Re: Long time, { LONG email} no say! {See!}

[Guest guest]

Donna,

Sounds like you have really been there and done that. God I dread if that

day ever comes. I wonder how many other diseases are out there that we don't

know about yet. I guess you really never know what goes on in others lives.

Good luck to all. Shirley

>From: mido101@...

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: Long time, { LONG email} no say! {See!}

>Date: Tue, 9 Apr 2002 11:28:58 -0400 (EDT)

>

>Hi all,

>

>I have been promising myself I would write an email soon. Hasn't

>happened. For those who are new, welcome and I am the only daughter of

>a woman who will be 88 on the 17th of this month. I had her with me for

>3 years. In September she went into a nh and it has seemed like a

>horror story. I don't know if I expected to much, or if this one is bad

>or if Mom is more unreasonable than most.

>

>Since she went in, the last week in September, I have been at the nh at

>least 2 times a day or more! Sometimes my daughter relieves me and goes

>1 of the times. Mostly the nh hasn't worked with me. I know how to

>eliminate problems, like " put her on the toilet 2x's during the day and

>you won't have to put 'incontinent " in the records! " I put her on and

>she doesn't hold it and get a bladder infection! I finally got them to

>get her tray up on the 1st cart. She was so angry at 12:45 when the

>last cart came, she wouldn't eat. Everyone else had been eating for 45

>min. And some how there is always something missing from her cart,

>juice, dessert, or food. I don't trust they will feed her and she can't

>eat alone. I have watched with the others and the aides and nurses try

>and quit fairly easily. So I have fed her lunch and dinner since she

>went in.

>

>But I could go on and on. She is a fighter and I find black and blue

>marks very often. She gets scared and fights. And they fight back.

>And her main problem is the same as it has always been, she doesn't

>sleep. For the three years I had her, I slept every other night most of

>the time. I put her into the hospital to " adjust her sleep meds. " I

>took her out of the hospital on her back. And that is what put her into

>the nh. I couldn't lift her and she couldn't walk like she could before

>she went into the hospital. Now I have pulled my back and hip out,

>doing what lifting she needs to go to the toilet.

>

>For you who are never expecting to have to put them in nhs, and never

>expecting to use medicaid, I can only say, try and do some homework

>early. I spent Dec, Jan, and Feb getting legal records straight..for

>medicaid and I am still having more problems this month. We had both

>our names on all kinds of stuff. I used most of the money over the

>three years that she had left, but that has nothing to do with will they

>approve it or not. If it had her name on, or if her name was on

>anything of mine, it counts! And never mind if it is spent!

>

>I had additional problems because her house is in WI. I live in MI.

>She can have a house in WI but not if she lives in MI! And she didn't

>have a house anyway as she had a marriage trust that said the house was

>hers until she dies. They wanted to count that as assets! So it cost

>thousands to clear it up. I needed a lawyer who works both states! Or

>sell the house. It is all so stressful

>

>But I have been wanting to respond to some of the things people have

>discussed as I always read and lurk here.

>

>I do need to get my ID from Rose, {or is it ?} as I continue to

>have a real problem getting into yahoo. I have tried 2 other times and

>not been successful. I think I have only gotten in 1 time. I just read

>my emails that come to my email box.

>

>Daryl, I hope you are wrong about Medicare and the Bush stuff. There

>should be more than " nothing new " as they described it as " major "

>changes. But I haven't heard anything new, has anyone?

>

>Cheryl, sounds like me, only it wasn't a change. Mom had always been

>pretty abusive. And it got harder and harder as I did more and more.

>Nothing I did was for her!!!!!! and anything I did for myself, including

>going to work, was to spite her. It was real hard toward the end. It

>isn't any easier now. She just gets me with new material. Now I have

>really got everything of hers and I get to do what I like and don't have

>to bother with her. Interesting what they can remember.

>

>After a two month fight, I got her off all the meds the MD had put her

>on, and she is on very minimal Xanax and Respital at night. Again very

>low doses. Psyc at the nh wanted to know why I didn't want to " just

>numb her " out with meds and what made me " think she doesn't " want that.

>That is what they do to make it easier for them. And it is what they do

>to those people who have no one up there to see what is happening. And

>there are lots of those!

>

>So, Cheryl, hard as it is, I wish I could have found a better way. I

>have lost most of the control and now fight with Mom and the nh!

>

>My sympathy to?? Is it who just lost someone. I am sorry my

>notes on your emails aren't as good as I thought.

>

>Mai Liis, I do think it is you who moved. I have considered that and

>the thought is so overwhelming I gave it up. Good for you!

>

>Pam, as always lots of good information. Thanks

>

>Eve F., sounds like things are getting rough there too.

>

>Sandie, , Terri, , Judy, I will try to respond sooner and

>more regularly. you have done well at keeping this going. Someone of

>you have people in Ladysmith, That is just north of where I grew up.

>

>Debbie, you have been here for some time and as always you are dealing

>with a parent as I am and it is different, as someone mentioned, than

>dealing with a spouse. In some ways it is better and some ways it isn't

>better. My Mom keeps telling me I can't tell her what to do! And many

>days I cry as I leave the nh, because she wants to believe she is so

>different from all those " others. " She can't walk, or eat alone, go to

>the toilet without help and just roams the halls belted in a wheel

>chair so she won't fall.

>

>I am going to really try and keep up better than I have been. But now

>it is time to get ready and go feed her lunch. Hope the rain stops soon

>and the sun comes out for everyone.

>

>Shirley. by the way, my Mom was in a major auto accident when she was

>young. Her grandmother was killed and she may have had a head injury.

>She used dye in her later years to keep the white out. There is sanity

>issues in the family. All of her sisters {4} had late late life

>dementia.

>And they all lived long.

>

>Donna, In MI

>

>A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

Donna-

I just read your post about your mom and the trials of nursing home

care. I have tears streaming down my face, not only for your

hardships but because of the realization of what is upcoming with my

MIL. I, along with the rest of the family, are watching the official

beginning of a catastrophic decline in the status of my brilliant MIL.

There are no good options. She lives alone and, and yes, is still

driving a car. We are not getting adequate intervention by the

medical staff. My MIL believes herself to be in very good shape and

that she can live on her own without difficulty. When, in reality,

she is beginning to neglect things like getting food in the house,

putting out trash, etc. She has no immediate family around, the

nearest relative is 2 hrs. away. She refuses all attempts of help,

figures that she is well enough and it is an insult to her

independence.

She did have an MRI, which was negative. She has just started on

reminyl to see if this will help. What has this drug done for others

on the board? She does not yet have an official diagnosis of LBD but

sure has the classic signs of fluctuations and major hallucinations.

She is going to see a neurologist but the first appt. is not till the

end of June. We are at wits end. I have talked at length with a

social worker who works with " emergency aid for seniors. " She said

unfortunately, we are waiting to the " shoe to fall. " I just feel so

hopeless and very, very sad for her... more tears are now running

down my face. Wow, this is like telling someone in person!

So, Donna, your post was informative and prospective of the very dim

future that this disease holds for an individual. I only can pray

that what is happening inside our LO's heads is not nearly as bad as

what we perceive that to be. I know my MIL has no clue of her

deficits, but I do believe she is fearful at times. As far as the

Medicare coverage goes, I can only speak from the point of what the

rules are in HOME CARE under medicare. I don't see any changes

happening in that area.

Daryl

[Guest guest]

In a message dated 4/9/02 11:26:34 AM Central Daylight Time, cmram123@...

writes:

> My MIL believes herself to be in very good shape and that she can live on

> her own without difficulty.

My husband was like that in the beginning, but I also noticed that once

intervention was started he seemed to be somewhat relieved. He was living

alone at the time, as I was working out of state. The MESS in this house

when I visited . . . the things being neglected and confused. He was there

when the doctor gave us the diagnosis but I don't think the implication

really registered. I chose not to bring it up, but when he asked what this

disease was about I told him. He repeatedly forgot about the cognitive

aspects and focused on the physical, which was fine with me. But from time

to time he comments about how his mind doesn't work right.

I'm so sorry for your pain, Daryl. It is hard to watch what happens with

this disease. And when you don't see someone for an extended period it seems

the changes would seem even more dramatic. Your MIL and family is fortunate

to have you looking out for her.

Cheryl

[Guest guest]

Daryl,

My father was on Reminyl and it was very good for him, it improved his

cognition greatly, made him much less stressed about his hallucinations

and helped enable him to have a very good insight into what was

happening to him. The only problem was that the doctor is a bit

suspicious that it caused a bout of vomiting after several weeks of

taking it. Apparently it can do this by building up some residues in the

body. This only happened twice in the six or seven moths that he took

it. While we had a very positive experience, I know Ann, who started

this caregivers group, had quite the opposite when it was tried on her

LO. As with many things in this disease, it is a case of try, but very

carefully monitor the situation, and see whether it is beneficial for

your MIL.

My father died last June at the age of 89 years so I am not able to give

you any personal information about its long term effects.

My thoughts are with you as with everyone else in the group who are

still struggling with this wretched disease.

In message <a8v4h6+dpsleGroups>, darylram writes

>Donna-

>

>I just read your post about your mom and the trials of nursing home

>care. I have tears streaming down my face, not only for your

>hardships but because of the realization of what is upcoming with my

>MIL. I, along with the rest of the family, are watching the official

>beginning of a catastrophic decline in the status of my brilliant MIL.

>There are no good options. She lives alone and, and yes, is still

>driving a car. We are not getting adequate intervention by the

>medical staff. My MIL believes herself to be in very good shape and

>that she can live on her own without difficulty. When, in reality,

>she is beginning to neglect things like getting food in the house,

>putting out trash, etc. She has no immediate family around, the

>nearest relative is 2 hrs. away. She refuses all attempts of help,

>figures that she is well enough and it is an insult to her

>independence.

>

>She did have an MRI, which was negative. She has just started on

>reminyl to see if this will help. What has this drug done for others

>on the board? She does not yet have an official diagnosis of LBD but

>sure has the classic signs of fluctuations and major hallucinations.

>She is going to see a neurologist but the first appt. is not till the

>end of June. We are at wits end. I have talked at length with a

>social worker who works with " emergency aid for seniors. " She said

>unfortunately, we are waiting to the " shoe to fall. " I just feel so

>hopeless and very, very sad for her... more tears are now running

>down my face. Wow, this is like telling someone in person!

>

>So, Donna, your post was informative and prospective of the very dim

>future that this disease holds for an individual. I only can pray

>that what is happening inside our LO's heads is not nearly as bad as

>what we perceive that to be. I know my MIL has no clue of her

>deficits, but I do believe she is fearful at times. As far as the

>Medicare coverage goes, I can only speak from the point of what the

>rules are in HOME CARE under medicare. I don't see any changes

>happening in that area.

>

>Daryl

>

>

>

>

[Guest guest]

Daryl,

Sorry, I didn't mean to make you cry. But I have been where you are.

My Mom drove after I took insurance off her car, " to save money if you

don't drive in winter. " She loved to " save " money. I lived 12 hours

away. She refused to live with me, " I am fine. " I had to wait for the

other shoe to drop and it will. I wish I had taken the bull by the

horns earlier than I did. The month before she came to live with me,

{three and a half years ago} I finally told her she had to see a Doctor

and just make an appointment. I didn't know what I was going to do. I

knew she would tell him I was lying about what ever I told him.

Fortunately he pulled out a little test. She couldn't answer any

questions. I just needed him to know.

It was major to figure out how I was going to get her to go to the

appointment. I just said we had to go, she had an appointment!! She of

course, told me she wasn't going!!! She went like a lamb to the

slaughter. If I had just stopped listening to her words, I would have

been OK. Then she just went . Had I known it was that easy, I would

have done it long before I did. She was normally 135 lbs and when she

weighed in at the MD, she was 103. She hadn't been eating. I said she

could either have in-home help or live with me and I was ordering meals

on wheels. {That was the second time.} She laughed at me and said she

would fire the help and cancel meals on wheels. She did neither. She

liked the company. She did complain to me a lot

The shoe did drop a month later. The MD told her she could no longer

live alone. My house or the nh!! And I had to go get her and didn't

know how she would make a 12 hour trip here to MI. I just went as fast

as I could go. She mostly didn't know where she was or that I was bring

her home.

Most of that stuff, I just held my breath all the way through and

wondered how it would turn out. Then I lived day by day for three

years.

I never expected at her age, three years later she would still be in

fairly good health. Except for her mind. And at this point I almost

believe it could go another 3 years.

I believe you, about Medicare, I just wish it were different. I would

probably bring her home, if I had help. I left again today in tears.

She is beginning to have physical pain. And the aides just pick her up

and move her and it is too fast and scares her.

I think Mom knew a long time ago and the longer they think they can keep

it a " secret, " the longer they can refuse help or stay in denial

themselves.

Donna

A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com

[Guest guest]

Donna

Wow, sounds like you have had a full plate. My dad is also in a nursing

home. I have had my share of " fights " with the staff there.

Fortunately I feel they have come to their senses and decided to give

into me. They know that my dads best interests are what drives my heart

to give him only the best of care......even though it is an ongoing

battle to stay on top of things, I feel we have made progress. Hang in

there with Medicare.....this is a nightmare in itself. I truly dred

calling any government office, and Medicare tops all lists. Take down

all names you talk to, times you spoke, and what they said. I actually

have an archive of information on my dad from the very beginning. I

have often said if my house catches on fire, everyone is on their own as

I am grabbing the calendar and all information relating to my

dad...........arghhhhhhh!!! Atleast with your mom in a nh, you can rest

at night. I know the feeling of crying when you leave though. There

have been many times the tears well up while still visiting my dad, and

the staff that really knows me knows to move out of my way as I will be

leaving. I don't like to cry in front of my dad as he then knows how

bad it really is. I stay strong for him, and have my moments on the way

home from the nursing home. I am so sorry you are going through all of

this, as if the LBD wasn't enough!! I am so glad you wrote, and had

wondered what had happened. Thank you for the reply and I hope to see

you in here more again.

Sandie

Des Moines, IA

[Guest guest]

Dear Donna, My, but you are still going through it! You amaze me, though, with

your long, well-written and informative post......You even remember names of

people

and what they are doing! My mind is total mush....and really, I don't think my

life

is as hard as yours. Moving was the hardest thing I have ever done.....but it

needed

to happen so I could stop working. Being with Jack is stressful enough....could

not

handle caregiving AND working full-time. The hellish experience of moving was

worth it. Maybe in time, you can manage it.......

Hang in there, and it's good to hear from you. Sorry the nh is such a

responsibility

on you. My best to you......Mai-Liis

[Guest guest]

Daryl

I truly wish I could reach out and give you a hug right now. You are so

right, this disease is devasting and overwhelming. I remember in the

beginning of my dads diagnosis, he was oblivious to any problems he was

having. As we sat through each neurologist appt. the dr. would ask dad

if he thought he was having any difficulties talking and dad would

answer no yet the dr could see me in dads shadow shaking my head yes.

He would ask dad if he had any problems walking, of course dad answered

no, with me in the shadows shaking my head yes. This goes on and on.

For now, there are times when dad seems not to really know what is

happening to him, yet for the most part he is aware. In fact I had

something odd happen on a recent visit with him. My dad hadn't been

able to talk much for the last year. I would still interact with him,

and one of the things we would do is put bird seed in a bird feeder that

hangs right outside his window. The last time I took dad out to feed

the birds was summer of 2001. I had the dr. take dad off Ativan, and

start Exelon the first week in February. Well, recently I had dad out

in the regular hallways and he started the conversation of his bird

feeder. He said, " Squirrels are eating out of the bird feeder, remember

the one we put bird seed in? " WOW, thought I had stopped breathing!!!!

All this time I figured his memory was gone, when it seems reality was

he just couldn't communicate to me. This is such a precious memory that

I have stored in my heart, as with this disease and its fluctuations,

life can change so dramatically in such a short time. I wish you well

during this journey with your MIL and may I suggest that you pray as

often as possible. I have found strength in times I thought weren't

possible, and the only thing I attribute it to is prayer. I will say a

prayer for you tonight!!

Sandie

Ds Moines, IA

[Guest guest]

Donna

I am truly hoping your mom has a good day soon so you can leave the

nursing home without crying.......this reminds me of all those times I

have left my dads nh crying. I am so sorry you have to cry!

Sandie

Des Moines, IA

[Guest guest]

Sandie,

Crying doesn't bother me, but I do hope one of these days I can leave

the nh for a bit!

Donna

A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com

[Guest guest]

Mai Liis,

No, I didn't remember all that! I had a pencil and paper and forgot

lots of people along the way. I am working to, but mostly part time. I

don't know how you worked full time and did what you did.

Glad things are better {?} for you.

Donna

A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com

[Guest guest]

Chery,

My experience was very much like yours!

Donna

A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com

[Guest guest]

Donna and -

I just replied to Ev about how interesting it is that there seems to be

some things in common, yet they aren't common with all LBD patients. We

seem to have a split consensus here......either HOT or COLD........go

figure.

Sandie

[Guest guest]

Sandie,

I know there are people like you who are so organized, but paper work is

not my strong point. And getting a name out of the people at this nh is

almost impossible. I am so angry that sometimes I lose perspective.

They give me half answers and by the time I realize what they have done

they are often gone. Or if I ask " Do you know " ..... they say " no, " and

walk away. Director of Nursing has asked me to fill out complaint

forms. Those have gone into a black hole.

And D of N has brought the omnbutsman to my family meetings!!!!!! I

don't still know why. But my guess is he knows her pretty well!

And when I call the state with complaints, the letter 2 months later

came back with " nothing could be verified! "

The nh has answers for everything. True or not. And they will nod

their heads and answer yes, and do nothing.

I tried to get her moved 2 different times, and on paper she looks to

bad for anyone else to accept.

So I hope your experience is better than mine.

Donna

A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com

[Guest guest]

Donna

Wow, I am so sorry to read all of the problems you have been having. I

have noticed though that when I start telling everyone about my

complaint, and I mean everyone, situations get fixed. Also, please

remember you may bring anyone you want to the meetings. I know by

experience those meetings are overwhelming to walk into. Everyone in

the meeting room knows everyone and then there is me. Remember you can

take anyone with you to have the support or someone on your team. Good

luck, and please let me know if I can be of any help!

Sandie

Des Moines, IA

[Guest guest]

Dear Dear Donna,

How I relate to a lot of what you are saying. It is different being a

daughter caring for your parent. The horrors of the NH. The feeding,

incontinent, not trusting the staff to feed them well, missing food on the

tray, etc. Making sure the Meds are given correctly.

I have been soooo depressed. I feel that I have become a prisoner in caring

for my father and I feel so guilty for having those feelings. I am helping my

Mom as well as my dad here, by giving her the noon time break. I am locked in

to this time period five days a week. I cannot accomplish errands in the AM

with time to get to the home by 11:15. When I leave by 1:00 I am out of the

notion to get anything else done. I am Moms only daily support system. I have

been fortunate to have found a job I can do at home. I am an artist for a

ceramic knob company. I bring the product home and return them when I am

done. It is not a lot of money but it is working out at this time of my life.

I can stop and go to the NH and return to my work when I get back. I work on

the average of 40 to 50 hours a week including the weekends. I also have a 3

1/2 year old granddaughter that I care for a lot of the times on the week

ends. I have a 14 1/2 year old dog that tittles on the floor allllll the

time!! Between Dad, McKenna and the dog I feel like that is all I do is

taking care for someone.

Now that I have alll of that out of my system, I feel even greater guilt. I

read about all of these strong people here who have their LO at home 24/7 and

I feel like a peanut!!

There is not a lot of dad left. I think because of the care Mom and I have

given him he has lasted longer then the Dr. predicted Jan. 2001. He told me

dad had 6 months a year if that back then. We have surpassed that plus 3

months. Dad cannot do anything for himself. Three times a week he gets walked

with help from the staff. >>Period.<< He cannot scratch himself or blow his

own nose. The dementia has progressed a lot lately. Fortunately he can still

eat without choking but I fear that I will choke him when I am feeding him

and I could not live with myself if I caused him to choke and get namoniea

(SP).

I am sorry I have gone on and on here. I am not one to post here on a daily

basis but have been so down lately that I needed to blow off some and when I

read your post I thought WOW Donna and I have a lot in common.

Thanks for listening

Debbie, IA.

[Guest guest]

Dear Debbie,

Yes, I can really relate to what you are saying. I make every effort

that my daughter isn't locked into a time like that. I really feel it

is my responsibility and not hers. And it is good to hear your

perspective. She often tells me she feels guilty. And often, I feel

guilty that she has to do this at all. She is more helping me than my

mother.. My mother has been no ones favorite. She hasn't been nice to

lots of people. If it were my Dad, all of us would be more than happy

to do whatever he needed. And I keep trying to tell myself, I am doing

this for him. For whatever reason, he loved her a lot. And he loved me

and my kids and took care of my family in lots of ways after my divorce.

I just keep asking the heavens, what am I suppose to be learning? Let

me learn it and let her go. While she is afraid of dying, {I think} she

has told me she wants out in so many ways including those words, I am

wondering if she will ever let go.

We are not even at the point you and your Mom are at with my Mom's

health. She is only starting to make up words that make no sense and

she gets around in her wheel chair most of the day. And just recently

she blew my daughter away and asked where my son was! She can't feed

herself, but she is aware they don't have very good food. And I think

some of her sense of taste is going.

I like hearing from you and hope you can give me information so I can

help myself and daughter. My daughter is still off of work for the last

4 years to raise her son. But her husband works long hours and I have to

watch Cody while she goes to see Mom.

I know what you mean about the day going and just waiting for lunch and

dinner hours. There really isn't anyone who has it better, 24/7 or not.

When I had her 24/7 at least I had some control. But the wheel chair

won't work in my very small house. And my bath is downstairs. And I

can't lift her. She can still grab the bar in the bath at the nh and

help stand, so I can get her on the toilet. They would never put her

on. And she holds her bladder until I get there. But even that, I have

something going on from lifting her and I have leg and back pain.

This isn't where I expected to be at this time in my life, but here I

am! And I keep wondering if things will ever be " normal " again.

Maybe there is something about " taking care of " that you and I have to

learn? What do you think? Feel free to add my address to your address

book and write when you feel like it. This is one of the things I do

for me.

Donna {Not far away in MI!}

A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com

[Guest guest]

Sandie,

I know I can bring people to those meeting and nothing got fixed as I

discussed the problems. I did hire a mediator/lawyer. That did nothing

but cost me money. That is why I am thinking I have the wrong nh.

They seemed to have the meetings to tell ME what THEY were going to do

and I had better get use to the idea. And their words weren't much

different than that.

And I am still fighting them to see her records. I have durable power

of attorney and they continue to stall me. They asked, " Do you have

guardianship? "

I will see the records. If I have to get an attorney and that all costs

money. And due to other circumstances I won't get guardianship by

choice as it means some other things I am not willing to go through with

step siblings. But it is all a fight and is exhausting.

Donna

A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com

[Guest guest]

Sandie,

The other problem I have is that Mom can't tell what is hot and what is

cold. She was getting her hair washed the other day and kept saying how

" hot " the water was and complained even more as it was turned down for

her. I finally asked her if she meant it was too cold and she said yes!

Donna

A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com

[Guest guest]

Wow....You said it for all of us. Some days are like that for me too. Then

you suffer afterwards feeling guilty. You have to vent to us on days like

that. We will send cyber hugs to get you through. Next time it might be

me! And......... tears are very healing. Bobbie

>

> Reply-To: LBDcaregivers

> Date: Thu, 11 Apr 2002 10:26:18 -0700

> To: <LBDcaregivers >

> Subject: Re: Long time, { LONG email} no say! {See!}

>

> Debbie, please do not waste one minute of your prescious time feeling guilty

> for feelings

> all of struggle with. I have days on which I am strong.....and others when I

> am in a heap

> of tears, frustrated and feeling sorry for myself.....pretty sure we all have

> pretty much the

> same struggles. You are dealing with a lot, and doing a pretty darn good job!

> Mai-Liis....who is having a melt-down day today, hating my LO, hating LBD,

> hating my life.

>

>

>

>

[Guest guest]

Debbie, please do not waste one minute of your prescious time feeling guilty for

feelings

all of struggle with. I have days on which I am strong.....and others when I am

in a heap

of tears, frustrated and feeling sorry for myself.....pretty sure we all have

pretty much the

same struggles. You are dealing with a lot, and doing a pretty darn good job!

Mai-Liis....who is having a melt-down day today, hating my LO, hating LBD,

hating my life.

[Guest guest]

Mai-Liis

These are the days when my heart aches for all the members in this

group. These are the days when I would love to bring everyone to my

house and protect them from the ugliness of this awful disease. Sure

wish I could help you right now. Please know you are in my thoughts and

prayers!

Sandie

Des Moines, IA

P.S. I too have had many of these thoughts and feelings, this seems to

be one thing we all have in common.......go figure.

[Guest guest]

Debbie

At a time when you may be feeling so abnormal with these feelings, might

I add a bright light to your dark days........it seems you are having

feelings that are very normal for a caregiver of LBD. It is ok to have

these feelings. Please don't beat yourself up with the thoughts guilt

when you haven't had any time for yourself. I would like to see that you

have taken care of yourself. We must continue to take care of the

caregiver. I have had you on my mind so much lately, ever since I had

the priveledge of meeting you and your dad. Please let me know if there

is anything I can do for you!!! I will say a special prayer of strength

for you!!!

Sandie

Des Moines, IA

P.S. I have always lived with the theory that " we rob someone of a

blessing if we deny them the chance to help " , please just ask!!!

[Guest guest]

Debbie,

I am so sorry to see you feeling so down, but no wonder. It's hard for all

of us, whether we are at-home caregivers, NH monitors, or relief for other

caregivers. And few of us have the courage to really come out and say just

how much it gets us down sometimes. Like I:

- am depressed

- am angry

- get angry with my LO when I shouldn't

- feel cheated

- am reluctant to ask for help

- think I should be Superwoman/man

- am not

- etc, etc.

Our culture doesn't have much tolerance for this, these realities, but those

who make the rules probably haven't lived the pain. So be proud that you had

the courage to 'fess up to being human, Debbie and Donna and all the rest of

us. I'm not suggesting we become whiners, but we do owe ourselves the right

to legitimate, honest feelings. And where else to do that safely but right

here where we all understand.

Hugs all around,

Cheryl

[Guest guest]

Donna

Making the choice of putting our parent into the NH was the right decision.

We did it on the recommendation of the neurologist. I always went to the Dr.

apts. with them when we started going. I am the realist here. Mom always

sugar coated it all with the Dr. out of denial.

The Dr. told me to be more concerned about my mother now. That there was not

a lot more we could do for dad but make him comfortable. That was over a year

ago.

Mom is an only child. We all live here in the same town. The NH is here in

this town as well. I am the only daughter. I have two brothers who of course

have to work. My oldest brother and his wife do the Sunday Dinner. Mom and I

do the rest. We have to feed dad because we see how the other people are fed

at the NH and with dads weight at 109 he can't afford to get a bite or two

from the staff before they run off to give someone else a bite of food. With

dad and his LB/Parkinsons a lot of the time he will be in what we call his

(Down Mode) bent at the waist, nose to knees at the night meals. Staff will

not take the time to work with him. You never know what Mode he will be in at

any given day or time.

About the food, Mom will take extra food from home that he likes if she

knows what they are having for meals ahead of time.

It was my choice to help my Mom with this. She got to the point in caring for

dad at home where it was wearing on her body and mind. He got to the point

where he could not help her help him when he could not walk any more.

I ask the same question as you Donna, What am I to learn from this? Let Me

learn it

now, Please!

I have learned to be a more compassionate person with the elderly. I have

become friendly with other residents in the NH. Some of them have passed away

after having dad almost two years in the NH. It is like loosing a family

member. They look forward

to seeing you every day. Some of the folks there do not have LO to come see

them at all. It is sooo sad. Another note on learning, I am closer to my dad

now then when I was growing up. With this I am blessed! My brothers cannot

say the same.

Both of my parents are wonderful people and they raised us well. I am here

for them both.

All I can say is THANK You ALL for being here. This is the only sounding

board I have to RELEASE! I have to be the strong one in the family that was

the choice I made.

Debbie,IA