Re: Venting

June 29, 2006

Hi Donna,

I have had problems with the nursing home wanting to

sedate Jim too, to keep him calm so he won't try to

stand up or be combative with anyone and for staff

convenience. I am there everyday and like a thorne in

their side. I found that Jim was sedated before dinner

one time and I got on that nurse like a bee on honey.

They stated that Jim did not eat dinner that night.

Well, he was drugged. I was so mad I told every nurse

I saw in the hallway what that nurse did and I even

talked to residents about it. That nurse was very

embarrassed for doing such a dumb thing, but it was a

convenient time for her to give Jim the drugs. She is

no longer at the facility. Worse part is she tried to

lie and tell me she didn't give Jim the drugs. Then a

few minutes later she turned around and said, she

tells Jim, " Jan (Me) says for him to take the drugs

now. " So, I said you did give him the drugs at this

time and she said well, yeah, but not to make him

drowsy and I said, " You didn't give him the Seroquel? "

and she said, " Oh yeah, I did give him that. " Now, I

have gone to the head nurse and complained and the

nurse that gave Jim the drugs before dinner is no

longer there. They are really careful now on giving

Jim any drugs that make him drowsy or that he should

not have. They call me before they order anything. I

show up at all hours of the day, so they do not want

me catching them giving Jim anything they shouldn't

and so far everything has been good for about 3 weeks

now. Another thing that was getting me very angry is

that they were strapping Jim to his chair, because he

wants to stand up and they criss cross the belt and

tie it in knots around the back of the chair and it is

very hard to undo. Staff was not changing him, because

they do not want to take the time to undo all the

straps and knots and then tie it up again and when I

would take Jim into the bathroom he was soaking wet

and I was screaming mad and told them that I am going

to administration next if this is not taken care of

and now they have a belt on him that locks and Jim

does not know how to undo it, but it is easy for staff

to remove and Jim is getting changed now.

Another thing I am bothered with is the fact that I

mark all of Jim's clothes very clearly. I use iron on

patches and write Jim's name in big letters with

laundry ink on the iron on patches. I iron them to the

inside of Jim's clothes, you can't miss his name and

yet I find Jim in other people's clothes. I take

masking tape with me to the facility and I write.

" This is NOT Jim's clothes and tape it to the clothes.

But it still happens, so I marked Jim's Shelf and

said, " JIM'S SHELF " But still I find him in other

people's clothes. Today, I wrote. " Can you read

English? I am reporting this to the administration. I

do Jim's Laundry. I want to keep track of his clothes,

so I bring them home and do them. They even put

someone else's clothes in Jim's Laundry Bag. I took

them out and taped the tape on saying, " Not Jim's

Clothes, DO NOT put these in Jim's Laundry Bag. I

have spoken to the head guy of the people that dress

Jim and he said he would talk to these people. I have

spoken to him twice about this. I am going to the

administration tomorrow if I find Jim in someone's

clothes. This is a small problem compared to the

drugs, but I can not understand how they can put

someone else's clothes on Jim when his are clearly

marked and he has enough clothes for the week and for

both hot and cold temperature. There is no reason he

should be dressed in someone else's clothes. I would

not appreciate if I see someone dressed in Jim's

clothes. Now I have vented. Thank You! Jan

--- Donna Mido wrote:

> June,

>

> Please put into your " search "

>

> nsclc.org

>

> then look up " 20 Common Mistakes Made by NH's. "

>

> I had the same problem you had with a hospital and

> the nh. They over medicate and use the wrong stuff

> because that's the way they do it with dementia. I

> had a Psch tell me, " You treat all dementia alike. "

> I told him, no you don't! Then I fought with the nh

> for the next 4 months to get her off what the

> Hospital put her on. I had the same results you

> have. And these MD's said they knew about LBD also.

> They don't! She could have walked in if it hadn't

> been so far and I carried her out and I was in

> tears. She never knew she was in a nh, she thought

> she was still in the hospital.

>

> Donna R

>

> Caregave for Mom (after I brought her from WI to MI)

> for 3 years and 4th year in a nh.

>

> She was almost 89 when she died in '02

>

> No dx other than mine.

>

> Re: MediCal/Medicaid

> >

> > A couple of comments to your good information -

> > Donna,

> > I believe you can include the burial/funeral

> > expenses

> > in part of the spenddown. If we had had enough

> > assets

> > that we would have had to do that, we could have

> > used

> > the funera/burial prepaid plans as part of the

> > spenddown. Also, I'm not sure the house would be

> > exempt no matter where it was if your mother was a

> > single person, as I understand the house would

> have

> > had to be sold or used as part of the spenddown.

> > Jan,

> > I'm curious about the $2378 you write that MediCal

> > is

> > paying you. How does that work? In Kansas, we

> are

> > allowed only $1607 for both our incomes, and

> > anything

> > over that has to be paid by us out of our pocket.

> > You

> > can deduct $50 for personal expenses; rent or

> house

> > payments (which I can't do because my daughter

> paid

> > off my house - a mistake on the advice of the

> > attorney, because I could be using that house

> > payment

> > in our income reduction; the amount of taxes and

> > insurance on the house over $220, which in our

> case

> > is

> > only $80, so it's not that much help. I would

> have

> > been better off to just borrow the money from my

> > daughter and paid her loan payments, and then I

> > wouldn't have to be paying the NH $723 out of my

> > pocket. THis is in addition to what Medicaid is

> > paying, plus now his NH insurance of $100 per day.

>

> > So, I'm curious as to why MediCal is paying you,

> or

> > is

>

=== message truncated ===

__________________________________________________

June 29, 2006

Jan, VENT! You go girl! I would and have done the same thing when my darling

was not cared for properly, and he hollered all night in pain. He had an

infection that

nearly killed him, after four surgeries. I called every personnel in the

hospital, and when I got there, they were all in his room. I fired one doctor

right then and there. Another surgery finally took all the infection out of the

front of his leg, after he had been on several antibotics for weeks. That

pocket of infection had to be cut out, and then the Doctor asked me to take

care of packing the huge 5 " long hole in his leg. I did that several weeks

three

times a day. The infection was gone and I made darn sure it didn't come

back.

Holler, yes I did. We had been through enough, for months, and to hear him

holler was the last straw. My nerves just about snapped.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism.

In a message dated 6/29/2006 3:22:42 AM Central Daylight Time,

janetcolello@... writes:

Hi Donna,

I have had problems with the nursing home wanting to

sedate Jim too, to keep him calm so he won't try to

stand up or be combative with anyone and for staff

convenience. I am there everyday and like a thorne in

their side. I found that Jim was sedated before dinner

one time and I got on that nurse like a bee on honey.

They stated that Jim did not eat dinner that night.

Well, he was drugged. I was so mad I told every nurse

I saw in the hallway what that nurse did and I even

talked to residents about it. That nurse was very

embarrassed for doing such a dumb thing, but it was a

convenient time for her to give Jim the drugs. She is

no longer at the facility. Worse part is she tried to

lie and tell me she didn't give Jim the drugs. Then a

few minutes later she turned around and said, she

tells Jim, " Jan (Me) says for him to take the drugs

now. " So, I said you did give him the drugs at this

time and she said well, yeah, but not to make him

drowsy and I said, " You didn't give him the Seroquel? "

and she said, " Oh yeah, I did give him that. " Now, I

have gone to the head nurse and complained and the

nurse that gave Jim the drugs before dinner is no

longer there. They are really careful now on giving

Jim any drugs that make him drowsy or that he should

not have. They call me before they order anything. I

show up at all hours of the day, so they do not want

me catching them giving Jim anything they shouldn't

and so far everything has been good for about 3 weeks

now. Another thing that was getting me very angry is

that they were strapping Jim to his chair, because he

wants to stand up and they criss cross the belt and

tie it in knots around the back of the chair and it is

very hard to undo. Staff was not changing him, because

they do not want to take the time to undo all the

straps and knots and then tie it up again and when I

would take Jim into the bathroom he was soaking wet

and I was screaming mad and told them that I am going

to administration next if this is not taken care of

and now they have a belt on him that locks and Jim

does not know how to undo it, but it is easy for staff

to remove and Jim is getting changed now.

Another thing I am bothered with is the fact that I

mark all of Jim's clothes very clearly. I use iron on

patches and write Jim's name in big letters with

laundry ink on the iron on patches. I iron them to the

inside of Jim's clothes, you can't miss his name and

yet I find Jim in other people's clothes. I take

masking tape with me to the facility and I write.

" This is NOT Jim's clothes and tape it to the clothes.

But it still happens, so I marked Jim's Shelf and

said, " JIM'S SHELF " But still I find him in other

people's clothes. Today, I wrote. " Can you read

English? I am reporting this to the administration. I

do Jim's Laundry. I want to keep track of his clothes,

so I bring them home and do them. They even put

someone else's clothes in Jim's Laundry Bag. I took

them out and taped the tape on saying, " Not Jim's

Clothes, DO NOT put these in Jim's Laundry Bag. I

have spoken to the head guy of the people that dress

Jim and he said he would talk to these people. I have

spoken to him twice about this. I am going to the

administration tomorrow if I find Jim in someone's

clothes. This is a small problem compared to the

drugs, but I can not understand how they can put

someone else's clothes on Jim when his are clearly

marked and he has enough clothes for the week and for

both hot and cold temperature. There is no reason he

should be dressed in someone else's clothes. I would

not appreciate if I see someone dressed in Jim's

clothes. Now I have vented. Thank You! Jan

--- Donna Mido wrote:

> June,

>

> Please put into your " search "

>

> nsclc.org

>

> then look up " 20 Common Mistakes Made by NH's. "

>

> I had the same problem you had with a hospital and

> the nh. They over medicate and use the wrong stuff

> because that's the way they do it with dementia. I

> had a Psch tell me, " You treat all dementia alike. "

> I told him, no you don't! Then I fought with the nh

> for the next 4 months to get her off what the

> Hospital put her on. I had the same results you

> have. And these MD's said they knew about LBD also.

> They don't! She could have walked in if it hadn't

> been so far and I carried her out and I was in

> tears. She never knew she was in a nh, she thought

> she was still in the hospital.

>

> Donna R

>

> Caregave for Mom (after I brought her from WI to MI)

> for 3 years and 4th year in a nh.

>

> She was almost 89 when she died in '02

>

> No dx other than mine.

>

> -----Original Message-----

> From: June Christensen

> Sent: Thursday, June 29, 2006 12:25 AM

> To: LBDcaregivers

> Subject: Re: MediCal/Medicaid

>

> I tell you what, I am so fed up with the medical

> profession, I could choke. I think you should still

> demand an accounting from the NH and Medicaid for

> what

> was paid and by whom. If MCaid paid for the whold

> month she died, the NH should have refunded that

> portion to them, and certainly your 20 days should

> have been refunded. Probably one of the reasons

> they

> didn't come after you for part of her estate after

> she

> died was that if they think the estate is not

> extensive, it isn't worth their time to do it. I

> have

> been told that.

>

> My husband was returned from sr. diagnostics at the

> hospital today, a far cry from what he went in last

> Wednesday. He was alert, eating, and talking, tho

> making no sense. He had been combative at the NH,

> and

> they tried seroquel, which didn't do anything, but

> he

> had a UTI (the hospital diagnosed this), and the NH

> insisted he go in for medicine evaluation. The

> hospital put him on clonaphine; tried trazadone for

> sleep, but it didn't work; Depakote to even out the

> moods; and because he appeared to be in pain, they

> placed a fentanyl patch on him for pain. He is now

> in

> a semi-coma, zombie state, took 4 aids/nurses to

> move

> him tonight, won't open eyes, can't talk, is still

> combative and antagonized easily but doesnt have

> enough strength to hurt anyone. I was impressed at

> first with the psychiatrist, and he agreed that he

> thought it was Lewy Body, so why did he put him on

> clonaphine and the fentanyl patch, part of the

> morphine drugs? Now he is a complete mess. I am

> beside myself as to what to do about this. Does

> anyone have any suggestions? I'm about ready to

> call

> off all the drugs except Celexa, Flomax, Tylenol,

> and

> the antibiotic for the UTI. Of course, the HN

> doesn't

> want this, because they would have to take care of

> him!

>

> --- Donna Mido wrote:

>

> > June,

> >

> > I think that is why it is so important to see what

> > the legal issues are in the state you live in, as

> > they are all different. I was told she could have

> a

> > house and car that would be exempt here in MI. I

> > imagine that is where they would have gone to

> > " recover " if there was a recovery law here. I

> found

> > a lawyer that cost me $5000. who worked both in MI

> > and WI and he got me out of most any trouble I was

> > in and said whoever I was working with didn't know

> > what he was doing. (For Medicaid.)

> >

> > Yes, you are right about the spend down, and the

> > Medicaid wanted to know when I took out the burial

> > expenses. It had been done long before we looked

> at

> > Medicaid.

> >

> > And it broke me, and her and she only spent the

> last

> > year in a nh. I was left with nothing. They took

> > most of the rent off her house and her SS check

> > which was close to $1500 for the two. I never did

> > find out what the cost of the nh was. The nh just

> > sent me my part of the bill and I never knew what

> > Medicaid paid. I guess I would have found that

> out

> > when she died if I had owed anything. I had just

> > paid the $1500. in Oct when she died and she had

> > only been in the nh for 10 days that month. I

> never

> > did see a bill or get a refund.

> >

> > So, do ask questions. I saw several lawyers while

> I

> > had Mom with me for 3 years and most of them

> didn't

> > tell me anything. I didn't ask the right

> questions.

> > And I had the complication of two states. I

> assumed

> > she was still a resident of WI, as that is where

> her

> > home was. Because she was here with me for 3

> years,

> > she was now a resident of MI.

> >

> > Donna R

> >

> > Caregave for Mom (after I brought her from WI to

> MI)

> > for 3 years and 4th year in a nh.

> >

> > She was almost 89 when she died in '02

> >

> > No dx other than mine.

> >

> > Re: MediCal/Medicaid

> >

> > A couple of comments to your good information -

> > Donna,

> > I believe you can include the burial/funeral

> > expenses

> > in part of the spenddown. If we had had enough

> > assets

> > that we would have had to do that, we could have

> > used

> > the funera/burial prepaid plans as part of the

> > spenddown. Also, I'm not sure the house would be

> > exempt no matter where it was if your mother was a

> > single person, as I understand the house would

> have

> > had to be sold or used as part of the spenddown.

> > Jan,

> > I'm curious about the $2378 you write that MediCal

> > is

> > paying you. How does that work? In Kansas, we

> are

> > allowed only $1607 for both our incomes, and

> > anything

> > over that has to be paid by us out of our pocket.

> > You

> > can deduct $50 for personal expenses; rent or

> house

> > payments (which I can't do because my daughter

> paid

> > off my house - a mistake on the advice of the

> > attorney, because I could be using that house

> > payment

> > in our income reduction; the amount of taxes and

> > insurance on the house over $220, which in our

> case

> > is

> > only $80, so it's not that much help. I would

> have

> > been better off to just borrow the money from my

> > daughter and paid her loan payments, and then I

> > wouldn't have to be paying the NH $723 out of my

> > pocket. THis is in addition to what Medicaid is

> > paying, plus now his NH insurance of $100 per day.

>

> > So, I'm curious as to why MediCal is paying you,

> or

> > is

>

=== message truncated ===

__________________________________________________

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June 29, 2006

Jan, VENT! You go girl! I would and have done the same thing when my darling

was not cared for properly, and he hollered all night in pain. He had an

infection that

nearly killed him, after four surgeries. I called every personnel in the

hospital, and when I got there, they were all in his room. I fired one doctor

right then and there. Another surgery finally took all the infection out of the

front of his leg, after he had been on several antibotics for weeks. That

pocket of infection had to be cut out, and then the Doctor asked me to take

care of packing the huge 5 " long hole in his leg. I did that several weeks

three

times a day. The infection was gone and I made darn sure it didn't come

back.

Holler, yes I did. We had been through enough, for months, and to hear him

holler was the last straw. My nerves just about snapped.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism.

In a message dated 6/29/2006 3:22:42 AM Central Daylight Time,

janetcolello@... writes:

Hi Donna,

I have had problems with the nursing home wanting to

sedate Jim too, to keep him calm so he won't try to

stand up or be combative with anyone and for staff

convenience. I am there everyday and like a thorne in

their side. I found that Jim was sedated before dinner

one time and I got on that nurse like a bee on honey.

They stated that Jim did not eat dinner that night.

Well, he was drugged. I was so mad I told every nurse

I saw in the hallway what that nurse did and I even

talked to residents about it. That nurse was very

embarrassed for doing such a dumb thing, but it was a

convenient time for her to give Jim the drugs. She is

no longer at the facility. Worse part is she tried to

lie and tell me she didn't give Jim the drugs. Then a

few minutes later she turned around and said, she

tells Jim, " Jan (Me) says for him to take the drugs

now. " So, I said you did give him the drugs at this

time and she said well, yeah, but not to make him

drowsy and I said, " You didn't give him the Seroquel? "

and she said, " Oh yeah, I did give him that. " Now, I

have gone to the head nurse and complained and the

nurse that gave Jim the drugs before dinner is no

longer there. They are really careful now on giving

Jim any drugs that make him drowsy or that he should

not have. They call me before they order anything. I

show up at all hours of the day, so they do not want

me catching them giving Jim anything they shouldn't

and so far everything has been good for about 3 weeks

now. Another thing that was getting me very angry is

that they were strapping Jim to his chair, because he

wants to stand up and they criss cross the belt and

tie it in knots around the back of the chair and it is

very hard to undo. Staff was not changing him, because

they do not want to take the time to undo all the

straps and knots and then tie it up again and when I

would take Jim into the bathroom he was soaking wet

and I was screaming mad and told them that I am going

to administration next if this is not taken care of

and now they have a belt on him that locks and Jim

does not know how to undo it, but it is easy for staff

to remove and Jim is getting changed now.

Another thing I am bothered with is the fact that I

mark all of Jim's clothes very clearly. I use iron on

patches and write Jim's name in big letters with

laundry ink on the iron on patches. I iron them to the

inside of Jim's clothes, you can't miss his name and

yet I find Jim in other people's clothes. I take

masking tape with me to the facility and I write.

" This is NOT Jim's clothes and tape it to the clothes.

But it still happens, so I marked Jim's Shelf and

said, " JIM'S SHELF " But still I find him in other

people's clothes. Today, I wrote. " Can you read

English? I am reporting this to the administration. I

do Jim's Laundry. I want to keep track of his clothes,

so I bring them home and do them. They even put

someone else's clothes in Jim's Laundry Bag. I took

them out and taped the tape on saying, " Not Jim's

Clothes, DO NOT put these in Jim's Laundry Bag. I

have spoken to the head guy of the people that dress

Jim and he said he would talk to these people. I have

spoken to him twice about this. I am going to the

administration tomorrow if I find Jim in someone's

clothes. This is a small problem compared to the

drugs, but I can not understand how they can put

someone else's clothes on Jim when his are clearly

marked and he has enough clothes for the week and for

both hot and cold temperature. There is no reason he

should be dressed in someone else's clothes. I would

not appreciate if I see someone dressed in Jim's

clothes. Now I have vented. Thank You! Jan

--- Donna Mido wrote:

> June,

>

> Please put into your " search "

>

> nsclc.org

>

> then look up " 20 Common Mistakes Made by NH's. "

>

> I had the same problem you had with a hospital and

> the nh. They over medicate and use the wrong stuff

> because that's the way they do it with dementia. I

> had a Psch tell me, " You treat all dementia alike. "

> I told him, no you don't! Then I fought with the nh

> for the next 4 months to get her off what the

> Hospital put her on. I had the same results you

> have. And these MD's said they knew about LBD also.

> They don't! She could have walked in if it hadn't

> been so far and I carried her out and I was in

> tears. She never knew she was in a nh, she thought

> she was still in the hospital.

>

> Donna R

>

> Caregave for Mom (after I brought her from WI to MI)

> for 3 years and 4th year in a nh.

>

> She was almost 89 when she died in '02

>

> No dx other than mine.

>

> -----Original Message-----

> From: June Christensen

> Sent: Thursday, June 29, 2006 12:25 AM

> To: LBDcaregivers

> Subject: Re: MediCal/Medicaid

>

> I tell you what, I am so fed up with the medical

> profession, I could choke. I think you should still

> demand an accounting from the NH and Medicaid for

> what

> was paid and by whom. If MCaid paid for the whold

> month she died, the NH should have refunded that

> portion to them, and certainly your 20 days should

> have been refunded. Probably one of the reasons

> they

> didn't come after you for part of her estate after

> she

> died was that if they think the estate is not

> extensive, it isn't worth their time to do it. I

> have

> been told that.

>

> My husband was returned from sr. diagnostics at the

> hospital today, a far cry from what he went in last

> Wednesday. He was alert, eating, and talking, tho

> making no sense. He had been combative at the NH,

> and

> they tried seroquel, which didn't do anything, but

> he

> had a UTI (the hospital diagnosed this), and the NH

> insisted he go in for medicine evaluation. The

> hospital put him on clonaphine; tried trazadone for

> sleep, but it didn't work; Depakote to even out the

> moods; and because he appeared to be in pain, they

> placed a fentanyl patch on him for pain. He is now

> in

> a semi-coma, zombie state, took 4 aids/nurses to

> move

> him tonight, won't open eyes, can't talk, is still

> combative and antagonized easily but doesnt have

> enough strength to hurt anyone. I was impressed at

> first with the psychiatrist, and he agreed that he

> thought it was Lewy Body, so why did he put him on

> clonaphine and the fentanyl patch, part of the

> morphine drugs? Now he is a complete mess. I am

> beside myself as to what to do about this. Does

> anyone have any suggestions? I'm about ready to

> call

> off all the drugs except Celexa, Flomax, Tylenol,

> and

> the antibiotic for the UTI. Of course, the HN

> doesn't

> want this, because they would have to take care of

> him!

>

> --- Donna Mido wrote:

>

> > June,

> >

> > I think that is why it is so important to see what

> > the legal issues are in the state you live in, as

> > they are all different. I was told she could have

> a

> > house and car that would be exempt here in MI. I

> > imagine that is where they would have gone to

> > " recover " if there was a recovery law here. I

> found

> > a lawyer that cost me $5000. who worked both in MI

> > and WI and he got me out of most any trouble I was

> > in and said whoever I was working with didn't know

> > what he was doing. (For Medicaid.)

> >

> > Yes, you are right about the spend down, and the

> > Medicaid wanted to know when I took out the burial

> > expenses. It had been done long before we looked

> at

> > Medicaid.

> >

> > And it broke me, and her and she only spent the

> last

> > year in a nh. I was left with nothing. They took

> > most of the rent off her house and her SS check

> > which was close to $1500 for the two. I never did

> > find out what the cost of the nh was. The nh just

> > sent me my part of the bill and I never knew what

> > Medicaid paid. I guess I would have found that

> out

> > when she died if I had owed anything. I had just

> > paid the $1500. in Oct when she died and she had

> > only been in the nh for 10 days that month. I

> never

> > did see a bill or get a refund.

> >

> > So, do ask questions. I saw several lawyers while

> I

> > had Mom with me for 3 years and most of them

> didn't

> > tell me anything. I didn't ask the right

> questions.

> > And I had the complication of two states. I

> assumed

> > she was still a resident of WI, as that is where

> her

> > home was. Because she was here with me for 3

> years,

> > she was now a resident of MI.

> >

> > Donna R

> >

> > Caregave for Mom (after I brought her from WI to

> MI)

> > for 3 years and 4th year in a nh.

> >

> > She was almost 89 when she died in '02

> >

> > No dx other than mine.

> >

> > Re: MediCal/Medicaid

> >

> > A couple of comments to your good information -

> > Donna,

> > I believe you can include the burial/funeral

> > expenses

> > in part of the spenddown. If we had had enough

> > assets

> > that we would have had to do that, we could have

> > used

> > the funera/burial prepaid plans as part of the

> > spenddown. Also, I'm not sure the house would be

> > exempt no matter where it was if your mother was a

> > single person, as I understand the house would

> have

> > had to be sold or used as part of the spenddown.

> > Jan,

> > I'm curious about the $2378 you write that MediCal

> > is

> > paying you. How does that work? In Kansas, we

> are

> > allowed only $1607 for both our incomes, and

> > anything

> > over that has to be paid by us out of our pocket.

> > You

> > can deduct $50 for personal expenses; rent or

> house

> > payments (which I can't do because my daughter

> paid

> > off my house - a mistake on the advice of the

> > attorney, because I could be using that house

> > payment

> > in our income reduction; the amount of taxes and

> > insurance on the house over $220, which in our

> case

> > is

> > only $80, so it's not that much help. I would

> have

> > been better off to just borrow the money from my

> > daughter and paid her loan payments, and then I

> > wouldn't have to be paying the NH $723 out of my

> > pocket. THis is in addition to what Medicaid is

> > paying, plus now his NH insurance of $100 per day.

>

> > So, I'm curious as to why MediCal is paying you,

> or

> > is

>

=== message truncated ===

__________________________________________________

Do You Yahoo!?

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June 29, 2006

Jan, same song, second verse, for my experience with

the NH. I don't know if you have read my posts about

Darrell being taken to Sr. Diagnostics at the local

hospital, where they added Depacote and a fentanyl

patch for pain (even tho they don't know what is

causing the pain). They also gave him clonapine for a

few days, which is on the list of drugs not to give.

Last night I looked up both fentanyl and Depakote on

the Internet, and both should be no-no's for LBD,

which the psychiatrist agreed that he has. Fentanyl

is in the morphine category, and Depakote can cause

liver damage. He is a sitting zombie now, cannot talk

except gutteral, unintelligible, is still combative,

tho too weak to do anything, won't open his eyes, and

on and on. I can't understand why the psychiatrist

put him on these drugs after we had a long talk and I

warned him of the drugs for LBD, and he agreed that he

had LBD, so why do they do that? I am at my wit's end

with the medical profession, but I don't know what to

do about his case. They just tell me he is entering

another phase of the disease, but I think he was

thrown into it by the addition of those drugs. If I

mention taking him off, they say they won't have any

way to control him, and he can't be allowed to hurt

himself or the staff. The staff last night was

appalled at his condition upon return from the

hospital. I haven't been there during the day staff,

but I think I will go today and see their attitude.

Some of the day shift have been very antagonistic

toward me. I have had meetings with the social worker

and the administrator, and they say they will do

things, but it doesn't happen. I think they want him

out of there, which they tried to do when he was in

the hospital, until the social worker at the hospital

told them they couldn't unless they found a place for

him.

I will read your MediCaid letter more when I have

time, but I am not sure they give you that money, they

allow you that much money as total income, and if you

go over what is allowed, then you pay out of pocket,

which is what I am doing. The difference between the

$2378 they allow and the $1607 which I am allowed to

keep is a little over $700, which is what I pay out of

pocket. I cannot live on the $1607, so I will be

taking out of savings, home equity, etc. to get along.

--- Janet Colello wrote:

> Hi Donna,

> I have had problems with the nursing home wanting to

> sedate Jim too, to keep him calm so he won't try to

> stand up or be combative with anyone and for staff

> convenience. I am there everyday and like a thorne

> in

> their side. I found that Jim was sedated before

> dinner

> one time and I got on that nurse like a bee on

> honey.

> They stated that Jim did not eat dinner that night.

> Well, he was drugged. I was so mad I told every

> nurse

> I saw in the hallway what that nurse did and I even

> talked to residents about it. That nurse was very

> embarrassed for doing such a dumb thing, but it was

> a

> convenient time for her to give Jim the drugs. She

> is

> no longer at the facility. Worse part is she tried

> to

> lie and tell me she didn't give Jim the drugs. Then

> a

> few minutes later she turned around and said, she

> tells Jim, " Jan (Me) says for him to take the drugs

> now. " So, I said you did give him the drugs at this

> time and she said well, yeah, but not to make him

> drowsy and I said, " You didn't give him the

> Seroquel? "

> and she said, " Oh yeah, I did give him that. " Now, I

> have gone to the head nurse and complained and the

> nurse that gave Jim the drugs before dinner is no

> longer there. They are really careful now on giving

> Jim any drugs that make him drowsy or that he should

> not have. They call me before they order anything. I

> show up at all hours of the day, so they do not want

> me catching them giving Jim anything they shouldn't

> and so far everything has been good for about 3

> weeks

> now. Another thing that was getting me very angry is

> that they were strapping Jim to his chair, because

> he

> wants to stand up and they criss cross the belt and

> tie it in knots around the back of the chair and it

> is

> very hard to undo. Staff was not changing him,

> because

> they do not want to take the time to undo all the

> straps and knots and then tie it up again and when I

> would take Jim into the bathroom he was soaking wet

> and I was screaming mad and told them that I am

> going

> to administration next if this is not taken care of

> and now they have a belt on him that locks and Jim

> does not know how to undo it, but it is easy for

> staff

> to remove and Jim is getting changed now.

> Another thing I am bothered with is the fact that I

> mark all of Jim's clothes very clearly. I use iron

> on

> patches and write Jim's name in big letters with

> laundry ink on the iron on patches. I iron them to

> the

> inside of Jim's clothes, you can't miss his name and

> yet I find Jim in other people's clothes. I take

> masking tape with me to the facility and I write.

> " This is NOT Jim's clothes and tape it to the

> clothes.

> But it still happens, so I marked Jim's Shelf and

> said, " JIM'S SHELF " But still I find him in other

> people's clothes. Today, I wrote. " Can you read

> English? I am reporting this to the administration.

> I

> do Jim's Laundry. I want to keep track of his

> clothes,

> so I bring them home and do them. They even put

> someone else's clothes in Jim's Laundry Bag. I took

> them out and taped the tape on saying, " Not Jim's

> Clothes, DO NOT put these in Jim's Laundry Bag. I

> have spoken to the head guy of the people that dress

> Jim and he said he would talk to these people. I

> have

> spoken to him twice about this. I am going to the

> administration tomorrow if I find Jim in someone's

> clothes. This is a small problem compared to the

> drugs, but I can not understand how they can put

> someone else's clothes on Jim when his are clearly

> marked and he has enough clothes for the week and

> for

> both hot and cold temperature. There is no reason he

> should be dressed in someone else's clothes. I would

> not appreciate if I see someone dressed in Jim's

> clothes. Now I have vented. Thank You! Jan

>

> --- Donna Mido wrote:

>

> > June,

> >

> > Please put into your " search "

> >

> > nsclc.org

> >

> > then look up " 20 Common Mistakes Made by NH's. "

> >

> > I had the same problem you had with a hospital and

> > the nh. They over medicate and use the wrong

> stuff

> > because that's the way they do it with dementia.

> I

> > had a Psch tell me, " You treat all dementia

> alike. "

> > I told him, no you don't! Then I fought with the

> nh

> > for the next 4 months to get her off what the

> > Hospital put her on. I had the same results you

> > have. And these MD's said they knew about LBD

> also.

> > They don't! She could have walked in if it

> hadn't

> > been so far and I carried her out and I was in

> > tears. She never knew she was in a nh, she

> thought

> > she was still in the hospital.

> >

> > Donna R

> >

> > Caregave for Mom (after I brought her from WI to

> MI)

> > for 3 years and 4th year in a nh.

> >

> > She was almost 89 when she died in '02

> >

> > No dx other than mine.

> >

> > Re: MediCal/Medicaid

> >

> > I tell you what, I am so fed up with the medical

> > profession, I could choke. I think you should

> still

> > demand an accounting from the NH and Medicaid for

> > what

> > was paid and by whom. If MCaid paid for the whold

> > month she died, the NH should have refunded that

> > portion to them, and certainly your 20 days should

> > have been refunded. Probably one of the reasons

> > they

> > didn't come after you for part of her estate after

> > she

> > died was that if they think the estate is not

> > extensive, it isn't worth their time to do it. I

> > have

> > been told that.

> >

> > My husband was returned from sr. diagnostics at

> the

> > hospital today, a far cry from what he went in

> last

> > Wednesday. He was alert, eating, and talking, tho

> > making no sense. He had been combative at the NH,

> > and

> > they tried seroquel, which didn't do anything, but

> > he

> > had a UTI (the hospital diagnosed this), and the

> NH

> > insisted he go in for medicine evaluation. The

> > hospital put him on clonaphine; tried trazadone

> for

> > sleep, but it didn't work; Depakote to even out

> the

> > moods; and because he appeared to be in pain, they

> > placed a fentanyl patch on him for pain. He is

> now

> > in

> > a semi-coma, zombie state, took 4 aids/nurses to

> > move

> > him tonight, won't open eyes, can't talk, is still

> > combative and antagonized easily but doesnt have

> > enough strength to hurt anyone. I was impressed

> at

> > first with the psychiatrist, and he agreed that he

> > thought it was Lewy Body, so why did he put him on

> > clonaphine and the fentanyl patch, part of the

> > morphine drugs? Now he is a complete mess. I am

> > beside myself as to what to do about this. Does

> > anyone have any suggestions? I'm about ready to

> > call

> > off all the drugs except Celexa, Flomax, Tylenol,

> > and

> > the antibiotic for the UTI. Of course, the HN

> > doesn't

> > want this, because they would have to take care of

> > him!

> >

>

=== message truncated ===

__________________________________________________

June 29, 2006

Jan, same song, second verse, for my experience with

the NH. I don't know if you have read my posts about

Darrell being taken to Sr. Diagnostics at the local

hospital, where they added Depacote and a fentanyl

patch for pain (even tho they don't know what is

causing the pain). They also gave him clonapine for a

few days, which is on the list of drugs not to give.

Last night I looked up both fentanyl and Depakote on

the Internet, and both should be no-no's for LBD,

which the psychiatrist agreed that he has. Fentanyl

is in the morphine category, and Depakote can cause

liver damage. He is a sitting zombie now, cannot talk

except gutteral, unintelligible, is still combative,

tho too weak to do anything, won't open his eyes, and

on and on. I can't understand why the psychiatrist

put him on these drugs after we had a long talk and I

warned him of the drugs for LBD, and he agreed that he

had LBD, so why do they do that? I am at my wit's end

with the medical profession, but I don't know what to

do about his case. They just tell me he is entering

another phase of the disease, but I think he was

thrown into it by the addition of those drugs. If I

mention taking him off, they say they won't have any

way to control him, and he can't be allowed to hurt

himself or the staff. The staff last night was

appalled at his condition upon return from the

hospital. I haven't been there during the day staff,

but I think I will go today and see their attitude.

Some of the day shift have been very antagonistic

toward me. I have had meetings with the social worker

and the administrator, and they say they will do

things, but it doesn't happen. I think they want him

out of there, which they tried to do when he was in

the hospital, until the social worker at the hospital

told them they couldn't unless they found a place for

him.

I will read your MediCaid letter more when I have

time, but I am not sure they give you that money, they

allow you that much money as total income, and if you

go over what is allowed, then you pay out of pocket,

which is what I am doing. The difference between the

$2378 they allow and the $1607 which I am allowed to

keep is a little over $700, which is what I pay out of

pocket. I cannot live on the $1607, so I will be

taking out of savings, home equity, etc. to get along.

--- Janet Colello wrote:

> Hi Donna,

> I have had problems with the nursing home wanting to

> sedate Jim too, to keep him calm so he won't try to

> stand up or be combative with anyone and for staff

> convenience. I am there everyday and like a thorne

> in

> their side. I found that Jim was sedated before

> dinner

> one time and I got on that nurse like a bee on

> honey.

> They stated that Jim did not eat dinner that night.

> Well, he was drugged. I was so mad I told every

> nurse

> I saw in the hallway what that nurse did and I even

> talked to residents about it. That nurse was very

> embarrassed for doing such a dumb thing, but it was

> a

> convenient time for her to give Jim the drugs. She

> is

> no longer at the facility. Worse part is she tried

> to

> lie and tell me she didn't give Jim the drugs. Then

> a

> few minutes later she turned around and said, she

> tells Jim, " Jan (Me) says for him to take the drugs

> now. " So, I said you did give him the drugs at this

> time and she said well, yeah, but not to make him

> drowsy and I said, " You didn't give him the

> Seroquel? "

> and she said, " Oh yeah, I did give him that. " Now, I

> have gone to the head nurse and complained and the

> nurse that gave Jim the drugs before dinner is no

> longer there. They are really careful now on giving

> Jim any drugs that make him drowsy or that he should

> not have. They call me before they order anything. I

> show up at all hours of the day, so they do not want

> me catching them giving Jim anything they shouldn't

> and so far everything has been good for about 3

> weeks

> now. Another thing that was getting me very angry is

> that they were strapping Jim to his chair, because

> he

> wants to stand up and they criss cross the belt and

> tie it in knots around the back of the chair and it

> is

> very hard to undo. Staff was not changing him,

> because

> they do not want to take the time to undo all the

> straps and knots and then tie it up again and when I

> would take Jim into the bathroom he was soaking wet

> and I was screaming mad and told them that I am

> going

> to administration next if this is not taken care of

> and now they have a belt on him that locks and Jim

> does not know how to undo it, but it is easy for

> staff

> to remove and Jim is getting changed now.

> Another thing I am bothered with is the fact that I

> mark all of Jim's clothes very clearly. I use iron

> on

> patches and write Jim's name in big letters with

> laundry ink on the iron on patches. I iron them to

> the

> inside of Jim's clothes, you can't miss his name and

> yet I find Jim in other people's clothes. I take

> masking tape with me to the facility and I write.

> " This is NOT Jim's clothes and tape it to the

> clothes.

> But it still happens, so I marked Jim's Shelf and

> said, " JIM'S SHELF " But still I find him in other

> people's clothes. Today, I wrote. " Can you read

> English? I am reporting this to the administration.

> I

> do Jim's Laundry. I want to keep track of his

> clothes,

> so I bring them home and do them. They even put

> someone else's clothes in Jim's Laundry Bag. I took

> them out and taped the tape on saying, " Not Jim's

> Clothes, DO NOT put these in Jim's Laundry Bag. I

> have spoken to the head guy of the people that dress

> Jim and he said he would talk to these people. I

> have

> spoken to him twice about this. I am going to the

> administration tomorrow if I find Jim in someone's

> clothes. This is a small problem compared to the

> drugs, but I can not understand how they can put

> someone else's clothes on Jim when his are clearly

> marked and he has enough clothes for the week and

> for

> both hot and cold temperature. There is no reason he

> should be dressed in someone else's clothes. I would

> not appreciate if I see someone dressed in Jim's

> clothes. Now I have vented. Thank You! Jan

>

> --- Donna Mido wrote:

>

> > June,

> >

> > Please put into your " search "

> >

> > nsclc.org

> >

> > then look up " 20 Common Mistakes Made by NH's. "

> >

> > I had the same problem you had with a hospital and

> > the nh. They over medicate and use the wrong

> stuff

> > because that's the way they do it with dementia.

> I

> > had a Psch tell me, " You treat all dementia

> alike. "

> > I told him, no you don't! Then I fought with the

> nh

> > for the next 4 months to get her off what the

> > Hospital put her on. I had the same results you

> > have. And these MD's said they knew about LBD

> also.

> > They don't! She could have walked in if it

> hadn't

> > been so far and I carried her out and I was in

> > tears. She never knew she was in a nh, she

> thought

> > she was still in the hospital.

> >

> > Donna R

> >

> > Caregave for Mom (after I brought her from WI to

> MI)

> > for 3 years and 4th year in a nh.

> >

> > She was almost 89 when she died in '02

> >

> > No dx other than mine.

> >

> > Re: MediCal/Medicaid

> >

> > I tell you what, I am so fed up with the medical

> > profession, I could choke. I think you should

> still

> > demand an accounting from the NH and Medicaid for

> > what

> > was paid and by whom. If MCaid paid for the whold

> > month she died, the NH should have refunded that

> > portion to them, and certainly your 20 days should

> > have been refunded. Probably one of the reasons

> > they

> > didn't come after you for part of her estate after

> > she

> > died was that if they think the estate is not

> > extensive, it isn't worth their time to do it. I

> > have

> > been told that.

> >

> > My husband was returned from sr. diagnostics at

> the

> > hospital today, a far cry from what he went in

> last

> > Wednesday. He was alert, eating, and talking, tho

> > making no sense. He had been combative at the NH,

> > and

> > they tried seroquel, which didn't do anything, but

> > he

> > had a UTI (the hospital diagnosed this), and the

> NH

> > insisted he go in for medicine evaluation. The

> > hospital put him on clonaphine; tried trazadone

> for

> > sleep, but it didn't work; Depakote to even out

> the

> > moods; and because he appeared to be in pain, they

> > placed a fentanyl patch on him for pain. He is

> now

> > in

> > a semi-coma, zombie state, took 4 aids/nurses to

> > move

> > him tonight, won't open eyes, can't talk, is still

> > combative and antagonized easily but doesnt have

> > enough strength to hurt anyone. I was impressed

> at

> > first with the psychiatrist, and he agreed that he

> > thought it was Lewy Body, so why did he put him on

> > clonaphine and the fentanyl patch, part of the

> > morphine drugs? Now he is a complete mess. I am

> > beside myself as to what to do about this. Does

> > anyone have any suggestions? I'm about ready to

> > call

> > off all the drugs except Celexa, Flomax, Tylenol,

> > and

> > the antibiotic for the UTI. Of course, the HN

> > doesn't

> > want this, because they would have to take care of

> > him!

> >

>

=== message truncated ===

__________________________________________________

June 29, 2006

I couldn't find the drug " Clonapine " but if it's " Clonapam " it's ATIVAN. Which

is a NOT DRUG for people with LBD. The psychiatrist started my husband on

Depakote a month ago, 500 mg. once a day, and for him it has really helped. We

all know that this is a tricky disease as far as drugs go. What works for one

person doesn't work for another.

Eleanor

Re: MediCal/Medicaid

> >

> > I tell you what, I am so fed up with the medical

> > profession, I could choke. I think you should

> still

> > demand an accounting from the NH and Medicaid for

> > what

> > was paid and by whom. If MCaid paid for the whold

> > month she died, the NH should have refunded that

> > portion to them, and certainly your 20 days should

> > have been refunded. Probably one of the reasons

> > they

> > didn't come after you for part of her estate after

> > she

> > died was that if they think the estate is not

> > extensive, it isn't worth their time to do it. I

> > have

> > been told that.

> >

> > My husband was returned from sr. diagnostics at

> the

> > hospital today, a far cry from what he went in

> last

> > Wednesday. He was alert, eating, and talking, tho

> > making no sense. He had been combative at the NH,

> > and

> > they tried seroquel, which didn't do anything, but

> > he

> > had a UTI (the hospital diagnosed this), and the

> NH

> > insisted he go in for medicine evaluation. The

> > hospital put him on clonaphine; tried trazadone

> for

> > sleep, but it didn't work; Depakote to even out

> the

> > moods; and because he appeared to be in pain, they

> > placed a fentanyl patch on him for pain. He is

> now

> > in

> > a semi-coma, zombie state, took 4 aids/nurses to

> > move

> > him tonight, won't open eyes, can't talk, is still

> > combative and antagonized easily but doesnt have

> > enough strength to hurt anyone. I was impressed

> at

> > first with the psychiatrist, and he agreed that he

> > thought it was Lewy Body, so why did he put him on

> > clonaphine and the fentanyl patch, part of the

> > morphine drugs? Now he is a complete mess. I am

> > beside myself as to what to do about this. Does

> > anyone have any suggestions? I'm about ready to

> > call

> > off all the drugs except Celexa, Flomax, Tylenol,

> > and

> > the antibiotic for the UTI. Of course, the HN

> > doesn't

> > want this, because they would have to take care of

> > him!

> >

>

=== message truncated ===

__________________________________________________

June 29, 2006

I couldn't find the drug " Clonapine " but if it's " Clonapam " it's ATIVAN. Which

is a NOT DRUG for people with LBD. The psychiatrist started my husband on

Depakote a month ago, 500 mg. once a day, and for him it has really helped. We

all know that this is a tricky disease as far as drugs go. What works for one

person doesn't work for another.

Eleanor

Re: MediCal/Medicaid

> >

> > I tell you what, I am so fed up with the medical

> > profession, I could choke. I think you should

> still

> > demand an accounting from the NH and Medicaid for

> > what

> > was paid and by whom. If MCaid paid for the whold

> > month she died, the NH should have refunded that

> > portion to them, and certainly your 20 days should

> > have been refunded. Probably one of the reasons

> > they

> > didn't come after you for part of her estate after

> > she

> > died was that if they think the estate is not

> > extensive, it isn't worth their time to do it. I

> > have

> > been told that.

> >

> > My husband was returned from sr. diagnostics at

> the

> > hospital today, a far cry from what he went in

> last

> > Wednesday. He was alert, eating, and talking, tho

> > making no sense. He had been combative at the NH,

> > and

> > they tried seroquel, which didn't do anything, but

> > he

> > had a UTI (the hospital diagnosed this), and the

> NH

> > insisted he go in for medicine evaluation. The

> > hospital put him on clonaphine; tried trazadone

> for

> > sleep, but it didn't work; Depakote to even out

> the

> > moods; and because he appeared to be in pain, they

> > placed a fentanyl patch on him for pain. He is

> now

> > in

> > a semi-coma, zombie state, took 4 aids/nurses to

> > move

> > him tonight, won't open eyes, can't talk, is still

> > combative and antagonized easily but doesnt have

> > enough strength to hurt anyone. I was impressed

> at

> > first with the psychiatrist, and he agreed that he

> > thought it was Lewy Body, so why did he put him on

> > clonaphine and the fentanyl patch, part of the

> > morphine drugs? Now he is a complete mess. I am

> > beside myself as to what to do about this. Does

> > anyone have any suggestions? I'm about ready to

> > call

> > off all the drugs except Celexa, Flomax, Tylenol,

> > and

> > the antibiotic for the UTI. Of course, the HN

> > doesn't

> > want this, because they would have to take care of

> > him!

> >

>

=== message truncated ===

__________________________________________________

June 29, 2006

El K. wrote:

>I couldn't find the drug " Clonapine " but if it's " Clonapam " it's ATIVAN. Which

is a NOT DRUG for people with LBD. The psychiatrist started my husband on

Depakote a month ago, 500 mg. once a day, and for him it has really helped. We

all know that this is a tricky disease as far as drugs go. What works for one

person doesn't work for another.

>

Look for " Klonopin, " which is the trade name for clonazepam. It is a

benzodiazepine and an anticonvulsant medication.

jacqui

June 29, 2006

El K. wrote:

>I couldn't find the drug " Clonapine " but if it's " Clonapam " it's ATIVAN. Which

is a NOT DRUG for people with LBD. The psychiatrist started my husband on

Depakote a month ago, 500 mg. once a day, and for him it has really helped. We

all know that this is a tricky disease as far as drugs go. What works for one

person doesn't work for another.

>

Look for " Klonopin, " which is the trade name for clonazepam. It is a

benzodiazepine and an anticonvulsant medication.

jacqui

June 29, 2006

The generic name for ATIVAN is lorazepam.

>

> >I couldn't find the drug " Clonapine " but if it's " Clonapam " it's

ATIVAN. Which is a NOT DRUG for people with LBD. The psychiatrist

started my husband on Depakote a month ago, 500 mg. once a day, and

for him it has really helped. We all know that this is a tricky

disease as far as drugs go. What works for one person doesn't work

for another.

> >

>

> Look for " Klonopin, " which is the trade name for clonazepam. It

is a

> benzodiazepine and an anticonvulsant medication.

>

> jacqui

>

June 29, 2006

The generic name for ATIVAN is lorazepam.

>

> >I couldn't find the drug " Clonapine " but if it's " Clonapam " it's

ATIVAN. Which is a NOT DRUG for people with LBD. The psychiatrist

started my husband on Depakote a month ago, 500 mg. once a day, and

for him it has really helped. We all know that this is a tricky

disease as far as drugs go. What works for one person doesn't work

for another.

> >

>

> Look for " Klonopin, " which is the trade name for clonazepam. It

is a

> benzodiazepine and an anticonvulsant medication.

>

> jacqui

>

June 29, 2006

This is so sad Donna R., What a terrible thing to see your mother go

through. I can put my husband in a home where his daughter has nursed for 20

years.

( if she continues to nurse) and she will look after him. I want to keep him

home as long as possible, with our children's help.

Imogene

In a message dated 6/29/2006 11:26:47 PM Central Daylight Time,

twomido@... writes:

Jan,

I don't know if you remember my screaming, or talking rather loudly to the

people at the nh that Mom was in for a year.

I had all the same issues. I brought her clothes home to wash because she

had enough for a week or two, but nothing ever came up from the wash in that

time.

Then I saw one of her good shirts going down the hall on someone else's

back. I told the nurse and she said it couldn't be my mom's. I suggested we

look at the neck where I marked it. It had Mom's name in big black letters. I

put it right on the shirt, not even on labels. They took it off the woman

and gave it to me.

I always knew when they gave Mom her meds prior to eating. She wouldn't be

able to eat. I asked and asked for them to be given after a meal. And that

was hard to have happen unless they were busy. And she got very little

medication. It took me 6 months to get her off what the hospital put her on,

Then they had nerve enough to say to me that I kept changing her meds. I said

I never changed anything as it took an MD to do it. The only thing I wanted

was her off it. One time I caught a nurse giving her a whole pill. I asked

why she did that. She said she was suppose to it said 50% and the pill was

..50. I said no, she has been getting 50% of a whole pill and that is .25 (if

the pill was .50) Then they started to order pills in the .25 because their

nurses couldn't understand half a pill.

I can still go on and on Jan. So I really recommend you look at the " 20

things Nursing Home ......pamphlet I told you about yesterday. It really looks

good and they are trying to stop nhs from the way they are operating.

They use to blame mom for stuff. I remember telling them she wasn't

responsible or she wouldn't be there. They are responsible and that was what I

was

paying them for.

And I couldn't get her out. The MD asked me why I didn't leave if I was so

unhappy. I told him I had tried on 2 or 3 occasions. Their records were so

bad about her, no nh would take her and she was on Medicaid.

The biggest problem I had was that they would turn stuff around. I caught

them not feeding her. When I confronted a nurse about it she said the notes

said the family has " decided not to feed. " What I had said was that they

could not depend on ME coming in to feed her and that I expected them to do it.

I had fed her every meal but breakfast for the whole year.

For those who have a good nh, or can afford to keep them at home, that is a

good idea. But I wouldn't do it again no matter what it cost me.

Sorry for ranting but all you said just brought it all up again. Guess I

have a few unfinished things to deal with yet. And she died in

" 02!!!!!!!!!!!!!!

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th

year in a nh.

She was almost 89 when she died in '02

No dx other than mine.

June 29, 2006

Jan,

I don't know if you remember my screaming, or talking rather loudly to the

people at the nh that Mom was in for a year.

I had all the same issues. I brought her clothes home to wash because she had

enough for a week or two, but nothing ever came up from the wash in that time.

Then I saw one of her good shirts going down the hall on someone else's back. I

told the nurse and she said it couldn't be my mom's. I suggested we look at the

neck where I marked it. It had Mom's name in big black letters. I put it right

on the shirt, not even on labels. They took it off the woman and gave it to me.

I always knew when they gave Mom her meds prior to eating. She wouldn't be able

to eat. I asked and asked for them to be given after a meal. And that was hard

to have happen unless they were busy. And she got very little medication. It

took me 6 months to get her off what the hospital put her on, Then they had

nerve enough to say to me that I kept changing her meds. I said I never changed

anything as it took an MD to do it. The only thing I wanted was her off it.

One time I caught a nurse giving her a whole pill. I asked why she did that.

She said she was suppose to it said 50% and the pill was .50. I said no, she

has been getting 50% of a whole pill and that is .25 (if the pill was .50)

Then they started to order pills in the .25 because their nurses couldn't

understand half a pill.

I can still go on and on Jan. So I really recommend you look at the " 20 things

Nursing Home ......pamphlet I told you about yesterday. It really looks good

and they are trying to stop nhs from the way they are operating.

They use to blame mom for stuff. I remember telling them she wasn't responsible

or she wouldn't be there. They are responsible and that was what I was paying

them for.

And I couldn't get her out. The MD asked me why I didn't leave if I was so

unhappy. I told him I had tried on 2 or 3 occasions. Their records were so bad

about her, no nh would take her and she was on Medicaid.

The biggest problem I had was that they would turn stuff around. I caught them

not feeding her. When I confronted a nurse about it she said the notes said the

family has " decided not to feed. " What I had said was that they could not

depend on ME coming in to feed her and that I expected them to do it. I had fed

her every meal but breakfast for the whole year.

For those who have a good nh, or can afford to keep them at home, that is a good

idea. But I wouldn't do it again no matter what it cost me.

Sorry for ranting but all you said just brought it all up again. Guess I have a

few unfinished things to deal with yet. And she died in " 02!!!!!!!!!!!!!!

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02

No dx other than mine.

Re: MediCal/Medicaid

> >

> > A couple of comments to your good information -

> > Donna,

> > I believe you can include the burial/funeral

> > expenses

> > in part of the spenddown. If we had had enough

> > assets

> > that we would have had to do that, we could have

> > used

> > the funera/burial prepaid plans as part of the

> > spenddown. Also, I'm not sure the house would be

> > exempt no matter where it was if your mother was a

> > single person, as I understand the house would

> have

> > had to be sold or used as part of the spenddown.

> > Jan,

> > I'm curious about the $2378 you write that MediCal

> > is

> > paying you. How does that work? In Kansas, we

> are

> > allowed only $1607 for both our incomes, and

> > anything

> > over that has to be paid by us out of our pocket.

> > You

> > can deduct $50 for personal expenses; rent or

> house

> > payments (which I can't do because my daughter

> paid

> > off my house - a mistake on the advice of the

> > attorney, because I could be using that house

> > payment

> > in our income reduction; the amount of taxes and

> > insurance on the house over $220, which in our

> case

> > is

> > only $80, so it's not that much help. I would

> have

> > been better off to just borrow the money from my

> > daughter and paid her loan payments, and then I

> > wouldn't have to be paying the NH $723 out of my

> > pocket. THis is in addition to what Medicaid is

> > paying, plus now his NH insurance of $100 per day.

>

> > So, I'm curious as to why MediCal is paying you,

> or

> > is

>

=== message truncated ===

__________________________________________________

Do You Yahoo!?

Tired of spam? Yahoo! Mail has the best spam protection around

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June 29, 2006

Oh Donna, it does sound like the same old story.

The new director seems so promising. I am going to

give it a little more time. He really is turning

things around there, but it takes time with these

people on the staff. He has to break them of their old

habits. I am going to go to him and complain, because

he is real good at getting the people to listen, when

they listen to no one else. I seem to get good results

when I speak to him, but I hate to keep running to the

director. I would like for the staff to correct

themselves before I have to go to the top guy and

complain, but I guess that doesn't happen.

Sorry, I opened up all those old wounds with your mom

and her experiences.

I will check out the " 20 Things Nursing Home Pamphlet.

Thanks. Jan

--- Donna Mido wrote:

> Jan,

>

> I don't know if you remember my screaming, or

> talking rather loudly to the people at the nh that

> Mom was in for a year.

>

> I had all the same issues. I brought her clothes

> home to wash because she had enough for a week or

> two, but nothing ever came up from the wash in that

> time.

>

> Then I saw one of her good shirts going down the

> hall on someone else's back. I told the nurse and

> she said it couldn't be my mom's. I suggested we

> look at the neck where I marked it. It had Mom's

> name in big black letters. I put it right on the

> shirt, not even on labels. They took it off the

> woman and gave it to me.

>

> I always knew when they gave Mom her meds prior to

> eating. She wouldn't be able to eat. I asked and

> asked for them to be given after a meal. And that

> was hard to have happen unless they were busy. And

> she got very little medication. It took me 6 months

> to get her off what the hospital put her on, Then

> they had nerve enough to say to me that I kept

> changing her meds. I said I never changed anything

> as it took an MD to do it. The only thing I wanted

> was her off it. One time I caught a nurse giving

> her a whole pill. I asked why she did that. She

> said she was suppose to it said 50% and the pill was

> .50. I said no, she has been getting 50% of a whole

> pill and that is .25 (if the pill was .50) Then

> they started to order pills in the .25 because their

> nurses couldn't understand half a pill.

>

> I can still go on and on Jan. So I really recommend

> you look at the " 20 things Nursing Home

> ......pamphlet I told you about yesterday. It

> really looks good and they are trying to stop nhs

> from the way they are operating.

>

> They use to blame mom for stuff. I remember telling

> them she wasn't responsible or she wouldn't be

> there. They are responsible and that was what I was

> paying them for.

>

> And I couldn't get her out. The MD asked me why I

> didn't leave if I was so unhappy. I told him I had

> tried on 2 or 3 occasions. Their records were so

> bad about her, no nh would take her and she was on

> Medicaid.

>

> The biggest problem I had was that they would turn

> stuff around. I caught them not feeding her. When

> I confronted a nurse about it she said the notes

> said the family has " decided not to feed. " What I

> had said was that they could not depend on ME coming

> in to feed her and that I expected them to do it. I

> had fed her every meal but breakfast for the whole

> year.

>

> For those who have a good nh, or can afford to keep

> them at home, that is a good idea. But I wouldn't

> do it again no matter what it cost me.

>

> Sorry for ranting but all you said just brought it

> all up again. Guess I have a few unfinished things

> to deal with yet. And she died in

> " 02!!!!!!!!!!!!!!

>

> Donna R

>

> Caregave for Mom (after I brought her from WI to MI)

> for 3 years and 4th year in a nh.

>

> She was almost 89 when she died in '02

>

> No dx other than mine.

>

> Re: Venting

>

> Jan, VENT! You go girl! I would and have done the

> same thing when my darling

> was not cared for properly, and he hollered all

> night in pain. He had an

> infection that

> nearly killed him, after four surgeries. I called

> every personnel in the

> hospital, and when I got there, they were all in his

> room. I fired one doctor

> right then and there. Another surgery finally took

> all the infection out of the

> front of his leg, after he had been on several

> antibotics for weeks. That

> pocket of infection had to be cut out, and then the

> Doctor asked me to take

> care of packing the huge 5 " long hole in his leg. I

> did that several weeks three

> times a day. The infection was gone and I made darn

> sure it didn't come

> back.

>

> Holler, yes I did. We had been through enough, for

> months, and to hear him

> holler was the last straw. My nerves just about

> snapped.

>

> Imogene

> Caregiver for my True Texas Gentleman husband of 35

> years. He has LBD with

> Parkinsonism.

>

> In a message dated 6/29/2006 3:22:42 AM Central

> Daylight Time,

> janetcolello@... writes:

>

> Hi Donna,

> I have had problems with the nursing home wanting to

> sedate Jim too, to keep him calm so he won't try to

> stand up or be combative with anyone and for staff

> convenience. I am there everyday and like a thorne

> in

> their side. I found that Jim was sedated before

> dinner

> one time and I got on that nurse like a bee on

> honey.

> They stated that Jim did not eat dinner that night.

> Well, he was drugged. I was so mad I told every

> nurse

> I saw in the hallway what that nurse did and I even

> talked to residents about it. That nurse was very

> embarrassed for doing such a dumb thing, but it was

> a

> convenient time for her to give Jim the drugs. She

> is

> no longer at the facility. Worse part is she tried

> to

> lie and tell me she didn't give Jim the drugs. Then

> a

> few minutes later she turned around and said, she

> tells Jim, " Jan (Me) says for him to take the drugs

> now. " So, I said you did give him the drugs at this

> time and she said well, yeah, but not to make him

> drowsy and I said, " You didn't give him the

> Seroquel? "

> and she said, " Oh yeah, I did give him that. " Now, I

> have gone to the head nurse and complained and the

> nurse that gave Jim the drugs before dinner is no

> longer there. They are really careful now on giving

> Jim any drugs that make him drowsy or that he should

> not have. They call me before they order anything.

> I

> show up at all hours of the day, so they do not

> want

> me catching them giving Jim anything they shouldn't

> and so far everything has been good for about 3

> weeks

> now. Another thing that was getting me very angry

> is

> that they were strapping Jim to his chair, because

> he

> wants to stand up and they criss cross the belt and

> tie it in knots around the back of the chair and it

> is

> very hard to undo. Staff was not changing him,

> because

> they do not want to take the time to undo all the

> straps and knots and then tie it up again and when

> I

> would take Jim into the bathroom he was soaking wet

> and I was screaming mad and told them that I am

> going

> to administration next if this is not taken care of

> and now they have a belt on him that locks and Jim

> does not know how to undo it, but it is easy for

> staff

> to remove and Jim is getting changed now.

> Another thing I am bothered with is the fact that I

> mark all of Jim's clothes very clearly. I use iron

> on

> patches and write Jim's name in big letters with

> laundry ink on the iron on patches. I iron them to

> the

> inside of Jim's clothes, you can't miss his name

> and

>

=== message truncated ===

__________________________________________________

June 29, 2006

Jan,

You don't have to be sorry you open old wounds, they need to drain. You are

fortunate you have a Dir. you can work with. I didn't have that either.

The best luck I had was to slip a $50. bill in an envelope to one of the people

taking care of her and I never had mom want again. I should have paid the girl

more but Mom died not to long after I gave it to her When she was there, Mom

always got taken care of. I guess she was working for the next 50. It was

worth it. .

I really don't know how you turn it around with staff. I hope he can. And they

need training. It is to their benefit also. It really takes less time to do it

as we do with LBD people then to try and hurry and push as they tried to fit Mom

into a round hole and she was a square peg. But at this nh, you didn't need

dementia to not get taken care of. It was just a bad place.

Hope it helps to shout together. Hope it helps to know others get mad too.

Hugs for working so hard at loving Jim.

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02

No dx other than mine.

Re: Venting

>

> Jan, VENT! You go girl! I would and have done the

> same thing when my darling

> was not cared for properly, and he hollered all

> night in pain. He had an

> infection that

> nearly killed him, after four surgeries. I called

> every personnel in the

> hospital, and when I got there, they were all in his

> room. I fired one doctor

> right then and there. Another surgery finally took

> all the infection out of the

> front of his leg, after he had been on several

> antibotics for weeks. That

> pocket of infection had to be cut out, and then the

> Doctor asked me to take

> care of packing the huge 5 " long hole in his leg. I

> did that several weeks three

> times a day. The infection was gone and I made darn

> sure it didn't come

> back.

>

> Holler, yes I did. We had been through enough, for

> months, and to hear him

> holler was the last straw. My nerves just about

> snapped.

>

> Imogene

> Caregiver for my True Texas Gentleman husband of 35

> years. He has LBD with

> Parkinsonism.

>

> In a message dated 6/29/2006 3:22:42 AM Central

> Daylight Time,

> janetcolello@... writes:

>

> Hi Donna,

> I have had problems with the nursing home wanting to

> sedate Jim too, to keep him calm so he won't try to

> stand up or be combative with anyone and for staff

> convenience. I am there everyday and like a thorne

> in

> their side. I found that Jim was sedated before

> dinner

> one time and I got on that nurse like a bee on

> honey.

> They stated that Jim did not eat dinner that night.

> Well, he was drugged. I was so mad I told every

> nurse

> I saw in the hallway what that nurse did and I even

> talked to residents about it. That nurse was very

> embarrassed for doing such a dumb thing, but it was

> a

> convenient time for her to give Jim the drugs. She

> is

> no longer at the facility. Worse part is she tried

> to

> lie and tell me she didn't give Jim the drugs. Then

> a

> few minutes later she turned around and said, she

> tells Jim, " Jan (Me) says for him to take the drugs

> now. " So, I said you did give him the drugs at this

> time and she said well, yeah, but not to make him

> drowsy and I said, " You didn't give him the

> Seroquel? "

> and she said, " Oh yeah, I did give him that. " Now, I

> have gone to the head nurse and complained and the

> nurse that gave Jim the drugs before dinner is no

> longer there. They are really careful now on giving

> Jim any drugs that make him drowsy or that he should

> not have. They call me before they order anything.

> I

> show up at all hours of the day, so they do not

> want

> me catching them giving Jim anything they shouldn't

> and so far everything has been good for about 3

> weeks

> now. Another thing that was getting me very angry

> is

> that they were strapping Jim to his chair, because

> he

> wants to stand up and they criss cross the belt and

> tie it in knots around the back of the chair and it

> is

> very hard to undo. Staff was not changing him,

> because

> they do not want to take the time to undo all the

> straps and knots and then tie it up again and when

> I

> would take Jim into the bathroom he was soaking wet

> and I was screaming mad and told them that I am

> going

> to administration next if this is not taken care of

> and now they have a belt on him that locks and Jim

> does not know how to undo it, but it is easy for

> staff

> to remove and Jim is getting changed now.

> Another thing I am bothered with is the fact that I

> mark all of Jim's clothes very clearly. I use iron

> on

> patches and write Jim's name in big letters with

> laundry ink on the iron on patches. I iron them to

> the

> inside of Jim's clothes, you can't miss his name

> and

>

=== message truncated ===

__________________________________________________

June 29, 2006

I agree Imogene,

Keep him home as long as you can. You are lucky he will have a family member

there with him, if and when he does have to go. I had no help and we had used

all the money. And I was tired. No one believed me that she slept every OTHER

night.

She wasn't in the nh for 2 weeks when one of the nurses said to me, " she really

doesn't like to sleep, does she? " But she eventually started to go to bed with

everyone else and stayed in bed the night. That was better than she did here.

It was hard and I still think about it when I hear stories like Jan's. There

are some good homes and good caregivers in alfs out there, but they are hard to

find. And they usually cost lots of money.