Re: Coyote- CAUTION includes some freaky thoughts Ive had...!

[Guest guest]

Coyote:

Let me begin by telling you your freaky thoughts have been my freaky

thoughts for the past 2 weeks or so. What's worse is I'm certain I'm

the only one in my family who is having them. How do I know this?

Well, I overheard my mom telling her sister she's happy just to have

my dad with her. She said she knows he's not well but he's alive and

she came so close to losing him so she knows she's been blessed by

having her with him for a while longer.

Then, last week my sister and I drove the long route to a mall and,

throughout that whole drive, my sister kept repeating that she isn't

ready to lose her dad yet and that she's going to keep fighting the

fight as long as there's something about life from which my dad can

derive pleasure and some joy. She said she didn't think my dad was

suffering as much as I thought he was and enjoyed people coming over

to play cards with him and being with my kids and all of us. For her

that's enough.

Now, don't get me wrong - they're not being selfish. Both of these

people love my dad just as much as I do - they're just reacting to

what's going on in a very different way than I do.

So how do I react? Well, I often can't look at my dad very long

without crying. The right side of his face is often numb because of

the brain tumor and he almost always has one eye tearing up or he's

sweating and feels clammy. In his eyes, while I don't see the

emptiness I detected while he was in hospital, I do see fear or a

lack of understanding re: what is happening to his body. To me,

that's worse than the emptiness. I also notice he sways right and

left when he walks and has to be helped out of and into chairs from

time to time. He is sleeping more than ever and wakes up unsure if

everything is as he left it before he fell asleep. He feels this way

in his own home!!! Yes, he does play cards (my mom plays with him

every night for hours on end to keep his mind from deteriorating

completely and to stop him from sleeping constantly) but he is

embarrassed when he makes mistakes or begins playing another game in

the middle of the one he's already playing. To me, he seems to play

cards just to pass the time. I'd love to say he's truly enjoying it

but he often just appears to be participating rather than really

being engaged in the game. As for my kids, he does seem to enjoy

them (especially my youngest who he and my mom have almost raised as

much as I have in since his birth 4 years ago), but I know he often

becomes tired just watching them and, let's face it, 4 and 6 year old

boys are noisy and that's a bother as well when all you feel up to is

sleeping.

The greatest evidence I have of my dad's feelings about this whole

affair came in a conversation he and I had almost a week ago while we

were driving to my sister's new townhouse. We began talking about a

cousin of his who is very ill and close to death. In the past few

weeks, this man begins cursing at the television anytime a commercial

for a funeral home or pre=paid funeral arrangements is played. I

commented on how this may be attributed to the fact that death is

something he fears especially since he knows it's inevitable and

coming quick for him personally. My dad turned to me very clearly

and said, " I am not afraid of death. Not at all. " I questioned him

further and he said once more, " I'm not afraid of death - not at

all. You have to believe me when I say this. But I am afraid of

suffering and being a burden to my family because you guys will carry

that burden and I wouldn't want that for my family. In my opinion,

death isn't the worse thing that can happen to a person. " He said

that to me verbatim. I think he's pretty clear about his own

feelings.

I've used his " Death isn't the worse thing that can happen to a

person " often since then and even on this board because I believe

what he said is so very true.

Judging what awaits my dad (and your dad) if this thing progresses

any further I don't want my dad to lose anymore to this beast. I

can't stand to see my dad raise a shaky hand to his forehead to wipe

the sweat away. I don't want my dad to become fearful of why this is

happening to him or to become consumed by irrational hallucinations

anymore. I don't want that for him because he's suffering.

I know a lot of people on this board have LOs who do still have

quality in their lives but if my dad continues to decline and if he

has to live with a brain tumor on top of it all, death would be a

blessing.

I've said it and I know people will disagree. Perhaps even I will

look back on this post and categorically deny I was in my right mind

when I posted it but I feel that way today and, in the future, if I

remember how sick my dad is now I don't imagine my opinion will

change.

So Coyote, after a long rant, I don't think less of you for having

these thoughts. If I did I'd be a hypocrite.

Abby

[Guest guest]

Abby,

Thank you so much for your post, which validated my own feelings.

Maybe we are the only 2 who think this way, but that's ok with me.

The reality is we love our Dad's just as much as anyone else loves

their LO with LBD. I dont in any way judge your sister or your Mom

or anyone for feeling differently. I think we all have a right to

feel whatever we feel...it's all felt out of love for this person

and our own personal mechanisms for coping. I guess we just have to

accept is as that and leave it alone.

By the way, thank you so very much for sharing that conversation

with your father verbatim. I think what he said is beautiful and so,

so true. Death is not the worst thing that can happen....

Love, Coyote

> Coyote:

>

> Let me begin by telling you your freaky thoughts have been my

freaky

> thoughts for the past 2 weeks or so. What's worse is I'm certain

I'm

> the only one in my family who is having them. How do I know

this?

>

> Well, I overheard my mom telling her sister she's happy just to

have

> my dad with her. She said she knows he's not well but he's alive

and

> she came so close to losing him so she knows she's been blessed by

> having her with him for a while longer.

>

> Then, last week my sister and I drove the long route to a mall

and,

> throughout that whole drive, my sister kept repeating that she

isn't

> ready to lose her dad yet and that she's going to keep fighting

the

> fight as long as there's something about life from which my dad

can

> derive pleasure and some joy. She said she didn't think my dad

was

> suffering as much as I thought he was and enjoyed people coming

over

> to play cards with him and being with my kids and all of us. For

her

> that's enough.

>

> Now, don't get me wrong - they're not being selfish. Both of

these

> people love my dad just as much as I do - they're just reacting to

> what's going on in a very different way than I do.

>

> So how do I react? Well, I often can't look at my dad very long

> without crying. The right side of his face is often numb because

of

> the brain tumor and he almost always has one eye tearing up or

he's

> sweating and feels clammy. In his eyes, while I don't see the

> emptiness I detected while he was in hospital, I do see fear or a

> lack of understanding re: what is happening to his body. To me,

> that's worse than the emptiness. I also notice he sways right and

> left when he walks and has to be helped out of and into chairs

from

> time to time. He is sleeping more than ever and wakes up unsure

if

> everything is as he left it before he fell asleep. He feels this

way

> in his own home!!! Yes, he does play cards (my mom plays with him

> every night for hours on end to keep his mind from deteriorating

> completely and to stop him from sleeping constantly) but he is

> embarrassed when he makes mistakes or begins playing another game

in

> the middle of the one he's already playing. To me, he seems to

play

> cards just to pass the time. I'd love to say he's truly enjoying

it

> but he often just appears to be participating rather than really

> being engaged in the game. As for my kids, he does seem to enjoy

> them (especially my youngest who he and my mom have almost raised

as

> much as I have in since his birth 4 years ago), but I know he

often

> becomes tired just watching them and, let's face it, 4 and 6 year

old

> boys are noisy and that's a bother as well when all you feel up to

is

> sleeping.

>

> The greatest evidence I have of my dad's feelings about this whole

> affair came in a conversation he and I had almost a week ago while

we

> were driving to my sister's new townhouse. We began talking about

a

> cousin of his who is very ill and close to death. In the past few

> weeks, this man begins cursing at the television anytime a

commercial

> for a funeral home or pre=paid funeral arrangements is played. I

> commented on how this may be attributed to the fact that death is

> something he fears especially since he knows it's inevitable and

> coming quick for him personally. My dad turned to me very clearly

> and said, " I am not afraid of death. Not at all. " I questioned

him

> further and he said once more, " I'm not afraid of death - not at

> all. You have to believe me when I say this. But I am afraid of

> suffering and being a burden to my family because you guys will

carry

> that burden and I wouldn't want that for my family. In my

opinion,

> death isn't the worse thing that can happen to a person. " He said

> that to me verbatim. I think he's pretty clear about his own

> feelings.

>

> I've used his " Death isn't the worse thing that can happen to a

> person " often since then and even on this board because I believe

> what he said is so very true.

>

> Judging what awaits my dad (and your dad) if this thing progresses

> any further I don't want my dad to lose anymore to this beast. I

> can't stand to see my dad raise a shaky hand to his forehead to

wipe

> the sweat away. I don't want my dad to become fearful of why this

is

> happening to him or to become consumed by irrational

hallucinations

> anymore. I don't want that for him because he's suffering.

>

> I know a lot of people on this board have LOs who do still have

> quality in their lives but if my dad continues to decline and if

he

> has to live with a brain tumor on top of it all, death would be a

> blessing.

>

> I've said it and I know people will disagree. Perhaps even I will

> look back on this post and categorically deny I was in my right

mind

> when I posted it but I feel that way today and, in the future, if

I

> remember how sick my dad is now I don't imagine my opinion will

> change.

>

> So Coyote, after a long rant, I don't think less of you for having

> these thoughts. If I did I'd be a hypocrite.

>

> Abby