Re: My Mom's patch for pain

[Guest guest]

I have both heard and experienced before that pharmacists actually know a lot

more about the meds than any doctor does. The doctors prescribe what the sales

people come giving samples for and then once the samples are gone the doctor

keeps prescribing that med. The pharmacists know of all the interactions and

therefore, it seems as we all can contact the pharmacist before the doctor for

medicine related issues.

>

> Hi all,

>

> I asked the nurse about my Mom's pain patch, he looked it up

> and it was 700 mg. of Lidocaine. The Pharmacist was sitting at

> the desk and asked what med's she was on, as the Ultram the low

> dose she is taking, 50 mg. will not cause hallucinations, it

> might interact with some of her med's though. He said the

> Seroquel 100 mg might be too much since she doesn't get wild,

> doesn't get mad, doesn't try to run away from the home, none

> of that so he is telling the dr. to ring that down to 75mg.

> And the Detrol or one of those pills for incontinence he said

> was not good at all and could be making her hallucinations

> more, so he is telling the dr. to take her off that one. So

> we'll see if this works. He said the arm is still freshly broken

> it will take more time for the pain to go away and she will still

> need the Ultram for a while still.

>

> Can you imagine getting more help since she has been there from

> a Pharmacist instead of a dr. or nurses? Amazing. I think God

> had that pharmacist to be sitting at that desk. Because I always

> ask questions and get no good answers for nothing. But this

> man seemed to have some answers and smart man.

>

> Love and prayers,

>

>

[Guest guest]

Hi ,

My mother in law sees a neurologist at UCSF and we also have access to a

clinical pharmacist there as well who is a part of the teams there. I run

everything by him, even vitamins (at his invitation to do so) and it's

great having a pharmacist as a resource to do this with. He is up on the

not so prominent facts about medicines and various dementias, but he is

especially good with the Parkinson's and lbd dementias and potential trouble

medications. The way I look at it this CP is a specialist. Pharmacy

medicine is his specialty and he knows it well. We see the neurologist,

the urologist, the internist, the dermatologist and though they all have

medical degrees, they are all specialists. Same for a pharmacist. Find a

good one and they are part of the team. What a blessing you've found one

who is up on this stuff and has the time and desire to care to help! J

Detral is on the absolute " no " list - he told us it is known to cause

hallucinations occasionally in LBD patents and also worsening the

Parkinson's symptoms. This is why we did the PTNS treatments instead of any

medications for this issue. Those treatments worked really well but her

disease has progressed beyond that now. We are currently using a gram of

tylenol every 6 hours and hydrocodone (adjusting for the tylenol) at night

and so far so good but things change fast so I am not feeling comfortable

that we have the magic combination yet.

Hope this helps J

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of L. A.

Sent: Monday, January 24, 2011 5:55 PM

To: LBDcaregivers

Subject: My Mom's patch for pain

Hi all,

I asked the nurse about my Mom's pain patch, he looked it up

and it was 700 mg. of Lidocaine. The Pharmacist was sitting at

the desk and asked what med's she was on, as the Ultram the low

dose she is taking, 50 mg. will not cause hallucinations, it

might interact with some of her med's though. He said the

Seroquel 100 mg might be too much since she doesn't get wild,

doesn't get mad, doesn't try to run away from the home, none

of that so he is telling the dr. to ring that down to 75mg.

And the Detrol or one of those pills for incontinence he said

was not good at all and could be making her hallucinations

more, so he is telling the dr. to take her off that one. So

we'll see if this works. He said the arm is still freshly broken

it will take more time for the pain to go away and she will still

need the Ultram for a while still.

Can you imagine getting more help since she has been there from

a Pharmacist instead of a dr. or nurses? Amazing. I think God

had that pharmacist to be sitting at that desk. Because I always

ask questions and get no good answers for nothing. But this

man seemed to have some answers and smart man.

Love and prayers,

[Guest guest]

I believe you are right on with this about pharmacists knowing

more about med's. I am so glad he was sitting at the desk listening

to me, I was LOUD and CLEAR talking. When I go to the nurse up

at the station, whoever is around, there are always outside

people either doing books, checking this doing that up there, I

want them to know that my Mom broke her arm up there falling

in the bathroom. There are people up there falling all the time!!

One poor Russian lady, she played the piano and had only been

there for rehab I believe it was and had been there about 2 months

fell last week and she felt horrible, they didn't exray her I heard,

well she fell again the next day or the day after and they took her

to the hospital and she passed away yesterday. One week gone

from 2 falls up there. Another little tiny lady, 89, so precious, with

full blown alzheimers, walked around everywhere all the time, and

she fell and busted her head, had 2 stitches, 3 weeks ago, and now

her daughter has gotten hospice and is just devastated, as her mom

is in bed all the time and refuses to eat or drink. God bless these

precious angels that live in the homes and it seems they are not

being watched at all. Some have the buzzers attached to them to

go off if they fall, well, my Mom was suppose to have had one on

her, and she fell last week and luckily didn't break anything! My

Mom is too weak to walk anymore. She is now refusing rehab on her

arm. She said it is horrible to do any exercise at all, she feels it

is killing her. So I went to the Medicare coordinator yesterday and

asked her how many days Medicare is paying my Mom's rehab, 32

days now, I told her my Mom has refused rehab for 2 or 3 days now,

that if she is not going, then Medicare can't be charged for these

services. I am not about to allow this home get big time money

off my mother for rehab she is not doing. That's one reason I read

all the time that there may not be Medicare in years to come,

everyone is abusing it for this and that and especially the high

dollar rehab the nursing homes charge Medicare. It is a scam

in some places I think, and up there they are not getting away with

it. I went back up to this lady with my Mom in her wheelchair and

had my Mom tell her why she hated rehab. So the medicare

coordinator is going to talk to the manager of the rehab dept. to

see what they can do. I am sure they will come up with some way

to keep this going even if they have to work with her in her room.

I thought Medicare only paid 20 days at a time. I think they do,

but she has Medicaid that pays for her nursing home stay, and they

pick up what Medicare doesn't pay, so its two that are getting

taken to the cleaners. If I had not let this medicare coordinator

know what was going on, they would be charging medicare/medicaid

out the kazoo for as long as they possibly could, probably another

month or 2. They use to always have a planning meeting with the

residents or me about what is expected of what my Mom will get

out of rehab, I never got a letter, nothing this time around.

If anyone else out there has had something similar happen to them

please let me know. I think there has got to be others that are being

ripped off by their nursing home with things such as this.

God bless and take care all,

in Texas

I have both heard and experienced before that pharmacists actually know a

lot more about the meds than any doctor does. The doctors prescribe what the

sales people come giving samples for and then once the samples are gone

the doctor keeps prescribing that med. The pharmacists know of all the

interactions and therefore, it seems as we all can contact the pharmacist

before

the doctor for medicine related issues.

[Guest guest]

Dorothy you are a good resource and once again like Joan, know

about the pharmacists great resources about medicine, who would

of ever thought?? I've struggled and struggled up at this home,

like pulling teeth, to get a straight answer from the RN, LVN, and

Director of Nurses, I never have seen her doctor, he comes on

Thursday nights or as they have told me, there is no telling what

day or time he will show up. Useless. But the pharmacist is not

useless thank goodness.

Is your mother in a nursing home or living with you?

God bless to you Dorothy,

in Texas

Hi ,

My mother in law sees a neurologist at UCSF and we also have access to a

clinical pharmacist there as well who is a part of the teams there. I run

everything by him, even vitamins (at his invitation to do so) and it's

great having a pharmacist as a resource to do this with. He is up on the

not so prominent facts about medicines and various dementias, but he is

especially good with the Parkinson's and lbd dementias and potential

trouble

medications. The way I look at it this CP is a specialist. Pharmacy

medicine is his specialty and he knows it well. We see the neurologist,

the urologist, the internist, the dermatologist and though they all have

medical degrees, they are all specialists. Same for a pharmacist. Find a

good one and they are part of the team. What a blessing you've found one

who is up on this stuff and has the time and desire to care to help! J

Detral is on the absolute " no " list - he told us it is known to cause

hallucinations occasionally in LBD patents and also worsening the

Parkinson's symptoms. This is why we did the PTNS treatments instead of any

medications for this issue. Those treatments worked really well but her

disease has progressed beyond that now. We are currently using a gram of

tylenol every 6 hours and hydrocodone (adjusting for the tylenol) at night

and so far so good but things change fast so I am not feeling comfortable

that we have the magic combination yet.

Hope this helps J

Dorothy

[Guest guest]

Hi ,

I am so sorry for the suffering your Mom has been going through. This is why

hospice is called in to the nursing homes, to make sure their loved one is

properly being taken care of. I work in hospice and I am in the local nursing

home everyday because most of my patients are there.

You are so right about the Medicare and physical therapy. The nursing home where

I see my patients,just recently had their Medicare license re-instated after a

year. (They changed ownership when all of this started getting better.)

I was told that several of my patients were going to have to be discharged from

hospice so they would be able to get skilled physical therapy. (Changed their

way of billing,from medicaid to a Medicare skilled bed.)

One of my patients' has end stage COPD and I called the legal power of

attorney,her daughter,who lives in Georgia. I told her I was going to have to

discharge her so they could bill her as 'Medicare Skilled PT.' She said, " No, I

refuse to have her discharged from hospice! " That was all I needed to hear. It

has to be the decision of the POA or family member. They were not allowed to do

this. One of the other patient's with dementia was discharged without the

notification of the family member. Simply because they could get the patient to

'sign' for the skilled bed. She had no idea what she was doing. That is going to

be changed here shortly. You DO have a choice and you need to make it clear what

you want.

Hospice is the 'extra eyes and ears' you need at a nursing home. I can't tell

you how many times a urinary infection or an upper respiratory infection was

caught and treated because I was there to call the doctor and get an antibiotic.

Most of the nurses in the home where I see patients do love their patients and

do the best they can, but when you have other people looking in on some,things

do go a lot better and faster for those people. I pray things will get better.

HUGGGSSS, ,RN from hospice

[Guest guest]

,

I, too, agree that a pharmacist is an integral part of a person’s care team.

For several years now, our insurance carrier temporarily assigned a pharmacist

and a case manager to higher risk patients to oversee their meds and care when

such patients were experiencing something like a major surgery. In more recent

years, because of Medicare part B and D laws, any patient taking lots and meds

who may fall into the “donut hole†will automatically get assigned a

pharmacist. That pharmacist will contact the patient yearly to review all meds,

including over the counter and herbal supplements. Because of privacy laws, the

pharmacist can only speak with the patient unless the patient gives permission

to speak with someone else OR a POA is on file.

I know about the above because, due to language barriers, I’ve been overseeing

my parents’ medical care for many years. I didn’t pay much attention to the

pharmacist’s calls the first few years. However, as my parents got older, and

especially now with my dad’s dementia, I’ve kept the pharmacist’s number

and make her one of the first calls when I have medication-related concerns.

Doctors will defer to her and change meds as needed. This is an invaluable

tool, especially when your loved one is experiencing unusual side effects.

Carmen

From: dsinouye

Sent: Monday, January 24, 2011 11:01 PM

To: LBDcaregivers

Subject: RE: My Mom's patch for pain

Hi ,

My mother in law sees a neurologist at UCSF and we also have access to a

clinical pharmacist there as well who is a part of the teams there. I run

everything by him, even vitamins (at his invitation to do so) and it's

great having a pharmacist as a resource to do this with. He is up on the

not so prominent facts about medicines and various dementias, but he is

especially good with the Parkinson's and lbd dementias and potential trouble

medications. The way I look at it this CP is a specialist. Pharmacy

medicine is his specialty and he knows it well. We see the neurologist,

the urologist, the internist, the dermatologist and though they all have

medical degrees, they are all specialists. Same for a pharmacist. Find a

good one and they are part of the team. What a blessing you've found one

who is up on this stuff and has the time and desire to care to help! J

Detral is on the absolute " no " list - he told us it is known to cause

hallucinations occasionally in LBD patents and also worsening the

Parkinson's symptoms. This is why we did the PTNS treatments instead of any

medications for this issue. Those treatments worked really well but her

disease has progressed beyond that now. We are currently using a gram of

tylenol every 6 hours and hydrocodone (adjusting for the tylenol) at night

and so far so good but things change fast so I am not feeling comfortable

that we have the magic combination yet.

Hope this helps J

Dorothy

From: mailto:LBDcaregivers%40yahoogroups.com

[mailto:mailto:LBDcaregivers%40yahoogroups.com]

On Behalf Of L. A.

Sent: Monday, January 24, 2011 5:55 PM

To: mailto:LBDcaregivers%40yahoogroups.com

Subject: My Mom's patch for pain

Hi all,

I asked the nurse about my Mom's pain patch, he looked it up

and it was 700 mg. of Lidocaine. The Pharmacist was sitting at

the desk and asked what med's she was on, as the Ultram the low

dose she is taking, 50 mg. will not cause hallucinations, it

might interact with some of her med's though. He said the

Seroquel 100 mg might be too much since she doesn't get wild,

doesn't get mad, doesn't try to run away from the home, none

of that so he is telling the dr. to ring that down to 75mg.

And the Detrol or one of those pills for incontinence he said

was not good at all and could be making her hallucinations

more, so he is telling the dr. to take her off that one. So

we'll see if this works. He said the arm is still freshly broken

it will take more time for the pain to go away and she will still

need the Ultram for a while still.

Can you imagine getting more help since she has been there from

a Pharmacist instead of a dr. or nurses? Amazing. I think God

had that pharmacist to be sitting at that desk. Because I always

ask questions and get no good answers for nothing. But this

man seemed to have some answers and smart man.

Love and prayers,

[Guest guest]

Hi All,

I have a fine pharmacist. He has prevented several near catastrophes.

He has caught what the Doctor didn't know. So, know your Pharmacist and stick

with him if he helps you.

There is a difference between a Pharmaceutical salesman and a pharmacist.

Although the saleman may know tons about medication he is not the final word.

Love a lot,

Imogene

>

> Hi ,

>

> My mother in law sees a neurologist at UCSF and we also have access to a

> clinical pharmacist there as well who is a part of the teams there. I run

> everything by him, even vitamins (at his invitation to do so) and it's

> great having a pharmacist as a resource to do this with. He is up on the

> not so prominent facts about medicines and various dementias, but he is

> especially good with the Parkinson's and lbd dementias and potential trouble

> medications. The way I look at it this CP is a specialist. Pharmacy

> medicine is his specialty and he knows it well. We see the neurologist,

> the urologist, the internist, the dermatologist and though they all have

> medical degrees, they are all specialists. Same for a pharmacist. Find a

> good one and they are part of the team. What a blessing you've found one

> who is up on this stuff and has the time and desire to care to help! J

> Detral is on the absolute " no " list - he told us it is known to cause

> hallucinations occasionally in LBD patents and also worsening the

> Parkinson's symptoms. This is why we did the PTNS treatments instead of any

> medications for this issue. Those treatments worked really well but her

> disease has progressed beyond that now. We are currently using a gram of

> tylenol every 6 hours and hydrocodone (adjusting for the tylenol) at night

> and so far so good but things change fast so I am not feeling comfortable

> that we have the magic combination yet.

>

>

>

> Hope this helps J

>

> Dorothy

>

>

>

> From: LBDcaregivers [mailto:LBDcaregivers ]

> On Behalf Of L. A.

> Sent: Monday, January 24, 2011 5:55 PM

> To: LBDcaregivers

> Subject: My Mom's patch for pain

>

> Hi all,

>

> I asked the nurse about my Mom's pain patch, he looked it up

> and it was 700 mg. of Lidocaine. The Pharmacist was sitting at

> the desk and asked what med's she was on, as the Ultram the low

> dose she is taking, 50 mg. will not cause hallucinations, it

> might interact with some of her med's though. He said the

> Seroquel 100 mg might be too much since she doesn't get wild,

> doesn't get mad, doesn't try to run away from the home, none

> of that so he is telling the dr. to ring that down to 75mg.

> And the Detrol or one of those pills for incontinence he said

> was not good at all and could be making her hallucinations

> more, so he is telling the dr. to take her off that one. So

> we'll see if this works. He said the arm is still freshly broken

> it will take more time for the pain to go away and she will still

> need the Ultram for a while still.

>

> Can you imagine getting more help since she has been there from

> a Pharmacist instead of a dr. or nurses? Amazing. I think God

> had that pharmacist to be sitting at that desk. Because I always

> ask questions and get no good answers for nothing. But this

> man seemed to have some answers and smart man.

>

> Love and prayers,

>

>

>

>

>

[Guest guest]

,

Bless your heart for being the kind of nurse I had hoped for and expected in our

Hospice care.

My husband had pneumonia, and no one told me, and no one did a thing about it.

Not the NH, nor the Hospice Nurse. Look how many times our dear Jan helped her

Jim through pneumonia. I did once at home. I took him to the Hospital. When he

was at the NH how was I to know if they didn't call, nor sent him to a Hospital

on their own?

Our Hospice nurse did exactly as she thought was outlined for her. She helped my

very special Texas Husband to die. Nothing more nor less.

One thing that really upset me with her, is that she yanked his sheet back

exposing his extremely skinny long skinny legs that were cocked up and sprattled

out. She changed his diaper with all present. At least she did put another

diaper on. But she left him uncovered with the skinniest legs for all to gape

over. I was horrified! I know he had a very high fever, but she waited to

uncover him when it was far too late to have done any good to cool him down. She

left him and everyone else in the room with little, or no, dignity.

Yes, I complained loudly to her superior. I hope she got fired. She was so proud

of herself that she had to talk all the time about how much she knew about

helping a person to die. It was a horrible experience.

My sister had the finest help with Hospice. So, it all depends on the person. We

were assigned this woman at the last minute, and no one knew anything about her,

really.

Thanks for letting me sound off. I have been very angry with the way my darling

was treated,

Love a lot, it helps with problems like this,(I think)

Imogene

PS, this is one of the reasons I haven't been on the List much. There has been

too much pain, and anger. Everything reminds me of some part of it. I have

endured a lot of trials, but this is about the worst.

>

> Hi ,

>

> I am so sorry for the suffering your Mom has been going through. This is why

hospice is called in to the nursing homes, to make sure their loved one is

properly being taken care of. I work in hospice and I am in the local nursing

home everyday because most of my patients are there.

>

> You are so right about the Medicare and physical therapy. The nursing home

where I see my patients,just recently had their Medicare license re-instated

after a year. (They changed ownership when all of this started getting better.)

>

> I was told that several of my patients were going to have to be discharged

from hospice so they would be able to get skilled physical therapy. (Changed

their way of billing,from medicaid to a Medicare skilled bed.)

>

> One of my patients' has end stage COPD and I called the legal power of

attorney,her daughter,who lives in Georgia. I told her I was going to have to

discharge her so they could bill her as 'Medicare Skilled PT.' She said, " No, I

refuse to have her discharged from hospice! " That was all I needed to hear. It

has to be the decision of the POA or family member. They were not allowed to do

this. One of the other patient's with dementia was discharged without the

notification of the family member. Simply because they could get the patient to

'sign' for the skilled bed. She had no idea what she was doing. That is going to

be changed here shortly. You DO have a choice and you need to make it clear what

you want.

>

> Hospice is the 'extra eyes and ears' you need at a nursing home. I can't tell

you how many times a urinary infection or an upper respiratory infection was

caught and treated because I was there to call the doctor and get an antibiotic.

Most of the nurses in the home where I see patients do love their patients and

do the best they can, but when you have other people looking in on some,things

do go a lot better and faster for those people. I pray things will get better.

HUGGGSSS, ,RN from hospice

>

[Guest guest]

Imogene,

I'm glad you complained to that supervisor loudly. That is just horrible!

Even when a person has a high temp a light thin cotton sheet can be a

COMFORT beyond just providing some dignity. I'm so very sorry. No one

should have to endure this. I do hope she was fired as well and I hope that

company gets it's priorities straight on who they are serving and why and

what that means. I can tell you've been through a lot alone and I'm glad

you can vent and let it out. Hopefully that will save another from having

to endure what you and your dear husband did.

I can only imagine the pain and anger you feel about this experience on top

of the pain and grief of lose you have. I hope you can continue to speak up

or write about what you went through and what would be an improvement.

Perhaps there is a way you can be heard through the hospice provider. It

always amazes me how little we know about our " rights " and

" responsibilities " - and what we CAN do, such as taking our loved ones to

the hospital or to another doctor even if they are in a NH. We have been

through this a little and I did just that - took my mil out to her regular

internist and got some help and a phone call to the doc there when the x ray

showed he had a fractured vertebra! She was there temporarily to recover

from a severe arm/wrist fracture and multiple soft tissue injuries from a

bad fall in 2005. They kept telling us she was just complaining about pain

but my mil is tough, she went through a lot in her life and hardly ever

complained about anything so I knew it had to be a lot of pain to make her

complain of it so much. No one told me I could do anything and thank

goodness I just had the inspiration to try.

I would very much like to see development of a patient and family

caregiver's rights and what can be done to figure out these situations and

get a second opinion or see if there's something that can improve things.

And also how should home care and hospice be treating our loved ones and

those they live with. And when and how do we advocate for better.

God bless and keep you and thank you for speaking up.

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of The fishermans daughter

Sent: Tuesday, January 25, 2011 12:53 PM

To: LBDcaregivers

Subject: Re: My Mom's patch for pain

,

Bless your heart for being the kind of nurse I had hoped for and expected in

our Hospice care.

My husband had pneumonia, and no one told me, and no one did a thing about

it. Not the NH, nor the Hospice Nurse. Look how many times our dear Jan

helped her Jim through pneumonia. I did once at home. I took him to the

Hospital. When he was at the NH how was I to know if they didn't call, nor

sent him to a Hospital on their own?

Our Hospice nurse did exactly as she thought was outlined for her. She

helped my very special Texas Husband to die. Nothing more nor less.

One thing that really upset me with her, is that she yanked his sheet back

exposing his extremely skinny long skinny legs that were cocked up and

sprattled out. She changed his diaper with all present. At least she did put

another diaper on. But she left him uncovered with the skinniest legs for

all to gape over. I was horrified! I know he had a very high fever, but she

waited to uncover him when it was far too late to have done any good to cool

him down. She left him and everyone else in the room with little, or no,

dignity.

Yes, I complained loudly to her superior. I hope she got fired. She was so

proud of herself that she had to talk all the time about how much she knew

about helping a person to die. It was a horrible experience.

My sister had the finest help with Hospice. So, it all depends on the

person. We were assigned this woman at the last minute, and no one knew

anything about her, really.

Thanks for letting me sound off. I have been very angry with the way my

darling was treated,

Love a lot, it helps with problems like this,(I think)

Imogene

PS, this is one of the reasons I haven't been on the List much. There has

been too much pain, and anger. Everything reminds me of some part of it. I

have endured a lot of trials, but this is about the worst.

>

> Hi ,

>

> I am so sorry for the suffering your Mom has been going through. This is

why hospice is called in to the nursing homes, to make sure their loved one

is properly being taken care of. I work in hospice and I am in the local

nursing home everyday because most of my patients are there.

>

> You are so right about the Medicare and physical therapy. The nursing home

where I see my patients,just recently had their Medicare license re-instated

after a year. (They changed ownership when all of this started getting

better.)

>

> I was told that several of my patients were going to have to be discharged

from hospice so they would be able to get skilled physical therapy. (Changed

their way of billing,from medicaid to a Medicare skilled bed.)

>

> One of my patients' has end stage COPD and I called the legal power of

attorney,her daughter,who lives in Georgia. I told her I was going to have

to discharge her so they could bill her as 'Medicare Skilled PT.' She

said, " No, I refuse to have her discharged from hospice! " That was all I

needed to hear. It has to be the decision of the POA or family member. They

were not allowed to do this. One of the other patient's with dementia was

discharged without the notification of the family member. Simply because

they could get the patient to 'sign' for the skilled bed. She had no idea

what she was doing. That is going to be changed here shortly. You DO have a

choice and you need to make it clear what you want.

>

> Hospice is the 'extra eyes and ears' you need at a nursing home. I can't

tell you how many times a urinary infection or an upper respiratory

infection was caught and treated because I was there to call the doctor and

get an antibiotic. Most of the nurses in the home where I see patients do

love their patients and do the best they can, but when you have other people

looking in on some,things do go a lot better and faster for those people. I

pray things will get better. HUGGGSSS, ,RN from hospice

[Guest guest]

,

Thank you for your kind and loving letter. The Hospice that I had was fine

up front, and through many visits. The trouble came a day or two before

Don died.

The nurse we had left them, and we were assigned a new nurse, (which was

new to them too.). She did say she was putting morphine in his mouth every

hour. She said it drains into the throat and sedates them so they don't feel

pain. Yet, when I accidentally allowed too much water on the sponge, that

I was cooling his mouth with, she fussed at me. She said he will strangle

on it. Yet, it was no more than the morphine she was giving.

She was not nice all the way around, and I wonder what care he did

actually get.

When I went in to see him I told him I was there to take care of him and

would he give me his hand? He actually raised his hand and gave it to me. I

hope and pray he didn't suffer.

Is giving Morphine in the mouth the normal way for a dying person to

receive it?

Is it normal for the patient to get his diaper changed in front of

everyone? Is it normal for the nurse to throw the covers back an hour before

death

to help cool the patient?

I knew the end was soon when she changed his diaper. It took a while for

that to sink in, but after a while I realized what was going on. I trusted

her to tell us when he was expiring. If I had had my stethoscope I could

have known for sure that what she was doing was pure and the honest to goodness

truth. Her attitude caused a whole different ball game.

Yes, it's the nurse, not the company, even if he or she represents them.

Love a lot,

Imogene

In a message dated 1/26/2011 2:14:03 A.M. Central Standard Time,

karenjo918@... writes:

Dear Ms Imogene,

You and your husband suffered so much. There were so many times I wished I

could be there to help, but NE Arkansas is very far from you. I could pray

and that I did and continue to do.

Not all hospice companies are alike neither are all hospice nurses. I work

with one that doesn't seem to 'get it.' I'm not the best there is, but I

know what our philosophy is and I will do any and everything to keep my

patients and their families from hurting, unnecessarily.

I've been an RN for 27, almost 28 years. It wasn't until I joined this

forum that I really began to understand how to deal with patients suffering

from LBD or Alzheimer's. You all have educated me and continue to do so

everyday. I usually print out information and take it to work to educate the

nurses that want to know more. If it were not for this group, I wouldn't know

how to deal with my Dad and his LBD. Never heard of the disease until he

was diagnosed. Just thankful he had gone to a neurologist that knew and

diagnosed him correctly.

I will end this with some information regarding better care for your loved

one who is in hospice. Call the company and ask them what their policy is

regarding pain management and unnecessary suffering. Call the company if

your nurse isn't giving your loved one and you the care you thought you might

get.

We don't supply sitters, but our Social Worker has been able to get people

on Medicaid and they qualified for sitter services through them. We are

still able to continue to visit with the sitter service. Ask questions, if

you don't know. Keep calling until you get the answers you need. If the

hospice company isn't supplying the care you and your loved one needs, there is

probably another one close by that will. I pray nightly for the people on

this forum and our hospice families. May God bless you all. HUGS to

everyone!

[Guest guest]

Dear Imogene,

 

It isn't any 'hospice policy' to change a patient in front of other people. Nor

is it correct to throw the cover off of someone who is dying, to 'cool them

off.'

 

Liquid morphine can be given by mouth, but she shouldn't have scolded you for

keeping his mouth moist. The morphine dries out the mouth and I usually have

some wet toothettes to moisten the mouth. I have also used a moist washcloth for

the patient to suck the water out slowly. I stay with my patient and family and

tell them what to do as death gets closer.

 

At times, I go out into a hall and leave the family alone to tell their loved

one good bye,to hold his/her hand,tell them they love him/her.

 

Some nurses just don't need to be in hospice as they don't need to be in

hospitals either. You did the best you could at the time, and she will be

accountable to a much higher authority; God, at some point in time.

 

It hurts me to think some nurses are treating their patients and loved ones in

this fashion. My suggestion to anyone facing this situation, is to call the

hospice company. Ask for the supervisor to come out to the home and talk

to her directly, so that these things aren't allowed to continue.

 

I pray you will not feel guilty about anything. You loved your husband with all

you had and much more. You need to take good care of yourself after such a long

and traumatic journey.

I pray I can be as good to my patients and my Dad as you have been to your

husband. Many HUGGGSSSS!

Subject: Re: Re: My Mom's patch for pain

To: LBDcaregivers

Date: Thursday, January 27, 2011, 5:24 PM

 

,

Thank you for your kind and loving letter. The Hospice that I had was fine

up front, and through many visits. The trouble came a day or two before

Don died.

The nurse we had left them, and we were assigned a new nurse, (which was

new to them too.). She did say she was putting morphine in his mouth every

hour. She said it drains into the throat and sedates them so they don't feel

pain. Yet, when I accidentally allowed too much water on the sponge, that

I was cooling his mouth with, she fussed at me. She said he will strangle

on it. Yet, it was no more than the morphine she was giving.

She was not nice all the way around, and I wonder what care he did

actually get.

When I went in to see him I told him I was there to take care of him and

would he give me his hand? He actually raised his hand and gave it to me. I

hope and pray he didn't suffer.

Is giving Morphine in the mouth the normal way for a dying person to

receive it?

Is it normal for the patient to get his diaper changed in front of

everyone? Is it normal for the nurse to throw the covers back an hour before

death

to help cool the patient?

I knew the end was soon when she changed his diaper. It took a while for

that to sink in, but after a while I realized what was going on. I trusted

her to tell us when he was expiring. If I had had my stethoscope I could

have known for sure that what she was doing was pure and the honest to goodness

truth. Her attitude caused a whole different ball game.

Yes, it's the nurse, not the company, even if he or she represents them.

Love a lot,

Imogene

In a message dated 1/26/2011 2:14:03 A.M. Central Standard Time,

karenjo918@... writes:

Dear Ms Imogene,

You and your husband suffered so much. There were so many times I wished I

could be there to help, but NE Arkansas is very far from you. I could pray

and that I did and continue to do.

Not all hospice companies are alike neither are all hospice nurses. I work

with one that doesn't seem to 'get it.' I'm not the best there is, but I

know what our philosophy is and I will do any and everything to keep my

patients and their families from hurting, unnecessarily.

I've been an RN for 27, almost 28 years. It wasn't until I joined this

forum that I really began to understand how to deal with patients suffering

from LBD or Alzheimer's. You all have educated me and continue to do so

everyday. I usually print out information and take it to work to educate the

nurses that want to know more. If it were not for this group, I wouldn't know

how to deal with my Dad and his LBD. Never heard of the disease until he

was diagnosed. Just thankful he had gone to a neurologist that knew and

diagnosed him correctly.

I will end this with some information regarding better care for your loved

one who is in hospice. Call the company and ask them what their policy is

regarding pain management and unnecessary suffering. Call the company if

your nurse isn't giving your loved one and you the care you thought you might

get.

We don't supply sitters, but our Social Worker has been able to get people

on Medicaid and they qualified for sitter services through them. We are

still able to continue to visit with the sitter service. Ask questions, if

you don't know. Keep calling until you get the answers you need. If the

hospice company isn't supplying the care you and your loved one needs, there is

probably another one close by that will. I pray nightly for the people on

this forum and our hospice families. May God bless you all. HUGS to

everyone!

[Guest guest]

Imogene,

In the last weeks of my Mom's life, we had hospice. One of the meds that I had

to give her was Roxinol, which I am told was a very diluted form of

morphine...the entire bottle was less morphine than one dose in the hospital. I

was told to put it under her tongue and it actually soaks into the tissues and

never really gets swallowed, just absorbed into the body.

I do know that two nights before Mom passed away teh nurse had me put something

cooler on her and we had the sheet up with her legs showing,m and really just

over her underwear area. But...this was at our home, not at a NH where there

are a bunch of strangers around. And changing his diaper in front of everyone

(don't know if everyone was family, other patients, nurses, etc.) is not

appropriate.

If the hospice and nurses knew he was in the dying process, they should have

explained the stages and what happens at each stage. The hospice told me that

the person takes less and less respirations because the brain gets slower in

telling the lungs to breathe...and then the respirations get slower and slower

until the person passes away because the brain didn't signal another breath.

Now...I don't know if this is standard...just know it is what I was told.

Joan

>

>

> ,

>

> Thank you for your kind and loving letter. The Hospice that I had was fine

> up front, and through many visits. The trouble came a day or two before

> Don died.

> The nurse we had left them, and we were assigned a new nurse, (which was

> new to them too.). She did say she was putting morphine in his mouth every

> hour. She said it drains into the throat and sedates them so they don't feel

> pain. Yet, when I accidentally allowed too much water on the sponge, that

> I was cooling his mouth with, she fussed at me. She said he will strangle

> on it. Yet, it was no more than the morphine she was giving.

>

> She was not nice all the way around, and I wonder what care he did

> actually get.

> When I went in to see him I told him I was there to take care of him and

> would he give me his hand? He actually raised his hand and gave it to me. I

> hope and pray he didn't suffer.

>

> Is giving Morphine in the mouth the normal way for a dying person to

> receive it?

> Is it normal for the patient to get his diaper changed in front of

> everyone? Is it normal for the nurse to throw the covers back an hour before

death

> to help cool the patient?

>

> I knew the end was soon when she changed his diaper. It took a while for

> that to sink in, but after a while I realized what was going on. I trusted

> her to tell us when he was expiring. If I had had my stethoscope I could

> have known for sure that what she was doing was pure and the honest to

goodness

> truth. Her attitude caused a whole different ball game.

>

> Yes, it's the nurse, not the company, even if he or she represents them.

>

> Love a lot,

> Imogene

>

>

>

>

>

>

> In a message dated 1/26/2011 2:14:03 A.M. Central Standard Time,

> karenjo918@... writes:

>

>

> Dear Ms Imogene,

>

> You and your husband suffered so much. There were so many times I wished I

> could be there to help, but NE Arkansas is very far from you. I could pray

> and that I did and continue to do.

>

> Not all hospice companies are alike neither are all hospice nurses. I work

> with one that doesn't seem to 'get it.' I'm not the best there is, but I

> know what our philosophy is and I will do any and everything to keep my

> patients and their families from hurting, unnecessarily.

>

> I've been an RN for 27, almost 28 years. It wasn't until I joined this

> forum that I really began to understand how to deal with patients suffering

> from LBD or Alzheimer's. You all have educated me and continue to do so

> everyday. I usually print out information and take it to work to educate the

> nurses that want to know more. If it were not for this group, I wouldn't know

> how to deal with my Dad and his LBD. Never heard of the disease until he

> was diagnosed. Just thankful he had gone to a neurologist that knew and

> diagnosed him correctly.

>

> I will end this with some information regarding better care for your loved

> one who is in hospice. Call the company and ask them what their policy is

> regarding pain management and unnecessary suffering. Call the company if

> your nurse isn't giving your loved one and you the care you thought you might

> get.

>

> We don't supply sitters, but our Social Worker has been able to get people

> on Medicaid and they qualified for sitter services through them. We are

> still able to continue to visit with the sitter service. Ask questions, if

> you don't know. Keep calling until you get the answers you need. If the

> hospice company isn't supplying the care you and your loved one needs, there

is

> probably another one close by that will. I pray nightly for the people on

> this forum and our hospice families. May God bless you all. HUGS to

> everyone!

>

>

>

>

>

>

>

>

>

[Guest guest]

Dearest ,

Your letter really touched my heart. Thank you so much. I'm trying to cry,

and trying not to. You sure have helped me understand a lot. That was the

first time I was with someone dying (My special Darling on top of it) with

having Hospice too.

I was with my daddy when he died of an MI, but he didn't have hospice.

Thank you again, . So sweet of you.

I haven't been on for two days, because two of my kids are moving in with

me, and

I have been shuffling junk (everyone aught to have some Junk) as fast as I

could

so that they could put a very large work bench and cabinets in my

store room. It's close to twenty feet long. He said when they move they

will leave it here.

I don't know how long they will be here. They don't know either. She said

it depends on someone else's plans. I think it's her sister, who is here

visiting their parents, and they will all fly out to Hawaii when the sister

is ready to go. I know they want to go to Hawaii.

Precious , you have no idea how much I appreciate your understanding

and consoling letter. Thank you again.

Love a lot,

Imogene

In a message dated 1/27/2011 10:21:05 P.M. Central Standard Time,

karenjo918@... writes:

Dear Imogene,

It isn't any 'hospice policy' to change a patient in front of other

people. Nor is it correct to throw the cover off of someone who is dying, to

'cool them off.'

Liquid morphine can be given by mouth, but she shouldn't have scolded you

for keeping his mouth moist. The morphine dries out the mouth and I usually

have some wet toothettes to moisten the mouth. I have also used a moist

washcloth for the patient to suck the water out slowly. I stay with my

patient and family and tell them what to do as death gets closer.

At times, I go out into a hall and leave the family alone to tell their

loved one good bye,to hold his/her hand,tell them they love him/her.

Some nurses just don't need to be in hospice as they don't need to be in

hospitals either. You did the best you could at the time, and she will be

accountable to a much higher authority; God, at some point in time.

It hurts me to think some nurses are treating their patients and loved

ones in this fashion. My suggestion to anyone facing this situation, is to

call the hospice company. Ask for the supervisor to come out to the home and

talk to her directly, so that these things aren't allowed to continue.

I pray you will not feel guilty about anything. You loved your husband

with all you had and much more. You need to take good care of yourself after

such a long and traumatic journey.

I pray I can be as good to my patients and my Dad as you have been to your

husband. Many HUGGGSSSS!

[Guest guest]

Hello Diane,

Thank you very much for your understanding and empathy with love.

You are right. I don't think the nurse should be there. When things settle

down here at home, I may just have another conversation to the supervisor.

Thank you again dear Diane,

Love a lot,

Imogene

In a message dated 1/31/2011 1:35:15 P.M. Central Standard Time,

dianecarbo@... writes:

Dear Imogene,

I have been a nurse for 37 years, and I am in total agreement with .

In fact I will take it one step further, there are just some people that

should not be in nursing.

It is so sad that you had an unpleasant experience with hospice. It should

not happen. There are no rules like that. This nurse and her comments

should have been reported to the hospice company.

I hope you will follow up with this and speak to the supervisor of the

nurses so that others will not experience this.

Diane Carbo

www.aginghomehealthcare.com

www.dementiacaresecrets.com