Re: Re: Where is everyone? donna

[Guest guest]

laughing,  oh yeah we ahve warm weather today, high of 46 maybe  curretnly 37

with windchill 27degrees. and going to be like this all week. we are supposed to

go to fleamarket   it wilb e soooo cold,  maybe going to be 34 degrees high 

brrrrr, i t would have to do this coldspell the last weekend before

christmas.   brrrrrr hugs. sharon m

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Subject: Re: Where is everyone?

To: LBDcaregivers

Date: Monday, December 13, 2010, 10:15 AM

 

I read my digested mail from LBD caregivers every day it comes in. Now that

I am no longer taking care of an LBD patient, I respond when I can give some

advice to someone else who is on the active " Lewy Roller Coaster " and

support when someone is having a terrible time. If I can help someone, I am

happy to do that. Otherwise, I am here in Upstate NY (Tug Hill Region where

snow abounds this time of year) getting prepared for Christmas celebrations.

I wish you all Merry Christmas and a Happy New Year. If you don't celebrate

the religious aspects, I hope the season is still a peaceful, memorable time

for you and yours. Leona

Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing

Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have

ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in

Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14,

2009. I am handling it OK.

'Love is not finding someone to live with; it's finding someone you don't

want to live without.'

[Guest guest]

That is really cold for down that way. But we are at 11 degree with a wind

chill at -6. And the snow that we got yesterday, is frozen solid.

Does it always get that cold in Dec. down by you?

Hope you get your balance and you might want to try one of the new bracelets

that help with balance. Have you seen them?

Take care.

Hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

Re: Where is everyone?

To: LBDcaregivers

Date: Monday, December 13, 2010, 10:15 AM

 

I read my digested mail from LBD caregivers every day it comes in. Now that

I am no longer taking care of an LBD patient, I respond when I can give some

advice to someone else who is on the active " Lewy Roller Coaster " and

support when someone is having a terrible time. If I can help someone, I am

happy to do that. Otherwise, I am here in Upstate NY (Tug Hill Region where

snow abounds this time of year) getting prepared for Christmas celebrations.

I wish you all Merry Christmas and a Happy New Year. If you don't celebrate

the religious aspects, I hope the season is still a peaceful, memorable time

for you and yours. Leona

Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing

Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have

ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in

Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14,

2009. I am handling it OK.

'Love is not finding someone to live with; it's finding someone you don't

want to live without.'

[Guest guest]

Definitely cold in Florida with those temps. We are with you, Donna. I woke up

this morning to 0 with windchill at -20. Warmer now though with current

temperature at 9 with windchill of 2. Supposed to get down to 1 actual

temperature tonight. Winds are going to calm which will really help and a high

expected of 20. Woohoo!! Sandie

Des Moines, IA

dad, Merle, passed from LBD 9-20-02 age 65

mum, Jo, (New Zealand) passed from LBD 4-29-07 age 78

----- Re: Where is everyone?

To: LBDcaregivers

Date: Monday, December 13, 2010, 10:15 AM

I read my digested mail from LBD caregivers every day it comes in. Now that

I am no longer taking care of an LBD patient, I respond when I can give some

advice to someone else who is on the active " Lewy Roller Coaster " and

support when someone is having a terrible time. If I can help someone, I am

happy to do that. Otherwise, I am here in Upstate NY (Tug Hill Region where

snow abounds this time of year) getting prepared for Christmas celebrations.

I wish you all Merry Christmas and a Happy New Year. If you don't celebrate

the religious aspects, I hope the season is still a peaceful, memorable time

for you and yours. Leona

Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing

Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have

ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in

Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14,

2009. I am handling it OK.

'Love is not finding someone to live with; it's finding someone you don't

want to live without.'

[Guest guest]

hi ladies,

 

donna, in jan/feb is usually our coldmonths with temps down in 30's  but rarely

below freezing,  we havent had the gas turned on in our house for over 4 years,

cause usually just runing a small electirc heater will warm us enough and oly

run it when we are showering or getting ready to go to sleep..  last year in

dec we had a 3 weeks of hard freezes.  this year  we havent had that yet, but

i think it is worse              for 2-3 days of the week we are in

teh 20's at nite and then the rest of hte week we are in the 50-s at nite. so

this has been unusual, we are atually talking about turning the gas back on but

i no longer have a gas stove, or dryer, or water heater so i hate to turn it on

for 2-3 months and then turn off, during spring summer fall, etc.  so it is

hard to decide whether to turn it on at all,

 

i moved here wanting wramer winters, and seems like i have gotten it as compared

to nashville which is having its 4 snow already adn nashville usually only gets

ice not snow,  but i wish it was a little warmer,  when donnie and i went to

walt disney world in 2005 for our 1 years annive/belated honey moon orlanda had

the record breakng cold days then  brrrrrr  zseems like i cant get away from

teh cold hehehehehe.  take care all and hugs. 

 

what is everyone doing for christmas>???

Subject: Re: Where is everyone?

To: LBDcaregivers

Date: Monday, December 13, 2010, 10:15 AM

I read my digested mail from LBD caregivers every day it comes in. Now that

I am no longer taking care of an LBD patient, I respond when I can give some

advice to someone else who is on the active " Lewy Roller Coaster " and

support when someone is having a terrible time. If I can help someone, I am

happy to do that. Otherwise, I am here in Upstate NY (Tug Hill Region where

snow abounds this time of year) getting prepared for Christmas celebrations.

I wish you all Merry Christmas and a Happy New Year. If you don't celebrate

the religious aspects, I hope the season is still a peaceful, memorable time

for you and yours. Leona

Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing

Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have

ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in

Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14,

2009. I am handling it OK.

'Love is not finding someone to live with; it's finding someone you don't

want to live without.'

------------------------------------

Welcome to LBDcaregivers.

[Guest guest]

Hello to all the LBD group:

Sounds like it's cold, cold, cold everywhere.  It was a - 0 something windchill

here in Dayton OH this morning, and the wind was high with 30 mph gusts all day

and bitter cold, I barely stuck my nose out the door to get the mail this

afternoon and stayed in and baked cookies.  We got about 2 - 3 " of snow

yesterday and it was also frozen solid by this morning, and there were lots of

school closings and delays.  Brrrr.  It was about 28 degrees here last Friday

& that felt like a heat wave compared to this.

I just wanted to wish everyone in this group a peaceful, happy holiday season. I

know how difficult it can be when you are caring for a loved one with LBD.   I

can relate so much to Dorothy as my Mother used to keep me awake night after

night calling me, and trying to get out of bed  and talking to herself and

having angry outbursts, and hallucinations and on and on and even falling many

times, but she has been in a memory care unit in a wonderful care center for a

little over a year now & her behavior is probably 99% better than it was a year

ago before all her meds finally got adjusted and after a stay in a mental health

unit in a hospital just before Christmas last year due to hear threatening to

kill herself all the time so the care center sent her to the hospital.  She is

almost like a different person now except that she still begs to come home, and

says that when she gets out of where she is she is going to get an apt. and a

car and a driver's

license because she is a good driver.  She was diagnosed with LBD a year ago

last Sept and went to the care center last Nov.but we knew something was

terribly wrong for at least two or three years before we placed her in the

center.  So many of her symptoms are under control now including the awful

hallucinations she used to have and now rarely has.  Her short term memory is

completely gone, and she no longer seems to have the passing out spells or the

Parkinson-like tremors.  Sometimes she will ask me how old I am and I tell her

I'm 67, she'll say " NO YOUR NOT " and when I ask her how old she thinks I am,

she'll say 47, and I'll say that sounds good to me. :-)

It took a lot of time to find the right place for her, and to go through all

that Medicaid requires in order for them to help pay for her care, but I am so

glad my brother and I made the decision, we have been so pleased with her care

at this care center, and the staff for the most part is wonderful.  While she

doesn't remember living with me for the five years I had her with me, she does

remember living in FL where she lived with my step-father for over 30 yrs.

 It's sad to see her when she starts asking for him (he died 5 yrs ago, or for

her parents who have been gone for over 30 yrs.), but she is in a safe, caring

enviornment and while I still wish I could bring her back to live with me, I

know physically it is not possible as I can no longer lift her and she requires

almost total assists for getting to and from her chair, wheelchair, bed or the

toilet.  I think she is on 250 mg. of Seroquel now plus several other

medications and I think that has

made a huge difference in how she is doing.  

Anyway I wish everyone well who is on this journey with all of it's roller

coaster days, and hope that everyone can get the help that you need.  I

remember how exhausted and frustrated and sad and scared, and even sometimes

angry I was and how thrilled I was then I found this group.  And while I have

mostly been a lurker, I can't tell you enough how much I appreciate everyone who

has shared their thoughts, their knowledge, their pain, their frustration, their

sadness and their love and their caring.  This is  just a wonderful amazing

group of people both the long time members and the new and I wish you all the

very best in 2011.

Patti, dtr of Pat age 96, diagnosed with LBD, Sept. 2009

Subject: Re: Where is everyone?

To: LBDcaregivers

Date: Monday, December 13, 2010, 10:15 AM

 

I read my digested mail from LBD caregivers every day it comes in. Now that

I am no longer taking care of an LBD patient, I respond when I can give some

advice to someone else who is on the active " Lewy Roller Coaster " and

support when someone is having a terrible time. If I can help someone, I am

happy to do that. Otherwise, I am here in Upstate NY (Tug Hill Region where

snow abounds this time of year) getting prepared for Christmas celebrations.

I wish you all Merry Christmas and a Happy New Year. If you don't celebrate

the religious aspects, I hope the season is still a peaceful, memorable time

for you and yours. Leona

Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing

Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have

ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in

Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14,

2009. I am handling it OK.

'Love is not finding someone to live with; it's finding someone you don't

want to live without.'

[Guest guest]

Patti,

So glad your Mom is doing better. My Mom did better at the NH too and I think

the consistency of them all doing things at the same time helped her a lot.

Yes, we are freezing too. And I shoveled 3 times yesterday and " raked " the roof

today. Took some of the snow off the roof, but it was frozen on in most places.

Hope you have a good year also. Merry Christmas!

Hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

Re: Where is everyone?

To: LBDcaregivers

Date: Monday, December 13, 2010, 10:15 AM

 

I read my digested mail from LBD caregivers every day it comes in. Now that

I am no longer taking care of an LBD patient, I respond when I can give some

advice to someone else who is on the active " Lewy Roller Coaster " and

support when someone is having a terrible time. If I can help someone, I am

happy to do that. Otherwise, I am here in Upstate NY (Tug Hill Region where

snow abounds this time of year) getting prepared for Christmas celebrations.

I wish you all Merry Christmas and a Happy New Year. If you don't celebrate

the religious aspects, I hope the season is still a peaceful, memorable time

for you and yours. Leona

Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing

Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have

ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in

Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14,

2009. I am handling it OK.

'Love is not finding someone to live with; it's finding someone you don't

want to live without.'