Well, way too long again.
I wanted to post immediately
after the Alzheimer's walk.
I think it is a good thing I didn't.
I was so upset and angry about
so many aspects of what went on
that day that I decided against
venting. The good from that day:
We all went over to Pop's place
and had a pizza party....
just like last year.
It was a bit different this year
as he is in a wheelchair now,
full-time.
Pretty sure most of the family
had no idea about this.
He also doesn't speak now.
Pretty sure most of the family
had no idea about this either.
He did however speak some very
strong words that Saturday afternoon.
He opened his mouth, pointed and said,
"The sons are here, the sons are here"
AMAZING!!!!!
He hasn't spoken in a month at least...
He opens his mouth when the whole family
is there and this is what comes out??
I couldn't believe it.
Another sign that our father is in there.
Despite what anyone thinks....
He's in there........
You would think that these words
would have made some of the "sons"
want to come and visit him more..
The fact that he recognizes them...
Ah, no.
None have been back......
Well, except for Thomas..
He is good for a visit once a month
or so...
better than the rest....
I try to let the anger go.
It hurts me too bad.
I just love my dad so much and
wish that the others would step up.
It wears on me...no one seems to see that.
The all just think of themselves and
how this disease affects them....
What about Pop's??? I wonder if anyone
thinks about how he feels...
I see it often...It's reassuring
and heartbreaking all at the same time.

i miss my daddy

A big weekend!

This weekend is the big
Walk to end Alzheimer's.
We should have about 20
people walking with us and
we have raised just under
$4,000!!
We are very excited about this.
When you have a family member
that has Alzheimer's, you mostly
feel useless and helpless.
By doing this walk and earning
money, it is a way to do good and
to give something back.
I have utilized the services of
the Alzheimer's Association
several times and it is truly
a great organization that helps
people/caregivers in their time of need.
I still feel bad about most of my
family members and their lack
of interest in helping us.
But I am learning to let go of 
all of the anger that has built up.
Which is huge!
I'm realizing there is nothing to
be angry about.
This is on their shoulders, not mine.
I do all I can do.
I also come to realize that I don't
think it's that they don't "want"
to help.  It's more that they
don't know "how" to help.  
And also that they are scared.
They hate the thought of Pops
with this disease and they just
don't know how to deal.
Someone once said to me, 
"Katie, you are the chosen one"
I've had to think about this alot
but I think I get it now.
I'm the one chosen to be able
to deal with it.
I'm the one chosen to able 
to handle it.
I'm the one chosen to stay
close to my dad.
I'm the one chosen to be able
to make decisons regarding
his cares and his life.
I'm glad I'm the chosen one.
I can't imagine having it any
other way.

i miss my daddy

Two months???

It's been two months since
I posted???
What the heck.
Time sure does fly.
The summer absolutly flew
by.  Just in the blink of an eye.
Things are very stable with Pops.
Last night was a wonderful
visit for Leah and I.
I was so happy to see Pops
smile and enjoy himself.
I know he's in there and I
know he knows who we are.
I don't care what anyone else
says about it.  I don't think anyone
else spends enough time with him
to witness it, but when you are there
for hours like us, you will see it.
It's in his eyes.  He stares at us.
Deep stares, deep into our souls.
Sometimes eery.  Mostly happy though.
He reaches for my hand and wants to hold it.
He watches my every move and keeps his eye on me.
When i sing to him he laughs!
He brings me so much joy.  I mean don't get
me wrong, I want my dad back bad.
But ya know, I will take what we got last
night and love it.  Considering this disease
and what it does to people.........
I'll take it :)

i miss my daddy

Sometimes I just don't feel like
writing about this situation.
It has been a month since I've
written.  I want to remember some things
but I want to forget most.
I guess that is why it is so sporatic.
Things continue to move along....
slowly
no realy progress either way,
good or bad..
just maintaining.

Last night we visited later in the evening.
Pops was in a really good mood.  Overjoyed
to see us.  Makes me feel really bad that
the summers are just so busy and I just
can't get there as often as I would like to.
But what can you do....only so much.
When I was getting ready to leave,
I bent over and kissed his head like I always
do.  His eyes got huge and he reached for
my hand.  He brought it to his lips and kissed
my hand and just looked at me.  It was so
precious and sad at the same time.
Leah and Tyler were both there to witness it
which made me happy.  They need to see these
moments of lucidity. 

On another note, I have a friend going through
issues with her dad.  She said to me, 'i want to
go out of town this weekend but i don't want to
leave everything on my sister'  WOW  what a
concept.  I wish someone would consider that
for me.  ha.  That will never happen. 

i miss my daddy

I think I am trying hard to not be angry
at certain family members.
But am I ?
I guess I am not sure..
Why do I feel so much anger and
resentment if I'm trying hard not to
feel it?
It is a very weird thing.
I cannot quite explain it.
Maybe it is that I WANT to try hard.
I get so angry over things I hear.
Like this----
Brother speaking to my mother:
Brother: "Who is going to the cabin this weekend?"
Mother: "Nobody"
Brother: "OH, GREAT, we will go up there then, man is (wife)
going to love this!!!"
ME:  REALLY YOU A-HOLE?? Are you Fing kidding me??????
This particual brother has not done SHIT for
this family during our time of crisis. 
I am so sick of people coming around for fun and games
and then disappearing during important times of need.
It's not fair and it is rude and selfish and totally
and completly uncalled for.
I wish my mom would let him/them have it but
I guess I can't blame her. She is 79 years old
and has always been a peace maker.
OH and then the brother has the nerve to
say that he will stop by to see Pops on Sunday since
it's Father's Day.
You know what, GO AWAY.
STFU you big jerk

LOL
I don't think my anger has subsided at all!!!
I remind myself,
I'm only responsible for my own actions.
I have no control over other people and their actions.
My dad would be appalled at their behavior.

i miss my daddy

Tyler in charge!

Me, Leah, Annie and Donna all
left town last weekend to go and meet
the newest member of our family,
Miss Addison Grace. 
Upon planning this trip I was really
worried about who would be there for
Pops.
When I realized that Tyler would be
home from college when we left
I felt a sigh of relief.
I knew that he would be the one that
would be in charge while we were gone.
Sad but true that a 19 year old barely adult
is the one that I would put in charge of my 80
year old ailing father.
With 5 other siblings to choose from wouldn't
you think......
NOPE!
I pick Tyler.
He has always loved his Papa so much and they
were always the best of buddies.  Memories
of early morning walks and trips to the Aitkin
bakery are I'm sure vivid in Tyler's mind.
He spent quite a bit of one on one time with
Papa and the love and respect he has for him
shows.
I'm so proud of Tyler and the awesome young
man he has become.
I know that both my kids would not have
things any other way when it comes to caring
for their Papa. 
Their only wish would be to rid him of this terrible
disease.

i miss my daddy

Well, it is funny how things can
change in such a short time.
my last post stated that things
seemed to have stabilized and
that the meds seemed ok.
Well that has changed drastically.
We have several days of complete
un-responsivness..
Head down, mouth hanging open,
drool coming out, unable to walk...
So the Dr. decided last weekend to cut
the Seroquel out and see what happens.\
He came back to life!
On Sunday he was walking around like crazy.
ALong with this good of course must
come some bad.
The aggesive behavior and the
combativeness seems to have also
come back to life.  I feel horrible
about this.  It just seems that you
can't have one without the other.
It is so stressful and sad.
We will continue to work to find
a happy medium. 
We have increased his Depakote for now.
The Dr. agrees that Seroquel is not he right
medication for Pops.  We will try other options.
Also, he fell yesterday and has a large bruise
on his back and also a very bruised toe. 
Poor guy....

i miss my daddy

things are pretty OK lately.
certainly not wonderful but
pretty darn OK.
I'll take it :)
the meds have seemed to
stabilize which is huge.
met w/the Dr. and he was
super nice and informative.
had a couple of really nice
 days with speaking and
smiles....
what more could one want
when dealing with this disease?
yesterday I said, "Hey Pops, do
you know my name today?"
He looked right at me and said,
"Today"!!!!!!
Must keep the humor!

i took these 2 pics when pops was off all mood altering

drugs and was the best we'd seen him in a very long time.

i'm glad i took these and i'm glad he was so happy on this day.

now they have put him back on a very low dose of meds but it

sure does make a difference.  i haven't seen him this happy ever

since.  not alot we can do about it.  they need to be able to handle

him.  this is what they feel they need to do.  so be it.  i hope to be

able to make a dr. appt. next week.  we will see.  he isn't too bad

but he sure is not as happy as he was in these pictures.

i have a busy weekend aheard and am feeling horrible about my

lack of time to be able to go visit.  i usually go tues, fri and once

on the weekend.  but this weekend is pretty booked.  i think leah

will be able to go which will help.  she is a very good visitor and

he LOVES her the best!

i miss my daddy

Random thoughts for a Friday

• My anger management is improving!
• They put Pops back on 2 doses of Seroquel. I'm trying to wait it out and see how it goes without being overly upset about it.
• Spring brings with it fresh outlooks on life.
• I can't wait to bring Pops outside when we visit this spring and summer.
• Leah and I want to take him to the DQ! We can walk there but would probably need to borrow a wheelchair for him because it's a little far!
• My children continue to amaze me each and everyday.
• Random people/strangers amaze me when they are genuinely interested in my life caring for someone with AD.
• I love it when people ask me how my dad is doing, even though it doesn't happen very often.
• I continue to be amazed by the kindness and love of strangers and the lack of it from my family........

i miss my daddy

Anger, what else!

"For every minute you are angry,
you lose sixty seconds of happiness"--Ralph Waldo Emerson


This quote hit me this morning.  I need to get over my
anger and start focusing on being happy.
I need to look for reasons to be happy.
I know that I can find them if I look.
There are many blessings around me and
around my dad and even around this horrible situation.
If I can allow myself to let go of the anger perhaps they will
become more vibrant in my daily life.
I have definitely been better lately. 
Not because things have changed,
because they really haven't..
But I think because I am letting go...
Letting go of the anger that has
been controlling me for a very long time....
It is important to be able to realize that
you have anger and it is even more
important to let it go.
I am working hard at it.
I am trying to follow my own words:
"I am only responsible for my own actions and not those of anyone else"
So much easier said than done.


i miss my daddy

Whenever i think how bad things
are and how bad i have it with my
dad, something happens to bring me
back to the reality that it can always be
worse.
I found out last night that Jim died.
I blogged eariler about his wife Colleen
and a conversation we had a few months ago.
Jim had Frontaltemporal Dementia and was
FIFTY-SEVEN.
Unbelievable.
THIS is one sad disease.
It strips you of all that you are...I believe
he started with symptoms before turning
fifty.  Probably one of the saddest stories
I have heard about in a very long time.
My heart goes out to Colleen today and her
family.  And as sad as it is that Jim is gone,
he is in a much better place and it is probably
such a weight lifted off of that families shoulders.
Colleen is probably one of the strongest
women I have ever met in my journey with
mental health issues.
My God bless her and let their family find
peace.

i miss my daddy

Jipped

i just haven't felt like writing about
ad
lately....
i'm tired of it.
tired of dealing with it.
tired of talking about it.
tired of being robbed by it.
tired of reading about it.
tired of studying up on it.
tired of how it affects me.
tired of how it affects my family.
super tired of how it does NOT affect my family.
JUST PLAIN TIRED.......
Leah said to me last week,
"Do you ever feel jipped?"
YES
every single day.
it sucks. 
robbed of your father.
robbed of your grand-father.
robbed of your great-grandfather.
Jipped
is a good word for it.
I feel terribly sad and extremely mad.
I will try hard to express my feelings
more on this blog to make myself feel better.
That is why I started this, to vent....
to no one in particular...just to vent.
I hate this disease. 

I miss my daddy

The big EIGHT-O!

 Me, Pops and Leah on his 80th Birthday.

Pop's 80th birthday was on February 8th.  It was a bittersweet day just as most days are.

We did not make any real plans.  My mom and sister were with him during the day.  Leah

and I decided to pick up pizza and cupcakes and go up for dinner.  He was in an outstanding mood.

It was really nice to see this because he had been sick.  Donna mentioned that Ryan, Bethany and Olivia

may be coming by to give Pops a Birthday greeting.  I never heard from anyone else.  So Leah and I got there and set up our table and helped Pops with his dinner.  Then Ryan texted and said they were on

their way.  We waited for them to sing and do the cupcakes because we thought Olivia may enjoy this.

When Olivia walked in she marched right up to Pops, pointed her finger and then started waving saying, "PAPA, PAPA, PAPA, PAPA".  It was the sweetest cutest thing ever!  He loved her and she loved him right back which was so refreshing and nice to see.  She was not scared of him in the least. 

They were absolutely precious together and it brought a tear to my eye.  My dad has always LOVED children.  He really loved his grandchildren so much.  He also was very proud of them all.  So to be able to see my dad with his great-grandaughter, interacting and enjoying her company was HUGE.  We were the only ones in the family to show up that night........But little Olivia and her sweet face made it all ok.  I sure hope that they will bring her up there again.  It may not go as well as it did that night but it is really good for Papa and also for her. 

Pops can't walk unassisted anymore so Ryan and I were helping him to his room at the end of the night.  Oliva came running up and holding out here hand.  We figured out that SHE wanted to help Papa walk to his room too!!!  Here is a picture of that!

i miss my daddy

The guilt of being away

i wish i didn't feel the guilt
that i do...
whether it is just being away
from my dad for a few days or
taking a full week break.
i'm leaving in 2 days for Mexico
for 1 week...
I feel horrible about leaving
for so long but also need the break.
then the guilt sets in regarding
my mother too...
ugh.. guilt is a bad feeling.
i wonder why i have it...
i always here the phrase,
"catholic guilt"..
i don't know what that means
exactly but i wonder if i have it!
i am not a practicing catholic,
but i was raised catholic.
i will try to rid myself of the guilt
and have a good time..
i am worth it and i deserve it...

i miss my daddy

A conversation like no other....

Last evening I had the pleasure of  speaking
with a very strong and couragous woman.
Her name is Colleen and she is a wife whose
husband is in the same unit as my dad.
Her husband is young...not yet 60 I believe.
He has a cognitive impairment known as
frontal lobe dementia.  What a story she has.
Just when you think you've heard it all or
just when you think YOU'VE got it so bad....
someone comes along with a story that makes
you think... a story that makes you take a step
back and look at your life and your situation.
We are to be grateful that we had our Pops as
long as we did. 
We are to be grateful that we were able to find
this home for him and that is so wonderful.
We are to be grateful that Pops was able to
know and love his grandchildren.
We have much to be grateful for.
Sometimes it just takes someone elses story
to make us remember.
I feel honored to have been able to speak with
her and to share a part of my story with her.
A very smart, strong and corageous woman.
Wow....I was very impressed by her.


i miss my daddy

I have a feeling that the physical aspect of
my dad is dwindling away.
On Saturday when we got there for supper,
he was walking out of his room, escorted by
2 staff.  He could hardly stand up, much less walk.
It was so terribly sad to see.
It's like you know that this is coming,
but to see it is heart wrenching.
He was doing the "old man shuffle"
His head was down, his back slummped
over and his feet shuffling.  I felt as though
they were pulling him along and perhaps he
didn't know to move his feet.  Hard to say.
Once seated, he did eat really well and even
smiled at us and seemed alert and happy.
I am sure that a wheelchair is in our future.
Funny how I am much better at rolling with
things now.  Before this would've devastated
me.  But now I am feeling that  this is just
the progression that will happen.  There is
nothing I can do about it and it is out of my
control. 

i miss my daddy

Kisses!!!

What a fun visit we had on NYE!
Leah, Tyler, Kelsey & I went to
hang out with Pops just after lunch.
He was in a pretty good mood.
We got him some puppy chow and
placed him in his chair.  He
looked at each one of us intently.
He "worked the room" with his eyes.
Sometimes giving us an eerie stare.
It never bothers me.  Sometimes I
feel like it pierces right through
me, but it doesn't bother me!
Leah was standing next to him and
he took her hand.  He "shook" her hand
for what seemed like forever.  His
"shaking" of hands is really a nice
gesture that I think means, "THANK YOU".
It feels strongly of love to me. I believe
this is a way to show expression.  Since
he cannot express verbally.
He then pulled her hand up to his face
and at first I was afraid he would bite her.
But he started kissing her hand!! Like
crazy! Kiss, kiss, kiss!!! It was adorable.
SO loving and again, an expression
of gratitude and love and kindness.
I know he knows that it is US and I know
he knows that we come to see him.
When we were getting ready to leave I
walked up to him and held out my hand.
He held up his finger as if to motion,
"come here". I leaned down hoping he wasn't
angry.  He pulled me in and kissed my cheek!!
I love my dad so much.  And I miss him
more than I can ever express. This disease
sucks.  I hate it. It also is tearing
apart our family, one member at a time.

i miss my daddy