I am a rock, I am an island...

People respond to trauma, tragedy, emergencies, etc in very different ways.  My initial reaction is to remain very calm, logical and resourceful.  When something happens I want to take care of the immediate need and research what I need to know for the future.  After the situation has long been under control and emotions have calmed down - depending on the severity of the event - I may freak out, a little.  That's how I was with Daddy's diagnosis.  Months after being calm, making plans and researching the mess out of FTD - I broke down and realized I was clinically depressed.  Thankfully that's under control, but I've been in a "new" phase for about a year.  I think of it as padding.   I'm aware of the changes in my dad, we discuss them, but I don't always feel or "let go"or share them with others.   I don't think I struggle with trying to have control because I know in life that isn't a reality.  What I want is to be STRONG.

In my early twenties I was a very huggy, affectionate person.  My mama complains that the older I get the more standoffish I've become.  Mostly I blame my children.  My hubbers and I are the proud parents to three kids; all elementary age.  The years are fast approaching when they won't hug me much - so I should savor the time, however some days I've been over-touched; this happened especially during the toddler years!   As a result I struggle with receiving hugs from adults.  I can handle the quick side hug or a fast in and out.  The thought of someone trying to hug & hold me overwhelms me.  If that happened I'd probably turn to mush and if I was mush how can I be strong for everyone else?

Today we went to church and at the end of the service the pastor per usual offered to pray for whomever wanted/needed prayer.  This was the first time in a long time I really wanted to go down for prayer, but I didn't.  I knew that I would just want to be held and just let all of my emotions, fears, pain - everything pour out.  Which I'm sure would accompany a good deal of tears and snot .  So I didn't go. Instead I thought of Simon & Garfunkel:  I am a Rock, I am Island

How often do we, do I  - do things like that?  Under the guise of needing to have control, to be strong, to move past this, etc, etc; we shut people out and we don't take advantage of those willing to share the burden.  Sometimes the thought occurs to me: if I'm trying to be so strong, will I turn to stone and not be able to feel the good things?  It's so easy to say, "but they don't know what I'm going through."  That's true - no one really knows exactly what anyone else is going through.  Still if someone is offering me a word of encouragement, a prayer, a "how ya doing", or even something scary like a hug - I'd be foolish to reject such things.  I need to accept them and not just accept them, but to share a bit of my struggle, a bit of my soul and maybe even turn a little bit to mush with them. 

Everybody needs a hobby

Daddy is built to be productive; it's the cloth he was cut from.  He started working when he was just a kid for uncles during the summer.  Not little "jobs" I'd give my kids today, but real honest to goodness hard work.  While still a teenager he entered the freight business.  His calves will attest to his many years of dedication - my husband described them recently as what you would see on a drawing of a superhero - hard angles not rounded.  Most years he would work two and sometimes three jobs to provide more things and opportunities for his kids, than he had for himself. 

Since being helpful is in his DNA, he's struggled with not working.  In the earlier stages of his disease he was still able to do yardwork (see previous post as to why we're thankful he no longer does this - though he still offers).   Daddy has always been helpful around the house; so early on he would cook, do laundry, dishes and try to tackle minor repairs.  The repairs and yard work were the first to go - he doesn't have the cognitive ability to follow the procedures to complete such tasks.  He still likes to bake cakes, but only can do so with Mama's help.  He's no longer home alone, so if he gets the urge to cook up something - someone would be around to assist.  Daddy still tries to do the dishes and laundry - though you have to check because they may not actually be washed or maybe they were run through a cycle, but without soap.  Since I have a large family, Daddy was so helpful when mount dirty clothes took over my house.  Nowadays I just send him sheets to wash.   As for dishes you definitely have to follow up.  Many times I've been over at their house, reached in the cabinet to pull out a dirty dish, bowl, fork, etc. 

It must be hard, losing the ability to provide even basic help for those who you've given your all to ensure their security and comfort.  With FTD it's hard to tell sometimes what Daddy's really thinking.  Thankfully, most of the time he's not too keenly aware of particulars of his diminished capacity. 

The main thing Daddy can still do and is perfectly happy to offer his services is Cutting Coupons.  He has been scissor happy for almost 2 years.  I coupon and his act of service started by helping me.  Each week we buy Daddy a double paper and he goes to town.  Now anytime we're in a grocery story, he picks up any flyer's that may have a coupon - just so he'll have you covered. 

You can see the affects of FTD on his coupon cutting.  In the beginning he would clip only the grocery item coupons, then came any store's coupon that was in the Sunday paper.  He started to clip out sections of the flyer's that look like coupons (anything that had edges).  Now we're up to just cutting out anything from the flyer's.  Today we saw where he had cut out the shape of a bottle of ketchup.   Though this does make me sad, I thought - Art Class.  We can take what Daddy clips and donate it for collages and other arts & crafts projects.  When he reaches the point where he can't handle regular scissors; we'll just buy the safety ones. 

When you are battling FTD you have to find what works: what's safe and makes your loved one happy.  Last Sunday Daddy called me up to see if I knew there was a coupon for the local mall and did I need it.  That's my Daddy, still taking care of his little girl. 

So if you have any coupons in need of clipping, I just might know a guy.

What's normal?

Today I received a phone call from an old friend.  We briefly caught up on each other's lives from the past several months and he mentioned that he's read this blog. I talked about how Daddy has been lately - what's become our new routine, our new way of life.  I let my mind wander to a thought I mull over when things are quiet.  Pause: I have a husband, three children and I work outside of the home, so life isn't often that quiet.  When I do have a bit of alone time my mind develops this before and after list.  It's almost like an advertisement for such & such diet complete with before and after photos.  In my mind I see two images of my daddy:  Before FTD and After FTD. 

My family is pretty upbeat.  We try to take life in stride and make the best of what we've been given.  We cope with our new way of life with a heavy side of humor / mostly self-depreciating.   On a recent trip to Dairy Queen , Daddy informed me that he's still quite capable of driving, "I know I could operate the car, I just don't know if I could get back"; he said with a smile.  Since I believe life is what you make it, I try to put on my big girl boots, keep calm and carry on. 

Since my mind wandered to the Before and After comparisons, I had a whole set of sad emotions welling up and thought a post is in order. 

Before FTD:
My daddy could do so many things and build anything.  He built my oldest daughter's nursery - complete with built in bookshelves and a window bench.  If I ever needed anything fixed, I'd give my daddy a call and he's been there and it would be fixed.  Many times on his days off he'd come over to my house and do yard work or some other project, just because he's built to be productive, it's who he is. For the last several years when he was still working, he'd call me everyday on his way home from work.  This became a joke between my mama & I because he'd call me to see if I needed anything, but not her.  Daddy and I would go grocery shopping and he'd make fun of my lack of math skills when I'd have to ask him for the hundredth time, "so if it's 3 for $1.00 it's how much each?" - finally I memorized the answer just to impress him. 
Daddy would pick up the kids from school and it was a must to stop by the store for a drink and snack.  He would take them to the dump, out to lunch or anywhere they wanted to go and they would rather be with him than anyone else in the world.  He would light up when any of the grand kids walked into the room. 
He was always fairly shy and wouldn't talk much.  He was so good and would do just about anything for anyone.  He was my daddy!

After FTD:
Daddy can't build things anymore - with our assistance we might be able to accomplish a small task, but no more flooring, decks, woodwork, etc.  When he tries to do yard work, if he doesn't break the tool, he ends up not finishing the work, working on a patch of dirt or just going over the same spot. 
Since Daddy no longer works or drives he doesn't run errands for me nor is he able to take the kids off, just he and them.  Though he still makes fun of my lack of math skills, our grocery shopping trips look quite different.  We'll walk through the store and he'll pick up things he has to have or things he want to get for the kids, all the while saying, "Now this is going to come out of my money!"  He still has a cell phone, though some times he has difficulty operating the phone; he doesn't call me too often.  Some days when I pick him up from the facility, he'll get a mischievous look in his eye and suggest we stop for ice cream.  If he's with us when we pick up the kids from school and if he has pocket money; Daddy insists we stop off at the store for drinks and snacks.  Daddy takes great pride in the fact that the grand kids have voted him best chocolate milk maker - probably because he pours excessive amounts of chocolate syrup in the mix.  He still adores the grand kids, but he doesn't light up when he sees them like he use to. 
Not so shy anymore, Daddy will talk to anyone and eavesdrops on most conversations so he can join the chat.  He is still a very good man and he is my daddy!

The way Daddy looks is different now too, often he'll have either a vacant or confused look on his face.  He looks older - though he's young, still in his 50's. 

It's been a hard shift.  Even as an adult, I relied so much on my Daddy and he did so much for me.  Now I have to protect him, make sure he's where he needs to be, help figure out the what he's trying tell us, and try to make sense of any compulsions he may have. 
Though the change has been very fast, and I've grieved losing aspects of what made him my Daddy, it can still be overwhelming when the Befores & Afters pop up in my mind.
Like all change the After becomes the new normal; we grow and adapt.  Change is inevitable and the best thing we can do is to is to put on our big girl/boy boots, keep calm and carry on.

The Ballad of Uwilda or Daddy might need a job with the DEA

Well it has been quite a while since I've written and I don't have any great excuse, but the one most people have - life has been busy! 

Some of the issues folks with FTD have are compulsions or paranoia.  The following is the still ongoing account of one of the issues we're facing with Daddy.

To put things in context let me begin with a backstory. At the end of school awards ceremony, Daddy was sitting with my  brother & me waiting for the event to start.  As we were in a school cafeteria, I suppose his mind wondered back to his school days.  One of his favorite stories to tell is when as a high school Junior; his agriculture class built the school's greenhouse.  The following year, according to legend, a non-legal herb was grown in that greenhouse.  Back to the present day cafeteria, as a lull fell over the crowd, Daddy leaned over to my brother & me and said, "Hey, do you think they still grow.... "  He was interrupted by my brother's shhh and me saying, "Daddy, we can't talk about that here."  This all ended with Daddy chuckling and the ceremony beginning. 

My Daddy loves to read the paper.  He devours the whole thing from front page to the last.  Any given week he can be counted on to tell you a recipe to try, if there is a house near you in foreclosure, but he delights in advising the who's who from the Arrest Log.  To protect the innocent & not so innocent, going forward some names will be changed.

A few weeks ago I went to pick up Daddy from the adult facility; he's been attending pretty much daily.  It was a bit apparent that he was slightly aggitated, so I had the dilemma: should I try to figure out what's going on or just ride it out.  Well I chose the latter.  That didn't last long, because once we were in the car, he opened up. 

Daddy: I just don't know what Ms. Suzy is going to do.
Me: About what?
Daddy: Uwilda (a worker at the adult facility), I read in the paper she was arrested, they searched her car and found pot!
Me: Really?
Daddy: Yup, she's got to be out on bond, I'm sure they're gonna come & pick her up soon and take her to jail.

Once I dropped Daddy off at home I called Mama.  She informed me that Daddy is convinced that Uwilda at the facility is the same Uwilda from the paper - she's not.  No amount of clarification, suggesting that there is more than one Uwilda (a common name), or assurance that the facility wouldn't hire a drug addict changed his mind. 

Now we know why Daddy sometimes chooses to hang out on the front porch of the facility.  He doesn't like the noise nor does he like Uwilda.  Still what can we do about this?  Mama and I brainstormed and we thought we came up with a great solution. 

The next morning on the way to the facility, Mama and Daddy stopped by the store where they get a biscuit.  Every day there has been a sheriff's car parked out front.  Well the sheriff wasn't there.  Mama went in and made inquiries, the waitress said it was the sheriff's day off, but what luck - he pulled up right then.   Mama explained our situation, Daddy's disease and how we need to clear the facility's Uwilda's good name. 

Sheriff: Hey Daddy, Uwilda at the facility is not the same that was arrested.
Daddy: She's not? No, she definitely is!
Sheriff: No, that facility is a good place.  They wouldn't hire a drug addict.  They have background checks.
Daddy: She's out on bond and it's just a matter of time til they come and get her.

After that Daddy calmed down a bit, but still was waiting on the police to come & haul Uwilda away.
A few weeks later, after no word about Uwilda, I picked up Daddy from the facility. 
We're pulling out and he says:

Daddy: I just don't know what Ms. Suzy is going to do.
Me: About what?
Daddy: Uwilda, she's got arrested for pot and is out on bond, they're gonna come get her any day.
Me: No Daddy, that's not the same Uwilda. I read the newspaper and it's a totally different Uwilda.
Daddy: Really?  Hmm, the Sheriff told me it was a different Uwilda.
Me: That's right.

Victory!  Maybe we've moved past Uwilda.  Last week I picked him up.  Uwilda was there, Daddy was nice to her, made small talk - very polite. 
Daddy loves to bake cakes, though he can no longer make them by himself. Daddy and Mama made a pound cake and took it up to the facility.  Uwilda loved it and Daddy was happy.  Finally it seemed we could move past the Uwilda issue. 

Then Friday, Daddy's reading the paper again.  Opened up to the Arrest Log & he gets upset. 
Daddy: She's done it again.  A Uwonda was arrested on disorderly conduct!
Mama: (she looks at the paper) Daddy, that Uwonda not Uwilda!  It's a complete different name.

And the beat goes on...

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.