We Can Run but We Cannot Hide...

This morning I got my weekly report from the Hospice nurse, complete with gross photos of Dad's cancerous foot growth and his vitals from bed.  When the nurse asked Dad if he had any pain he told her his leg hurt.  She noted his foot with the cancerous football sized growth, was unwrapped and sitting upon a towel.  She got one of the nursing home nurses to give Dad a pain pill and to finish wrapping his foot.

The growth is growing and putting off an odor.  The doctor has prescribed some Bactroban antibiotic cream for it.

Both the hospice nurse and I have been attempting to reach Dad's physician, but he has not returned her calls or my emails.  This morning, I sent him another one.

Mom went to visit Dad this morning, arriving to find Dad still in bed.  Dad's caregiver for the day informed Mom Dad refused to get up for his morning shower and has been fighting everyone who attempts to help him brush his teeth...his teeth look terrible.

All Dad wanted to do was sleep.  Mom sat beside his bed talking and sharing family news.  Every ten to fifteen minutes, Dad would awake, open his one good eye and make a loud, GROWL and claw at his skin scratching.  Mom could see red marks, broken skin and scabs on Dad's arms and stomach.  She attempted to calm him and urge him not to scratch.  She asked if he was in pain...

Dad told her, "My skin hurts".

She went out to the nurses station and told them what Dad said and what he was doing.  The nurses told her they give him extra strength Tylenol three times a day for discomfort and Vicodin if it appears Dad is in pain.

The wound care nurse (or skin Angel as we refer to her) told Mom she could not treat Dad's skin until after his shower....hopefully they were able to get Dad up and in for his shower...

Mom got Dad to drink two glasses of water in between his dosing, growling and itching...

This morning the hospice nurse informed me Dad weighs 119.  It's up and down with Dad lately and we all feel he is on his last stages of his Alzheimer's....sleeping a lot is one of the definite signs.  We would all rather him sleep than be awake and be miserable.

Mom emailed all of us and asked for our prayers for Dad.  She also hoped we would all learn a lesson from Dad's procrastination.  All of his skin cancer problems and dental work could have been resolved if he would have not procrastinated and taken action in the beginning when it would have been simple to treat. 

Unfortunately for Dad, when it happened, he was still at home, but was very paranoid and suspicious.  I used to work as a medical assistant and told Dad his wounds looked like skin cancer and urged him to go get it seen by a specialist....but he would not hear it.  He would not allow me to even say the words dementia or Alzheimer's.

He would take himself on and off his medications.  He had leg ulcers, rapid/irregular heart beat and prostate problems.. We all tried to get him to go to the doctor but he knew better.  No one could make him do anything until it all caught up with him...it always does....we can run, but we cannot hide.

We all feel it.  Visiting Dad alone is the worst.  I feel for Mom taking on the burden of regular visits each week.  When we talk, we all confess to being emotionally drained and mentally exhausted.  Thank God we have one another to lean on....some days it feels almost unbearable.

Our Song....

I called to talk to my Dad today.  His male caregiver told me Dad had eaten 70-80% of his lunch and his weight has been staying between 120 and 121.  He told me he had not seen Dad's doctor...but that Dad seemed to be doing OK.  I asked if I could speak with my Dad...

I greeted Dad with my usual, "Hi Papa-Doots"....

Thankfully, Dad responded by greeting me by name, "Hi Donna...I was just sitting here with a pretty young lady who reminds me of you..."

"Aaaahhhh, you are always surrounded by the pretty ladies..."

"Yes, I like pretty girls..."

"I love you Dad."

"I love you too..."

His voice was tired and weak.  His words were slurred and mumbled...but I could understand him...

I had heard the song Bye, Bye, Blackbird on the radio the other day and thought of him... Bye, Bye, Blackbird is the song my Dad used to sing to me when I was a baby with colic or to settle me down to go to sleep.  It has always been our song.  We danced to it at my wedding with my second husband. ( I eloped with my first...)

" Dad, you know what I heard on the radio the other day?  Bye, Bye, Blackbird..."

Dad broke into song singing a few bars..."Bye, Bye, Blackbird..."

I continued with, ..."Pack up all your cares and woe, here we go, singing low, bye, bye, blackbird...where somebody waits for me, sugars sweet, so is he, bye, bye, blackbird....no one here can love or understand me, oh, what hard luck stories they all hand me, make my bed and light the light, I'll be home late tonight, bye, bye, blackbird..."

"Oh it is so good you remember that!"

"It's our song, I'll always remember it...we danced to it at my wedding...remember?"

"No, I don't remember, but that's nice..."

I told him my daughter Jodee got married this past weekend and they sent their love to him...

"Oh, I'm happy for her..."

"Jerry (my husband) sends his love to you too..."

"Good..."

"Did you have a nice lunch?"

"I did not eat yet..."

"Oh, I just talked to H____ (his male caregiver) and he said you just had lunch."

"I did?  I guess I did...I don't remember."


"I love you Dad..."

"I love you too dear... I'll see you at the party..."  (I have no idea what party he is referring to...most likely because we were talking about the wedding...)


"Are you going to take a little nap?"

"I'm going to try..."

"OK, sweet dreams...have some nice adventures...."

"YEAH!"

"You can ride some horses, go sailing or take a nice swim in the cool water...."

"That sounds good."

"I love you Dad...God Bless you."

"I love you too and may God Bless you too..."

A Real Train Wreck of a Visit....

Mom would have rather mopped the floors then go see Dad...but she went to visit him anyway.  It is very difficult for any of us to go visit with him alone.  Emotionally, it is always draining....we need one another to hold one another up emotionally...

Mom arrived and the male Hospice CNA was just finishing up giving Dad a shower and had put one coat of lotion all over Dad.  Dad sat with his grimace face, clawing at his neck and upper neck, scratching...scratching..."I got mice climbing up and down my arms...they keep the hair down but I don't like....."

The male CNA told Dad he would put more lotion on him....

Mom greeted Dad and asked how he felt today....

"GRRRRRRRRREAT!"

"Oh, just like Tony the Tiger", Mom quipped...."What did you have for breakfast Don?"

"Shirts..."

"Shirts? WHAT DID YOU HAVE FOR BREAKFAST?"

"I don't remember..." closing his eyes and smiling as the male CNA rubbed lotion into his alligator skin.  The male CNA told Mom what a pleasure it is to care for Dad...he told Mom Dad is such a nice, kind gentleman.  Some times Dad gets angry, but very rarely.  The CNA said he saves Dad for the weekends after a long hard week because Dad is such a joy to be around...

"Thank you, we really appreciate all you do.  Thank you for remembering to put the lotion on him." Mom smiled back at the CNA with gratitude... Then Dad started talking...

"I took a sheet metal train into the City....I'm number one on that train...first in line; that's why they play the music for me..." (someone was whistling in the hallway...)

"I follow the middle because I get more recognition that way....It's really great...metal trains...when you come out, the trainman comes out with you and then everyone follows you.  The people walk very fast because they want to keep up with you.  Makes a big difference in your occupation.  They come by every five minutes."

Mom had taken pen and paper from her purse, head down, looking up every now and then to make eye contact with Dad and smile with approval as she wrote as fast as she could to get everything he said down...

"They come out of the trailer cars because they don't want to fall.  Walking is VERY dangerous.  The train goes miles all the way into the City depending on the person.  This morning I flew down to the City...."  Looking at Mom, "You saw John (?) clear down on the railroad...He must be a big shot because they won't do anything until they get to the end of the line...He is very special."

Barely taking a breath, Dad continued his rambling...."The girls are really something here, and on the metal train....First, they bring lunch into the toilet.  Little man doesn't want to fall.  I have clean hands and fingernails so I can scratch. I am able to form a filament - much smaller than the fat legs I used to have.  More normal  now and that makes me happy. (Dad still has the huge growth on his foot, but as long as it is wrapped, he is not aware of it.)  Now I get the regular legs and they make a big difference."

"I always have my eyes open to watch the girls - they are very pretty.  I feel so happy when I see the train was actually metal.  The girls will love it better too and they do."

"The guy goes around with a belt around his chest.  He is a Q boy...he makes up the beds.  You can sleep on both ends.  Doctor-Doctor checks to make sure.  She is always very clean and careful...you can see she is A-1.  She goes in other rooms to make sure - always in a rhythm, very hygienic and personal.  She watches very carefully.  You can tell because she is so fast and clean.  I love to see her work very hygienic.   I rest so I am ready for quick work...they walk so fast.  When I clip my nails I clip them so fast and they want me to know that..."

Head down, Mom is wishing she remembered her steno.... When Dad goes off the rail like this, we try to write it down and make sense of it..but it seems lately, there is no making sense of what he says.  It fries our brain to listen to him talk like this, and writing it down almost makes us feel like we are one caboose short....

"IT'S WONDERFUL, I chew both umbrellas!  I wait 'til the first one is out, then I know I am first.  I want to make sure I don't run into someone with my pee-pee out..."

Mom's head bobbed up, looking at Dad like he had four heads...but knows what a wild imagination he has...

At that moment, Dad's lunch arrived, making Mom heave a sigh of relief.  She was never so thankful to see his lunch arrive.  It looked and smelled delicious.  Meat loaf with gravy, mashed potatoes, Dad's favorite cubed beets, pudding, ice cream, milk, bread and butter.

Dad was still mumbling...sometimes very softly then louder as if someone turned up his volume....Mom could not keep up with anymore of his bizarre conversation, so after Dad polished off his lunch, Mom kissed him and let the CNA take him to his room for  a nap.

She figured Dad had to be tired, she knew she was exhausted.  She called me when she got home to make sure her report of their visit made it to my inbox.  She was so tired she was not certain if she even sent it and she knew she could not write it down again!

I reassured her I had TWO copies of her email in my inbox and I would post it to my blog.  Sweet dreams Mama....I think she will sleep through the night after this train wreck of a visit....

Hot Dogs and Racing for Dad....

Mom didn't visit Dad last week because she had been under the weather with a cold.  July 3rd,  she felt well enough to visit Dad at the nursing home...

The nursing home was celebrating the 4th of July and as promised, they barbecued hot dogs.  Mom took Dad out on the patio and asked for his lunch to be brought out on a tray.  Dad loves to sit with the warm sun on his back (even if it was a bit over cast).  Mom went to get his sunglasses but could not find them.  Mom told Dad she could not find his sunglasses....

"I know where they are..." (Probably gave them away again...)

Mom asked where they are, but Dad was too focused on his lunch which had arrived when she was searching for the sunglasses...

Dad ate his lunch of Lasagna, salad, Mexican corn, ice cream, beans, pudding and ice cream; then asked Mom to make him a hot dog with extra mustard, onions, relish, & ketchup... (Mom noticed Dad guzzled a Sprite and a full glass of milk and didn't cough as he has been doing...)

" I feel GRRREAT! (Dad announced suddenly)  "I'm running and racing again.  I bet everyone!"

Mom nodded and secretly hoped he was not attempting to stand on his foot with the growth....

Doctor-Doctor stopped by to give Mom a hug and flirt with Dad...

Looking up at Doctor-Doctor from his wheel chair, "Wanna' race?"

Mom asked Dad if he enjoyed having their oldest son visit from Ohio two weeks ago; he had to return to go back to work...

"Yes, it's great, we going to run a race together later..."

Mom reminded him B_____ had returned to Ohio to work...

"I know, I know...but the race is still on."

When Dad slowed down in feeding himself, he began to glare at her.... "Aren't you going to give me my ice cream?"

So Mom picked up his ice cream and began feeding Dad...

Anticipating Dad would be ready for a nap, she leaned in to kiss him good bye and asked if he was ready for his nap...

"No, I would like another hot dog with extra mustard..."

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Have a great weekend everyone...

(((((hugs))))))

Father's Day, 2013

The plan was for all six siblings to come together with Mom and go rally around Dad for Father's Day. We all were to meet in front of the nursing home at 11am.  We all arrived except for the second to the youngest brother, S_____ who woke with either "pink eye" or "conjunctivitis".  He did not want to take the chance of infecting Dad or any of us...

Two of the brothers went to Dad's room to bring him out front so we could surprise Dad.  The brothers returned announcing Dad was getting his shower.  We all sat and chatted, catching up and celebrating having our brother B____ from Ohio here with us.  I think it has been about 9 years since his last visit.

Before too long, the brothers returned for Dad and wheeled him out onto the nursing home's front, shaded patio.  Dad was very happy to see all of us, knowing we were family, but not calling us by name.  He would say "my son".....to the brothers, or "this is a very important person to me"...

Dad, Father's Day, 2013

Dad called me "Holl Doll", despite me correcting him and telling him I was "Donna"....Dad told me, "I know, that's what I said, Holl Doll"....  My sister comforted me telling me Dad usually calls her "Donna".

We posed for various pictures with Dad...

 youngest brother E___, Mom and Dad

Mom, Dad and brother B___ from Ohio 

brother K___, Donna (me), sister Holly (Holl Doll)

and Dad in front 

Brother K____'s wife T____ and brother K_____

Five out of the six kids, Mom and Dad

After photo taking, we each took turns reading Dad our cards to him.  Dad struggles reading, especially with his one eye closed with cancer, and not wearing his glasses.... Light makes his eyes even more sensitive.  One of the brothers returned to Dad's room to get his sunglasses.

The youngest brother E____ had been inspired to read a poem he wrote to Dad.  It was very moving and made several of us cry.  He also blew up a picture of his three white Havanese dogs, with a bubble above each dog's head with the message, "Happy Father's Day"....  Dad held the photocopy up close and kissed each one of the dogs.  So sweet.

Dad's Hospice CNA came out and stopped to tell us he was so concerned with how Dad had been most of the week...and so surprised to see how Dad perked up when we came to visit with my daughter Jodee on Friday.  Dad's appetite jumped from 60% to 100%.  I had not met the Hospice CNA so I hugged him, thanked him and told him he was an extension of our family.  Others in the family who had not met him, introduced themselves.  The CNA put his arms around Dad and wished him a very happy Father's Day and waved goodbye to all of us.

One of the nurses came out front and invited us all to come in the back courtyard as they were having a BBQ.  We all gathered behind my brother B_____ as he wheeled Dad through the nursing home and into the back courtyard.

Dad wanted a big hot dog with mustard....so I went to the Activities' Director, who was doing the cooking, and asked for a hot dog.  "Sorry, we are just doing burgers, chips, sodas and baked beans...we'll have hot dogs on the 4th of July."

I took a hamburger with lots of mustard, some relish and a little ketchup back to Dad, along with some baked beans and chips.  Dad was already sucking on a soda with a straw.....which he had drained!  My younger brother had given Dad a Coke.  I figured we should steer Dad away from the caffeine so the next soda I gave him was a Sprite.

Dad was anxious to eat his "hot dog" and I was attempting to wait for my brother to bring me a knife to cut it in half and Dad would not wait....he began grabbing at it...so I had no recourse but to hold it up for him to eat.  Dad almost bit my fingers as he growled and took a huge bite.  I cautioned Dad not to take such big bites, but he totally ignored me.  I was doing good if I could get him to finish chewing before he growled and took another enormous bite!

Dad in foreground, wearing black fedora hat, scarfing potato chips....

Dad polished it off along with another soda and asked for another....so while I went to get Dad another hamburger, my brother B_____ fed Dad some baked beans.  I think Dad ate two bag of chips and three sodas in addition to the two hamburgers....and still wanted a BIG HOT DOG WITH MUSTARD!

Ever humorous, brother E____ quipped, " Dad, you're gonna' have to wait until the 4th of July for the big dogs with mustard...just a couple more weeks."

I noticed Dad slowed down on his last few bites of hamburger...  He also started to droop in his wheel chair...a definite sign he was full and ready for a nap.  Dad confirmed he was ready for bed when I asked....

While my brothers, Mom and sister were saying their good byes, I slipped away, back to Dad's room and hung his cards on his "wall of love" (where we hang all our cards, photos, notes, letters, etc on the walls around his bed.)

My brother B_____ , Mom and I wheeled Dad to his room....B____ wanted some alone time with Dad to say his good byes as he fly home last Monday morning back to Ohio.  Mom and I visited with the nurses until B_____ came out of Dad's room.  I went back in to give Dad one more kiss....and Dad asked me as I leaned down to kiss him, "Where is my hot dog with mustard?"

"You'll have it for dinner Dad....in the mean time, get some sleep and dream of it...."

"OK...that sounds good to me..."

"I love you Papa-Doots..."

My sister and her husband invited everyone over to their house in Claremont for a Father's Day BBQ at 2pm....so the party moved to their house...eating...laughter....conversations....great food and merriment continued...

Back row: Four brothers E_____, S______, K_____ and B______
Front row: Donna (me),  Mom and my sister Holly (Holl Doll)

part of our huge family who were able to attend the BBQ

 Four generations:

my nephew (Holly's son) and his 3 month old son, his grand father and father

 Brother S____ and one of his two sons

(sister's pool in the background in the re-surfacing process)

 Mom and nephew's wife posing with stick on mustaches

Cousins... S_______ & S_________

(Brother K's daughter and Holly's daughter)

Yesterday, my sister sent me all her photos and discovered one of them made us all comment and laugh...  Dad has always had very dry skin and scratches himself constantly.  The wound care nurse at the nursing home does an excellent job of caring for Dad's skin and keeping it greased up with Aveeno, Aquaphor, and Vasoline....

The Hospice Nurse obviously was rushing to get Dad dressed so he could join us on the patio and did not put lotion on Dad....We all stop Dad from scratching his skin (which is so thin and bleeds) so the picture below is Dad taking advantage of itching himself...when everyone was distracted taking the picture... Classic!

Dad taking the opportunity for a forbidden scratch....you just gotta' love him!