I'm feeling the effects, my mother is here this week suffering from
alzheimers (sp?) but dealing with a juvenile huntington's daughter, in
some cases I have two. My daughter does well most of the times, has
never drove, never had to take away things because she hasn't had the
opportunity to have them to begin with. I'm taking care of both of them
this week, I don't think my brothers n sisters realize what it's like to
have one let alone two and I'm really worn out and it's barely Tuesday
(late Monday night). I love them both and I see what loosing things are
to Mom and I feel for not ever having them to loose is for my daughter
but in either case it can be stressing to try and manage purchases for
my daughter since even if she can afford it she freaks out and then
added on my mother wanting me to help her figure out how she can live a
lone, my brain is going a hundred miles an hour this week. I love them
both dearly, I am honored to have them. It's enough to handle one but
not two, I'm afraid that I'll be doing this for the rest of my life, I
have one more adult at risk, her brother and her son who is 7. I don't
know how families last. I married into this and he committed suicided
so being a not at risk alone parent, I love my kids and hate the disease
like all of those who stick with it. Out of all the kids my x's family
had, I was chosen so far, I'm feeling pretty crappy, selected, isolated
at this moment. It is wrong to feel that everyone in the immediate
family didn't get it and yet out of everyone we got picked to hand it
down to a juvenile. Ok, ya I'm feeling sorry for myslelf, she is a
great trouper, I would just write an x if I were her but she continues
to sign her name no matter how long it takes.


Blowing off steam,
Thanks
Kelly

Kellysue1@...

-----Original Message-----
From: nelson1344 [mailto:Nelson1344@...]
Sent: Monday, October 18, 2004 9:06 PM
To: huntingtonsdiseasesupportclub@yahoogroups.com
Subject: [Huntingtons Disease Support Club] Re: Feeling confused


Hi Cassandra, I'm sorry about your loss of your mother. I know that's
really a tough thing to go thru.
I remember when my sister died in 1978, I said I wasn't sorry that she
died (because she was in such bad shape) but I was sorry that she
couldn't LIVE (meaning free of HD). It's true that people don't
really understand what you are going thru unless they are familar with
HD. Lots of folks here do truly understand, so feel free to vent and
chat and e-mail whenever you need someone to talk to.
I'm in Alabama but I think this board has folks just about nationwide.
Keep your chin up and know that you've got friends here.
Rachel



--- In huntingtonsdiseasesupportclub@yahoogroups.com, "cassandra"
<cassandraskil1@h...> wrote:
>
>
> I am a new member. My mom had Huntingtons Disease and she just died
> two weeks ago today. She was 49 years old. I was diagnosed in 1998
at
> the age of 23. I know that my mother was suffering and that she has
> been sick for a long time. With something like this, it isn't a
shock
> when they go. It is sometimes a little difficult to look your
future
> in the face, though. I don't really have anyone to talk to about
it.
> Nobody really understands. I don't expect them to unless they have
> grown up with this Disease as I have. I am glad that I found this
> support group. I think that it is exactly what I have been needing.







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