts) and I would be furious. She used to tell me

not to speak to the doctors - it was her doctor appointment and to keep my

mouth shut. I then started slipping notes to the doctors but she would ask

to see the note. How she pulled off these episodes was astonishing. My

sister and I used to think it was our fault that she acted so differently at

home. It was so frustrating - we didn't know what was going on. Oh how I

wish we had known about Lewy Body dementia two years ago!

" Sundowning " is when a person with dementia becomes more confused and

sometimes agitated later in the day, thus the term " sundowning " . There are

several theories, too much stimulation during the day, sleep and mood

disorders, and others. They really don't know for sure.

Your mom and mine seem very alike. My mom's cognitive functions were

affected first - her ability to reason. It sounds like it's the same for

your mom. In other areas my mom was fine. She was a teacher and college

professor and rules were to be followed. But suddenly rules were to be

broken. She refused to do so many things she was told she needed to do.

The most important were not getting up by herself and using her walker -

these were safety issues - she was not allowed to get up by herself yet she

did constantly and I mean every 5 minutes by herself. She just lost the

ability to reason. Your mom doesn't sound capable of handling your

father's safety issues either. That is dangerous. My suggestion would be

to have 24/7 care as we did since your mom doesn't seem capable of handling

these areas of your dad's care.

And you may want to have a family meeting with your mom's doctor to address

her issues. I know this is hard to hear. None of us want to step and

pull rank on our parents. But it has to be done. And yes they will get

angry and say all sorts of mean things, but it's for their safety that we do

it. For so long I tried to reason and explain everything to my mom, but it

was mostly a waste of time. Mostly she couldn't understand, her brain

doesn't let her anymore. Don't take it personally. For me the anger and

frustration came from believing she was deliberately doing these things.

Like you say your mom is still capable in so many other areas. It took a

long while for me to realize that it was the disease (for the most part -

she's always been controlling though) in that area of her brain.

Hang in there - I'll keep you in my prayers.

Marcie

_____

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of hanleylin@...

Sent: Tuesday, July 26, 2011 4:31 PM

To: LBDcaregivers

Subject: Re: update on Dad

Attention Marcie

Thank you for your kind understanding - what is " showtime " what is

" sundowning " . ?

My mother has not been diagnosed with dementia - she pays all the bills,

runs the house, grocery shops, arranges for all the repair-men, etc. - and

she seems very " with-it " . But we are now wondering - when she says she

understands Dad has advanced Parkinsons, LBD and significant Dementia - then

she says to us " let me ask Dad - Dad doesn't want a CNA, Dad doesn't want

the bench for bathing, the walker, and on and on.

She doesn't want the handrail on the main door of the house. Last year when

he came home from Rehab, we had that special bench that goes on outside and

inside of tub and special walkers, etc. P.T. told her this is progressive,

and he will not be getting better, only worse. She said she understood. Then

his walking started to look good. He wanted to go upstairs and start

sleeping upstairs - so Mom say OK.

Mom brought that bathing bench back to the senior center and said she

doesn't need it anymore and Dad can bathe himself. She said he can go up the

stairs, because he wants to.

That is not true.

Now his bed is on the main floor in living room, and before long, he will

say he wants to go upstairs and Mom will say Fine - he " wanted " to.

I am frustrated right now.

H

[Guest guest]

" Sundowning " is how nervous and upset they usually get about the time the sun

goes down.

" Showtime " is what they with people who might not know they have dementia, MD,

siblings and others and they make you look

" crazy " because they remember every possible thing and they do it without

skipping a beat.. LOL And as soon as everyone else leaves, they can't remember

where their hands are located!

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

Re: update on Dad

Attention Marcie

Thank you for your kind understanding - what is " showtime " what is

" sundowning " . ?

My mother has not been diagnosed with dementia - she pays all the bills, runs

the house, grocery shops, arranges for all the repair-men, etc. - and she seems

very " with-it " . But we are now wondering - when she says she understands Dad

has advanced Parkinsons, LBD and significant Dementia - then she says to us

" let me ask Dad - Dad doesn't want a CNA, Dad doesn't want the bench for

bathing, the walker, and on and on.

She doesn't want the handrail on the main door of the house. Last year when he

came home from Rehab, we had that special bench that goes on outside and inside

of tub and special walkers, etc. P.T. told her this is progressive, and he will

not be getting better, only worse. She said she understood. Then his walking

started to look good. He wanted to go upstairs and start sleeping upstairs - so

Mom say OK.

Mom brought that bathing bench back to the senior center and said she doesn't

need it anymore and Dad can bathe himself. She said he can go up the stairs,

because he wants to.

That is not true.

Now his bed is on the main floor in living room, and before long, he will say he

wants to go upstairs and Mom will say Fine - he " wanted " to.

I am frustrated right now.

H

[Guest guest]

Hi ,

It's a fine line to walk bringing in help against your parents' wishes. I

can only talk about my mom's situation - she was extremely controlling and

she ruled her house. You never tell them you're taking over - you let them

think they're still in control of their lives. It's a process, you can

tell them you just need a little help. Sometimes you have to try a few

people before you find someone they really like. I think your sister's

right about keeping them in their home as long as you can. In the end we

ran out of money and had to sell the house to afford her care. It was

cheaper for her to go into assisted living. For one monthly fee everything

is taken care of. And her health and behavioral problems were so beyond

our ability to handle. She listened much better when was out of her home

and honestly they didn't lose it like we did on an almost daily basis

because there are so many trained, qualified people - I bless them every day

for what they do. But every situation is unique. And you have two parents

to consider which makes it more difficult. I wish I could say it was an

easy path, but it wasn't. I can't tell you how many avenues I explored -

I had no knowledge about anything. Of course I only had my mom to deal

with. I can't imagine having two parents to care for at the same time.

Take one day at a time. My hairdresser gave me this bit of advice God

Bless her - when you come to the conclusion that your mom would receive

better care in a facility than you can provide for her at home, then you'll

know it's time to do that.

I swore to myself and my mom that I would never put her into a nursing home.

I realize that I made that statement from a place of love, but ignorance

about how hard it is dealing with a parent who is ill. Hopefully, you won't

have to do that. Hopefully in home care will work for you. Every person

is different.

Good luck - it'll all work out. Yes, I'd have a meeting with the Dr. ASAP.

Dad's care needs to be your first priority. Life sure is interesting, isn't

it? You have to laugh but I know that's hard when you're in the thick of

it. I'm sure there are many others in this group with great advice too!

Take care.

Marcie

_____

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of hanleylin@...

Sent: Wednesday, July 27, 2011 8:04 AM

To: LBDcaregivers

Subject: Re: update on Dad

Thank you Marcie and everyone.

I know that soon Mom won't be capable and we are looking at 2 parents with

dementia ! But, Mom is extremely bossy, I have never stood up to her before

and she does pay all the bills, and run the house - the only area she has

dementia is in the denial about Dad. My sister is the one that is there

everyday and she has strong feelings about this and wants to keep them home

- she says its cheaper to keep them home and hire 24/7 help then go to a

home - is that true?

What would be first steps to take over the situation - would it be a meeting

with the dr?

thanks

H

[Guest guest]

Hi

I have been watching the boards - I remain a silent observer but like to pop in

of there is something of value that I may add!

Be able to add!

In this case in regard to home care vs. Nursing home I would just like to share

with u my experience with mom who has had home care for over 2 yrs now- 24/7 !

Mom lives in NYC where I believe most things generally might be more expensive -

we kept mom at home first because when she could talk and think critically - she

insisted on staying at home - she is a widow and had strong feelings on the

confirm of aging in. Little did we know how quickly the LBD would steal her life

- and this would be an expense we would be incurring -

For us the first expense was in making the apt suitable for home care- the

bathroom and room for the live in was not too bad -app. 10,000- mom had the $ so

that was ok

Since then we employ 2 women - one who stays most of

The time and the other who comes 3 times a week for 4 hrs each dAy to relieve

- the main caregiver !

Costs- app. 1200 a week just for the help -4800 a month

I am told that this is s bargain (lol) compared to a nursing home in dementia

unit runs over 10,000 a month -could be up to 15,000 a month

Het other expenses app. 2500 a month - all of this exceeds her overall income

and it's getting scary that the $ is decreasing at a crazy pace

I hope this gives you a rough idea and some insight into the costa

Best,

Judy

Office email:

Jrstr@...

Sent from my iPhone

> Thank you Marcie and everyone.

> I know that soon Mom won't be capable and we are looking at 2 parents with

dementia ! But, Mom is extremely bossy, I have never stood up to her before and

she does pay all the bills, and run the house - the only area she has dementia

is in the denial about Dad. My sister is the one that is there everyday and she

has strong feelings about this and wants to keep them home - she says its

cheaper to keep them home and hire 24/7 help then go to a home - is that true?

>

> What would be first steps to take over the situation - would it be a meeting

with the dr?

>

> thanks

>

> H

>

>

[Guest guest]

I too am a fairly silent observer. My dad was diagnosed with LBD about 2 years

ago, and passed away on June 3rd of this year. He also had terminal cancer.

My parents live with myself, my husband, and 6 children. We promised my dad when

he got diagnosed with cancer 5 years ago that we would do everything in our

power to keep him home. There were occasions when he did go into rehab after a

fall, or when his meds needed tweaking. Because of the cancer, and his chemo,

his mediations were always changing, which as many of you know is a big " no-no "

with LBD. Near the end of his life he was a great deal of care, but one of the

many advantages to having a large family is that there was always someone around

to be able to help him. My dad, even through his failing health was nearly

200lbs, and my mom is about 100lbs soaking wet. My dad had gotten to the point

that he " forgot " that he was not able to walk. Being a VERY independent man, he

always wanted to do for himself. However, he was not physically able to walk, or

if he could, only for short distances. This caused a problem because he would

sometimes walk into the kitchen (with a walker with a seat), but forgot to sit

down on it, or forgot how to get back to his chair. Instead, he would just drop.

This also occurred all night long. if he was particularly bad, we would give him

seraquel (sp?), and that would help, but we tried not to use it unless

necessary. He was in a hospital bed, and we would take shifts sleeping in the

bed next to him. This came after one fall where we did not find him until

morning. We also told him at night, when we would put him to bed that he had to

stay put till morning, or he would fall and have to go into rehab (which he

HATED). For the most part he would remember that.

We did look into a NH for him, but found that it would run about 10-14k a month.

This assuming he was still somewhat able to care for himself. If he needed 24/7

care, the cost went upwards to 17k a month! We live in a fairly rural area, and

the available choices for NH's are minimal. The best one was 15k a month, and

about 45 minutes away. This did not even include the 5k a month for his cancer

meds, which we were already paying! My mom, who does not drive due to eye-site,

did not want him to go there. She knew with my young, busy family, he would

depend on me for visits, and that an hour and 1/2 round trip just in driving

would be very difficult. I homeschool my brood, and therefor taking a day to

visit, would be very difficult. I also had the added issue of having a baby born

with a severe birth defect which landed baby and me in Boston Children's for 2

months, and off and on since then. To say this year has been trying, would at

times understate things. During my absence, my older children cared for the

youngers, and that left a great deal of care for my dad upon my mom, and my

husband, who works 12+ hours a day. It was during this time we hired a home

health nurse. She came 3 times a week to help with his basic care, including

shaving, bathing changing his sheets etc etc. This was a reasonable cost as

medicare did cover some of it. His meals and such were not a problem because

whatever my teens made for the littles, they would just bring some to my mom and

dad.

Once I came home from Boston, we were able to have the nurse come only once a

week. Although my dad is very missed, we are so grateful we were able to keep

our commitment to him, and have him pass at home. Keeping a LO at home is not

easy, but I can also say that putting them in a NH is not easy either. They

don't care for them like you would, and the cost is often prohibitive. It was

suggested by one facility that some people will often mortgage their home to pay

for the expense of the NH. I have a young family, and just did not feel that was

a good option for us. All in all, I am very pleased he stayed home. It also gave

my children some very precious time with him. I am going to be very honest, when

it was some of the kids turn to " babysit " Papa, they were not always excited

about it. He was often demanding, agitated, and sometimes downright mean. I kept

reminding the children not to take it personally, and the nurse would remind

them that he had a " disease that was taking his mind away "

People would tell us to put him in a NH, but what they didn't realize is that

although it would alleviate some of his care, it did not solve the problem of

his dementia, or the cost to cover it. Not to mention it created a whole other

set of issues to deal with, at least for our family. I am VERY fortunate to be

able to have strong, able-bodied helpers at home, as well as being a stay at

home mom. If I had to work, or even if I didn't, and did not have my children,

we would have been forced to put him in a facility.

Re: Re: update on Dad

Hi

I have been watching the boards - I remain a silent observer but like to pop in

of there is something of value that I may add!

Be able to add!

In this case in regard to home care vs. Nursing home I would just like to share

with u my experience with mom who has had home care for over 2 yrs now- 24/7 !

Mom lives in NYC where I believe most things generally might be more expensive -

we kept mom at home first because when she could talk and think critically - she

insisted on staying at home - she is a widow and had strong feelings on the

confirm of aging in. Little did we know how quickly the LBD would steal her life

- and this would be an expense we would be incurring -

For us the first expense was in making the apt suitable for home care- the

bathroom and room for the live in was not too bad -app. 10,000- mom had the $ so

that was ok

Since then we employ 2 women - one who stays most of

The time and the other who comes 3 times a week for 4 hrs each dAy to relieve

- the main caregiver !

Costs- app. 1200 a week just for the help -4800 a month

I am told that this is s bargain (lol) compared to a nursing home in dementia

unit runs over 10,000 a month -could be up to 15,000 a month

Het other expenses app. 2500 a month - all of this exceeds her overall income

and it's getting scary that the $ is decreasing at a crazy pace

I hope this gives you a rough idea and some insight into the costa

Best,

Judy

Office email:

Jrstr@...

Sent from my iPhone

> Thank you Marcie and everyone.

> I know that soon Mom won't be capable and we are looking at 2 parents with

dementia ! But, Mom is extremely bossy, I have never stood up to her before and

she does pay all the bills, and run the house - the only area she has dementia

is in the denial about Dad. My sister is the one that is there everyday and she

has strong feelings about this and wants to keep them home - she says its

cheaper to keep them home and hire 24/7 help then go to a home - is that true?

>

> What would be first steps to take over the situation - would it be a meeting

with the dr?

>

> thanks

>

> H

>

>

[Guest guest]

Hi and Judy,

That is a wonderful price for around the clock care for your mom.

I didn't know if it was proper to list specifics (my first time on an

internet group).

When my mom was still at home and requiring 24/7 care it cost her between

$8000 & $9000 per month (that's the cost of her home and care). Care was

*$22/hr - sometimes less, sometimes more. My sister and I did a lot. My

sister worked nites so we had to have someone there all night (mom hardly

slept and got up - couldn't be alone). This ate through her savings pretty

quickly. That's why we had to sell her home.

The assisted living was about $5500/month including meds, etc. She's now

in a dementia unit - not a nursing home - and it's about $6500. Both are

wonderful places - the best our area offers. If she would need to go into

the nursing part it's around $12,000/month which we could not afford for any

length of time. As Judy said it's scary that the $ gets used up so fast.

It's sad that she worked so hard during her lifetime, always being so frugal

and careful, to have it go for her care.

Hope this helps.

Marcie

_____

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of Judy

Sent: Wednesday, July 27, 2011 9:15 AM

To: LBDcaregivers

Cc: LBDcaregivers

Subject: Re: Re: update on Dad

Hi

I have been watching the boards - I remain a silent observer but like to pop

in of there is something of value that I may add!

Be able to add!

In this case in regard to home care vs. Nursing home I would just like to

share with u my experience with mom who has had home care for over 2 yrs

now- 24/7 ! Mom lives in NYC where I believe most things generally might be

more expensive - we kept mom at home first because when she could talk and

think critically - she insisted on staying at home - she is a widow and had

strong feelings on the confirm of aging in. Little did we know how quickly

the LBD would steal her life - and this would be an expense we would be

incurring -

For us the first expense was in making the apt suitable for home care- the

bathroom and room for the live in was not too bad -app. 10,000- mom had the

$ so that was ok

Since then we employ 2 women - one who stays most of

The time and the other who comes 3 times a week for 4 hrs each dAy to

relieve - the main caregiver !

Costs- app. 1200 a week just for the help -4800 a month

I am told that this is s bargain (lol) compared to a nursing home in

dementia unit runs over 10,000 a month -could be up to 15,000 a month

Het other expenses app. 2500 a month - all of this exceeds her overall

income and it's getting scary that the $ is decreasing at a crazy pace

I hope this gives you a rough idea and some insight into the costa

Best,

Judy

Office email:

Jrstr@... <mailto:Jrstr%40email.Phoenix.edu>

Sent from my iPhone

On Jul 27, 2011, at 8:04 AM, hanleylin@... <mailto:hanleylin%40aol.com>

wrote:

> Thank you Marcie and everyone.

> I know that soon Mom won't be capable and we are looking at 2 parents with

dementia ! But, Mom is extremely bossy, I have never stood up to her before

and she does pay all the bills, and run the house - the only area she has

dementia is in the denial about Dad. My sister is the one that is there

everyday and she has strong feelings about this and wants to keep them home

- she says its cheaper to keep them home and hire 24/7 help then go to a

home - is that true?

>

> What would be first steps to take over the situation - would it be a

meeting with the dr?

>

> thanks

>

> H

>

>

[Guest guest]

Marcie

Your words ran a chill down my spine in regard to our moms being so frugal their

whole life only to spend it all in the last yearsbwhen they can't really

appreciate it in LBD land !

The assisted living sounds so treasonably priced - since these are private can

you pay out of pocket without having the home hold your mom's assets? I'm not

sure where invade hears this but in NYC the facility takes over the assets and

divies out the pay.

My mom was very average in terms of $ and I just cannot possibly imagine how

people pay for help otherwise - unless Medicaid kicks in ! Unfortunately for

those people who are in the middle and have saved up say 400,000 have to first

spend down all their money and then get Medicaid - again I cannot stress how sad

it is when I watch the funds dissipate one account at a time!

Best,

Judy

Office email:

Jrstr@...

Sent from my iPhone

> Hi and Judy,

>

> That is a wonderful price for around the clock care for your mom.

>

> I didn't know if it was proper to list specifics (my first time on an

> internet group).

>

> When my mom was still at home and requiring 24/7 care it cost her between

> $8000 & $9000 per month (that's the cost of her home and care). Care was

> *$22/hr - sometimes less, sometimes more. My sister and I did a lot. My

> sister worked nites so we had to have someone there all night (mom hardly

> slept and got up - couldn't be alone). This ate through her savings pretty

> quickly. That's why we had to sell her home.

>

> The assisted living was about $5500/month including meds, etc. She's now

> in a dementia unit - not a nursing home - and it's about $6500. Both are

> wonderful places - the best our area offers. If she would need to go into

> the nursing part it's around $12,000/month which we could not afford for any

> length of time. As Judy said it's scary that the $ gets used up so fast.

> It's sad that she worked so hard during her lifetime, always being so frugal

> and careful, to have it go for her care.

>

> Hope this helps.

>

> Marcie

>

> _____

>

> From: LBDcaregivers [mailto:LBDcaregivers ]

> On Behalf Of Judy

> Sent: Wednesday, July 27, 2011 9:15 AM

> To: LBDcaregivers

> Cc: LBDcaregivers

> Subject: Re: Re: update on Dad

>

> Hi

>

> I have been watching the boards - I remain a silent observer but like to pop

> in of there is something of value that I may add!

> Be able to add!

>

> In this case in regard to home care vs. Nursing home I would just like to

> share with u my experience with mom who has had home care for over 2 yrs

> now- 24/7 ! Mom lives in NYC where I believe most things generally might be

> more expensive - we kept mom at home first because when she could talk and

> think critically - she insisted on staying at home - she is a widow and had

> strong feelings on the confirm of aging in. Little did we know how quickly

> the LBD would steal her life - and this would be an expense we would be

> incurring -

> For us the first expense was in making the apt suitable for home care- the

> bathroom and room for the live in was not too bad -app. 10,000- mom had the

> $ so that was ok

>

> Since then we employ 2 women - one who stays most of

> The time and the other who comes 3 times a week for 4 hrs each dAy to

> relieve - the main caregiver !

>

> Costs- app. 1200 a week just for the help -4800 a month

>

> I am told that this is s bargain (lol) compared to a nursing home in

> dementia unit runs over 10,000 a month -could be up to 15,000 a month

>

> Het other expenses app. 2500 a month - all of this exceeds her overall

> income and it's getting scary that the $ is decreasing at a crazy pace

>

> I hope this gives you a rough idea and some insight into the costa

>

> Best,

>

> Judy

>

> Office email:

> Jrstr@... <mailto:Jrstr%40email.Phoenix.edu>

>

> Sent from my iPhone

>

> On Jul 27, 2011, at 8:04 AM, hanleylin@... <mailto:hanleylin%40aol.com>

> wrote:

>

> > Thank you Marcie and everyone.

> > I know that soon Mom won't be capable and we are looking at 2 parents with

> dementia ! But, Mom is extremely bossy, I have never stood up to her before

> and she does pay all the bills, and run the house - the only area she has

> dementia is in the denial about Dad. My sister is the one that is there

> everyday and she has strong feelings about this and wants to keep them home

> - she says its cheaper to keep them home and hire 24/7 help then go to a

> home - is that true?

> >

> > What would be first steps to take over the situation - would it be a

> meeting with the dr?

> >

> > thanks

> >

> > H

> >

> >

[Guest guest]

I am sending this for the second time. Hopefully it will go through.

Donna

Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

Re: Re: update on Dad

Hi

I have been watching the boards - I remain a silent observer but like to pop in

of there is something of value that I may add!

Be able to add!

In this case in regard to home care vs. Nursing home I would just like to share

with u my experience with mom who has had home care for over 2 yrs now- 24/7 !

Mom lives in NYC where I believe most things generally might be more expensive -

we kept mom at home first because when she could talk and think critically - she

insisted on staying at home - she is a widow and had strong feelings on the

confirm of aging in. Little did we know how quickly the LBD would steal her life

- and this would be an expense we would be incurring -

For us the first expense was in making the apt suitable for home care- the

bathroom and room for the live in was not too bad -app. 10,000- mom had the $ so

that was ok

Since then we employ 2 women - one who stays most of

The time and the other who comes 3 times a week for 4 hrs each dAy to relieve

- the main caregiver !

Costs- app. 1200 a week just for the help -4800 a month

I am told that this is s bargain (lol) compared to a nursing home in dementia

unit runs over 10,000 a month -could be up to 15,000 a month

Het other expenses app. 2500 a month - all of this exceeds her overall income

and it's getting scary that the $ is decreasing at a crazy pace

I hope this gives you a rough idea and some insight into the costa

Best,

Judy

Office email:

Jrstr@...

Sent from my iPhone

> Thank you Marcie and everyone.

> I know that soon Mom won't be capable and we are looking at 2 parents with

dementia ! But, Mom is extremely bossy, I have never stood up to her before and

she does pay all the bills, and run the house - the only area she has dementia

is in the denial about Dad. My sister is the one that is there everyday and she

has strong feelings about this and wants to keep them home - she says its

cheaper to keep them home and hire 24/7 help then go to a home - is that true?

>

> What would be first steps to take over the situation - would it be a meeting

with the dr?

>

> thanks

>

> H

>

>