day 63 Hospice begins

Hospice begins

Which is not as serious as it may sound.
Preliminary hospice is different from regular homecare
because they focus on the patient differently
They are concerned for Dad's comfort
not keeping him alive

Despite a whole lot of problems working against him
physically dad could go either way.
He often has a low fever
he is being fed through a tube
He gets insulin shots
and
blood thinner shots

It's a horrible experience. We have a little sort a cel-phone looking device
you turn it on and insert a little... computer stick?
It beeps.
You then prepare the weapon.
this is a small disposable needle
locked into a kinda plastic tube
you load the tube like a gun
you choose a finger
and clean it with alcohol.
Then you turn on the little cel-phone thingy
pull back the skin on the finger
and fire the needle into the taught skin.
Hopefully, if you do it correctly (which for me is about every 3rd try)
you draw blood
quickly you have to drip the blood onto the stick that is sticking out of the cel-phone
8 seconds later it reads the sugar in my dad's blood.
I then have a chart which I use to measure how much insulin I should give him.

It is not fun pricking your father
it is less fun jabbing him with needles

I freaked out yesterday
really really freaked.

now that he is back
I can't leave
right now there is no one willing to do the work
and you have to check him every few hours for the insulin
and give him the blood thinner twice a day
and my mother even fears the stomach tube.

It's all me
and I can't handle that

I feel so guilty
lonely
horrible
tired tired tired
and guilty again
I don't sleep well
Im not eating properly
and I am the only one who talks to all the nurses/insurance people/doctors/pharmacists because my mom doesn't understand it and my sister is usually working
AND THEN
my mother looks at me and asks
"what should we do?"
"Is he ok?"
"Did you remember to secure the bed?"
Its the only topic of conversation around here
and I am the only one everyone looks to for answers

my mother just asked me, 'Will he be able to use the chair again?"

1st. i don't know
2nd I don't want him to anyway
3rd Do you realize, mom. That if we did want to put him in the chair... it would be ME putting him there?

so there is where the guilt comes in.
Yes, maybe its 50% selfish
I do not want to (on top of all the other things I am doing) to have to get him out of bed and into the chair.
It was bad enough before he went into the hospital.
Now he does nothing to help
nothing because he is NOT there

and this is just 1 minor tiny miniscule guilty feeling
there are so many others

my cousin said to me... You should be changing your father's position every few hours."
I said, "Yes. Yes, I do."
She said, "So, you get up in the night?"

she wasn't being mean... just sort of assuming I did. No, I don't. I DON"T GET UP OK. I don't WANT TO and WILL NOT. And it was just a comment she made. nothing accusatory about it at all. It is I who accuse myself.
and it has only been 4 days

day 62

i really can't write tonight.


I....

I can't.

I will tomorrow. Sorry... I feel like I'm...
being....

I just can't. Ill explain tomorrow... many of you have been very faithful lately and I don't want to let you down but...
I can't

day 61

My sister and I talked today
about how we saw things

her daughters refuse to visit now (younger niece came over yesterday and went home almost right away.)
they are too afraid to see grandpa like this.
My sister understands. She said that she doesn't want their last memory of grandpa to be someone who strains for every breath and has mucus coming out of his mouth (she didn't say this... its just my interpretation)

We do not think Dad has long except that it's hard to tell

Even my mother, over a shared hour puzzle making, told my sister, "I don't think your father would have wanted to live like this."

We are all coming around... but like I said... it's so hard to discern whether he is near the end
or if he could last like this
for months and months

should he last that long?

My sister said
"taking away the stomach peg would be like murder. We would stop feeding him and that is the same as killing him. But... if he needed a machine to breath or keep his heart beating.... than there is no point to that."

I don't know how I feel about it.
He taught me to ride a bike
he didn't teach me to drive because on his first attempt to do so, I stopped the car and screamed, "Forget it!" and got out to walk home!
I have so many conflicted feelings were he is concerned I never know exactly what it is I am feeling.
But I think... I say... take him off the stomach peg
and feed him ice cream through his mouth
and chocolate
pour in vodka
or beer
give him every kind of food he's ever wished for...

I just remembered about 2 years ago. My dad had already dipped pretty far into Alzheimer disease but he was feeding himself at the time.
While eating breakfast (which took him about and hour and a half) he also sometimes ate... candles... part of the cereal box, napkins, pencils...
he would see a chocolaty treat inside a plastic bag and try for ages to pass his hand through the side of the bag until finally he'd just pick up the whole thing and start to eat it... it's almost how Bubble is now.

Half of me thinks the end should come soon. It's not funny any longer... the plastic is no longer a bag full of cookies but a thin tube sticking out of his stomach into which I poor an awful smelling brown liquid... it slowly descends into his gut... it bubbles and churns... sometimes he coughs and out spews a bit of food (its gone the wrong way! up the esophagus and not down.
It simply is nothing like any kind of real life
and it might as well be death.

The entire day went by
and the only word he said throughout the day was
"Hey" for one quick moment when I was giving him meds... just hey...
eyes stare sometimes but mostly they are close...

what do we do?
whats the answer?
any ideas?

Day 60 Dad breathes

When Obama set out to change health care in this country
an uproar sprung up all across the land
people were angry
one of the biggest issues
they said
if healthcare is socialized we will lose the best doctors in the world
we have the best health care system in the world
we don't want to loose it

I left the hospital yesterday with my father
a list of medication and instructions in my hand
the nurse on duty gave them to me
with these instructions:

"follow the list"

Okay... I said, thinking myself fairly able... I asked a few questions
one of which was... "how do I feed him through the tube"
her answer: "Make sure he is at a 30 degree angle... open the nub... use this funnel... and empty one can into the tube 5 times a day. It works by gravity."
"Ok" I said.
and then they came to take my dad
and I had to leave.

I was also given a set of prescriptions by the doctor's "assistant" doctor.

I immediately went to the drug store to fill the prescriptions...

At home a visiting nurse came to help me out.
She looked at the instructions
"Do you have the insulin?" she said.

"Insulin?" I asked.

"Yes, it says here you have to administer insulin 4 times a day."

"No one told me" I blinked.

"No one taught you how to do it?!"

It turns out the insulin was in the prescriptions... but the insulin syringes were not.
In the prescription were another injection as well!
No one even mentioned this to me!
But
The prescription for the syringes (this medication has a different type of syringe) was not.
The "assistant" doctor "forgot" to write a prescription for the syringes... nervous giggle
On a friday afternoon
soon before
all drug store close
except the ones far away.
1 type of medicine for diabetes reaction

the other for possible blood clots

not at all serious of course
and if you believe that you are probably foreign and English is not your native tongue
or you have never watched a drama revolving around a hospital.
They are "QUITE" (Burian, H. 2010) serious. (actually to quote Honza Burian would also mean they weren't that serious THEY ARE SERIOUS)

We call the doctor
he says to me "Why you can't give this medication without any syringes!"
"okay" I say.
"And you must get training before you administer it!"
"Um. " I say... "I am not the medical professional here, doc. You are. So who was supposed to order the syringes? Who was supposed to train me?"
"Umblanjgdgs." He said. "my assistant."

yes... see. It is the best medical system in the world.

the calls the drug stores
we can't pick it up until the next day
day gets no medicine last night at all....

only food.
I think... i can do the food! Ive been trained!
and really it is quite easy.
remove the nub
pour in the can
flush with water
reinstall nub
done.

seconds later dad starts hacking
he cough and a big wad of whitish gray stuff emerges from his lips...
it is food!
The next day when the visiting nurse arrives she hears my story.
As I tell her her eyes get wider and wider

first of all... not a 30 degree angle
but a 90 degree angle

2ndly (in case you ever have to feed a loved one through a peg tube)
DO NOT FEED THE WHOLE CAN AT ONCE!
one can over the course of an HOUR

Dont you think these are important pieces of information to know BEFORE you return home with your sick father?!

The doctor actually called today to APOLOGIZE

Dad coughed all night because of it and the nurse suspected that he'd re-got pneumonia because of it.
She looked at me and said THIS IS NOT YOUR FAULT
but deep inside I felt like I was part of some plot to murder my father.
after some careful inspection
she thinks my dad is okay.
She gave me instructions on how to do things (I don't like it and didn't realize Id have to do these things as part of my job... I have to stick my father with a needle 10 times daily)

then
The nurse told me
you realize... you are near the end?


be careful what you wish for...

day 59

Dad must be moved every 2 and a half hours to avoid getting skin rashes, blisters and sores.
He is like a rag doll
no complaints
I push and pull him
no reaction

Mom and I sat in the room together for about a half hour
just starring at him

I think we miss the guy
who tried to kick us
and spit in our faces

funny how you can miss something like that.

I have 2 big assignments due on Monday again! I can't wrap my poor aching head around it all.
My ext class is going to be something easy

Bubble takes her medication... its cute. She fell asleep next to dad and she is still there. They are both sick... heehee

I took a bath again and finished a very poor fantasy novel to which I am now hooked and feel the need to read the next 7 books to find out what happens.
When do I have time to read a fantasy novel?
why right before my brain will explode and I need something to absorb the energy

I think mom is beginning to realize where my father really is.
I don't know how she is taking it...

48 years.... you are with someone almost every day for 48 years


and then he is nothing but his face
and even that only shadows him

day 58 pea brain

Dad is scheduled to return tomorrow
and
the tests returned and
No infections teem in his blood
and
his lung xray shows the pneumonia is gone


although this is good news
I worry
he is basically (health-wise) back to where he stood 5 weeks ago.

But he hasn't returned yet in other ways.

He has not spoken
he barely opens his eyes
he doesn't move his body much

remember when he first arrived
and I sat beside his bed
and for hours he spoke
and spoke
and spoke
and it was painful to hear him
call out for help
and ask to be dead...
I didn't think anything could be worse

now he says nothing
nothing is actually worse.

This is going way to fast for me...
the blog is supposed to document a decline
not a....
explosion toward death
that's how it feels
not steps
but LEAPS towards death... I am so conflicted about how I feel

I want him to SPEAK
I want...
him to die peacefully

I want him to LAUGH and SAY my NAME

I want him to close his eyes and sleep

I want him to enjoy EATING

I want him to have a stomach tube....

the only thing I am certain of is
I want this to END



Bubble has been diagnosed with lymes disease.
this is extremely painful to me
3 weeks ago I noticed a small red blotch on her stomach
for 2 days she was listless and slept a lot.
Then my dad went into the hospital
so I didn't get her to the vet until yesterday.
The blood test came back positive for Lyme's (a disease brought on by ticks very prevalent in NJ)

Luckily we caught it quite early.
The remedy is simple
3 weeks of antibiotics

it can reoccur later in her life
but the fact that we are treating it so soon
is a good indication
that it won't come back

I FEEL AWFUL
cause I brought her here... she's fine really
I mean, after those 2 days she's been her regular self

School is turning out to be.... BEYOND ME
listen to my current paper due on Monday:

The American Renaissance was intensely aware of the past. At the same time, it was intensely aware of the forces of change. It was a period of great industrialization that would end with the Civil War.

• Construct a strong, specific, and sufficiently narrow thesis analyzing how the tension between past, present, and future emerges in the writer’s work. You should support all claims with examples from the writer’s work. No sources beyond the textbook are required, but you may use such sources if you choose.

• Focus your analysis on any single topic that emerges in your analysis of your selected author. For example, you may write on any of the topics below. You may also select a focus of your own.


huh?

day 57 here we go again

This is a strange Blog
I am afraid it is not turning out to be quite what I had in mind.
I think because
even when life feels dull
and
like a cage
it unravels unpredictably
and turns and turns and turns

Dad did not return home today.
Last night he spiked a fever.
This morning they heard congestion in his lungs
They think he has obtained another infection
probably from the "pick" (the needle inserted into his vein)
And that he has re-developed pneumonia...


The doctor thinks now... that his alzheimer disease
and
his parkensons (they feel he has it beyond a doubt)

have progressed to a point
that they (the diseases) are actually interfering with dad's body's ability to heal itself.

apparently that is often how debilitating diseases of this kind work.

Not only are there outward signs of failure and change
but inward experiences as well.

I sat in the room next to my mother as we listened to a social worker talk about hospice and end of life issues...
I was quite surprised actually
wasn't completely ready for that

It isn't so bad... maybe
hospice can happen at home
and its not really end of life care all the time
especially in my father's case...

what the doctor and social worker were trying to tell us
is
that things like antibiotics... do not work so well for someone in my dad's condition.
and there has to come a point were you have to admit that things of this nature do not help him.
That's when hospice steps in.

Dad may (and probably will) improve

oh... I don't even think I know what i am talking about right now. I understood before... but in writing it it doesn't hold up.
We just have to decide whether we want to keep treating dad in the conventional way
(which leaves him lifeless, but alive... hooked up to an oxygen tank... while medication constantly drips into him... while in a hospital... while deteriorating)
or whether we want to bring him home (where we can still administer medication) and try to keep him more comfortable... but except that hospital care has no hope to improve him.)

maybe that's closer to what I am trying to say?

My mom started to cry.
of course
she said, "I need your father in so many ways."
She said, "We never talked about this. I want to know what he wants."

She feels so guilty.
so do I, by the way... but for different reasons.
I am happy he has the stomach peg because I feel guilty for possibly not recognizing the signs and helping him get pneumonia in the first place... every spoonful (as artistically enacted in my play) was painful for me... when he coughed I became so tense... and finally he ends up with pneumonia and I HELPED GIVE IT TO HIM
I know its irrational to guilt myself... but you can't talk about irrational and guilt to a once catholic
it doesn't help.

I feel, secretly... (and I guess I mean secretly from my mother) that we should stop giving him antibiotics... we should stop giving him oxygen... we should bring him home. Yet another reason to feel guilty.

If it is how I expect... and he himself has no real will to live... than at this point... maybe he shouldn't be alive.
And if I am wrong and he does will himself to live... we will probably see that here... recognize it... and do what we can to help him.