Used Books

Lately I've become a sort of a bibliophile, I guess my husband is influencing me. He has a collection that could rival a small country library. Each week I pay a visit to a local thrift store to pick up a "new" book to read for .50 to a $1.00.   It takes a little bit of time to puruse the piles of discarded books and find something I'm actually interested in reading: these are used books after all.  Once I've made my selection & purchase I bring the "new" books home and they sit on my bedside table until I make my way down the stack.  

For years I read non-fiction: self help types books (how to be a better... wife, mother, etc), for a while I was really into biographies.  For the past 2 years (other than my educational FTD reading) I've been pretty dedicated to fiction.  Though technically the book that inspired this blog is a memoir. 

Why do I love used books?  It's simple: the notes & underlined passages.  Once I had a book that had been used/read at least two times previously.  The first reader made notes in pencil - the follow up reader used black marker.  Not only did the second reader cross out the first reader's thoughts, but made rude comments on how stupid they thought reader one was.  As if reader one would ever get that copy back & know somewhere out in the universe a second reader thinks they're dumb. 

Still I love the comments & underlines.  It offers insight as to what someone who's gone before thinks.  You are both experiencing the same thing: reading the same book; I find it fascinating to compare our reactions to the same passage.  Why did the previous reader think a certain passage was so deep and insightful to merit an underline?  I didn't think it was underline worthy. 

What does this have to do with my daddy's FTD?  There are times we're experiencing something together and I totally "get it."   I know what he's talking about, why he's emoting the way he is, what's making him tick: I understand the notes in his margins.  There are other times when I'm left blank.  It's as if he's made notes in the margins of his life & underlined events that are of great importance to him and I'm just an outside viewer left completely confused. 
I wish there was a way to know.  People think you can just ask him, but many times you can't.  The kicker about this disease is at times there is no logic, no sense, no reason: it just is what it is.

Crying, Driving & Ice Cream

Sunday morning my daddy woke up in a bad mood.  Side note: If you know my daddy he's generally a very jovial fellow.  Even with this disease, most days he's in a good mood.  On Sunday he woke up, got dressed (even with his shades on) and sat in his chair.  Didn't turn on the Tv, eat any breakfast, he didn't even have a cup of coffee - daddy & I are serious coffee addicts. 

Danger, danger - it looks like it's going to be a bad day.  There had been warning signs Saturday night as my kids & I were visiting & he went to bed before we left without saying bye.
Mama had a girl's afternoon scheduled with her friend, so I had to call in reinforcements (my brother) to make sure daddy didn't get into anything - you never know what will strike his fancy, especially when he's in a "mood."   In addition to the general malaise on Sunday he also accused one of the grandkids of stealing his money - he had just misplaced his money clip.

Fast Forward: Monday morning daddy did not want to go to the adult facility, though mama managed to get him there.  Since he was probably still in the mood I decided to pick him up from the facility. 
Once we left, I could tell he was still in a mood.  Normally very social, he didn't even want to say goodbye to his favorite other attendee - he just got in the car.  We ran to the grocery store, he always wants to buy the grandkids candy, but not today.  Though he did perk up when he mentioned he thought we should go get an ice cream  and it would be "our secret"

While eating my ice cream I had gotten some on my nose and tried to get a response out of him:
Me: Look daddy, I've got ice cream all over my nose.
Daddy: (looking straight ahead) hmmm
Me: You didn't even look
Daddy: (glancing over at me - no response)

Let's try another tactic. 
Me: What's wrong?
Daddy: Nothing
Me: Do you not like going to the facility?
Daddy: Not every week (he meant every day), but I'm going to do what SHE (referencing my mom) tells me to do.
Me: Well daddy, I'm the one who said you need to go more days, not her.

I've taken on the role of mama's defender - wish I could have some awesome cape or hero costume with the role.   My goal through this whole mess (the disease) is to protect daddy & guard my mama's well being. 

Well the above conversation dragged on - of course I started crying, but not wanting daddy to see, kept my sunglasses on and quickly wiped away any stray tears.  It's so frustrating trying to reason with someone who's lost most of their capacity to reason, due to this disease.  I always describe it as a dance: he makes a move, I try to follow, if we get off course, I try to lead us back - this crazy dance changes lead partners all the time.

The good news: Daddy was in a much better mood after our ice cream drive.  Who knows: was it the ice cream, the talk, or he just forgot he was upset?   Really it doesn't matter.  Today we have my non-grumpy daddy back, I love it and we treasure it while it lasts. 

The main thing I've learned while journeying with this disease: life, time, emotions are all fleeting.  We do the best we can, with what we have, while we have it.  We're living life now, we can't wait til things get better or our situation changes to live our life.  Life is fluid: always changing.  Each moment should be treasured because we'll never get that moment back.

Yard work, I hate it!

We are about to enter our second summer since daddy's diagnosis.  Last summer presented a yard work challenge: Daddy wanted to do it.  At the beginning of the summer things were ok - we even still allowed the kids to ride with him on the riding lawn mower.  As the summer progressed (we're in the south and this year the summer pretty much extended to the end of October) we had to make some changes.  By mid-summer the kids were no longer allowed to ride with their papa; at the end they weren't even allowed to be outside if he was doing working.  We arrived at that decision when we noticed Daddy swinging around the bush cutter (picture a weed eater with a blade instead of string).  Every week some piece of lawn equipment would break which made daddy so angry at Sears' poor repair job and boy would he slander them (Sears never repaired any of the equipment).  At the time we didn't have the heart to take away this chore he loves to do, which also gives him a sense of pride.  In addition to doing mine and my parent's lawn care, he appointed himself yardman for his neighbors.  He'd weed eat or bush cut about half an acre back into the woods for his neighbors.  These sweet people knew about his disease and figured he wasn't doing any harm.  Though one older neighbor kept a keen eye on him - making sure he didn't undo all of her hard work.
By the end of summer my mama had paid who knows how much for the repairs from daddy's yardwork.  Both of our lawns had bald patches where daddy would weed eat in just one spot.  We looked forward to fall: when we could put away the equipment and have a much needed break.    Seasons change: so here we are, the grass is high and daddy's getting ready for yard work.  This year he has no business trying to use the bush cutter nor the riding lawn mower.  Already he's gotten upset, thinking my husband has borrowed his tools and not returned them - "what was he raised in a barn?"  The tools turned out to be in my parent's garage. 
So I feel like the bad guy - I'm suggesting that daddy start going every day to the adult facility, unless someone is home with him. 
This disease is crazy: in one moment I can chuckle at my daddy's determination to rid his loved one's yards of tall grass; and in the next moment I cry at his inability to do so - a task that was once so simple for him.

It's the end of the world as we know it...

Flashback: July 2009

 Daddy and I had one to the eye glasses store to get an exam and pick up some new contacts for me / glasses for him. He's always prided himself on his 20/20 vision, but recently the dollar store readers just weren't cutting it. As we're filling out the mandatory forms, I notice my daddy is going really slow and seems a bit confused while filling in his answers. I made a mental note to myself: "One day I'll have to take care of my daddy" He was 55 years old.

Over the next year and 3 months, daddy got into 2 wrecks: one of which he had no idea what happened. Would increasingly get frustrated at ATMs, fastfood and store cashiers (he couldn't work the card machines). He refused to use one gas station, insisting that they would not let you buy gas. We thought maybe it was because he'd been working the night shift. During the summer of 2010, the Dr. gave my dad some meds to help: uppers & downers. Physically he looked better, but the confusion remained.

It hits the fan: Halloween weekend 2010

 My mother in law was moving into our house and daddy helped by driving the moving van. He'd been taking a lot of vacation lately, but since he had a good bit we weren't too concerned. While packing up my Mil's house - my dad was acting a bit out of it. I overheard him on a phone call with a work buddy and could tell something was up at work. We asked daddy what was going on and he said he couldn't remember if he requested the time off he'd been taking.

While making the 2 and a half hour drive from my mil's house to mine, my daddy followed the car I was driving. Once we arrived he let us know that if he had not been watching my car he doesn't know if he would have made it home. That was the last day he drove.

He went back to the Dr. Then off to the Neurologist. Finally a Neuro Psychologist for testing.
The neuro psychologist told my dad if he didn't know better he would have thought daddy was trying to fail the testing in order to get on disability. This didn't sit too well with daddy as he's the hardest working man I know. A few weeks later I read the report from the testing. Going over new words I'd never heard. Aphasia, FTD, Pick's disease, Alzheimer's was the only word I had previously known. So I did what I do.. research. Well after reading about FTD I thought, that's it, that's what my dad has. I was the first one to diagnose my daddy. The other Drs. just said he had early onset Alzheimer's. Since he was so young we went to get a second opinion. On February 2011 he was officially diagnosed with FTD. Thankfully his new Dr. was a specialist in FTD.

Check up: March 2012

 During that first year mama and I worked hard to put affairs in order. Daddy carries around a small amount of cash, mostly so he can buy the grandkids snacks. At his check up the initial report was he had declined 50%, but after hearing the ways in which he is high functioning his scores were padded a bit. As of today he's attending adult facilities 2-3 times a week.

To blog or not to blog?

Like so many, who have a love one with FTD, I've been looking for an outlet for the things I think & feel.  To blog or not to blog, that has been the question.  On one hand I feel that I do not have near enough time, still I think it's very important to get all of the thoughts & emotions I have out instead of holding them inside.  Why pick this venue? A bonus - others may benefit from what we're going through.

Backstory:  I'm Don's Daughter.  My daddy was diagnosed with FTD back in February 2011.  Will tell the full story in a later post.

About me:  I'm in  my mid-30's.  Married with 3 kids.   My mom & dad have been married almost 40 years.  These are my thoughts, emotions, advice, etc.  Please do not be offended at my lack of spelling & grammar skills.  Hope you enjoy the journey.