Re: hello, heres my story

[Guest guest]

,

I think if you can you should go now to see your Dad. My Mom had such a

rapid decline, from living with me 4 months ago to where I needed to place

her in a NH.

I have one sister who last saw Mom the end of December and one brother who

have not seen Mom since last September. The both live 8 hours away in 2

different states.

I hadn't expected this to happen so quickly. I thought I would have my Mom

with me for at least a few more years before I would need to place her in a

NH. Or I had hoped that before things got this bad for her that she would

have quietly passed on.

But I still treasure every moment I can still have with my Mom. There are

good times.

Hope this helps some.

Mariea

[Guest guest]

Dear ,

There is SO much in your post that I hardly know where to start to respond!

First, I am so, so glad for your mom to have an understanding daughter like

you. I can tell you as the spouse of an LBD patient, it is a very hard task

to caregive for the very simple reason that during good spells, or when out

and " on stage, " the patient can seem so alright that others have difficulty

believing things are as bad as they are. You see your life mate changing

into someone you hardly know. Not quite the same as expecting that a parent

will deteriorate before your own generation does. Your mom is a very lucky

lady to have you.

Second, while your dad may physically make the trip at Christmas, it is not

unreasonable to expect him to be fatigued, confused, and generally " out of

it " simply because of the trip. Dementia patients of whatever definition

become dependent on the familiar, and when it changes most have trouble

handling the difference. I know that travel to Alaska can be extremely

expensive, so if the issue is to have the whole family together one last

time, the most practical thing would be for your folks to come down. Just be

prepared . . .

Third, I personally believe that LBD is harder on the patient than

Alzheimer's, which doesn't have those cognitive fluctuations. My husband is

fully aware of his Parkinsonism, but only occasionally of the cognitive

aspects. When he is, it puts him in a funk to know that he is deteriorating

and what may eventually happen. He knows his diagnosis.

As to good days and bad days and will his days be good when you visit - a

toss of the coin. I have seen my husband go through two terrible periods

last year and this, with me each time thinking he would never improve.

However, after the most recent, only a few months ago, he did better than I'd

seen him in several years. I wish there was a way to guage when the good and

bad will come and go, but no such luck.

Won't it be wonderful to help your dad finish his book? What a wonderful

legacy!

As for your mom's job, I hope she can avoid burnout. It wouldn't at all

surprise me that she would give up the job, simply because she has no escape

from " caring " for others. If you CAN go up before Christmas simply to be a

support, you have no idea how much it will probably mean to her. I say that

as a mother myself.

Welcome, . Glad your mom referred you to this site.

Cheryl

[Guest guest]

That is kind of the thoughts I have been having too. Things seem to

be moving rapidly. I mentioned this to one of my brothers and he

said oohhh dad will be around for a while yet. My reply to him was

yes, he may certainly be around for awhile...in body

His mind however is something diffrent. That kind of stopped him

mid sentence. Everyone is planning on being here for Christmas at

this point. And I am sure we will have good days and bad days, I

just tend to think that I would like to spend some time with him

when I know I will have more chances at good days than bad days.

Thanks for your input Mariea

[Guest guest]

I can tell by your story that your mom is a wonderful person for

recommending this group to you for support. She is still caring for you

and your feelings, as well as your dad and everyone else in her life. I

am so glad you found this group and hope you get the information and

support that I have gotten out of it. Your mom is right, there are many

wonderful people in here and so many that can honestly say " I know what

you are going through. " As for going to see your dad while he is still

fairly with it...follow your heart. Fortunately with the proper meds.,

LBD symptoms can be somewhat prolonged. Keep in mind that this disease

fluctuates, and sometimes, often. What may seem like a progression, may

only be a fluctuation. Sounds confusing, and really, it is. Trust your

heart, pray, and stay strong. Please ask any questions and vent when

you need someone. You are truly blessed to have a mom so caring!

Sandie

Des Moines, IA

[Guest guest]

> I think it will be a great place for us to

> go as things develope and know that we aren't alone.

> and for mom and dad...we love you...we are thinking and praying for

> you always and anytime you need to talk...I'm here

Hey Guys this is my daughter ain't she great!

, Thank you sweety for the support and welcome to our group.

The information and the support you will find here are great. I

really don't know what to tell you either about weather you should

come up here, as I have found out on this site there is just no way

to predict what is going to happen between now and Christmas. I hope

you have visited www.lewybodydisease.org. You need to be informed

so that you can help the others through it. I don't want to get into

family stuff here as we can do that through e-mail. Just visit here

often and get and give support to the wonderful people who are here.

Love ya, Mom (Barb)

[Guest guest]

> Dear ,

> As for your mom's job, I hope she can avoid burnout. It wouldn't

at all surprise me that she would give up the job, simply because she

has no escape from " caring " for others.

Cheryl thank you so much for your concern. Just wanted to let you

know that since I have started working with my lady I have approached

burnout several times, but always was able to make the necessary

changes to avoid it. I am working with a group of people that are

willing to make changes. Now with Bill's new problem they are

willing to do whatever it takes to make sure that I am able to take

care of both of these wonderful people. I have to work and this job

is ideal as I work in the same building as we live. We have an

apartment in the house of the lady I care for and her husband. There

are other caregivers and all though I am primary caregiver (I make

dicisions with her husband about medications,Dr. appointments etc.) I

am not there 24 hours. Mostly I am home during the day and at night

when I work I am right there where Bill can get me or when my lady is

sleeping I am over here with the aid of a baby monitor and a personal

pager. Lately she has been sleeping so good that I don't need to

sleep during the day. Unfortunatly her sleeping so well may not be a

good sign as we seem to be losing ground with her. Darn I did it

again, I never seem to be able to start a note without having it turn

out to be a book. Cheryl you are such and inspriation to everybody

on here, keep up the good work. Barb

[Guest guest]

In a message dated 2002-08-18 8:53:29 PM Eastern Daylight Time,

wendal_98@... writes:

> ...do we fly to Alaska now and see him while he is still

> fairly together or wait till he comes down

I have been in touch with your Mom, she is one busy lady.

Why not go visit them now and all being well they will visit you at a later

date.

Re the telephone: we have purchased one that has 2 sliding levers, one to

make outgoing voices louder, and the other to do the same with incoming.

Good luck

Ev

[Guest guest]

In a message dated 8/19/02 3:31:27 AM Central Daylight Time, bhardy@...

writes:

> Just wanted to let you know that since I have started working with my lady I

> have approached burnout several times, but always was able to make the

> necessary

> changes to avoid it. I am working with a group of people that are willing

> to make changes. Now with Bill's new problem they are willing to do

> whatever it takes to make sure that I am able to take care of both of these

> wonderful people

Whew, Barb, but this sounds good!! I feel better for you already. :-) But

I am sorry to see that things seem to be on a downturn for your lady. So

glad to see that you have , though. That kind of support is SO critical.

Cheryl

[Guest guest]

> I am sorry to see that things seem to be on a downturn for your

lady.

Thank you Cheryl, I have really grown close to this family. Barb

[Guest guest]

> I am sorry to see that things seem to be on a downturn for your

lady.

Thank you Cheryl, I have really grown close to this family. Barb

[Guest guest]

, welcome. I have found you are never alone here. I work in a nursing

home and am trying desperately to educate the people there about this

disease. In a professional setting like this, I feel very alone right now

due to the lack of knowledge and understanding. My father is still in an

early stage and quite functional. I pray he stays there, but I know better.

It does feel good to know that there are people who are here to listen and

undetstand.

[Guest guest]

> , welcome. I have found you are never alone here. I work in a

>nursing home and am trying desperately to educate the people there

>about this disease.

, hi I am 's mom, her dad, my husband of 39 years, is

also in the early stages. We live in a small community and there are

not too many people who have heard of it. Bill is still functionall

too ( I do give him his meds and find I am having to do more for him,

he has been doing real good for about 10 days but the last coulple of

days he has been worse again. I worked in a Nursing home, but am now

doing in-home care with just one lady, I have worked with her for

over three years. She has had Parkinson's disease for close to 20

years, imagine my suprise when Bill was diagnosed with PD 2 years

ago, but now we are pretty sure he has LBD. What do you do in the

nursing home. Is your dad still living at home, is he alone? Keep

trying to get the word out, I have a feeling that within a couple of

years LBH won't be so unheard of. Barb

[Guest guest]

Barb, I am the Director of Rehab and also a speech therapist. I find that

working in the home and dealing with it at home is so hard. In fact, I took

the past 7 months and worked with babies so that I could disconnect from how

emotional I was becoming in work. I found myself crying with my patients

much more than I wanted to. I didn't feel I was being good support for them

because I would look in their eyes, and see my dad. I am now back working in

the nursing home. My mom and dad have been married for 43 years in October.

My dad is still at home and is very functional. He is starting to loose

track of which one of the kids were there to visit. There are 10 of us

ranging from 43 to 20 yrs old and 18 nieces and nephews ranging from 24 to 1

year old. So I can't blame him for loosing track. Its funny, I still can't

get used to the concept that this is happening to him. I am thankful for our

support system in caregiving and how large it is. My brothers are a little

more disconnected at this point, it seems harder for them to accept. In

fact, I sent my one brother a nasty e-mail the other day to express my

frustation with him. I know this is the last thing we need, but instead of

saying that he can't deal with this--He is expressing to others that I am

blowing this " out of proportion " and exaggerating. I am glad you and

have each other, it makes it so much easier to cope. I hope someone can find

something to slow or stop this process soon. But I am realistic. I will

definately continue to get the word out- I think people need to know how to

deal with this better. Talk to you soon.

[Guest guest]

>He is expressing to others that I am blowing this " out of

>proportion " and exaggerating.

Hi , How wonderful to come from such a large family! I am

afraid that our oldest son is going to do the same thing that your

brother is doing, he has already expressed to that " everything

is going to be okay " . Our younger son just isn't saying too much at

all...seems they both have their way of dealing with it (or not

dealing with it). Bill was so much better today, got a good nights

sleep. We go to his GP here tomorrow and I am afraid that the doctor

might think we jumped the gun on thinking it is LBD, I would like to

think that but I am living with him and seeing all the little

things...

How is your mom coping? Is your dad aware of what is happening at

this point? Some of it seems to bother Bill and some of it doesn't.

It sounds like a lot of you live close to home, that is great. The

best thing you can do for your mom is to listen, is very good

at that. Laugh with her and cry with her and lots of hugs for

everybody. Remember to take care of you. You are in my prayers.

Barb

[Guest guest]

Barb, I went out with my brother two nights ago and we talked things out. He

said it isn't that he doesn't accept what is happening, he just feels better

hoping for the best. Although, I do forward him, my mom, and 3 of my sisters

most of these postings. My brother has agreed to be my parents finicial POA

and I will be their medical POA. I spoke to my mom about this and she told

us we were " hired " . I think it makes it easier on her not having to deal

with everything. As for how she is dealing, not well right now. The two of

them are totally sleep deprived, she got so upset with him the other night,

she told him everything that is happening to him. Initially, we told him of

the signs/symptoms--but stayed away from progosis. But now he knows. He has

been on Mirapex, which the MD reduced, an aspirin, and Clonzopen for the

sleep disorder--but he gets up after about 3-4 hours, and he has her up as

well. I called the Neurologist today, and they d/c'd the Clonzopen and

started him of Seroquel. I hope this helps, as I think she may ring his

neck, haha! My oldest sister lives 1.5 hrs away, and my one brother lives

about 40 min. away. The rest of us are within 10 minutes--with the exception

of my youngest brother who lives in Seattle, WA. He is stationed at Ft.

, but is gearing up either for Iraq or replacement in Afghanistan (sorry

@spelling). This stress is really hurting my parents. We try to listen, and

each of us tries to pick a different day to visit. My day is Sunday, and I

go for about 4-5 hours and bring dinner. This way, my mom gets a break from

cooking and can get away for awhile. I pray this stablizes, but I know now

what we are up against. Let me know about your GP appointment. I pray he

has good news.

[Guest guest]

> Barb, I went out with my brother two nights ago and we talked

>things out.

, I am so glad you and your brother got together. I think men

have a differant way of handling things like this then women, but

when the chips are down they will usually come through. I know our

oldest son does call more often which means a lot to us. Bill is

taking Ativan (sedative) for sleeping. It really helps, so far he

doesn't wake me up when he gets up, usually about 4am. He was waking

me when the hallucinations were so bad but they are a lot better

now...I think because of the cutting back on Sinemet, he does shake

more but says he can live with that. I do know what your mother is

going through, it hard to keep a handle on things when you are so

tired, and there are times I get really resentful that I am having to

do more and more for Bill, because once I start doing something it

then becomes my " job " , it is early stages yet so I better come to

grips with that because I know it is just beginning. I can still

leave him for a few hours so it isn't too bad yet.

Bill is actually doing pretty good so the doctor and I agreed not to

start him on anything else right now. I told you that I was worried

that since Bill is doing better that the doctor would not go along

with LBD but he has done some research on it to and says yes he is

pretty comfortable with that diagnosis. Bill has lost 8 pounds since

the end of June and since he is not a big man anyway can't afford to

lose too much. Bill told the doctor that it was because I wasn't

making any apple pies (funny man) Well I swore I wasn't going to

get on and write a book tonight, I need to get to bed. Take care and

God Bless. Barb on a really wet island in Alaska

[Guest guest]

I am so glad you have siblings sharing the caregiving. It sounds like

your family will be a wonderful support system, and with that, you will

be able to face this disease.

Saying an extra prayer for you....

Sandie

Des Moines, IA

[Guest guest]

Barb

Red flag here!! Please be very careful with the Ativan. Studies have

shown that LBD patients are very sensitive to neuroleptics...Ativan,

Haldol...being a couple of those. The neuroleptics can have adverse

affects on the LBD person. My dad had taken Ativan for almost a year

and with the progression, he was " out of control " toward the end. Once

I heard (in this group) that the med. was harmful I immediately called

the dr. and had it stopped. Coming off the med. was just as hard as

being on the med., but we made it. To date, I read up on any and all

meds. suggested for my dad and have refused many of them. Again, please

be careful with this med.

Sandie

Des Moines, IA

[Guest guest]

Ativan made my Mom more agitated! That was nearly 3 years ago before we had

the LBD Dx.

Mariea

[Guest guest]

> Barb

> Red flag here!! Please be very careful with the Ativan. Studies

have

> shown that LBD patients are very sensitive to neuroleptics...Ativan,

> Haldol...being a couple of those. The neuroleptics can have adverse

> affects on the LBD person. My dad had taken Ativan for almost a

year

> and with the progression, he was " out of control " toward the end.

Once

> I heard (in this group) that the med. was harmful I immediately

called

> the dr. and had it stopped. Coming off the med. was just as hard as

> being on the med., but we made it. To date, I read up on any and

all

> meds. suggested for my dad and have refused many of them. Again,

please

> be careful with this med.

> Sandie

> Des Moines, IA

sandie,could you please tell me what you mean by " out of control. "

my mam as been put on ativan recently ,she as become aggressive

towards everybody ,throwing cups , hiting people.we have been told by

the consultant of the dangers of neuroleptics and they are not

suitable for lbd.i will have to make enquiries about why she as been

given ativan.re:B12 elderly people in general can have a shortage of

this vitamin.

[Guest guest]

> Barb Red flag here!! Please be very careful with the Ativan.

Hi Sandie thank you for the red flag, several people have mentioned

that Ativan is a neuroleptic, in my drug book it is listed as a

Tranquilizer;Antianxiety agent. Bill's neurologist said that, in shot

form, it is the sedative they use before surgery. Bill was also put

on Risperdal and he ended up in the hospital so yes I am very careful

with the neuroleptic drugs. Bill is on a very low dose of Ativan

and seems to be tolerating it well, that and cutting back on his

Sinemet seems to have helped for now. Bill's doctor here and I are

hoping that Bill won't need to be put on anything else until we get

out to Seattle and see his neurologist in December. Right now we are

working long distance with him. My drug book does state that after

prolonged use Ativan is not as effective. It also mentions that in

older adults, over 60, it can have adverse reactions. which may be

what happened with your father. The serious side effects are the

same things we are trying to get rid of, Hallucinations,

sleeplessness, etc. How is your father doing now? Take care. Barb

[Guest guest]

My MIL too was getting very aggressive with staff (hitting, yelling,

throwing things) at her group home and her Dr. attributed it to 3 things:

decrease in Paxil, sleep deprivation, and the group home was giving her PRN

doses of Risperidal at night to help her sleep. The extra Risperidal was

causing majority of the " bad " behavior. The side effects of Risperidal can

be exactly what you are taking the drug to treat.. hallucinations,

aggression, insomnia... Things are much better now that she is getting

Seroquel at night and her Paxil was adjusted back to 30mg.

Good luck with things.

Re: hello, heres my story

> Barb

> Red flag here!! Please be very careful with the Ativan. Studies

have

> shown that LBD patients are very sensitive to neuroleptics...Ativan,

> Haldol...being a couple of those. The neuroleptics can have adverse

> affects on the LBD person. My dad had taken Ativan for almost a

year

> and with the progression, he was " out of control " toward the end.

Once

> I heard (in this group) that the med. was harmful I immediately

called

> the dr. and had it stopped. Coming off the med. was just as hard as

> being on the med., but we made it. To date, I read up on any and

all

> meds. suggested for my dad and have refused many of them. Again,

please

> be careful with this med.

> Sandie

> Des Moines, IA

sandie,could you please tell me what you mean by " out of control. "

my mam as been put on ativan recently ,she as become aggressive

towards everybody ,throwing cups , hiting people.we have been told by

the consultant of the dangers of neuroleptics and they are not

suitable for lbd.i will have to make enquiries about why she as been

given ativan.re:B12 elderly people in general can have a shortage of

this vitamin.

[Guest guest]

By " out of control " I mean extremely aggressive, unapproachable,

hitting, combative, and very agitated. As the disease progressed, the

effects of the Ativan seemed to get worse. When I noticed Ativan can be

harmful, I instantly called the dr. and had it stopped. Well, some of

the staff at the nh tried to talk me out of it. As dad came off the

Ativan, he was still very aggressive and agitated. This took probably a

week or two...then he was very calm. He started talking again. He

talked about things I had done with him the summer before. Which all of

this took place around 6 months after summer. Anyway, as I babble here,

my point was to explain what my dad had went through. Now, any time any

med. is mentioned, whether in the psychiatric hosp. or at the nh I do my

research before it is introduced. In fact, for dads recent hospital

stay, he wore a bracelet that read " Sensitive to Neuroleptics " ...so glad

they trusted me. Please keep me informed as to how your mom is doing

and what you decide with the Ativan. Saying an extra prayer for you

today.

Sandie

Des Moines, IA

[Guest guest]

Barb-

Best of luck with the Ativan. It seemed to do the same for my dad, in

the beginning. As the disease progressed he became more and more

aggressive. It took a week or two to get out of his system then he was

very calm, slept well, and even started talking again. He hadn't talked

for almost a year.

Now, he doesn't talk again. He has lost about 35 lbs, and refuses to

eat most of the time. Yesterday he was out of his room, smiling most of

the day, refused to eat and wouldn't stay dressed.

Thank you for asking, it is greatly appreciated.

Sandie

Des Moines, IA

[Guest guest]

Sandie,

With your Dad refusing meals, is he also refusing meds? Managing this

disease is hard enough with medication, I can't imagine trying without it.

Did you find anything more out about the unnecessary hospital stay?

Keeping you in my thoughts and prayers,

Re: Re: hello, heres my story

Barb-

Best of luck with the Ativan. It seemed to do the same for my dad, in

the beginning. As the disease progressed he became more and more

aggressive. It took a week or two to get out of his system then he was

very calm, slept well, and even started talking again. He hadn't talked

for almost a year.

Now, he doesn't talk again. He has lost about 35 lbs, and refuses to

eat most of the time. Yesterday he was out of his room, smiling most of

the day, refused to eat and wouldn't stay dressed.

Thank you for asking, it is greatly appreciated.

Sandie

Des Moines, IA