Re: (unknown)

[Guest guest]

Atleast now you know you will not have to go through the journey of your

dads, alone. Anything I can do, whether you feel it is minimal or too

much to ask, would be a blessing for me to help with. You are in my

prayers.

Sandie

yes, school was still going, with no delays...just like the Des Moines

School District...

[Guest guest]

Joy

My dad had been diagnosed with Diffuse Lewy Body...another name used for

Lewy Body Dementia. At first, dad's neurologist thought either

Parkinson's Plus or Diffuse Lewy Body. After many, many tests from

blood work and CAT Scans to clinical testing all else was ruled out to

end with the diagnosis of Diffuse Lewy Body. I accredit dad's

neurologist to being young having knowledge of the current names of

dementias. Also, his neurologist has a very caring demeanor which was a

definate plus!

Sandie

Des Moines, IA

[Guest guest]

Hi -- a question for everyone. BTW I'm new today to the idea my dad may have

LBD instead of the ALZ he was diagnosed with.

What happens if I push this fact and the doctor decides maybe it's true,

changes my dads meds and so on. Does Medicare / Medicaid continue to pay or

must we begin all over again. He is currently in an ALZ nh. Am I better off

leaving it alone (still try to change the meds?) jr

In a message dated 1/26/2003 6:01:42 PM Pacific Standard Time,

sanclown@... writes:

> Subj: Re: (unknown)

> Date: 1/26/2003 6:01:42 PM Pacific Standard Time

> From: <A HREF= " mailto:sanclown@... " >sanclown@...</A>

> Reply-to: <A

HREF= " mailto:LBDcaregivers " >LBDcaregivers </A>

> To: <A

HREF= " mailto:LBDcaregivers " >LBDcaregivers </A>

> Sent from the Internet

>

>

>

>

> Great idea of contacting the media, however, it has already been done.

> I think July or Aug. of last year several of us had quite the list of

> media contacts, to no avail. It is never too late though. Maybe it is

> time to bombard the media again. I'm all for it. Also, I agree about

> out local stations. I have checked the website for channel 8 several

> times in hopes of getting a spot with Mollie Cooney and " Health News You

> Can Use " . Just haven't found any real contacts yet. So, my mission

> this week, again, will be to get some results in hopes of helping the

> LBD cause.

>

> As for questions for your dad, and his neurologist...your dad appeared

> to have a great day when I met him. His memory was awesome, his balance

> was fine, and his speach wasn't mumbled. I do know that there are " off "

> days as well, but that Sunday was incredible. So for now, I will just

> set back and wait for a report. Please let me know what the neuro has

> to say. One thing I did want to let your dad know is that the medical

> field, family, and all around him will still offer food, but if he

> decides not to eat...that is his decision. I wanted to be clear with

> that. It is the job of staff members, whether in a hospital or NH, to

> offer food, but your dad does have the right to let it set there. Do be

> aware though, there are plenty of nutrition drinks that may be

> introduced. This happened to my dad with NO phone call to me ahead of

> time. When I walked in on dad drinking the nutrition drink, asked for

> the MRS report (monthly report of all cares, meds.) and confirmed that

> dad had been given these drinks for a few days, I had it stopped. My

> dad knew if he wanted to eat or not, so sneaking in nutrition seemed to

> go against his wishes. I told him what the drink was, and he pushed it

> off the table.

>

> Thank you for including me...I am truly honored. I will call you this

> week.

> My prayers continue to be with you and your family.

> Sandie

>

>

>

[Guest guest]

Great idea of contacting the media, however, it has already been done.

I think July or Aug. of last year several of us had quite the list of

media contacts, to no avail. It is never too late though. Maybe it is

time to bombard the media again. I'm all for it. Also, I agree about

out local stations. I have checked the website for channel 8 several

times in hopes of getting a spot with Mollie Cooney and " Health News You

Can Use " . Just haven't found any real contacts yet. So, my mission

this week, again, will be to get some results in hopes of helping the

LBD cause.

As for questions for your dad, and his neurologist...your dad appeared

to have a great day when I met him. His memory was awesome, his balance

was fine, and his speach wasn't mumbled. I do know that there are " off "

days as well, but that Sunday was incredible. So for now, I will just

set back and wait for a report. Please let me know what the neuro has

to say. One thing I did want to let your dad know is that the medical

field, family, and all around him will still offer food, but if he

decides not to eat...that is his decision. I wanted to be clear with

that. It is the job of staff members, whether in a hospital or NH, to

offer food, but your dad does have the right to let it set there. Do be

aware though, there are plenty of nutrition drinks that may be

introduced. This happened to my dad with NO phone call to me ahead of

time. When I walked in on dad drinking the nutrition drink, asked for

the MRS report (monthly report of all cares, meds.) and confirmed that

dad had been given these drinks for a few days, I had it stopped. My

dad knew if he wanted to eat or not, so sneaking in nutrition seemed to

go against his wishes. I told him what the drink was, and he pushed it

off the table.

Thank you for including me...I am truly honored. I will call you this

week.

My prayers continue to be with you and your family.

Sandie

[Guest guest]

Shirley

Would LOVE to meet you in Las Vegas. Will write your name down for

that. Just starting with the idea of a gathering and am open to any and

all suggestions. Looking forward to meeting you in person and hugging

you in person instead of cyber hugs and/or over the phone. Take Care-

Sandie

[Guest guest]

Shirley

So glad you have found a few hidden blessings in the midst of the storm.

Praise the male nurse for his caring and compassionate ways.

Hugs-

Sandie

[Guest guest]

Joy

My prayers go out to you and your family at this time of passing. The

picture you painted does sound so very peaceful. It truly sounds like

your mom made a very fantastic last statement before exiting life on

earth. My condolences to you and Earl, and may life treat you kind,

show you love, and help in healing your heart.

Sending many prayers in your name to our Father to hold you in His arms.

Sandie

Des Moines, IA

[Guest guest]

, you have a right to vent and arn't we glad we can do it here?

I don't know how big the area you live in is, my sister lives in a small town

and I have been able to keep her from getting someone to move her back to her

house simply by talking to any and everyone I can find to tell, and the place

where her apartment is have people on the look out. She did have someone

there twice in trucks to move her but thank God they went to the office first

and was told she was not moving back to her house.

You would not believe the people she called, one person she had not seen in

probably 30 or more years, now how did she remember him???? Only God knows!!

Can't remember what she had for lunch but can remember an x brother-in-law

from 30 years ago!!!!

Oh well, its the disease!!!

You take care and vent vent vent

Jayn from S. GA

[Guest guest]

A note of concern about your father being well enough to get into trouble but

not well enough to keep himself out of trouble. A friend of mine father in-law

had a building torn down in their little town that they did not own! Talk about

a mess to untangle! Luckily it needed to be torn down but it was a surprise to

the owner the the person doing the work!

The father in-law was not LBD diagnoised but did have parkinsons. Keep a eye

out! Good luck

Colleen in Missouri

(unknown)

This disease is so frusterating. Just when things are going ok,

things change. My dad got mad at my mom and told her he would stay

with her until after the surgery was done,then he might just leave.

Don't know where it go. I guess he was on the phone calling people,

and so he called my brother and has it in his head that he wants to

build a modular home, my brother asked him if mom knew he was on the

phone, and that made him mad. He is also always wanting to drive,

told my mom and brother that he was going to get an old truck and

drive. WE need to find a hobby for him, because when he is doing

better, he gets bored and starts thinking up things to do. I know he

called my brother because he knew what I would say, now my guess is

he's mad at my brother.

My mom takes it in stride, and tries to treat him normal, because he

just wants to be treated with respect. He really doesn't understand

why he can't drive. I'm afraid he is going to sign some legal papers

some time and she won't know it, until someone shows up to start

building a new house, however, she does hold Power of Attorney for

him. He can no longer make legal or medical decisions for himself.

I've had sick kids, so I've had to stay away, but need to take him

out. He's mad because my mom can't take him to Minnesota to see my

brother. She has been sick, and does not feel up to it. I have a

dinner to go to this week-end, otherwise I would take them.

My dad has swelling problems in his ankles also. He also has

diabetes, and is going to see a foot doctor today because of sores on

his feet.

I hate this rollercoaster ride!! It sure isn't fair is it? Thanks

for letting me vent.

C.

Adel, IA

[Guest guest]

Jayn

Sounds like you are really on top of this LBD thing. Quick thinking to

tell everyone everywhere of your sister wanting to move. The

manipulation part of the disease can be so very believable at times.

Sometimes it would take me days to fix things my dad had 'broken' so to

speak. Phone calls he made, appliances broken, lost keys...the list is

endless. Stay strong and keep the faith.

Sandie

Des Moines, IA

[Guest guest]

We too had the problem of how to get dad to stop driving, he kept saying

there was nothing wrong with his driving, until one day, he took his old pick

up truck out and turned up back at the house without it. He couldn't

remember where he'd been or where he'd left the pick up.

He never mentioned the incident but stopped driving shortly after this, but

it was a sad day for us all

Siobhan

P.S We found the pick up after four days and much driving around!!!!

[Guest guest]

Martha

Just a quick hello.

My father has not been diagnosed with LBD but from this wonderful group of

people here and a certain amount of research, we are fairly sure that is what

he has. We would have noticed certain things as long back as nearly 10 years

ago.

Your post struck a cord because dad is only 58. Do you know what was first

noticed about your brother?

Perhaps you'll know more after your trip. Drive carefully!!!!

Siobhan

Ireland

[Guest guest]

Early hallucination & problems with balance and gait are usually among the

first symptoms seen in LBD. In contrast, short-term memory impairment and

disorientation are usually among the first symptoms seen in AD.

Re: (unknown)

Martha

Just a quick hello.

My father has not been diagnosed with LBD but from this wonderful group of

people here and a certain amount of research, we are fairly sure that is

what

he has. We would have noticed certain things as long back as nearly 10

years

ago.

Your post struck a cord because dad is only 58. Do you know what was

first

noticed about your brother?

Perhaps you'll know more after your trip. Drive carefully!!!!

Siobhan

Ireland

[Guest guest]

Russ

I have found it rare, yet it does happen, that with LBD both symptoms of

PD and AD present at the same time. This was the case for my dad. He

had the falling, hallucinations, gait, freezing in doorways, short term

memory problems, delusions and disorientation all in the very beginning.

As the disease progressed, the falling stopped (or we learned more how

to help him walk and turn), the hallucinations stayed but seemed to

change, still walked with a gait, was stiff and rigid, memory loss

fluctuated, stooped forward posture, and a whole list of other symptoms.

Sandie

[Guest guest]

In a message dated 3/20/2003 6:19:46 PM Pacific Standard Time,

littlebutterfly@... writes:

> Gail in Colorado here, where we have just finished the Blizzard of

> 2003. total for the city of Denver, 31.5 inches. Needless to say the

> city was totally paralyzed yesterday and not moving very well today.

============================================

Hi Gail -- anymore snow expected? I love snow but not at that depth.

Joni

[Guest guest]

Gail

Nice to see a post from you, especially with the recent snow storm.

Stay warm, and be careful.

Sandie

[Guest guest]

Gail,

What a cool slide show! Hope some of it warms up and melts!

Donna, In MI where we don't have snow right now!

[Guest guest]

Gail

Thank you for the slide show. I have cousins that live in

Loveland...haven't talked to them lately, and wonder if they too are

snow bound.

Take Care and stay warm-

Sandie

[Guest guest]

Gail

Thats great compliments about UPS. Thank you. I really like working

there, so far just part time but with all medical, vision, and dental

benefits.

Sounds like you are right on track with your step mom in helping but not

being pushy. Please do keep us posted!

My prayers are with you.

Sandie - where it stopped snowing here a couple weeks ago, and off and

on we have had 60-65 degrees (Farenheit, for our International family).

Loving the warmer weather, when we have it...so far has been sporatic...

[Guest guest]

Dear

Remember, I have been where you are. I don't want you to feel

overwhelmed, so if there is anything I can do, please let me know. We

can get together and talk, hug, and/or cry if you need to. Also know,

the offer stands if you need help with your dad.

Sure sounds like you have had quite the share of struggles. One of the

many horrible issues with LBD is the fluctuations. They can creep up

when we least expect them. Sometimes it is hard to know if a change is

a fluctuation or progression.

You may call me anytime for anything. My prayers are with you and your

family. May you find strength to help your mom and dad through this

change in life.

Blessings to you!

Sandie

[Guest guest]

One more thing, in the very beginning, my dad had indicated to the nurse

checking in on him in his apartment that he would harm himself. She is

required to report that, so she called me first and we decided to admit

him to the Mercy lin Center. He never purposely did harm himself,

but there were times through out the disease that he would hit windows,

counter tops, and even lashed out at a couple staff members at the NH.

I wanted you to know, your story sparked that memory for me, and I feel

that I know the many emotions you are feeling after hearing what your

dad said.

My prayers are with you!

Sandie

[Guest guest]

I've noticed that it's often the case that spouses will " cover-up " symptoms

of their LO to the largest extent possible, and purposefully attempt to hide

the severity of problems from the rest of the family. Sometimes, it is the

affected spouse that requests that the children " not be bothered, " or

one-or-the-other spouse is too embarrassed to mention/admit there is a

problem. I think that sometimes this " hiding " approach is unwise. Many

times, once adult children realize the extent that their parents are ill,

they'll experience huge feelings of guilt that they didn't do something to

help earlier. In one instance, the adult child was extremely angry at his

affected father's second wife. He felt that she had somehow slighted him by

not informing him of his father's real condition earlier.

I understand the motivations of parents to " hide " symptoms from children.

It is a natural, protective, parental instinct.

Just thinking out loud... -Russ

(unknown)

Welcome to all the new members. This is a really hard diease. My

mom's surgery went very well. She was up and walking yesterday, but

had a set back last night. She is having trouble keeping things

down, and she was running a ferver.

Had an episode with my dad at the hospital yesterday. He wanted to

look in the gift shop, and he was trying to get something off the

wall with his cane. I told him that he couldn't do that, well that

made him mad. I told him he could look at things, but need to ask me

or someone for help. He then tried to pick up someting and again I

reminded him he needed to ask. He was then mad, and announced to

everyone in the elevator that he was cutting me out of his will. I

said I didn't care, that was ok with me. When we got to my moms room

he pouted, and I told her what had happened. He then wanted to go to

his home, and I told him that was possible, but mom would be coming

home to my house soon. I left so he could talk about me to mom, and

when I came back, he was blow drying the light socket. He was really

out of it.

I think my mom has been covering for him more then we realized it.

She thinks he will be ok when he gets back home, but he needs care

all of the time. He is really bad about dropping things, and we is

always spilling, so we found a coffee cup with a lid that helps the

slipage. He got chocolate all over my car seat belt, so my husband

had to clean that. I didn't realize how bad he had gotten. I'm

tired and I've only been doing this for a few days. He gets mad and

totally shuts down. I felt bad because last night I had to get up at

11:30 and put him to bed, and he apolized for having to take care of

him.

C.

Adel, IA

[Guest guest]

,

Thank you for your kind words. I know I was having a bad day. I was not able

to sleep much last night. But I am feeling a little better today. Although

unfortunately my husband had to leave today for a business trip. So it will

be a hard week usually he and my 22 year old daughter help with my 10 year

old. She is great but she misses Mommy and always wants me at home. Luckily I

pass the hospital on my way home so I stop for about 1/2 hour. Usually she

doesn't even remember I was there 10 minutes after leaving. It's kind of fu

nny when she gets aggitated and angry she gets more clear headed. But that is

when she gets dangerous.

I am so sorry about your dad. How long has he been diagnosed with LBD? Is he

having internal bleeding? You are very lucky to have someone that understands

close to you. My daughter and I are looking for a group for me to go. She is

very worried that I will collapes. But I will be OK.

Good Luck,

In a message dated 4/6/2003 7:00:16 AM Central Standard Time, crawf5@...

writes:

> I'm so sorry for what you are going through. There are bad

> days and there are good days. Right now you are having one of those

> really bad times. I know exactly how you feel that you wish they

> could just go to sleep and never wake up. We are dealing with that

> right now. It's very important that your family discuss these things

> because you just never know when it will happen. I've found that the

> doctor's and nurses don't even know about LBD let alone know how to

> treat them. I've always had to explain it to everyone

>

> It's nice having Sandie close to me because she is there for us and

> it helps especially at this time. She has been there. Try and find

> someone or a support group through the Alzihemers Assoc. My brothers

> have been very supportive and I'm sorry it is just easier for your

> brother to ignore it like it will go away if he does. I would

> suggest this group to him. It is probably in denial and it is hard

> to accept, but you have to so you can move on.

>

> Thank you Sandie for keeping the group updated for us. I had a few

> moments before I'm getting in the shower to start my vigil at the

> hospital again. Last night when we left, he was resting comfortably

> and his blood pressure was low. I just don't want him to be in pain

> and go peacefully. He has already suffered so much, and he has great

> faith in God.

>

> Keep you chins up everyone!!!!

>

> C.

> Adel, IA

[Guest guest]

Thank you Gail and please, you are not having a pity party and if you are you

deserve it. We have all expressed frustration here so express away.

I'm so sorry that your father's wife is making things so difficult for you. I

hope she comes to realize this soon and that you and your father can have a more

immediate relationship.

Courage

(unknown)

1. Did you have a good relationship with your LO who has/had LBD

when you were living under their roof?

My father travelled - I never knew when he was home or travelling.

He always made me feel that I wasn't good enough, etc

2. Did this relationship change once you were out on your own? Not

really until my mother became ill and was dying, I travelled to

Florida and cared for her during the last 3 weeks of her life, and

heard from and saw him several times in the next couple of years

until he remarried - it was made clear that me and mine really didn't

have a place in his or their lives, although I contuined to call him

several times a month.

3. Did this relationship change once you were aware of the dx of LBD?

His wife did not contact me for almost a month after the hospital

stay and him being put in a nursing home and it took me another month

to convice her that I was coming to see him (which I did) I call him

every week now - instead of twice a month

4. What is your birth order?

Only surviving child of 9 pregnacies

5. Were you the " responsible " child or the " rebel " or how would you

describe yourself?

Mom raised me to be independent and resilent - guess that made me the

rebel

6. Did you choose to be the primary caregiver (or secondary etc.

caregiver) or was this a question of circumstance? Please state if

you are primary or secondary.

Circumstances

7. If circumstance, please describe (was it geographical, monetary,

availability to take on these duties).

I am in Colorado and he is in Florida, and I am not really wanted

down there

8. Are you male or female?

female

9. Do/did you receive enough help from your relatives (siblings,

Aunts/Uncles, etc.)

I have received moral support from my cousin (my father's nephew -

this is a good thing from the beast - because we didn't know each

other) my sons are supportive (but my father isn't even a signature

on a birthday card to them) and am blessed with a wonderful DIL who

is right there every time I need her - even if I didn't know I needed

her. His wife - well she blames my mother for this (she passed 20

years ago)

10. If you knew then what you know now, would you have changed your

role in caregiving?

No, I would not and will not make it more difficult for him -

Fist of all thank you for the birthday wishes - my youngest son (29

this year) says that the only birthdays that count are the ones that

are speed limits - next year it counts - double nickels. Secondly,

sorry this sounds so whinny and self pitying, and long - but it is

where I am at the moment. I would like to be there, but I realize

that I would probably do more damage than good, he is in a safe

place, with (I hope)adequate care, a neurologist that sounds like he

is fairly well educated, told my father's wife, that he, the doctor,

has told his own wife, that should he get LBD that she is to make

sure that no extrodinary means are taken to prolong his life.

end of pity party - thanks every one

Gail

[Guest guest]

Just wanted you to know you are in my thoughts and prayers.

Love and hugs-

Sandie