I’m just indulging myself here... I need vent, again.
I had a lovely christmas camping with some of my in-laws.
Then on boxing day went to stay with my parents for a few days. I came home
frazzled, stressed, frustrated, wound up, and undone all the good fun that I
had over the previous few days.
The big thing was the "genetic testing results". I
asked mum if she'd got her results back and she said yes, sounds like it was a
few weeks ago, and she said something along the lines of "you don't need
to worry, if anyones going to "catch it" (alzheimers), it'll be her
brothers, not me and my sister". Which obviously makes no sense. I know
that if it is proven to be genetic, that I have 50% chance as do her
brothers).
So I asked dad. He said "results were
inconclusive", but couldn't give me anymore information than that, and
told me not to worry, it's not worth worrying about". So I asked if I
could read the results, which, of course, he couldn't find. It really upset me.
The only reason she had the genetic testing, was for "our benefit".
It can't help her, she has alzheimers, but it can shed some light for her
children, and her brothers, and perhaps her grandchildren. I don't want to know
if I have the specific genes, but if her results are "not genetic" it
will make a huge difference to my chances, and my childrens chances. Therefore
it would ease the stress on my mind in relation to me and my children.
So, they got the results, and didn't think to ring me, or
post them to me so I could read. I was very clear about wanting to be involved.
I took mum to the geneticist appointment, because I had questions. I understood
the process, and the dr talked to me about possible outcomes, so I was the one
in the loop, but they've completely ignored me when the results came back,
which may well be the best possible results we could have got. Essentially what
dad is trying to say is that it is not genetic. Which should be a load off, but
my dad is known for twisting the story, and lying and making things up, so I
can't ease my mind with the knowledge that it is not genetic, until I read the
paperwork. What he says, has to be taken with a grain of salt. And especially
on a subject matter which he knows nothing about. He has been proven to just
make things up and get the chinese whispers tangled into all sorts of mess.
So, I will ring the hospital and try and get another copy of
the results sent out, but I'm sure I'll be met with a brick wall, because that
geneticist has now changed jobs. I'm so angry and upset. Because she had this
testing for our benefit, and failed to let us, their children know the news
(and if it's good news, that it is not genetic, it would certainly ease my mind
as well as the rest of the family), but we're just left hanging. I'm really
upset by it. This action shows their complete lack of care for anyone but
themselves. Results don't affect her, so just stuff them in a drawer and lose
them. Those results impact the rest of the family in a huge way, but don't
bother to tell us the results.
Then mum tells me that she had a pap smear, and there are
problems, so she has to have more regular pap smears. I said to her, "so
if you were to get cervical cancer, would you treat it?" And she said
"yes, you have to don't you?" This is someone who had been hounding
me and her best friend, to organise euthanasia in the recent past since being
diagnosed with alzheimers and then later, parkinsons. For someone who was so,
totally pro-euthanasia, all her life, to then bother getting pap smears after
these diagnoses. It doesn't make sense. Why would you try and treat cancer, to
then live a long tormented life with alzheimers and parkinsons? Of course, she
may not have cancer at all. But, for me, pap smears would be off the list.
Getting cancer would probably be the silver lining, the easy out so she doesn't
have to be dragged kicking and screaming through the next demented, tortured
few decades.
It may sound harsh, but my mum has put some fairly
unreasonable expectations on me in regard to euthenansia. My dad won't even
speak about it, so she's dumped those responsibilities onto me. I'm the one
expected to somehow ease her suffering when the time comes, even though she
knows that I would have to battle my dad to the death for that to happen, aside
from the legal implications, and the fact that she's signed over all the
responsibilities to him, I'm still expected to try and "sort it out"
when the time comes.
And then, my dear sister, who lives overseas, doesn't even
bother to email, sms, facebook, or ring me for christmas. No, that's fine,
don't worry about me, i'm fine over here dealing with our parents and all their
issues, you relax over there and don't worry about me. Have a merry christmas.
I can tell you, I'm not going to take the higher ground on that one. She's now
had 2 years free from all this stress through the testing, the breakdowns, the
lack of diagnosis, the lack of answers, the depression, diagnosis, then the
next diagnosis. I'm far too busy with my mess of a life than to bother trying
to reach out to her. She doesn't send her only sister, or her only neices a
birthday card or a christmas card. No phone call, nothing. Selfish doesn't even
begin to describe.
Now, I have to try and re-group, get past it and not just
walk away from my family which is what I truly want to do right now. And the
knowledge that this is only the beginning, that this could and probably will,
carry on and continue to deteriorate for decades is torture for me.
Wa wa wa, poor me, i know, but I have to let off steam
somewhere.
