FATHER'S DAY 2013

Today is Father's Day.  Kind of a quiet day around the house as it is only me, Dad and the caregiver.  Dad got some sweet gifts from my brother and sister (including chocolate, of course) and I got him a card.  He's very difficult to buy for.  He won't leave the house to go out to eat.  I always feel like I'm letting him down on such occasions.  Yes, he loves the chocolate, he could use new shirts, but not a single thing comes to mind that would really bring a smile to his face.  There isn't much that does that anymore.  He looks at the cards that he received over and over and he will probably read them several times a day for the next few days.  Maybe that's what makes him happy, it's just so hard to see, to know.  That's one of the sad parts.  

My kids are all gone this weekend, so maybe we can all get together for a cookout soon.  Even that won't give me the results that I long for......a happy place for my Dad.  Too many people in the house end up making Dad agitated and restless.  I love family time - it just isn't the same anymore.  Nothing is the same anymore.  

My brother and sister-in-law called today and that always brightens him up.  The only bad thing is that Dad is getting so hard of hearing, it's difficult for him to talk on the phone.  At least they call.  My other brother hasn't talked to my Dad in almost 22 months - not since the day my Mom passed away.  How sad is that?  As difficult as it is, I am the blessed one to have this time with my Dad.  

I wrote the following on August 23, 2009, not long after we had gotten the diagnosis of Dementia.  I had suspected something before that, but hearing that word and seeing the disappearing of someone that you love is devastating.  

MY DADDY
Naval Officer, preacher, teacher, scholar, mentor, counselor, friend.
My dad has done many things and has touched many lives.
To me he was the one that would hold me, feed, me and play with me with one hand and study for a mid-term with a book in the other hand; the one that took me and my brothers to town every Saturday morning when we were little and bought us candy at the dime store; the one that said he would spank me when we got home, but would always "forget"; the one with a soft heart that I saw sob when I made him a room full of Father's Day cards when I was 5; the one that would threaten to break the neck of any boy that broke my heart; the one that lovingly told me "No" as a teenager but took the time to explain why; the one that as a little girl he would give me his finger to hold onto as we walked along and then 25 years later I watched him teach my baby girl to walk in that same way.
My dad has always been a teacher. He taught young sailors how to be the best they could be, he preached and taught God's word for 50 years; he taught Greek to young men and old both in the classroom and in his home over coffee and cake.
But he taught me a quiet, gentle patience; he taught me discipline and unconditional love, he taught me how to pray, he taught me what a loving and adoring husband looks like.
He believed in me and was always proud of me no matter what.
Now as I look at my Dad, he looks like my Dad but where did he go? Although I know its still there, all of the brilliance of his mind is locked away deep inside. Dementia is an ugly word, a word I have grown to hate. I miss the man that he was and am trying really hard to adjust to the man that he is now. Forgetful, confused, angry sometimes and frustrated.
My dad has been many things to many people, but to me he's just my Daddy.

Four years after writing this we have all been through a lot.  Too many changes, many of them very sad.  We plug along day after day, with the help of caregivers, each day just the same as the others and yet every day different.  Good days, bad days.  Plugging along......

Father's Day 2013.  I don't know how many more I will have with my Dad.  I will cherish every single day. 

Smiles

Smiles.  My Dad has several different smiles – each one with its own meaning. 

He has the fake smile.  The one when he’s acting a little grumpy and you tell him to smile and stop being such a grouch.  You get the big fake cheese smile. 

He has the mischievous smile.  The one when he’s being difficult (although sometimes I think on purpose) and you call him on it and you get that little boy smile that tells you he knows exactly what he’s doing and he has us all fooled – at least for the moment. 

He has the, oh so rare, happy smile.  I got one of those this morning.  Dad woke up really early – like 3 hours early.  Of course, he had to pee and I had to explain the catheter once again.  He said he was hungry so I pattered off to get him a breakfast bar to hold him over.  I couldn’t help but think how much this reminded me of years gone by raising my children – that put a little smile on my face.  When I got back to his room with his snack, I told him to eat it and try to go back to sleep or we were both gonna be cranky all day.  That’s when I saw it.  That sweet little happy smile that I will remember all day. 

How's your Dad?

“How’s your Dad?” This is the question asked by just about anyone that I run into that knows my Dad or knows the situation.  I hate that question.  What am I supposed to say to that?  My usual response is “He’s fine.  Good days and bad days.”  That’s a freaking lie.  He’s not fine.  Physically, he may be fairly healthy (in spite of his multiple problems).  He has Dementia.

Dementia.  People don’t understand that word, much less the disease.  They are afraid of it, they don’t know how to talk to a person with Dementia.  I have had so many people tell me, “Well, I just don’t know what to say to him.”  Really?  Well, sometimes I don’t either, but I either talk about whatever happens to be on the TV at the time, talk about what the kids are doing or just sit there with him.  This disease is 24/7.  There are no periods of remission.  There are no days when everything is great. 

Change.  Things change with this horrible disease.  Everything changes.  As spoken by a friend, “There is no normal anymore.  Just the ‘new normal’….meaning things change every day, sometimes by the hour and even minute.  You have to adapt.”  Those words are true, those words are sad, those words are my reality, my Dad’s reality.

I do not write this blog to gain sympathy from anyone.  It is an outlet for myself and if anyone chooses to read it, then I need to be allowed to vent without criticism or judgment. 

Caregiving.  This caregiving thing is hard…..the hardest thing that I’ve ever done and I’ve done some hard things in my life.  Unless you have been or are a caregiver - a caregiver for a dementia patient - it is something you will never understand.  Unless you have been where I am, I don’t need your advice.  I need your support.  I need your help.  Sometimes, I just need a break.  A vacation, without worry, would be really nice.

Memory.  That’s an interesting thing.  It’s amazing to me the things my Dad remembers and the things that he doesn’t.  He can whip out a word search puzzle in no time or answer the Wheel of Fortune puzzles faster than anyone……sometimes.  He can talk about some girl he went to high school with, but he can’t remember that he just ate lunch 10 minutes ago.  He knows me…..I am thankful for that.  He knows my kids because he sees them often.  He knows my brother and his family because they call every week.  The other photographs in his room, they are strangers.  That is sad, but that is their loss.  There may come a day when my Dad doesn’t know who I am although he sees me every day.  That will be a hard day, but for now I am thankful.

“How’s your Dad?”  Well, what I really want to say is, “He has Dementia.  He has a terminal, progressing disease for which there is no cure.”   That answer would probably stop the question and probably cause people to avoid me.  I really don’t care because they already avoid my Dad.               

A SCHOLAR'S LIBRARY

I spent a few hours today in my Dad's library cataloging and boxing his books.  It is an overwhelming task.....there are literally THOUSANDS of books.  It is very time-consuming.  It was my Mom's idea to eventually sell the library as a whole instead of selling them individually ending up with random books.  After my Mom passed away, my brother and I talked about it.  Not only is the task itself overwhelming, but where do you begin to put a price tag on such a thing?  I would have NO idea.  We discussed my Dad and all the years he spent teaching and preaching.  It was something that he LOVED to do, it was truly his passion.  He spent many years doing those things as his occupation, but we both know that he would have absolutely done it for free.  He just wanted to study, to share his knowledge and to learn more himself.  

I have 8 boxes cataloged and boxed up.  A mere grain of sand on the beach.  This afternoon, after I had worked out there on one more box, I stood up and looked around at the massive amount of books.  MASSIVE!!!  I teared up...actually I cried.  So many books, thousands and thousands of dollars - all of them gathering dust because of a horrible disease called Dementia.  What a waste, how sad.  A man that spent 50+ years devoted to studying God's Word, Bible History, Greek and Hebrew......things that most people just couldn't grasp.  Some of the titles of the books themselves are mind boggling.  He has two Masters degrees - one in Biblical Languages and another one in Teaching English as a Second Language.  He received his PhD in Greek.  He is a brilliant man, but everything is just locked away somewhere in his brain...probably never to be heard again. 

Dementia.  I hate that word.  I hate that disease.  It has stolen my Dad.