This blog was formerly dedicated in 2009 to my Dad who died of Alzheimer's in 2013. It's been three years now...and I find myself missing blogging...so I am re-inventing my blog... because, after all, life is about moving through, and going forward...

Saturday, June 22, 2013

An Opportunity to Help and Earn Some Extra Money for Alzheimer's...

Check this out...you can help Alzheimer's research with your own personal Caregiving experience and earn up to $250 ($125 each respondent) for 90 minutes over a two day period June 24 and 25, 2013.

Paid research by blogforalzheimers.com

Have a great weekend everyone...

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

Thursday, June 20, 2013

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!

Saturday, June 15, 2013

Today Was Definitely a Good Day...

This has been a rough week of visits with Dad... I arrived this past Thursday; my brother arrived last Monday and has been visiting every day.  The last two days we found Dad in bed sleeping.  He was so sleepy yesterday we could not even wake him up except for a sip of water...

The day before he was cold and afraid.  I got him an extra blanket and rubbed his back while my brother read him the Bible and rubbed Dad's head.

My daughter Jodee wanted to visit with us today and drove up from Riverside county.  Mom, my brother, Jodee and I went to visit Dad, prepared for the worst.  When we arrived, we found Dad sitting in his wheel chair in the lunch room waiting for lunch.

Dad is so pale, gaunt and weak, but he perked up when he saw us.  He was thrilled to see Jodee, his grand daughter.  We took Dad out on the patio and parked him at an umbrella table with his back a wee bit in the sun.

He was happy to see us and chatted in a weak voice, but with more volume than we have heard most of the week.  He was flirty and feisty.  He asked if we had ever gone with him up the elevator to the top floor of the nursing home (it is only one story) but in Dad's mind, it is a skyscraper and went on and on about the view and his office up there.

His caretaker brought his lunch outside.  It looked and smelled devine!  Meatloaf with gravy, mashed potatoes with gravy, diced beets, strawberry ice cream, pudding, bread and butter, milk, grapejuice and coffee.   My brother fed Dad dessert first from one side of Dad and I fed him his lunch from the other side of Dad.

He told us his ear hurt.  He said it was "pounding" but then told us when he goes to the beach it is always so loud...so to be safe, I told the nurse of Dad's complaints.  I also noted his appeared to have a swollen spot on the upper right side of his nose.  Dad also complained of me hurting his nose when I wiped it for him.  He told me I hurt him...

I apologized and told him I was sorry and he told me, "Well, then DON'T DO IT AGAIN!"  Feisty!

He was very taken with my daughter Jodee...(because he is such a shameless flirt) he told her how much he loves pretty girls and wants to kiss them...but he wants to kiss them a hundred times!  We all roared with laughter.

When it came to drink, Dad usually coughs because he is either having difficulty swallowing and/or he coughs and chokes.  When he was drinking his coffee, I kept warning him to sip and not guzzle.... He tried to guzzle and started to cough, so to hide the fact he was coughing, he coughed, then went..."HAHA..HOHOHO...HEEHEEHEE"....we all laughed again.

My daughter took pictures and promised to send us copies, so I will post them when she has time to send them to me.

The Social Worker came out on the patio as we were finishing up the pictures and asked if we needed any services for Dad.  I told her Dad needed a hair cut, his eye brows trimmed as well as his ears, nostrils and mustache.  I mentioned Dad's complaint of the pounding in his ears, the sore nose and the little swelling on his upper lip.

She asked if he needed to see the Dentist and we told her NO.  I also told her he needed his nails trimmed on his fingers and toes.

Dad has not been eating well all week, but today, he ate 100% at breakfast and 100% at lunch!  Very happy for all of us to see Dad so animated and wanting to eat.

After finishing lunch, Dad thought it would be good to go back inside....so we wheeled him back inside and toward his room.  While walking down the isle, we greeted several of the staff members and gave them hugs.  His male caregiver for the day wanted to look at Dad's upper lip and told us Dad used to have a scrab on his upper lip and he kept picking it...he felt it was OK. 

Two young nurses and Doctor-Doctor came up to Dad and began talking with Dad.  We all said our good byes, but Dad was totally focused on the young woman and treated us like "chopped liver".  We told him we would all see him tomorrow and he told us he would look forward to it.

Tomorrow all six of Dad's children will be there in addition to some spouses, and grand kids, for Father's Day.  We'll have to take up a couple of tables...we'll have so many family members...it should be a good day for Dad.

What a relief to see him more alert and social.  My daughter was thrilled as I had prepared her for the worst.  She was very happy to have such a positive time with her precious "lil' Papa" as both my daughters refer to him...Mom, my brother and I were very relieved too. 

"Let's have lunch at In and Out", my brother suggested, and we all agreed.  Today was definitely a good day.

Wednesday, June 12, 2013

Woeful Weariness...

My brother B____ from Ohio arrived in Ontario this past Monday.  He was praying Dad would recognize him and realize he had come to see Dad...  He has been at Dad's bedside every day reading the Bible to Dad.

Mom has been going with my brother as she would not want him to go alone because it is flat out too emotionally difficult for most of us to go alone.

His first time seeing Dad my brother asked if he knew who he was because when Dad looked at him, Dad didn't respond.  All of us have always looked forward and enjoyed Dad's exuberant welcoming.  His face lights up and he rushes to greet us with big bear hugs and smiles.  Dad looked at my brother and responded, "Yes, you are my son."  No emotion.  I think Dad is just too tired to muster up any excitement.

I experienced the same thing the last time I visited Dad with Mom....Dad kept his hands clasped in his lap and did not respond happily to my calling him my pet name, "Papa Doots".  He usually ignites into joyful happiness, calls out my name and reaches to pull me in for a hug and kiss.  He did none of that and it made me cry.

I think he is "on his last road" toward the Lord...

It seems everything is an effort....even eating.

We've discussed the possibility of suggesting a soft food diet, but have concerns it might hasten a disinterest in eating...knowing, eventually, he will stop eating...

I was suppose to leave Tuesday, which I rescheduled to Wednesday...and now it will be tomorrow, Thursday, before I leave to drive to California...

I am all packed, but I am emotionally exhausted.

It takes so much intestinal fortitude to prepare myself for the 250 mile drive to Mom's house knowing what we all face when I get there; plus the emotional preparation I need to psyche myself up to go see Dad...I feel wiped out before I even leave.

I feel Dad slipping away, knowing soon he will be out of our sight and will live in our hearts and memories...

Despite preparing one's self for a parent's death, when it gets close, and I am certain when it comes, the flood gates will open and many tears of sadness and frustration will cover our lives for months and possibly years to come...

Yet, at the same time, intertwined with our grief will be relief.  Dad is not really aware of all his physical and medical issues...he lives in the demented bubble, where he may be aware for a nano second, only to have the thought dissolve as he diverts to the face of a pretty nurse.  If he were conscious and aware, he would abruptly have a heart attack.

Dad lived haunted by unmet expectations demanded by his Father.  Consequently, it crippled him from making important or quick decisions.  He was a serial procrastinator with anything urgent.  He lived in denial from the ability to not see how it affected those around him.  He over analyzed to the point of exhaustion.  He made a career out of going in circles.  His one and only focus was his family. He loved all of us without question, we could all feel it...but we knew he was not reliable except for limited conversations.

Mom ALWAYS filled in the gaps Dad left. Much of the time, we resented her for it...Now we look back in awe at what she did daily without acknowledgment. She was the-go-to-person we all went to when there was a problem.  Dad would listen and give advice, but he could not follow up or be responsible for helping, except for physical labor.  We collectively felt and accepted his weaknesses. We never confronted him on it, we just lived with it.  Dad was intelligent, strong as an ox, spiritual, gentle, kind, imaginative, inventive, a nature lover, farmer, spoke to and understood both plants and animals almost better than he could relate to humans; he was introspective, eccentric, quirky and quiet and we loved him for who he was.

I speak of Dad in the past tense because he is.  The Dad we see today is no where close to the Dad we knew and lived with all our lives. Dad was always puttering. I can think of three times when I saw Dad lying down during the day; when he had mumps, when his appendix burst and with blood poisoning from a redwood splinter... We see what we want to see now because we cannot bare to see the shell of a man left behind from the insidious plague called Alzheimer's .  The disease is an invisible thief, sneaking into one's life stealing slowly and indiscriminately until everything is gone and one is left with nothing but loss and death.

It makes my soul ache to see Dad the way he is.  I would not wish this disease on my worst enemy...

When I see Dad I have this soft ball sized lump lodged in my throat, my eyes constantly water and I feel like I am visiting some one else's Father not knowing what to say...

All the history we shared throughout our lives are now intermittent.  Some times he seems to relate, but most of the time, he doesn't.  I am relieved he closes his eyes most of the time, because the blank stare when he looks at me is so much worse.

I find the only way I can motivate myself to go see him is the faith we share, the memories we savor and the knowledge we must gather around him while we all wait for the glorious chariot from the sky to come and carry our Father home...

Sunday, June 9, 2013

Shrinking Away...

Mom went to visit Dad on my brother E's birthday June 6th....two days before mine.... She found Dad sitting in the dining room asleep in his wheel chair.  One of the attendants got Mom a chair so she could sit down.  When Mom tapped Dad to wake him, he spoke so softly Mom could barely hear him.  He spoke the same way when Mom and I last visited him.

Dad seemed very tired.  Dad's male nurse for the day told Mom how spry Dad had been earlier in the day...but Mom does not see it.  She feels he is really slipping.  She told me Dad "is like hugging a bag of bones"...

Dad kept his eyes closed and didn't talk much.  Mom was not sure if he was sleeping or just out of it...

Doctor-Doctor came up to give Mom and Dad a hug hello.  Dad smiled and told her he loved her.  He asked for some lemons because he wanted to make something...

Dad's lunch arrived and Mom fed Dad.  As usual Dad wanted to gulp down his coffee and milk first thing, but he is losing the ability to control his throat when he swallows and begins coughing and spitting out the liquid...  Mom attempted to get him to sip, but Dad insists on gulping it all at once, which always makes him choke.

Dad ate all his soup, egg salad sandwich, his peaches and ice cream (of course) but wanted nothing to do with his salad.

Mom noticed his finger nails were trimmed neat and short, he had been shaved and his mustache trimmed neatly so it did not hang down and irritate him.  Mom noticed his hair was a bit long and ask one of the attendants when Dad would get a hair cut and he told her he would make a note of it.

Mom also asked "Pickles" if she would help Dad brush his teeth.  "Pickles" told  Mom she had tried to help Dad this morning but he became very aggravated and told her he did not want to brush his teeth...(highly unusual for Dad not to want his teeth brushed...)

Dad put his head down and appeared to be going to sleep after finishing his lunch.  Mom inquired if he was tired and Dad told her he was ready for his nap...

Dad's male nurse assured Mom he would give Dad an Ensure and more ice cream when Dad woke up from his nap.

Mom had prepared herself for a depressing visit, but it was very sad to see Dad so lifeless...
 
                                             **************

I received a call from the nursing home today.  They weigh Dad every Sunday and call me either Sunday or Monday.  Dad has lost 4 more pounds this week....bringing him down to 116 pounds.  His oxygen was at 96%.  He had eaten 100% of his breakfast and 70% of his lunch.

His WBC is back up to 17.3 so his primary care doctor put him on a new antibiotic, Doxicillin (? not sure how to spell it.)

I have a horrible sense of dread....

Sunday, June 2, 2013

Loosing More Weight...

I got a call from the nursing home this afternoon.  The nurse informed me Dad had lost 5 pounds in one week.  He is now down to 120.

His eating is at 74%.  He really appears to be slowing down... I asked if he had diarrhea and she told me he did not.  I wondered because he is on so much antibiotics to keep the skin cancer growth on his baby toe from becoming infected.

I can't help but feel Dad is beginning his journey toward the light...