Wednesday, November 28, 2012

After Thanksgiving

One family holiday down, one to go
 I am always envious of people who love these holidays
it used to be fun
today, not so much
my family -- all 24 of us --were together for Thanksgiving
good news:  my dad was ok and enjoyed the evening
bad news:  it was full of stress; lots of competing control freaks;
and the worst is that the next day my dad was in severe pain
too many people around and he was not happy
why don't family members understand that sometimes they are too much?

Tom has been struggling with his sugar this past week
going very low each evening before/during dinner
Here we go again

I seem to remember someone asking me why I don't know more about his dosages
or his machine messages
his machines have been beeping and chiming a lot lately
when I ask what they mean, the answer I seem to always get is:
"my pump needs to be primed"
even though I hear different sounds
I can't get a clear answer
he wants to keep it close to himself
keeps me out

I have to accept it
I learned a long time ago that I have no control
coping is the best I can do
Letting him be in control -- that's his right

 I deal.....
one day at a time

Tuesday, November 20, 2012

Meanwhile... I'm falling apart

Last week, my dad asked his doctor to figure out how to let him die fast
I sat in the room while he talked about not having hope
the pain in his eyes and in my mother's eyes was awful to see

The next day they changed his medications and he is back to his usual optimistic self
certainly not healed - but no longer asking to die

I have been crying buckets at night -- and Tom has been great
But not perfect
he has been having lots of lows
I can't tell you how often -- because I am just too distraught to keep track

I have a large family and we are all trying to deal as best we can
I want to uncharacteristically pull closer
and getting rebuffed
well, not really, but when people don't do what I want them to do
I am feeling like they don't love me
I know that is ridiculous
but its part of my struggle right now
trying to find my place in a world without my dad at its center

as I write that, I realize that at 56 years old, maybe my dad shouldn't be the center of my world
but I have realized that this is how I was raised
My mom put my dad on a pedestal and all of us have honored him all of our lives
I have always felt a special relationship with him
felt like he supported me in a way no one else in the world did
Tom says he thinks that is a valid feeling
that he observed a special relationship with my dad
that we spoke about stuff he didn't discuss with anyone else
not better -- just different -- and very special to me

and even though he is still alive, he is already gone in so many ways
I recognize this may be part of the grief process -- but its miserable
and I don't like feeling as if I'm not whole
like I'm trying to get others to fill a gap that just can't be filled

this was helpful --
tomorrow is another day
we don't know what Thanksgiving will be like
or even whose house it will be in....

we just have to let things play out.....

Thursday, November 8, 2012

He wants to die!

I am unbearably sad
my dad told my mom this morning that he wants to die
he can't stand the pain anymore
This is my dad -- my best friend in the world
yeah, I know
my dad
but still

He has been sick for a long time
and yet...
I can't imagine my world without him
the end may not be today or even this weekend
(he went back into the hospital today)
but it will be soon

I will have to figure out how to deal with it
of course I will
but the pain in my heart is unbelieveable

and yes, I know others have been here
DW just lost her mom -- I'm guessing its similar

if you love someone, hug them today
you don't know what tomorrow will bring

I'm holding Tom tight tonight

Tuesday, November 6, 2012

Another Week.....

So, its election day
I hope everyone voted according to their beliefs

Tom won't provide me with the reports from his monitor
the ones he gave his dietician
but if I had to guess, I would say that his early evening lows are continuing

when asked if he changed his afternoon snack as she suggested
he said no -- he hasn't purchased what he needs
he wants nuts -- despite the other suggestions

I offered to get them for him
no, I'll do it myself
does this sound like a teenager?

he doesn't want dinner before 6:30 or 7
but his glucose gets below 70 by that time
its so frustrating

I do my best
but I have my work too
and since he won't let me help
I can only do what I can do......


challenging life continues

Friday, November 2, 2012

Visit to Dietician

Wednesday evening we went to vote and eat dinner out
it was a very pleasant evening
over dinner, Tom mentioned "our" plans to see the dietician on Thursday

tomorrow?  I have plans
I don't have that on my calendar
he didn't tell me

he was contrite
does he want me to join him?
hem and haw
yes he wants me to go

its early and its inconvenient
but ok
its important

the dietician is great
she knows how to communicate with Tom in a way he understands

but he is so frustrating
he shows her the reports from his monitor

(he never shows them to me!)
he says the numbers are unusual
he still shows dips in glucose during the afternoon/early evening
I say that it is not uncommon

she says that he is still not eating enough carbs
he says he eats "fruit" things
I say they are candy -- gummy's with vitamin C
he complains that he has gained 10 lbs
she and I say that's ok he looks fine and tests show he is healthy

she tells him he needs to add fat and carb to his diet

I wish someone would tell me that!!! :)

don't really know what all of this means -- just noting it all....