Re: My Mom's patch for pain

[Guest guest]

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]

Thank you, Dorothy, for your support. I do not exaggerate when I say it

was a terrible journey.

Listen up everyone, When you see these same things being done to your

loved one stand up and demand, " Nothing Doing. " Tell them, " You will do it my

way or not at all. I have the POA. " So many things smacked me in the face

that I had to remove Don from four NH, and then the fifth NH let him die in ten

days.

Changing an LBD patient from one NH to another is extremely hard on the

patient.

I didn't have the strength to care for him all the time. My doctor was

very worried about me, because I am elderly with big health issues of my own.

By the Grace of God we got through it while including some sense of humor

once in a while. Also, Don and I had a love affair that never ended. I

don't mean sex, but love. We were in each others arms several times a day. We

were married forty wonderful years. Jan has the same kind of deep love. We

understand it well.

Love covers a lot of bad times.

I can't stress " Love a Lot " enough,

Imogene

In a message dated 1/25/2011 10:33:05 P.M. Central Standard Time,

fullcircle@... writes:

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

[Non-text portions of this message have been removed]

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Welcome to LBDcaregivers.

[Guest guest]

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

>

>

> 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!

>

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