Hospice

[Guest guest]

Hi,

 

I am a nurse in hospice and my Dad also has LBD. What hospice is looking for are

things such as: inability to walk, falls, incontinence either intermittently or

all the time, loss of weight, inability to speak more than 6 words during an

interview or to carry on an intelligent conversation. There are lab values they

look at also, such as hemoglobin and hematocrit,albumin,etc. Does she have

difficulty swallowing? Repeating words over and over? Need assistance with

bathing, dressing, eating,toileting? Agitation? It's a matter of words really.

You could meet with the hospice nurse and discuss all the things you have seen

with her, then the nurse could do an assessment on her without her having to

know anything. Most of the time, I time my patients, I am here because their

doctor wanted me to check her/his blood pressure, temperature, etc. They usually

don't mind that. I'm surprised they wouldn't take her for the first 90 days

anyway if she met the primary

criteria. Best of luck in the future.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Subject: Hospice

To: LBDcaregivers

Date: Wednesday, March 30, 2011, 6:50 AM

 

Can anyone tell me something about the " approval " process for getting hospice

involved in care? About eight months ago my mother's cardiologist and

neurologist referred her to hospice due to uncontrollable swings in blood

pressure, and hospice came to evaluate, but felt that she was not within their

12 month life expectancy parameter for inclusion at that time. The process of

evaluation was very stressful for all of us, and although I don't think Mom was

fully aware of the implications, she doesn't like strangers in her space, asking

her questions, asking her to move about, etc. Since that time hospice has been

in touch to find out how things are going and they feel that re-evaluation would

be appropriate now. However, it was difficult enough to go through the first

time that I want to delay until I feel relatively certain that my mother is

declining rapidly and irreversibly. She still has very good days where she can

walk and talks lucidly interspersed

amongst the days that she can't walk at all and only mutters or is

uncommunicative. At this point she needs a full time caregiver to help her do

everything, so the hospice care would be a big financial help, but when I ask

her neurologist about this she punts and says she doesn't know much about the

hospice process. I was surprised by some of the questions that hospice asked

over the phone to evaluate her condition. Incontinence of the bowel was one (she

is occasionally, but not always), weight loss, and the ability to sit unassisted

on the side of the bed. This last I found very surprising as we hadn't focused

on her falling backwards when left sitting for any length of time. Does anyone

know what this is a sign of? The hospice rep also said that given Mom's various

diagnoses (Lewy's Bodies, MSA, Parkinson's Plus) that they might find that she

is declining more rapidly and thus could be covered earlier than another patient

showing similar symptoms that

has only been diagnosed with Alzheimers, for instance. Can anyone give me any

feedback on all of this?

[Guest guest]

Hospice Criteria can be found here:

http://health.groups.yahoo.com/group/LBDcaregivers/files/

not in a folder - scroll towards the end to find

List of Hospice Criteria

>

> Can anyone tell me something about the " approval " process for getting hospice

involved in care? About eight months ago my mother's cardiologist and

neurologist referred her to hospice due to uncontrollable swings in blood

pressure, and hospice came to evaluate, but felt that she was not within their

12 month life expectancy parameter for inclusion at that time. The process of

evaluation was very stressful for all of us, and although I don't think Mom was

fully aware of the implications, she doesn't like strangers in her space, asking

her questions, asking her to move about, etc. Since that time hospice has been

in touch to find out how things are going and they feel that re-evaluation would

be appropriate now. However, it was difficult enough to go through the first

time that I want to delay until I feel relatively certain that my mother is

declining rapidly and irreversibly. She still has very good days where she can

walk and talks lucidly interspersed amongst the days that she can't walk at all

and only mutters or is uncommunicative. At this point she needs a full time

caregiver to help her do everything, so the hospice care would be a big

financial help, but when I ask her neurologist about this she punts and says she

doesn't know much about the hospice process. I was surprised by some of the

questions that hospice asked over the phone to evaluate her condition.

Incontinence of the bowel was one (she is occasionally, but not always), weight

loss, and the ability to sit unassisted on the side of the bed. This last I

found very surprising as we hadn't focused on her falling backwards when left

sitting for any length of time. Does anyone know what this is a sign of? The

hospice rep also said that given Mom's various diagnoses (Lewy's Bodies, MSA,

Parkinson's Plus) that they might find that she is declining more rapidly and

thus could be covered earlier than another patient showing similar symptoms that

has only been diagnosed with Alzheimers, for instance. Can anyone give me any

feedback on all of this?

>

[Guest guest]

Mom has been on Hospice for just over a year. Yesterday the Social Worker called

and told us they are dropping her November 1. Now what are we to do? Can they do

that?

[Guest guest]

My mom also was discharged from hospice in Aug after one year in the program. 

The most difficut we have without hospice is that we no longer have regular

nurse visit also lost some home aid hours hospice provide. Mom was put on

Paliative care program now, I was told if anything getting worse notify

palative nurse and social work to see whether she can be recertified.

 

- Min

 

________________________________

To: LBDcaregivers

Sent: Thursday, October 20, 2011 11:14 AM

Subject: Re: Hospice

 

> Mom has been on Hospice for just over a year. Yesterday the Social Worker

> called and told us they are dropping her November 1. Now what are we to do?

> Can they do that?

>

Yes they can, and, unfortunately, under the rules for Medicare

reimbursement, they are probably required to drop her unless there's an

obvious and recent decline. I went through the same thing a bit over year

ago with my Dad, and I was completely terrified. We had a very caring

hospice group and they didn't want to decertify Dad, but if they weren't

going to be paid .... Both the regular nurse and the doctor we worked with

told me very carefully that I should call them if anything changed.

Carefully, because they doubted my ability to absorb information while

trying to imagine how I would deal with his next health problem. Dad was

by then unable to communicate at all and unable or unwilling to assist in

standing, walking, etc. About four months later he had a seizure, from

which he recovered on his own after a few minutes. He was recertified for

hospice that afternoon.

Any health problem your mother develops will probably allow hospice to

recertify her.

Best regards,

Ann

[Guest guest]

Dorothy,

It is my understanding that Hospice will not provide or prescribe

antibiotics ever. They only will provide pain control medicines or

psychiatric meds for COMFORT ONLY. They believe in letting nature take its

course when death is inevitable anyway. They do not consider UTI's

something worth treating, it is the means to the ultimate end- death. They

would not give antibiotics for pneumonia or ANY infection, as in their

estimation that would only be prolonging the suffering. It sounds to me

like you need to rethink using Hospice as their goal is only to ease the

DYING process. When you sign up for Hospice you are accepting the fact

that your LO is actively in the DYING process.

It sounds like you are not ready to admit that.

Good Luck,

Pat M.

58, wife/caregiver of Bob, 75 dx PD 2003, LBD 2009

> **

>

>

> My mil has been declining steadily but in other ways not so much. For

> awhile it seemed parkinsons and lbd were in a neck and neck race to the

> end.

> Then LBD took over much more.

>

> She has trouble swallowing pureed food now and thickened water. It gets

> caught in her throat and there is a lot of coughing and retching to get it

> out. She thinks she's swallowing but somehow it's not working. We

> decided to get her signed up with hospice now and see if that would be any

> help. We signed her up Friday. They said they had local people and worked

> with local hospital and gave every indication of being available if and

> when

> needed.

>

> She had been on ampicillion for a uti for a week when we signed her up with

> the hospice on Friday. The antibiotic seemed to be working and she seemed

> well enough considering. Saturday though her urine smelled real strong and

> she was a little cranky. Sunday she was extremely cranky and complaining of

> a lot of pain in the areas that she has pain when she has a big uti. So I

> called the hospice to ask for some help - a ua collected and some

> antibiotics to tide her over. I was told to give her morphine for the pain

> (which I could not because I have no idea what her reaction to it will be

> and didn't want to try and see without someone else here). I decided she

> was in enough distress and her temp told me she had a raging uti, resistant

> obviously to the antibiotic. For us that means trying to get a UA done and

> also a shot of rocephin to knock it back while the oral meds reach peak

> levels. The hospice didn't have anyone available, it was Sunday. So I

> told them I would elect to take her to the ER where I knew they would do

> this. I got a lot of flack about not allowing nature to take it's course.

> I told them I had to do my best and to let this go seemed negligent to me.

> They said I would have to sign a revocation form and I said that's fine, I

> can see I really have no choice. The would not have someone out to the

> house until Monday or Tuesday.

>

> So we got my mil to the ER and I signed the revocation form and my mil had

> a

> very bad uti and they gave her a shot of receipin and sent us on our way.

> Pretty simple I thought. I also thought we asked this hospice provider all

> these questions before and were told yes this would all be fine. But It

> turns out it isn't so fine afterall. I'm going to sign her up with another

> hospice provider tomorrow who says they will not have these shortcomings

> and

> I hope it's true. I just can't see dealing with this 9-5 M-F only. This

> means my husband would NOT have the benefit of sitting down with a social

> worker and his mom to talk over some things (needed) and other supportive

> things. So I need to find a provider that is a little better on the hours

> of availability.

>

> Dorothy

>

>