New member

[Guest guest]

Dear Pam,

I am so sorry to hear about your Dad. He was so young (as are you and your

Mom) to have to go through so much of this. I can't imagine how hard it is

for you to concentrate on school and to catch up! Please know that we here

will all help you dxeal with this as best we can. If you feel like talking

by phone, please let me know.

With sympathy, Norma

New Member

On August 20th, my 67 year old father passed away after fighting with

Lewy Body DIsease for over 6 years. Although we knew what was coming

and that in the end LBD was terminal, Dad's death came really

quickly. In May he was his normal " Lewy Body " self and by June 16th

we were admitting him to Hospice. The past three months just seem

like a blur to me. I am only 24 years old and an only child, so the

majority of Dad's care was provided by my mom and I. Although I

thought I had prepared myself for his death, the past month has been

hell. I do ok for the most part during the days, but I am crying

myself to sleep every night. I am mad and angry and sad all at

once. Being in the healthcare business, I know that these are the

stages of grief, but I just don't like it I guess. I am tierd of

pretending I am ok. I am a full time college student and Dad died on

the first day of classes for the fall semester. I didn't go back to

class for two weeks, but I still feel like I haven't delt with it and

that I can't. I feel like I don't have time to deal with it. Is it

ever going to get better?

Sorry I rambled on and on.

Missing Daddy,

Pam

[Guest guest]

Pam.

Condolences to you and your Mom. Grief is one of the feelings we probably have

a harder time tucking away for a while and working at a little at a time. There

are several places for you to go talk about it. Lots of churches have grief

groups, funeral homes have grief groups these days, and I bet you might find one

at school. I went to as many 6 week groups as I needed to when Mom died. And

come here as often as you like during the day or night there is usually someone

here.

Your Dad is still there right with you as many others have already talked about

to you in their email. You just need to be ready to feel him. Listen for a

song, feel the wind, let yourself cry. It is a good thing to grieve. Mostly we

don't like feeling so intensely. It will get better.

My best thoughts coming your way and lots of hugs.

Donna R

..

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

New Member

On August 20th, my 67 year old father passed away after fighting with

Lewy Body DIsease for over 6 years. Although we knew what was coming

and that in the end LBD was terminal, Dad's death came really

quickly. In May he was his normal " Lewy Body " self and by June 16th

we were admitting him to Hospice. The past three months just seem

like a blur to me. I am only 24 years old and an only child, so the

majority of Dad's care was provided by my mom and I. Although I

thought I had prepared myself for his death, the past month has been

hell. I do ok for the most part during the days, but I am crying

myself to sleep every night. I am mad and angry and sad all at

once. Being in the healthcare business, I know that these are the

stages of grief, but I just don't like it I guess. I am tierd of

pretending I am ok. I am a full time college student and Dad died on

the first day of classes for the fall semester. I didn't go back to

class for two weeks, but I still feel like I haven't delt with it and

that I can't. I feel like I don't have time to deal with it. Is it

ever going to get better?

Sorry I rambled on and on.

Missing Daddy,

Pam

[Guest guest]

Pam, First if I may Id just want to offer my deepest condolences to you and your

family.When we lost my dad in 05 I was a wreck.I remember not eating or sleeping

for days and days and all the stages and I wondered if Id even be able to go

on.I couldnt focus at work or do any functions of my life for several weeks.I

remember seeking help from many different sources and many nights spending

talking to God and Dad and wondering if any of it was being heard.

Reach out to whom ever you feel close to...Talk about your feelings and bring

them out.And although you will always miss him and think of him there will be a

day where you can look back and cherish the special times with him without

feeling so empty and hurt.My thoughts and prayers are with you and your

family.God Bless, Ron

Donna Mido wrote:

Pam.

Condolences to you and your Mom. Grief is one of the feelings we probably have a

harder time tucking away for a while and working at a little at a time. There

are several places for you to go talk about it. Lots of churches have grief

groups, funeral homes have grief groups these days, and I bet you might find one

at school. I went to as many 6 week groups as I needed to when Mom died. And

come here as often as you like during the day or night there is usually someone

here.

Your Dad is still there right with you as many others have already talked about

to you in their email. You just need to be ready to feel him. Listen for a song,

feel the wind, let yourself cry. It is a good thing to grieve. Mostly we don't

like feeling so intensely. It will get better.

My best thoughts coming your way and lots of hugs.

Donna R

...

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

New Member

On August 20th, my 67 year old father passed away after fighting with

Lewy Body DIsease for over 6 years. Although we knew what was coming

and that in the end LBD was terminal, Dad's death came really

quickly. In May he was his normal " Lewy Body " self and by June 16th

we were admitting him to Hospice. The past three months just seem

like a blur to me. I am only 24 years old and an only child, so the

majority of Dad's care was provided by my mom and I. Although I

thought I had prepared myself for his death, the past month has been

hell. I do ok for the most part during the days, but I am crying

myself to sleep every night. I am mad and angry and sad all at

once. Being in the healthcare business, I know that these are the

stages of grief, but I just don't like it I guess. I am tierd of

pretending I am ok. I am a full time college student and Dad died on

the first day of classes for the fall semester. I didn't go back to

class for two weeks, but I still feel like I haven't delt with it and

that I can't. I feel like I don't have time to deal with it. Is it

ever going to get better?

Sorry I rambled on and on.

Missing Daddy,

Pam

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

Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and

lay it on us.

[Guest guest]

Condolences on the loss of your father at a very young

age. My father died at 68 about 40 years ago, but at

that time, 68 wasn't considered young.

It will get easier, but allow your grief to happen and

not try to suppress it. Life will come back, perhaps

in a different way.

June (Husband Darrell dx'd AD 1999; probable LBD 2006,

died Nov. 2006; autopsy showed AD/LBD both.

--- charliebrown2424

wrote:

> On August 20th, my 67 year old father passed away

> after fighting with

> Lewy Body DIsease for over 6 years. Although we knew

> what was coming

> and that in the end LBD was terminal, Dad's death

> came really

> quickly. In May he was his normal " Lewy Body " self

> and by June 16th

> we were admitting him to Hospice. The past three

> months just seem

> like a blur to me. I am only 24 years old and an

> only child, so the

> majority of Dad's care was provided by my mom and I.

> Although I

> thought I had prepared myself for his death, the

> past month has been

> hell. I do ok for the most part during the days,

> but I am crying

> myself to sleep every night. I am mad and angry and

> sad all at

> once. Being in the healthcare business, I know that

> these are the

> stages of grief, but I just don't like it I guess.

> I am tierd of

> pretending I am ok. I am a full time college

> student and Dad died on

> the first day of classes for the fall semester. I

> didn't go back to

> class for two weeks, but I still feel like I haven't

> delt with it and

> that I can't. I feel like I don't have time to deal

> with it. Is it

> ever going to get better?

>

> Sorry I rambled on and on.

>

> Missing Daddy,

> Pam

>

>

________________________________________________________________________________\

____

Be a better Globetrotter. Get better travel answers from someone who knows.

Yahoo! Answers - Check it out.

http://answers.yahoo.com/dir/?link=list & sid=396545469

[Guest guest]

Hi, Leona!

I'm fairly new to this list as well. I've been here for a couple months but

have only very recently become active. You'll find MUCH help, support, and

understanding here.

Your story is all too familiar. Many of us also received the PD diagnosis

before LBD. Actually, my mother's doctor still hasn't written LBD down on

paper for us even though he agrees that she " probably " has it. He insists

that a definitive diagnosis can't be made until a post mortem autopsy is

done which my mother doesn't want so there will never be a 100% definitive

diagnosis in her case.

We stumbled across the knowledge of this disease by accident. My sister was

having lunch at a business meeting with a woman she didn't even know. They

got chatting about families and the woman described her father's LBD when my

sister said she had never heard of it. She called me that night and said

Glad, I know what's wrong with Mom. "

Now, that I've researched it, we are 100% sure that she has LBD. It is sad

because we know it will only get worse, but at least we now know what we are

dealing with and won't make any of the horrible mistakes with medication

that we made in the past.

We are currently putting an addition on our house which I hope will be done

in about three weeks so we can try our hardest to keep Mom out of a nursing

home if at all possible. Her father suffered from some kind of dementia and

she is the only one his seven children to follow in his footsteps. It was

her biggest fear. Ironically, she was an exercise addict her whole life and

watched every single bite she put in her mouth, seeking out and eating only

healthy foods. What she has done is guaranteed that her body may far

outlive her mind. My heart breaks for her.

As you said about your husband, I told my husband last night that my mother

is gone and I miss her terribly. Her body is here and there is some spacey

stranger in it who sees people I can not see. On the flip side, there are

things about this new lady that I like a lot. My mother came from a very

straight laced old fashioned British family. They never hugged or showed

much emotion. This new lady gives me hugs daily! LOL I waited 53 years

for this and it was worth the wait! LOL

On the other hand, I can't turn to her for the advice or comfort that my

mother used to give me. She doesn't enjoy sharing memories with me. When I

take pictures of my mother's great grandchildren to her house, this lady

thinks they are cute but doesn't have a clue who they are.

I'm learning to cherish the moments that make us both smile as beautiful and

rare gifts. I'm struggling and fighting not to tell her that the people she

sees are not there because I know it will devastate her.

Anyway, I'm writing far more than I intended to. I just wanted to let you

know that you are in the right place and that I'm happy you are here and

that we all " get it " .

Gladys

Caregiver to Mom, Grace

-- new member

My name is Leona (age 63) and I am primary caregiver for my husband, Ray

(age 65), and we are both suffering from LBD--he has it and suffers, I

suffer because he has it. We take things one hour or so at a time. I just

found this " list " but have belonged to the Yahoo Caregivers support group

for quite a while. Ray was diagnosed in Feb. of 2004 with Parkinson's

disease and was treated by a local neurologist for 1 1/2 years for that

disease. After getting up to 7 medications and no improvements and a

continual decline, I found a Parkinson's Center in Syracuse, NY (about 60

miles away) and took Ray there. On our first visit with Dr. Dragos Mihailya,

he told us that Ray's problem was probably Diffuse Lewy Body Dementia. He

removed several of the meds he was taking and changed some. We still don't

see any improvement and a continual decline but now we know why. I knew some

about Parkinson's disease because my mother had it for 2 years before she

passed away.

My caregiving duties are very difficult for me. I never wanted to be a

nurse, or a maid, or a cleaning lady. I retired earlier than I had planned

to from my job as a school librarian to become a caregiver, nurse, maid and

cleaning lady. My girlfriend said early on " well, at least you still have

your husband " . No, actually I do not. He is gone. The man I care for is no

longer my lover, my provider, my helper, not even a very satisfatory friend

anymore.

My biggest frustration I guess is the toileting. He has difficulty eating

easily and although everyone says I shouldn't be, it is embarassing to take

him out to eat. If he doesn't sleep well and I don't I am a real grump and

don't handle my duties well at all. I pray continually for patience as I run

short many many times during the day. Presently, however, I am getting some

respite. He usually goes to a social Alzheimers/Dementia Adult Day care one

day a week. (we pay for it--$60.00 a day for 8 am to 5 pm) I have the

Volunteer Transportation Center pick him up and bring him home which is

free. (we live in the boonies) I also have Public Health nursing service

helping out. The nurse comes to check on us every two weeks and a home

Health Aide comes in 3 mornings a week (for an hour). She shaves him,

washes his hair, dresses him (if we haven't already) and helps with his

breakfast. I take the hour and go out for coffee usually at my

girlfriend's--so wonderful since I can no longer leave him to go out at all.

All our married life (44 years) he has fixed everything, done the hard jobs,

helped with chores around the house. Now everyday it seems that there is

something new he cannot do.

We are comfortable financially and have 3 great kids and their families who

are great about helping us. They are all nearby and are very generous with

their time and assistance. My family are all within a half-hour or hour away

and are very helpful as well. My brother in Michigan calls regularly to

check in with me. Ray's family has not even called him in 6 months and they

are all nearby. Last spring one sister refused to take Ray for 2 hours when

I had an appt. He has 4 siblings--3 are sisters. They have always been

fairly close since their parents died when they were all young. It is harder

for me, than him. Although he would know them if they called or came, he

doesn't seem to ask for them or anything. ( asks for his mother who has been

gone for 50 + years, tho).

That is our story and I hope I didn't go on too much. I know there will be

some good contacts made and I look forward to your messages. Leona

I've learned to not sweat the petty things, and not pet the sweaty things.

(Now if I could just remember it under stress!!)

Welcome to LBDcaregivers.

[Guest guest]

Hi Leona,

Among all the stressful things you mentioned, you certainly have a wit

about you! Leona, may I ask why you don't have the home health aide come

in at least 4 hours a day 5 days a week (since you said money was not a

problem)?

Norma

" Leona

Chereshnoski "

<lchereshnoski@tw To

cny.rr.com> <LBDcaregivers >

Sent by: cc

LBDcaregivers@yah

oogroups.com Subject

new member

11/15/2007 02:01

PM

Please respond to

LBDcaregivers@yah

oogroups.com

My name is Leona (age 63) and I am primary caregiver for my husband, Ray

(age 65), and we are both suffering from LBD--he has it and suffers, I

suffer because he has it. We take things one hour or so at a time. I

just

found this " list " but have belonged to the Yahoo Caregivers support group

for quite a while. Ray was diagnosed in Feb. of 2004 with Parkinson's

disease and was treated by a local neurologist for 1 1/2 years for that

disease. After getting up to 7 medications and no improvements and a

continual decline, I found a Parkinson's Center in Syracuse, NY (about 60

miles away) and took Ray there. On our first visit with Dr. Dragos

Mihailya,

he told us that Ray's problem was probably Diffuse Lewy Body Dementia. He

removed several of the meds he was taking and changed some. We still don't

see any improvement and a continual decline but now we know why. I knew

some

about Parkinson's disease because my mother had it for 2 years before she

passed away.

My caregiving duties are very difficult for me. I never wanted to be a

nurse, or a maid, or a cleaning lady. I retired earlier than I had planned

to from my job as a school librarian to become a caregiver, nurse, maid and

cleaning lady. My girlfriend said early on " well, at least you still have

your husband " . No, actually I do not. He is gone. The man I care for is no

longer my lover, my provider, my helper, not even a very satisfatory friend

anymore.

My biggest frustration I guess is the toileting. He has difficulty eating

easily and although everyone says I shouldn't be, it is embarassing to take

him out to eat. If he doesn't sleep well and I don't I am a real grump and

don't handle my duties well at all. I pray continually for patience as I

run

short many many times during the day. Presently, however, I am getting some

respite. He usually goes to a social Alzheimers/Dementia Adult Day care one

day a week. (we pay for it--$60.00 a day for 8 am to 5 pm) I have the

Volunteer Transportation Center pick him up and bring him home which is

free. (we live in the boonies) I also have Public Health nursing service

helping out. The nurse comes to check on us every two weeks and a home

Health Aide comes in 3 mornings a week (for an hour). She shaves him,

washes his hair, dresses him (if we haven't already) and helps with his

breakfast. I take the hour and go out for coffee usually at my

girlfriend's--so wonderful since I can no longer leave him to go out at

all.

All our married life (44 years) he has fixed everything, done the hard

jobs,

helped with chores around the house. Now everyday it seems that there is

something new he cannot do.

We are comfortable financially and have 3 great kids and their families who

are great about helping us. They are all nearby and are very generous with

their time and assistance. My family are all within a half-hour or hour

away

and are very helpful as well. My brother in Michigan calls regularly to

check in with me. Ray's family has not even called him in 6 months and they

are all nearby. Last spring one sister refused to take Ray for 2 hours

when

I had an appt. He has 4 siblings--3 are sisters. They have always been

fairly close since their parents died when they were all young. It is

harder

for me, than him. Although he would know them if they called or came, he

doesn't seem to ask for them or anything. ( asks for his mother who has

been

gone for 50 + years, tho).

That is our story and I hope I didn't go on too much. I know there will be

some good contacts made and I look forward to your messages. Leona

I've learned to not sweat the petty things, and not pet the sweaty things.

(Now if I could just remember it under stress!!)

[Guest guest]

Dear Leona, Your pain and frustration came through right to my heart. I

could feel the struggle without a man's help, companionship, or affection. At

least I still have my husband's affection.

He hasn't forgotten the feeling of being close with a hug and a kiss, which

we do several times a day for reassurance. He follows me around like a puppy

or a small child. " Honey, are you in there? " And you know where he meant. He

follows me to the wash area. I tell him, " Honey I am out by the boiling pot, "

and we laugh.

He hasn't been able to do anything for years now. He can't even set the

table completely, with the meal having been ready for some time when he is

still

putting things on the table, with my telloing him how, or what to do. Slow is

his first name now. But, he still walks and toilets himself. He has a

difficult time dressing himself. He does have small accidents in his clothes,

and

won't wear protection. I just wash a lot. I have all kind of protective

undergarments here, and he won't even wear a simple pad.

My darling husband, is having a lot of hallucinations. He said, " I don't

know what I am going to do about that baby in my bed all the time. I wanted to

snuggle to it this morning, and puff it was gone. " I asked him if he would

like for me to put the teddy bear in bed with him so he could snuggle it

instead. " No, I'm not ready for that, " he told me. I may slip in during the

night

and put it in his bed. It's a large soft bear.

I am sure by now some have referred you to Our Main Page, to the List

section. It will help you a great deal.

I deal with a lot of health issues of my own, and have all of this whole

scenario on my hands.

We have a large family but most are out of town. One is consistent with her

help. She has had a bad cold for the last two weeks, and she doesn't dare

bring it to us. We do have a cleaning girl once a week. But, the medications,

about 20 pills a day for each of us, the doctor appointments,

the groceries, and other duties are on me. Our calendar is so full there is

hardly space to write anymore.

I used to have many hobbies, and haven't found time for them. If I was

stronger I guess I could resume some of them. I am 75, and time is catching up

to

me, as well as health issues.

But, Leona, even though our mates are not there, they are still the person

we loved, and still love.

That is why we keep on keeping on. You are just like the rest of us

caregivers, and we identify with you 100%. Love is the strongest medicine for

ourselves that I know. It is hard when frustrations mount, but often time, that

is

when it is time for another hug, and touching. He will feel your touch, and it

will soothe you a bit. It works for me. Hang in there and pick a leaf that

is ready to fall. Look at it and marvel at how in spring it all comes back

again. Take his sleeping time to step outside and breath the fresh air. Let you

heart and imagination soar.

Love a bunch

Imogene

Caregiver for my true Texas Gentleman Husband of 37 years. He has LBD with

Parkinsonism.

A happy personality is contagious. Infect someone today.

In a message dated 11/15/2007 1:01:38 PM Central Standard Time,

lchereshnoski@... writes:

My name is Leona (age 63) and I am primary caregiver for my husband, Ray

(age 65), and we are both suffering from LBD--he has it and suffers, I

suffer because he has it. We take things one hour or so at a time. I just

found this " list " but have belonged to the Yahoo Caregivers support group

for quite a while. Ray was diagnosed in Feb. of 2004 with Parkinson's

disease and was treated by a local neurologist for 1 1/2 years for that

disease. After getting up to 7 medications and no improvements and a

continual decline, I found a Parkinson's Center in Syracuse, NY (about 60

miles away) and took Ray there. On our first visit with Dr. Dragos Mihailya,

he told us that Ray's problem was probably Diffuse Lewy Body Dementia. He

removed several of the meds he was taking and changed some. We still don't

see any improvement and a continual decline but now we know why. I knew some

about Parkinson's disease because my mother had it for 2 years before she

passed away.

My caregiving duties are very difficult for me. I never wanted to be a

nurse, or a maid, or a cleaning lady. I retired earlier than I had planned

to from my job as a school librarian to become a caregiver, nurse, maid and

cleaning lady. My girlfriend said early on " well, at least you still have

your husband " . No, actually I do not. He is gone. The man I care for is no

longer my lover, my provider, my helper, not even a very satisfatory friend

anymore.

My biggest frustration I guess is the toileting. He has difficulty eating

easily and although everyone says I shouldn't be, it is embarassing to take

him out to eat. If he doesn't sleep well and I don't I am a real grump and

don't handle my duties well at all. I pray continually for patience as I run

short many many times during the day. Presently, however, I am getting some

respite. He usually goes to a social Alzheimers/Dementia Adult Day care one

day a week. (we pay for it--$60.00 a day for 8 am to 5 pm) I have the

Volunteer Transportation Center pick him up and bring him home which is

free. (we live in the boonies) I also have Public Health nursing service

helping out. The nurse comes to check on us every two weeks and a home

Health Aide comes in 3 mornings a week (for an hour). She shaves him,

washes his hair, dresses him (if we haven't already) and helps with his

breakfast. I take the hour and go out for coffee usually at my

girlfriend's--so wonderful since I can no longer leave him to go out at all.

All our married life (44 years) he has fixed everything, done the hard jobs,

helped with chores around the house. Now everyday it seems that there is

something new he cannot do.

We are comfortable financially and have 3 great kids and their families who

are great about helping us. They are all nearby and are very generous with

their time and assistance. My family are all within a half-hour or hour away

and are very helpful as well. My brother in Michigan calls regularly to

check in with me. Ray's family has not even called him in 6 months and they

are all nearby. Last spring one sister refused to take Ray for 2 hours when

I had an appt. He has 4 siblings--3 are sisters. They have always been

fairly close since their parents died when they were all young. It is harder

for me, than him. Although he would know them if they called or came, he

doesn't seem to ask for them or anything. ( asks for his mother who has been

gone for 50 + years, tho).

That is our story and I hope I didn't go on too much. I know there will be

some good contacts made and I look forward to your messages. Leona

I've learned to not sweat the petty things, and not pet the sweaty things.

(Now if I could just remember it under stress!!)

************************************** See what's new at http://www.aol.com

[Guest guest]

Quoting Normal@...:

>

Hello - Welcome to the group no-one wants to belong to !

My heart goes out to you ! This story is *very* similar to ours -

although I am the daughter - my Mom and Dad lived with us through

Dad's ordeal- so I was co-caregiver with Mom. We did it almost all by

ourselves. Mom at first didn't want help but we finally got an aid in

for shower/bath 3x a week. But other than that we did it all.

> for quite a while. Ray was diagnosed in Feb. of 2004 with Parkinson's

> disease and was treated by a local neurologist for 1 1/2 years for that

> disease. After getting up to 7 medications and no improvements and a

> continual decline, I found a Parkinson's Center in Syracuse, NY (about 60

> miles away) and took Ray there. On our first visit with Dr. Dragos

> Mihailya,> he told us that Ray's problem was probably Diffuse Lewy

> Body Dementia. He

> removed several of the meds he was taking and changed some. We still don't

Well that is actually a good step. Our N didn't have a clue - we

eventually got a better N who also realized Dad was over medicated and

that it probably wasn't Parkinsons - but back in 2004 LBD was only

rarely known. When my sister and I suggested it to N - he said could

be - but what difference does a name make ? ;-)

> cleaning lady. My girlfriend said early on " well, at least you still have

> your husband " . No, actually I do not. He is gone. The man I care for is no

> longer my lover, my provider, my helper, not even a very satisfatory friend

> anymore.

yeah I remember that too - the Dad I knew who could fix anything and

everything or make anything from nothing - could barely turn on the

radio w/o breaking it !

>

> All our married life (44 years) he has fixed everything, done the hard

> jobs, helped with chores around the house. Now everyday it seems

> that there >is something new he cannot do.

>

YUP !

> That is our story and I hope I didn't go on too much. I know there will be

> some good contacts made and I look forward to your messages. Leona

>

Nope - not much I can say - other than give a hug and say KEEP HIM

OUT OF THE HOSPITAL. Hospitals aren't equipped to handle LBD and can

make a caln person at wakky - make them hallucinate etc. THEN they

give you Haldol to calm you - which is VERY BAD. Put my Dad in a

catatonic state - that lead to infection - that went septic. A bad

spiral - a bad end to an swful disease.

So enjoy the good moments that peek out now and then.

HUGS

Donna

[Guest guest]

Hi Gladys,

I just hate this disease and what it does to everyone! I was going to mention

when you posted the pic of your sister and your mom that it doesn't surprise me

a bit that your sister looks so young because your mom does too. I have

dementia on all sides in my family - parents, all grandparents except one who

died young and talk of great-grandparents having it too. After I read about how

well your mom took care of her body all of her life I'm not going to feel so bad

the next time I eat a second slice of cake or pour a little extra hollandaise

sauce on my eggs.

Courage

[Guest guest]

I hear you, Courage. I don't look much like my sister or my mother. I'm

about 3 inches shorter and about 3 feet wider! LOL I look like my Dad.

I'd rather die of a heart attack like he did than go through what my mother

is going through. I also think my sister would look a lot older if she did

more of the caretaking but, I won't go there. (wink wink)

Gladys

-- Re: new member

Hi Gladys,

I just hate this disease and what it does to everyone! I was going to

mention when you posted the pic of your sister and your mom that it doesn't

surprise me a bit that your sister looks so young because your mom does too.

I have dementia on all sides in my family - parents, all grandparents

except one who died young and talk of great-grandparents having it too.

After I read about how well your mom took care of her body all of her life I

m not going to feel so bad the next time I eat a second slice of cake or

pour a little extra hollandaise sauce on my eggs.

Courage

[Guest guest]

Thank you all who responded to my message. I do think I am in the right place,

although the Caregiver group was helpful, I think this will be more meaningful

for me personally and provide lots of information which my family and I need.

Someone mentionned a list of LBD stages which I cannot seem to find. Can

someone direct me to that, please?

Someone asked about the Health Aide. the services of Public Health (for our

situation) is presently covered by Medicare. The Health aide has to be giving

personal care for Ray. I could have her clean the bathroom since those are

Ray's problems in there but I hesitate to do that--I don't feel right about it.

An hour about covers what she does presently now. It is a big help to me. I

think the Social Worker and the nurse both pleaded the case for us to be covered

by Medicare because they were worried about me and my state of mind. I had

gotten so that I was crying all the time and my kids finally said " Mom, you have

to get some help " and helped me get things

set up. I can't believe the difference it makes in my treatment of our

situation and my attitude.

Again, thank you for your lovely messages and kind thoughts. I wish you all a

quiet night and some good rest. Leona

[Guest guest]

Leona, to find the stages look here.

_http://groups.yahoo.com/group/LBDcaregivers/join_

(http://groups.yahoo.com/group/LBDcaregivers/join)

This site in the third one down on your letter that I have included after my

letter.

This is our main page. Sign up, and sign on. When the page opens, on the

left is a list of

things available to all members. Such as Photos. Click " LIST. " When it

opens, brouse through it and the stages will show up.

I hope this helps.

Oh, Leona, and all of you newer caregivers, a big warm welcome.

Love a bunch,

Imogene

Caregiver for my true Texas Gentleman Husband of 37 years. He has LBD with

Parkinsonism.

A happy personality is contagious. Infect someone today.

In a message dated 11/16/2007 3:27:12 AM Central Standard Time,

lchereshnoski@... writes:

Thank you all who responded to my message. I do think I am in the right

place, although the Caregiver group was helpful, I think this will be more

meaningful for me personally and provide lots of information which my family

and I

need.

Someone mentionned a list of LBD stages which I cannot seem to find. Can

someone direct me to that, please?

Someone asked about the Health Aide. the services of Public Health (for our

situation) is presently covered by Medicare. The Health aide has to be

giving personal care for Ray. I could have her clean the bathroom since those

are

Ray's problems in there but I hesitate to do that--I don't feel right about

it. An hour about covers what she does presently now. It is a big help to

me. I think the Social Worker and the nurse both pleaded the case for us to

be covered by Medicare because they were worried about me and my state of

mind. I had gotten so that I was crying all the time and my kids finally said

" Mom, you have to get some help " and helped me get things

set up. I can't believe the difference it makes in my treatment of our

situation and my attitude.

Again, thank you for your lovely messages and kind thoughts. I wish you all

a quiet night and some good rest. Leona

Welcome to LBDcaregivers.

[Guest guest]

Boy, Gladys, I do hear you. I have said that a dozen times to my kids. Dad

died of cancer in 3 months. It was no fun but quick. When I talk to people

about smoking, I am half kidding and half real when I say Dad had it easier than

Mom. She had problems for a long time and 4 years with me. I don't want that.

Let me go like Dad went or quicker.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: new member

Hi Gladys,

I just hate this disease and what it does to everyone! I was going to

mention when you posted the pic of your sister and your mom that it doesn't

surprise me a bit that your sister looks so young because your mom does too.

I have dementia on all sides in my family - parents, all grandparents

except one who died young and talk of great-grandparents having it too.

After I read about how well your mom took care of her body all of her life I

m not going to feel so bad the next time I eat a second slice of cake or

pour a little extra hollandaise sauce on my eggs.

Courage

[Guest guest]

Leona,

If I may suggest, you may want to think about having the aide come a couple

of more hours a few days a week so that YOU have time (more than 1 hour) to

do things for yourself. It's very important. Wishing you the best, Norma

" Leona

Chereshnoski "

<lchereshnoski@tw To

cny.rr.com> <LBDcaregivers >

Sent by: cc

LBDcaregivers@yah

oogroups.com Subject

RE: new member

11/16/2007 04:27

AM

Please respond to

LBDcaregivers@yah

oogroups.com

Thank you all who responded to my message. I do think I am in the right

place, although the Caregiver group was helpful, I think this will be more

meaningful for me personally and provide lots of information which my

family and I need.

Someone mentionned a list of LBD stages which I cannot seem to find. Can

someone direct me to that, please?

Someone asked about the Health Aide. the services of Public Health (for our

situation) is presently covered by Medicare. The Health aide has to be

giving personal care for Ray. I could have her clean the bathroom since

those are Ray's problems in there but I hesitate to do that--I don't feel

right about it. An hour about covers what she does presently now. It is a

big help to me. I think the Social Worker and the nurse both pleaded the

case for us to be covered by Medicare because they were worried about me

and my state of mind. I had gotten so that I was crying all the time and

my kids finally said " Mom, you have to get some help " and helped me get

things

set up. I can't believe the difference it makes in my treatment of our

situation and my attitude.

Again, thank you for your lovely messages and kind thoughts. I wish you

all a quiet night and some good rest. Leona

[Guest guest]

By the way, Gladys,

Are you sure those " people " aren't there? Or do you just think WE can see them?

Hugs

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

new member

My name is Leona (age 63) and I am primary caregiver for my husband, Ray

(age 65), and we are both suffering from LBD--he has it and suffers, I

suffer because he has it. We take things one hour or so at a time. I just

found this " list " but have belonged to the Yahoo Caregivers support group

for quite a while. Ray was diagnosed in Feb. of 2004 with Parkinson's

disease and was treated by a local neurologist for 1 1/2 years for that

disease. After getting up to 7 medications and no improvements and a

continual decline, I found a Parkinson's Center in Syracuse, NY (about 60

miles away) and took Ray there. On our first visit with Dr. Dragos Mihailya,

he told us that Ray's problem was probably Diffuse Lewy Body Dementia. He

removed several of the meds he was taking and changed some. We still don't

see any improvement and a continual decline but now we know why. I knew some

about Parkinson's disease because my mother had it for 2 years before she

passed away.

My caregiving duties are very difficult for me. I never wanted to be a

nurse, or a maid, or a cleaning lady. I retired earlier than I had planned

to from my job as a school librarian to become a caregiver, nurse, maid and

cleaning lady. My girlfriend said early on " well, at least you still have

your husband " . No, actually I do not. He is gone. The man I care for is no

longer my lover, my provider, my helper, not even a very satisfatory friend

anymore.

My biggest frustration I guess is the toileting. He has difficulty eating

easily and although everyone says I shouldn't be, it is embarassing to take

him out to eat. If he doesn't sleep well and I don't I am a real grump and

don't handle my duties well at all. I pray continually for patience as I run

short many many times during the day. Presently, however, I am getting some

respite. He usually goes to a social Alzheimers/Dementia Adult Day care one

day a week. (we pay for it--$60.00 a day for 8 am to 5 pm) I have the

Volunteer Transportation Center pick him up and bring him home which is

free. (we live in the boonies) I also have Public Health nursing service

helping out. The nurse comes to check on us every two weeks and a home

Health Aide comes in 3 mornings a week (for an hour). She shaves him,

washes his hair, dresses him (if we haven't already) and helps with his

breakfast. I take the hour and go out for coffee usually at my

girlfriend's--so wonderful since I can no longer leave him to go out at all.

All our married life (44 years) he has fixed everything, done the hard jobs,

helped with chores around the house. Now everyday it seems that there is

something new he cannot do.

We are comfortable financially and have 3 great kids and their families who

are great about helping us. They are all nearby and are very generous with

their time and assistance. My family are all within a half-hour or hour away

and are very helpful as well. My brother in Michigan calls regularly to

check in with me. Ray's family has not even called him in 6 months and they

are all nearby. Last spring one sister refused to take Ray for 2 hours when

I had an appt. He has 4 siblings--3 are sisters. They have always been

fairly close since their parents died when they were all young. It is harder

for me, than him. Although he would know them if they called or came, he

doesn't seem to ask for them or anything. ( asks for his mother who has been

gone for 50 + years, tho).

That is our story and I hope I didn't go on too much. I know there will be

some good contacts made and I look forward to your messages. Leona

I've learned to not sweat the petty things, and not pet the sweaty things.

(Now if I could just remember it under stress!!)

Welcome to LBDcaregivers.

[Guest guest]

LOL Donna, I have to admit that the other night around midnight Mom had me

doubting myself. LOL It started to feel really creepy when she said " Look!

See how she's staring at me! "

Gladys (Now humming the theme from the Twilight Zone)

-- new member

My name is Leona (age 63) and I am primary caregiver for my husband, Ray

(age 65), and we are both suffering from LBD--he has it and suffers, I

suffer because he has it. We take things one hour or so at a time. I just

found this " list " but have belonged to the Yahoo Caregivers support group

for quite a while. Ray was diagnosed in Feb. of 2004 with Parkinson's

disease and was treated by a local neurologist for 1 1/2 years for that

disease. After getting up to 7 medications and no improvements and a

continual decline, I found a Parkinson's Center in Syracuse, NY (about 60

miles away) and took Ray there. On our first visit with Dr. Dragos Mihailya,

he told us that Ray's problem was probably Diffuse Lewy Body Dementia. He

removed several of the meds he was taking and changed some. We still don't

see any improvement and a continual decline but now we know why. I knew some

about Parkinson's disease because my mother had it for 2 years before she

passed away.

My caregiving duties are very difficult for me. I never wanted to be a

nurse, or a maid, or a cleaning lady. I retired earlier than I had planned

to from my job as a school librarian to become a caregiver, nurse, maid and

cleaning lady. My girlfriend said early on " well, at least you still have

your husband " . No, actually I do not. He is gone. The man I care for is no

longer my lover, my provider, my helper, not even a very satisfatory friend

anymore.

My biggest frustration I guess is the toileting. He has difficulty eating

easily and although everyone says I shouldn't be, it is embarassing to take

him out to eat. If he doesn't sleep well and I don't I am a real grump and

don't handle my duties well at all. I pray continually for patience as I run

short many many times during the day. Presently, however, I am getting some

respite. He usually goes to a social Alzheimers/Dementia Adult Day care one

day a week. (we pay for it--$60.00 a day for 8 am to 5 pm) I have the

Volunteer Transportation Center pick him up and bring him home which is

free. (we live in the boonies) I also have Public Health nursing service

helping out. The nurse comes to check on us every two weeks and a home

Health Aide comes in 3 mornings a week (for an hour). She shaves him,

washes his hair, dresses him (if we haven't already) and helps with his

breakfast. I take the hour and go out for coffee usually at my

girlfriend's--so wonderful since I can no longer leave him to go out at all.

All our married life (44 years) he has fixed everything, done the hard jobs,

helped with chores around the house. Now everyday it seems that there is

something new he cannot do.

We are comfortable financially and have 3 great kids and their families who

are great about helping us. They are all nearby and are very generous with

their time and assistance. My family are all within a half-hour or hour away

and are very helpful as well. My brother in Michigan calls regularly to

check in with me. Ray's family has not even called him in 6 months and they

are all nearby. Last spring one sister refused to take Ray for 2 hours when

I had an appt. He has 4 siblings--3 are sisters. They have always been

fairly close since their parents died when they were all young. It is harder

for me, than him. Although he would know them if they called or came, he

doesn't seem to ask for them or anything. ( asks for his mother who has been

gone for 50 + years, tho).

That is our story and I hope I didn't go on too much. I know there will be

some good contacts made and I look forward to your messages. Leona

I've learned to not sweat the petty things, and not pet the sweaty things.

(Now if I could just remember it under stress!!)

Welcome to LBDcaregivers.

[Guest guest]

Thanks, Lynn S. (That is so funny because when I see

Lynn in my mail list I keep thinking it's me.)

We self dx'd mom with LDB because of problems walking

and hallucinations. The hallucinations are constant,

and mom makes her own stories up so the visions make

sense.

When we hospitalized mom after finding her on the

floor they thought she had a stroke because the

symptoms came on so abruptly. I could now see how she

had been hiding her memory loss from me. She was also

combative and paranoid.

Mom's lucidy fluctuated sometimes day-to-day. A few

months later she improved enough that the nursing home

offered to move her to a non-dementia floor. But Mom's

downfall was that she refused physical therapy and

kept trying to walk unaided. She fell a couple of

times and got markedly worse with each fall.

This summer, two years in the nursing home, she had a

seizure and jerked her legs so harshly she broke her

hip while she was still sitting. And this was the

beginning of a bad downward slide.

I flew up to see her last week and she now hardly

moves at all and has problems swallowing. Yet, she

still knew not only me but also my husband who I only

married 6 years ago.

Lynn M

--- Lynn wrote:

> Hi Lynn M.,

> don't take

> the time to figure it out. It is soooooo mis

> diagosed . It is also weird about your moms liver.

> Welcome to the group. I hope you find it helpful.

> We are like a family here, so welcome to your new

> family. I think the only reason your mom wasn't told

> it's LBD is because so many professionals

> Wow! Tell me more about your moms symptoms, if you

> want to. I'm here for you. Besides, we are kindred

> spirits. We share the same name and spelling. It

> might be a good idea to add your last initial so

> there is no mistake who is writing.

> Take care!!!!!!!

>

> Lynn S.

________________________________________________________________________________\

____

Be a better pen pal.

Text or chat with friends inside Yahoo! Mail. See how.

http://overview.mail.yahoo.com/

[Guest guest]

Hi to and to all recent new members, and welcome to the best asthma group going. There are many great people here and we all share asthma and/or some form of lung issues. I hope you'll find a good, supportive, and informative group here. Sandy, I think there are a couple of other members with the lung problems you have. I know one lady has been in the hospital and hopefully got to go home over the weekend.Madeline, are you home now? Hope you're doing better. To the other moderators, I know from a diabetes group she owns so I know there won't be any problems taking her off moderation. I'll take full responsibility.Thanks , Co-Moderator.

[Guest guest]

Thank you, ! And thank you for telling me about this group!! I really appreciate it!!

Sandy

King Abernathy

_Abernathy@...

Subject: New member To: asthma Date: Monday, January 17, 2011, 10:36 AM

Hi to and to all recent new members, and welcome to the best asthma group going. There are many great people here and we all share asthma and/or some form of lung issues. I hope you'll find a good, supportive, and informative group here.

Sandy, I think there are a couple of other members with the lung problems you have. I know one lady has been in the hospital and hopefully got to go home over the weekend.

Madeline, are you home now? Hope you're doing better.

To the other moderators, I know from a diabetes group she owns so I know there won't be any problems taking her off moderation. I'll take full responsibility.

Thanks

, Co-Moderator.