Re: I still have questions...

[Guest guest]

OH GOD! Did we do this to her?!?!

" Risk factors include any injury to the brain for any reason. This

includes trauma, stroke, brain tumors, infections (such as meningitis),

or prior brain surgery. "

Did mom's brain biopsy that we had done to her in Feb. do this??

GOD I hope not!

[Guest guest]

,

I don't think you should second guess anything. Whatever you did for your mom

you did it with the best knowledge and desires for her well being. You were a

wonderful and caring daughter and I know she lived a lot longer and had a better

life because of you. There are so many elderly people forgotten in their homes

and NHs that have no one to care about them. You did so much for your mother.

Because we care so much for our LOs I know its easy to wonder if the decisions

we made was right or if we had only done something else. Remember, we don't

have the power of life and death and realize it was time. Her final years were

so much better because of your love and care.

Vallerie

[Guest guest]

,

Even if we think that we have prepared ourselves: the loss of a loved one

doesn't become easier. Knowing that they have a terminal disease doesn't even

seem to prepare us. At least for me and my siblings.. none of us were really

prepared for her passing .

I am betting that most of us, tend to second guess ourselves, on what could

we have done differently.

For Example, Yesterday, Sunday morning, I was talking on the phone with my

sister and grief welled up inside: I choked up.

Yesterday was the day, several years back that we buried my dad.

Unintentionally, I drove by the cemetary on the way up to Minnesota. I got to

thinkng of my LBD mother shivering at dad's grave side, on that freezing

October day.

Mom's health crashed in two months time after Dad's passing. The doctor kept

raising the Sinemet and Requip dosage. The higher dosage gave her nausia and

" the dizzies " and she started falling frequently.

If I had only changed doctors immediately ....

Still, I can be greatful that we finally did change doctors, and medicines.

Mom had a much higher quality of life during her last 6 months.

****

So, as best as we can, we really need to celebrate the good days, and

remember the best days. Naranja !

Dann: caregiver for Marge , who changed from a relatively young person

of 77 to become a very frail old person at 80. She died 8-12-05

[Guest guest]

Hi ,

As you said in your previous post, you will likely never know what happened with

your

mom. Please don't beat yourself up over this. We all suffer the what ifs and

can't let them

take over. It sounds like there was quite a combination of factors involving

your mother's

demise and personally, I would put the seizuring down to imbalance from kidney

shutdown, if in fact that was happening, or to the LBD response to whatever was

happening to her internally. The throwing up of blood is significant too,

seemingly

unrelated. Just be glad she went so quickly and didn't have to suffer the

lingering end of

life so many of our los do. You will remember her as funny, witty,

communicative,

enjoying you and your visits. I am having to dig way past the prolonged end of

life stages

to remember my mother any other way. So sad.

Your mother's old colleague will find a real treasure in your knowledgeable and

loyal

support should she accept your offer. Please pace yourself. I can't seem to

find me out

there either, but then it's only been 2 months.

, Oakville Ont.

Mother, age 92, died Aug. 12/06 after 13 year decline from PDD

>

> OH GOD! Did we do this to her?!?!

>

> " Risk factors include any injury to the brain for any reason. This

> includes trauma, stroke, brain tumors, infections (such as meningitis),

> or prior brain surgery. "

>

> Did mom's brain biopsy that we had done to her in Feb. do this??

>

> GOD I hope not!

>

>

>

[Guest guest]

OH Darling , Please not to worry. You did not do that to her. We all

use the medical field to help our loved ones. She was sick. Please dear one

don't feel like you did something wrong. You didn't.

Love so much,

Imogene

In a message dated 10/9/2006 8:26:02 AM Central Daylight Time,

octoryrose@... writes:

OH GOD! Did we do this to her?!?!

" Risk factors include any injury to the brain for any reason. This

includes trauma, stroke, brain tumors, infections (such as meningitis),

or prior brain surgery. "

Did mom's brain biopsy that we had done to her in Feb. do this??

GOD I hope not!

[Guest guest]

,

I wish I could help you feel better. You will ask yourself a hundred questions.

And you can answer them yes and no and it still won't help. You would need to

know we all do the best we can with the knowledge we have and that is what you

did.

Your intent was always to help her as was demonstrated to me by the messages you

sent. You (and the rest of us) all have to depend on MDs and their training.

And the NHs and what they do and don't do.

You can go and try to find out why and you still won't know. Please don't

second guess yourself. Any more than which drugs can and can't any one patient

tolerate, there just aren't any absolute answers. That is why I stay and share

with other caregivers. If it helps one other, that is the best I can do.

If I had said to you before her brain surgery, " , this is going to cause

her death, " (and I couldn't because I didn't know) would you have done it? My

guess is no. But if the opposite story was told you, if you don't do it you

would miss a diagnosis, would you have not done it.

Problem no one knows enough. And hind sight is so much easier to second guess

yourself about.

Whatever you did, you did with love. And this was her road in life.

You are grieving and it is so difficult this first year. And this is just part

of the grieving.

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.

Re: I still have questions...

OH GOD! Did we do this to her?!?!

" Risk factors include any injury to the brain for any reason. This

includes trauma, stroke, brain tumors, infections (such as meningitis),

or prior brain surgery. "

Did mom's brain biopsy that we had done to her in Feb. do this??

GOD I hope not!

[Guest guest]

Thanks everybody for your responses... It's that Catholic guilt

overcoming me again... But please know that I DO know I did

everything I could, I DO know that mom was grateful, I DO know that

there was nothing I could personally do to prevent those seizures,

and I DO know that mom's end of life was better b/c of my efforts...

I'm leaning towards the kidneys bringing on those seizures.. Could be

wrong - but it doesn't make any difference anyway - but had it been

the kidneys, there wasn't anything we could have done anyway --

especially if it was acute failure...

Again, thank you for your sympathic responses.

Now (b/c, like mom, I always have to be doing something, I'll focus

my efforts to the charity auction I'm apart of - that raises money

for 4 local children's charities) Here's our online auction site:

www.cheersforchildren.cmarket.com Also, will go ahead and call that

friend of mom's to break the news and to let her know that I'm

available should she need help in moving...

[Guest guest]

: Did you have an autopsy done to determine

cause of death? I didn't remember if she is in any of

the medical studies that will do the brain autopsy for

no charge. I know, if I'm still alive, that my

husband will have an autopsy unless the cause of death

is unquestionable. His brain tissue will go to the U

of Indiana for our family dna testing, and I have

checked to see that the " trunk " autopsy can be ordered

at the time of death. If there is any question about

it, I will have it done. Around $500, but one of the

things I am concerned about with him is the misuse of

medicine, and it there is any possibility that meds

could have contributed, I want to know.

Also, now they are determining that Lewy Bodies are

found in other areas of the body as well as the brain,

for instance, the intestines.

Also, you need feel no guilt. Didn't the doctor

recommend the brain biopsy to you?

--- wrote:

> Thanks everybody for your responses... It's that

> Catholic guilt

> overcoming me again... But please know that I DO

> know I did

> everything I could, I DO know that mom was grateful,

> I DO know that

> there was nothing I could personally do to prevent

> those seizures,

> and I DO know that mom's end of life was better b/c

> of my efforts...

>

> I'm leaning towards the kidneys bringing on those

> seizures.. Could be

> wrong - but it doesn't make any difference anyway -

> but had it been

> the kidneys, there wasn't anything we could have

> done anyway --

> especially if it was acute failure...

>

> Again, thank you for your sympathic responses.

>

> Now (b/c, like mom, I always have to be doing

> something, I'll focus

> my efforts to the charity auction I'm apart of -

> that raises money

> for 4 local children's charities) Here's our online

> auction site:

> www.cheersforchildren.cmarket.com Also, will go

> ahead and call that

> friend of mom's to break the news and to let her

> know that I'm

> available should she need help in moving...

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

No autopsy. I had thought about donating mom's brain to a brain bank.

But never followed up - nor brought it up to her sisters or my sister.

After she passed no one brought up an autopsy until I did the next day -

- asking if they'd be doing one, or if they'll ask to do one. My aunt

said that we would have had to ask for an autopsy if we wanted one, and

her response was that we knew it was lewy body b/c of the biopsy and

everyone just wanted it all to end -- the suffering. So, I didn't bring

it up again.

[Guest guest]

Dear ,

So sorry that you have to go through these different, difficult emotions, but,

apparently

they are neccessary to recover from losing a loved one. My thouhts and prayers

are with

you daily.

The subject of autopsy is never pleasant and actually must be planned well in

advance of

the passing date. As I found out with Mr. B, the same goes with donating the

brain.

Arrangements must be made, papers signed, stamped and delivered, and then

immediate

actions must be taken within minutes of death. Not a pleasant thing to deal

with, but very

necessary to preserve " evidence " .

I ended up donating a patch of Mr. B's hair---the mortuary gallantly accomodated

my

wishes with the process---and recommend to everyone on this website to at least

do the

same. I'm so sorry that I have not kept up with heralding this option in time

for the recent

passings of LO's with LBD, but have been prompted by your emails that brought

back

those " desparate " feelings of guilt, didn't-do-enough, shoulda/coulda/woulda

feelings

and sleepless nights of " if only " .

(Sandie and Donna...I found the papers that the Lab in Florida sent me (Brain

Endowment

Bank Donor Registration Form), that I had so carefully set aside after Mr. B

passed and still

need an address to send them to, so others on the website can consider this

option to

help in the LBD research.)

Bless you and know that you have done a wonderful job taking care of

your

Mother.

Much love, prayers and Peace to you,

Stevie

***Caregiver for Mr. B since dx with Parkinson's in 1993, dx with LBD in 2003,

passed July

6, 2006 in my home.***

* * * * *

> No autopsy. I had thought about donating mom's brain to a brain bank.

> But never followed up - nor brought it up to her sisters or my sister.

> After she passed no one brought up an autopsy until I did the next day -

> - asking if they'd be doing one, or if they'll ask to do one. My aunt

> said that we would have had to ask for an autopsy if we wanted one, and

> her response was that we knew it was lewy body b/c of the biopsy and

> everyone just wanted it all to end -- the suffering. So, I didn't bring

> it up again.

>

[Guest guest]

I had forgotten about your previous biopsy, so that

wouldn't have accomplished anything as far as the LBD.

--- wrote:

> No autopsy. I had thought about donating mom's brain

> to a brain bank.

> But never followed up - nor brought it up to her

> sisters or my sister.

> After she passed no one brought up an autopsy until

> I did the next day -

> - asking if they'd be doing one, or if they'll ask

> to do one. My aunt

> said that we would have had to ask for an autopsy if

> we wanted one, and

> her response was that we knew it was lewy body b/c

> of the biopsy and

> everyone just wanted it all to end -- the suffering.

> So, I didn't bring

> it up again.

>

>

>

>

__________________________________________________