lost of sister more than sibling
soulguardian
My sister had autism, I was her legal guardian. She died suddenly in
a tragic episode with a caregiver one month ago. I was not alone in
believing that this was an extraordinary woman who touched many in
extraordinary ways. As her
epithet read, "Oh, how we loved you, and you brought to us the face of
God." She was my greatest gift. I am not only dealing with the loss
of my first great love in my life - she opened my heart to love and
completely changed my life - I am also dealing with the trauma and
anger at the way that she died. A reckless neglect by a caregiver who
knew her perhaps too well and broke all the health and safety rules we
had set down to protect my sister. (2:1 staffing, strict guidelines
when in a vehicle, monitoring pace of eating at all times) - she
choked on a chicken mcnugget while this caregiver handed it to her
while driving. And my sister had to have all her food cut up into
small pieces to avoid choking. And the caregiver lied first claiming
amnesia, then saying it was tiny bits of french fries, until the e.r.
docs said that was b.s. and he finally fessed up.
Anyway, I'm swinging back and forth from feeling dead from the grief,
anger from the preventability of it all, loss of 1/2-2/3 of my time
either advocating for her in endless meetings, proposals, creating
support and health and safety plans, and the constant love and worry
about her when her supports were thin. Since I became her guardian in
1994 and got her out of a locked institution to live in the community,
I've had to work on contract and flexible jobs because of the amount
of advocating and time it took to attend to her needs. A small price
for what she gave me in return. I'm 54 and never had children and
always felt that I did not so that I could be available in a bigger
plan to partner with my sister in creating a better life (for us
both)
I've lost my sister, I've lost my main life purpose job. My heart is
broken.
I'm raw, it's new - I dealt with grief when my mother died in 2001,
but that pales in comparison. I have a wonderful husband of 7 years
that has stood by my in every way, but he can't help and I've found
myself lashing out at him in ways that was never part of our
relationship. That really scares me.
It feels like I've lost a child - she was my "soul child". It feels
like I lost my best and favorite friend. It feels like I've lost the
greatest gift of my life that became one of my most important life
purposes.
My gut tells me that I should start by getting some individual
counseling, but having a hard time finding someone with legit
experience in grief and bereavement.
Any advice appreciated.
thank you,
S.G.
Daniel
I am so sorry about your loss of your sister. Such a sudden and
tragic loss carries some extra "issues" (or at least extra-magnified
ones) for you to work through. One month is not much time. Barely
time for the reality to sink in, the numb of shock to begin to melt
away. And as your feelings return, all the feelings are hurting.
I bet everything reminds you of her. Every time of day, every idle
moment you have now, must be full of what would have been on a normal
day before her death.
It sounds like you are an exceptional sister, a true "soul guardian"
who made life happy for her the best you could. You didn't want this.
You didn't ask or prepare for this.
Particularly hard for you, I would think, is that this leaves you with
some "free" time each day -- time you didn't want -- and then there's
kind of nothing in that void time but you and the grief beast. After
my dad died of cancer in 2005, I suddenly had these things called
evenings and weekends -- and there it was, just me andthe beast. I
felt like I had to deal with it all at once, tackle this huge monster
and all the issues and all the hurt all at once. But we don't have to
do anything big or all-at-once. Really the process is less like
slaying a dragon and more like eating a really big ham: you don't sit
down and eat a whole ham, you whittle off what you can a bit at a time
and save the rest for later until some day you're just down to soup
bones. Grief is like that. There are still tons of things I am
deferring after losing Dad -- some physical (piles of his stuff) and
some emotional.
I would say concentrate on taking care of yourself for now -- being
kind to yourself during those 'extra' hours in your week. I will
re-post separately some ideas on taking care of yourself.
Know that you are not alone. This group has been pretty quiet lately
but many still read. I think many will be praying for you too, who
may not say so in a post.
Peace,
--
Daniel ( deltae...@usa.net )
donna
thank you for writing to us. i understand your feeling of 'raw',
although now, exactly 800 days after losing my daughter i am forming a
crust on top of the pain.
like the loss of your beloved 'soul child', my savannah's death was
totally preventable. doctors simply overlooked her congenital heart
defect. it is so difficult to fathom that such small things can lead
to the death of those we love so much.
for months after she died, i would walk my house at night in the dark,
searching for some sign of her. i smelled her clothes, willing myself
to be with her. i still check her email, her cell phone is still
operational, her toothbrush hangs in our bathroom.
i don't have much advice on the how's of grief. each of us are
different and our pain takes a lot of paths. i do know that each day
you stay alive to honor your exceptional sister is a day you are
victorious over death itself.
in deepest sorrow,
donna