Re: wrong decision? :(

April 22, 2006

Hello Aine,

Are you sure the NH didn't give him something to make sure he " stayed calm "

with the bad news?

So very sorry about your Uncle. Peace, Stevie in California

* * * * * *

Quoting four4ish :

> Hi everyone.

>

first sorry to hear about your uncle.

Second - don't beat yourself up - and don't let the NH. This was not

necessarily

a bad decision.

As you know LBD has it's ups and downs - and this down may have just coincided

with your uncle.

It may also be the new NH - sometimes those issues take a while to kick in or

for something to set it off too.

With these things you just have to let them run the course ... a few days from

now your Dad probably won't even remember any of it ! he might not even

remember the funeral or anything.

Then a few weeks from now he may bring it up again - I think they block what

they don't want to know.

Anywya - don't beat yourself up - you did the right thing.

HUGS

donna

> I booked day off work to take dad to funeral and talked to cousin

> about possible problems with him being there, and we agreed that it

> was dad's brother as much as her father, and dad should be there, and

> we'd all cope between us. So far so good.

>

> That was Thursday evening. But these last couple of days dad has been

> as bad as I've ever seen him. Aggressive, paranoid, stipping in the

> public parts of the NH (he's done that before but not for weeks and

> not since he moved to this new nh just over 4 weeks ago), taking his

> incontinence pad (do you call them Depends?) out, sh***ting all over.

> NH blame me for having told him about the bereavement, say I

> shouldn't have.

>

> Aaaarrrrrghhhhhhh! I was really trying to do what I thought was best,

> and still treated dad with respect and as part of the family. I

> thought I'd made a carefully balanced, well intentioned decision, but

> now it all seems to be going horribly wrong.

>

> Any other experiences of managing things like this?

>

> Áine

April 22, 2006

Quoting four4ish :

> Hi everyone.

>

first sorry to hear about your uncle.

Second - don't beat yourself up - and don't let the NH. This was not

necessarily

a bad decision.

As you know LBD has it's ups and downs - and this down may have just coincided

with your uncle.

It may also be the new NH - sometimes those issues take a while to kick in or

for something to set it off too.

With these things you just have to let them run the course ... a few days from

now your Dad probably won't even remember any of it ! he might not even

remember the funeral or anything.

Then a few weeks from now he may bring it up again - I think they block what

they don't want to know.

Anywya - don't beat yourself up - you did the right thing.

HUGS

donna

> I booked day off work to take dad to funeral and talked to cousin

> about possible problems with him being there, and we agreed that it

> was dad's brother as much as her father, and dad should be there, and

> we'd all cope between us. So far so good.

>

> That was Thursday evening. But these last couple of days dad has been

> as bad as I've ever seen him. Aggressive, paranoid, stipping in the

> public parts of the NH (he's done that before but not for weeks and

> not since he moved to this new nh just over 4 weeks ago), taking his

> incontinence pad (do you call them Depends?) out, sh***ting all over.

> NH blame me for having told him about the bereavement, say I

> shouldn't have.

>

> Aaaarrrrrghhhhhhh! I was really trying to do what I thought was best,

> and still treated dad with respect and as part of the family. I

> thought I'd made a carefully balanced, well intentioned decision, but

> now it all seems to be going horribly wrong.

>

> Any other experiences of managing things like this?

>

> Áine

>

> Welcome to LBDcaregivers.

>

April 22, 2006

You were right to tell your dad about his brother. Sorry for the loss of your

uncle as you

cope with all this. You showed your father respect and you are right, he

deserved to

know. Will he remember? You will find out. I am sorry his behaviour regressed

so

drastically after being informed, but the NH has no business telling you you

were wrong.

I had to debate the end of Dec. whether to tell Mom her boyfriend had died at

age 94 and

felt like you, she had the right to know. She cried, forgot, I reminded her the

next week,

she forgot. I have not mentioned him since nor has she. In her delusional mind

she had

determined he was seeing another woman so had bad feelings towards him which I

could

not alleviate. His ending up incapacitated from a stroke prevented the almost

daily

interactions they had been having so she felt abandoned by him, could not

unerstand

reason.

However, I digress. Had you not told your dad you would feel guilty and want to

constantly share his brother's passing with him, especailly when he asks about

him. You

did right by him.

, Oakville Ont.

Mom 92, 12 1/2 years " Parkinsons "

3 1/2 years ago LBD diagnosis, evident much longer in hindsight.

Encouraged to give up her licence 6 years ago.

Currently immobile, in tilt wheelchair, spoonfed pureed food. Spends most of

days behind

closed eyes.

Eltroxin, Tylenol twice a day.

Off Aricept since Feb./06

>

> Hi everyone.

>

> Feels like everythings happening at once around here. My uncle had

> been ill with cancer for a couple of years and died this week,

> Wednesday. My dad (who has LDB) knew his brother was ill, and kept

> asking about him. I wondered for a while, before my uncle died, what

> I was going to do about telling dad when he did die. I decided I

> should tell dad. It's his brother, he has a right to know. He

> remembers enough to ask about my uncle, and he's still enough part of

> the family for it to be awkward (though not impossible) to conceal the

> death from him.

>

> So the sad news came, and I went to tell dad. I warned the nh staff

> that I need to break bad news and dad might be upset. I took dad to

> his room. I reminded him, just in case he'd forgot, that had

> been ill, and said that he'd died. Dad amazed me .... very calm and

> lucid, said that he knew that we'd been expecting it, and death was

> part of life, but it was awful that his baby brother had gone first.

> We looked at some family photos, talked about the last time dad had

> seen etc. And dad seemed OK, and went off to sit in the lounge.

>

> I booked day off work to take dad to funeral and talked to cousin

> about possible problems with him being there, and we agreed that it

> was dad's brother as much as her father, and dad should be there, and

> we'd all cope between us. So far so good.

>

> That was Thursday evening. But these last couple of days dad has been

> as bad as I've ever seen him. Aggressive, paranoid, stipping in the

> public parts of the NH (he's done that before but not for weeks and

> not since he moved to this new nh just over 4 weeks ago), taking his

> incontinence pad (do you call them Depends?) out, sh***ting all over.

> NH blame me for having told him about the bereavement, say I

> shouldn't have.

>

> Aaaarrrrrghhhhhhh! I was really trying to do what I thought was best,

> and still treated dad with respect and as part of the family. I

> thought I'd made a carefully balanced, well intentioned decision, but

> now it all seems to be going horribly wrong.

>

> Any other experiences of managing things like this?

>

> Áine

>

April 22, 2006

WRONG DECSION NOOOOOO, my dad;s mom passed away in the end of aug 2005, my dad

had extreme difficulty talking to people, could hardly talk on the pohone , and

yet when his mom died i knew i had to tell dad. he knew she was badly hurt from

a fall she had at the hosp in the ct room. they had her, 99 years old, on a

table and the table came out, my grandmother was in pain from gall bladder, and

the nurses/techs didnt come to her immediately after bringing her out of machine

and somehow she rolled off the table and fractured her collar bone , broke her

shoulder as well. she severely bruised her knee, i t swelled 3 times normal size

and required 20 stitches in her head. before this she was able to get around

with a cane or a walker but this made her bedridden, and the died less tahn 1

month later. dad knew she was hurt and he would also ask about her, he would

ask how his mommy was, since i was a kid i called her nanny and up until lbd

took over his mind he called her nanny whenever he was talking about her to me.

i spoke with the asst nursing director and told her the his mom had died, and i

was on my way to tell him, she found us a private place, the beauty salon as

it was closed for nite, for us to tell dad and let him and i talk and reminisce

about her. dad didnt cry, like i thought he would but he was very sad and

withdrawn and whether his bowels or anything altered becuase i told him i cant

say that anything did or didnt but i know shelly the asst dir of nursing was a

sweet heart, she ahd asked my some questionsa about my grandmother and she had

talked to daddy and shared some things i said about my grandomther. as a matter

of fact, he asked shelly if she remembmerd teh thanksigivng that my grandmother

left teh pumpkin pie on the roof of the apt buidling just to go back up to get

it and discover the pigeons had discovered and devoured it. even though shelly

didnt know my grandmother she laughed at dads story and played along with him.

i dont think you did wrong, the only thing i can think of is your dad didtn know

how to deal wtih his grief so his body dealt with it for him either way he

needed to release the emotions and teh nh just didnt want to deal with it,

their problem not yours. hope this helps,hugs sharon a-m

Date: 2006/04/22 Sat PM 04:33:04 EDT

To: LBDcaregivers

Subject: wrong decision?

Hi everyone.

Feels like everythings happening at once around here. My uncle had

been ill with cancer for a couple of years and died this week,

Wednesday. My dad (who has LDB) knew his brother was ill, and kept

asking about him. I wondered for a while, before my uncle died, what

I was going to do about telling dad when he did die. I decided I

should tell dad. It's his brother, he has a right to know. He

remembers enough to ask about my uncle, and he's still enough part of

the family for it to be awkward (though not impossible) to conceal the

death from him.

So the sad news came, and I went to tell dad. I warned the nh staff

that I need to break bad news and dad might be upset. I took dad to

his room. I reminded him, just in case he'd forgot, that had

been ill, and said that he'd died. Dad amazed me .... very calm and

lucid, said that he knew that we'd been expecting it, and death was

part of life, but it was awful that his baby brother had gone first.

We looked at some family photos, talked about the last time dad had

seen etc. And dad seemed OK, and went off to sit in the lounge.

I booked day off work to take dad to funeral and talked to cousin

about possible problems with him being there, and we agreed that it

was dad's brother as much as her father, and dad should be there, and

we'd all cope between us. So far so good.

That was Thursday evening. But these last couple of days dad has been

as bad as I've ever seen him. Aggressive, paranoid, stipping in the

public parts of the NH (he's done that before but not for weeks and

not since he moved to this new nh just over 4 weeks ago), taking his

incontinence pad (do you call them Depends?) out, sh***ting all over.

NH blame me for having told him about the bereavement, say I

shouldn't have.

Aaaarrrrrghhhhhhh! I was really trying to do what I thought was best,

and still treated dad with respect and as part of the family. I

thought I'd made a carefully balanced, well intentioned decision, but

now it all seems to be going horribly wrong.

Any other experiences of managing things like this?

Áine

Welcome to LBDcaregivers.

April 22, 2006

Dear Aine,

What a scene!!!

My opinion, for what it is worth, is that you did the right thing.

You were very careful in presenting the facts.

You warned the NH - they should have expected problems!

You treated your dad with respect and allowed him to mourn his brother.

I'm guessing that your dad has no other way to express his grief.

Such is life in Lewyville!

I'm so sorry that you are getting so much flak.

Please, do not punish yourself.

You did no wrong.

- Kingston, Ontario, Canada

Lo Mum 87(dx Jan. 05) and Dad 92 live with me.

50mg of Seroquel at bedtime only LBD related drug, so far

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

Yahoo! Mail goes everywhere you do. Get it on your phone.

April 22, 2006

Aine - I'd be curious about this too. Your father took the news very

well when you first told him - this reaction is far from that. And

your decision was not wrong - you respected him by giving him the

news - I would have done the same thing, in the your situation. And

my condolences regarding your Uncle.

>

> Hello Aine,

>

> Are you sure the NH didn't give him something to make sure

he " stayed calm "

> with the bad news?

> So very sorry about your Uncle. Peace, Stevie in California

>

> * * * * * *

> Quoting four4ish :

>

> > Hi everyone.

> >

>

> first sorry to hear about your uncle.

>

> Second - don't beat yourself up - and don't let the NH. This was

not

> necessarily

> a bad decision.

>

> As you know LBD has it's ups and downs - and this down may have

just coincided

> with your uncle.

>

> It may also be the new NH - sometimes those issues take a while to

kick in or

> for something to set it off too.

>

> With these things you just have to let them run the course ... a

few days from

> now your Dad probably won't even remember any of it ! he might not

even

> remember the funeral or anything.

>

> Then a few weeks from now he may bring it up again - I think they

block what

> they don't want to know.

>

> Anywya - don't beat yourself up - you did the right thing.

>

> HUGS

>

> donna

>

> > I booked day off work to take dad to funeral and talked to cousin

> > about possible problems with him being there, and we agreed that

it

> > was dad's brother as much as her father, and dad should be there,

and

> > we'd all cope between us. So far so good.

> >

> > That was Thursday evening. But these last couple of days dad has

been

> > as bad as I've ever seen him. Aggressive, paranoid, stipping in

the

> > public parts of the NH (he's done that before but not for weeks

and

> > not since he moved to this new nh just over 4 weeks ago), taking

his

> > incontinence pad (do you call them Depends?) out, sh***ting all

over.

> > NH blame me for having told him about the bereavement, say I

> > shouldn't have.

> >

> > Aaaarrrrrghhhhhhh! I was really trying to do what I thought was

best,

> > and still treated dad with respect and as part of the family. I

> > thought I'd made a carefully balanced, well intentioned decision,

but

> > now it all seems to be going horribly wrong.

> >

> > Any other experiences of managing things like this?

> >

> > Áine

>

April 22, 2006

Cowie wrote:

> You treated your dad with respect and allowed him to mourn his brother.

> I'm guessing that your dad has no other way to express his grief.

I agree with , completely.

This disease takes away enough. To deny those we love of the dignity of

knowing, of being allowed to mourn, is treating them like vegetables.

Even though they can't express themselves, always, in the " appropriate "

way, it doesn't mean they are not entitled to know how the landscape of

their world changes and about what is happening with those they love.

The nursing home was warned. The problems they are dealing with are not

unique to your father. Grief makes many of us react with strong

emotion. You are not at fault in any way, in my opinion, for what

happened. In fact, I applaud you for being willing to continue to

include your father in the life of the family, not exclude him.

jacqui

April 22, 2006

Aine, I am so very sorry. So sorry. I would have done just like you did. I

don't know if it would have been the wise thing to do, but I would have told

him. So, now what have we to learn here? Anyone? I am with Aine on this one.

What to tell and what not to tell??

Imogene

In a message dated 4/22/2006 3:33:25 PM Central Daylight Time,

aine_ann@... writes: