Re: Hospice

[Guest guest]

Hi Sheila. Robin had good advice - I'd say that would be something

you should try re: hospice. When my mom was accepted by hospice I was

actually a little shocked - then I was afraid w/ her 'showtime' that

they'd kick her out... I took the opportunity to explain LBD and give

them brochures, etc. I wanted them to know that things fluctuate and

to understand that it's part of the disease and she didn't suddenly

become cured...

A couple things that might be useful to you... in the files section:

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

There's a document re: Hospice - scroll down to this:

hospcie_1_.pdf

List of Hospice Criteria

And also in the files section there's a list of phases of LBD. It was

put together by caregivers (not doctors) by their observations, but

it can be quite useful so you know what you can expect...

Go into the folder:

LBD Phases

List of Phases put together by the LBD Caring Spouses Group

Hope you find the above useful.

Is your mom on any medications that help those w/ LBD? Do you need to

get a Lewy-savvy doctor? I looked back and see that you're in SC -

here are the doctors & facilities that know about LBD in SC:

Senior Primary Care Practice – Parkridge

The Memory Care Clinic, 190 Parkridge Drive, Suite G-100

Columbia, SC 29212

http://www.palmettohealth.org/body.cfm?id=1289

The South Carolina Neurological Clinic, PA

1333 Street, Suite 1C

Columbia, SC 29202

Fax:

http://www.scneuroclinic.com/

The South Carolina Neurological Clinic, PA

110 East Medical Lane, Suite 130

West Columbia, SC 29169

Fax:

http://www.scneuroclinic.com/

Neurological Institute of Savannah

Harvinder Kohli, MD

8 Hospital Center Blvd., Suite 110

Hilton Head, SC 29926

Fax:

http://www.neurologicalinstitute.com/e_parkin.html

Are you near Greenville, SC at all? There's a LBD caregiver in

Greenville, SC that is looking to connect w/ other caregivers. I've

called her and given her info (there's a SC support group - see

below) but if you're close to Greenville and your previous post

mentioned that you wanted to connect w/ others I can give you her

phone number (she's not on the computer) - maybe even a SC phone

buddy system? Let me know if you're interested...

Here's the SC support group:

South Carolina

Golden Corner Lewy Body Dementia Support Group

When: Last Monday of each month, 7:00 p.m. - 8:30 p.m. beginning

April 28, 2008.

Where: Benton Village Retirement Community, 515 Benton Street,

Seneca, SC 29672.

Who: Caregivers and health care professionals.

Contact: Debbie Malone (bvseneca@...)

PS - just looked, there's another member in SC - in the Files

section, go to the folder marked:

LBD Caregiver Locations

List of caregivers from this board and their locations

>

> My mom is doing worse. the Dr. suggested Hospice. They came to

> evaluate her and they said that since she could speak and

understood

> what we were saying she probably wouldn't qualify. I don't

understand,

> she can not walk without assistance, she can't do anything without

> assistance, Her tremors are so bad she can't eat or brush her

teeth.

> She is delusional, thinks dad is trying to hurt her, and she get

upset

> if I'm not there.

> Has anyone else had problems with people not understanding about

LBD?

> They think it is like Alzhiemers, with the memory problems, mom

> doesn't have that problem, but her symptoms are just as bad. It

gets

> so frustrating. I don't know what to do. I would also like to

know

> what to expect. All the DR's say is that there is no cure and she

will

> go down hill fast. I feel like no one understands what I am going

> thru. I'm worried I can't do it but I have to because there is no

one

> else except Dad and he is not well either.

> thanks for listening!

> Sheila

>

[Guest guest]

HI Sheila,

Is it possible to have some in-home caregivers come around to help you out? How

about visiting nurses who can help you out? I'm hoping my American friends can

help you reach out to the various services in your area that can help you.

Courage

Hospice

My mom is doing worse. the Dr. suggested Hospice. They came to

evaluate her and they said that since she could speak and understood

what we were saying she probably wouldn't qualify. I don't understand,

she can not walk without assistance, she can't do anything without

assistance, Her tremors are so bad she can't eat or brush her teeth.

She is delusional, thinks dad is trying to hurt her, and she get upset

if I'm not there.

Has anyone else had problems with people not understanding about LBD?

They think it is like Alzhiemers, with the memory problems, mom

doesn't have that problem, but her symptoms are just as bad. It gets

so frustrating. I don't know what to do. I would also like to know

what to expect. All the DR's say is that there is no cure and she will

go down hill fast. I feel like no one understands what I am going

thru. I'm worried I can't do it but I have to because there is no one

else except Dad and he is not well either.

thanks for listening!

Sheila

[Guest guest]

Dear Sheila,

Do you live in the states? If so, where?  Hospice is for people with illnesses

that cannot be cured. LBDers absolutely qualify. If you have a choice of hospice

agencies, take a bit of time and make some calls. We use several hospice

services where I work and where my mom lives (senior care center): people can

actually be on hospice for years. It's not just for those who are " actively

dying right this minute. " It sounds as if you got connected to a group who don't

actually understand or practice hospice. If you let me know where your mom is

located, I can likely give you a list of agencies. (I'm curious: if the doctor

wrote an order for hospice - which is how people get on the service - then he

should already know what agency he wants your mom to use.)

 

And you sure want an agency whose staff understand the difference between AD and

LBD. What meds is your mom on? You know that the ones that work for AD are not

all the same for LBD: in fact, some meds can harm our loved ones.  It should be

possible to help ease her fearfulness and delusional thinking.

 

It's true LBD is not curable. It is not true that the decline is necessarily

rapid. Many of us here have cared for loved ones with LBD for years. My mom was

diagnosed 6 years ago, but certainly has had LBD for more like 8. It is a

serious disease, Sheila, but there are meds and other treatments that can help.

Our loved ones don't need to suffer as it seems your mom is. What is the MD

actively doing to treat her?

 

Please stay in touch and we'll be as much help as we can. This site is filled

with wise and caring folks. You, your mom and your dad are in my prayers.

 

Lin

 

 

 

Subject: Re: Hospice

To: LBDcaregivers

Date: Friday, August 8, 2008, 8:44 PM

HI Sheila,

Is it possible to have some in-home caregivers come around to help you out?

How about visiting nurses who can help you out? I'm hoping my American

friends can help you reach out to the various services in your area that can

help you.

Courage

Hospice

My mom is doing worse. the Dr. suggested Hospice. They came to

evaluate her and they said that since she could speak and understood

what we were saying she probably wouldn't qualify. I don't

understand,

she can not walk without assistance, she can't do anything without

assistance, Her tremors are so bad she can't eat or brush her teeth.

She is delusional, thinks dad is trying to hurt her, and she get upset

if I'm not there.

Has anyone else had problems with people not understanding about LBD?

They think it is like Alzhiemers, with the memory problems, mom

doesn't have that problem, but her symptoms are just as bad. It gets

so frustrating. I don't know what to do. I would also like to know

what to expect. All the DR's say is that there is no cure and she will

go down hill fast. I feel like no one understands what I am going

thru. I'm worried I can't do it but I have to because there is no one

else except Dad and he is not well either.

thanks for listening!

Sheila