johnrock88@msn.com (john

I have been a long time and infrequent poster.

My father passed a way on June 7th at 8:55PM from "Pneumonia caused by
Dementia". The family (his children, wife, brother and sister) had a
bedside
vigil for 5 days before he passed away, we saw it coming. I am glad
to see he
passed with a room full of people who loved him. I watched my father
basically
drown to death and take his last breathe. No matter what anyone says,
death is
never peaceful.

Through his 10+ year ordeal, I have been there, seen all the steps and
downgrades. Was there when he no longer was able to sign his name,
then unable
to drive, unable to feed him self, able to recognize me, incontinent
and finally
unable to walk or talk and everything in between. I helped wash him
feed him
and clothe him. I am the youngest (34) of 3 boys and I did the
majority of the
care.

We took care of him at home, he never spent a night away from home.
The family
and myself made a lot of sacrifices for his care. I lost a lot during
that
time.

Lost most of my friends. (When they ask you to go out and you keep on
saying no, sooner or later they stop asking an become distant.)

Stayed at a dead end job, in order to work nearby and have a flexible
schedule for necessary care.

Went through and still fighting depression.

I might sound bitter. I probably am bitter, but I will do it again in
a heart
beat.

I guess the worst thing I lost is my faith in GOD. I started to look
around me
and seeing the misery in the world and thought if there is a God, then
why
doesn't he make it a better. Some people say we have free will, but my
father
didn't want Alzheimer?s. I lost all my faith and eventually I started
hating
God, In my father?s final hours, where he was gurgling, drowning I
went outside
and screamed internally "You bastard, why don't you let him go!".

I lost any love I had for a higher being.

I was wondering, how has this disease affected your faith? I know
hardship
brings some people closer to God, but for me it did the reverse.

Thanks for letting me ramble on, I thing this is part of the healing
process.
The tough part now begins, where I have to start my live anew at 34
years of
age. Thinking of changing careers from an engineering field to
nursing.


John

trish knight

John,
Just want you to know that all you are feeling is perfectly normal and, IMO,
expected. Also, please know that the anger you feel towards God -- He
understands and can handle it. He's much bigger than your anger. I'm not a
"religious" person, certainly not in any legalistic way; but I do love God and
have a wonderful relationship with Him. I think our faith is always the first
and constant thing that is tested when our loved ones are sick. One of my
best friends died on Sept. 11, last year -- suffering horribly from cancer.
My other best friend's husband has a rare brain degenerative disorder called
MLD. It's so hard to watch those you love suffer. I'll be praying for you.
And I think your change in careers is a good thing.

Trish

robert e. lewis

John, my sympathies. My sympathies both on the loss of your father and on
the years 'lost' to caregiving (not lost in the sense of wasted, but lost in
that it's a major chunk of life spent not as you'd have planned or hoped).


I understand that. At 39, I'm just at the beginning of the ordeal of my
father's dementia (though I have nursed him through several serious health
crises in recent years). I'm self-employed at work that pays poorly and is
otherwise unrewarding and unpromising for exactly the same reasons - to be
available when I'm needed. I feel as though I'm basically on-call 24/7 for
a second job. I've recently had the opportunity of a romantic relationship
with great promise, with someone who cares enough to uproot and move to be
closer - and I'm unable to say when I will be free to commit, or even how
much I will be available in the next months and years. It's enough to make
anyone bitter, but I'd do it again, too.

I read a book years ago, a book written in the 1920s, I think, laying out
the movement of Man's spiritual ideas from a belief in magic through
religion into philosophy. The author, F.M. Cornford, presented an ancient
Greek concept of Fate that is very different from either the idea of
complete free will on the one hand or the railroad track sort of
predestination at the other extreme. The old Greeks compared one's fate not
to a path but to a set of boundaries defining a shepherd's allotment - our
'free will' is only the freedom to work within our allotment, and each
person's unique allotment is a matter of Natural Law even the Gods must
obey.

I lost all my faith and eventually I started hating

Some people say there's virtue and spiritual learning to be found in
suffering. And there may be, for some kinds of suffering. But I watched
two grandmothers and a dear friend die in much the way you describe, and
though all three were very strong in their religious faith, I never saw any
sign they were gaining from the awful suffering at the last.


Good luck.

--
Robert

mary_gordon@tvo.org (mary

John, if you haven't already read it, I really recommend the book by


extremely rare genetic premature aging disease. Beyond parental agony
and guilt, he also had to grapple with his relationship with God -
because he was so angry – how could God let something like that
happen, let an innocent suffer? He was also leader of a congregation,
and often supported and councelled people in distress, so he really
had to rethink his attitudes and the kind of things we in
Judeo-Christrian tradition think and say to ourselves and others when
in distress, and the way we look at God. It is a wonderful, wonderful
book, and really had resonance for me - I found it very helpful, and
it essentially mirrors the way I now look at God.

You can get it on Amazon
http://www.amazon.com/exec/obidos/tg...26528?v=glance

Here are one person's notes on notes on the book which will give you a
feel for the contents.
http://www.gurus.com/dougdeb/Courses/bestsellers/Kushner/BTmain.htm

Mary G.